Thursday, 1 July 2010

Over and out...

Just for anyone still checking in, I thought I would post one final report before thanking you all and bowing out stage left, hopefully never to need to return to this site again.

Well the burn is now completely healed and the swelling seems to have disappeared, just the sort of mark left that you would expect from an area exposed to sunbathing. The hot water bottle on my back has settled into a pattern of filling up if I overdo things but dispersing the fluid if I take it easy again for a while, so hopefully the threat of further surgery to cure it will fade away. I'm still quite tired and it takes me by surprise how little I can do without wearing myself out but hopefully that will pass - makes me quite impatient! Similarly any little germ seems to stay five times as long, presumably because my immune system's been shot to pieces, but hopefully good eating and not much drinking will eventually reboost things. And keep the cancer at bay (something like 20% increased recurrence risk if you drink even slightly more than the recommended level, or even at the level, I've learned). So that sorts that issue out then! :-) Luckily I've always loved elderflower...

Thank you so much to everyone for your unbelievable support. I think it makes an actual physical and psychological difference to the ability to deal with the treatment to have the level of support that I've had, and my friends taking me to the hospital every day for the radiotherapy turned it from a chore to positively enjoyable - a great chance for me to catch up a bit with what's happening in your lives! I will never forget it or be able to repay it but certainly hope that any of you in need will turn to me first.

Never did wax lyrical (excuse the pun!) about the beauty of hair, did I? Suffice to say that despite always having been a fan and not understanding my female (and some male!) friends hating their bodily hair and the extraordinary lengths and pain people will go to to remove it, I can now say I have never missed anything about my body more! I have a little party for every eyelash, pube and whisker I encounter every morning (and they are coming back!). Nuff said.

Well I'm off. One last positive note - today I received confirmation that I have been accepted onto my Food Policy course at City University for September. Which is nice.

Now then, what was I doing...

Tuesday, 8 June 2010

burn baby burn

Well I am now sporting a massive area of brilliant to dark red, the worst of which is under my arm and "breast" and resembles a birthmark. It is very dry and sore and I am using up the world's supply of aloe vera (having ditched the ghastly paraffin-based aqueous cream that I had to use while the radiotherapy was going on - something to do with the zinc oxide in other creams that heats up under the rays). This means I am very sore and loathe to get too close to anyone on the left side, bend down or move my arm generally too much - just like after the surgery in fact!

FIve stars to the wonderful doctor Julia Murray who has continued to phone me, including before going off on holiday - now that's what I call service. And such a sensible and cost-efficient way of conducting things. The Marsden have truly pulled out all the stops for me - a nice way to round off the main bit of treatment.

Thanks Helen for the lovely (and indeed only!) response to my question about winding down the blog - I think you've understood perfectly what I meant. And you were definitely not someone I thought I might lose touch with!

Saturday, 29 May 2010

radio ga-gone

I was intending to put something on before my last radio appt but didn't quite get time. Anyway that's it, it's over. Now apparently I just sit and watch the burn increase for the next couple of weeks before it starts to recover. A bit like a joint that cooks in its own juices after you take it out of the oven and leave it to rest or, continuing the food analogy, my brother volunteered like something that continues to cook after you take it out of the microwave. Loads of aqueous cream continues to be the order of the day. There may apparently be some scarring that appears on the breast as the implant shows the damage - they reckon there's a surgical response for that in a couple of years time too. All this surgery... think I'll be trying my damndest to avoid as much of that as possible!

I was sent off for a chest x-ray and given antibiotics as this chest infection seems to be making the (extremely extremely helpful and attentive) registrar a bit twitchy. I think I get a follow-up phone call from her next week. I have been nothing but impressed by the Marsden - seriously helpful from beginning to end about everything. Really it's a shame about the nursing and communication failures at St George's - if it weren't for that I'd be truly in awe of the treatment I've received overall.

So I have a follow-up appt mid-July at the Marsden with the radiography team, another with the surgical team in Tooting also mid-July and I'm going to the Breast Cancer Haven in Fulham on Tuesday to start some follow-up and advice. Then it's just mammogram follow-up every year for 5 years from October until I'm into the ordinary screening programme. I'm waiting and seeing what happens with the hot water bottle on my back. Otherwise, er, that's it!

Anyway this raises an interesting philosophical point. Is this the end of the blog? Obviously the end of the treatment is only the beginning of the recovery, as my body has been knocked about, my immune system shot to pieces, and my body hacked around, so it might be of interest to explore how and when these improvements come along. (Ah, look, her first little plait!). Or should I just thank you all so much for your support and bow out gracefully? I feel there should be some sort of exit strategy or it could continue for ever! And of course there's always the risk that people could keep tabs on how I am without ever contacting me directly again - I could become a sort of cyber-person which would not be good. I want to know how you lot are too! I have an excuse for ringing round and catching up with people at the moment as I start to pick up my life again, but there may be some people that I just assume I've lost contact with who've actually been following this and wouldn't feel that they've lost contact with me at all! So I'd be interested to hear what you think. Let me know by comment, phone, e-mail, letter, in person, in code, marked ten pound notes, however you like. My inclination is partly to say, let's close it off shortly and hope I never have the occasion to revisit it. There'll doubtless be a few musings before I stop. What do you think?

Here's a contribution from Lucy:

Hi! I am very glad that Mum's treatment is over, but she still has to recover from the treatment. I cannot wait to put her hair into little bunches or plaits as it grows back! Yaaaaay! Back to you, mum!

From Lucy x

Bye for now, will post again when I have my treatment plan from the Haven.

Thursday, 20 May 2010

shouldn't speak too soon...

I think the big fatigue has hit me, although it might be because of/aided by a threatened cold after Lucy had a snuffle at the weekend, but it's so hard to tell. One of the worst aspects of this treatment, as I think I've mentioned before, is not being able to tell which of the many causes available to me now are responsible for what. Has my foot just fallen off because it's a rare side-effect of the tamoxifen or is it the end of the side-effects of the chemotherapy working their way through? Or is it a completely new disease? Exercising me more is my now very painful back, where the hot water bottle has predictably returned but it all feels a lot worse than it did. Lying awake in some discomfort last night I had one of those rational explanation moments (you know how you do) when I suddenly thought, actually, all this rubbing-in of cream on my back added to the prodding around when the radiographers move me a couple of millimetres on the couch has probably done it no good whatsoever. So I have resolved to tell everyone to be very gentle with me, but I don't know longer-term how this is to get cured.

The tiredness yesterday was of the sleeping for about 13 hours, feeling a bit sick if I stood up for too long type, so I'm beginning to feel a bit fed up of it all now. Funny how being so close to the end can feel like a huge obstacle - I can't help feeling "oh god, six more days of this before I can even start to recover!" I do feel rather like I've been in a car crash. Can't wait to get back swimming; I am so stiff-jointed and my back is so stiff that I resemble an octogenarian when I get out of people's cars back from the hospital - they've started to get parking tickets, it takes me so long.

Still, onwards and continuing, and thanks to all my masseurs and masseuses!

Thursday, 13 May 2010

what happens in that strange room that's out of bounds...

Well yesterday was the half-way mark for this part of the treatment and I haven't found myself in the room with the tissues so far, although the yawning session I embark upon immediately after the treatment continues and I am very very tired now. I put the saving in tissues and tears entirely down to the wonderful support of all of you who have volunteered to take me to hospital each day - you have made it entirely bearable, even enjoyable, and I cannot ever thank you enough, particularly Jackie who organised it despite having her own worries with Harry being still unwell and in hospital after his appendicitis.

There is a hint of a burning sensation and a little bit of warming up and reddening of the skin from time to time but no discernible burn as yet. The kids, Mike, and Karen across the road have very kindly kept me slathered in aqueous cream (such lovely stuff!). My main problem has been with this flipping seroma, which is the cavity in my back into which leaks all the liquid that is still draining from the internal wound where they removed the flap for the reconstruction. This is very irritating! The hot water bottle has returned about three times now since Christmas, which is a shame because it did seem to have settled down initially. If it doesn't settle I have another little op to look forward to - hoorah! Apparently they have to "quilt" the tissue where it should have meshed to heal up and form the scar. That would be in about 3 months once they've given me a chance to recover from the radiotherapy. Will this ever be behind me? Of course it will...

It occurred to me that people really can't have a picture of this radiotherapy thing at all unless they've undergone it themselves so I thought I might attempt to describe it. You go into a huge white room and lie on a bed which has a couple of calipers for you to rest your hands in above your head. Yes it does look like an instrument of torture but it is quite comfortable. Then you have to lie totally still for 20 mins, ignoring the inevitable itches on your nose, face, everywhere (that's quite an interesting endurance test) while they measure you up and exchange details in their unintelligible language (see "14.9 inf, yes I'm good, height supra, 11, in situ? 20 I agree, beautiful" below). They do this with the lights off and funny little green laser lines all over the place. They put a couple of little lines round each of your tattoo points with a marker pen and using a ruler with a sort of compass thing on the end for some of that. They sometimes need to move you just a tiny amount, Wallace and Grommit animation frame-by-frame style, which involves you pretending to be a beached whale (pretending?) while they move you a millimetre or half. Then they put this huge (2 foot square) slab of wax (very heavy) between two sheets of material over your boob and sellotape (yes really) it on, switch the lights on and scurry out. (The wax is to fool the machine into thinking your skin begins about an inch or two higher than it really does, to achieve a ray penetration throught the affected area. Apparently.)The machine itself rotates around you and consists of a flat panel on one end and a huge lamp-looking thing on the other, about 2-3 feet across with what looks like a camera mechanism in it, complete with adjusting shutters and light shining through it. It stays still once they go out of the room, presumably because it's in position. The funny bit is when you see the shadow of your boob on the ceiling with a green laser light through it. I say funny...
I have four gos at this because I am having treatment to both the boob and the supraclavicle (near the neck) lymph nodes, because of the spread to the nodes near the breast. This is the danger area where any recurrence is most likely to stem from.

And the whole painless episode is over in 20 mins and you come back out, change out of the dinky little gown back into your own clothes and get out of the car park before you can say free parking for the first hour. Hope that explained it a bit - hard to describe the weird and wonderful machinery I've met over the last ten months, mainly because it doesn't really look like anything else.

I should just add, by the way, that as well as the mysticism of the talk in theatre, which is a bit like listening to the shipping forecast for all the sense it makes to the layperson, the radiographers are to a (mainly) woman very friendly and completely on the ball about your comfort and the condition of the skin, as well as your state of mind. Didn't mean to make them sound like automatons who only speak radiographese! They are very keen to ensure that things are all right for you and were immediately up with an offer of a second opinion from the Marsden on the seroma if it should prove necessary, which was very reassuring.

One little thought that I have touched on before but which has very much been occurring to me with the last seroma episode, and that is this issue of the boob reconstruction and the implant. I still think, in retrospect, that there is too much attention paid to the look rather than the feel of the thing. This might have made a difference to my decision whether to have the flap from the back or the stomach, as the latter doesn't involve the use of an implant, which is quite hard compared to normal breast tissue (or plain fat which is what comes off the stomach area). Whether it is because there is some healing internally that hasn't happened or just because it's like that I don't know, but it hasn't become something I'm oblivious to as you are with any other part of your body normally if it's not in pain or ecstasy. It sometimes feels like it's a bit too heavy to carry round, and of course the implant is much harder than breast tissue, so does feel like there's something hard and in the way if I lean on it at all or it is under pressure in any way (use your imagination). If somebody had said this, if I'd talked to someone who'd had the stomach flap who said this was not the case for them I might well have made a different choice.

Actually if I'd talked to someone who'd had the stomach flap at the time I might well have been so preoccupied with tests to establish whether I was riddled with the stuff that I would have done no such thing. This is part of the problem - you really are not in the frame of mind before your op to concentrate hugely on whether or not you like this look better than that or whether in a few years time you would like it not to feel like it gets in the way if you turn over in bed at night. You're more bothered about whether in a few years time you'll still be turning over in bed at night. But for anyone reading this who's about to go through it, themselves or because of a relative or friend, I would seriously urge you to try and consider it and bypass the looks part of it a bit. At least ask some questions about comfort and feel. I wouldn't be the good feminist I am if I didn't say it doesn't surprise me at all that there is so much focus on appearance, and I think this is a big shame (though I must pay tribute here to the men and women who have put so much effort into getting us even this far by listening to what women want - time was, not that far back, when no-one put any value even on what someone would look like after such a mutilating process). The way it feels is obviously important for your comfort, but it is also for your feelings towards this now oddified bit of your body, your confidence about how you feel to others and your sexual confidence, not to put to fine a point on it. (Not that there is a point on mine - the possibility of a nipple construction comes much further down the line). And it does make a difference to how carefree you can be in your movements if you think it will limit the enthusiasm with which you hug people (especially less tall people like your children) in case it feels hard, pressured or even a bit painful, or some other movements you make in the exercise of any number of activities (keep that imagination going) like gardening.

But that's not to say I'm ungrateful. I still think what they've done is absolutely amazing, and my experience of the effect the lack of hair had on me makes me certain that not having the reconstruction immediately would have been something I would have deeply regretted and suffered from. (I'll deal with lack of hair - all types of hair - another time very soon. Well, I'm getting used to this frankness lark, and I know at least some of you are lapping it up!)

Better go, nearly time for the daily appointment with the wax tablet.

Tuesday, 4 May 2010

sorry it's been so long...

There's something about radiotherapy appointments every single day that punches a hole in the time available to do things. But I should have reported sooner really...

Anyway this is (so far) infinitely preferable to chemo. I have not really had any effects from it at all yet, although I can begin to feel the burn approaching... just smear on lots of aqueous cream (yuk! the only thing they let you use cos it hasn't got any metals in it which is important apparently. The fact that it's entirely made of paraffin and therefore petroleum-based is something I'm just pretending isn't true. Find it easier that way).

I am dog tired generally but even that comes and goes. And part of that is still tiredness from the chemo which does knock you for six. They have told me that I will be exhausted by the end of it for certain. The funny thing is that the only time I have really felt tired so far has been in the car on the way back a couple of times last week - my wonderful friends who are being so kind and taking me in to the Marsden on a rota drawn up by Jackie have therefore been subjected to hippo-style yawning in response to their conversation. Absolutely no reflection of my level of interest in what they're saying, I assure you, in fact I'm sure it's the enjoyment of everyone's company in this way that is keeping me quite cheery about the whole thing. I decided the best way to deal with it being every single weekday is to think of it as going to work (let's face it it's about as much fun as my job became! In fact that's probably unfair to the Marsden as it's painless and only 20 minutes each day). And it is quite amusing observing the radiotherapy team (mainly women). Their conversation goes something like this, (although the detail of what follows probably bears no relation to what they really say or to radiography in general):
"11.4. Your side?" "Yes" " About 3 linear". "I've got 14 and a half" " That looks really lovely." "Up 2". " Yes that's not too bad on there".
Then they suddenly all scurry out looking for all the world like they're practising for the Olympic walking race events and switch all the lights on on their way. They put a huge 2'x2' lump of solidified wax on the boob which gets held on with sellotape (they've been told to make economies) just before they leave. Then the machine makes its "I'm a machine that's whining like this because I'm about to break/stuck in a ditch" noise for a few minutes, then they all scurry back in again at maximum walking speed. I have four of these and after 20 mins it's "bye-bye see you tomorrow". Piece of cake. (Yes I know I shouldn't say that and will suddenly have all sorts of horrible things happen now. One of the very rare side-effects is that you get a broken collarbone. Hoping to give that one a miss. There are some other rather horrible very rare side-effects and some that may kick in months or even years after it's all over but I can't be bothered to think about those).

I still have the painful heels from the chemo and the funny fingernails although they're considerably less painful than they were, which is nice, but still a bit numb which means I'm still dropping more things than I normally do, which is not nice. My taste buds are almost back to normal (THE most important thing) and my hair is growing back green (in time for election day maybe?). I suspect it may be the Tamoxifen but I am a bit achey when I stretch out my limbs. Unfortunately it becomes difficult to know which side-effect to attribute to which part of the treatment after a while - they all overlap. In addition the fact that the chemo can bring on the menopause prematurely (which it seems it may have done) means that you then have all the symptoms of the menopause to contend with as well, although they may be due to the menopause or the other parts of the treatment as they all overlap. Bit like the last two sentences really. The bottom line is things will never be the same again...

One final word about recovery. There is an understandable wish on the part of supporters of people who go through this sort of thing to hear that it's all over and everything is back to normal. In fact it is nothing like that and never will be with cancer. The end of the treatment is the end of nasty things being done to your body that are risky themselves to beat an even bigger risk to your life, and you come out of it a bit like a wrung-out rag. I feel and doubtless look a lot better than this would imply, but there will have been damage and disproportionate ageing to various bits of me. The follow-up sounds really quite minimalistic, and as I've referred to before on this blog, they don't give you an all-clear as such. You have had surgery to remove the obvious tumours, chemo to catch and destroy any floating cells that can't be detected on scans, and radio to kill any cells in the area of the tumour. It's at the most devastating scale that your body can withstand and hopefully it will do the trick. The follow-up basically is a mammogram for the next 5 years on the other breast (then you're into the usual screening programme) and the rest is down to you to report anything you think is not right. The bumph says that numerous trials have shown that any greater followup does not produce any greater rate of detection of recurrence. The "prognosis" they give is usually talked about in terms of survival/years, but they can't say any one person will live for another 3 weeks or another 30 years - it all depends on whether it comes back, and if it does there aint nothing you can do about it except get it treated again. So I'm rather hoping people won't ask me that question any more, because I can't really give a satisfactory answer and it's not that I'm being evasive or lying or hiding from the truth - it just really is like that with cancer. No news is good news because there is no guarantee, any more than there is any guarantee that any of you without cancer will never have cancer.

And on that sunny note, I wish you a cheerful good evening!

Wednesday, 21 April 2010

a strange way of booking...

Well yesterday I was told, on ringing the Marsden, that they absolutely could not tell me any of my appointment times for the coming treatment until I go there on Friday for the first one (they were kind enough to give me a time for that one). The woman I spoke to explained that if they do it like this for everyone it works out fairer in the long run. That old first-come-first-serve treatment that some people delude themselves is fair rears its ugly head once again (although why this wouldn't mean my appointments were sorted out weeks ago I'm not sure). How, I asked politely, can it be that if you treat people the same you end up treating everyone fairly? Take someone who might have no schooltimes to work round, no work commitments (as I currently don't for example), and has a partner with a car who equally has no commitments. Couldn't that person actually be more flexible than someone on, say, hospital transport, or with work commitments that are urgent, or with childrens' schooltimes, or an elderly relative to look after who might have appointments of their own to be taken to, or who don't have a car or anyone to take them? (Or in my case who would simply like to repay the kindness of those of you who have agreed to give me a lift on some days by letting you know so that you don't have to blank out entire mornings in your diaries). Shouldn't the people with the least flexibility be given their appointments first?

The woman I spoke to didn't think so and point-blank refused to give me any times at all. It can't be the same woman I've just this minute spoken to (you didn't think I wouldn't phone back the next day with the same polite enquiry did you??!) who has just very kindly given them to me for Monday Tuesday and Wednesday without any fuss at all.

What a strange way of carrying on...

Sunday, 18 April 2010

and on to round 3

Had a lovely recuperative little break up in Constable country, although my body rebelled a bit against too much normality towards the end, but we did manage a 6-mile walk on one day. All had me feeling totally refreshed but unfortunately these effects remain somewhat transitory at the mo and I am now feeling pretty wiped out again after short bursts of energy. The main bugbears are this dreadful fingers-trapped-in-car-door thing which seems to have reached its zenith after this last chemo and continues to hamper my efforts in many annoying little ways (very painful to put any pressure on them - and on the toes too) and the sudden collapse in energy levels (and corresponding dip in spirits which leaves me a bit depressed sometimes). My eyebrows seem to be dropping out with a vengeance now so very little left - if you come across me and I look totally disinterested in everything you're saying, I'm not, I promise. I will try and compensate with some manic mouth-twitching or head-shaking. My tastebuds are not yet fully back to normal yet although they're getting there. There is some hair on my head but it's not the "baby hair" I was told would come first and then fall out ahead of the real hair - more like stuff that's been singed by getting too near to volcanic ash. Still, I'm sure it knows what it's doing.

Poor Mike is getting no letup it would seem. On the last couple of days away we discovered that one of his step-daughters Isla (29) has been diagnosed with lymphoma. All the precise details are not clear yet but she is undergoing the usual battery of tests to find out type, degree, spread etc. Really horrible for Mike, Oli (who has his A-levels coming up) and most of all Mike's ex-wife of course. Seems to be bloody everywhere at the moment.

The radiotherapy scan on the 12th was fine (apart from the fact it was my first ever visit to Sutton and the road I needed was closed without a single diversion sign to tell me where to go. Such fun! Road signs telling you the actual name of the road seem to be a thing of the past too - why is that?). Anyway they marked me up with where they want to fire at me so I now have 4 tiny tattoos on my torso. Radio starts this Friday 23rd - thanks to Jackie for getting people together to shuttle me back and forth, it really is so appreciated. I have driven around a little bit this week enjoying people's hospitality (thanks to Gill and Rog who may not have got away to China for five weeks and to Vivienne, Mary, Bernadette and gorgeous little James - it was lovely to see you all) and I think it has worsened the finger-end situation somewhat. So I probably wouldn't have been that keen on driving myself there and back. I have heard a variety of reports on the effects of the radiotherapy ranging across the whole tiredness spectrum from total wipeout to am I bovvered, so who knows where on that spectrum I shall fall. The most obvious other effect is burning to the area irradiated so presumably I shall become a little less capable over the five weeks and a while beyond. More cooking for the kids to do and salads the rest of the week I reckon!

And talking of the kids, Lucy has asked to put her own contribution on here so may I present my firstborn, Lucy Harris!:

Thanks Mum!! I asked to contribute to this blog because I thought it would be good to type about my views and thoughts, aswell as my mum. I have found the whole situation very strange and sometimes quite hard to deal with. But I really appreciate the help from everyone, espesially Mike, as it has really helped Mum, Gabriel and me, and I would like to say thank you for everything everyone has done. Due to all the help, I am not worried or upset about anything going on, and if I was then I would feel able to talk about it to Mum, Mike or Dad (or even Gabriel). We are able to talk about everything going on so openly to eachother, and I think that really helps. Mum told us recently that before she told us she had Cancer, she was planning not to tell us until we had settled down in our Dad's new house, but I am glad she didn't, because I think I would have known she was keeping something from us (and going to the hospital a lot!). I am also happy that, on this blog, she is able to joke about everything. I will be reading parts of this blog (if my mum allows me!) because I think I will find it very interesting to know how she feels about everything that is going on. I will also (again, if my mum allows me!) be writing more on this blog. Thanks again for all your help! :-)
Lucy x

Back to you, Mum!

That's all for now folks - there's sunshine to make the most of!

Tuesday, 30 March 2010

Step 3...

The end of the chemo session on the Wednesday itself left me very cheerful, slightly beginning to feel shock at the enormity of what's happened to me and, as before with the T treatment, perfectly ok for the first couple of days (with the exception of the sporadic tiredness being more immediate and extreme than before). However come the weekend I had the most intense chemo-head feeling, twitchy fatigue, extreme deep cough and pain in the bronchial area that any of the three T treatments has so far brought. This has lasted pretty well till today when it is beginning to calm down a little. The painkiller situation was not too bad again however, only needed a couple of ibuprofen. The worst aspects this time I think have been the emotional kickback and the feeling at the most exhausted times that I'm on the verge of a heart attack (who knows, perhaps I was, these are heavy-duty chemicals!).

The emotional is partly because the end of the treatment leaves you with this funny feeling that you're no longer doing something helpful, you've stopped, isn't that risky? But largely for me it's the realisation that no matter how supportive some people are through these things, you're not really anyone's specific responsibility, which with the best will in the world can make you feel terribly insecure, particularly as it unquestionably involves facing your own mortality far more directly than people without an illness will be doing at this age (or even much older!). Add in a few toxic chemicals and all sorts of horrible feelings creep out of the woodwork. (Mike, as prime carer-for-me has not necessarily had a very easy time of it this last few weeks and probably could do with some support too). No doubt the radiotherapy will replace that feeling of not doing anything to counter the cancer, but once that ends I really will feel it I imagine. Just have to focus on getting some sort of normality back I guess, and popping the Tamoxifen.

With characteristic excellence at communication nobody warned me that I should be available for any specific dates for my radiotherapy planning. So they put the date on one of the days that we're away (despite actually knowing this was a date we were away) and had to be asked to re-arrange it which has a knock-on delay on the radiotherapy itself. I decided I would chase this re-arrangement even if that meant I was being a pain rather than wait any longer for them to get back to me and got an answerphone message saying the woman re-organising it was now on leave until mid-April and there would be nobody checking these messages. How cool is that! So I eventually got someone else through the switchboard who kindly arranged for my planning CT scan to be at 10am on the 12th April and even more kindly booked the radiotherapy itself to start the day after my birthday, so at least I won't have to do it on my birthday! It will be every day for five weeks which means Fri 23rd, 26th-30th, May 4th-7th missing the Bank Hol Mon, 10th-14th, 17th-21st and 24th-28th, ending neatly just before the Bank Holiday weekend and half-term week (though the children will be spending most of the half-term with John).

Going to the latest SFO exodus party for the early part of the evening tomorrow so may see some readers there... Meanwhile thank you to Lisa (Matt and Ellie's mum), who very kindly re-iterated her offer of help, gave the children an Easter egg each and me a copy of Good Housekeeping! It may be the chemicals but I burst into tears! So kind. Have a good Easter everyone. I'm hoping to have a break from posting for a little while but will check in to see if anyone is commenting.

Tuesday, 23 March 2010

last chemo

Well I've just heard that my blood count is fine (rather better than on previous occasions in fact, probably due to all the extra stuff they pumped into me during my stay in hospital) so the last chemo is going ahead tomorrow. My mood finally lifted a bit at about midday yesterday, and it really did feel quite specifically like that time, so whether there's a bit of a chemical/hormonal influence going on, or whether it was to do with telling the consultant everything that was wrong with my stay in hospital followed by dissolving into tears on her in the morning I don't know. (Don't worry, they were assertive tears, not wussy ones). However I could feel a bit of extra energy coming back in (again almost chemically) and pulled off the best roast pork dinner (postponed from Sunday cos Gabriel was a bit unwell so had to be dumped on his poor dad at short notice) I've managed in a long time. Organic pork and locally scrumped apples see. Does the trick.

So now it's the recovery from this one to get through, hopefully without getting any infection this time. I'm beginning to get the side-effect of the nerve endings in fingers and toes becoming painful, which is currently only showing as blood under the fingernails (yuk - some people have their nails split all the way down or come off altogether which sounds incredibly painful and hard to deal with). I'm hoping mine doesn't develop to that after this chemo. At the moment it looks and feels as though I've slammed a car door on my fingers which makes it really hard to handle things, open packets, pull washing out of the machine etc (enter kids stage left). Not sure how you operate at all once they split or come off - must be like chewing steak with a mouthful of baby teeth that are all wobbly and about to come out. Presumably you just don't.

In order to safeguard my few days away in Essex with Mike I shall be avoiding all possible routes of infection for the next couple of weeks until I'm sure I'm back up to normal blood count - please don't anyone be offended if that means my cancelling at short notice for something that might normally seem trivial.

So that'll be that. On to the radiotherapy. Let's hope I don't have to go through chemo again, or not for many years if I do - can't say I'll miss it.

Monday, 22 March 2010

hoping for the last time

Haven't really managed to shake the depression that that stay in hospital provoked - don't seem to be able to rise above it all. Hopefully the spring weather will lift my spirits over the next few days (don't tell me, snow is forecast?)

Off to my pre-chemo appt which I hope will show my blood count is high enough to have the final chemo on Wednesday. If not it slips by a week, as does my state of mind :-(

Thursday, 18 March 2010

Split ends and horror stories - plus radiotherapy to come

Would you believe it, I have a fluffy spattering of hair growing back to about 1/8 inch and already I've got a split end.

Well that stay in hospital was a real blow to my confidence and I have only just felt able to put anything here about it. 5 hours waiting to get to the ward which was completely unnecessary as Mike has described. I was then woken during the night to be asked by a doctor what medication I had been given (I explained my last qualification was legal not medical) because they had no idea where my drugs chart was. The next time I was woken was to be asked which blood samples had been taken because they had no trace of one I should have had on their record. Was one of them a large bottle? What's large?!


To add to my sleep happiness we also had the seemingly complulsory wanderer - a man this time but at least he had a full-time minder and didn't scream psychotically at any point or stand at the end of my bed.

I was told that they needed to measure the fluids in and out (as I was on intravenous antibiotics) so they gave me an elegant plastic jug to wee into. I had no objection to this, other than that with visitors coming, it isn't the most pleasant sight/aroma to behold near my bed, so when it was continuously left there (and one may deduce therefore not actually being measured at all) I took it up to them at the desk, until they told me that I could have a label to put on the jug and could just leave it in the toilet where it would be collected and measured. So I duly filled it up over the next three occasions until it was full, gave up chasing it and just went to the toilet as normal, each time looking at this jug on the windowsill in the toilet until I left on Saturday. It could well still be there (it had been joined by another that had filled up and was just sitting there too).

They left my notes at the bottom of my bed at one point which I rather stupidly said I would occupy myself by reading in the presence of one of the nurses. She snatched them off me and said I wasn't allowed to look at them because they sometimes had things in that the doctor didn't want patients to see (!) and that I could apply to see them. I explained that applying didn't mean you could be turned down, it meant an institution could charge you for the cost of copying your notes to you, but that cut no ice with her and she duly took them up to the desk where they lay overnight for any bugger to look at (but not me, obviously, that's not allowed). Several unsuccessful attempts to nick them back overnight concluded in triumph the next morning when no-one was looking (practice at flashing what used to be my boob for all those years really paid off for that sleight of hand cos I was surrounded by staff). The notes were full of inaccuracies. Some examples: next of kin Mike (wrong), temp on arrival 39C (wrong) tumour 60mm (wrong) "lives with partner" (WRONG - this example is worrying as clinical decisions like whether someone is safe to go home can be made in the future on the basis of misinformation like this. Where on earth did they get this stuff from - do they just put what they presume?).

On Friday night one of my two lovely ward-mates was to be moved to another ward and half-jokily said it would of course be in the middle of the night, not at a civilised hour. How right she was! (1.15am and one of the staff cleaning the bed switched the telly on to watch it while his working partner went to get something. He switched it off again pretty quickly though...!) Meanwhile a lovely woman probably in her mid-late sixties was sitting in the day room earlier on when I went to watch The Bubble on telly, in her nightgear waiting to move into the vacated bed. She had been told it might take an hour but that was at 9.30. No-one came and checked on her in the meantime and nobody had even made her a cup of tea. I know they're busy, but they could at the very least have shown her where the tea trolley was to make her own. So I made her a cup of tea, found her a newspaper and checked in on her a couple of times until she arrived in our ward.

My other ward-mate , who had secondary cancer that had spread to the bones, had great difficulty lying on her back and they desperately needed to do an MRI scan to analyse what was in the spine causing compression. After she had returned from it having been in such pain she was unable to lie in it for long enough to get a proper series of images, the doctor expressed surprise they hadn't sedated her or given her localised painkillers to enable the scan to be completed. She said the guy doing the scan had said the same. Rocket science?! These scans cost a fortune and that one was wasted for what looks like no intelligent reason. Needless to say she had to do it again on the Monday - but had to spend the weekend in hospital, missing Mother's Day at home. There were similar stories with anti-emetics and anti-constipation drugs just not being offered until far too late, causing unnecessary suffering to patients who didn't realise something could be done to alleviate it. A checklist for the doctors perhaps?

So you can imagine that on the Saturday when I was to be allowed out I was straining at the bit. I had my last intravenous antibiotic and my ricicles, had packed my case, and said to the nurse would now be a sensible time to get showered as I wasn't awaiting the drugs round and she said yes. I returned to find my two ward-mates sitting in the day room while the ward (where of course all my clothes and effects were) was being intensively cleaned for an hour and a half and all the bed curtains had been taken down. (Entertainingly my ward-mates had been asked to sign a disclaimer to say they understood the hospital was not responsible for loss of their belongings just before the contractors came in to do this clean, but we didn't realise that until after. Why would you sign a disclaimer without getting any benefit in return? So I advised them not to (one of them was falling asleep with exhaustion when she was being asked to sign!) - I certainly wasn't asked to sign anything and wouldn't have done). I'm afraid I had a go at the nurse about the clean. What on earth prevents them from warning you that you will be unable to use the ward for an hour and a half at some stage so plan your toilette/exercises/anything else individual patients are supposed to do during the day? This is not a matter of resources or efficiency or, I suspect, St George's particularly for that matter - it's a matter of courtesy and communication and not treating patients like stuffed cushions who are merely passive recipients of clinical treatment. Something about the care side of nursing and medical care has gone horribly and deeply wrong in the NHS and something desperately needs to happen about it. No-one else who is a patient with me has expressed any surprise or had anything but similar stories to tell, and these are not people who are just moaning, being negative or giving an unbalanced view. Everyone is pretty much in agreement that there are some super nurses (the overwhelming majority of them in fact) and on that level I didn't have a bad time at all. Yet somehow this appallingly neglectful attitude undercuts anything good because it is a systemic failure to give proper care, and I really don't understand it. It's something that no individual is responsible for because... no individual appears to be responsible for it. They need to involve patients properly in their care, even if it's to explain how their own system may be going wrong or inefficient - most people don't mind as long as they understand what's happening (or not happening). It's awful, and I came away more depressed than at any point since they were investigating whether it had spread back in August/September. And because I have seen people who now have secondary cancer after 5 or 6 years of the primary cancer, I have seen this treatment of them and I think of whether I will be in this position if it comes back and it has left me very, very upset and frightened.

Just to prove I'm not all negative - there was a very nice lamb "korma" which blew me head off and certainly wasn't a korma but was delicious (yes I mean that word) and a very nice breaded haddock and mushy peas. The showers and whole ward was very clean and constantly being cleaned. The nurses were all pleasant as I have said, as were the doctors. But although we may have lost the "how are we today dear?" brand of nursing, there is still a huge amount to be corrected on comunication, both to patients and between staff groups, who, to be fair, also suffer from the diabolical lack of joined-upness (and it is the good nurses who I think suffer from this the most, apart from the patients). Very depressing.

I have also heard from a fellow patient who suffered the same (frankly cruel) treatment as me in the recovery ward, including her husband not being contacted after being told she had arrived on the recovery ward, for hours, and phoning in to be put through to ward after ward because they couldn't track her down (she was still suffering on the recovery ward but, as they insisted to me, it's not routine to phone out to people from there). I have discovered the means to complain about all this and will be doing so, because so many of these things are happening to people who are either frail, old, vulnerable, or in pain, or several of these - or may be in the future, including me.

Yesterday I was back at hospital to see the radiography consultant - thanks Janet for coming with me and helping to turn it into more of a day out! I will be having radiotherapy every weekday (except bank hols) for five weeks and, assuming the last chemo next Wednesday doesn't slip, should be starting on the 19th April I believe. It will be at Royal Marsden, Sutton and Jackie has very kindly offered to set up a transport rota for days that either I or Mike won't be able to cover. There will be a scan beforehand for them to mark me up too. So by my calculations that should make the last session Monday 24th May, all being well. Then I can get back to my lapdancing career.

Thursday, 11 March 2010

Free texts and minutes?

No, not an advert... A plea!

If you have any of the above, Belinda would love you to make use of them and contact her tomorrow as she's a bit bored!

Update: Temp still up, blood count low. Antibiotics flowing freely. Tis possible she'll be discharged on Saturday - just in time for Mothers Day at home with the kids.

It's possible that the final chemo session may be delayed for a week, buggering up our scheduled post-Easter break in rural Essex spectacularly :o(

Go on, give her a call... You know you want to!


Why him? I hear you ask.
And what sort of time is that to be posting on her blog? You might also be asking....

Well, listen up and all will become clear.

At about 3:50 pm on Wednesday, B decided to take her temperature as she felt a bit flushed. The benchmark is 37 C. It was high. It was high the time after that and the time after that too.

That's bad cos it means there is a risk of infection and she may need lots of intravenous antibiotics in a protected environment.

She rang the Oncology team at St Georges who said "Come in to A&E. Wave your "I'm a chemo queen" discount card and you'll be fast tracked". I met her at 5:50 at A&E (I'm doing a short contract at St Georges) and sure enough she was triaged, cubicled and seen by the Oncology SHO pretty quickly. They said (eventually) that she'd have to stay in - and got her started on IV antibiotics.

The trouble was it was 9:45 before they decided to move her to a ward. Nearly three hours in with the coughs, sneezes, vomiting masses. When we got the ward, the bed manager had not specified a side ward even though she was suspected of having an infection and needing extra protection.

The Bed Manager was challenged (brilliantly) by a staff nurse but said the 2 (apparently free) side wards were needed so B was wheeled back to A&E where we sat, she getting hotter and hotter and more and more irritated - and then angry - before they finally moved her to a bed they'd known about for about an hour (wait for it) ON THE ONCOLOGY WARD!!! I left her at 11:40 finally receiving the care her condition was supposed to ensure comes as a priority.

I am (and I hate to say this) absolutely fuming at the incompetence. The process was totally inadequate and inept - and when I get in tomorrow I'm emailing my thoughts to the Chief Executive cos I've had enough.

M'off now. More tomorrow :o(

Tuesday, 9 March 2010

nearly all better

Well it's been better this time than last in some ways - I took only one set of anti-sickness pills and haven't had to resort to painkillers at all, having had the same twitchy pains in much smaller measure than the last time. What has been worse is the tiredness which is really becoming more noticeable now - a trip to Wimbledon for a wee bit of nothing to get really left me having to take a breather on the sofa for a good 10 mins when I got back.

The real nuisance this time has been what I think I've seen described elsewhere as "chemo-brain" - that bizarre restless churning over of endless thought processes. It's a bit like a fever in a way, in that it's not just normal trains of thought but almost mathematical or scientific programs running - the brain thinking that happens because of that, and that follows, and maybe that's why this happens and .... on and on and on, awake and asleep. The only thing that rescues it from being awful is that you're so immersed in it, like Alice in Wonderland meeting each morph of reality, that you're not objectively aware of it torturing you, you're actually having those conversations with your brain. So it doesn't really feel like something to suffer until you're beginning to come out of one of the spells and you think please, stop thinking! Give me a rest!

Of course the other person it does feel like suffering to is probably Mike, my constant loving support, and anyone like Emma who's had any kind of conversation with me over the last few days - if I sounded weird I'm sorry, I was trying to keep it real! Very very odd indeed, and like so much about this experience, it has made me think a lot about what it must be like for people who suffer these things as permanent disabilities or conditions that they live through all the time. Bloody awful, don't know how they do it. She said, completely assuming that these things will be going away once the chemo has finished when in fact there is a chance they can reverberate for a number of months or even years afterwards. Let's hope not.

Saturday, 6 March 2010

waiting for the hit...

Once again, so far so good, and it's Saturday so I'm doing better than last time. Feel totally spaced however and have been doing a quarter of the nil I was doing last time round which may account for the improvement. Am just hoping it doesn't kick in as big time as before. The bluesy feeling has already started but I'll just counter that by going clubbing.

Nothing more to add - you feeling as bored by this as me?

Tuesday, 2 March 2010

No 5 looms...

Tomorrow's the day for number 5, which needless to say after last time I am not looking forward to at all. Oh well, resign myself to a possible good couple of days before it all kicks in.

I also now have my appt for March 17th with the radiotherapist, when I shall learn the joys of what's in store for the latter half of April and most of May. Sure it can't be as bad as the chemo - really can't wait for that to be over.

I so want my body back!

Tuesday, 23 February 2010

feeling better at last

It's taken more like a week and a half to recover from this one so that only leaves this week and a half to get things a bit sorted out, which really makes a difference (sub-text: the place is a tip). Doesn't fill me with anything but foreboding for the next one but at least when I've done that I can treat myself to the thought that there's only one after that and then it's over. (Pinning a lot on the radio not being so bad - foolish?)

Got my Open Uni 10-pt course (Human Nutrition) through the post so starting on that this week. For some reason it's making me feel like a kid with a new toy, I'm so excited. Are my horizons shrinking or am I finding a new lease of life? One annoying thing - as I am on Employment Support Allowance, the course is paid for by the OU, even though it's contributions-based not income-based benefit (interestingly it's different in Scotland, which seems a tad unfair!). Did they tell me at the Jobcentre about this wonderful training opportunity (and hundreds of thousands of other people)? Never mentioned it. WHY NOT? If they are so keen to get people back into work, particularly people like me who can't look for work at the moment but are still able to read a bit, wouldn't it be a good thing for people to be able to get some skills and show a future employer they have done something whilst out of work without having to lay out money to do it? I shall write in...

Anyway, study calls..

Monday, 15 February 2010

oak, ash, hazel, hawthorn and willow.

Those are the woods with protective powers and therefore the ones to touch. Clearly I was communing with MDF as I have, since the last rather optimistic entry, felt like I have been beaten up and am suffering from various organ failures. There is the unpleasant throbbing stabbing pain in the small of my back which I can't seem to find a position to get away from, in my lungs and in my back where the scar is, the Lanzarote landscape of ulcers in my mouth, the busting high blood-pressure head and the feeling that the pains are not so much flu-like that you can sleep through, more like being accidentally drafted into the percussion section of an orchestra where the musicians mistake your feet and ankles for their glockenspiel and keep hitting them. With flu you crawl into bed and sleep your way out of the aches and pains. This is so uncomfortable that you have to keep twitching away from the jabs and can't find a position to fall (and stay) asleep in. To quote Patsy in AbFab (which I have revisited recently) "I'm not happy".

The only way out of this has been to dose myself to the hilt with painkillers, so I don't feel as bad today. Not nice though, as you can feel this strange sensation of where the pain really is underneath the fug. I'm hoping this will wear off soon but will check with the chemo nurse this afternoon. :-( Not sure how I'm going to deal with eight more weeks of this if it's going to be unrelenting.

Other than that the kids and I are having a smashing week being exceptionally lazy and doing nought (they're out with Jennifer at the moment so they will expend some energy). We spent all day Tuesday lounging around watching the afore-mentioned AbFab and eating nothing but pancakes. Lucy didn't even manage to get out of her pyjamas. And as they went shopping on their own on Monday for our dinner and keep bringing me cups of tea I continue to feel very well looked after.

Thursday, 11 February 2010

PS for the day - part 1" update on the chemo" below!.

As an addendum to today's entry below, my brain appears to be working better at the mo as well, as I've realised I have been remiss in not thanking Emma (Meads) so much for taking personal responsibility for my falling-apart oven and getting the very kindly Garth who does kitchens to come round with her and them both to struggle with my grease-laden door and ancient super-glue to do a quick fix and allow catering in the household to continue! So for that and for all the other stuff you've looked after me with Emma thank you, you are a star and I'll source the best ginger cake for you I can find!

I also forgot to add on a hospital-based note that another of the classic indicators of failure of communication in the hospital is the red dot. They put this on your blood test form to indicate that you are a priority and can queue-jump because they don't want you hanging around where you could pick up nasty infections when you're on chemo. I have now met at least three other patients (and I was one myself until I noticed other people doing it) who have duly taken their number and waited for hours in amongst everyone else not realising they should stand at the door and go ahead of everyone. Furthermore they don't have a notice up anywhere explaining to the people with numbers that some people may legitimately be seen first (there wouldn't need to be anything on the notice saying why so I can't understand why they don't) so you get looked at daggers. All very preventable. So for anyone in this position - don't forget to ask for your red dot when given the blood test form at hospital or by your GP so that you don't have to hang around!

Meanwhile Anne (Thornton) if you're reading this could you please let me have the number of your friend who I was going to approach for this letter to the PLAS again as I can't find it - I haven't forgotten and still intend to write - you still willing to join in?

get the FEC behind me and bring me some T!

Well it's absurdly early to be posting something on the blog but Mike is getting a new bed delivered (hoorah!) between 10 and 12 so this one has had to be vacated ready. Do I mind this because I'm aching with flu-like symptoms and wiped out with tiredness? Bring hither the wood for me to touch - I feel absolutely fine and normal. Much better than on the FEC. Can it possibly last? That's what the wood is for. And bizarrely rather than feeling tired I was wide awake in the middle of the night for about two hours (not in a fretful way, just thinking time) but I'm not feeling sleep-deprived this morning either.

The only sign of anything is in my hips. When I was a student (and even a few times after that) there'd be stupid parties where I'd end up sleeping on the floor or in the back of my mini and wake up feeling like somebody had drilled a hole through my hips from the outside (no lewd thoughts required or remotely justified unfortunately) - I feel a tiny bit like that. But it could just be Mike's old bed I suppose... Don't know whether it's the steroids helping me (yes they're still around so I'm still a round for a while longer I guess) that I'm taking a higher dose of now and have to start the day before the treatment. The T treatment itself is a lot easier because it's just one drip for about an hour and a quarter in the company of a good book (food-related of course - terrifying stuff called The Omnivore's Dilemma" by Michael Pollan, rush out and buy), so that was all very comfortable.

And Mike's loving care and attention of course...

So all those of you who have been threatening me with lunch or even something more exotic (Biker, Catharine and Bernie, Louis), get yer diaries out and unless things take a downturn, I'm stepping out for the next three weeks!

Just a note quickly about the comments instructions - there is no need to worry about having to set up your own googlemail account as Mike set one up from the blog for you to use. I know one or two of you were bothered about that but it can all come from off this site and not from your e-mail address at all.

(I'm not going to talk about nostril hairs at this point, it would only spoil an otherwise optimistic entry! Perhaps I needn't even elaborate...)

Friday, 5 February 2010

go on, give it another go!

It was so nice to get a comment yesterday from someone who has only just got the blog address - it reminded me that people are still reading this. But it does feel a bit like talking to a vacuum when you don't get any feedback which has sometimes (you may have noticed!) made me feel a bit less encouragavised to post anything, for which I have in turn been chastised! so for those it has so far defeated, I am re-posting the steps to follow. Just in case any of you are tempted to stare defeat in the face and proclaim "NO! I shall make this work"!

Going to Cannizaro with Karen and Helen today which judging by the beautiful weather will be lovely. Trying to ignore that Wednesday looms...and refrain from scratching my now spot-covered blotchy face. I can't work out (as with so many of these things) whether it is a swarm of tiny little midge things that seem to have infected one of my favourite plants and taken a fancy to me (biting things have always been more attracted to me than rich femninist men) or another effect of the chemo (it's not on the list I don't think). Whichever it is I could scratch my face off at the mo - very irritating. Witchhazel here I come.

Here goes:

• Click on the comments link under the blog entry (the one that says number comments after Posted by Belinda’s updates at time)
• Type your comment into the box entitled Post your comment. Don’t forget to put your name as otherwise it will come up as anonymous.
• When you're ready to post, select Google Account from the dropdown list next to Comment as:
• Press Post Comment
• For some reason it seems then to come up with Your request could not be processed. Please try again. So press Post Comment again.
• When the login screen comes up, type in the email box and belinda1 in the password. Do not tick stay signed in. Press the Sign in tab
• Fill in the word verification as requested and press the Post Comment tab.
• Remember to click on Sign out when the next blank Post comment screen comes up again.

Ah gowon. Gowon, gowon, gowon, gowon, gowon, gowon, gowon!

Monday, 1 February 2010

wearing down but bearing up

I'm in that lovely midway patch between chemo sessions when I feel relatively unencumbered by all the side-effects of it but not too close to the next one to be dreading it yet. Which meant that I could thoroughly enjoy Saturday evening celebrating Liz's 60th birthday, together with a glass and a half of wine and a glass of champagne which had no obvious adverse effect on me whatsoever. Which is nice.

Although the snow overnight is very pretty it has slightly put paid to my fantasy of doing a bit of gardening (well that's exercise I can get without having to worry about what's on my head and whether it will fall off - if it does there's only the builders next door to see it, and I'm better looking than all but one of them without my headgear anyway). I am beginning to notice (and be a little worn down by) some of the permanent features of being poisoned, like a slightly vacant expression which I have realised is because my eyelashes have almost completely run away without my noticing and my eyebrows have started to thin. So if you think I'm turning into AmIbovvered when you talk to me, it's that. My skin's taking a bit of a pounding now too - a bit aged looking and frequent itchy spots over my face which isn't fun. And a cough which I can't shift and which is starting to remind me of a horrible feature of cystic fibrosis that someone once told me about, which is where you are woken up by a violent cough because it's about to choke you - not nice! It's because in amongst the hair loss are the cilia, microscopic hairs that line the respiratory system, which makes congestion harder to shift. They also line the digestive system which is apparently what accounts for the heartburn, acid stomach etc although I'm not really suffering much from that, touch wood.

One thing I am really struck by is how many people are telling me how strong I am. It's a very difficult comment to react to, although it's usually said admiringly, which is nice, but I confess to being a little puzzled by it at times. I suppose it's because over the last few years I have indeed learned how strong I am, particularly through those (often horribly lonely) years after splitting up from John, of taking entire responsibility for my home and the kids when they're with me and working mostly full-time as well. The situation I'm in at the moment, for all it's with an awful and scary disease, is actually a lot easier on me than it would have been had I still been at work (and just one reason why I am so glad I made the decision to leave the SFO). I have a lovely warm house, two wonderful fun children whose lives go fascinatingly on developing, Mike who is a tower of strength and a great cook to boot, John who has picked up with the kids when I have needed it at the drop of a hat and a sterling bunch of friends who have been wonderfully supportive on practical and emotional levels. An awful lot of people go through this sort of crisis without any of this support which I think is the main thing that is helping me. Perhaps they are really the strong ones?

I have also the benefit that I was about to make a new start when all this happened, and I still am when I am not feeling tired or unwell. So I'm quite buoyant no matter how many spots and splutters because I am still in that very lucky position that I was in before. And in the same way as it can be a bad reflection (I remember being genuinely affronted at an electricity bill plopping through the door of my university flat within days of my dad dying), it is also a good one that "life goes on". It doesn't all start revolving around the cancer, even if the cancer is a huge and nasty distraction. Thankfully!

Sunday, 24 January 2010

too busy for this cancer lark!

Had the third chemo session on Wednesday last which went better than the previous one I thought. Just got the hang of all this when it's time to change - the next three sessions are the T part of the FEC-T treatment which is apparently less sicky and nauseous and more limb-achey and tiredness orientated. Lost my enthusiasm for the steroids now so I'm hoping I can come off them for this next lot as they were mainly used to control sickness. Could do with looking less moon-faced and perhaps even losing a bit of weight...

The great thing has been feeling like once the few days of post-chemo are over I am able to get back to some of the stuff I was doing after I left work and before I was so rudely interrupted by all this. That happened last time and I feel this week is going to be the same again hopefully, so have been ploughing through some of my backlogs, thinking about how to earn a crust sometime in the not too distant future when this is all over and even looking at courses I might do - food policy is taking my fancy at the moment (anything to do with food really is no surprise!).

The next things to consider, which I need to find out about, are the possibility of them "switching off" my ovaries to reduce the hormonal stimulus to the cancer and what the radiotherapy will entail (apart from having to go every single day to Sutton for several weeks!). I think fatigue figures fairly large for that stage too. So I am feeling a lot brighter than I was at New Year, will be investigating a few things at the Breast Cancer Haven in Fulham but am otherwise settling into a bit of a "sod-off cancer I was busy doing something else" resentment patch. Which is feeling rather healthy to me!

The other thing I will be following up is the post-surgery stuff. That's because it really is still quite weird, this artificial breast thing. For all I am genuinely amazed and grateful to have a reconstruction that (most importantly) makes me look the same as before to the world at large, even to the extent of enabling me to wear clothes that show a normal cleavage, it is still not a real breast and takes a bit of getting used to in some ways. For example coughing feels really annoyingly tight across where I really am behind the implant; sometimes when I move I can see where the breast tissue has gone from and it really is skin flat to me around the implant; the fact that I have a faint "ghost nerve" sensation in my back where the muscle flap came from if I touch the reconstructed area. All very weird. Not complaining, merely observing...would still recommend having it done at the same time as the mastectomy, as the benefits far outweigh all the above.

And I'm well up for coffee/lunch or visits as normal now till the next session - will be out with both Jil and Karen for coffees next week and had a lovely flying visit from my bros and sister-in-law this morning. All very enjoyable and keeps me pecker up! Next chemo scheduled for Feb 10 so anytime before then is fine.

Monday, 11 January 2010

midway through the good bit

Feeling very well apart from a stinking cold which I am hoping to shift but is taking a long time going. And that despite all those injections to up my blood count. It's very strange knowing you have a cold that could turn into something serious - like the strangeness of so many of these not normal things. I have to keep taking my temperature to make sure it doesn't go up to 38 - once it hits that I have to check into hospital for a 5-day sojourn being intravenously fed antibiotics. Not that I've got any kind of temperature at all at the moment, but it's odd to have to tread on egg-shells so. Guess that's what life is like for so many people - allergies, hyperglycaemia etc.

One interesting thing I learned last chemo session which I forgot to mention is that chemotherapy has increasingly been used over the last ten years for a number of non-cancer conditions, e.g. arthritis and rheumatism. Now there's something I didn't know. Did anyone else out there?

Wednesday, 6 January 2010

retail therapy.

Decided that's my form of cure for feeling down. So Mike, the all-time king of shopping properly with females, and I, went to M&S to spend my voucher from the Pelham parents and another amount I had for clothes. I am now kitted out with a lovely few warming items that are attractive at the same time as cladding my steroid-adjusted bodyweight and hey presto! feeling better already. So thank you again you guys for the voucher, it has worked its magic, and you may now catch sight of me through the beautiful snow sporting a John Lennon cap over my wig. Looks more fetching than I ever used to. Oh and I've accepted I need a new television so we looked at those too.

Well the interesting bit to report is that I am now proudly capable of injecting myself. They sent me away with 5 injection kits that I have to administer to bolster my blood count so that I don't slip in the three-week cycle (apparently the annihiliation of the cancer cells takes 3 weeks so the next chemo ideally should follow straight on). Never had a problem with injections at all but the idea of doing it to yourself is supremely counter-intuitive to me. The nurse explained how to do it and that all I had to do was pinch an inch on the stomach to inject (as if I'd be able to find a spare inch anywhere on my body without going on a high-fat crash diet!). So I did it on Sunday for the first time and amazingly couldn't feel a thing. Astonishingly simple. Hope it doesn't give me any ideas for future highs after the treatment! Only joking.

Enjoy the snow! With the exception of people freezing or having nasty accidents, I think it's a damn fine thing - just think of it as Nature's way of saying stuff you humans, remember where on the planet's pecking order you stand and adjust properly by building a snowman.

Saturday, 2 January 2010

hello again!

It's difficult this blog, cos sometimes I don't feel like putting things when I'm feeling less cheerful. So I'm forcing myself to today.

Chemo 2 has been a little better than chemo 1 in that I managed to avoid being sick, but I have still experienced a fair bit of nausea. Less energy than last time which the wonderful steroids have not managed to avert in the kickass way they did before but I think they still help. I also had pain in the vein when they were injecting the poison this time which was unpleasant but stopped as soon as the session was over thank goodness.

I think I feel decidedly less cheerful with the advent of 2010. I think this is because the shock of it all does bring the upside of a certain amount of novelty value with it initially, and I have meant it every time I have said this or that aspect of it is interesting because it's true. Again, similarities with pregnancy.

Except when you go through your second pregnancy you are more familiar with it, it has less novelty value or interest except insofar as it differs from last time and you are aware of the up-coming less nice bits, as well as the longer-lasting after-effects. So whilst 2009 saw me through the op, recovering from the op and doing chemo for the first time (interesting), I now feel like I'm on a downward drag for the next 7 months of treatment which is tiring and boring. So I will have to hope that the effects of the chemo and radio remain broadly this manageable to allow me to insist on a great list of wonderful things that I want to enjoy. And the really bad thing I am feeling is that at the end of the treatment you don't get a nice plump baby to enjoy as consolation for all that weariness you've endured, or even a certificate to say you've passed, because you haven't. All you've done actually is been treated for a nasty disease in the best way possible to try and prevent its recurrence, but you'll never know until and unless it does. And then you'll only know that it hasn't. Negative? GOOD! I refer you to an excellent article in today's on-line Guardian

I think it was the hair what done it a bit. A word of advice to anyone awaiting their hair loss - give yourself time to prepare yourself for how you want to manage it and then actually BE prepared! (I wasn't and I rushed it too). So there I was thinking Anne-Marie's sterling work on my new hairstyle, which everyone but Gabriel seemed to prefer, was beginning to take a bigger hit than just a bad hair day and wondering if it was fair to moult all over John's house then Julie's and Adrian's house over Xmas and how irritating finding hairs in my mouth was getting, and I decided I should just go for it on Xmas Eve. This wasn't mere impatience but I genuinely wasn't sure if it might start really dropping in clumps and thought I wouldn't like to be away from home managing that. So I took myself upstairs, stood in the bath and calmly started tearing my hair out.

Now that is weird! You just get a clump, pull, and most of it obligingly comes away in your hand with no pain or resistance. (I'm still in interesting at this point and the gradual denuding of my head is not a great shock, although strange). I then have the dilemma of the hair that doesn't come out (a mere smattering, admittedly, but one that anyone with a sense of lawn management knows won't shave well), and duly call upon the talents of my wonderful unfazed fabulous Lucy who happily sets about snipping it all off for me up to the scalp with no apparent repulsion or horror whatsoever. Whadda gal! Potential hairdresser?

But I haven't practiced my scarf-tying, got anything more than Jennifer's two lovely caps and one hat that I've managed to buy nor, most importantly, got my wig cut to a shape that is less like Geraldine McQueen. (Been told that's nonsense by the way, and Julie says the wig shows off highlights to die for). So now I have a bewildering array of odd looks (including now my natural one which I haven't got used to) and new management of heat control which keeps changing all the time meaning my headgear has to keep changing all the time, and - a stronger Samson reaction than I ever realised I had. It's not about looks (not mainly that is) but it is most definitely a power thing. It's another thing gone, another part of you that has to change to a ridiculous extent, and although I'm happy not to look as good as Gail Porter and delighted to think I look better than Jade Goody, I don't really like it. And I'm disappointed to say I'm self-conscious about it even in front of Mike, because it isn't how you should look. Not really.

So there it is. I plan to persuade Anne-Marie to come scarf and banadana shopping with me if she gets the time. Might as well use the occasion to try out a few alternatives :-~