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!
Saturday, October 31, 2009
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
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