Today I am two-thirds of the way through radiotherapy.
It’s a slightly strange experience. Not painful, but uncomfortable: lying with your arm at a bit of an odd angle for 15 mins or so pulls on muscles that are already sore from surgery and general prodding and poking, so afterwards everything feels slightly stretched.
The inside of my arm and a part of my breast are numb from the surgery. The rest of my breast is tender, and itches like mad from the “sunburn” the high-energy radiotherapy rays causes. You are supposed to use aqueous cream to help with this but I have to admit I am not very good at it: at first I didn’t want to touch my breast because it was sore. But if I’m honest it was also because I’ve felt angry with my body for letting me down (ridiculous I know) and have not wanted to look at, or look after, that part of it.
I am still struggling a bit with what my breast now looks like. I’ve been fortunate in needing a lumpectomy (a wide local excision to give it its proper name), rather than a mastectomy, which means that literally a biggish ‘lump’ of tumour and surrounding tissue has been removed.
I have three scars: a small crescent-shaped tumour biopsy scar to the right of my nipple; a 3cm scar near my armpit from the lymph node biopsy and a 2cm scar that curves around the top my nipple where the tumour was cut out.
I also have a sizeable dent (the surgeons call it a dimple) where the tissue’s been removed.
It does not look terrible – a bit angry and inflamed at present, but that will go. Topless modelling is probably out but I think I can live with that. I am very fortunate: I did not have to have chemotherapy and my prognosis is good.
There have been many days when I have not felt fortunate (and rightly so: discovering on the ninth anniversary of your son’s death that you are pregnant, finding out three days later you have cancer, and then having a termination are very difficult to cope with, and it is hard not to feel at times that fate has it in for you). But I do feel fortunate today.
I feel fortunate because the cancer was discovered early (almost by chance) and was therefore very treatable. I am fortunate that I live somewhere with access to fantastic medical care and treatment that isn’t dependent on whether you can afford it.
I feel fortunate to have family and friends who have looked after and supported me even when I have been (ok – still am) a complete nightmare to be around.
I’m fortunate because today I got to sit in a beautiful London square in the autumn sunshine, and at that moment it seemed quite enough just to be there, and much more than some people ever have.
Posted in autumn, cancer, family, health, healthcare, London, NHS, radiotherapy, sunshine, trees, Uncategorized, women, women's health
Tagged autumn, breast cancer, cancer, health, healthcare, London, NHS, radiotherapy, sunshine, trees, women
Until a few days ago I had no idea that when you have radiotherapy you get a tattoo. In my case, two tiny pinpricks that, charmingly, look like largish blackheads. They are there to help ensure the radiation is delivered in exactly the right place every time.
Apparently you can get them zapped with a laser when treatment is finished, though my oncologist (not ominously I hope), told me they are a useful reference point “in case anything else is needed in the future”.
I read about someone who turned hers into a tattoo of a butterfly, which sounded rather lovely. Butterflies symbolise change, a new life after a period of transformation. In Mandarin Chinese the word for butterfly is “hu-tieh”. “Tieh” means “70 years”, so butterflies have become a symbol for a long life.
Unfortunately the location of my marks would make a butterfly tattoo look a bit ridiculous I think. But perhaps I’ll just keep my little pinpricks as an indelible reminder of the past few months and an omen for the future.
Posted in breast cancer, cancer, health, Uncategorized, women, women's health
Tagged breast cancer, butterfly, cancer, Chinese, health, radiotherapy, tattoo, women
I had a termination.
I had a termination to give myself the best chance of overcoming cancer, for the sake of my family. But it was one of the hardest, most distressing and painful decisions that I have ever had to make.
It has brought back many, many difficult emotions and memories of the death of my son nine years ago. This is another, extraordinarily painful, loss. The pain may not last as long this time, but it is as excruciating.
I have been grief-stricken, and tormented by guilt and “what ifs” about the decision I took, even though the sane and rational part of me knows I didn’t have much of a choice and that I made it for sound reasons.
Some people have said it was a brave and selfless thing to do; right now it doesn’t seem like that.
So my (I really do not want it to be “my”) cancer has not spread, but I will need more surgery to ensure there’s a sufficient margin of healthy tissue around the tumour that was removed. And I need radiotherapy and Tamoxifen (the side effects of which appear to be all the symptoms of the menopause – I can’t wait).
Now time has run out and I have to make a decision about whether or not to continue my pregnancy. I have spent the last two weeks thinking of little else, and it has been an appalling time. For health-related reasons I have decided to have a termination. But the thought of it distresses me hugely.
I have talked about what to do endlessly and believe I have considered it from every possible angle; I am exhausted by it. I had hoped that by now I would feel in my gut what the right decision was, but I don’t, so I am making a decision based on what I believe to be for the greater good, what seems fairest all round, and what is, rationally speaking, perhaps the most sensible decision.
Two people whose opinions matter have said they believe it to be the “right” decision, but is it? From whose point of view? And can there be a “right” decision in a situation like this, or is it just the least wrong?
My GP said that whatever I decided it would be all right in the end. She is probably correct – I have to believe she is, though at present I cannot see it.
What a terrible situation to be in, and what a terrible decision to have to make.
- Everything is going to be alright, Martin Creed, Clapton Portico, 1999
Years ago this installation by Martin Creed appeared on the front of the former orphan asylum in Clapton, east London. I love the simplicity of the message, and it has never failed to reassure or cheer me up. I decided to call this blog Everything’s going to be all right in the hope that it will be.
On some level Creed is probably being ironic of course, but I’m going to stick with the un-ironic interpretation.
Everything is going to be alright has since appeared in galleries worldwide, including Tate Britain, the Palazzo dell’Arengario, Milan and the Museum of Contemporary Art in Detroit.
Fantastic, however you choose to read it.
Posted in art, breast cancer, contemporary art, health, pregnancy, Uncategorized, women
Tagged art, breast cancer, contemporary art, health, pregnancy, women
I think I’ve done fairly well at being reasonable since the weekend. I have shouted at the children only as much as I normally would (less, probably, as I’ve been tucked up in bed for much of the time); I’ve only behaved childishly once (phone call to my mum and I am going to apologise).
It’s a huge relief not to feel as angry as I did a week or so ago (though I’m not stupid enough to think I won’t feel the same way again over the coming months). It’s a very long time since I have experienced such an overwhelming surge of destructive energy, the desire to smash and hurt (fortunately not literally).
I’m sure I was a nightmare to live with for a good few days: periods of shouting and stomping around the house screaming about the utter unfairness of it all alternating with hours of deep depression when I refused to speak to anyone, or at least to say anything reasonable or positive. All completely understandable (and I daresay normal) responses, but horrible all the same. I’ve been there before and I don’t like it. I don’t want to be that wretched, unhinged woman.
I feel isolated too. It’s like being on the opposite side of the road to everyone else and not being able to cross back. My experience is suddenly different to all of theirs, and nothing will ever be the same again. I’ve been there before too and I hate it.
I just want things to be normal – I don’t want to have to deal with breast cancer and pregnancy at the same time, to have to contemplate awful decisions, to think about my own mortality. I just want to get on with my life.
So today I am trying to take it easy. I’m sore, part of my arm’s numb, I’m pissed off and unbelievably knackered. I assume the latter is partly the after-effects of surgery and general anaesthesia, and partly being ten weeks pregnant.
On Friday I had a wide area excision – an operation to remove a small tumour and some surrounding tissue. I also had some lymph nodes samples taken to see whether the cancer has spread. I cannot believe it has, but then I still can’t really believe I had (have?) it in the first place. In theory, I might not get my results for another ten days, which seems a hideously long time to wait and, from the pregnancy point of view, agonising.
I have decided not to make any decisions about this pregnancy until I get the results. The odds are massively stacked against it: my age (mid-forties); tumour type (apparently if it’s oestrogen receptor positive continuing with a pregnancy would probably be bonkers); possible follow-up treatment required (radiotherapy or chemo – neither great in pregnancy); the fact that I hadn’t planned to have any more children. Oh, and the fact that this baby has a one in four chance of having a rare and fatal genetic condition (we will need an amnio or CVS to tell).
But, perhaps stupidly, or for other reasons I can’t or don’t want to explain, I don’t feel able to give up on it just yet. I do not want to make a decision that I might subsequently regret without knowing all the facts. And the risks of course. But the clock is ticking – I cannot leave it too long to make that decision.