Finally I felt ready yesterday to talk with a friend who’s been living with metastatic breast cancer for some time. I was putting it off because I couldn’t quite get to grips with the idea that my apparently non-invasive breast cancer (I had Ductal Carcinoma In Situ, or DCIS, diagnosed in Dec 2010) is the most likely reason I’m in this situation now.
I researched DCIS in depth at the time, obtained copies of my histology reports and made some key discoveries, which I discussed with my surgeon. I was treated conservatively in the first instance, which is wholly justified in the majority of cases of DCIS; indeed there’s a strong argument that surgery is unnecessary for a significant number of lower grade DCIS (low grade means not very active so you can leave it and wait and see; high grade is aggressive and needs to be treated). Mine was found to be high grade and larger than the expected 10mm, at between 50 and 60mm. For that reason, I was recommended to have a mastectomy by the multi disciplinary team (MDT) while my surgeon was away; he disagreed with their recommendation because there were clear margins around the lesion.
For various reasons involving the type and grade of DCIS, I went with the MDT and also persuaded my surgeon to perform bilateral mastectomies. It was complicated, and involved an open discussion. I had felt always that I’d been lucky because my cancer had been caught by accident (I’d had a benign cyst which sent me to the clinic where the DCIS was picked up on mammogram) and the mastectomies meant no further treatment. In particular, I avoided radiotherapy which would have been necessary had I stuck with the original wide local excision surgery (known colloquially as a lumpectomy). Radiotherapy isn’t pleasant and has significant side effects.
I was signed off from the breast cancer clinic after a year, having had a brief check-up and review, thinking phew, that’s that over with. And over all that time my mother was going through treatment for a new aggressive breast cancer in her left breast, having been treated successfully 18 years earlier for three different types of tumour in her right.
So the talk with my friend involved some acknowledgements of the thought that I haven’t been so lucky after all, along with the missing primary tumour option; of course my primary tumour has long gone with the original lumpectomy and then mastectomies. So the thought of what Mr Fewings called a seedling landing in my brain via the bloodstream, and perhaps some in my lung via blood or lymph, is quite surreal. The MDT meeting for my case was yesterday, so they know the answers, it’s just that I don’t yet. And of course it’s Easter.
Living with cancer is something my friend understands. Waiting for scan results is her worst time, and of course that’s a regular occurrence. But mostly she lives her life, tries to stay healthy and fit, plans a little ahead but not more than a year. We discuss the positivity thing, it’s uses and the downside. Be kind to yourself is her thought. Don’t blame and pressure yourself for not being well. Penny Brohn is one of her recommendations, and my friend found it incredibly useful for her state of mind, for coping with the fear and anxiety. So I will be looking at that once I know what’s happening next (always once I know what’s next). There’s also a minefield of treatments, all tied up with Big Pharma and its massive power to charge for expensive drugs for which the evidence is not always clear. I can highly recommend reading Dr Ben Goldacre on that topic. My friend has done her own research, and in some cases has asked a doctor friend to do it for her where she knew she’d find information she didn’t wish to know. She’s asked for one treatment in particular that wasn’t recommended in the mainstream, but which has been excellent for her. So taking charge is key.
It was a kind of dredging to let the flood waters speed through discussion for me. Half formed and suppressed thoughts soaking the ground and forming a quagmire. Such a wise woman, my friend. So good at articulating and thinking beyond the obvious. It’s not been an easy journey for her, and to gain the benefits of her experiences is beyond price for me. We are part of a small group of women who met through having breast cancer on the Breast Cancer Care forums. We all had mastectomies in March 2011, and supported each other virtually via a secret Facebook group. We’ve been through a series of cancer and non-cancer related life events since, and have met in person in London, and for a spa weekend in Wiltshire. More genuine friendships and support via social media. It can be such a marvel.
I suppose in summary, I’m in an odd place this week. But I feel a breakthrough.
Head and Boggy
My boggy head bubbles pop and blip and bloop less often, then disappear rather suddenly. Removing the clips had released some scalp pressure, and washing my hair 24 hours later was bliss; the touch of water easing it all, the cleanness of it, is a catharsis. All those icky sticky bits, blood, bugs, staleness, washed away. It’s sore rather than painful, certainly the least painful surgery I’ve had.
Then the head feel changes again. The vestiges of the Hunt headache have dissolved to a wisp of ectoplasm, and now there’s the tightness over the site of the craniotomy. When I pressed the dressing accidentally on day 3, I felt a definite squidge and it was hard to resist squidging it some more to see what happened. I felt it when travelling by car, centrifugal force pushing fluids outwards. Now the squidge has gone and in in its place is a firm, circular pressure. I guess this is the bone, screwed back into place, starting to re-grow to fill in the gap. I’m still sleeping propped up, because the sensation of pressure increases as I lean towards the horizontal.
I’ve finished the Kepra now, and am on day 3 of the low dose of dexamethasone; just 2mg twice a day. This morning I’ve felt able to resist my first breakfast (the 3am one) which is a breakthrough; while hungry, I’ve lost that horrible gut gnawing. The steroids have all but wiped out the osteoarthritis in my hands and knees, although I can feel the lack of muscle around the knees. My back, trashed by a decade on ambulances and the site of recurrent injuries – most recently a bulging disc – is an absolute dream. I was also due to have shoulder decompression surgery and the pain from certain movements and from lying on my left side (the side I have to lie on at the moment) was a constant; no longer. If it weren’t for the cancer I could probably do cartwheels. If I lost weight, that is…