Well, my heart has been behaving over the past week. I have had pains nearly every day but they haven't been as significant as the one's last Wednesday so I haven't needed to call the ambulance. Apparently that is quite normal and is what I am to expect from now on. It will just come and go in ebbs and flows.
I still can't believe that I may have had a heart attack. It just doesn't seem right, although I suppose if the tumour gets larger and starts taking up more space it makes sense that the pressure it puts on my heart would cause some kind of reaction.
I have been very nervous for the past week, just taking it really easy because I am petrified of the same thing happening again. I have been staying in bed until mid morning every day and keeping everything I have been doing very low key. I think I said last time the reality of the disease has come back to me now, so I am putting my health first and back to living each day as though it could be my last.
On that note, we decided to get a room in a city hotel for NYE. The room has harbour views but not the harbour bridge. It will be good to share it with the kids and while it probably won't be the most magnificent view, given we are missing the harbour bridge, I am sure the experience will be great anyway.
I hate though now that I fear everytime I go somewhere that I am going to have issues. Like for example, I am thinking, "What if I have another cardiac event on NYE? How will the ambulance get to me? Will I be alright?" I will end up worrying myself to an early grave! Silly I know, but I just can't help it.
I have to go and have a blood test today because they are going to restart my chemo finally. I guess I will have the blood test today, results will go to them tomorrow and I will start on Monday. I don't know.....they may want me to start right away so on the Friday. I am a little apprehensive as apparently nausea is a bit of an issue on this drug and it doesn't take much for me to feel nauseous. And add to that that I am the biggest sook in the world....it's not a good combination!
When next I write I expect I will have experienced NYE and I may have started chemo so wish me luck and I'll keep you posted on how it all goes.
Take care and Happy New Year. xxx
Never, Never, Never Give Up
Tuesday, December 29, 2009
Thursday, December 24, 2009
A few steps backward
I suppose I was just about due for some bad news, but I think the timing could have been a little kinder!
It seems I had a heart attack yesterday afternoon.......yep, little surreal hey!
I always knew that my heart was gong to be where all the trouble would come from, they had made that very clear during my early appointments, that the cancer being in the heart was terribly unusual but also there is nothing they can do for it.
The pain in my chest yesterday was unbearable. In hindsight, I really should have called he ambulance, but I kept trying to tell myself that it was just indigestion. I think I really freaked out Melissa though...she was pretty certain that something a bit more than a tummy ache was going on but didn't think it her place to say, "I think we should call an ambulance", I don't know if that was maybe what I needed though, someone to tell me that I needed more help. A bit of reassurance....Anyway, I will know better next time.
Melissa instead suggested I call Jenelle, my nurse, to get her opinion. She didn't get the message until this morning so that was no use to me! Anyway, after about 3 hours all the pain went away and apart from being absolutely exhausted I felt OK.
Jenelle got my message first thing this morning and naturally called straight away. She was horrified and of course really worried about me. She came over and decided that it would be best for me to go to hospital to have it checked out before we get into our bedded down plans for next week. She tried to call the doctors from here to get their opinion on what I should do but was unable to get hold of them. In the late afternoon they finally got back to her after having a discussion on my symptoms and came up with a few revelations. Firstly, they believe the melanoma is causing the pain and not the effusion. What that means is there is nothing they can do about the melanoma whereas the effusion could need to be drained. The upside of this was that I didn't have to go to hospital because there is nothing they can do anyway! The deal is I can sit tight,but if the pain comes back very badly again I have to go back to hospital. I thought that was pretty fair!
The downside is it was my "seems to be weekly lately" wake up call. A reminder of my disease and a part of it that will probably be my ultimate downfall. The only question is a matter of time. How long will it take to overpower my heart and render it useless?
Anyway, who knows, and at this point it probably shouldn't be something I should be worrying about. Just focus on the good stuff and taking care of myself.
Well, Merry Christmas and let's hope I stay out of hospital. xxxxx
NEVER, NEVER, NEVER GIVE UP!
It seems I had a heart attack yesterday afternoon.......yep, little surreal hey!
I always knew that my heart was gong to be where all the trouble would come from, they had made that very clear during my early appointments, that the cancer being in the heart was terribly unusual but also there is nothing they can do for it.
The pain in my chest yesterday was unbearable. In hindsight, I really should have called he ambulance, but I kept trying to tell myself that it was just indigestion. I think I really freaked out Melissa though...she was pretty certain that something a bit more than a tummy ache was going on but didn't think it her place to say, "I think we should call an ambulance", I don't know if that was maybe what I needed though, someone to tell me that I needed more help. A bit of reassurance....Anyway, I will know better next time.
Melissa instead suggested I call Jenelle, my nurse, to get her opinion. She didn't get the message until this morning so that was no use to me! Anyway, after about 3 hours all the pain went away and apart from being absolutely exhausted I felt OK.
Jenelle got my message first thing this morning and naturally called straight away. She was horrified and of course really worried about me. She came over and decided that it would be best for me to go to hospital to have it checked out before we get into our bedded down plans for next week. She tried to call the doctors from here to get their opinion on what I should do but was unable to get hold of them. In the late afternoon they finally got back to her after having a discussion on my symptoms and came up with a few revelations. Firstly, they believe the melanoma is causing the pain and not the effusion. What that means is there is nothing they can do about the melanoma whereas the effusion could need to be drained. The upside of this was that I didn't have to go to hospital because there is nothing they can do anyway! The deal is I can sit tight,but if the pain comes back very badly again I have to go back to hospital. I thought that was pretty fair!
The downside is it was my "seems to be weekly lately" wake up call. A reminder of my disease and a part of it that will probably be my ultimate downfall. The only question is a matter of time. How long will it take to overpower my heart and render it useless?
Anyway, who knows, and at this point it probably shouldn't be something I should be worrying about. Just focus on the good stuff and taking care of myself.
Well, Merry Christmas and let's hope I stay out of hospital. xxxxx
NEVER, NEVER, NEVER GIVE UP!
Saturday, December 19, 2009
Not much to say......
Except I am happy to be home from hospital. Apart from the fact that they completely monster me when I am in there from the perspective of all the needles. Sometimes the idea of a portacath doesn't sound that bad after all! Just in case, you don't know what that is, it's a surgically implanted line that they can give you drugs and take blood etc from so it would mean none of this continual prodding and poking I have to endure at the moment between blood tests and canulars. Being the huge sook that I am though, the thought of the implantation is just too much for me to deal with at the moment so they haven't pushed the idea and the gfact Iwill going onto oral chemo probably means it's less important to get one.
THe boys are certainly happy to have Mummy home.....particularly Andy. That's been a bit harder this time. Normally Andy is OK and Matt is the one who struggles terribly, but Andy hasn't coped very well this time with the whole hospital thing. I don't know what they think is going to happen to me while I am in there or if it is just the fact that I am there and not at home with them. I am guessing it's the latter.
I am still feeling a bit reflective and very emotional about Christmas. I think it's because I didn't expect to be here for Christmas, let alone share it with my beautiful family with extra gifts donated from friends'church group and the lady, Jillan, from kindy who not only gave me the gift vouchers, (which I told you about already), but she also bought a whole heap of presents for the boys. People have been so kind, it almost makes me feel guilty.
I just want to take a moment to thank all of you again. For your love, support, prayers, donations and gifts. They all mean so much to us and I know if I would be beating this disease and fighting back as strongly as I am if I didn't have all the love and support I do. So thank you again and keep it coming! There can never be too many prayers hey!
I still haven't heard anything about starting chemo. I am guessing now that they will probably wait until after Christmas just in case there are any adverse effects or I have a reaction. I am sure they don't want me in hospital over Christmas either.
I am worried about my heart. I have felt it out of beat a few times today and I've had more pain in the past couple of weeks, (since the infection), than I have had in a while. I saw the Palliative care doctor on Wednesday and he suggested the pain was infection related and may take a few weeks to settle. That did surprise me a little I guess, back to the old forgetting that I am in fact still terminally ill and can't expect things to be the same as they were before. Life is VERY different now.
Well, I might get off to sleep so thanks again for your support and really make sure you make the most of the time you have with your family over the Christmas break. Pretend like it's the Christmas you will see them.
NEVER, NEVER, NEVER GIVE UP
THe boys are certainly happy to have Mummy home.....particularly Andy. That's been a bit harder this time. Normally Andy is OK and Matt is the one who struggles terribly, but Andy hasn't coped very well this time with the whole hospital thing. I don't know what they think is going to happen to me while I am in there or if it is just the fact that I am there and not at home with them. I am guessing it's the latter.
I am still feeling a bit reflective and very emotional about Christmas. I think it's because I didn't expect to be here for Christmas, let alone share it with my beautiful family with extra gifts donated from friends'church group and the lady, Jillan, from kindy who not only gave me the gift vouchers, (which I told you about already), but she also bought a whole heap of presents for the boys. People have been so kind, it almost makes me feel guilty.
I just want to take a moment to thank all of you again. For your love, support, prayers, donations and gifts. They all mean so much to us and I know if I would be beating this disease and fighting back as strongly as I am if I didn't have all the love and support I do. So thank you again and keep it coming! There can never be too many prayers hey!
I still haven't heard anything about starting chemo. I am guessing now that they will probably wait until after Christmas just in case there are any adverse effects or I have a reaction. I am sure they don't want me in hospital over Christmas either.
I am worried about my heart. I have felt it out of beat a few times today and I've had more pain in the past couple of weeks, (since the infection), than I have had in a while. I saw the Palliative care doctor on Wednesday and he suggested the pain was infection related and may take a few weeks to settle. That did surprise me a little I guess, back to the old forgetting that I am in fact still terminally ill and can't expect things to be the same as they were before. Life is VERY different now.
Well, I might get off to sleep so thanks again for your support and really make sure you make the most of the time you have with your family over the Christmas break. Pretend like it's the Christmas you will see them.
NEVER, NEVER, NEVER GIVE UP
Saturday, December 12, 2009
Feeling a bit down...
Well I am sad to say I am writing this from a bed in Westmead hospital. I have been here since yesterday afternoon to help clear a chest infection.
Isn't it amazing how 4 months ago I probably wouldn't have even gone to the doctor for my cough, yet now, because of my compromised heart and lungs due to the cancer, I end up in hospital on IV antibiotics! I know that it's for the best, and that the whole idea is to clear it up fast to make sure there are no complications but I really hate being away from my family.
I think Andy must have jinxed me. Because I had spent most of Thursday evening in bed he came in and said to me, "I don't want you to go to hospital Mummy!" I said, I won't be going to hospital, Mummy just has a bit of a cough.
Sure enough, by lunch time the next day my nurse had decided that we needed to speak to my medical oncologists because I still haven't had my 4th round of chemo as I had put it off because I had the cold. After she rang the oncology team to get their thoughts on when I should start the next cycle they called her back and suggested I be admitted to clear the infection quickly. There was a concern that as it had been hanging around for over a week it can turn into pneumonia fairly quickly. Furthermore, the quicker it's cleared they can get me onto the chemo treatment without compromising my immune system further.
So here I am!
Matt isn't coping well. He cried uncontrollably when he left both last night and tonight. It really breaks my heart.......It makes it hard for me to hold it together too. I like to forget everything going on and pretend our lives are normal, well as normal as possible, and I guess the whole hospital thing is a slap in the face reminder that things aren't normal and they will never be again.
Anyhow, enough about that, Jenelle, my nurse tells me that I am sick because I let myself get run down so she is doubly cranky at me. She doesn't want to see me fall in a screaming heap so I am going to have to take better care of me. I will do it now.....it might take a trip to hospital to scare me into it, but I think I have got the message now. If I don't take care of me, I will be spending more time in here and that's somewhere I don't want to be! So the answer is simple, be good to yourself and rest more.
You know, I am pretty stupid. The next 12 months is going to be pretty ordinary for us and I was looking at the local paper and saw a job that was 20 hours per week. I thought, I could do that, $400 a week would make a huge difference and take the pressure off a bit. I actually entertained this idea for a whole day, then all of a sudden thought, that's right, I am not well am I. I really don't know how I think I could work.....I am constantly in a drug induced state, I can't keep my eyes open for longer than about 4 hours at a time, and what on earth would I do if I was having a bad day! See what I mean.....for a supposed intelligent woman I sure do come up with some stupid thoughts!!!!
Anyway, enough about all of that, I might see if I can find something to watch on TV and get some sleep. I am missing our street Christmas party tonight. I hope they are having fun....I am sure the boys are enjoying it, being able to ride around the street for half the night should be enough of a treat to keep Matt happy I would think. Not sure how Andy will go though, he was incredibly tired earlier so I don't know if he will last the distance. Poor Jason won't really be able to enjoy himself either because he will have to watch out for them the whole time. Oh well, at least he will have a little adult company.
Oh, and I think we may have our au pair! Her name is Joylynn and she is from the US. Unfortunately, I missed the Skype call with her today because I was in here but apparently it went really well. She is looking into getting her visa and should be able to start the Australia day long weekend so that has worked out perfectly!
I am really going now! xxx
NEVER, NEVER, NEVER GIVE UP!
Isn't it amazing how 4 months ago I probably wouldn't have even gone to the doctor for my cough, yet now, because of my compromised heart and lungs due to the cancer, I end up in hospital on IV antibiotics! I know that it's for the best, and that the whole idea is to clear it up fast to make sure there are no complications but I really hate being away from my family.
I think Andy must have jinxed me. Because I had spent most of Thursday evening in bed he came in and said to me, "I don't want you to go to hospital Mummy!" I said, I won't be going to hospital, Mummy just has a bit of a cough.
Sure enough, by lunch time the next day my nurse had decided that we needed to speak to my medical oncologists because I still haven't had my 4th round of chemo as I had put it off because I had the cold. After she rang the oncology team to get their thoughts on when I should start the next cycle they called her back and suggested I be admitted to clear the infection quickly. There was a concern that as it had been hanging around for over a week it can turn into pneumonia fairly quickly. Furthermore, the quicker it's cleared they can get me onto the chemo treatment without compromising my immune system further.
So here I am!
Matt isn't coping well. He cried uncontrollably when he left both last night and tonight. It really breaks my heart.......It makes it hard for me to hold it together too. I like to forget everything going on and pretend our lives are normal, well as normal as possible, and I guess the whole hospital thing is a slap in the face reminder that things aren't normal and they will never be again.
Anyhow, enough about that, Jenelle, my nurse tells me that I am sick because I let myself get run down so she is doubly cranky at me. She doesn't want to see me fall in a screaming heap so I am going to have to take better care of me. I will do it now.....it might take a trip to hospital to scare me into it, but I think I have got the message now. If I don't take care of me, I will be spending more time in here and that's somewhere I don't want to be! So the answer is simple, be good to yourself and rest more.
You know, I am pretty stupid. The next 12 months is going to be pretty ordinary for us and I was looking at the local paper and saw a job that was 20 hours per week. I thought, I could do that, $400 a week would make a huge difference and take the pressure off a bit. I actually entertained this idea for a whole day, then all of a sudden thought, that's right, I am not well am I. I really don't know how I think I could work.....I am constantly in a drug induced state, I can't keep my eyes open for longer than about 4 hours at a time, and what on earth would I do if I was having a bad day! See what I mean.....for a supposed intelligent woman I sure do come up with some stupid thoughts!!!!
Anyway, enough about all of that, I might see if I can find something to watch on TV and get some sleep. I am missing our street Christmas party tonight. I hope they are having fun....I am sure the boys are enjoying it, being able to ride around the street for half the night should be enough of a treat to keep Matt happy I would think. Not sure how Andy will go though, he was incredibly tired earlier so I don't know if he will last the distance. Poor Jason won't really be able to enjoy himself either because he will have to watch out for them the whole time. Oh well, at least he will have a little adult company.
Oh, and I think we may have our au pair! Her name is Joylynn and she is from the US. Unfortunately, I missed the Skype call with her today because I was in here but apparently it went really well. She is looking into getting her visa and should be able to start the Australia day long weekend so that has worked out perfectly!
I am really going now! xxx
NEVER, NEVER, NEVER GIVE UP!
Tuesday, December 8, 2009
Random Acts Of Kindness
This will blow you all away....it did me!
Last night we went to the boys kindy Christmas party. Toward the end of the night we were approached by a lady who has 3 girls going to the centre who had a gift for us, and something for each of the boys.
I was sitting there listening to her talk thinking to myself how UNthoughtful I am, I would never think of getting something for the other families or the kiddies. Yet this lady, Jilly, had not only thought f it but done something about it. She suggested I leave the gift she had given me to open a bit later and she would leave the gifts for the boys at kindy for them to pick up. I now know why she didn't want me to open the gift then and there.
After proceedings came to a close we all climbed into the car and I thought I might open the gift. I untied the ribbon and looked inside the small bag and couldn't figure out what I was looking at so I pulled out the first one....To the Mulcahy family from Siobhan, Dave etc. $25- a coles/myer gift voucher??? I pulled out another. To the Mulcahy family from Jilly, Christian etc. $100- another voucher. There were about 10 vouchers in there of varying amounts and thankfully a letter of explanation. Needless to say, I was a blubbering mess by this point and couldn't read anymore anyway!
It seems that this lady, Jilly, had heard of our recent poor luck and was upset by it. She recently had her 40th birthday and when asked what she wanted from family and friends she told them our story and asked they donate money to us rather than buy her a present and that's exactly what the vouchers were. Are you amazed?!?!?!
Jilly doesn't know me from a bar of soap, yet she took the occassion of a significant birthday for herself and turned it into a fundraising event for someone she knows little about. Thank you so much Jilly, I can't believe people like you exist and I want you to know that your thoughtfulness and generosity does make the world a little brighter for us so you have achieved your goal! What a beautiful person and like so many people like that didn't want a fuss made of what she had done....so this is my little bit of fuss for you. People like you restore our faith in humanity and the goodness inside everyone. When there is so much awful stuff going on in the world, on the news and in the newspapers, it's great to be reminded of the beauty of people. Do something nice for a stranger, it's good for everyone.
Well, that's it for now. A quick update on my health....it's turned into a chest infection now so I am on antibiotics and off the chemo drug until I pick up a bit.
Until next time....
NEVER, NEVER, NEVER GIVE UP!
Last night we went to the boys kindy Christmas party. Toward the end of the night we were approached by a lady who has 3 girls going to the centre who had a gift for us, and something for each of the boys.
I was sitting there listening to her talk thinking to myself how UNthoughtful I am, I would never think of getting something for the other families or the kiddies. Yet this lady, Jilly, had not only thought f it but done something about it. She suggested I leave the gift she had given me to open a bit later and she would leave the gifts for the boys at kindy for them to pick up. I now know why she didn't want me to open the gift then and there.
After proceedings came to a close we all climbed into the car and I thought I might open the gift. I untied the ribbon and looked inside the small bag and couldn't figure out what I was looking at so I pulled out the first one....To the Mulcahy family from Siobhan, Dave etc. $25- a coles/myer gift voucher??? I pulled out another. To the Mulcahy family from Jilly, Christian etc. $100- another voucher. There were about 10 vouchers in there of varying amounts and thankfully a letter of explanation. Needless to say, I was a blubbering mess by this point and couldn't read anymore anyway!
It seems that this lady, Jilly, had heard of our recent poor luck and was upset by it. She recently had her 40th birthday and when asked what she wanted from family and friends she told them our story and asked they donate money to us rather than buy her a present and that's exactly what the vouchers were. Are you amazed?!?!?!
Jilly doesn't know me from a bar of soap, yet she took the occassion of a significant birthday for herself and turned it into a fundraising event for someone she knows little about. Thank you so much Jilly, I can't believe people like you exist and I want you to know that your thoughtfulness and generosity does make the world a little brighter for us so you have achieved your goal! What a beautiful person and like so many people like that didn't want a fuss made of what she had done....so this is my little bit of fuss for you. People like you restore our faith in humanity and the goodness inside everyone. When there is so much awful stuff going on in the world, on the news and in the newspapers, it's great to be reminded of the beauty of people. Do something nice for a stranger, it's good for everyone.
Well, that's it for now. A quick update on my health....it's turned into a chest infection now so I am on antibiotics and off the chemo drug until I pick up a bit.
Until next time....
NEVER, NEVER, NEVER GIVE UP!
Sunday, December 6, 2009
Survival
Feeling a bit reflective this morning so asking the question about survivorship. When do you become a survivor not a patient anymore? Or once you are "terminal" you're sick forever?? I suppose there is no right or wrong answer to that it just means different things to different people. The fact I am still here must be a form of survivorship, musn't it??
Anyway, enough about that. I have 2 things to share. The weekend and this horrendous cold.
The weekend was perfect!
We went to Blue Lagoon at Bateau Bay and we will be frequenting that one a bit once we get passed the Christmas break and school holidays. It was everything the other place wasn't. It was quiet, the amenities were great, the beach was 20m away from our site and we could see the ocean from van. It was pretty cool waking up to a view of the ocean that the most you needed to do to appreciate it was tilt your head slightly!! I didn't know places like that existed so we were completely blown away. They had a great pool area too that was a wonderful place to spend a little time and a place for the boys to make some friends. The pool was kid friendly so really easy to watch all of them and still get a relax myself! I like having the choice of whether to go to the beach or the pool. I don't think I can rant enough about this place, it's a great place and reasonably priced for quick family getaways. Oh, and only being an 1 hour away helps too.
The bad news is I still have this cold. I am coughing up fluoro green stuff which tells me my lungs are not very happy at the moment. This means I can't take my chemo tablets because I don't want to reduce my immune system even more. I have to ring them and find out the official opinion and see what they want me to do. They may think I should go ahead anyway. I don't know, only one way to find out I guess. I'll call this arvo.
I will tell you something stupid....I am sunburned! Of all the people you know would you think I would be close to the most careful in the sun.....just goes to show how easy it is to get burnt and it happens to everyone. I am in excruciating pain. One lot is around my neck and shoulders and is from setting up the camper trailer on Friday the other is on my left leg. What a goose! Apparently, I sunscreened one leg but forgot the other and sure enough I burnt terribly on the non-sunscreened leg at the beach on Saturday. So between the 2 I am a little sore and sorry, serves me right I guess. Next time we pull up at a park the first thing on the agenda will be sunscreen application, never make the same mistake twice.
Well, that's it for now I could go on forever but I won't bore you! xxx
NEVER, NEVER, NEVER GIVE UP!
Anyway, enough about that. I have 2 things to share. The weekend and this horrendous cold.
The weekend was perfect!
We went to Blue Lagoon at Bateau Bay and we will be frequenting that one a bit once we get passed the Christmas break and school holidays. It was everything the other place wasn't. It was quiet, the amenities were great, the beach was 20m away from our site and we could see the ocean from van. It was pretty cool waking up to a view of the ocean that the most you needed to do to appreciate it was tilt your head slightly!! I didn't know places like that existed so we were completely blown away. They had a great pool area too that was a wonderful place to spend a little time and a place for the boys to make some friends. The pool was kid friendly so really easy to watch all of them and still get a relax myself! I like having the choice of whether to go to the beach or the pool. I don't think I can rant enough about this place, it's a great place and reasonably priced for quick family getaways. Oh, and only being an 1 hour away helps too.
The bad news is I still have this cold. I am coughing up fluoro green stuff which tells me my lungs are not very happy at the moment. This means I can't take my chemo tablets because I don't want to reduce my immune system even more. I have to ring them and find out the official opinion and see what they want me to do. They may think I should go ahead anyway. I don't know, only one way to find out I guess. I'll call this arvo.
I will tell you something stupid....I am sunburned! Of all the people you know would you think I would be close to the most careful in the sun.....just goes to show how easy it is to get burnt and it happens to everyone. I am in excruciating pain. One lot is around my neck and shoulders and is from setting up the camper trailer on Friday the other is on my left leg. What a goose! Apparently, I sunscreened one leg but forgot the other and sure enough I burnt terribly on the non-sunscreened leg at the beach on Saturday. So between the 2 I am a little sore and sorry, serves me right I guess. Next time we pull up at a park the first thing on the agenda will be sunscreen application, never make the same mistake twice.
Well, that's it for now I could go on forever but I won't bore you! xxx
NEVER, NEVER, NEVER GIVE UP!
Monday, November 30, 2009
Landing with a thud
Sunday's baptism was lovely. The boys were well behaved and it is always nice to get the family together, but then came Monday morning!
You see I have this terrible problem at the moment that I think I have spoken about recently....I like to think that I am completely well. I am lucky that the drugs I take help this illusion, but that is all it is.....an illusion, but unfortunately I am able to treat my body as though it's real so it suffers the consequences. Hence the Monday morning crash!! I actually haven't been right all day and I am struggling already and it's only 8:30pm!
My nurse actually got cranky with me today for doing too much yesterday. She says she hates to do it, but someone needs to ground me as I will pick the smallest amount of energy and I am running it until it's destroyed. Not only destroying any potential future energy and health but destroying what I have at the moment. I have to remember that I am sick, and I MUST rest to beat this thing. She actually put it very well....she said that every moment I am fighting sleep, I am using energy that should be fighting the disease. I don't mean to be a bad patient, it just is all a bit surreal still, and now even more so.....I wasn't supposed to be here.......that's a really weird feeling. I don't know how to explain it, but it's like I am cheating death, somehow doing the wrong thing....anyway, I can't put it better than that so I'll leave it there and hope that you will understand what I am trying to say.
My nurse's job is to keep my quality of life good and make sure I am looking after myself, unfortunately that sometimes means she needs to say stuff I don't want to hear like it's OK to be thinking I will get to Christmas with no hiccoughs but that expecting to get to moving day, which is 9 weeks without anything going wrong may be a little too optimistic. Things can change in a heartbeat, and as my doctors said at the last scan results it can all turn bad in a heartbeat. They aren't being negative, they have seen it happen lots of times. People stop taking care of themselves and they don't want me to do that!
So I will make sure I take more care, and rest everyday and remember I am not super woman and that I am still sick.
Well, I'm off to sleep now, for some well earned rest! xxx
NEVER, NEVER, NEVER GIVE UP!!!
You see I have this terrible problem at the moment that I think I have spoken about recently....I like to think that I am completely well. I am lucky that the drugs I take help this illusion, but that is all it is.....an illusion, but unfortunately I am able to treat my body as though it's real so it suffers the consequences. Hence the Monday morning crash!! I actually haven't been right all day and I am struggling already and it's only 8:30pm!
My nurse actually got cranky with me today for doing too much yesterday. She says she hates to do it, but someone needs to ground me as I will pick the smallest amount of energy and I am running it until it's destroyed. Not only destroying any potential future energy and health but destroying what I have at the moment. I have to remember that I am sick, and I MUST rest to beat this thing. She actually put it very well....she said that every moment I am fighting sleep, I am using energy that should be fighting the disease. I don't mean to be a bad patient, it just is all a bit surreal still, and now even more so.....I wasn't supposed to be here.......that's a really weird feeling. I don't know how to explain it, but it's like I am cheating death, somehow doing the wrong thing....anyway, I can't put it better than that so I'll leave it there and hope that you will understand what I am trying to say.
My nurse's job is to keep my quality of life good and make sure I am looking after myself, unfortunately that sometimes means she needs to say stuff I don't want to hear like it's OK to be thinking I will get to Christmas with no hiccoughs but that expecting to get to moving day, which is 9 weeks without anything going wrong may be a little too optimistic. Things can change in a heartbeat, and as my doctors said at the last scan results it can all turn bad in a heartbeat. They aren't being negative, they have seen it happen lots of times. People stop taking care of themselves and they don't want me to do that!
So I will make sure I take more care, and rest everyday and remember I am not super woman and that I am still sick.
Well, I'm off to sleep now, for some well earned rest! xxx
NEVER, NEVER, NEVER GIVE UP!!!
Thursday, November 26, 2009
You have to wonder
Firstly, at my stupidity! Secondly, at other's incompetence!
I will start with my stupidity.......it should come as no shock that the multitude of medication I take keeps me feeling pretty good, well relatively speaking anyway. It is important now that I take tablets rather than have my trusty pump that I take my drugs at the correct time every day to ensure the consistency of treatment. While I know this, I seem to struggle to hit the right times every day but last night I hit a new high of stupidity! I didn't take my tablets at all!!! I completely forgot! Needless to say, I feel like a truck has hit me this morning and will probably take the whole day to get back to normal again. The drugs are slow release so they take 4 hours after taking them to do anything at all. I was supposed to take them at 7pm but realised this morning a 7am I had missed them as I took my morning dose, so I missed a whole dose and of course by 7am there is nothing left in my system so it explains the sweaty, miserable in pain lump of person I have been over night and this morning. What a goose! Hopefully, won't be stupid enough to make that mistake again, bad memories can cause all sorts of issues!
Now for the incompetence.....BANKS!!!!! As you also now, we are in the process of buying a house, we had to extend the cooling off period last week because at the last minute the bank decided they need to do a valuation on the house. Why, I don't know but maybe they want to feel like they are doing something useful. Anyway, we requested an extension in the cooling off period and the vendors allowed however they wanted to extend settlement by the same amount, which doesn't work because we will be past the lease and we would have to live in a motel with all our stuff in storage until settlement date! Anyway, the bank have had a week to organise and finalise the valuation. But as of yesterday afternoon, they still had not even received the valuation report let alone started evaluating it for final approval. It seems they didn't book the valuation until Tuesday this week so the company didn't do it until 10:30am Wednesday. As far as the valuers are concerned they have 3 days to get the report to the bank so they aren't rushing to get it in. Hence, we are on the last day of cooling off and still have no loan approval from the bank. It seems that the hold up with the whole thing is that the documentation was marked for approval in principle not unconditional approval so they didn't realise there was any urgency. The most ridiculous thing is that we got conditional approval last week and as I said I really don't see the issue with the valuation. Sadly, can't put brains in statues and there isn't a thing we can do about it. Let's just hope that when we go back and ask for a further extension the vendors don't say no and we lose our deposit as well as the house. I am so angry with the bank. It's NAB by the way, so I would strongly advise against usng them for a home loan based on their incompetence in this case, I knew we should have stayed with St George!!! Bugger! The only reason we changed was the package was slightly cheaper and the rate was slightly lower, so silly now. And of course it's way too late to change banks now!
On a completely different note, Matt's gradution was gorgeous. I cried of course, and he was completely oblivious to the significance of the occasion! Kids are amazing aren't they.I feel a bit sad too that he won't know anyone at his new school. There were a whole list of kids going from his kindy to West Pennant Hills Public, but of course none for Kellyville Public. I just think about how much I hate going to new things when I don't know anyone and how tough it is for little kids these days.........of well, I'm sure he will be fine, and hopefully won't take long to make some new friends.
Well, that's my whinge for today, I think I covered the major points fairly thoroughly!
NEVER, NEVER, NEVER GIVE UP!
I will start with my stupidity.......it should come as no shock that the multitude of medication I take keeps me feeling pretty good, well relatively speaking anyway. It is important now that I take tablets rather than have my trusty pump that I take my drugs at the correct time every day to ensure the consistency of treatment. While I know this, I seem to struggle to hit the right times every day but last night I hit a new high of stupidity! I didn't take my tablets at all!!! I completely forgot! Needless to say, I feel like a truck has hit me this morning and will probably take the whole day to get back to normal again. The drugs are slow release so they take 4 hours after taking them to do anything at all. I was supposed to take them at 7pm but realised this morning a 7am I had missed them as I took my morning dose, so I missed a whole dose and of course by 7am there is nothing left in my system so it explains the sweaty, miserable in pain lump of person I have been over night and this morning. What a goose! Hopefully, won't be stupid enough to make that mistake again, bad memories can cause all sorts of issues!
Now for the incompetence.....BANKS!!!!! As you also now, we are in the process of buying a house, we had to extend the cooling off period last week because at the last minute the bank decided they need to do a valuation on the house. Why, I don't know but maybe they want to feel like they are doing something useful. Anyway, we requested an extension in the cooling off period and the vendors allowed however they wanted to extend settlement by the same amount, which doesn't work because we will be past the lease and we would have to live in a motel with all our stuff in storage until settlement date! Anyway, the bank have had a week to organise and finalise the valuation. But as of yesterday afternoon, they still had not even received the valuation report let alone started evaluating it for final approval. It seems they didn't book the valuation until Tuesday this week so the company didn't do it until 10:30am Wednesday. As far as the valuers are concerned they have 3 days to get the report to the bank so they aren't rushing to get it in. Hence, we are on the last day of cooling off and still have no loan approval from the bank. It seems that the hold up with the whole thing is that the documentation was marked for approval in principle not unconditional approval so they didn't realise there was any urgency. The most ridiculous thing is that we got conditional approval last week and as I said I really don't see the issue with the valuation. Sadly, can't put brains in statues and there isn't a thing we can do about it. Let's just hope that when we go back and ask for a further extension the vendors don't say no and we lose our deposit as well as the house. I am so angry with the bank. It's NAB by the way, so I would strongly advise against usng them for a home loan based on their incompetence in this case, I knew we should have stayed with St George!!! Bugger! The only reason we changed was the package was slightly cheaper and the rate was slightly lower, so silly now. And of course it's way too late to change banks now!
On a completely different note, Matt's gradution was gorgeous. I cried of course, and he was completely oblivious to the significance of the occasion! Kids are amazing aren't they.I feel a bit sad too that he won't know anyone at his new school. There were a whole list of kids going from his kindy to West Pennant Hills Public, but of course none for Kellyville Public. I just think about how much I hate going to new things when I don't know anyone and how tough it is for little kids these days.........of well, I'm sure he will be fine, and hopefully won't take long to make some new friends.
Well, that's my whinge for today, I think I covered the major points fairly thoroughly!
NEVER, NEVER, NEVER GIVE UP!
Wednesday, November 25, 2009
A real quickie...
Just a very quick note to let you know that I got a phone call yesterday that the have approved the oral chemo drug. Hooray, no more infusions!
I will probably start on it in a couple of weeks but I am happy it's finally been given the OK. They approved 3 rounds as well so that's pretty good apparently.
Anyway, just wanted to update you on the very latest, we are getting ready for Matt's graduation from Kindy this morning....how sad, my baby boy growing up!
Until next time xx
NEVER, NEVER, NEVER GIVE UP!
I will probably start on it in a couple of weeks but I am happy it's finally been given the OK. They approved 3 rounds as well so that's pretty good apparently.
Anyway, just wanted to update you on the very latest, we are getting ready for Matt's graduation from Kindy this morning....how sad, my baby boy growing up!
Until next time xx
NEVER, NEVER, NEVER GIVE UP!
Tuesday, November 24, 2009
Latest news......
Well, I had my appointment yesterday with the Medical Oncology team. I can't believe I was the only person there but they were still running really late!
Anyway, no news yet on the oral chemo drug. It seems it's a good thing that they are thinking about it, apparently the alternative is a flat out no so I am pleased to have avoided that one. The thought of going through another infusion really doesn't appeal at all! They did book me in for another "Just in case" I change my mind about the infusion and decide to go ahead now. Not bloody likely I don't think. They also discussed a porta cath wih me. That's were they put a permanent line in so each time they aren't poking around looking for a vein. They put it in your chest and it is a procedure with stitches to get it in, but once it's in it's done for good I think. There are a few risks involved in having the porta cath inserted but hopefully I won't have to worry as that oral medication will be approved.
The doctors were really happy with my scan results. They are not worried about the bone mets yet as they are not causing me any grief. Apparently, they will only do something if there is pain or if it's in one of the long bones because there is a risk of breakage as the cancer eats away at it.
On a totally different topic, thanks for the caravan park recommendations Bec. We will be staying at Blue Lagoon not this weekend but the weekend after. I am really looking forward to it all ready. It can't be as bad as Toowon Bay and we couldn't be unlucky enough to have noisy horrible patrons again I'm sure. The park looks a lot smaller so it should work out well.
We are also looking for a new Au Pair at the moment. It's taking a little longer than it did the first time around. They are all hiding out!! Maybe they have heard about us now!
Well that's about it for now.
NEVER, NEVER, NEVER GIVE UP!
Anyway, no news yet on the oral chemo drug. It seems it's a good thing that they are thinking about it, apparently the alternative is a flat out no so I am pleased to have avoided that one. The thought of going through another infusion really doesn't appeal at all! They did book me in for another "Just in case" I change my mind about the infusion and decide to go ahead now. Not bloody likely I don't think. They also discussed a porta cath wih me. That's were they put a permanent line in so each time they aren't poking around looking for a vein. They put it in your chest and it is a procedure with stitches to get it in, but once it's in it's done for good I think. There are a few risks involved in having the porta cath inserted but hopefully I won't have to worry as that oral medication will be approved.
The doctors were really happy with my scan results. They are not worried about the bone mets yet as they are not causing me any grief. Apparently, they will only do something if there is pain or if it's in one of the long bones because there is a risk of breakage as the cancer eats away at it.
On a totally different topic, thanks for the caravan park recommendations Bec. We will be staying at Blue Lagoon not this weekend but the weekend after. I am really looking forward to it all ready. It can't be as bad as Toowon Bay and we couldn't be unlucky enough to have noisy horrible patrons again I'm sure. The park looks a lot smaller so it should work out well.
We are also looking for a new Au Pair at the moment. It's taking a little longer than it did the first time around. They are all hiding out!! Maybe they have heard about us now!
Well that's about it for now.
NEVER, NEVER, NEVER GIVE UP!
Saturday, November 21, 2009
We survived....just!!
What a laugh....or cry whichever way you choose to look at it! I would rather laugh myself. What started out as an absolute disaster ended up kind of OK in the end.
On arrival at Toowoon Bay caravan park it started raining. This we could cope with. Even for a couple of novice campers like ourselves we managed to contain the kids and set up the camper trailer. Where we made our mistake was we decided we would put up the awning even though the wind had picked up and what was just a bit of rain was quickly turning into a bit of a nasty storm. We got the poles up but hadn't got the ropes on when an enormous gust of wind blew up the whole awning and flipped it over the roof of the caravan.
The result was 3 snapped poles....2 from the roof and one of the upright poles, and one of the velco attachments torn. Needless to say, we were unable to use the awning for the remainder of the weekend. On the upside, the poles are replacable and on special at the moment. We picked the right month to break the poles! And better still the awning roof has no holes, how lucky is that?!
Once over the initial disaster, things got a little better except there were a couple of rowdy groups that the park management failed to keep in check. So both Friday and Saturday nights saw loud chatting and music until well past 2am. Not happy Jan! I know not all parks are like that, so we won't be gracing Toowoon Bay again soon, or maybe even ever.
A very different experience that's for sure. We are used to individual accommodation, not shared amenities, quiet nights and a little more luxury! I could certainly get used to it though, minus the noisy neighbours. I can't believe how rude some people are.....
Jason's reversing of the trailer was perfect, nothing to be nervous about at all!
Well that's it for now, any recommendations for nice quiet well managed parks would be appreciated for our next weekend away. Maybe a place with ensuite sites?
Anyway, take care until next time.
NEVER, NEVER, NEVER GIVE UP!!
On arrival at Toowoon Bay caravan park it started raining. This we could cope with. Even for a couple of novice campers like ourselves we managed to contain the kids and set up the camper trailer. Where we made our mistake was we decided we would put up the awning even though the wind had picked up and what was just a bit of rain was quickly turning into a bit of a nasty storm. We got the poles up but hadn't got the ropes on when an enormous gust of wind blew up the whole awning and flipped it over the roof of the caravan.
The result was 3 snapped poles....2 from the roof and one of the upright poles, and one of the velco attachments torn. Needless to say, we were unable to use the awning for the remainder of the weekend. On the upside, the poles are replacable and on special at the moment. We picked the right month to break the poles! And better still the awning roof has no holes, how lucky is that?!
Once over the initial disaster, things got a little better except there were a couple of rowdy groups that the park management failed to keep in check. So both Friday and Saturday nights saw loud chatting and music until well past 2am. Not happy Jan! I know not all parks are like that, so we won't be gracing Toowoon Bay again soon, or maybe even ever.
A very different experience that's for sure. We are used to individual accommodation, not shared amenities, quiet nights and a little more luxury! I could certainly get used to it though, minus the noisy neighbours. I can't believe how rude some people are.....
Jason's reversing of the trailer was perfect, nothing to be nervous about at all!
Well that's it for now, any recommendations for nice quiet well managed parks would be appreciated for our next weekend away. Maybe a place with ensuite sites?
Anyway, take care until next time.
NEVER, NEVER, NEVER GIVE UP!!
Thursday, November 19, 2009
A bit up and down
I got my scan results today, and it was a bit of a mixed bag. On the positive side, all the tumours in my lungs and liver have shrunk and all the fluid around my lungs has gone. One of the tumours in my heart has shrunk and the fluid around my heart has reduced which is all fantastic news and probably explains why my coughing has reduced so much. Which in turn has reduced the pain I was in around my chest.
On the negative, one of the tumours in my heart increased quite significantly and the tumours in my breasts and abdomen have also become more pronounced. The worst bit of news though is I now have bone metastasis, which means the cancer has now travelled into my bones. At the moment it is just in my left hip, and I am hoping that's as far as it will go!! I will have to start concentrating on getting it out of there now too.
I am not surprised about the tumour in the heart growing as I have been experiencing a lot of tightness in my chest and a bit of shortness of breath. That's really what I take most of my breakthrough Morphine for, tightness in the chest, I don't have much pain anymore.
So I'm not really sure how I feel about all of that, of course I am thrilled about the reductions, but I can't help but be disappointed about the progression to my bones. Shit I hate cancer! It has no heart does it! It truly is a beast.
Anyway, on a brighter note we are going for our first trip in the camper trailer tomorrow. Just for the weekend but nonetheless it will be an adventure and the boys are so very excited. Matty couldn't go to sleep tonight because he is so excited about tomorrow night, sleeping in the camper trailer. We are jst going up to Toowoon Bay on the Central Coast. It's really nice up there so I am really looking forward to it too.
I am not feeling so flash tonight, I am really crook in the tummy, don't know what's brought that on......probably dinner, I cooked for the first time in months!
I might make a dash for bed, I'll fill you in on our weekend away when I get back xxx
NEVER, NEVER, NEVER GIVE UP!
On the negative, one of the tumours in my heart increased quite significantly and the tumours in my breasts and abdomen have also become more pronounced. The worst bit of news though is I now have bone metastasis, which means the cancer has now travelled into my bones. At the moment it is just in my left hip, and I am hoping that's as far as it will go!! I will have to start concentrating on getting it out of there now too.
I am not surprised about the tumour in the heart growing as I have been experiencing a lot of tightness in my chest and a bit of shortness of breath. That's really what I take most of my breakthrough Morphine for, tightness in the chest, I don't have much pain anymore.
So I'm not really sure how I feel about all of that, of course I am thrilled about the reductions, but I can't help but be disappointed about the progression to my bones. Shit I hate cancer! It has no heart does it! It truly is a beast.
Anyway, on a brighter note we are going for our first trip in the camper trailer tomorrow. Just for the weekend but nonetheless it will be an adventure and the boys are so very excited. Matty couldn't go to sleep tonight because he is so excited about tomorrow night, sleeping in the camper trailer. We are jst going up to Toowoon Bay on the Central Coast. It's really nice up there so I am really looking forward to it too.
I am not feeling so flash tonight, I am really crook in the tummy, don't know what's brought that on......probably dinner, I cooked for the first time in months!
I might make a dash for bed, I'll fill you in on our weekend away when I get back xxx
NEVER, NEVER, NEVER GIVE UP!
Tuesday, November 17, 2009
I've been a bit slack...
I haven't had that much to report the past few days, so I haven't written. Also, when I am feeling ordinary I tend not to write because I don't like to sook too much!!
Anyway, the past couple of days I have been pretty bad. Monday I was really nauseous and tired all day, one of those can't get out of bed days, and yesterday was much the same but slightly better. I have also developed a rash on my face...God only knows what that is from, time will tell I guess. My beautiful nurse has got me back on the happy tablets. I started yesterday, so should find some improvement today, hooray for the happy tablets!
I have found though, that feeling good all the time can be troublesome. I forget that I am ill. On one hand that can be good, because the positive attitude certainly aids recovery but on the other, emotionally I come crashing down when I feel bad and am reminded of the reality. It's tough....like everything else in life you have to find the balance that works, well enough to get on with life, but not so well I forget why I'm here!
I wondered why my nurse was so worried about me emotionally, now I know why, she has seen it enough times as a palliative care nurse, the massive fall after the high. So I just have to be sure that this time around on the happy tablets I don't lose touch of reality! But enjoy feeling well just the same.
If anyone can explain how I can possibly have a headache when I am so much morphine I would be really interested to know. Or even better still, Andy accidentally bent back my big toenail yesterday, it still hurts now! When people come in from car crashes on the TV they are given less morphine than I take and my toe still hurts....what's doing with that????
Anyway, enough about that! No more news on the house yet, we should get the building inspection report back today and the pest report tomorrow, and the loan should be approved today as well. Exciting times ahead. We will have to start going through everything now to be ready in time for moving, we have too much junk! I am such a hoarder and I need to stop it or I will end up on one of those current affair shows as the crazy junk lady! Speaking of shows the RPA episode with my friend Jay that I may be on is on tonight so don't miss it. Even if I'm not on it, there will be something about the support group I attend and of course a follow up to Jay's story who is a fellow Melanoma patient, or should I say Melanoma survivor!
I am off to have some scans this arvo, so I will have the results tomorrow. I don't know what to expect this time.....the same or better I think. Definitely not worse. I will let you know tomorrow when I have the results, assuming I don't break my fast again today and have to reschedule again!!
Anyway, I think that's about it for now. I will post tomorrow with the results. xxx
NEVER, NEVER, NEVER GIVE UP
Anyway, the past couple of days I have been pretty bad. Monday I was really nauseous and tired all day, one of those can't get out of bed days, and yesterday was much the same but slightly better. I have also developed a rash on my face...God only knows what that is from, time will tell I guess. My beautiful nurse has got me back on the happy tablets. I started yesterday, so should find some improvement today, hooray for the happy tablets!
I have found though, that feeling good all the time can be troublesome. I forget that I am ill. On one hand that can be good, because the positive attitude certainly aids recovery but on the other, emotionally I come crashing down when I feel bad and am reminded of the reality. It's tough....like everything else in life you have to find the balance that works, well enough to get on with life, but not so well I forget why I'm here!
I wondered why my nurse was so worried about me emotionally, now I know why, she has seen it enough times as a palliative care nurse, the massive fall after the high. So I just have to be sure that this time around on the happy tablets I don't lose touch of reality! But enjoy feeling well just the same.
If anyone can explain how I can possibly have a headache when I am so much morphine I would be really interested to know. Or even better still, Andy accidentally bent back my big toenail yesterday, it still hurts now! When people come in from car crashes on the TV they are given less morphine than I take and my toe still hurts....what's doing with that????
Anyway, enough about that! No more news on the house yet, we should get the building inspection report back today and the pest report tomorrow, and the loan should be approved today as well. Exciting times ahead. We will have to start going through everything now to be ready in time for moving, we have too much junk! I am such a hoarder and I need to stop it or I will end up on one of those current affair shows as the crazy junk lady! Speaking of shows the RPA episode with my friend Jay that I may be on is on tonight so don't miss it. Even if I'm not on it, there will be something about the support group I attend and of course a follow up to Jay's story who is a fellow Melanoma patient, or should I say Melanoma survivor!
I am off to have some scans this arvo, so I will have the results tomorrow. I don't know what to expect this time.....the same or better I think. Definitely not worse. I will let you know tomorrow when I have the results, assuming I don't break my fast again today and have to reschedule again!!
Anyway, I think that's about it for now. I will post tomorrow with the results. xxx
NEVER, NEVER, NEVER GIVE UP
Friday, November 13, 2009
Some changes!
We have some very exciting news......we have put a deposit on a house! How exciting!!!
It all happened very quickly. As you may have been aware, we were looking at a house in Castle Hill. The owner was really painful. We had started negotiations but she was greedy and a little bit stupid and now of course she has missed out entirely because we have bought somewhere else.
Also, do you remember the house that we really liked in Kellyville that we missed out on? That experience was still very fresh in our minds. With the market the way it is at the moment we needed to move quickly and that's exactly what we did.
We got a phone call from the agent saying he had just listed a property thatwas similar to the one we had missed out on. It was in Kellyville, was only 8 years old and he believed would suit us perfectly. We made an appointment to see it that afternoon, which was Thursday at 5:30pm.
We loved it. It has huge bedrooms and bathrooms. It has plenty of living space too and a pool and grassed yard out the back for the boys. The kitchen is awesome, it's got one of those cooktops with the big grill in the middle and a purified water tap. It also has a walk in pantry so that ticks some more boxes! When we left, we were sure we wanted it so rang the real estate and made our offer. We signed the contract yesterday morning so we are currently in the cooling off period, just like that.
So we will soon be residents of Kellyville, (closer to you Rosanne!!), assuming all goes fine with the settlement, I don't expect it not to, but you just don't know and I am nervous about the bank lending us the money......anyway, we will know soon enough the waiting is horrible!
I didn't end up having my scan yesterday.......I forgot about fasting and had a chocolate so I had to reschedule. The earliest I could get in was Wednesday so that's it! I expect they will be the same as last time, no progression of disease!
I am going well without my pump so far. The freedom is great and it's so flexible too. I have a little headache which apparently is withdrawal but it will pass eventually.
I am off to a birthday party now and supposed to be going to a BBQ this afternoon so I have a busy day planned, even though I could do with a sleep!
Anyway, better get going catch up again soon xxxx
NEVER, NEVER, NEVER GIVE UP
It all happened very quickly. As you may have been aware, we were looking at a house in Castle Hill. The owner was really painful. We had started negotiations but she was greedy and a little bit stupid and now of course she has missed out entirely because we have bought somewhere else.
Also, do you remember the house that we really liked in Kellyville that we missed out on? That experience was still very fresh in our minds. With the market the way it is at the moment we needed to move quickly and that's exactly what we did.
We got a phone call from the agent saying he had just listed a property thatwas similar to the one we had missed out on. It was in Kellyville, was only 8 years old and he believed would suit us perfectly. We made an appointment to see it that afternoon, which was Thursday at 5:30pm.
We loved it. It has huge bedrooms and bathrooms. It has plenty of living space too and a pool and grassed yard out the back for the boys. The kitchen is awesome, it's got one of those cooktops with the big grill in the middle and a purified water tap. It also has a walk in pantry so that ticks some more boxes! When we left, we were sure we wanted it so rang the real estate and made our offer. We signed the contract yesterday morning so we are currently in the cooling off period, just like that.
So we will soon be residents of Kellyville, (closer to you Rosanne!!), assuming all goes fine with the settlement, I don't expect it not to, but you just don't know and I am nervous about the bank lending us the money......anyway, we will know soon enough the waiting is horrible!
I didn't end up having my scan yesterday.......I forgot about fasting and had a chocolate so I had to reschedule. The earliest I could get in was Wednesday so that's it! I expect they will be the same as last time, no progression of disease!
I am going well without my pump so far. The freedom is great and it's so flexible too. I have a little headache which apparently is withdrawal but it will pass eventually.
I am off to a birthday party now and supposed to be going to a BBQ this afternoon so I have a busy day planned, even though I could do with a sleep!
Anyway, better get going catch up again soon xxxx
NEVER, NEVER, NEVER GIVE UP
Monday, November 9, 2009
Not happy Jan.....
So, I went to my appointment yesterday afternoon hoping for some news about putting me forward for the b-raf trial again. Not to be the case!!!
It seems that there was some misunderstanding about what needed to happen for me to get on the trial. I was under the impression that I had to have 2 consecutive shrinkages on the tumour in my heart and then they could put me forward again. Apparently, what I need is my heart strength to improve. It needs to be the same as a normal person or at least double the strength it was, and even then it will be a struggle to get me onto the trial because of the history of heart trouble. Furthermore, even though the tumours have shrunk the damage to my heart may be permanent and therefore there will never be improvement in the strength!
So that was a bit of a bummer....no trial in the foreseeable future, but that's OK I can beat it anyway. In the meantime, any suggestions on heart strengthening exercises/ medications/ remedies and any prayers for that to happen are gladly received. I plan on looking at some herbal remedies that are known as heart tonics and see what I can come up with there.
I really didn't want to have anymore chemo either. I find the whole experience traumatic. From the infusion to how I feel afterwards. Some people can deal with the whole thing. Not me. I am a bit too much of a sook and would rather find an alternative. Apparently, you can take my chemo drug orally. So they are applying on my behalf to allow me permission to take the drug orally. It's not government funded so there have to be compassionate grounds to get approval. The doctor seemed to be fairly confident that could happen. At least I wouldn't have to go through the whole needle, infusion, pain part but I would still have the same side effects. Hopefully those can be controlled as well as the happy drugs did last time.
On a completely different topic, we took the camper trailer to a friends place that live on a property to practice putting up and down and reversing. It took us most of the late afternoon to put it up and down and Jason had just a couple of reverses so he needs a bit more practice. We will go out again on Thursday to do it all again and hopefully be experts before pulling up at the caravan park for the first time in the next week or so!
I also may be getting a change to my medication. Instead of the pump I may go back to taking the drugs orally. That will give me more freedom as far as going away goes because I don't need a nurse to change it everyday or the site needles changed, but also things like swimming will not be a drama because I won't have all the needles to cover up and try to keep dry and away from infection. Hopefully, the change will be effective because it will make a fairly big difference to my lifestyle and definitely with travelling. I meet with the palliative care doctor about that tomorrow morning so I expect the change will happen fairly quickly it will just be a matter of monitoring it.....hopefully out of hospital.
Well, enough for now xxxxx
NEVER, NEVER, NEVER GIVE UP!
It seems that there was some misunderstanding about what needed to happen for me to get on the trial. I was under the impression that I had to have 2 consecutive shrinkages on the tumour in my heart and then they could put me forward again. Apparently, what I need is my heart strength to improve. It needs to be the same as a normal person or at least double the strength it was, and even then it will be a struggle to get me onto the trial because of the history of heart trouble. Furthermore, even though the tumours have shrunk the damage to my heart may be permanent and therefore there will never be improvement in the strength!
So that was a bit of a bummer....no trial in the foreseeable future, but that's OK I can beat it anyway. In the meantime, any suggestions on heart strengthening exercises/ medications/ remedies and any prayers for that to happen are gladly received. I plan on looking at some herbal remedies that are known as heart tonics and see what I can come up with there.
I really didn't want to have anymore chemo either. I find the whole experience traumatic. From the infusion to how I feel afterwards. Some people can deal with the whole thing. Not me. I am a bit too much of a sook and would rather find an alternative. Apparently, you can take my chemo drug orally. So they are applying on my behalf to allow me permission to take the drug orally. It's not government funded so there have to be compassionate grounds to get approval. The doctor seemed to be fairly confident that could happen. At least I wouldn't have to go through the whole needle, infusion, pain part but I would still have the same side effects. Hopefully those can be controlled as well as the happy drugs did last time.
On a completely different topic, we took the camper trailer to a friends place that live on a property to practice putting up and down and reversing. It took us most of the late afternoon to put it up and down and Jason had just a couple of reverses so he needs a bit more practice. We will go out again on Thursday to do it all again and hopefully be experts before pulling up at the caravan park for the first time in the next week or so!
I also may be getting a change to my medication. Instead of the pump I may go back to taking the drugs orally. That will give me more freedom as far as going away goes because I don't need a nurse to change it everyday or the site needles changed, but also things like swimming will not be a drama because I won't have all the needles to cover up and try to keep dry and away from infection. Hopefully, the change will be effective because it will make a fairly big difference to my lifestyle and definitely with travelling. I meet with the palliative care doctor about that tomorrow morning so I expect the change will happen fairly quickly it will just be a matter of monitoring it.....hopefully out of hospital.
Well, enough for now xxxxx
NEVER, NEVER, NEVER GIVE UP!
Sunday, November 8, 2009
The Zoo
The zoo was great!
I would highly recommend it to anyone. Because we stayed at the zoo they have a set itinerary for you to follow that includes 3 behind the scenes safaris. Unfortunately, we missed the first one because of the stupid train, (I'll tell you about that one later!), but we managed to catch the last 2. There was one after dinner, which was also included in the price, where we went to the lions wolves, hippos and a wombat. We fed all of them, and of course because it was night time they were very active. It was great. Before brekky the next morning we went to see a black rhino, a Bongo, which is a kind of antelope, the elephant and gibbons. They were all great fun too, my particular favourite from the morning group was feeding the rhino. He was very cute.
We were left a full day then to explore the zoo on our own. Unfortunately, mostly due to lack of sleep, I wasn't in my greatest form, so we had to do the drive around zoo experience rather than taking our time either walking or on bikes. It meant an afternoon rest for us all which was greatly needed!! We did manage to see everything though so we got the whole experience.
Now the train trip!! We left Sydney 40 mins late, but on top of that lost nearly an hour on the trip. Not good with 3 youngsters and not much to entertain them on the train. All things considered they did incredibly well but I vowed we wouldn't be getting back on that train to come home. Because of it's lateness, we missed the first safari at the zoo which included visits to the tigers and meerkats. Anyone that knows me knows my favourite animnals are tigers with meerkats a close second.
We ended up hiring a car to get back, yes it cost a small fortune but was worth every cent in my opinion!!
Now, the house. By the time we rang up to make our offer, it had already sold. Do you believe that. We were terribly disappointed but obviously, it wasn't meant to be. Instead we are now pursuing the Castle Hill house. We put in an offer yesterday but haven't heard anything back at this stage. I expect that we should have an agreed price by the end of the day.
Today is quite a big day.....we are about to go and pick up the camper trailer. How exciting!!! Can't wait.
Then this afternoon I have an appointment with my oncologist so we can reassess what to do about the b-raf thing. I think they should be able to put me forward again now after another set of positive scans. I will have an answer though on that one after my appointment this afternoon, so I will update you then.
I think that's everything for now so look forward to an update later.
Until then xxxx
NEVER, NEVER, NEVER GIVE UP.
I would highly recommend it to anyone. Because we stayed at the zoo they have a set itinerary for you to follow that includes 3 behind the scenes safaris. Unfortunately, we missed the first one because of the stupid train, (I'll tell you about that one later!), but we managed to catch the last 2. There was one after dinner, which was also included in the price, where we went to the lions wolves, hippos and a wombat. We fed all of them, and of course because it was night time they were very active. It was great. Before brekky the next morning we went to see a black rhino, a Bongo, which is a kind of antelope, the elephant and gibbons. They were all great fun too, my particular favourite from the morning group was feeding the rhino. He was very cute.
We were left a full day then to explore the zoo on our own. Unfortunately, mostly due to lack of sleep, I wasn't in my greatest form, so we had to do the drive around zoo experience rather than taking our time either walking or on bikes. It meant an afternoon rest for us all which was greatly needed!! We did manage to see everything though so we got the whole experience.
Now the train trip!! We left Sydney 40 mins late, but on top of that lost nearly an hour on the trip. Not good with 3 youngsters and not much to entertain them on the train. All things considered they did incredibly well but I vowed we wouldn't be getting back on that train to come home. Because of it's lateness, we missed the first safari at the zoo which included visits to the tigers and meerkats. Anyone that knows me knows my favourite animnals are tigers with meerkats a close second.
We ended up hiring a car to get back, yes it cost a small fortune but was worth every cent in my opinion!!
Now, the house. By the time we rang up to make our offer, it had already sold. Do you believe that. We were terribly disappointed but obviously, it wasn't meant to be. Instead we are now pursuing the Castle Hill house. We put in an offer yesterday but haven't heard anything back at this stage. I expect that we should have an agreed price by the end of the day.
Today is quite a big day.....we are about to go and pick up the camper trailer. How exciting!!! Can't wait.
Then this afternoon I have an appointment with my oncologist so we can reassess what to do about the b-raf thing. I think they should be able to put me forward again now after another set of positive scans. I will have an answer though on that one after my appointment this afternoon, so I will update you then.
I think that's everything for now so look forward to an update later.
Until then xxxx
NEVER, NEVER, NEVER GIVE UP.
Monday, November 2, 2009
Happy Melbourne Cup!
I don't have any bets on, I think for the first time in my adult life! What's going on??
I am still very happy with my happy drugs. I only have one more day to go and then I start to come off them. This morning, I actually got Hamish up and fed him. I found I had the strength and energy to hold him and that's the first time since I got sick in August. Amazing what one little tablet can do hey! It's a shame you can only take them for a short amount of time, it would be great to be feeling good all the time. Apparently some residual "goodness" may hang over.
To completely change the subject, we haven't made an offer on the house yet. We are playing games, which I personally don't understand, with the agent. Jason doesn't want him to know how keen we are. I don't really see the point because as soon as we make an offer he will know we are keen won't he?? Am I missing something here?
I am still pretty excited though. The more I think about the house, the more perfect it is for us. I just can't wait to get out of this house I think. It's been such a bug bear with it's dampness and mould. I can't wait to be out of here! There are some good memories in this house but they are mostly overshadowed by it's problems. Man, we will miss our neighbours though. They are and have been great in the past 2 years. Shame we can't take them with us!!!
I think Jason is planning on putting in an offer today on the house so I will keep you posted.
Not much else to share. We are off to the zoo tomorrow can't wait, so I won't be writing for a couple of days now, probably not until Saturday unless to tell you we have the house!
Take care and love to all xxxx
NEVER, NEVER, NEVER GIVE UP
I am still very happy with my happy drugs. I only have one more day to go and then I start to come off them. This morning, I actually got Hamish up and fed him. I found I had the strength and energy to hold him and that's the first time since I got sick in August. Amazing what one little tablet can do hey! It's a shame you can only take them for a short amount of time, it would be great to be feeling good all the time. Apparently some residual "goodness" may hang over.
To completely change the subject, we haven't made an offer on the house yet. We are playing games, which I personally don't understand, with the agent. Jason doesn't want him to know how keen we are. I don't really see the point because as soon as we make an offer he will know we are keen won't he?? Am I missing something here?
I am still pretty excited though. The more I think about the house, the more perfect it is for us. I just can't wait to get out of this house I think. It's been such a bug bear with it's dampness and mould. I can't wait to be out of here! There are some good memories in this house but they are mostly overshadowed by it's problems. Man, we will miss our neighbours though. They are and have been great in the past 2 years. Shame we can't take them with us!!!
I think Jason is planning on putting in an offer today on the house so I will keep you posted.
Not much else to share. We are off to the zoo tomorrow can't wait, so I won't be writing for a couple of days now, probably not until Saturday unless to tell you we have the house!
Take care and love to all xxxx
NEVER, NEVER, NEVER GIVE UP
Saturday, October 31, 2009
Another good day!
Hooray, I have now officially had 2 great days in a row!
I think a combination of the Happy Drugs my beautiful nurse Jenelle got for me, and moving out of that 1st week post chemo phase....
Yesterday was a particularly exciting day because we decided to buy the camper trailer! We ended up getting a caravan type one, we were almost going to buy a tent one but ended up with the Jayco Swan Outback edition. I am so excited! It was like it was meant to be.
As I said I was feeling good yesterday so after my psychologist appointment, which went really well by the way, we thought we would go and have a look at the tent camper trailer again which was in North Parramatta. I had earlier in the week decided on the caravan type just for ease of packing stuff up and having everything you need already there for you, like the cooker, fridge, microwave etc.
After we looked at the tent trailer again I thought we could take the trek out to good old St Marys to the Jayco dealer. By this time it was about 4:00pm so I am sure the guy wasn't thrilled to have us arriving at that time on a Friday afternoon! Anyway, we had a look through it again and were more happy with the caravan option.
He took us inside to spec up what we were after and we went through all our added options. He said we wouldn't be able to get it until Feb 2010!!!! Apparently, the model we are after is their most popular so that's why such a long wait. Anyway, he then thought he might have a look at what they had in stock. There was one exactly as we had specced up ready to go, do you believe it! As I said, I think it was meant to be. Anyway, we said we would have to have a chat about it, by this time it was 5pm and he just wanted to go home too!
We talked about it on the way home and decided to just do it. We had been talking about it for months, so why wait any longer. So we rang him this morning and put down a deposit. We pick it up on Monday 9th November, (because we are going to the zoo next week), and I can't wait!!!! Jason can, because he has to learn how to drive towing something, and especially the reversing bit! I'm sure he will be fine, it can't be that hard can it.....lol!
We have also been looking at houses toward the end of the week, and we have found one we really like. Surprisingly, it's in Kellyville. We weren't even looking in that area, but an agent suggested we just come and look at this one because it had all we were looking for. He was right. It's perfect. It ticks all the boxes except it's in Kellyville not West Pennant Hills. Mind you, if it was in WPH it would be so far out of our price range it wouldn't be funny! So I will keep you posted on that one as we figure out whether or not to make an offer, and if so how much? The joys of house hunting...........
We went to an event out at Glenmore golf club this afternoon which was grat fun for the kids and us too I suppose. Jason and the big boys went on a helicopter flight so that was a great experience for them all! The boys got their faces painted and jumped on the jumping castle until they couldn't breathe. They are so funny to watch!!
Anyway, Happy Halloween, I'm off to sleep now, take care.
By the way, I don't realise how many people read this blog, and become concerned when I haven't written for a while. Sorry about that. It is generally because I feel like crap and I don't want to spend the whole time whining so I don't write at all! So please don't worry...if something bad happens, I'll get Jason to write so you know what's going on.
NEVER, NEVER, NEVER GIVE UP!
I think a combination of the Happy Drugs my beautiful nurse Jenelle got for me, and moving out of that 1st week post chemo phase....
Yesterday was a particularly exciting day because we decided to buy the camper trailer! We ended up getting a caravan type one, we were almost going to buy a tent one but ended up with the Jayco Swan Outback edition. I am so excited! It was like it was meant to be.
As I said I was feeling good yesterday so after my psychologist appointment, which went really well by the way, we thought we would go and have a look at the tent camper trailer again which was in North Parramatta. I had earlier in the week decided on the caravan type just for ease of packing stuff up and having everything you need already there for you, like the cooker, fridge, microwave etc.
After we looked at the tent trailer again I thought we could take the trek out to good old St Marys to the Jayco dealer. By this time it was about 4:00pm so I am sure the guy wasn't thrilled to have us arriving at that time on a Friday afternoon! Anyway, we had a look through it again and were more happy with the caravan option.
He took us inside to spec up what we were after and we went through all our added options. He said we wouldn't be able to get it until Feb 2010!!!! Apparently, the model we are after is their most popular so that's why such a long wait. Anyway, he then thought he might have a look at what they had in stock. There was one exactly as we had specced up ready to go, do you believe it! As I said, I think it was meant to be. Anyway, we said we would have to have a chat about it, by this time it was 5pm and he just wanted to go home too!
We talked about it on the way home and decided to just do it. We had been talking about it for months, so why wait any longer. So we rang him this morning and put down a deposit. We pick it up on Monday 9th November, (because we are going to the zoo next week), and I can't wait!!!! Jason can, because he has to learn how to drive towing something, and especially the reversing bit! I'm sure he will be fine, it can't be that hard can it.....lol!
We have also been looking at houses toward the end of the week, and we have found one we really like. Surprisingly, it's in Kellyville. We weren't even looking in that area, but an agent suggested we just come and look at this one because it had all we were looking for. He was right. It's perfect. It ticks all the boxes except it's in Kellyville not West Pennant Hills. Mind you, if it was in WPH it would be so far out of our price range it wouldn't be funny! So I will keep you posted on that one as we figure out whether or not to make an offer, and if so how much? The joys of house hunting...........
We went to an event out at Glenmore golf club this afternoon which was grat fun for the kids and us too I suppose. Jason and the big boys went on a helicopter flight so that was a great experience for them all! The boys got their faces painted and jumped on the jumping castle until they couldn't breathe. They are so funny to watch!!
Anyway, Happy Halloween, I'm off to sleep now, take care.
By the way, I don't realise how many people read this blog, and become concerned when I haven't written for a while. Sorry about that. It is generally because I feel like crap and I don't want to spend the whole time whining so I don't write at all! So please don't worry...if something bad happens, I'll get Jason to write so you know what's going on.
NEVER, NEVER, NEVER GIVE UP!
Thursday, October 29, 2009
A bit slack....
I've been a bit slack over the past week. Haven't written since the trivia night.
Mostly because nothing much has been happening but also anything that has, hasn't been great so I haven't bothered writing it down, although I suppose that's supposed to be the therapeutic part for me!
I have really been down the past week. The chemo has knocked me a round a bit this time, I do remember them telling me that it is a cumulative effect and that you will feel worse each time. That's something to look forward to isn't it.....not!
I have been really lethargic and just feeling off. Of course I haven't had an appetite either. Along with my nurse, my brother Jeff lectures me constantly on the value of food. It's not like I don't know this, it's just I don't feel like it, or if I do and I eat it, I bring it back up. Consequently, I have lost more weight. I am down to 56kg now, my normal weight is 62kg.
As a result of all of those factors, my nurse Jenelle, spoke to one of my doctors to get me onto a happy drug. Which along with perking me up a bit should stimulate my appetite. I found that I ate a fair amount for dinner last night.....far more than I have been, but it was a roast!!
I have another couple of weeks before my appointment with Kefford and crew re chemo and scans, so next week is appointment free. We are taking advantage and going with friends to Dubbo zoo for a couple of days. Staying the first night in the zoo and the second just in a motel in town. It should be great and hopefully my health and spirits will have picked up so we can really make the most of it.
I think I may be spending too much time focussing on the chemo rather than all the other things. I think if I just let it go and focus on good stuff, like getting a camper trailer it will be better for me.
I go and see the psychologist this afternoon. Originally, it was just to learn some techniques with my breathing for when I get tight and sore in the chest and feel like I am not getting enough air in but I might and up having just a general chat with her as well.
Anyway, that's about it for now xxx
NEVER, NEVER, NEVER GIVE UP
Mostly because nothing much has been happening but also anything that has, hasn't been great so I haven't bothered writing it down, although I suppose that's supposed to be the therapeutic part for me!
I have really been down the past week. The chemo has knocked me a round a bit this time, I do remember them telling me that it is a cumulative effect and that you will feel worse each time. That's something to look forward to isn't it.....not!
I have been really lethargic and just feeling off. Of course I haven't had an appetite either. Along with my nurse, my brother Jeff lectures me constantly on the value of food. It's not like I don't know this, it's just I don't feel like it, or if I do and I eat it, I bring it back up. Consequently, I have lost more weight. I am down to 56kg now, my normal weight is 62kg.
As a result of all of those factors, my nurse Jenelle, spoke to one of my doctors to get me onto a happy drug. Which along with perking me up a bit should stimulate my appetite. I found that I ate a fair amount for dinner last night.....far more than I have been, but it was a roast!!
I have another couple of weeks before my appointment with Kefford and crew re chemo and scans, so next week is appointment free. We are taking advantage and going with friends to Dubbo zoo for a couple of days. Staying the first night in the zoo and the second just in a motel in town. It should be great and hopefully my health and spirits will have picked up so we can really make the most of it.
I think I may be spending too much time focussing on the chemo rather than all the other things. I think if I just let it go and focus on good stuff, like getting a camper trailer it will be better for me.
I go and see the psychologist this afternoon. Originally, it was just to learn some techniques with my breathing for when I get tight and sore in the chest and feel like I am not getting enough air in but I might and up having just a general chat with her as well.
Anyway, that's about it for now xxx
NEVER, NEVER, NEVER GIVE UP
Saturday, October 24, 2009
Trivia Night
What another great night!
Thank you so much again to Glenmore Golf Club, Beggy, Swatty and their families and everyone who donated prizes and came along last night.
We had a great time, unfortunately I couldn't quite last the distance I had to call it quits after the trivia. I'm really sorry if I didn't get to say good-bye personally to you, but it gets a bit hectic with the goodbyes to everyone so it's a lot a quicker and easier to just sneak away, sorry about that!
The other unfortunate thing is you don't really get a chance to get around and have a chat with everyone. So sorry to all those people I didn't get a chance to even speak to!
I have no idea what time the night ended or how it all ended up, but I am sure everyone else had as much fun as we did. Trivia nights are a great night out! Congratulations to my old Colo mates who won the night. What legends! Go Leanne and crew!
Well I feel like I have been hit for 6 so it may take a day at least to get me back to normal. With my usual regime of much sleep!!!
Well, bye for now. And thanks again for making the night so wonderful.xxxx
NEVER, NEVER, NEVER GIVE UP!
Thank you so much again to Glenmore Golf Club, Beggy, Swatty and their families and everyone who donated prizes and came along last night.
We had a great time, unfortunately I couldn't quite last the distance I had to call it quits after the trivia. I'm really sorry if I didn't get to say good-bye personally to you, but it gets a bit hectic with the goodbyes to everyone so it's a lot a quicker and easier to just sneak away, sorry about that!
The other unfortunate thing is you don't really get a chance to get around and have a chat with everyone. So sorry to all those people I didn't get a chance to even speak to!
I have no idea what time the night ended or how it all ended up, but I am sure everyone else had as much fun as we did. Trivia nights are a great night out! Congratulations to my old Colo mates who won the night. What legends! Go Leanne and crew!
Well I feel like I have been hit for 6 so it may take a day at least to get me back to normal. With my usual regime of much sleep!!!
Well, bye for now. And thanks again for making the night so wonderful.xxxx
NEVER, NEVER, NEVER GIVE UP!
Friday, October 23, 2009
Chemo
Yes it actully is the wee hours of the morning this time. It's about 4:30am and I can't sleep because I keep coughing. Don't know what has brought this on except maybe chemo??
Speaking of which, I had chemo today. It was yucky again....they found a vein easily enough but unfortunately it was hurting really badly as it went in so they had to slow down the flow of the infusion which means it's less pain but it takes longer to run through. There is nothing really good about the whole experience. With any luck this will be last experience with the DTIC because I'll get onto the b-raf trial next month....fingers crossed.
I am usually saddenned when I leave there because I can't get over how many people are suffering and fighting this horrible disease....cancer generally I mean. It's such a bastard of a disease and there is no rhyme or reason as to who or when it strikes and that is something clearly evident in the chemo suite when you look aound at the 50 or so other people and they range in age, culture and creed as much as those walking along the street outside. It favours no-one more than another.
I felt pretty crappy afterwards today so went straight to bed when I got home. Not good for the kids because they get panicked when Mum is in bed and start playing up more. And of course Matt starts talking about dying again. His little brain is never far away from thinking the worst poor little poppet.
I was trying to get some rest because the Glenmore trivia night is on tonight and I would like to at least try to make an appearance. So much for that when I am wide awake at 4 am!! I am sure I will go back to sleep soon, I haven't coughed while I have been typing this so that's a good sign!
Well, I will lie down and try this sleep thing again xxxx
NEVER, NEVER, NEVER GIVE UP!
Speaking of which, I had chemo today. It was yucky again....they found a vein easily enough but unfortunately it was hurting really badly as it went in so they had to slow down the flow of the infusion which means it's less pain but it takes longer to run through. There is nothing really good about the whole experience. With any luck this will be last experience with the DTIC because I'll get onto the b-raf trial next month....fingers crossed.
I am usually saddenned when I leave there because I can't get over how many people are suffering and fighting this horrible disease....cancer generally I mean. It's such a bastard of a disease and there is no rhyme or reason as to who or when it strikes and that is something clearly evident in the chemo suite when you look aound at the 50 or so other people and they range in age, culture and creed as much as those walking along the street outside. It favours no-one more than another.
I felt pretty crappy afterwards today so went straight to bed when I got home. Not good for the kids because they get panicked when Mum is in bed and start playing up more. And of course Matt starts talking about dying again. His little brain is never far away from thinking the worst poor little poppet.
I was trying to get some rest because the Glenmore trivia night is on tonight and I would like to at least try to make an appearance. So much for that when I am wide awake at 4 am!! I am sure I will go back to sleep soon, I haven't coughed while I have been typing this so that's a good sign!
Well, I will lie down and try this sleep thing again xxxx
NEVER, NEVER, NEVER GIVE UP!
Wednesday, October 21, 2009
Good news at last!
It's about bloody time I got some good news I think!
Got my scan results back this morning and the tumour growth is stable. That means no new ones and the existing ones have stayed the same. This is great news because it means that something is working, whether it be the chemo, the apricot kernels, the juicing or the attitude, the cancer has taken a backward step. I have won this round! That makes us one all....Judy 1 Melanoma 1
I am pleased that my ability to do the abnormal has fallen in my favour this time. With only a 15% success rate no-one was expecting a good result. Apparently, the doctors were pretty excited at my results too. Maybe a way in.....and if nothing else, it buys me more time. And with 3 young boys and a loving husband, that's what I want more than anything!
The best part of the results was in the detail it talked about the tumour in my heart. That was the one that stopped me getting on the b-raf trial. It has almost halved in size!!! It was the only one that had such a dramatic shrinkage. This means that if the next round of chemo and scans show another reduction they can put me forward for the trial again, and this time I may get on it. Yippeee! Then the melanoma will REALLY be running scared.
Happy anniversary to Jason and I. 9 Years, man it's flown....I think I love him more than I did 9 years ago. We had a wonderful lunch at Wildfire in Circular Quay. The boys were reasonably well behaved and the food was beautiful.
Off to beddy byes now, just had to share the good news with you. xxx
NEVER, NEVER, NEVER GIVE UP!
Got my scan results back this morning and the tumour growth is stable. That means no new ones and the existing ones have stayed the same. This is great news because it means that something is working, whether it be the chemo, the apricot kernels, the juicing or the attitude, the cancer has taken a backward step. I have won this round! That makes us one all....Judy 1 Melanoma 1
I am pleased that my ability to do the abnormal has fallen in my favour this time. With only a 15% success rate no-one was expecting a good result. Apparently, the doctors were pretty excited at my results too. Maybe a way in.....and if nothing else, it buys me more time. And with 3 young boys and a loving husband, that's what I want more than anything!
The best part of the results was in the detail it talked about the tumour in my heart. That was the one that stopped me getting on the b-raf trial. It has almost halved in size!!! It was the only one that had such a dramatic shrinkage. This means that if the next round of chemo and scans show another reduction they can put me forward for the trial again, and this time I may get on it. Yippeee! Then the melanoma will REALLY be running scared.
Happy anniversary to Jason and I. 9 Years, man it's flown....I think I love him more than I did 9 years ago. We had a wonderful lunch at Wildfire in Circular Quay. The boys were reasonably well behaved and the food was beautiful.
Off to beddy byes now, just had to share the good news with you. xxx
NEVER, NEVER, NEVER GIVE UP!
Monday, October 19, 2009
Photo!
Well, I did it......here is one of the photos from Sunday. Not one of the best, but great all the same, not that I am biased or anything. I actually think Hamish and Andy look similar inthis photo, and more like me than their Dad. What do you reckon? xxx
Where to now?
First of all thanks to everyone who is trying to help out or has offered help with the internet issue. I will get on to it tomorrow....or more accurately I'll get Jason on to it!! While I used to be the technical director for all household goods he is slowly learning how to make things work himself!!
I had my appointment with my medical oncology team today. It was a take stock and figure out what to do now meeting. Mainly because I wasn't prepared to go and have another round of chemo if no improvement was shown since the last scan. I class improvement even as no progression of disease because based on the last scans, it was very aggressive and moving very fast. It will be interesting to see where it's at now.
So, the plan is, I have scans tomorrow arvo, and a blood test some time in the next few days, and we will look at both results and decide whether to go forward with cycle 3 of chemo. It was supposed to be this Friday, but we have postponed until Friday next week, 30th Oct. The problem is, I can't know for sure one way or another if the chemo is making me sick or if it's disease. It would be so much easier if everything was just straight forward wouldn't it? Decision making would become a breeze because all our options and their consequences would be incredibly clear. Too easy....
We used some of our put away holiday money today to buy a video camera. We figured we aren't going away in a big hurry, so we spent it on something useful as far as creating something for the boys goes. I plan on doing a bit of a spiel for them as trying to get some everyday footage of me interacting with them, particularly with Hamish as h will have no recollection of these early months. At least then he wll have something to look at when he is older to remind him of his Mum.
The family portraits yesterday were great. It was great fun and from the ones I have seen so far, they look pretty good too. They photographer Carly, was awesome. So patient with the boys and you could tell she was really passionate about what she does. I would highly recommend her to anyone. I will see if I can figure out how to attach one of the phtotos to here so you can see how great they are.
I was exhausted by the end. After having my hair and makeup done, which took about an hour, we then took photos for about 2.5 hours. It's a lot of excitement for me who is used to just short outings, so I couldn't wait to get home unfortunately. But they undestood and man I had a good sleep when I got home!
I was having a pretty bad day on Sunday, healthwise. I was a bit chucky for the first time so that was no good. I have been feeling a bit off for most of the week really. Don't know why because chemo should be ut of my system by now well and truly.....anyway, who knows??
Well, I'll try to figure out how to upload photosand let you know as I know more about results etc. xxxx
NEVER, NEVER, NEVER GIVE UP!
I had my appointment with my medical oncology team today. It was a take stock and figure out what to do now meeting. Mainly because I wasn't prepared to go and have another round of chemo if no improvement was shown since the last scan. I class improvement even as no progression of disease because based on the last scans, it was very aggressive and moving very fast. It will be interesting to see where it's at now.
So, the plan is, I have scans tomorrow arvo, and a blood test some time in the next few days, and we will look at both results and decide whether to go forward with cycle 3 of chemo. It was supposed to be this Friday, but we have postponed until Friday next week, 30th Oct. The problem is, I can't know for sure one way or another if the chemo is making me sick or if it's disease. It would be so much easier if everything was just straight forward wouldn't it? Decision making would become a breeze because all our options and their consequences would be incredibly clear. Too easy....
We used some of our put away holiday money today to buy a video camera. We figured we aren't going away in a big hurry, so we spent it on something useful as far as creating something for the boys goes. I plan on doing a bit of a spiel for them as trying to get some everyday footage of me interacting with them, particularly with Hamish as h will have no recollection of these early months. At least then he wll have something to look at when he is older to remind him of his Mum.
The family portraits yesterday were great. It was great fun and from the ones I have seen so far, they look pretty good too. They photographer Carly, was awesome. So patient with the boys and you could tell she was really passionate about what she does. I would highly recommend her to anyone. I will see if I can figure out how to attach one of the phtotos to here so you can see how great they are.
I was exhausted by the end. After having my hair and makeup done, which took about an hour, we then took photos for about 2.5 hours. It's a lot of excitement for me who is used to just short outings, so I couldn't wait to get home unfortunately. But they undestood and man I had a good sleep when I got home!
I was having a pretty bad day on Sunday, healthwise. I was a bit chucky for the first time so that was no good. I have been feeling a bit off for most of the week really. Don't know why because chemo should be ut of my system by now well and truly.....anyway, who knows??
Well, I'll try to figure out how to upload photosand let you know as I know more about results etc. xxxx
NEVER, NEVER, NEVER GIVE UP!
Saturday, October 17, 2009
Stupid computers!!
It's finally happened. We are suffering from computer issues.
We got a guy in last week to fix up both the laptop and the desktop and while he was here he connected up our new optus broadband. Now the computers work really well, but the internet is stuffed! It's like it doesn't work when the phones are plugged in but if we unplug them it's fine. What's doing with that! Anyway, we will have to call Optus tomorrow and see if we can figure out how to fix it. So that's why I haven't written for a while. No internet connection!
We are having family portraits done tomorrow so looking forward to that. We bought plain white tees for the boys so we can all be matching and then light blue ones for them to have shots done of just them. They should be good, a friend of Jason's from high school has offered to do them for us so we are quite excited. Also, they are doing my hair and make-up beforehand so I shouldn't look like a complete drip!!
Speaking of hair and makeup, I went to the MPA support group on Thursday night and the RPA film crew were there for Jay like we had been warned. They did a one on one interview with me so I got my 15 secs of fame, but of course I was looking very Judy. Trackies, t-shirt, jacket no make-up and hair pulled back in a pony tail. Just how you want to look on national TV!! Not that it really matters, they probably won't show it anyway and if they do I expect it will be incredibly short and only shoulders up so my trackies won't get a start!
We took Matt to the bereavement counsellor on Thursday too. That went really well. We were there for 2 hours but it flew. Matt didn't want to leave and can't wait to go back. We were thinking, when are they going to start counselling him, we've been here for nearly 2 hours and all they have done is played. Of course, we then found out that the play was the therapy and the counsellor found out all he needed to know in that time. The encouraging news was that Matt is behaving very normally for a 5 year old dealing with the loss of a parent. Apparently, we are doing something right because he doing all the right things as far as the stages he moves through. He talked about how Matt is already starting to exclude me from situations getting ready for my abscence and while that seems terrible and is sad for me, it is something he needs to do to be able to cope when I do go. He is still affectionate and loves me he is just cutting me out of future events in his mind. Which is pretty clever really. He also explained how they build memories of the parents with the kids. They will ask a question like, "How did your Mum feel when she had you?" The child will say, I don't know so the counsellor will then ask the Dad the question in front of the child. Apparently, children retain more when they are eavesdropping, so the memory of how Mum felt at their birth is born! Pretty amazing hey.
I think that's about it for now, oh don't forget to RSVP to Paul for the Glenmore trivia night next weekend if you are going. I think the RSVP is by today so technically you may have already missed out!!
Till next time xxxx
NEVER, NEVER, NEVER GIVE UP!
We got a guy in last week to fix up both the laptop and the desktop and while he was here he connected up our new optus broadband. Now the computers work really well, but the internet is stuffed! It's like it doesn't work when the phones are plugged in but if we unplug them it's fine. What's doing with that! Anyway, we will have to call Optus tomorrow and see if we can figure out how to fix it. So that's why I haven't written for a while. No internet connection!
We are having family portraits done tomorrow so looking forward to that. We bought plain white tees for the boys so we can all be matching and then light blue ones for them to have shots done of just them. They should be good, a friend of Jason's from high school has offered to do them for us so we are quite excited. Also, they are doing my hair and make-up beforehand so I shouldn't look like a complete drip!!
Speaking of hair and makeup, I went to the MPA support group on Thursday night and the RPA film crew were there for Jay like we had been warned. They did a one on one interview with me so I got my 15 secs of fame, but of course I was looking very Judy. Trackies, t-shirt, jacket no make-up and hair pulled back in a pony tail. Just how you want to look on national TV!! Not that it really matters, they probably won't show it anyway and if they do I expect it will be incredibly short and only shoulders up so my trackies won't get a start!
We took Matt to the bereavement counsellor on Thursday too. That went really well. We were there for 2 hours but it flew. Matt didn't want to leave and can't wait to go back. We were thinking, when are they going to start counselling him, we've been here for nearly 2 hours and all they have done is played. Of course, we then found out that the play was the therapy and the counsellor found out all he needed to know in that time. The encouraging news was that Matt is behaving very normally for a 5 year old dealing with the loss of a parent. Apparently, we are doing something right because he doing all the right things as far as the stages he moves through. He talked about how Matt is already starting to exclude me from situations getting ready for my abscence and while that seems terrible and is sad for me, it is something he needs to do to be able to cope when I do go. He is still affectionate and loves me he is just cutting me out of future events in his mind. Which is pretty clever really. He also explained how they build memories of the parents with the kids. They will ask a question like, "How did your Mum feel when she had you?" The child will say, I don't know so the counsellor will then ask the Dad the question in front of the child. Apparently, children retain more when they are eavesdropping, so the memory of how Mum felt at their birth is born! Pretty amazing hey.
I think that's about it for now, oh don't forget to RSVP to Paul for the Glenmore trivia night next weekend if you are going. I think the RSVP is by today so technically you may have already missed out!!
Till next time xxxx
NEVER, NEVER, NEVER GIVE UP!
Wednesday, October 14, 2009
It's been a while....
Sorry I haven't written for ages...a combination of feeling pretty crappy and being tired!
I don't really have that much to report except for a massive scare on Sunday morning. I had had a pretty terrible night. Starting from about 2am I was really restless and started feeling pretty ordinary. As the morning went on, I was feeling worse and worse until by 6am, I was feeling REALLY bad. I can't really describe it.......everything hurt, I felt terribly ill, I couldn't breathe properly, my chest was tight and I was coughing heaps. Needless to say I was in tears, and I had said to Jason, "I think this might be it. I might be going." We decided not to call an ambulance because my wish is to die at home and unless it became unbearable I wanted to stay there. He asked what drugs I wanted and I couldn't answer because there was so much wrong I didn't know where to start! He went to get some breakthrough pain relief and when he got back he said, "Have you checked your pump?" When I looked at it it had stopped! It hadn't been going since about 8pm! No wonder I felt crap!!!!
I had now been completely drug free for about 8 hours. The good thing was I had an explanation for why I was feeling so bad, but it was a bit of a shock how bad I would be feeling if I didn't have the drugs. Another one of those slaps in the face to remind me how sick I really am.
It took a few hours to get the levels back up and for me to be comfortable again, but I check my pump constantly now.
Nothing terribly interesting has happened since then. As I said, I've been feeling pretty crappy. I have had nausea and been really fatigued. So all I want to do is sleep. I am confident that's a side effect of the chemo.
I saw the Palliative care Dr again today. He hasn't changed any medication but was able to ascertain that one of my new pains is probably coming from a tumour in my lung irritating the pleura. Why don't they just go away. The tumours that is!
It's our 9th wedding anniversary next Wednesday night so I booked at the Quay Grand Suites again. With the kids again, because they really make it worthwhile. I thought maybe we could have lunch at Wildfire and then check-in. We'll see.....
We are going to Macquarie Park Crematorium tomorrow to pick our spots. I know it seems a bit morbid, but it's less for Jason to do when the time comes, and if I do beat this, I am still going to die one day!
Oh, RPA re doing a "Where are they now?" show and Jay is having them film an MPA meeting tomorrow night. Great coverage for MPA, and I love anything that gets the melanoma message out there. Hopefully I can make it, as long as this nausea keeps away. I'll be the chick up the back dozing!!!
Anyway, until next time xxxx
NEVER, NEVER, NEVER GIVE UP!
I don't really have that much to report except for a massive scare on Sunday morning. I had had a pretty terrible night. Starting from about 2am I was really restless and started feeling pretty ordinary. As the morning went on, I was feeling worse and worse until by 6am, I was feeling REALLY bad. I can't really describe it.......everything hurt, I felt terribly ill, I couldn't breathe properly, my chest was tight and I was coughing heaps. Needless to say I was in tears, and I had said to Jason, "I think this might be it. I might be going." We decided not to call an ambulance because my wish is to die at home and unless it became unbearable I wanted to stay there. He asked what drugs I wanted and I couldn't answer because there was so much wrong I didn't know where to start! He went to get some breakthrough pain relief and when he got back he said, "Have you checked your pump?" When I looked at it it had stopped! It hadn't been going since about 8pm! No wonder I felt crap!!!!
I had now been completely drug free for about 8 hours. The good thing was I had an explanation for why I was feeling so bad, but it was a bit of a shock how bad I would be feeling if I didn't have the drugs. Another one of those slaps in the face to remind me how sick I really am.
It took a few hours to get the levels back up and for me to be comfortable again, but I check my pump constantly now.
Nothing terribly interesting has happened since then. As I said, I've been feeling pretty crappy. I have had nausea and been really fatigued. So all I want to do is sleep. I am confident that's a side effect of the chemo.
I saw the Palliative care Dr again today. He hasn't changed any medication but was able to ascertain that one of my new pains is probably coming from a tumour in my lung irritating the pleura. Why don't they just go away. The tumours that is!
It's our 9th wedding anniversary next Wednesday night so I booked at the Quay Grand Suites again. With the kids again, because they really make it worthwhile. I thought maybe we could have lunch at Wildfire and then check-in. We'll see.....
We are going to Macquarie Park Crematorium tomorrow to pick our spots. I know it seems a bit morbid, but it's less for Jason to do when the time comes, and if I do beat this, I am still going to die one day!
Oh, RPA re doing a "Where are they now?" show and Jay is having them film an MPA meeting tomorrow night. Great coverage for MPA, and I love anything that gets the melanoma message out there. Hopefully I can make it, as long as this nausea keeps away. I'll be the chick up the back dozing!!!
Anyway, until next time xxxx
NEVER, NEVER, NEVER GIVE UP!
Saturday, October 10, 2009
What a night!
Wow, what a fantastic night last night turned out to be.
I think everyone underestimated the crowd both in size and generosity. 240 people turned up, and people had to be turned away. They raised $30,000 for us. How amazing is that! It will certainly help to pay the bills over the coming months.
The night was a success in every sense of the word. It was great fun, and I think everyone else enjoyed themselves. I can't believe I actually managed to stay until the end. Given I was questioning whether to go or not in the first place, and then at halfway was seriously contemplating going home. I had said to Jason, "I think I'm done, just give me five more minutes and then we'll go".
Somewhere in that 5 minutes I got my second wind and managed to kick on through until the end.
It was great to catch up with family and friends that I hadn't seen in such a long time. To see family like Nikki and Andrew who made the huge trek down from the border just to come along and school friends that I hadn't seen in at least 15 years. It was wonderful.
I want to thank everybody again who came along last night and those that didn't but donated prizes and/or money. We have been completely overwhelmed by the love and support we have received. While the money side of things is something we try not to dwell on, the efforts of everyone involved last night will certainly make facing the bills a little easier.
While I know that there were a lot of people involved in bringing last night together, I want to make particular mention of my incredible sister-in-law Sharon, whose tireless efforts really showed in how much of a success last night really was. You are a champion. Scott and Jeff too of course, but Sharon is the chief organiser.
On a health point, I went to pick up my new heart drugs from the hospital today. They just had to check my blood pressure before they gave them to me because they may lower it substantially. I don't know, I have drugs to make things go up, go down, come out, stay in......it's neverending lol!
While at the hospital, I ran into one of the cardiologists that treated me when I was in last time. I couldn't believe she remembered me, but she said that every now and then you get a case that you rememeber and it sticks with you. Mine was one of those. Made me feel a little special I must say. She probably didn't mean much by it but it made my day!
Well, I have spent most of the day recovering today, I am still exhausted!!!! I am off to bed now and it's only 8pm.
Take care and until next time
NEVER, NEVER, NEVER GIVE UP
I think everyone underestimated the crowd both in size and generosity. 240 people turned up, and people had to be turned away. They raised $30,000 for us. How amazing is that! It will certainly help to pay the bills over the coming months.
The night was a success in every sense of the word. It was great fun, and I think everyone else enjoyed themselves. I can't believe I actually managed to stay until the end. Given I was questioning whether to go or not in the first place, and then at halfway was seriously contemplating going home. I had said to Jason, "I think I'm done, just give me five more minutes and then we'll go".
Somewhere in that 5 minutes I got my second wind and managed to kick on through until the end.
It was great to catch up with family and friends that I hadn't seen in such a long time. To see family like Nikki and Andrew who made the huge trek down from the border just to come along and school friends that I hadn't seen in at least 15 years. It was wonderful.
I want to thank everybody again who came along last night and those that didn't but donated prizes and/or money. We have been completely overwhelmed by the love and support we have received. While the money side of things is something we try not to dwell on, the efforts of everyone involved last night will certainly make facing the bills a little easier.
While I know that there were a lot of people involved in bringing last night together, I want to make particular mention of my incredible sister-in-law Sharon, whose tireless efforts really showed in how much of a success last night really was. You are a champion. Scott and Jeff too of course, but Sharon is the chief organiser.
On a health point, I went to pick up my new heart drugs from the hospital today. They just had to check my blood pressure before they gave them to me because they may lower it substantially. I don't know, I have drugs to make things go up, go down, come out, stay in......it's neverending lol!
While at the hospital, I ran into one of the cardiologists that treated me when I was in last time. I couldn't believe she remembered me, but she said that every now and then you get a case that you rememeber and it sticks with you. Mine was one of those. Made me feel a little special I must say. She probably didn't mean much by it but it made my day!
Well, I have spent most of the day recovering today, I am still exhausted!!!! I am off to bed now and it's only 8pm.
Take care and until next time
NEVER, NEVER, NEVER GIVE UP
Wednesday, October 7, 2009
Crowdy Head
Well we arrived last night at about 6pm after the most monumental carpacking ever! 3 adults, 2 kids and a baby plus all the paraphenalia that goes along with them managed to fit in the Territory with a box on the roof. Pretty impressive, hey! Yet another reason I married Jason, he's good at packing!!!!
The place is everything I remembered and more, and the weather today was stunning so spent the afternoon at the beach. It seems though I have somehow lost my ability to stay upright. I fell over twice in a matter of 5 minutes. Very funny to watch I am sure, after getting over the initial concern of whether I had collapsed or tripped. The very loud laughing coming from the crumpled heap on the sand gave it away!
I was almost a bigger star than the local rag tonight. I think I told you the local paper did a story on me. Well it came out yesterday with the headline "Mum warns of solarium use" or something similar. It seems ACA were doing a story tonight on Solariums and how one guy (who I know through our support group) is going to sue for his melanoma. They wanted to get my story as well. Because I am not feeling that flash, nausea caught up with me again from Friday's chemo, and we are away at the moment I declined but I said I would be happy to do a follow up or they could do something on my current battle with the insurance company....snakes, down the track.
Anyway, the story didn't air tonight so I don't know what happened.
Got some more bad news today. Another one of my heart function tests came back and not only do I have atrial fibrualation (sp.) but also some other form of funny rhythm so they want to put me on a drug that may help it. It would be really nice to get some good news for a change wouldn't it!
I think that's it for now, hopefully we don't get blown away, it's really windy here tonight.
NEVER, NEVER, NEVER GIVE UP! xxx
The place is everything I remembered and more, and the weather today was stunning so spent the afternoon at the beach. It seems though I have somehow lost my ability to stay upright. I fell over twice in a matter of 5 minutes. Very funny to watch I am sure, after getting over the initial concern of whether I had collapsed or tripped. The very loud laughing coming from the crumpled heap on the sand gave it away!
I was almost a bigger star than the local rag tonight. I think I told you the local paper did a story on me. Well it came out yesterday with the headline "Mum warns of solarium use" or something similar. It seems ACA were doing a story tonight on Solariums and how one guy (who I know through our support group) is going to sue for his melanoma. They wanted to get my story as well. Because I am not feeling that flash, nausea caught up with me again from Friday's chemo, and we are away at the moment I declined but I said I would be happy to do a follow up or they could do something on my current battle with the insurance company....snakes, down the track.
Anyway, the story didn't air tonight so I don't know what happened.
Got some more bad news today. Another one of my heart function tests came back and not only do I have atrial fibrualation (sp.) but also some other form of funny rhythm so they want to put me on a drug that may help it. It would be really nice to get some good news for a change wouldn't it!
I think that's it for now, hopefully we don't get blown away, it's really windy here tonight.
NEVER, NEVER, NEVER GIVE UP! xxx
Monday, October 5, 2009
Holiday!
Well, I don't want to get too excited until we actually get there but we are going away tomorrow for a few days!
Not quite the original Mooloolaba resort holiday we had to cancel but looking forward to a great time away with the boys none the less. We are staying at the house of a friend of Sharon's (my sister in law) at Crowdy Head, which is just between Taree and Port Macquarie.
The house itself is lovely but it has 180 degree water views of both the beach and harbour, absolutely glorious.
They can organise for community nursing up there to come and care for me and change my pump every day so it will be just like being at home as far as that goes. Isn't it great how they can organise things to help you out? And at such short notice too. I only asked today and we want to go tomorrow at lunch time. They will teach Jason how to do everything just in case something goes wrong and nobody turns up. He is becoming a very good nurse...hehehe!
There are no tests or appointments this week so we thought we would take the doctors advice and "do the things we want to do as a family". I am really looking forward to it.
Matt is right into his new book "Kemo shark". Scott and Sharon came over this afternoon and he showed them how you draw the cancer and then blast it and throw it in the bin. I guess it's his way of feeling like he is doing something to help. He keeps making me 'medicine' to take to make me better. Maybe he will grow up and find the cure for Melanoma. Wouldn't that be fantastic!
Well, we need to start writing lists of things to take on holidays, need to be triply organised with a baby and all my medications. I may not get a chance to write while we are away so I will see you on Friday night assuming my health holds up! xxx
NEVER, NEVER, NEVER GIVE UP!
Not quite the original Mooloolaba resort holiday we had to cancel but looking forward to a great time away with the boys none the less. We are staying at the house of a friend of Sharon's (my sister in law) at Crowdy Head, which is just between Taree and Port Macquarie.
The house itself is lovely but it has 180 degree water views of both the beach and harbour, absolutely glorious.
They can organise for community nursing up there to come and care for me and change my pump every day so it will be just like being at home as far as that goes. Isn't it great how they can organise things to help you out? And at such short notice too. I only asked today and we want to go tomorrow at lunch time. They will teach Jason how to do everything just in case something goes wrong and nobody turns up. He is becoming a very good nurse...hehehe!
There are no tests or appointments this week so we thought we would take the doctors advice and "do the things we want to do as a family". I am really looking forward to it.
Matt is right into his new book "Kemo shark". Scott and Sharon came over this afternoon and he showed them how you draw the cancer and then blast it and throw it in the bin. I guess it's his way of feeling like he is doing something to help. He keeps making me 'medicine' to take to make me better. Maybe he will grow up and find the cure for Melanoma. Wouldn't that be fantastic!
Well, we need to start writing lists of things to take on holidays, need to be triply organised with a baby and all my medications. I may not get a chance to write while we are away so I will see you on Friday night assuming my health holds up! xxx
NEVER, NEVER, NEVER GIVE UP!
Saturday, October 3, 2009
Just a quickie.....
I am writing tonight from a King size bed overlooking the most beautiful harbour in the world! Geez, some have it tough don't they!
We are staying at the Quay Grand Apartments on Macquarie St in Circular Quay. Not for any particular reason other than to make our own "high".
The boys were so excited...they spent the first 2 hours staring out the windows at the ferries and the trains and of course the bridge. It has been worth it just for that.
We had dinner with Jason's parents tonight too. They came up to the room and we ordered in. It was a lovely evening, very enjoyable. I picked the right night to get some form of appetite back, a very yummy t-bone steak possibly aided that!
Nothing else really to report. My health is much the same, cough driving me crazy but the pain is worsening so I'm not real happy about that one.
Until next time xxxx
NEVER, NEVER, NEVER GIVE UP
We are staying at the Quay Grand Apartments on Macquarie St in Circular Quay. Not for any particular reason other than to make our own "high".
The boys were so excited...they spent the first 2 hours staring out the windows at the ferries and the trains and of course the bridge. It has been worth it just for that.
We had dinner with Jason's parents tonight too. They came up to the room and we ordered in. It was a lovely evening, very enjoyable. I picked the right night to get some form of appetite back, a very yummy t-bone steak possibly aided that!
Nothing else really to report. My health is much the same, cough driving me crazy but the pain is worsening so I'm not real happy about that one.
Until next time xxxx
NEVER, NEVER, NEVER GIVE UP
Friday, October 2, 2009
Mmmmm.....
Don't quite know how to start this one. I have a lot to say, but don't know where to begin....
Perhaps the facts first...
I have missed out on the b-raf trial. The disease in my heart makes putting me on the trial too risky. BUGGER!
So now, medically, my options are slim. Best case scenario is have another 2 rounds of DTIC/Dicarbizane/Chemo whatever the hell you want to call it, and the tumours in my heart shrink after both rounds. Then they can put me forward again for the trial. Given that the disease progressed so much after the first round nobody is holding out too much hope for this one.
Possible, (and quite likely), scenario is that the chemo will do nothing which leaves me with weeks to live, and that could be days to weeks based on the volatility of my heart. Apparently it is quite rare to get cancer in your heart. Of course it happens, but not often. Thank God I have a very experienced oncologist because he is the only one who has seen it before. All the other doctors and nurses have not been exposed to it before. I am SPECIAL!!!
The scenario I am aiming for right now is that the 2nd round of chemo shows slowing in the progression of the disease. This will convert the weeks into months, and we can reassess after each treatment weighing up quality of life, time and side effects.
If I can at least slow the progression it gives me more time to get stronger and fight this beast. I figure that's my best option at the moment.
Until I know for sure that I can't get onto the trial, I won't explore alternative treatments further than I am already with juicing, meditation and apricot kernals because I don't want to jeapordise my chances of getting on the trial because clearly that is my best chance of survival.
Obviously, I made the decision to try a 2nd cycle of chemo....what do I have to lose?? I had that this afternoon so now I am back on the emotional and side effect roller coaster again. History has shown the more rounds you have apparently the worse the side effects hit you so brace yourselves for some whinging. I am the biggest sook you will ever come across in your life.
They had to stop and start my chemo infusion 5 times this arvo because it was stinging so badly. In the end they had to move the cannular completely to a new vein that was bigger and could take the drugs!! Such a woos I am. I daren't say it today in the nurses presence based on her reaction last time.
Anyway, there are the facts, with just a bit of my opinion mixed in.
I am sorry, if like me, you were looking for some good news....sadly it hasn't been forthcoming. Jason and I are just beside ourselves. It seems silly, but we have been trying so hard not to hear the prognosis, all the bad scans and opinions have really knocked us for six. I actually expected things to be better! HA!
As you would expect, I am not in the greatest of spirits today, at the bottom of the dip in the roller coaster you could say. And when my angel of a little boy says to me with tears in his eyes, "Mummy I don't want you to die, I want to be able to hug and kiss you properly like now", I wonder to myself where the rhyme and reason in this whole completely screwed up situation is. WHY????? How can you hurt him so much? Poor little Matty, he is doing it really tough.
Jason, Matt, Andy and I each drew the cancer tonight and blasted it and tore up the bits of paper to toss them in the bin. It is an activity that was suggested to help them deal with what is going on. Matt drew my heart with the cancer in it......pretty switched on for a 5 year old hey!
It seemed to work. We were all booming and tearing and laughing in the end.
I just want to send a little thought to the Mum's reading this....do treasure every moment you have with your kids. Man, we know how quickly they grow up, but when you think one day you are going along living your life (the camper trailer) and the next day it all gets taken away. It's scary. It's certainly hard to treasure every moment of them all the time, but even the crappy times are good, at least you are together and communicating (just maybe not too well!) Off my soapbox now.
Well, bed time...the morphine is really kicking in especially as I didn't get my nanna nap this arvo!
Sorry for the bad news and take care xxxx
NEVER, NEVER, NEVER GIVE UP
Perhaps the facts first...
I have missed out on the b-raf trial. The disease in my heart makes putting me on the trial too risky. BUGGER!
So now, medically, my options are slim. Best case scenario is have another 2 rounds of DTIC/Dicarbizane/Chemo whatever the hell you want to call it, and the tumours in my heart shrink after both rounds. Then they can put me forward again for the trial. Given that the disease progressed so much after the first round nobody is holding out too much hope for this one.
Possible, (and quite likely), scenario is that the chemo will do nothing which leaves me with weeks to live, and that could be days to weeks based on the volatility of my heart. Apparently it is quite rare to get cancer in your heart. Of course it happens, but not often. Thank God I have a very experienced oncologist because he is the only one who has seen it before. All the other doctors and nurses have not been exposed to it before. I am SPECIAL!!!
The scenario I am aiming for right now is that the 2nd round of chemo shows slowing in the progression of the disease. This will convert the weeks into months, and we can reassess after each treatment weighing up quality of life, time and side effects.
If I can at least slow the progression it gives me more time to get stronger and fight this beast. I figure that's my best option at the moment.
Until I know for sure that I can't get onto the trial, I won't explore alternative treatments further than I am already with juicing, meditation and apricot kernals because I don't want to jeapordise my chances of getting on the trial because clearly that is my best chance of survival.
Obviously, I made the decision to try a 2nd cycle of chemo....what do I have to lose?? I had that this afternoon so now I am back on the emotional and side effect roller coaster again. History has shown the more rounds you have apparently the worse the side effects hit you so brace yourselves for some whinging. I am the biggest sook you will ever come across in your life.
They had to stop and start my chemo infusion 5 times this arvo because it was stinging so badly. In the end they had to move the cannular completely to a new vein that was bigger and could take the drugs!! Such a woos I am. I daren't say it today in the nurses presence based on her reaction last time.
Anyway, there are the facts, with just a bit of my opinion mixed in.
I am sorry, if like me, you were looking for some good news....sadly it hasn't been forthcoming. Jason and I are just beside ourselves. It seems silly, but we have been trying so hard not to hear the prognosis, all the bad scans and opinions have really knocked us for six. I actually expected things to be better! HA!
As you would expect, I am not in the greatest of spirits today, at the bottom of the dip in the roller coaster you could say. And when my angel of a little boy says to me with tears in his eyes, "Mummy I don't want you to die, I want to be able to hug and kiss you properly like now", I wonder to myself where the rhyme and reason in this whole completely screwed up situation is. WHY????? How can you hurt him so much? Poor little Matty, he is doing it really tough.
Jason, Matt, Andy and I each drew the cancer tonight and blasted it and tore up the bits of paper to toss them in the bin. It is an activity that was suggested to help them deal with what is going on. Matt drew my heart with the cancer in it......pretty switched on for a 5 year old hey!
It seemed to work. We were all booming and tearing and laughing in the end.
I just want to send a little thought to the Mum's reading this....do treasure every moment you have with your kids. Man, we know how quickly they grow up, but when you think one day you are going along living your life (the camper trailer) and the next day it all gets taken away. It's scary. It's certainly hard to treasure every moment of them all the time, but even the crappy times are good, at least you are together and communicating (just maybe not too well!) Off my soapbox now.
Well, bed time...the morphine is really kicking in especially as I didn't get my nanna nap this arvo!
Sorry for the bad news and take care xxxx
NEVER, NEVER, NEVER GIVE UP
Wednesday, September 30, 2009
A bit of a setback
Well, I suppose I was due for some bad news....
The echo I had yesterday showed some more fluid had gathered around my heart. I don't know what else, as I haven't seen the report, so I am not sure if the heart function is impeded which is the factor the drug trials group will be looking at. I am preparing however to hear that I have been unsuccessful at getting on the trial. I believe that will probably be the outcome in light of the results of the CT scan I had yesterday too.
It was all bad. Instead of going into too much detail I will recite verbatim, the conclusion from the report ; "Overall there has been progression of the disease, with an increase in size and number of the pulmonary, hepatic and myocardial metastases. Multiple new bilateral breast metastases. Metastasis in the upper right anterior abdominal wall is also larger. New pleural effussions and larger pericardial effusion." For those who get lost in terminology, in my words, more and larger tumours in lungs, liver and heart. New tumours in the breasts. The one in my gut is bigger. There is fluid around my lungs and there is more fluid around my heart than previously.
So as you can gather from that, all is not happy in the Mulcahy household this evening.
Another slap in the face you may say. A wake up call that this is real and it is going to take everything I have to win this fight.........it has one the first round, but it's only the beginning.
Oh, we found out yesterday that the house has been sold. Our lease is valid until February 2010, but the house settles on 11th Nov and the new owners want to live in it, not rent it out. So legally they can't kick us out but it would be nice to get out before it settles. Just something else to occupy us if we found ourselves with some spare time!!!
Well, I am absolutely exhausted and suffering from terrible nausea so I am off to sleep.
Sorry, to drop such a bombshell then run, but that's the internet for you.
I will let you know more as I do....probably tomorrow I will hear about the trial. xxx
NEVER, NEVER, NEVER GIVE UP! Even when they give you shitty news!
The echo I had yesterday showed some more fluid had gathered around my heart. I don't know what else, as I haven't seen the report, so I am not sure if the heart function is impeded which is the factor the drug trials group will be looking at. I am preparing however to hear that I have been unsuccessful at getting on the trial. I believe that will probably be the outcome in light of the results of the CT scan I had yesterday too.
It was all bad. Instead of going into too much detail I will recite verbatim, the conclusion from the report ; "Overall there has been progression of the disease, with an increase in size and number of the pulmonary, hepatic and myocardial metastases. Multiple new bilateral breast metastases. Metastasis in the upper right anterior abdominal wall is also larger. New pleural effussions and larger pericardial effusion." For those who get lost in terminology, in my words, more and larger tumours in lungs, liver and heart. New tumours in the breasts. The one in my gut is bigger. There is fluid around my lungs and there is more fluid around my heart than previously.
So as you can gather from that, all is not happy in the Mulcahy household this evening.
Another slap in the face you may say. A wake up call that this is real and it is going to take everything I have to win this fight.........it has one the first round, but it's only the beginning.
Oh, we found out yesterday that the house has been sold. Our lease is valid until February 2010, but the house settles on 11th Nov and the new owners want to live in it, not rent it out. So legally they can't kick us out but it would be nice to get out before it settles. Just something else to occupy us if we found ourselves with some spare time!!!
Well, I am absolutely exhausted and suffering from terrible nausea so I am off to sleep.
Sorry, to drop such a bombshell then run, but that's the internet for you.
I will let you know more as I do....probably tomorrow I will hear about the trial. xxx
NEVER, NEVER, NEVER GIVE UP! Even when they give you shitty news!
Monday, September 28, 2009
b-raf follow up
Well, I had my appointment today with Prof Kefford to get the deal on the b-raf trial.
I have a few tests this week, an echocardiogram and CT scan tomorrow, I have to wear a heart monitor for 24 hrs on Wednesday and Thursday and then a PET scan on Wednesday next week. The CT and heart tests are to test my suitability for the trial, so they are the one's I have to pass. If they are all good, I will then have to do a raft of blood and urine tests and an EEG. They will probably be made for Friday or Monday.
The PET scan is to give us a base line for the start of the trial.
They plan on getting me in on 8th October. They don't waste any time at all. I have to wait 4 weeks from chemo to get it out of my system before they can start me on the trial. 28 days is 7th October!!!
So about the trial, the first day I go into the chemo day suite at 7am and am there for 12 hours. I take my first dose on arrival and then am monitored closely. I have blood taken every half hour for the first 2 or 3 hours (I can't remember exactly) and then every hour for the next 6 or 8 hours and then twice more before I go home. Days 2-7 I just take the drug at home but return on day 8 for a similar regime to day 1. On day 8 I also have another PET scan, tumours have shrunk in the first 7 days of taking this drug! Isn't that the most amazing thing you have ever heard. I cried when she told me that......I am really going to beat this! (Just in case you had any doubts!!)
I figure at that rate, I will be CANCER FREE by Christmas, what a great present!
The only thing the doctors are worried about is my heart. The ECG tomorrow will determine whether or not I will be starting the trial on 8th October. If it is unfavourable, in that there is fluid build up again, and the heart isn't beating as strongly as it could be but there is improvement from the ECG in hospital, they will give me another round of chemo and try another ECG in the hope that it will improve enough to get me onto the trial. So I am glad they have a backup plan they just aren't going, "oh well, didn't work too bad move on to the next one."
Once I am on the trial, whether it takes a few goes to get me on it or not, they will have to monitor me very closely because of my heart issues. Another concern they have is how my heart will react if the tumours shrink too quickly. Now isn't that a lovely problem to be faced with!
There are only 15 trial spots available worldwide so you have to have a pretty good case to get onto it. We met the lady this afternoon that puts our case forward to the worldwide committe. She has a very tough job, she has a stack of people that want to get onto this trial, but has to choose only a handful to put forward. It must be heart wrenching, and possibly why you are not allowed to have any contact with them until you are actually b-raf positive confirmed and signed the consent form, so 'a chosen one'.
She said one of the criteria she looks at is age and family situation, so in my case, a 38 year old with a 5, 3 and 4 month old would get a call up before a 90 year old. Not because my life is more valuable, but I have dependants relying on me.
Anyway, we should know fairly quickly the outcome so by the end of the week I expect I will have the good news!
Oh by the way, it's 10:43pm for those who asked!!
Off to sleep now xxx
NEVER, NEVER, NEVER GIVE UP! (Especially now we have b-raf!)
I have a few tests this week, an echocardiogram and CT scan tomorrow, I have to wear a heart monitor for 24 hrs on Wednesday and Thursday and then a PET scan on Wednesday next week. The CT and heart tests are to test my suitability for the trial, so they are the one's I have to pass. If they are all good, I will then have to do a raft of blood and urine tests and an EEG. They will probably be made for Friday or Monday.
The PET scan is to give us a base line for the start of the trial.
They plan on getting me in on 8th October. They don't waste any time at all. I have to wait 4 weeks from chemo to get it out of my system before they can start me on the trial. 28 days is 7th October!!!
So about the trial, the first day I go into the chemo day suite at 7am and am there for 12 hours. I take my first dose on arrival and then am monitored closely. I have blood taken every half hour for the first 2 or 3 hours (I can't remember exactly) and then every hour for the next 6 or 8 hours and then twice more before I go home. Days 2-7 I just take the drug at home but return on day 8 for a similar regime to day 1. On day 8 I also have another PET scan, tumours have shrunk in the first 7 days of taking this drug! Isn't that the most amazing thing you have ever heard. I cried when she told me that......I am really going to beat this! (Just in case you had any doubts!!)
I figure at that rate, I will be CANCER FREE by Christmas, what a great present!
The only thing the doctors are worried about is my heart. The ECG tomorrow will determine whether or not I will be starting the trial on 8th October. If it is unfavourable, in that there is fluid build up again, and the heart isn't beating as strongly as it could be but there is improvement from the ECG in hospital, they will give me another round of chemo and try another ECG in the hope that it will improve enough to get me onto the trial. So I am glad they have a backup plan they just aren't going, "oh well, didn't work too bad move on to the next one."
Once I am on the trial, whether it takes a few goes to get me on it or not, they will have to monitor me very closely because of my heart issues. Another concern they have is how my heart will react if the tumours shrink too quickly. Now isn't that a lovely problem to be faced with!
There are only 15 trial spots available worldwide so you have to have a pretty good case to get onto it. We met the lady this afternoon that puts our case forward to the worldwide committe. She has a very tough job, she has a stack of people that want to get onto this trial, but has to choose only a handful to put forward. It must be heart wrenching, and possibly why you are not allowed to have any contact with them until you are actually b-raf positive confirmed and signed the consent form, so 'a chosen one'.
She said one of the criteria she looks at is age and family situation, so in my case, a 38 year old with a 5, 3 and 4 month old would get a call up before a 90 year old. Not because my life is more valuable, but I have dependants relying on me.
Anyway, we should know fairly quickly the outcome so by the end of the week I expect I will have the good news!
Oh by the way, it's 10:43pm for those who asked!!
Off to sleep now xxx
NEVER, NEVER, NEVER GIVE UP! (Especially now we have b-raf!)
Friday, September 25, 2009
b-raf positive!
Great news!
I am b-raf positive! They rang us this morning as soon as they received notification.
This means now that I have a chance of getting onto the new trial drug that has been showing so many positive results.
Next week I will have a whole heap of tests to make sure I am well enough to go onto the trial. I think it's mostly that your heart, liver and brain are functioning within normal limits.
My biggest risk is my heart. They hook me up to a monitor for an amount of time (of which I'll find out more next week) and then check to make sure it's strong enough to take the drug.
I will find out more on Monday so I will fill you in on the details then. At the moment I just have a handful of appointments and a 20 page document I need to sift through and sign before they can put me forward. I can't imagine that there is anything in the release document that I wouldn't be happy to sign? Oh well, let's wait and see!
I was completely spoilt yesterday for my birthday. Jason got me an eternity ring. It was a complete surprise and is absolutely beautiful....just like him! The boys got me a diamond heart pendant that apparently Matt picked out on his own. Before going to a jewellery store he already knew he wanted to get that. I think he will make some woman very happy one day. Thoughtful with great taste, what an awesome combination.
We saw the psychologist today about Matt. She had some good ideas and some resources that we could use so we will see how those go over the next few days. It seems we were pretty much doing the right thing anyway, but there are some stories specifically targetted to young children with a parent with cancer that could be helpful.
You wouldn't believe that the staff at Matt and Andy's kindy, Kindalin West Pennant Hills, put in a whole lot of groceries for a hamper for us. I think it will last us a month! Just so thoughtful again......people never cease to amaze me.
I think that's about it for today....it can't get better than the b-raf news can it!! It was well worth the wait.
Best be off to sleep now, keep my body strong to fight this. I AM going to beat this.
Until next time xxx
NEVER, NEVER, NEVER GIVE UP
I am b-raf positive! They rang us this morning as soon as they received notification.
This means now that I have a chance of getting onto the new trial drug that has been showing so many positive results.
Next week I will have a whole heap of tests to make sure I am well enough to go onto the trial. I think it's mostly that your heart, liver and brain are functioning within normal limits.
My biggest risk is my heart. They hook me up to a monitor for an amount of time (of which I'll find out more next week) and then check to make sure it's strong enough to take the drug.
I will find out more on Monday so I will fill you in on the details then. At the moment I just have a handful of appointments and a 20 page document I need to sift through and sign before they can put me forward. I can't imagine that there is anything in the release document that I wouldn't be happy to sign? Oh well, let's wait and see!
I was completely spoilt yesterday for my birthday. Jason got me an eternity ring. It was a complete surprise and is absolutely beautiful....just like him! The boys got me a diamond heart pendant that apparently Matt picked out on his own. Before going to a jewellery store he already knew he wanted to get that. I think he will make some woman very happy one day. Thoughtful with great taste, what an awesome combination.
We saw the psychologist today about Matt. She had some good ideas and some resources that we could use so we will see how those go over the next few days. It seems we were pretty much doing the right thing anyway, but there are some stories specifically targetted to young children with a parent with cancer that could be helpful.
You wouldn't believe that the staff at Matt and Andy's kindy, Kindalin West Pennant Hills, put in a whole lot of groceries for a hamper for us. I think it will last us a month! Just so thoughtful again......people never cease to amaze me.
I think that's about it for today....it can't get better than the b-raf news can it!! It was well worth the wait.
Best be off to sleep now, keep my body strong to fight this. I AM going to beat this.
Until next time xxx
NEVER, NEVER, NEVER GIVE UP
Wednesday, September 23, 2009
Not quite firing on all cylinders
I am sorry to say that I am still feeling pretty ordinary. I am not sure exactly what it is, part nausea and part pain I guess, but just generally don't feel anywhere near my best. I expect that the dust hanging around today probably added to the problem making me cough which of course leads to the pain! Unfortunately, I had to go out too, (I had planned on staying indoors and not moving from my room), so there was no avoiding it.
It was quite funny actually, my appointment today was with the palliative care doctor. I had no idea I had an appointment and when the community nurse, Jenelle, got here she had to ring him to get different anti-nausea medication for me. When she spoke to him he said, "Oh, she is next on my list", and Jenelle said "Well she's sitting right here in front of me so I am guessing she won't be next up!". Woops!!
She quickly set up my pump and thankfully Jason was home today so he raced me straight up there. They waited for me to get there which I thought was nice but they didn't change any of my drugs, just added this anti-nausea one.
For some reason it can't go in the same line as the pump so they had to put in another sub-cut butterfly needle. Now I have one in either side of my tummy which means I am going to have to sleep on my back. Oh no.....how will I ever survive!
You may have noticed I am feeling a bit down about the whole thing today. I think I have had enough. Time to wake up from the nightmare and get on with life I think.........
I weighed myself on their scales at the clinic today too, I can't remember if I had already written on here just before they admitted me to hospital I was 75kg of which 13kg was fluid as my usual weight is 62kg. I weighed today at 65kg so all that excess fluid has just about gone which is great! I am guessing it also keeps fluid down around my organs so fingers crossed that the heart won't start getting fluid build up around it again.
Do you believe they still don't have the B-raf result. We ended up ringing yesterday because we couldn't wait until my appointment on Monday, but they still don't have it. That's been 4 weeks! I think Jason may actually go down and speak to the pathologists in Melbourne in person if we don't have an answer soon.
Of course, if we don't have an answer before Wednesday and my blood tests come back normal I will have cycle 2 of DTIC I would expect, which I don't really want either. Although my veins are finally starting to come back a bit I think! For someone who hates needles.....man I have them all the time!!
My biggest issue at the moment is Matt. If only there was an easy way to help our kids through this stuff.....
When I wake up in the mornings, my cough is at it's worst. It hacks for about 30 mins and sounds dreadful, kind of between choking and vomiting, (sorry for the graphics but I am trying to get you to see what Matty sees!). Yesterday morning, I had come down for brekky and was sitting at the bench next to the fish and in front of Matt's teddy bear. I started my coughing fit....Matt came over took his teddy and asked me to move away from the fish because if I coughed on them they would catch cancer and die.
Now while that hurt terribly for me, can you even begin to imagine what is going on in his head? How scared he must be? How he sees this situation? My poor baby boy.
Then add to that the fact he cries everytime we part because he thinks I am going back to hospital and he doesn't like that. It's really, really awful. I wish I could take it all away for him. A 5 year old shouldn't have to worry about awful stuff like that. His biggest worry should be whether Andy is going to try and play with his favourite toy!!
Anyway, subject change....it's my birthday tomorrow...38. My God, where does the time go! I am catching up with an old friend on Friday and I have been thinking about old times hanging out as teenagers. Life was so simple back then, I wish you had the wisdom as a teenager to appreciate it! Instead, you spend all your time though complaining about how tough you have it...funny isn't it.
I don't think there is anything else to report. Everything else is same old, same old. The trivia night is looking good, just a reminder to make sure you RSVP to Sharon with definite numbers as soon as you can if you are going.
Till next time xxxx
NEVER, NEVER, NEVER GIVE UP
It was quite funny actually, my appointment today was with the palliative care doctor. I had no idea I had an appointment and when the community nurse, Jenelle, got here she had to ring him to get different anti-nausea medication for me. When she spoke to him he said, "Oh, she is next on my list", and Jenelle said "Well she's sitting right here in front of me so I am guessing she won't be next up!". Woops!!
She quickly set up my pump and thankfully Jason was home today so he raced me straight up there. They waited for me to get there which I thought was nice but they didn't change any of my drugs, just added this anti-nausea one.
For some reason it can't go in the same line as the pump so they had to put in another sub-cut butterfly needle. Now I have one in either side of my tummy which means I am going to have to sleep on my back. Oh no.....how will I ever survive!
You may have noticed I am feeling a bit down about the whole thing today. I think I have had enough. Time to wake up from the nightmare and get on with life I think.........
I weighed myself on their scales at the clinic today too, I can't remember if I had already written on here just before they admitted me to hospital I was 75kg of which 13kg was fluid as my usual weight is 62kg. I weighed today at 65kg so all that excess fluid has just about gone which is great! I am guessing it also keeps fluid down around my organs so fingers crossed that the heart won't start getting fluid build up around it again.
Do you believe they still don't have the B-raf result. We ended up ringing yesterday because we couldn't wait until my appointment on Monday, but they still don't have it. That's been 4 weeks! I think Jason may actually go down and speak to the pathologists in Melbourne in person if we don't have an answer soon.
Of course, if we don't have an answer before Wednesday and my blood tests come back normal I will have cycle 2 of DTIC I would expect, which I don't really want either. Although my veins are finally starting to come back a bit I think! For someone who hates needles.....man I have them all the time!!
My biggest issue at the moment is Matt. If only there was an easy way to help our kids through this stuff.....
When I wake up in the mornings, my cough is at it's worst. It hacks for about 30 mins and sounds dreadful, kind of between choking and vomiting, (sorry for the graphics but I am trying to get you to see what Matty sees!). Yesterday morning, I had come down for brekky and was sitting at the bench next to the fish and in front of Matt's teddy bear. I started my coughing fit....Matt came over took his teddy and asked me to move away from the fish because if I coughed on them they would catch cancer and die.
Now while that hurt terribly for me, can you even begin to imagine what is going on in his head? How scared he must be? How he sees this situation? My poor baby boy.
Then add to that the fact he cries everytime we part because he thinks I am going back to hospital and he doesn't like that. It's really, really awful. I wish I could take it all away for him. A 5 year old shouldn't have to worry about awful stuff like that. His biggest worry should be whether Andy is going to try and play with his favourite toy!!
Anyway, subject change....it's my birthday tomorrow...38. My God, where does the time go! I am catching up with an old friend on Friday and I have been thinking about old times hanging out as teenagers. Life was so simple back then, I wish you had the wisdom as a teenager to appreciate it! Instead, you spend all your time though complaining about how tough you have it...funny isn't it.
I don't think there is anything else to report. Everything else is same old, same old. The trivia night is looking good, just a reminder to make sure you RSVP to Sharon with definite numbers as soon as you can if you are going.
Till next time xxxx
NEVER, NEVER, NEVER GIVE UP
Sunday, September 20, 2009
Side Effects
Well, it seems like those dreaded chemo side effects have finally caught up with me. They told me the worst time would be 7 - 14 days after treatment and we are smack bang in the middle of that now.
The nausea is the most prevalent thing, but I got a fright last night when my nose started bleeding profusely! I freaked out. Of course it always seems a lot worse than it actually is when it's night time and you aren't expecting it. Once I checked the informamation they gave me about DTIC and it's side effects and saw that bleeding is one of them I felt a bit better. I find comfort in knowing why something is happening. I may not understand or agree with it, but if I know why I feel better somehow.
The pump has been running like a gem the past 24 hours. Unfortunately, we had a bit of a hiccough with it, not last night but the night before. Firstly, it kept stopping. It would go for 20 - 30 mins, beep and then stop. I would fiddle with it for a bit and it would start again. They came out and swapped it for a new one because I obviously can't be fiddling with it during the night all night. It seems when they reset the new pump they had set it too fast as it ran through during the night and was finished before I woke up. This was not good given they had been burning off on Saturday so I had been coughing all Saturday afternoon/night so I was in a bit of pain in the morning with no drugs from the pump!
Anyway, the nurse came around mid morning and fixed it all up for me, so the pain was back under control but unfortunately there's not too much more they can do for the nausea.
Oh, I finally had one of those green juices yesterday. Yes I am a procrastinator!!! It wasn't awful, but you cerainly won't find me running to the fridge to find some more! The juices are really good for the nausea too. When you feel like you can't stomach any food at least you know you are getting some good stuff - nutrients and stuff.
My friends came over on Saturday and it was so wonderful to see them. You know real friends when it can be so long since you have seen each other but it was just like we picked up where we had left off all those years ago. I said there were 3 coming but there were actually 4 and then I had another visit later in the day from another 2. I am feeling very spoilt!
Jason has gone back to work today. Let's see how he goes.....I am guessing his feet won't even touch the ground today, it has been 4 weeks now since he was in the office. It will be nice for him to get out into the real world again and try to get some normality back into his life. Well, as much as you can under the circumstances.
Well, I'm off to have my nebuliser and hopefully stop this cough for a bit.
Talk soon xxxx
NEVER, NEVER, NEVER GIVE UP!
The nausea is the most prevalent thing, but I got a fright last night when my nose started bleeding profusely! I freaked out. Of course it always seems a lot worse than it actually is when it's night time and you aren't expecting it. Once I checked the informamation they gave me about DTIC and it's side effects and saw that bleeding is one of them I felt a bit better. I find comfort in knowing why something is happening. I may not understand or agree with it, but if I know why I feel better somehow.
The pump has been running like a gem the past 24 hours. Unfortunately, we had a bit of a hiccough with it, not last night but the night before. Firstly, it kept stopping. It would go for 20 - 30 mins, beep and then stop. I would fiddle with it for a bit and it would start again. They came out and swapped it for a new one because I obviously can't be fiddling with it during the night all night. It seems when they reset the new pump they had set it too fast as it ran through during the night and was finished before I woke up. This was not good given they had been burning off on Saturday so I had been coughing all Saturday afternoon/night so I was in a bit of pain in the morning with no drugs from the pump!
Anyway, the nurse came around mid morning and fixed it all up for me, so the pain was back under control but unfortunately there's not too much more they can do for the nausea.
Oh, I finally had one of those green juices yesterday. Yes I am a procrastinator!!! It wasn't awful, but you cerainly won't find me running to the fridge to find some more! The juices are really good for the nausea too. When you feel like you can't stomach any food at least you know you are getting some good stuff - nutrients and stuff.
My friends came over on Saturday and it was so wonderful to see them. You know real friends when it can be so long since you have seen each other but it was just like we picked up where we had left off all those years ago. I said there were 3 coming but there were actually 4 and then I had another visit later in the day from another 2. I am feeling very spoilt!
Jason has gone back to work today. Let's see how he goes.....I am guessing his feet won't even touch the ground today, it has been 4 weeks now since he was in the office. It will be nice for him to get out into the real world again and try to get some normality back into his life. Well, as much as you can under the circumstances.
Well, I'm off to have my nebuliser and hopefully stop this cough for a bit.
Talk soon xxxx
NEVER, NEVER, NEVER GIVE UP!
Friday, September 18, 2009
My new friend - "the pump"
Well the new pump is great!
I woke up this morning and felt the most like a normal person, mostly pain free, that I have felt in months. It was great!!
The better news was, that the pump had actually stopped working during the night so I hadn't even got my full dose. It makes me think how good I will feel tomorrow morning, can't wait! The nurses fixed it up when they got here mid morning but it means that the timing is out now with it needing to be changed at 5:30am! Which I think is probably a bigger issue for them than me, given they have to come here to do it whereas I just have to wait. They will manage it over the next few days though to try and get it back to a more reasonable timing.
They are so wonderful and helpful. I am very lucky when it comes to all that kind of stuff. I always seem to be lucky enough to get the the really sweet helpful nurses. She makes me laugh, I am starting to think she is actually coming to have a nurse and play with Hamish rather than to see me!
The massage was great too! I have to wonder if that also led to the good feeling when I woke this morning. There is a lot to be said for the power of touch and when it comes to healing I think it's integral.
The other thing that has blown me away is people organising fund raising for us. Thank you so much to you. Again we appreciate it more than you can imagine. Every little bit helps Jason the boys and I and the fact that they will be held in different areas with different groups of people just helps to make it inclusive of everyone who wants to be involved.
So for those that are interested, I know of 2 definite events...a trivia night at North Ryde RSL on 9th Oct, and a night at Glenmore Heritage Valley Golf Club Mulgoa not sure on the date yet, but not too far away. I will keep you posted on details as I become aware of them. They should both be fun nights from what I have heard is in store.
I am a bit excited for this weekend, 3 of my best friends from high school are coming to visit and I haven't seen them in YEARS. It's kind of sad that shitty stuff finally brings you back face to face, but great that we have the opportunity to catch up again. Love you guys.
I am ready for a big sleep tonight, Matt had an earache last night so kept Jason and I up for most of the night, so it will be nice to have a decent sleep and with the new medication, if the relief is constant I should sleep soundly. Can't wait!!!
Sleep well
NEVER, NEVER, NEVER GIVE UP. xxxx
I woke up this morning and felt the most like a normal person, mostly pain free, that I have felt in months. It was great!!
The better news was, that the pump had actually stopped working during the night so I hadn't even got my full dose. It makes me think how good I will feel tomorrow morning, can't wait! The nurses fixed it up when they got here mid morning but it means that the timing is out now with it needing to be changed at 5:30am! Which I think is probably a bigger issue for them than me, given they have to come here to do it whereas I just have to wait. They will manage it over the next few days though to try and get it back to a more reasonable timing.
They are so wonderful and helpful. I am very lucky when it comes to all that kind of stuff. I always seem to be lucky enough to get the the really sweet helpful nurses. She makes me laugh, I am starting to think she is actually coming to have a nurse and play with Hamish rather than to see me!
The massage was great too! I have to wonder if that also led to the good feeling when I woke this morning. There is a lot to be said for the power of touch and when it comes to healing I think it's integral.
The other thing that has blown me away is people organising fund raising for us. Thank you so much to you. Again we appreciate it more than you can imagine. Every little bit helps Jason the boys and I and the fact that they will be held in different areas with different groups of people just helps to make it inclusive of everyone who wants to be involved.
So for those that are interested, I know of 2 definite events...a trivia night at North Ryde RSL on 9th Oct, and a night at Glenmore Heritage Valley Golf Club Mulgoa not sure on the date yet, but not too far away. I will keep you posted on details as I become aware of them. They should both be fun nights from what I have heard is in store.
I am a bit excited for this weekend, 3 of my best friends from high school are coming to visit and I haven't seen them in YEARS. It's kind of sad that shitty stuff finally brings you back face to face, but great that we have the opportunity to catch up again. Love you guys.
I am ready for a big sleep tonight, Matt had an earache last night so kept Jason and I up for most of the night, so it will be nice to have a decent sleep and with the new medication, if the relief is constant I should sleep soundly. Can't wait!!!
Sleep well
NEVER, NEVER, NEVER GIVE UP. xxxx
Wednesday, September 16, 2009
Crappy day - with some good stuff too though!
First, I want to thank our mystery Santa shopper who obviously reads this, based on the package left on our front doorstep this morning. I didn't get to juicing the cabbage today but I will tomorrow, I promise! And to everyone else for your support it has been truly overwhelming and we are so grateful that we are lucky enough to such beautiful friends and family. Thank you.
I decided today that the crappy feeling is the chemo side effects, the nausea is getting worse and unfortunately the pain is back with avengence! Not good when you are still coughing incessantly.
On the upside though, the nurse who comes out to see me regularly can fix it all! She made a couple of phone calls and organised for more pain relief and nausea medication so by this time tomorrow I expect to be on top of the world!
It was great to see this nurse at work.....she has obviously been doing it for a while. She got on the phone to the Palliative care doctor at the hospital who of course wanted to admit me again to "stabilise" me. She very nicely but firmly suggested that perhaps we could try getting me onto a pump at home to avoid another hospital stay given I have young children with whom I would like to be with at home.
She managed to convince him, thanks so much Jenelle! She bought us some time so at least we have a chance to see if the pump can work before they will try to admit me again.
I am really amazed at how much community health assistance is around. I guess you don't normally have a need for it so it's not something you would just happen to stumble across. They have a child bereavement counsellor that Matt can sit down with and we can see where he is at with all of this. The nurse was here for about 2.5 hours and in that time saw Matt really acting up, which we can only assume is his way of reacting to everything going on. Talking to this lady will hopefully give him a chance to let out some stuff.....and help us understand a little better what's going on in his head.....if that's possible!!! Oh, and I think the counselling is free!
If nothing else is achieved he will have the hugest 5 year old medical vocabulary in the world. It's amazing what he remembers and then regurgitates in the correct context which is more surprising.
Apart from new drugs tomorrow, I have another high point planned. I have an oncology massage booked at 2pm. I can't wait. He comes to your house so it's all stress free I basically just have to move from the chair to the massage table relax and it's done. Doesn't get any better than that!
Best be off to sleep now xxx
NEVER, NEVER, NEVER GIVE UP!
I decided today that the crappy feeling is the chemo side effects, the nausea is getting worse and unfortunately the pain is back with avengence! Not good when you are still coughing incessantly.
On the upside though, the nurse who comes out to see me regularly can fix it all! She made a couple of phone calls and organised for more pain relief and nausea medication so by this time tomorrow I expect to be on top of the world!
It was great to see this nurse at work.....she has obviously been doing it for a while. She got on the phone to the Palliative care doctor at the hospital who of course wanted to admit me again to "stabilise" me. She very nicely but firmly suggested that perhaps we could try getting me onto a pump at home to avoid another hospital stay given I have young children with whom I would like to be with at home.
She managed to convince him, thanks so much Jenelle! She bought us some time so at least we have a chance to see if the pump can work before they will try to admit me again.
I am really amazed at how much community health assistance is around. I guess you don't normally have a need for it so it's not something you would just happen to stumble across. They have a child bereavement counsellor that Matt can sit down with and we can see where he is at with all of this. The nurse was here for about 2.5 hours and in that time saw Matt really acting up, which we can only assume is his way of reacting to everything going on. Talking to this lady will hopefully give him a chance to let out some stuff.....and help us understand a little better what's going on in his head.....if that's possible!!! Oh, and I think the counselling is free!
If nothing else is achieved he will have the hugest 5 year old medical vocabulary in the world. It's amazing what he remembers and then regurgitates in the correct context which is more surprising.
Apart from new drugs tomorrow, I have another high point planned. I have an oncology massage booked at 2pm. I can't wait. He comes to your house so it's all stress free I basically just have to move from the chair to the massage table relax and it's done. Doesn't get any better than that!
Best be off to sleep now xxx
NEVER, NEVER, NEVER GIVE UP!
Monday, September 14, 2009
The Au Pair!
Well, Melissa, our Au Pair started today.
For those of you that didn't know, Jason did all the organising and interviewing because I was in hospital, so I met her for the first time this morning.
It seems like he has done a good job! She's not Swedish, with a figure to envy Jennifer Hawkins, but from the US with a love for kids and really easy going. Of course it's very early days yet, but from the conversations we have had so far the match seems pretty good. She seemed to handle witching hour in her stride which I think is an impressive feat for anybody let alone a first day on the job carer.
I am feeling a bit crappy today......can't figure out if it's lack of sleep, pain or chemo side effects but I just don't feel right. It kinda makes everything feel crappy. It's 11pm and I am about to have my shower for the day. I guess on the upside, it meant I had a lot of rest, and I think sleep is one of the best healers.
Oh and the juicer is fantastic! I am a big fan of carrot juice....yummo. I have found though that adding mandarins in their skins can spoil a very nice juice so make a note of that one. I am going to start experimenting tomorrow with different veges that are supposed to support different parts of your body. Some of them sound pretty ordinary though, there is a green juice that has like cabbage, spinach, celery, capsicum and parsley. Doesn't that sound appetising!! Jason assures me it doesn't have to taste great, just as long as it's doing something good for you is all that matters.
Anyway, I am getting these recipes from the Ian Gawler cookbook so if anyone knows of any other juice recipes let me know and I'll give them a go. It couldn't get worse than cabbage juice could it??
Well I'd better go have this shower, until next time
NEVER, NEVER, NEVER GIVE UP xxxx
For those of you that didn't know, Jason did all the organising and interviewing because I was in hospital, so I met her for the first time this morning.
It seems like he has done a good job! She's not Swedish, with a figure to envy Jennifer Hawkins, but from the US with a love for kids and really easy going. Of course it's very early days yet, but from the conversations we have had so far the match seems pretty good. She seemed to handle witching hour in her stride which I think is an impressive feat for anybody let alone a first day on the job carer.
I am feeling a bit crappy today......can't figure out if it's lack of sleep, pain or chemo side effects but I just don't feel right. It kinda makes everything feel crappy. It's 11pm and I am about to have my shower for the day. I guess on the upside, it meant I had a lot of rest, and I think sleep is one of the best healers.
Oh and the juicer is fantastic! I am a big fan of carrot juice....yummo. I have found though that adding mandarins in their skins can spoil a very nice juice so make a note of that one. I am going to start experimenting tomorrow with different veges that are supposed to support different parts of your body. Some of them sound pretty ordinary though, there is a green juice that has like cabbage, spinach, celery, capsicum and parsley. Doesn't that sound appetising!! Jason assures me it doesn't have to taste great, just as long as it's doing something good for you is all that matters.
Anyway, I am getting these recipes from the Ian Gawler cookbook so if anyone knows of any other juice recipes let me know and I'll give them a go. It couldn't get worse than cabbage juice could it??
Well I'd better go have this shower, until next time
NEVER, NEVER, NEVER GIVE UP xxxx
Saturday, September 12, 2009
I'm Home
Wow, the difference between waking up to a lady with a needle trolley and your 3 beautiful sons is incredible. So incredibly happy to be home at last.
While in hospital I met people who have been there for months at a time, their strength amazes me, I have no idea how they do it. It makes my 2 weeks pale in comparison.
The trickiest thing so far is keeping on top of the "drug regimen". Someone going from never taking medication to some ridiculous amount of tablets per day that I have to take at certain times then add to that nebulisers and "mixes", it's all a bit foreign. I used to wonder why people needed pill boxes but now I get it!
As for the anxiety I managed to get through the first day without trying to take over the household again let's see if I can keep it up. If Jason has anything to do with it I'll have no choice but to be couch bound with everybody waiting on me hand and foot.
As for how I feel today physically the cough is getting worse again, I'm 3 days after Chemo and still no vomitting but I think the fatigue is starting. Emotionally happy to be home but still can't comprehend my new reality.
By the way, bought a you beaut juicing machine and plan to use it tomorrow so I will let you know how it goes. Apparently juicing is considered to be a great way to get nutrients and vitamins when you are figthing cancer.
NEVER, NEVER, NEVER GIVE UP xxx
While in hospital I met people who have been there for months at a time, their strength amazes me, I have no idea how they do it. It makes my 2 weeks pale in comparison.
The trickiest thing so far is keeping on top of the "drug regimen". Someone going from never taking medication to some ridiculous amount of tablets per day that I have to take at certain times then add to that nebulisers and "mixes", it's all a bit foreign. I used to wonder why people needed pill boxes but now I get it!
As for the anxiety I managed to get through the first day without trying to take over the household again let's see if I can keep it up. If Jason has anything to do with it I'll have no choice but to be couch bound with everybody waiting on me hand and foot.
As for how I feel today physically the cough is getting worse again, I'm 3 days after Chemo and still no vomitting but I think the fatigue is starting. Emotionally happy to be home but still can't comprehend my new reality.
By the way, bought a you beaut juicing machine and plan to use it tomorrow so I will let you know how it goes. Apparently juicing is considered to be a great way to get nutrients and vitamins when you are figthing cancer.
NEVER, NEVER, NEVER GIVE UP xxx
Thursday, September 10, 2009
Going home!
Hooray.....I am going home this arvo!
I don't want to get too excited though until I am actually walking out the door. If there is one thing you learn very quickly it's that you have to be flexible. You have to be ready to change all plans from one hour to the next. That's a little difficult to come to terms with when you are a control freak like me.
There is nothing worse than losing control, and I find that I have lost control everywhere. Maybe that's what this is all about for me.........a lesson in learning to let go. Pretty drastic measure to go to though I must say. It even makes the whole going home event difficult, while I am obviously thrilled to be going home, I am also a bit apprehensive.......
Everything has changed now. I can't do the things I used to do, I won't be able to do anything much really, except hang out on the lounge and spend as much time with my beautiful boys as I can. While that does sound very appealing, for someone who is a control freak, very anal, and likes to be the one doing all the work because of course no-one can do it as well as me, this is a very daunting prospect.
I am still struggling to come to terms with how 3 weeks ago I was researching buying a campertrailer for family holidays for the next 15 years or so with the boys, and within 24 hours your world is turned upside down and the next thing you are planning a funeral. How does that happen? And so suddenly.
Anyway, on a brighter note my first chemo cycle seems to have gone OK so far, (touch wood). Minimal nausea and no vomiting. Apparently the worst time is 7-14 days after infusion so maybe I shouldn't be getting too excited just yet!!
With any luck though, I won't need to go back onto this drug because my result for the b-raf gene will have come back positive and I will be able to move on to the new trial drug in a fortnight. Then I'll really give this Melanoma what for. Man has it picked the wrong body to take up residence.
Well, that's it for now xxx
NEVER, NEVER, NEVER GIVE UP!
I don't want to get too excited though until I am actually walking out the door. If there is one thing you learn very quickly it's that you have to be flexible. You have to be ready to change all plans from one hour to the next. That's a little difficult to come to terms with when you are a control freak like me.
There is nothing worse than losing control, and I find that I have lost control everywhere. Maybe that's what this is all about for me.........a lesson in learning to let go. Pretty drastic measure to go to though I must say. It even makes the whole going home event difficult, while I am obviously thrilled to be going home, I am also a bit apprehensive.......
Everything has changed now. I can't do the things I used to do, I won't be able to do anything much really, except hang out on the lounge and spend as much time with my beautiful boys as I can. While that does sound very appealing, for someone who is a control freak, very anal, and likes to be the one doing all the work because of course no-one can do it as well as me, this is a very daunting prospect.
I am still struggling to come to terms with how 3 weeks ago I was researching buying a campertrailer for family holidays for the next 15 years or so with the boys, and within 24 hours your world is turned upside down and the next thing you are planning a funeral. How does that happen? And so suddenly.
Anyway, on a brighter note my first chemo cycle seems to have gone OK so far, (touch wood). Minimal nausea and no vomiting. Apparently the worst time is 7-14 days after infusion so maybe I shouldn't be getting too excited just yet!!
With any luck though, I won't need to go back onto this drug because my result for the b-raf gene will have come back positive and I will be able to move on to the new trial drug in a fortnight. Then I'll really give this Melanoma what for. Man has it picked the wrong body to take up residence.
Well, that's it for now xxx
NEVER, NEVER, NEVER GIVE UP!
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