Seven years ago I was diagnosed with stage 2 bowel cancer at the age of 39. Happily, I was declared cancer-free 18 months later. Yet for me, and thousands of others successfully treated for cancer, that is not the end of it.
I’ve struggled with pain and complications from my treatment every day since. That doesn’t mean I’m not grateful to be here. I am. Intensely. But as anyone who has had cancer knows, survival is not straightforward.
Yet it is on this point that Health Secretary Wes Streeting’s National Cancer Plan for England, released this month, spectacularly fails. It states the aim that, by 2035, three-quarters of patients diagnosed with the disease five years earlier are expected to be cancer-free or living well with it. So far, so good.
But what comes next, when those people are discharged? It says little of survivorship in its 86 pages. And that is infuriating.
It fails the many thousands of people who, like me, still endure the physical and psychological effects of cancer and its treatment many years after discharge.
In my case, heated chemotherapy, known as HIPEC – delivered straight into the abdomen to mop up any remaining cancer cells after surgery – left my organs stuck together with scar tissue. My small and large bowel got twisted up like a ball of string. My bladder was stuck to my womb, which was stuck to my bowel, as were my ovaries.
Eating was hard and painful, while going to the toilet was excruciating, urgent and often involved going tens of times in an hour.
I stopped eating breakfast so that I could go to work, but had many days of intense pain and vomiting nonetheless.
Dr Philippa Kaye was diagnosed with bowel cancer seven years ago and is still being treated
Back in hospital this month for major surgery to correct complications caused by her treatment
She underwent a procedure that saw her uterus and ovaries removed
I managed for as long as I could, until I couldn’t manage any more.
So, three weeks ago, I had major surgery to remove my uterus and ovaries, to peel my bladder off other organs and to separate the scar tissue sticking my small and large intestines together. It took many hours, and involved a gynaecologist, a colorectal surgeon, a urologist and a robot.
I was in intensive care for 24 hours and spent a week in hospital. I’ll need six weeks off work. It also brought back lots of difficult emotions from the previous surgery when there was a real chance I could have died on the table.
Ironically, I was in hospital recovering when the Government released its cancer plan. I even got a call from the Department of Health asking whether I’d like to interview Streeting about it.
The plan is, of course, welcome and hugely ambitious. Along with improving survival rates, it will invest £2.3billion in early diagnosis, funding 9.5million additional tests within three years – including new scanners, digital technology and automated testing.
It says, after treatment finishes, patients will get a ‘personalised support plan’ to cover the continuing impact of cancer on their lives – from anxiety and fatigue to diet and returning to work.
Everyone will get a ‘named lead’ responsible for joining up their care after treatment.
But let’s be realistic. Ultimately, this means signposting people to charities and third sector organisations which will quickly become overwhelmed. How else is it to be staffed in an underfunded NHS?
And what isn’t covered is proactive support – such as regular meetings with people who understand your needs. Because life is different after cancer.
I feel guilty even mentioning this, because of friends who aren’t here any more and because of the deep gratitude that I still am. And yet I’m not alone. My inbox and GP surgery are filled with people in the same position.
Let me explain. There is a period when you’re seen regularly in hospital – appointments, scans, treatment – and you feel very safe. Everyone knows your name. Then those appointments get further apart – every three months, six months, once a year. After five years, often the oncology team will say goodbye.
The safety net vanishes but the constant, all-encompassing worry that any new symptom is your cancer returning remains. Many patients need ongoing support for psychological and physical issues relating to their treatment, some of which only emerge later on. I had therapy for years.
But my treatment also put me into premature menopause at 39 and I wasn’t offered HRT, which is necessary at that age to protect the bones, heart and brain – I had to be the one to ask for that.
We know there are mental health issues related to having cancer, there is ongoing fatigue and follow-ups are needed depending on what type of cancer you’ve had.
Patients with breast cancer who’ve had reconstructive surgery usually need it done again after ten years – a breast reconstruction is not a lifelong surgery.
Other cancer patients might have a stoma, or be left with lymphoedema, which causes swelling and fluid retention in the arms after damage to the lymphatic system from surgery or radiotherapy. Some parts of the world recognise this and have policies to deal with it.
One of my patients from Australia told me they used to get an annual check-up with a team including an oncologist, dietitian, physiotherapist and GP. The idea is that if you need anything it can be discussed and advice given on the spot or referrals made.
If the Government’s aim is for three in four patients to be cancer-free or living well five years after diagnosis by 2035, it will create a new and wonderful problem – more people surviving cancer.
It’s why, when I sent a video message to Streeting from my hospital room, I asked him what comes next – what plans did he have for survivors? He acknowledged this would be a ‘growing challenge’.
What I would suggest is the checks don’t stop. Even after discharge we need access to a range of specialists who can help if needed. I’m so incredibly thankful to be a cancer survivor. Yet it isn’t enough to survive cancer – you have to survive well.
