Note - there are more blogs on 2010 - please click on link on the left-hand side.
Hello to any blog followers still able to stand up after the excesses of the last few days!! There are currently four, sorry three, mince pies left in the tin in the kitchen, should anyone have the space....
Seriously though, (this is a joint effort - Mike typing, Belinda reclining and searching for inspiration in a Vita Sackville-West way, sorry turban. Belinda has just said she has Jennifer to thank for t'hat) today was FEC 2, our own variation on the movies and sequels we've been watching over Christmas.
Rather than a big green ogre (geddit?) there were two syringes of pinkish/red gunge that are reminiscent of cough mixture (Vita says flat cherryade) and some other lovely liquids and are supposed to be doing some good. They made Belinda's arm hurt a lot while the injections were going in :o( but she recovered from that :o)
The day did not begin well (nothing new here) when we arrived to find that the results of the blood test taken on the 21st December showed the blood count to be slightly too low for chemo. Unfortunately nobody thought to mention it until a message was left at 4:30 last night on B's home number (we were at my flat in Clapham) - too late to do anything! Sooo, blood was taken anew at 11:00, we went to do some shopping, went home and had some lunch, then went back at 3:30 for cocktails, todays blood test being fine. Still, at least it fills the day with activities instead of sprawling in front of the TV (which is giving off a wonderful green glow - anyone know a TV repair-person who could give a free opinion on fixability?)
So Belnda is now calmly waiting to see if the background nausea moves centre stage or if she has got in quicker with the pills than last time. She promises a full account of the transition to baldness and the unexpected reactions it engendered in her, just as soon as she stops being as green as the TV screen.
If we don't blog before, have a Happy New Year!! We'll be toasting the bells with ginger ale!!
Wednesday 30 December 2009
Thursday 24 December 2009
Merry Xmas and Happy New Year
Well I meant to give an update after my appt on Monday which I will do, honest, but meanwhile just a quick word to say Happy Xmas! and thank you to everyone for their support this year, it has been really touching and I am sure has contributed hugely to my recovery and general all-round cheer. So I wish you all a great new year.
Am moulting like a spaniel so am just about to get in the shower and take the plunge with the barnet. It'll be wigs on for Xmas as I can no longer bear to keep spitting out hairs and have started finding them in the food. So that's the end of that!
Good cheer x
Am moulting like a spaniel so am just about to get in the shower and take the plunge with the barnet. It'll be wigs on for Xmas as I can no longer bear to keep spitting out hairs and have started finding them in the food. So that's the end of that!
Good cheer x
Saturday 19 December 2009
life, hair and Christmas cheeer
It's a funny thing this blog. It could lead readers of it to think I don't have a life outside cancer. Not true of course, I've been entering into the spirit of Xmas a little, seeing Gabriel's rather wonderful school play, rather sad cos that's now the end of school Xmas plays; meeting up with some ex-SFO chaps and chappesses for a lovely meal and some extradordinarily good gossip which I couldn't possibly repeat here; making mince pies and jam tarts and ice cream and meringues and soups and stews; boring my poor cousin Mary to tears with our Ancestry research about the Zizecli branch of the family whilst enjoying the lovely photos from Bernadette and Fred's wedding and of the latest addition to the family, James Alexander (congratulations you two, he's gorgeous!); wondering why my house never gets any tidier. Does it take some input of which I am ignorant? I do wonder...
But back to the theme. There is some loosening of the old follicles but not yet by the handful. Without wishing to sound ungrateful I am worrying slightly that this is an indication the chemo is not slamming the little white ones hard enough. I know they are likely to reassure me at my oncology appt on Monday that some people don't lose their hair but, not to put too fine a point on it, I want to know if those are the chemo patients who keel over within two years. Does the fact that I have rarely in my life felt fitter than at the moment mean they should be doubling the dose?
The thing is I'm feeling a little disappointed at the lack of information I have been given about outcomes and what I can do to influence them. You would think it stands to reason that if certain things greatly increase the risk of certain cancers, then avoiding them would be even more necessary to avoid recurrence of cancer after treatment than to avoid getting it in the first place. But nobody has told me this in relation to anything.
So for example there is an established link between smoking and lung cancer. We all know about the 107 year-old grandparent who smoked 107 a day since he was born and died in his sleep without a cancerous cell in his body, but we tend nonetheless to accept now that not smoking is a good idea if you want to avoid it. This suggests to me that if you contract lung cancer as a smoker (and have therefore entered the realm of 100% having lung cancer), logically most people would expect that giving up smoking to avoid recurrence is a sensible step. Or conversely that continuing to smoke would be madness. So what about all the other things that have been shown or are strongly suspected to cause cancer and which we are beginning to be told the avoidance of could prevent many cancers if we didn't ingest/inhale/cover ourselves or our work surfaces with them? Nobody has told me whether my decisions to knock alcohol on the head for now (and certainly at the rate I was drinking before to reduce that dramatically forever), to eat less dairy or red meat are jolly sensible because they will help to prevent recurrence or pointless because the die is cast and in fact I am ****ing in the wind.
I am not raising this as a complaint because I want to know whether I needn't miss out on several bottles of Chateau varieux because nothing I now do can alter the risk of the cancer returning (although clearly I'd be mightily miffed if it turned out to be a wasted effort), but because I feel that the one thing you want control of is what you can do to prevent said recurrence. Obvious isn't it? Yet all I've heard thus far from the vast majority of those treating me has been a scathing dismissal of the Bristol Cancer Care centre and similar institutions for their approach to diet and its impact together with anything else that comes under the heading of complementary therapies (with the possible exception of physiotherapy). This despite a fairly clear endorsement in a lot of the pamphlets you get given. I rather mind this, as places like the BCC centre (now Penny Brohn centre), the Breast Cancer Haven in Fulham and the Maggie's Centres around the place appear to me to be looking at areas that should be mainstream advice on the NHS and which has been sadly neglected by it, the hole being filled by these totally admirable charities usually started by someone who suffered from that lack themselves. To have this all dismissed as quackery is in my view a quite appalling neglect of duty - all that anyone in my situation is interested in is how to avoid recurrence. If I have a cancer that is hugely hormone-caused and someone (thank you Mary!) tells me that chocolate can mimic oestrogen, I don't want to be met with the answer " a little of what you fancy does you good" if for me it is actually downright dangerous. The sacrifice of a little seratonin would be outweighed by the sheer delight at knowing I'm not hastening my possible demise - if I am in control of such decisions because I have been given the information.
If anyone has information they can point me to in this (although obviously I shall be pursuing my own research and trying to get answers from the hospital) please do send it to me.
By the way since I started writing this this morning I have tried on a number of precautionary hats and bought one. I think from the one that a little hair got caught in which came away without a hint of pain or resistance I can safely say the farewell process has begun, after all. Watch this (widening) space!
But back to the theme. There is some loosening of the old follicles but not yet by the handful. Without wishing to sound ungrateful I am worrying slightly that this is an indication the chemo is not slamming the little white ones hard enough. I know they are likely to reassure me at my oncology appt on Monday that some people don't lose their hair but, not to put too fine a point on it, I want to know if those are the chemo patients who keel over within two years. Does the fact that I have rarely in my life felt fitter than at the moment mean they should be doubling the dose?
The thing is I'm feeling a little disappointed at the lack of information I have been given about outcomes and what I can do to influence them. You would think it stands to reason that if certain things greatly increase the risk of certain cancers, then avoiding them would be even more necessary to avoid recurrence of cancer after treatment than to avoid getting it in the first place. But nobody has told me this in relation to anything.
So for example there is an established link between smoking and lung cancer. We all know about the 107 year-old grandparent who smoked 107 a day since he was born and died in his sleep without a cancerous cell in his body, but we tend nonetheless to accept now that not smoking is a good idea if you want to avoid it. This suggests to me that if you contract lung cancer as a smoker (and have therefore entered the realm of 100% having lung cancer), logically most people would expect that giving up smoking to avoid recurrence is a sensible step. Or conversely that continuing to smoke would be madness. So what about all the other things that have been shown or are strongly suspected to cause cancer and which we are beginning to be told the avoidance of could prevent many cancers if we didn't ingest/inhale/cover ourselves or our work surfaces with them? Nobody has told me whether my decisions to knock alcohol on the head for now (and certainly at the rate I was drinking before to reduce that dramatically forever), to eat less dairy or red meat are jolly sensible because they will help to prevent recurrence or pointless because the die is cast and in fact I am ****ing in the wind.
I am not raising this as a complaint because I want to know whether I needn't miss out on several bottles of Chateau varieux because nothing I now do can alter the risk of the cancer returning (although clearly I'd be mightily miffed if it turned out to be a wasted effort), but because I feel that the one thing you want control of is what you can do to prevent said recurrence. Obvious isn't it? Yet all I've heard thus far from the vast majority of those treating me has been a scathing dismissal of the Bristol Cancer Care centre and similar institutions for their approach to diet and its impact together with anything else that comes under the heading of complementary therapies (with the possible exception of physiotherapy). This despite a fairly clear endorsement in a lot of the pamphlets you get given. I rather mind this, as places like the BCC centre (now Penny Brohn centre), the Breast Cancer Haven in Fulham and the Maggie's Centres around the place appear to me to be looking at areas that should be mainstream advice on the NHS and which has been sadly neglected by it, the hole being filled by these totally admirable charities usually started by someone who suffered from that lack themselves. To have this all dismissed as quackery is in my view a quite appalling neglect of duty - all that anyone in my situation is interested in is how to avoid recurrence. If I have a cancer that is hugely hormone-caused and someone (thank you Mary!) tells me that chocolate can mimic oestrogen, I don't want to be met with the answer " a little of what you fancy does you good" if for me it is actually downright dangerous. The sacrifice of a little seratonin would be outweighed by the sheer delight at knowing I'm not hastening my possible demise - if I am in control of such decisions because I have been given the information.
If anyone has information they can point me to in this (although obviously I shall be pursuing my own research and trying to get answers from the hospital) please do send it to me.
By the way since I started writing this this morning I have tried on a number of precautionary hats and bought one. I think from the one that a little hair got caught in which came away without a hint of pain or resistance I can safely say the farewell process has begun, after all. Watch this (widening) space!
Monday 14 December 2009
feeling too well to update the blog!
Mike has told me off for this, pointing out that people would like to know if I'm feeling well as much as if I'm not. Quite right too, sorry. Since Wednesday last week I have been feeling what I can only describe as normal. Like a tangible sensation. The sort of thing that you don't feel ordinarily because it's, well, normal. But that you do feel if you wake up one day after a dragging cold or a week-long stomach bug and think "ah! I feel better" as an actual feeling and keep being reminded of all day.
There are only a couple of exceptions to this, one of which is the wave of tiredness which can suddenly hit but only seems to do when I've really gone for it and used up all stamina reserves. So last Wednesday for example, I was going to post an entry which went "Felt so well I decided to go to Kingston to experience a bit of Christmas atmosphere, which was fun but has pushed me slightly over the edge zzzzzz zzzzz" - but I was too tired!
The other is sensitivity of gums and mouth generally. Mouth ulcers is something they warn you about and I have felt I am right on the edge of them since the chemo. On Friday night I went with Mike for a lovely Christmas meal with one of his work firms and decided to have my one Christmas drink (couldn't resist the glass of fizz which I thoroughly enjoyed) which I think has bitten back by finally delivering two little ulcers. But they're not severe yet so fingers crossed they won't become so. Oh and a few spots which come and go.
Slightly disappointingly though, my arm seems to have stiffened up along the nerve which has become a bit taut and painful again, despite the fact I have only missed one session of exercises since the operation. :-( Hopefully this is not the onset of lymphodoema, which can set in even months after surgery, apparently.
Apart from that I am feeling almost fully energetic. And hairy! so, in Christmas TV classics vernacular, you won't yet be able to see the join! Onwards and upwards.
There are only a couple of exceptions to this, one of which is the wave of tiredness which can suddenly hit but only seems to do when I've really gone for it and used up all stamina reserves. So last Wednesday for example, I was going to post an entry which went "Felt so well I decided to go to Kingston to experience a bit of Christmas atmosphere, which was fun but has pushed me slightly over the edge zzzzzz zzzzz" - but I was too tired!
The other is sensitivity of gums and mouth generally. Mouth ulcers is something they warn you about and I have felt I am right on the edge of them since the chemo. On Friday night I went with Mike for a lovely Christmas meal with one of his work firms and decided to have my one Christmas drink (couldn't resist the glass of fizz which I thoroughly enjoyed) which I think has bitten back by finally delivering two little ulcers. But they're not severe yet so fingers crossed they won't become so. Oh and a few spots which come and go.
Slightly disappointingly though, my arm seems to have stiffened up along the nerve which has become a bit taut and painful again, despite the fact I have only missed one session of exercises since the operation. :-( Hopefully this is not the onset of lymphodoema, which can set in even months after surgery, apparently.
Apart from that I am feeling almost fully energetic. And hairy! so, in Christmas TV classics vernacular, you won't yet be able to see the join! Onwards and upwards.
Monday 7 December 2009
Round One
well I don't really know if I dare say this, so maybe I should change the font to a whisper - so far so good! what I mean is, after throwing up mightily on Wednesday night and once on Thursday morning, things have been really very manageable indeed so far.
I think it's all down to the pills. You have to get on top of it. Having eaten quite happily during the chemo and come back on the bus all smug because I felt ok, I then started to feel nauseous before having taken the next anti-sickness pills - mistake! So for anyone else in that position, it's the same as the pain management - take it before it gets to you is the clue. I then had to suffer the return of many a tasty morsel in a most unpleasant way until bedtime. I slept really quite well overnight and woke up feeling empty-stomached and very happy that way thank you. I took the anti-sickness pills and promptly brought them back, rang the chemo nurse and asked her how I should deal with it if I had to start taking the steroids on a full stomach that day too (which as well as helping with the sickness are there to prevent allergic reactions so do need to be taken). As far as I was concerned, not eating or taking pills of any sort for about the next fortnight seemed a very attractive option, but she warned me against this. The problem, she explained, is that I was treating it like a bug that passes and you think ah, I'll leave my poor stomach alone for 24 hours now and I'll be right as rain tomorrow, but it doesn't happen like that because it's chemo, not a bug, and comes and goes in waves for days. It was a huge counter-intuitive leap of faith to believe her that it was not the anti-sickness pills that were making me sick but the cocktail of poisons that had been injected into me. However that is what you have to do and of course she knows her job and she was right. So the moral of the story, as ever, is suspend what your experience tells you because you ain't never been here before.
Otherwise I have been exceptionally lucky this round so far. My sister Liz came to look after me, coming through the door on Thursday as Mike went out the door having had all the bad bits, and I spent the weekend thoroughly enjoying her company, and the kids who were with me from Friday night, and feeling a total fraud. We even went and enjoyed Pelham school fair. It's weird though because actually, although I'm feeling fine, it wouldn't be true to say I'm feeling normal. You can still feel the faint background nausea and heartburn, a funny buzzingness in the background that is undoubtedly the chemicals floating round your bloodstream wrecking your internal systems along with the good they're doing, and a vague internal crash-helmet bizarrely lining the inside of your skull. It's sort of like a painless invisible pressure that's almost imperceptible. Very hard to describe.
And hallo steroids!! wow! so the anti-sickness pills start to wear off and you take more and feel a bit better, but the steroids do everything you've always suspected they would and you end up redecorating the back bedroom three times in an afternoon before cooking for 12 and servicing the car yourself. Energy or what! Time-limited of course and just another illusion of wellness but boy did they help! Ration ended yesterday :-( but another lesson in why to take your pills as directed - they really helped enormously. (Talking of enormously, the other thing they do of course is to allow you to eat some of the lovely chilli served at the school Xmas fair and think, yes I could tidy up another six portions of that. Not because you're hungry, or want more even though you're not hungry, but because you feel that you can, there is a seven-portion area in your stomach and with a little patient work you could fill it all up. So if you don't see me for a few months be kind when you next do and no I'm not pregnant).
Other than that, sleeping and being very well. The anti-sickness pills run out today so let's hope that's not speaking too soon. I'm not sure whether the hair has started to loosen a bit or whether I've always lost a few like that here and there but I am a little suspicious...thanks to everyone who has said what an improvement my shorter hair is! short-lived perhaps but it gives me ideas for the regrowth.
Right, better start catching up with Christmas - it won't do itself!
I think it's all down to the pills. You have to get on top of it. Having eaten quite happily during the chemo and come back on the bus all smug because I felt ok, I then started to feel nauseous before having taken the next anti-sickness pills - mistake! So for anyone else in that position, it's the same as the pain management - take it before it gets to you is the clue. I then had to suffer the return of many a tasty morsel in a most unpleasant way until bedtime. I slept really quite well overnight and woke up feeling empty-stomached and very happy that way thank you. I took the anti-sickness pills and promptly brought them back, rang the chemo nurse and asked her how I should deal with it if I had to start taking the steroids on a full stomach that day too (which as well as helping with the sickness are there to prevent allergic reactions so do need to be taken). As far as I was concerned, not eating or taking pills of any sort for about the next fortnight seemed a very attractive option, but she warned me against this. The problem, she explained, is that I was treating it like a bug that passes and you think ah, I'll leave my poor stomach alone for 24 hours now and I'll be right as rain tomorrow, but it doesn't happen like that because it's chemo, not a bug, and comes and goes in waves for days. It was a huge counter-intuitive leap of faith to believe her that it was not the anti-sickness pills that were making me sick but the cocktail of poisons that had been injected into me. However that is what you have to do and of course she knows her job and she was right. So the moral of the story, as ever, is suspend what your experience tells you because you ain't never been here before.
Otherwise I have been exceptionally lucky this round so far. My sister Liz came to look after me, coming through the door on Thursday as Mike went out the door having had all the bad bits, and I spent the weekend thoroughly enjoying her company, and the kids who were with me from Friday night, and feeling a total fraud. We even went and enjoyed Pelham school fair. It's weird though because actually, although I'm feeling fine, it wouldn't be true to say I'm feeling normal. You can still feel the faint background nausea and heartburn, a funny buzzingness in the background that is undoubtedly the chemicals floating round your bloodstream wrecking your internal systems along with the good they're doing, and a vague internal crash-helmet bizarrely lining the inside of your skull. It's sort of like a painless invisible pressure that's almost imperceptible. Very hard to describe.
And hallo steroids!! wow! so the anti-sickness pills start to wear off and you take more and feel a bit better, but the steroids do everything you've always suspected they would and you end up redecorating the back bedroom three times in an afternoon before cooking for 12 and servicing the car yourself. Energy or what! Time-limited of course and just another illusion of wellness but boy did they help! Ration ended yesterday :-( but another lesson in why to take your pills as directed - they really helped enormously. (Talking of enormously, the other thing they do of course is to allow you to eat some of the lovely chilli served at the school Xmas fair and think, yes I could tidy up another six portions of that. Not because you're hungry, or want more even though you're not hungry, but because you feel that you can, there is a seven-portion area in your stomach and with a little patient work you could fill it all up. So if you don't see me for a few months be kind when you next do and no I'm not pregnant).
Other than that, sleeping and being very well. The anti-sickness pills run out today so let's hope that's not speaking too soon. I'm not sure whether the hair has started to loosen a bit or whether I've always lost a few like that here and there but I am a little suspicious...thanks to everyone who has said what an improvement my shorter hair is! short-lived perhaps but it gives me ideas for the regrowth.
Right, better start catching up with Christmas - it won't do itself!
Wednesday 2 December 2009
I've got the power!!
Cue dodgy late 80s dancing and human beatbox noises...
Owing to a somewhat anticipated reaction to the first chemo session, Belinda has handed over responsibility to me for tonight's briefing,
First things first, owing to that reaction B may be asleep a lot over the next couple of days and not want to be woken so if you want to check how she is with Liz (her sister who'll be here while I'm in Munich) or me, feel free to phone the home number. Feel free to send texts or leave messages on this site too.
As for today... well, we turned up at 8:20 for an 8:30 scheduled heart echo only to find the Cardiac Investigation room empty. Staff began to arrive without acknowledging us. When B asked what was happening we were told the desk would be staffed from 9am. When she said she'd been told to be there at 8:30 and had arranged childcare there was a flurry of activity and then.... nothing. I went off in search of action while B asked a gowned member of staff what was going on. The reply was rude and improper (words to the effect of "It's not my problem. Don't talk to me like that") but a scan was forthcoming and we got to the Chemo Day Unit in time.
The attitude there couldn't have been more different. Everything was clearly explained by kind and gentle staff. The treatment began just before 11 and was over by about 12. And then we caught the bus home!! And all was well until about 3pm when the effects of the anti-emetic tablets given before the chemo wore off and the feeling of sickness began.
As I write B is lying on the sofa struggling with reactions I can't begin to understand. She's been sick twice and hasn't been able to eat anything yet tonight. Might be down to the snack we had during the chemo....
On a different note, she has asked me to tell you about "What Can I Do to Help?" by Deborah Hutton. Its a fantastic book about dealing with cancer - both for the patient and those who watch and try to help. A big thank you to my friend, Henry Stewart of Happy Computers for the gift...
Signing off
Mike x
Owing to a somewhat anticipated reaction to the first chemo session, Belinda has handed over responsibility to me for tonight's briefing,
First things first, owing to that reaction B may be asleep a lot over the next couple of days and not want to be woken so if you want to check how she is with Liz (her sister who'll be here while I'm in Munich) or me, feel free to phone the home number. Feel free to send texts or leave messages on this site too.
As for today... well, we turned up at 8:20 for an 8:30 scheduled heart echo only to find the Cardiac Investigation room empty. Staff began to arrive without acknowledging us. When B asked what was happening we were told the desk would be staffed from 9am. When she said she'd been told to be there at 8:30 and had arranged childcare there was a flurry of activity and then.... nothing. I went off in search of action while B asked a gowned member of staff what was going on. The reply was rude and improper (words to the effect of "It's not my problem. Don't talk to me like that") but a scan was forthcoming and we got to the Chemo Day Unit in time.
The attitude there couldn't have been more different. Everything was clearly explained by kind and gentle staff. The treatment began just before 11 and was over by about 12. And then we caught the bus home!! And all was well until about 3pm when the effects of the anti-emetic tablets given before the chemo wore off and the feeling of sickness began.
As I write B is lying on the sofa struggling with reactions I can't begin to understand. She's been sick twice and hasn't been able to eat anything yet tonight. Might be down to the snack we had during the chemo....
On a different note, she has asked me to tell you about "What Can I Do to Help?" by Deborah Hutton. Its a fantastic book about dealing with cancer - both for the patient and those who watch and try to help. A big thank you to my friend, Henry Stewart of Happy Computers for the gift...
Signing off
Mike x
Tuesday 1 December 2009
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