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...

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!

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.

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!

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.

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!

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...