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Seven years ago, at the age of 39, I received a stage 2 bowel cancer diagnosis. Fortunately, after 18 months, I was declared cancer-free. However, for me and countless others who have successfully battled cancer, that’s not where the journey ends.
Since then, I’ve faced daily pain and complications stemming from my treatment. This doesn’t diminish my gratitude for being alive—far from it. But as any cancer survivor can attest, navigating life post-cancer is complex.
This is precisely where Health Secretary Wes Streeting’s recently unveiled National Cancer Plan for England misses the mark. The plan, introduced this month, aims for 75% of patients diagnosed with cancer to be cancer-free or living well with it by 2035, five years post-diagnosis. That’s an admirable goal.
However, the plan is notably silent on the matter of survivorship once patients are discharged. This omission is deeply frustrating.
It overlooks the myriad individuals, like myself, who continue to grapple with the physical and emotional repercussions of cancer and its treatment long after being discharged.
In my case, the heated chemotherapy known as HIPEC, directly administered to the abdomen to eliminate any lingering cancer cells post-surgery, caused my organs to adhere to one another with scar tissue. My intestines became tangled, and my bladder, womb, and ovaries ended up fused together.
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.