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.


  1. Hi Belinda
    Wow. I know you gave hints of what happened to you during radiotherapy but this really is informative. Very scary but amazing.
    Good to see you the other day looking so well.

  2. Hi Belinda
    Very Informative! Great you are keeping us all up to date.

    Not long now! Hope the next couple of pass quickly and I'll look out for the next instalment.

    Thinking of you, Love Alex x

  3. Hi Belinda! Many thanks for keeping those of us in the 'shires' up to date. Say to Lucy and Gabriel for us.
    Helen & Co x

  4. oops, my 'hi' seems to have fallen off!
    Helen x