A couple of months ago I discovered a blog called Ramblings of a Bad Fairy. I thought it was wonderful – brave, funny, honest, inspiring, incredibly moving and beautifully written. I have looked forward to reading it ever since, and have never read a post without feeling awed and humbled afterwards.
Tonight when I went to check out the latest Bad Fairy doings I found out that she had died. She was 40 years old, with a husband and two young children.
I never knew you, Bad Fairy, but I wish I had.
Rest in peace.
Posted in blog, breast cancer, cancer, death, family, health, Uncategorized
Tagged breast cancer, cancer, death, family, health, inspirational
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
When I was at primary school the good girls got to make really kitsch pleated cushions (it was the ’70s); I am not sure what the bad girls got to make.
Being a good girl, I’ve decided to have another go at the RKPCs as a) I’m convinced they must be in vogue once again (or will be soon), and b) it’ll stop me spending quite so much time thinking about cancer.
Scarily, I can remember almost word for word Sister Basil’s instructions for making the RKPCs (one of the many benefits of attending a convent school). Apart, that is, from how much bloody fabric you need to make the things. As a result I will end up with something that looks rather more like a bolster (or possibly a fat draught excluder) than the sumptuous boudoir cushion I had in mind.
It’s been quite enjoyable though, not least because I got to discover The Cloth House in Berwick Street. I also spent a happy hour Googling the real name for RKPCs and came across both some wonderful 1970s sewing patterns and the correct term for Sister Basil’s sewing technique: Canadian Smocking.
Here’s what my handiwork looks like so far. Unfortunately the pic doesn’t do justice to the beautiful turquoise velvet it’s made from….
Posted in breast cancer, cancer, crafts, family, health, sewing
Tagged 1970s, breast cancer, Canadian smocking, cancer, crafts, health, sewing, smocking, women
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.
Today is second opinion day. Not that I’ve had a full first opinion yet: despite the fact that the hospital is aware of my pregnancy and that I may need to take some hard decisions sooner rather than later they seem incapable of speeding things up. Having been told I could probably get some interim results from my surgery and lymph node biopsy at the end of last week, no histopathology appeared to have been done at all when I called. I was distraught.
It seems to me that the hospital regards my pregnancy as a huge inconvenience – it simply doesn’t fit into their way of seeing/doing/treating things. But surely this can’t be the first time they’ve encountered a pregnant women with breast cancer (they are a specialist BC unit after all)? I know it’s rare but it’s not unheard of – in fact I’ve seen some stats that suggest BC occurs in one in every 3,000 pregnancies (though that seems a bit high to me).
Anyway, thanks to my wonderful GP I have an appointment later today with an extremely well-regarded consultant at another hospital. If all goes well, I shall transfer my treatment to Hospital B. It may sound melodramatic, but frankly I don’t feel particularly safe at Hospital A – I’ve lost all confidence in them at any rate.
It feels like it’s been a battle from the start, and I don’t have the energy for it. I could rant for hours but there’s no point. (I’ve also complained but that doesn’t seem to have done much good either.)
Suffice it to say that things like the ward sister assuming I’d come in for ear, nose and throat surgery rather than breast cancer surgery, and one of the nurses looking like a frightened rabbit when I told her I was pregnant (“And you’re having a general anaesthetic?! No one told us!”), have not helped.
There was also an incident where, an hour after I’d received my initial diagnosis and was sitting in the waiting room I was approached by a doctor who leaned over, thrust a piece of paper into my hand and mumbled something that seemed to finish with the words “…in the event of your death – God forbid – you can help others.” It appeared she was trying to recruit me for a clinical study. When I complained about her inappropriate and insensitive approach she maintained that she had said “blood clot”, not “death”. Maybe so, but if she’d bothered to sit down and explain things properly, or even better done it in a different place and at a different time, the situation wouldn’t have arisen in the first place.