Fiona, breast cancer.
When were you diagnosed and what with?
I was diagnosed with breast cancer on December 3, 2014.
How did you find out you had cancer?
I was away at a work conference staying at a hotel. The angles in the hotel bathroom were different to home. Stepping out of the shower, I noticed a kind of hollow area which I’d never seen before.
What did you think and feel when you were diagnosed?
There was a strong family history of breast cancer, and I was already getting annual mammograms because of that. The last one in March 2014 had been clear. For the next two days of the conference, I just put it to the back of my mind and enjoyed being with colleagues and friends. The day after I got home I went to the GP and she referred me to the local breast clinic.
The consultant I saw examined me then sent me for a mammogram and ultrasound and a biopsy. As I waited, I realised that I was fully expecting a cancer diagnosis. I wasn’t feeling sorry for myself, or dramatic or anything, just quite sure that’s what would happen. Needless to say, that calm feeling didn’t last – but at that moment I felt quite accepting and pragmatic about it.
The days waiting for the biopsy results seemed to take forever. Eventually my December 3rd appointment arrived: it was cancer, and I would have a mastectomy on December 9th. I was not shocked by the diagnosis – I had been expecting it – but I was utterly taken aback that the surgery would be so soon. I had imagined nothing would happen till after Christmas.
The breast nurse took me into a quiet room. I had some questions, which she answered, but I had gone into practical mode and was in a hurry to get back to my desk – I wanted to get as much done as I could before the operation day. My first wobble came when she told me in no uncertain terms that I wouldn’t be back at work that day or until after surgery. She then gave me what she called a ‘cancer perk’ – free hospital parking. I was horrified to see that it was valid for six months. My surgery was only days away - how could I possibly need free parking till June??
How did the people around you react?
I phoned my partner from hospital and told him. He wasn’t prepared for it. I guess I had kept my certainty to myself – and he’s an optimist anyway. He said he would come and meet me in a café as I didn’t want to go straight home. That was the most surreal coffee I have ever had. My partner looked completely shell-shocked. I have no idea how I looked. Wild, probably.
Those days waiting for surgery were awful. I slept really badly. I kept waking up from nightmares where my breast had been removed only for the doctors to find there was no cancer after all. Or nightmares where they removed the wrong part of me. Or where I died on the operating table. I waited till Friday after school to tell my 8 year old daughter – I needed to work out what to say and how to say it. For her, cancer was not a scary word. All she knew of it was that her Granny had had it years ago, an operation had taken it away, and she was fine. She reacted really well, and has been great throughout.
What treatment did you have?
I had a mastectomy and only three lymph nodes removed. I got the results of surgery on Christmas Eve, which is also my partner’s birthday. The good news was that they had got clear margins and all the cancer had been removed. But 80mm of lobular cancer was more than they had expected to find, so I had to make a decision about chemotherapy. With an 8 year old daughter, I felt I had to do what I could and take what was available, but it was a hard decision.
I have a heart condition so couldn’t have FEC chemo – instead I was given an old chemo combination, CMF. I also had 15 sessions of radiotherapy.
How did you feel through treatment?
My body really struggled with chemo. I was in hospital twice, once with neutropenia, and once with an infection that needed an antibiotic drip. I missed several rounds of chemo because of low platelets. I felt ill and weak, and my mouth was always sore. Mentally, I coped really badly with feeling like I was failing every time my blood counts weren’t good enough for chemo. My periods stopped after the first round, which no-one seemed to even care about (OK, I had a child, but still it bothered me that no-one ever asked me, or checked how I felt about that). My hair didn’t completely fall out, but it was very thin and patchy – I shaved it when I couldn’t stand the hairballs everywhere. The original plan of 6 rounds of chemo was endlessly adjusted. The chemo nurse told me at one point that they were ‘just making it up as they went along’. I ended up having 8 rounds, each at half the dose they had originally planned. I finally finished on August 20, 2015.
Even though I felt rubbish almost all the time, life went on – as it does. I couldn’t work, but I still looked after my daughter, did the shopping, met up with friends, even got myself a weekly Spanish conversation class at my house, just to keep my brain ticking over. While I was on chemo, my partner and daughter and I had some really good times - a weekend away, a boat trip off the coast to see the puffins, a trip to stay with friends to show off my chemo wig (which I wore for all of about 2 weeks before deciding I preferred to air my scalp than have hair!). I went to my daughter’s school plays, gymnastics competitions, year 4 leavers party, and was just another mum shedding tears of pride like all the other mums.
After that came radiotherapy. Compared to the caring and chatty environment on the chemo ward, it was all so impersonal and relentless. I felt like I wasn’t part of it – my only role was to get my body there and hand it over to the technicians and the machines. It was an alienating experience. I was relieved to finish on October 20.
What happened after treatment finished?
By then I was focusing on other things. My best friend died of sarcoma on October 27, 2015 aged 50, and there were things to do and a cremation and memorial service to take part in.
I was also looking after my mum, who had been diagnosed with ovarian cancer in July. After her surgery, I was caring for her 24/7 until she died on December 28, 2015. So I didn’t really have that feeling of being cast adrift that people often talk about when they finish treatment – I was plunged into a whole cancer world that was not about me but about my beloved mum and my dear friend.
In April 2016 I had a second, risk-reducing mastectomy. That was the right thing for me. I feel like I can start to move on, though cancer now feels like a permanent part of my identity.
How did you get involved with Shine?
I signed up for the fab Shine Working After Cancer workshop in Newcastle in June 2015. I saw a flyer for it at my oncology unit, and thought it could help me to make some plans since I’d had to give up my freelance work during chemotherapy.
What difference has Shine made to you?
My family and friends were totally brilliant. My partner and daughter were amazing. One friend in particular was a star – she took me out when I felt up to it, came with me to chemo, even baked me surprisingly delicious kale cakes to try to get my platelet counts up! But most of the people I knew were at work during the day, and I didn’t have energy to do things in the evenings. So Shine was a lifesaver. I joined the Facebook group a couple of months into chemo. One night I couldn’t sleep, and introduced myself on the page. Within minutes, I had lovely replies from several people who lived really close to me! The isolation was broken, and I had a new group of friends who knew from experience what I was going through.
How do you feel now about your experiences? What‘s been the biggest change you’ve faced?
I’ve been overwhelmed at the cards, flowers, care and support since my diagnosis. Having to accept a lot of help has cemented some friendships. Sure, sometimes people say the wrong thing, or stay away because they just don’t know what to say, but generally people have tried very hard to show they care.
If you could give one piece of advice to yourself before your what would it be?
I’m not really into giving advice, but two things occur to me. One is that people usually act with the very best of intentions. The other is that any sense of having control over what happens in life is a mirage. The best I can hope for is to try to be loving and caring and live according to my values - and not lose sight of them when things take an unexpected