A life turned upside down
Content Warning: Cancer
This is a story of how my life has been turned upside down in the last couple of months, and what I’m currently experiencing.
The Big C
‘We found something concerning. And when I say I’m concerned, I mean I suspect it’s cancer’
… said the doctor after my colonoscopy in April.
Maybe it was because I’d had conscious sedation. Maybe because I heard them taking a bunch of samples during the procedure. Or maybe because by that point my symptoms had got to the point where I just knew something was wrong. But it wasn’t really a shock. On the drive home, my husband and I resorted to dark humour. Then we pretended nothing was wrong as we had dinner with the kids.
‘Unfortunately, the CT scan shows that the cancer has spread to your liver. There is no point in me operating to remove the cancer in your bowel because you can’t live without a liver. We are referring you to the Oncology team at Barts’
… said the consultant surgeon at Whipps Cross Hospital, almost two weeks later (having had to wait across a long bank holiday weekend, holiday period and junior doctors’ strike).
My world fell apart. I was completely shocked. The doctor said words like ‘palliative’, which terrified me — doesn’t that mean you’re dying?
‘They’ll throw everything at you, because you’re young’.
… said the cancer specialist nurse, more positively.
But I still couldn’t really process it. I’d thought I was looking at surgery, chemotherapy and pretty good odds given what I’d heard about bowel cancer. I thought it had been caught early. After all, I went to the GP as soon as I experienced a set of symptoms that the NHS website told me merited contacting the GP. Although the website still stressed that there were many other possible, less terrible, causes of the symptoms. How could it have progressed so far without me knowing?
‘And now the liver is coming into view’
… said the consultant oncologist eight days later at Barts, as we looked at my CT scan. We were looking at a massive organ, that was taking up the full width of my body, that should have been neatly on one side. We were looking for healthy tissue, but there was none. Just cancer.
Something that I’d clearly been repressing became clear to me. It had felt recently like I was pregnant. I was struggling to breathe — the week before I’d managed to perform Verdi’s Requiem using just shallow breaths. How had my brain managed to (largely) ignore the feeling of something so wrong in my body? Seeing it on the screen brought it to life.
But seeing that the liver was basically full of cancer was terrifying. It was what the consultant surgeon had perhaps hinted at (maybe he thought he was being clear, but that certainly wasn’t my experience of the conversation).
I knew the answer, but I had to ask as I looked at the box the consultant had ticked on my consent form under ‘intended benefits’ — not ‘curative’, but ‘disease control/palliative’.
‘I’m sorry. I can’t cure you,’
… she said.
Our world fell apart further. But, then again, this doctor at least had a plan. She was going to treat me. She talked about improving my quality of life. She said nothing about how long I might have. We didn’t ask.
I had to pick up some drugs and the wait at the pharmacy was going to be long. I sent my husband home because I knew the kids would be worrying about why we’d disappeared off again. I travelled home alone, numb.
When the patient is a parent*
(*the title of one of the many booklets I have in a drawer at home)
It was weeks before I cried properly. I stifled little outbursts of tears. All our thoughts went into how and when to tell the kids. We had a teacher strike day and a bank holiday to contend with. Finally, I had a free day to travel into the amazing Maggie’s Centre at Barts and seek some advice on how to talk to kids about a diagnosis of incurable cancer.
Two days later we stopped them leaving for school and told them on the sofa at 8am. My daughter cried and hugged me. My son tried to smile at me in a reassuring way. They’d both sensed something was wrong. It was such a relief to finally tell them.
What followed was, bizarrely, one of the most fun and love-filled days we’ve had as a family. We headed off to a country park for a walk and a delicious lunch in a café (surrounded by people with babies, and old people. Sparking memories of maternity leave). I made several calls to the parents of the friends that our kids wanted to tell, to give them a heads up.
The kids took a while to process the news over the following week. Amazingly, my daughter sat all her SATS. Their friends confused them with stories of people they knew who had recovered from cancer. They kept checking back with us — was it right that Mum would not get better? After a week they started to seem sadder, more withdrawn, but still talking to us. Still asking questions.
Life on chemotherapy
Two weeks to the day after meeting the consultant oncologist, I was in Bart’s starting treatment. During those confusing and uncertain two weeks, the treatment plan was suddenly changed when a test result came back indicating that the cancer cells did not have a mutation in a gene meaning that a drug (belonging to a group known as monoclonal antibodies) might be effective.
‘This is a good thing. It’s a more targeted therapy,’
… said the consultant. This was the first time I’d heard anything from a doctor that did not represent progressively worse news.
The day before treatment I went in to have a PICC line inserted. This is basically a catheter that goes into my arm, up the vein and down to near my heart. A purple tube comes out of my arm which is covered in a dressing that needs changing weekly. No swimming or baths for me anymore. On the plus side, no needles, or cannulas!
So, my life is now governed by a new rhythm…
- On a Monday I travel into Barts to get blood tests and have a pre-assessment.
- All being well, I spend the Wednesday two days later hooked up to IVs for 6–7 hours. As well as the targeted drug (cetuximab), I’m also receiving two kinds of chemotherapy (as part of a treatment generally referred to as FOLFIRI).
- Then I go home attached to a pump containing one of the chemo drugs which slowly releases over 48 hours before a district nurse visits to disconnect it.
- Then we go again 14 days later.
Possible side effects are wide and varied! Two rounds in and it’s manageable so far, but I know most of them will build up over time. A fetching rash has started and there are a variety of other lovely sounding potential skin and nail problems. I’ll almost certainly lose my hair, though perhaps it will thin over the cycles as the follicles stop working rather than suddenly falling out in clumps as is common with some other forms of chemotherapy. I wasn’t nauseous with the first two rounds, which I’m hugely grateful for. I am generally very fatigued, but then that’s been the case increasingly since February when I first contacted my GP.
We do this for six rounds, and then I have another CT scan in August that will show what impact the treatment is having. And then we work out what’s next.
The support of family and friends
At first, I wanted to keep the news close — I hadn’t processed it, and the kids didn’t know, and it was essential they didn’t hear anything from anyone else. Telling the first few friends was hard, but then it got easier, and then I just ripped the band aid off the day we told the children, telling all the friends that we hadn’t yet told. It was just a relief not to have to have that conversation or send that message again.
I needed an easy way to keep friends updated so I set up a WhatsApp community to broadcast messages. This allows people to respond privately to me without being bombarded by seeing others’ responses as they would in a normal group chat. Receiving people’s messages has made me feel incredibly loved and supported. One day I felt really low and shared this, asking for pictures and videos to cheer me up. The response was wonderful. It’s good to know that I can be honest, though I admit I also mainly want to share the good stuff, especially for friends and family who are further away and may be worrying about us.
And another big change
That may sound like enough dramatic life changes for one year. But amid all this I’ve also started a new job!
As I felt increasingly drained earlier this year, I worried more about being freelance. Without the huge amounts of energy it takes to put yourself out there and win work, and then to deliver to a high standard with new clients, often involving facilitation, I wondered whether I could continue.
Then I saw a job advertised that really called to me. I applied, was shortlisted, interviewed, and then offered the job! I hadn’t wanted to get my hopes up, so I hadn’t even told my husband I’d applied for a job, implying instead the process was for a chunky bit of freelance work! I took the night to consider the job offer (but mainly so I could discuss it with my husband) while in a youth hostel on the South Downs Way. The next morning, I accepted from the top of a hill in the sun, and it felt wonderful.
But then the series of conversations with doctors started. The morning after speaking to the second doctor (the surgeon), I had a check in scheduled with my new colleagues, so I told them. It was incredibly raw, and I hadn’t slept much. I asked them if they wanted to withdraw the offer. I suggested working three days a week instead of four. They showed me such love and care in that meeting.
I feel incredibly lucky to have found a role with such amazing people, in an area I’m passionate about, doing things that I think I can do well, but that is also part time, fully remote, and flexible. If I were still working at the large charity where I spent 18 years of my life, I think I’d be taking time off to focus on treatment. But, having something else to focus on right now is just what I need, even if I have to be careful not to exhaust myself. Starting a new job is hard after all, even at the best of times.
Why share this?
I’m writing this because it’s important to me to be able to be open and authentic in my professional life. I want to be able to be honest about how I am. I need people to understand why I may suddenly miss things or not be on top form, because reliability is one of my core values, and I get stressed if I can’t do what I’ve promised. I will have to be easier on myself on that front, but at least I can make sure that others understand what’s going on for me.
I am not sharing this for sympathy and I’m not sharing this for encouragement (and please, don’t share stories with me about people who survived cancer after being told it was incurable).
But I’ll always welcome support and care!
Thanks for reading x
