On Tuesday I had another very long wait for my consultation with the doctor- I was in the building for 4 hours and my appointment was about 10 minutes! However, I got chatting with quite a few other women and we had quite a raucous giggle- so much so that when I was eventually called through and complained about my wait time was told that I had been called a lot earlier (but obviously did not hear!!!). Still, it was quite jolly!
Today we still waited 2 hours for chemo, but it turned into a party as it was Julie's last session. She brought in muffins and sweets and the nurses reserved seats so four of us could be together. They made us cups of tea and we giggled through the session- a lot more fun than just watching the poison drip into my veins.
I guess there is a real camaraderie with others going through the same process, and as we are all on the same day every three weeks faces become familiar. Julie and I were trying to plot being in hospital together for our surgery- which would be a hoot, but not sure how possible it would be.
One more chemo to go -WHOOPEE!!- so, in four weeks time I should be over the worst of the horrible side effects. Then just surgery and radiotherapy to follow!!!
Thursday, June 26, 2008
Monday, June 23, 2008
Tomorrow I go back to hospital for blood tests and get ready for more chemo on thursday. I have been really well this last week, and thursday looms sooner than I would wish- the thought of doing it all again is quite depressing! Still, I have only two to go, and will be finished in less than 4 weeks, so I remain positive and am counting the days.
My eyelashes are falling out quite rapidly, and as a result my eyes are quite sore- I feel constantly like I have been crying. They are red and swollen, and the eye itself is quite gritty and watery. The eyebrows are beginning to thin too, but I assume there will be no side effects there!!
I have actually been at work this last week in an administrative, business role, and really enjoyed it. It has been a good focus for me, and motivational, but there is so much yet to do, so I am hoping to remain well for much of the next two cycles so that I can maintain a presence around the building and get on top of a lot of outstanding paperwork.
Oh, and my fingernails are a lot less sore now, and still very much in place- so hopefully they will remain so!!
My eyelashes are falling out quite rapidly, and as a result my eyes are quite sore- I feel constantly like I have been crying. They are red and swollen, and the eye itself is quite gritty and watery. The eyebrows are beginning to thin too, but I assume there will be no side effects there!!
I have actually been at work this last week in an administrative, business role, and really enjoyed it. It has been a good focus for me, and motivational, but there is so much yet to do, so I am hoping to remain well for much of the next two cycles so that I can maintain a presence around the building and get on top of a lot of outstanding paperwork.
Oh, and my fingernails are a lot less sore now, and still very much in place- so hopefully they will remain so!!
Saturday, June 14, 2008
What planet do we come from???
Having put life 'on hold' for so long, we relented and allowed Emily to have some friends over last night to sleep and have fun. It was supposed to be a good weekend healthwise for me, and just a few sweet kids.
However, Nigel and I have had an amazingly stressful week at work, Nigel had surgery on thursday (just moles removed, but still involved theatre, gowns, and deep stitches..), and I am still feeling pretty bleah and achey. But, we forged ahead with true determination!!
In my experience, sleepovers fall into 2 categories: 1. kids sleep 2. they don't!!
You guessed it, we got the second sort!!
A trampoline, Spongebob movie, Chinese banquet, and chicken chasing evening of fun soon turned into our worst nightmare, and involved blood, split heads, vomit and inconsolable crying!
Two kids had left the building by 10pm, and the crying continued despite comforting mugs of hot chocolate. In the end I moved a sleeping bag downstairs and lay with them all wondering what planet I was on to think this would be a good idea!!!
I got back into my bed at 4 am and heard them all awake at 6.30!
A cooked breakfast, some morning TV, and a quick tidy up, and life is almost back to normal, despite amazing sleep deprivation layered on top of stress...............hmm.. I suspect an afternoon nap is in order later!!!
However, Nigel and I have had an amazingly stressful week at work, Nigel had surgery on thursday (just moles removed, but still involved theatre, gowns, and deep stitches..), and I am still feeling pretty bleah and achey. But, we forged ahead with true determination!!
In my experience, sleepovers fall into 2 categories: 1. kids sleep 2. they don't!!
You guessed it, we got the second sort!!
A trampoline, Spongebob movie, Chinese banquet, and chicken chasing evening of fun soon turned into our worst nightmare, and involved blood, split heads, vomit and inconsolable crying!
Two kids had left the building by 10pm, and the crying continued despite comforting mugs of hot chocolate. In the end I moved a sleeping bag downstairs and lay with them all wondering what planet I was on to think this would be a good idea!!!
I got back into my bed at 4 am and heard them all awake at 6.30!
A cooked breakfast, some morning TV, and a quick tidy up, and life is almost back to normal, despite amazing sleep deprivation layered on top of stress...............hmm.. I suspect an afternoon nap is in order later!!!
Monday, June 09, 2008
Too good to be true!!
I have had a great weekend- been up and dressed, making conversation, and eating with the family. All remarkable considering how I have been at this stage on the last 3 cycles. However, last night all my muscles and joints started really aching, and I had an uncomfortable night trying to sleep. It is like a dull ache everywhere, and then random sharp twinges in various bones - they don't last long, but shift quickly to another area. I almost feel I could deal with it better if it was just leg ache, but this dotting around is quite distracting and hard to get a handle on- is it my ankle or chin, or eye socket next?
My fingernails are also feeling really bruised- amazing how that happens so quickly after treatment. I couldn't get the plug out of the bath last night- as my fingers won't grip, and I really struggled this morning to tie up Emily's hair-twisting the bobble was too painful. That feels really pathetic, and I am hoping that they settle down- otherwise the next 9 weeks could be interesting!!
My fingernails are also feeling really bruised- amazing how that happens so quickly after treatment. I couldn't get the plug out of the bath last night- as my fingers won't grip, and I really struggled this morning to tie up Emily's hair-twisting the bobble was too painful. That feels really pathetic, and I am hoping that they settle down- otherwise the next 9 weeks could be interesting!!
Friday, June 06, 2008
Horror stories, part ii- but I am, so far, invincible!
We had a delayed start yesterday, as the pharmacy took an hour and a half to send the correct drugs through! But once I was connected to the drip, the warnings began!!
'You must be aware that you can suffer an immediate allergic reaction to this drug. Here is a call button. The first 30-40 ml of drug are the most critical, but a reaction can take place at any time. If you feel any of these symptoms........press the button, I will stop the treatment, give you oxygen and bleep the doctor.......'
'Are you not going to stay and watch over me????'
'No, your mum can watch!!'
So, the drug drips through- 250ml in one hour. I watched the drip, and mum watched me, and we held our breath. After 100ml I was still alive, and we relaxed a bit, cracked open the wine gums, and chatted to the woman in the next chair. It turned out she has been through all the chemo, surgery and radiotherapy and was now on her years treatment of herceptin.
She had the GCSF injections and was in so much pain she had to buy a mattress topper and sleep on a quilt, because of the bone ache, and could not stand the water of a shower on her thighs or legs! So, I am VERY grateful to have avoided all that. Apparently another patient was actually on diamorphine with the pain- and I escaped- hurrah!
I asked her about the radiotherapy- well, that was okay until the 2 weeks after the treatment finished and then she came out in huge water filled blisters- yummy.
As we were on a roll, of course we had to ask about the nail deal too. 'Well, I have hung on to them, but 5 of my toenails are black, and my fingernails have split- not just at the ends, but right down the middle.....!!!'
I usually quite like being forewarned about things, so I am not taken by surprise, but there seems a huge amount to look forward to before the year is out. Hopefully I can remain invincible! But then I feel overwhelmed with guilt as this woman has been through so much, and I am asking to be spared of even losing my eyebrows.
I am trying to remain in jubilant mood however and not wallow in guilt. Yesterday I felt amazingly well, no slump of ghastliness, absolutely NO nausea, and have woken with an appetite and energy I have not had at this stage of the other cycles, so I am hoping that this drug will be the one I have least problems with.
I also have a dull ache and 'swirling' feeling around the tumour, so I am imagining the drug attacking away and causing the beastie cells to die- hoping the drug to release its viciousness directly into the lump, and not anywhere else in me!!!
'You must be aware that you can suffer an immediate allergic reaction to this drug. Here is a call button. The first 30-40 ml of drug are the most critical, but a reaction can take place at any time. If you feel any of these symptoms........press the button, I will stop the treatment, give you oxygen and bleep the doctor.......'
'Are you not going to stay and watch over me????'
'No, your mum can watch!!'
So, the drug drips through- 250ml in one hour. I watched the drip, and mum watched me, and we held our breath. After 100ml I was still alive, and we relaxed a bit, cracked open the wine gums, and chatted to the woman in the next chair. It turned out she has been through all the chemo, surgery and radiotherapy and was now on her years treatment of herceptin.
She had the GCSF injections and was in so much pain she had to buy a mattress topper and sleep on a quilt, because of the bone ache, and could not stand the water of a shower on her thighs or legs! So, I am VERY grateful to have avoided all that. Apparently another patient was actually on diamorphine with the pain- and I escaped- hurrah!
I asked her about the radiotherapy- well, that was okay until the 2 weeks after the treatment finished and then she came out in huge water filled blisters- yummy.
As we were on a roll, of course we had to ask about the nail deal too. 'Well, I have hung on to them, but 5 of my toenails are black, and my fingernails have split- not just at the ends, but right down the middle.....!!!'
I usually quite like being forewarned about things, so I am not taken by surprise, but there seems a huge amount to look forward to before the year is out. Hopefully I can remain invincible! But then I feel overwhelmed with guilt as this woman has been through so much, and I am asking to be spared of even losing my eyebrows.
I am trying to remain in jubilant mood however and not wallow in guilt. Yesterday I felt amazingly well, no slump of ghastliness, absolutely NO nausea, and have woken with an appetite and energy I have not had at this stage of the other cycles, so I am hoping that this drug will be the one I have least problems with.
I also have a dull ache and 'swirling' feeling around the tumour, so I am imagining the drug attacking away and causing the beastie cells to die- hoping the drug to release its viciousness directly into the lump, and not anywhere else in me!!!
Tuesday, June 03, 2008
More great news (well, not really!!)
Went to Weston Park today for my blood tests and clinic appointment. They gave me my steroids and started explaining possible side effects of the new drug.......
Apparently they will not give me the drug if I forget to take the steroids before I go, as there is a likelihood of anaphylaxis on administration- which sounds fun! And, apart from removing the rest of my hair, and tingling and numbness in my extremities, a strong likelihood of taking my fingernails too- urgghhh!
'How likely?'
'Well, it doesn't happen to everyone. Your best bet is to avoid washing up during treatment!'
Sadly, I went on a website (stupid girl) and read a few thread comments which were less than exciting.
'I have lost 3 fingernails already, has anyone else had this experience?'
'I managed to hang on to my fingernails, but on the last cycle I lost my little toenails........'
I guess it is the same process as losing hair, but one which I had not considered, so another shock for me to process, and lots for you lovelies to pray about!!!
Apparently they will not give me the drug if I forget to take the steroids before I go, as there is a likelihood of anaphylaxis on administration- which sounds fun! And, apart from removing the rest of my hair, and tingling and numbness in my extremities, a strong likelihood of taking my fingernails too- urgghhh!
'How likely?'
'Well, it doesn't happen to everyone. Your best bet is to avoid washing up during treatment!'
Sadly, I went on a website (stupid girl) and read a few thread comments which were less than exciting.
'I have lost 3 fingernails already, has anyone else had this experience?'
'I managed to hang on to my fingernails, but on the last cycle I lost my little toenails........'
I guess it is the same process as losing hair, but one which I had not considered, so another shock for me to process, and lots for you lovelies to pray about!!!
Sunday, June 01, 2008
Sorry not to have been posting much recently- there hasn't been a lot to report.
The extra G-CSF drug drastically improved my health this cycle, and apart from still being a little tired, I have felt relatively 'normal' for the last 10 days. This has been brilliant and gives me great hope for the rest of the treatment.
HOWEVER........
They change my drugs totally this thursday, and I will move from FEC to Taxotere for the next 3 cycles. Apparently it is quite a vicious drug and I will need to take steroids for 3 days before the chemo, as there is a high risk of allergic reactions and severe sickness. Whoopee!
The extra steroids (I already take them after the chemo for a week, but this time will take them before as well) are likely to increase my weight gain as they increase appetite quite markedly, and of course I have not got round to marathon training yet, so am basically sitting on a sofa or lying on the bed for most of the cycle. So, my calorie burning potential is a long way from ideal!!
Also, any remaining hair is likely to disappear during this next round. I have very little left anywhere on my body, but am still clinging to my eyebrows and eyelashes, and would very much like to keep them!! Otherwise I have images of turning into a bowling ball!!
So, although I have a good idea what to expect over the next 9 weeks, some people react very differently to the two separate drugs- I might be better, and there again I may not tolerate it very well at all.
The good news is that I am now half way through the chemo treatment, and can start counting down from thursday onwards, which will be a huge relief .
The extra G-CSF drug drastically improved my health this cycle, and apart from still being a little tired, I have felt relatively 'normal' for the last 10 days. This has been brilliant and gives me great hope for the rest of the treatment.
HOWEVER........
They change my drugs totally this thursday, and I will move from FEC to Taxotere for the next 3 cycles. Apparently it is quite a vicious drug and I will need to take steroids for 3 days before the chemo, as there is a high risk of allergic reactions and severe sickness. Whoopee!
The extra steroids (I already take them after the chemo for a week, but this time will take them before as well) are likely to increase my weight gain as they increase appetite quite markedly, and of course I have not got round to marathon training yet, so am basically sitting on a sofa or lying on the bed for most of the cycle. So, my calorie burning potential is a long way from ideal!!
Also, any remaining hair is likely to disappear during this next round. I have very little left anywhere on my body, but am still clinging to my eyebrows and eyelashes, and would very much like to keep them!! Otherwise I have images of turning into a bowling ball!!
So, although I have a good idea what to expect over the next 9 weeks, some people react very differently to the two separate drugs- I might be better, and there again I may not tolerate it very well at all.
The good news is that I am now half way through the chemo treatment, and can start counting down from thursday onwards, which will be a huge relief .
Subscribe to:
Posts (Atom)