Blog: The Big J vs The Big C
Making the breast of a bad situation ...
On 4 October 2016, I was diagnosed with breast cancer. This blog will chart my progress through treatment, and continued enjoyment of life, love and friendship.
Expect humour, irreverance, occasional sadness, and staunch defence of the National Health Service.
Btw, that picture is not me. :-)
Two weeks in, I have reached half time in my radiotherapy. I almost expected someone to run in with a tray of quaretered oranges to deliver a pep talk. But no such luck.
I have to say, oddly enough, that I am rather enjoying it. I make a daily trip on a bus that takes less than an hour to a lovely hospital where I lie down on a comfortable bed while supportive, good-humoured and non-judgemental staff give me a totally painless, non-invasive, ten-minute treatment. And despite cautions from others who have been treated elsewhere, I don't even have to sit around waiting. They pretty much treat me as soon as I get there.
There is a series of rooms, each with a Linear Accelerator (Linac) machine (pictured), and in Bart's they are named after planets. At the beginning of htis week, I was in Saturn; for the last couple of days I have been in Venus, which has filled my head with a Banarama song. You may be relieved to know that there is not a Uranus, not even for colorectal cancer patients.
Thousands of people affected by cancer click the link, wanting to read some rare good news, wanting to gain at least a little control over their or their loved one’s fate.
Knowledge is power, and of course anyone facing a life-threatening illness – and anyone interested in human progress – wants to read about new insights, new discoveries, new hope. With the pharmaceutical industry driven by marketing-for-profit, it is little surprise that people do not necessarily trust the medical establishment and want to look at other options.
Some of the reports are informative and useful. But sadly, much is exaggerated, flimsy and tenuous, fronted up by headlines that function as clickbait.
After my breast cancer surgery, the factors which indicate whether I would benefit from chemotherapy were inconclusive. There was one further test available. The Oncotype DX test examines the activity of 21 genes in the tumour tissue of patients with early-stage oestrogen-receptor-positive (ER+) invasive breast cancer and calculates whether chemo will be effective or not.
My score was low (14/100), and so, like many others since this test was developed a few years ago, I do not have to go through the puking, hair-losing agonies of fighting cancer by throwing poisons at it. So far, so good.
So, what’s the catch? My tumour had to be sent to the USA to be tested. This took a few weeks, which delayed the start of my radiotherapy, reducing its effectiveness of in preventing the cancer returning. Radiotherapy is supposed to start within six weeks of surgery; mine started twelve weeks after. Only time will reveal the impact of this delay – but it could mean that my cancer comes back when it would not have done so otherwise.
Day 1 radiotherapy. Pleasant bus ride. Arrive early. Brought good book, as suggested by several people. The book is actually a course of writing exercises, so it will be accompanying me every day.
See radiotherapist. She's cool. Turns out she's the union rep (unions and lefty politics usually come up in conversation pretty quickly when I am the patient).
Run through the forms and questions again. If I had a pound for every time I have told a member of medical staff my date of birth, I could probably buy a small pharmaceutical firm by now.
Each year, there are over 55,000 new diagnoses of breast cancer in the UK, 3,000 new diagnoses of cervical cancer, over 7,000 of ovarian cancer, over 9,000 of uterine cancer, and over 1,000 of vulval cancer. Nearly 12,000 UK women die each year from breast cancer, over 4,000 from ovarian cancer, over 2,000 from uterine cancer, nearly 500 from vulval cancer, and nearly 900 from cervical cancer.
1 in 8 women will develop breast cancer during their lifetime. Think of all the women you know: one in eight of them. Think of all the women in your workplace and in your trade union: one in eight of them.
Research has linked 4-5% of breast cancer cases to shift work, due to circadian (body clock) disruption and exposure to artificial light at night. Studies have shown that breast cancer risk is 21% higher in women who have ever experienced circadian disruption, mainly through night work, compared with those who have not. Exposure to certain substances at work also increases the risk of breast and other women's cancers.
The first of what I hope will be a regular feature, this guest post is from Veronica.
I just wanted to say how very much I am enjoying your blog.
I was diagnosed with grade 3 invasive ductal cancer in my left breast on 13 October so your story and experience are similar to mine - although I have just completed four cycles of pre-surgery chemotherapy which has been every bit as vile and debilitating as I feared. I am typing this from bed fully eight days after the last treatment and very annoyed not to be able to muster the energy for a gig tonight for which we bought tickets ages ago.
You don’t notice a lump growing in a big breast, do you, until it’s a real problem? I had the sentinel lymph node biopsy op on 4 November though and fortunately that was clear so I feel I have dodged a very big bullet.
Yesterday was my radiotherapy booking-in appointment. So, off I went to the basement of Bart's hospital to be fitted and measured.
Some more forms to fill in and consents to be signed - this time, consenting to have permanent marks made on my body. Until now, I have avoided having tattoos: it just doesn't appeal to me, though I've sometimes thought I might take it up in later life. Never did I consider that the design would be three small dots. But there you go: I'll think of it as abstract art.
Strip to the waist again, and put on this gown. I share the waiting area with a hairless woman and her two kids, a young adult daughter and a teenage-ish son. She's having radiotherapy to her brain. I ponder on how lucky I am.
Then it's off to the radiotherapy room, past a door marked "Mould Room": I think I'll stay out of there.
My team of three radiotherapists - two women and a man - are all friendly and kind. When I mention I'm a poet, they ask for an ode, and the only one that comes to mind is Jeremy Hunt. Really, you can't go wrong having a go at Jeremy Hunt to NHS staff. My joke about sending my tumour to the USA goes down well too. "We've got a comedian here", they advise colleagues.
In my last treatment update post, I told of the two mysterious appointments in early January. Mysterious indeed. I turned up for the first one and discovered that both of them had been booked by mistake!
Keen for the trip to Bart's not to have been a waste of time, I managed to come away armed with more test results, some pamphlets, a 3-month sick note and an invitation to a free massage whenever I want one. Result.
Reading one of the pamphlets - on food and drink during cancer treatment - I discovered that I have not been consuming enough alcohol. As an obedient and sensible patient, I resolve to address this shortcoming.
The tiredness, dizziness and headaches that beghan a week after starting Tamoxifen continued unabated. I ended up phoning the cancer nurses, who got back to me saying that the doctors want me to have a brain scan. I await the appointment. But of course, no sooner had I phoned up moaning about my side effects than said side effects abated!