Last week I had the great news that my MRI and mammogram scans showed no evidence of cancer. There had been over three weeks between the scans and my oncology appointment, so I’d assumed it was good news as I imagine they’d have called me back sooner if they’d seen anything untoward. But it was still a wonderful relief to have the confirmation.
I’ll now be seen at the breast clinic every three months for two years, with an annual MRI and mammogram for five years. And of course, the most important thing is self surveillance – I check my boobs every two weeks. This great app from Breast Cancer Now reminds me if I forget, and I urge everyone to download it and use it.
Whittington Cancer Care Conference
My hospital holds an annual Cancer Care Conference, set up by the Macmillan Information Manager and one of the breast care nurses. They asked me if I would be a speaker this year, talking about the patient’s story, and sharing how important the complementary services have been in helping me through treatment and recovery. I jumped at the chance. I really enjoy public speaking (I would have been on the stage if I’d been talented enough) and it’s important to me that something good comes from my cancer. This quote sums it up beautifully;
Tell the story of the mountain you climbed. Your words could become a page in someone else’s survival guide. Morgan Harper Nichols
So, on 2nd February I gave my half hour talk to the 150 assembled cancer patients, carers and medical staff. In the audience were my oncologist, psychologist, breast care nurse and a number of new friends I’ve made through cancer. I had a wonderful sense of community (a rare commodity in London) and support. And to think, 13 months ago, we did not know each other. That community support is in itself an important part of recovery and resilience.
My talk was accompanied by photos and pictures from the past year – who needs death by powerpoint when you’ve already got cancer to contend with? I was very mindful that there would be others in the room with a worse prognosis than mine, so getting the pitch right was really important. So, it was honest, funny, sad, but hopeful.
The feedback afterwards was quite overwhelming. My oncologist said my talk was fearless. And a number of people approached me during the day to share their thanks, with comments such as “it was like you were telling my story” and “you’ve really helped my daughter”. It was humbling, and I’m so grateful that I am able to articulate my experience. And I’ve been asked to talk at two other events.
How To Cure Cancer
The How To Academy offers talks on a variety of subjects, and recently I attended the Cure Cancer evening. It was in a lecture theatre, 7 speakers (one being my consultant), all terribly intelligent and highly qualified. Would my O-level biology be enough?
It was fascinating, if a little too long. For instance;
Tobacco kills 120,000 each year in the UK, whereas breast cancer is a tenth of this.
Artificial intelligence offers exciting opportunities to speed up the research and development of drugs.
There are great advances in immunotherapy, such as the herpes type 1 virus is now a treatment for melanoma.
Where should we be spending our health budgets? Do we spend enough on prevention and early diagnosis? On London Underground’s Jubilee line, as you travel west to east, there’s a year’s decrease in life expectancy for every stop from Westminster to Canning Town.
As I’m now a member of the UCLH Cancer Collaborative Patient Experience and User Involvement Steering Group, I’m endeavouring to learn more about cancer diagnosis and treatment, not just breast cancer. It is staggering just how complex the world of cancer is. It’s understandable when people want a simple cure for cancer, but there’s so much more to it. And I’m especially interested in preventing cancer in the first place – I never want anyone I care about to have to go through treatment for cancer.
Sorting my head out
Macmillan fund psychologists at my hospital, and I’ve been seeing one of them, Dr Allen, for a couple of months now. The sessions are helping me hugely. There’s much to process – loss, anger, grief, fear- and as my chemo brain recedes I’m in a good place to tackle this.
I’ve also just completed the Macmillan Hope Course. It’s a six week course, one afternoon a week. There is lots of good information, but it’s also a safe, supportive space to talk with others who just “get it”. By happy coincidence, on my course we had all had breast cancer. And I’ve made some wonderful new friends.
What strikes me though, is how few people access all these amazing services. It’s part of the reason for my talk at the conference, and being on the UCLH steering group, to encourage others to help themselves as they reshape their lives after cancer, and process what has happened. I fear that many people just bury it all deep inside and carry on.
I’m still bloody tired
I now wear these when travelling on the tube in rush hour, as I find it quite intolerable, especially when a hot flush waves over me. The cancer on board badge can be ordered here, and TFL offer the blue badge, available to order here.
Unfortunately, no one sitting down seems to look up, so not been successful so far. Friends tell me it’s the same with the Baby On Board badges, and they have a huge pregnancy bump for people to notice!
It’s growing back with gusto. I can’t do a thing with it, but at least it’s come back thick and not any greyer than before. I recently bumped in to someone I haven’t seen for a couple of years, who didn’t know I’d had cancer. She didn’t recognise me and was visibly shocked “You’ve had your hair cut short!”. Not “oh wow, I love your new hairstyle, it really suits you”. Moments like that are crushing.
What have I done? I’ve signed up to cycle London Ride 100 for Breast Cancer Now (yes, I will be asking for sponsorship). I’ve cycled it three times before, so know what to expect. Which makes it even more baffling that I’ve signed up for it. But, it’s a great goal to have to encourage me to regain my fitness.
Lovely flowers from my lovely Mum and Dad x