#WombWednesday: Suffering in silence

September is Gynae Cancer Awareness Month where we want to raise much-needed awareness of the five gynaecological cancers. However, every Wednesday throughout September we will be profiling a different issue around uterine (or womb) cancer in the form of #WombWednesday.

Eve champion Daloni Carlisle, who was diagnosed in 2014, feels that every cancer patient fears recurrence, and argues that preventing cancer would also ease this secondary suffering in our second part of our mini-series of blogs for #WombWednesday.

“There is a kind of madness that descends on every person I know who has been through cancer diagnosis and treatment. It’s the tendency to see every ache, pain, lump or bump as a sure sign that the cancer is back.

I’ve been a victim to this myself. Shortly after the end of my treatment for womb cancer in 2015, I investigated an itch between my toes and found a strange blister. Aaargh! I have got toe cancer.  I didn’t even know there was such a thing. Quick! Google…

Luckily I stopped myself calling 999, 111 or any of the other numbers via which I might talk to health professional and had a think. Um, not so much toe cancer as athlete’s foot.

Constipation? Obviously it’s back in my stomach. Or maybe colon. Or is it a new primary? Is this bleeding I’m having when I go to toilet a sign of new secondaries up my bum? Or could it possibly be piles?

It’s hard to get across just how jolting these brushes with recurrence can be. I know I am not being rational, but somehow my rational head falls off. I have to give myself a good talking to every time it happens.

It’s a symptom, I think, of how a cancer diagnosis knocks your confidence. My symptoms before diagnosis were common – most women who experience heavy or unusual vaginal bleeding do not have cancer.

So it was a shock to find that in my case, it was cancer. And an aggressive one too. I felt my body had done the dirty on me – it had let me down quite spectacularly.

Months and months of treatment during which I never went longer than three weeks without seeing the inside of a hospital left me battered and unsure of myself.  Chemo and radiotherapy do odd things to your body.

And then the post treatment limbo. “Are you in remission?” people would ask. The short answer was yes; the appropriate response a cheer or a smile and swiftly moving on. But beneath the surface there was the fear of recurrence.

Doctors don’t seem to be too good at explaining what recurrence might look like. I asked one locum consultant to be more specific. “Any unusual symptoms that last longer than two weeks”. Eh? I didn’t find this advice tremendously useful. My immediate thought was “meanwhile, in real life…”

The most helpful doctor was the one who picked me up off the floor when I decided that constipation was in fact a sure sign that I had developed secondaries in my gut. She ruled this out and told me: “Remember. Common things are more common.” It has proved a useful mantra.

This fear of recurrence is universal in people who have been through cancer. Most women with womb cancer are diagnosed early and completely cured with surgery alone – and that should be a good news story. Recurrent womb cancer in women diagnosed with stage 1, grade 1 (early stage, slow growing) is very rare. But the facts don’t stop the worry about recurrence.

When the cancer did recur, I didn’t feel a thing. Not a sausage. It was picked up by a routine scan. In fact I have never had any symptoms from any of the multiple secondaries that pepper my torso and have watched in fascination as scans have tracked the impact of various treatments and drugs on these unfelt lumps.

Those of you reading this who have been through cancer will know what I am talking about and understand how frightening these phantom recurrences can be. Those who have not – well, please do not mistake my attempt at humour as an attempt to minimise this phenomenon. It is real and it is debilitating – and it is hidden. Very few people see this cost of cancer.

It is also one more reason why I support The Eve Appeal. Preventing gynae cancers would prevent women like me needing treatment – and of course that is the primary aim. But it would also prevent this secondary suffering.