Yesterday evening I posted on Facebook that I was feeling almost human again - which was true - apart from a sore mouth and a sore throat I was doing OK.
In the middle of the night I woke up feeling really achy, particularly in my arms and back, and I was cold. I woke Simon up as I was trying to find my glass of water to take some pain killers, at which point he noticed that I was a bit feverish, which is not a good sign. If my temperature goes above a certain point, I have to go straight to hospital.
Simon managed to both find and operate the thermometer, which declared my temperature to be 37.1 - a bit high, but not so high to determine a trip to hospital. By now I realised I actually felt quite sick, but we weren't sure what to do. My Mum is staying with us, and we decided to refer to her wisdom - Simon and I neither being in a position to make a rational judgement. NHS Direct was called, paracetamol was taken and in the end we all managed to get a little sleep.
It surprised me however, how quickly I went from feeling fine, to feeling really quite ill. Went to the GP this morning and have been prescribed various germ killers, so should be back to feeling OK again in a day or two.
Tuesday 25 October 2011
Monday 24 October 2011
New Treatment Verdict
So, nearly a week out from the start of the new regime of Taxotere, and its been... interesting.
I'm definitely suffering more with this treatment than the FEC, although in a very different way. On the up side - no nausea or sickness, which I consider to be a big bonus. The tiredness has been a little more extreme as well - this is the first day I'm not feeling exhausted, so I've bounced back much more slowly than on the previous drugs. Usually by the Friday after treatment, I'm feeling OK-ish, so it's taken an extra 3 days to return to relative normality. In fact, I felt better the day after than I did on Saturday (which was the worst day of all - I even stopped feeling guilty about people doing things for me - a sure sign that I'm poorly).
The main difference has been the pain however - one of the side effects of Taxotere is joint pain, and I have been suffering with it. It's not so bad that it's unbearable, but just enough to make it difficult to relax - and to fall asleep. I'm pretty much able to keep on top of it with a combination of paracetamol and ibuprofen. The wost pain is in the balls of my feet - they feel like they're badly bruised, so walking, especially first thing in the morning can be quite painful. I've also been getting a lot of tumour flare, which is a bit like being stabbed in the chest with needles every few minutes.
The overall effect again though, is much like you feel when you're coming down with the flu - just this lot I'm a bit closer to the flu than the last lot, and with aches and pains rather than sickliness. Another new aspect has been that my taste buds have gone into hibernation - nothing tastes of anything, with the exception of citrus and chocolate (that I have discovered so far). Chilli is a taste of the past, and salt is a foreign country - mostly everything tastes of cardboard, so most of food sensation comes from the texture. This is a standard side effect to the drugs I'm on, and can take some time to recover from even after the end of treatment - which for someone who loves good food, fills me with horror.
Part of the deal with the new drugs are 5 days of injections administered by a nurse who comes to my house, and from the discussions I had with the weekend cover nurse yesterday, part of their function as well as the injections is to keep an eye on my weight, as when people stop being able to taste food, they have a tendency to stop eating enough as well. It's really important for me to maintain a decent weight through the treatments (although I still despair that my clothes are getting a little snug), as I need a cushion in case I get sick.
In other news I went to see another surgeon this week, to discuss my options. He is based in Chelmsford near my parent's house, so logistically it may well be easier as I'll need a lot of care immediately after the op. Chelmsford also has one of the biggest and most well regarded plastic surgery units in Europe. My original understanding was that my only real option for reconstructive surgery would be to have a full implant, as I don't have enough fat on my stomach or back. However, the surgeon I went to see last week has been developing a new procedure to take fat from the inner thighs for reconstruction. I'm not sure how I feel about having a more major surgery than might be necessary, given the risks of nerve damage/scar tissue, but it's good to have more options than just one. I'm going to look further into it and weigh up the pros and cons, but I'm considered to be an ideal candidate for either procedure (i.e. there's not much they need to reconstruct).
I'm definitely suffering more with this treatment than the FEC, although in a very different way. On the up side - no nausea or sickness, which I consider to be a big bonus. The tiredness has been a little more extreme as well - this is the first day I'm not feeling exhausted, so I've bounced back much more slowly than on the previous drugs. Usually by the Friday after treatment, I'm feeling OK-ish, so it's taken an extra 3 days to return to relative normality. In fact, I felt better the day after than I did on Saturday (which was the worst day of all - I even stopped feeling guilty about people doing things for me - a sure sign that I'm poorly).
The main difference has been the pain however - one of the side effects of Taxotere is joint pain, and I have been suffering with it. It's not so bad that it's unbearable, but just enough to make it difficult to relax - and to fall asleep. I'm pretty much able to keep on top of it with a combination of paracetamol and ibuprofen. The wost pain is in the balls of my feet - they feel like they're badly bruised, so walking, especially first thing in the morning can be quite painful. I've also been getting a lot of tumour flare, which is a bit like being stabbed in the chest with needles every few minutes.
The overall effect again though, is much like you feel when you're coming down with the flu - just this lot I'm a bit closer to the flu than the last lot, and with aches and pains rather than sickliness. Another new aspect has been that my taste buds have gone into hibernation - nothing tastes of anything, with the exception of citrus and chocolate (that I have discovered so far). Chilli is a taste of the past, and salt is a foreign country - mostly everything tastes of cardboard, so most of food sensation comes from the texture. This is a standard side effect to the drugs I'm on, and can take some time to recover from even after the end of treatment - which for someone who loves good food, fills me with horror.
Part of the deal with the new drugs are 5 days of injections administered by a nurse who comes to my house, and from the discussions I had with the weekend cover nurse yesterday, part of their function as well as the injections is to keep an eye on my weight, as when people stop being able to taste food, they have a tendency to stop eating enough as well. It's really important for me to maintain a decent weight through the treatments (although I still despair that my clothes are getting a little snug), as I need a cushion in case I get sick.
In other news I went to see another surgeon this week, to discuss my options. He is based in Chelmsford near my parent's house, so logistically it may well be easier as I'll need a lot of care immediately after the op. Chelmsford also has one of the biggest and most well regarded plastic surgery units in Europe. My original understanding was that my only real option for reconstructive surgery would be to have a full implant, as I don't have enough fat on my stomach or back. However, the surgeon I went to see last week has been developing a new procedure to take fat from the inner thighs for reconstruction. I'm not sure how I feel about having a more major surgery than might be necessary, given the risks of nerve damage/scar tissue, but it's good to have more options than just one. I'm going to look further into it and weigh up the pros and cons, but I'm considered to be an ideal candidate for either procedure (i.e. there's not much they need to reconstruct).
Tuesday 18 October 2011
An Interesting 24 Hours
So, its been a fun-filled 24 hours since my last post. First off, I got so annoyed with my hair falling out that I shaved it all off. It turned out that I had quite a lot of hair left, but in patches, so even though it's down to a grade 1, it looks somewhat patchy. Simon and little sis Kate both commented that it looks a bit like I have mange. So now the wig and the beanie hat are being used in earnest. My scalp is quite tender, so the wig is uncomfortable for long periods as I discovered today, but I'm hoping it'll get better.
Next up, first thing this morning we (Kate and I) were off to Wexham Park Hospital in Slough for an urgent blood test to see if my potassium levels were back to normal. We managed to get there by 20 past 9, but they was already a queue of about 30 people waiting for tests. However, because of the urgency of the results required, I was able to jump the queue, which was a relief - I get super paranoid about sitting in waiting rooms in case I pick up a bug.
Then it was back off to Windsor (via Simon's office for my parking pass and Wokingham for provisions) for my chemo appointment. The first piece of news was that my potassium levels were back to normal, so that once I'd seen the oncologist I was OK to go ahead with treatment. Once the usual vitals were recorded I went over to see Dr Adams, who was able to see me pretty quickly.
My MRI scan threw up some interesting results. While the lymph nodes have shrunk nicely, the breast tumour is not shrinking as much as they would like (although this may be a timing issue also - normal hormonal changes affect the appearance of the breast quite significantly, so this could be why it doesn't look as good as maybe it should). So we have a new plan - rather than having the last of my FEC treatments, I've been moved on to the doxetalal. This works in a very different way to the FEC, so hopefully there will be a better response to this treatment. I'll have 2 cycles of this and then a further MRI scan. Depending on the results of that we may then continue with 2 further chemos, or they may move up surgery.
So, while it's not good news, I'm not sure that it's bad news either (apparently it's not unusual, and the lymph node progress in many ways is more important), so it's just news. It also means that my timings will change somewhat - I'll now have a maximum of 7 chemos rather than 8. There is still no news on my general prognosis - this will have to wait until after surgery.
There was some debate over if I would be able to have treatment today, as their general procedure for the doextaxil is to give steroids the day before, but as the decision to switch was only taken this morning, that obviously wasn't possible, and they'd ordered the original set of drugs from the pharmacy. After a few phone calls it was decided that we could go ahead, but with a super steroid dose before the chemo drugs went in, but it would take a few hours to get the new drugs prepared.
So off Kate and I popped to eat our lunch, and then wandered into Windsor and did a little shopping before heading back in for treatment. My veins are getting increasingly difficult, it took the nurse 3 attempts (hand, wrist and finally elbow) to get the needle into a decent vein. It wasn't as painful as on the second treatment, but it was no fun at all. However, once we were in and going there were no further problems.
Hopefully there will be a better response to this treatment, and that the side-effects will be as minimal as with the FEC. One new thing is that I have to have 5 days of injections from this Friday to boost my immune system. These will be administered by a district nurse who will come over to my house to dose me up, which does tie me to the house somewhat. I will be going down to Essex still, as luckily my Mum's next door neighbours are a surgeon and a nurse. This treatment is worse for infection, so the injections are designed to boost white blood cells. It can also cause joint pain, so I'll need to keep on top of that with painkillers. On the plus side, it causes less nausea and less vein pain, so I;m hoping my veins will now recover.
Feeling pretty tired after all of that, so I'm looking forward to a restful week.
Next up, first thing this morning we (Kate and I) were off to Wexham Park Hospital in Slough for an urgent blood test to see if my potassium levels were back to normal. We managed to get there by 20 past 9, but they was already a queue of about 30 people waiting for tests. However, because of the urgency of the results required, I was able to jump the queue, which was a relief - I get super paranoid about sitting in waiting rooms in case I pick up a bug.
Then it was back off to Windsor (via Simon's office for my parking pass and Wokingham for provisions) for my chemo appointment. The first piece of news was that my potassium levels were back to normal, so that once I'd seen the oncologist I was OK to go ahead with treatment. Once the usual vitals were recorded I went over to see Dr Adams, who was able to see me pretty quickly.
My MRI scan threw up some interesting results. While the lymph nodes have shrunk nicely, the breast tumour is not shrinking as much as they would like (although this may be a timing issue also - normal hormonal changes affect the appearance of the breast quite significantly, so this could be why it doesn't look as good as maybe it should). So we have a new plan - rather than having the last of my FEC treatments, I've been moved on to the doxetalal. This works in a very different way to the FEC, so hopefully there will be a better response to this treatment. I'll have 2 cycles of this and then a further MRI scan. Depending on the results of that we may then continue with 2 further chemos, or they may move up surgery.
So, while it's not good news, I'm not sure that it's bad news either (apparently it's not unusual, and the lymph node progress in many ways is more important), so it's just news. It also means that my timings will change somewhat - I'll now have a maximum of 7 chemos rather than 8. There is still no news on my general prognosis - this will have to wait until after surgery.
There was some debate over if I would be able to have treatment today, as their general procedure for the doextaxil is to give steroids the day before, but as the decision to switch was only taken this morning, that obviously wasn't possible, and they'd ordered the original set of drugs from the pharmacy. After a few phone calls it was decided that we could go ahead, but with a super steroid dose before the chemo drugs went in, but it would take a few hours to get the new drugs prepared.
So off Kate and I popped to eat our lunch, and then wandered into Windsor and did a little shopping before heading back in for treatment. My veins are getting increasingly difficult, it took the nurse 3 attempts (hand, wrist and finally elbow) to get the needle into a decent vein. It wasn't as painful as on the second treatment, but it was no fun at all. However, once we were in and going there were no further problems.
Hopefully there will be a better response to this treatment, and that the side-effects will be as minimal as with the FEC. One new thing is that I have to have 5 days of injections from this Friday to boost my immune system. These will be administered by a district nurse who will come over to my house to dose me up, which does tie me to the house somewhat. I will be going down to Essex still, as luckily my Mum's next door neighbours are a surgeon and a nurse. This treatment is worse for infection, so the injections are designed to boost white blood cells. It can also cause joint pain, so I'll need to keep on top of that with painkillers. On the plus side, it causes less nausea and less vein pain, so I;m hoping my veins will now recover.
Feeling pretty tired after all of that, so I'm looking forward to a restful week.
Monday 17 October 2011
Almost halfway through
Hopefully, tomorrow will mark the halfway point in receiving my chemotherapy, and the last of the FEC treatments. I say hopefully - I received a phone call from the chemo nurses this afternoon to say that there is an issue with my potassium levels, and I need to go for some further blood tests. Likely that this is nothing to worry about - it can be caused by diet, or because the cancer cells are dying and transferring their potassium in my blood, although it can also be an indicator of kidney function problems. We shall see. My chemo appointment is due for 12pm, so if I can get the bloods done nice and early they'll be able to make a decision on the day.
Since my last update, I've been keeping myself busy, although arguably a little too busy. I've worked out that if I overdo it on one day, I need two full days of rest before I feel better again. I completed all the things on my first to do list, and have carried on trying to stay productive. I'm still making my own bread (which goes very nicely with the homemade jam), although I've given up kneading by hand, and transferred that job to the food mixer, which makes it much less tiring. I've also, 4 years after getting married, printed out some of our wedding photos and put them up in the house, along with some of our other pictures. Making progress on the house, and it's starting to look much more like home. My next task is to start sewing the curtains for the living room. Most of that is hand sewing, which is time consuming, but can be done at my own pace, which is good.
My parents came over to visit this week and helped out with the house updates, and, provided that I have my treatment tomorrow, I'll be going to Essex for a few days to recuperate.
My hair is now falling out in earnest - I doubt that it will last much longer than a week. In fact, given the amount I've lost already I'm amazed I have any hair left to speak of at all. Still, the wig is waiting and ready to go, so it's not too much of a bother for me, although the continuous shedding is annoying.
I should also get my second MRI results tomorrow, and with any luck that should give a better indication of my general prognosis. It seems that the tumour is shrinking, but it can be difficult to judge, so I'm looking forward to seeing the results.
Since my last update, I've been keeping myself busy, although arguably a little too busy. I've worked out that if I overdo it on one day, I need two full days of rest before I feel better again. I completed all the things on my first to do list, and have carried on trying to stay productive. I'm still making my own bread (which goes very nicely with the homemade jam), although I've given up kneading by hand, and transferred that job to the food mixer, which makes it much less tiring. I've also, 4 years after getting married, printed out some of our wedding photos and put them up in the house, along with some of our other pictures. Making progress on the house, and it's starting to look much more like home. My next task is to start sewing the curtains for the living room. Most of that is hand sewing, which is time consuming, but can be done at my own pace, which is good.
My parents came over to visit this week and helped out with the house updates, and, provided that I have my treatment tomorrow, I'll be going to Essex for a few days to recuperate.
My hair is now falling out in earnest - I doubt that it will last much longer than a week. In fact, given the amount I've lost already I'm amazed I have any hair left to speak of at all. Still, the wig is waiting and ready to go, so it's not too much of a bother for me, although the continuous shedding is annoying.
I should also get my second MRI results tomorrow, and with any luck that should give a better indication of my general prognosis. It seems that the tumour is shrinking, but it can be difficult to judge, so I'm looking forward to seeing the results.
Tuesday 4 October 2011
Not Taking Things Lying Down
I had an interesting chat yesterday with Emma, who is the lovely lady who comes round to clean our house once a week. She reminded me that it's OK to admit you're having a bad day, and that not doing much is not a sign of failure. This got me thinking a lot.
Yes it is OK for me to have bad days where I do virtually nothing, yesterday was one of those days (where even the act of getting up and dressed was more effort than I could muster without having to lie down again). However, I find these days very frustrating, for 2 reasons.
1. (The psychological one) I'm quite sensitive to accusations of being lazy. My perception when I was growing up (which may or may not be accurate), was that people thought that I was lazy, so I've tried quite deliberately not to be, although I'm not sure I always succeed. I like to be doing things, and I feel guilty doing nothing. I feel bad that in the last few weeks I've not been doing anything "useful", I've not been able to continue working as much as I would have liked, and I've not been doing anything else particularly constructive either. I know that this is a bit silly, given my circumstances, but it's difficult to change your conditioning.
2. (The slightly darker, morbid one) I feel I should continue to be as active as possible, because, quite frankly these may be the best days left to me. I may not get better, I may get worse, and look back on these days of relative leisure and wish I had done more. It's not a thought that comes to the front of my mind very often, but it's there lurking in the background.
So, I am trying to stay active and do useful things, but I think I have to admit that not coming up to my fairly high standards is not the end of the world at the moment. I've decided to start writing little To Do lists, to cover stuff to do on a particular day, or in a particular week. I like lists, I love the feeling of crossing something off as done. I will (try) not (to) beat myself up over not completing everything. Some things will be simple, some thing will be fun, some things will, knowing me, be completely unachievable, but it will give me a feeling of purpose.
Today on my list I have:
Make plum jam
Make apple crumble
Write blog post
Research curtain fabric and shower screens
And I can almost cross off one already. My lists will often have food based items in them, as my brain files these as both useful and fun (and tasty, food is very important to me at the moment, even when I'm not feeling well).
Aside from my self-analysis, I'm feeling OK a week out from chemo number 3. Again more tired than rounds 2 or 1, and recovered from the sickness that afflicted me on the first day. My hair is still largely in place despite not using the cold cap, but I'm, expecting quite a lot will fall out before the next treatment (there seems to be a 3 week lag between treatment and shedding). Yesterday I was simply exhausted all day, but today I have woken up feeling much perkier.
Yes it is OK for me to have bad days where I do virtually nothing, yesterday was one of those days (where even the act of getting up and dressed was more effort than I could muster without having to lie down again). However, I find these days very frustrating, for 2 reasons.
1. (The psychological one) I'm quite sensitive to accusations of being lazy. My perception when I was growing up (which may or may not be accurate), was that people thought that I was lazy, so I've tried quite deliberately not to be, although I'm not sure I always succeed. I like to be doing things, and I feel guilty doing nothing. I feel bad that in the last few weeks I've not been doing anything "useful", I've not been able to continue working as much as I would have liked, and I've not been doing anything else particularly constructive either. I know that this is a bit silly, given my circumstances, but it's difficult to change your conditioning.
2. (The slightly darker, morbid one) I feel I should continue to be as active as possible, because, quite frankly these may be the best days left to me. I may not get better, I may get worse, and look back on these days of relative leisure and wish I had done more. It's not a thought that comes to the front of my mind very often, but it's there lurking in the background.
So, I am trying to stay active and do useful things, but I think I have to admit that not coming up to my fairly high standards is not the end of the world at the moment. I've decided to start writing little To Do lists, to cover stuff to do on a particular day, or in a particular week. I like lists, I love the feeling of crossing something off as done. I will (try) not (to) beat myself up over not completing everything. Some things will be simple, some thing will be fun, some things will, knowing me, be completely unachievable, but it will give me a feeling of purpose.
Today on my list I have:
Make plum jam
Make apple crumble
Write blog post
Research curtain fabric and shower screens
And I can almost cross off one already. My lists will often have food based items in them, as my brain files these as both useful and fun (and tasty, food is very important to me at the moment, even when I'm not feeling well).
Aside from my self-analysis, I'm feeling OK a week out from chemo number 3. Again more tired than rounds 2 or 1, and recovered from the sickness that afflicted me on the first day. My hair is still largely in place despite not using the cold cap, but I'm, expecting quite a lot will fall out before the next treatment (there seems to be a 3 week lag between treatment and shedding). Yesterday I was simply exhausted all day, but today I have woken up feeling much perkier.
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