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!
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