There is a lot written about survivorship in cancer. It’s an idea that sums up how life is never the same again for people who have had cancer. We might have finished our treatment but we may have long–term side effects. We might have “no evidence of disease” now but we all fear recurrence in the future.
I’m not sure that there is anything unique or special about survivorship in womb cancer; every individual’s journey is different and special and at the same time we all share characteristics with each other.
One of the first manifestations for me has been immediate self-diagnosis of any small problem. I’ve been told that my cancer will return – it is a serous carcinoma and was locally advanced when diagnosed; the surgeon was not able to remove all the tumour. But I don’t know what that means. Months? Years? When? Where?
So I am on hyper alert to any small change. A fluid-filled lump that appeared between my big toe had to be toe cancer. Oh hang on a mo, it’s athlete’s foot. An ache under my right shoulder blade was obviously liver cancer. Or could it be a slight muscle strain brought on by days of coughing? It’s a scary place to live and I repeat to myself a mantra given to me by the oncology clinical fellow at the hospital: common things are more common.
There are, however, some specific considerations in womb cancer. I had a total abdominal hysterectomy pre menopause, which meant I went through a surgical menopause. It’s like being run over by a train as the hot flushes hit full on with no warning. In its favour, it is over quite quickly – in my case in months rather than the years reported by some of my friends going through menopause naturally.
But the impact of the surgery and months of chemotherapy and radiotherapy have taken their toll on what I shall coyly choose to term marital life. I’m choosing this because it is symptomatic of just how hard it is for women to seek help. Even with everything we have been through and had to discuss with our doctors, we still struggle with the language to have frank conversations about our sex lives.
The menopausal changes are probably well known to you; what may be less well understood is the impact of the surgery where removal of the cervix affects the experience of orgasm and of brachytherapy (internal radiotherapy delivered via the vagina) that can shorten and dry out the vagina. Women who have had brachytherapy are issued with dilators to keep the vagina open. This is because the vaginal vault is a likely site for recurrence and needs to be inspected regularly.
The research literature tells us that regaining intimacy is one of the hardest parts of recovery for women and their partners. It doesn’t seem to be an area where the oncology team has the expertise or the capacity to support my husband and me. The patient literature tells me that this is a tricky area and that there are ways in which primary care can help. But I’m not ready yet to seek that help. It’s one difficult conversation too many for me right now so we struggle on, being kind to each other.
Like all cancer treatment survivors, womb cancer survivors struggle with our energy levels post treatment. I’m lucky in that I work for myself from a shed at the bottom of my garden but if I had a proper job and needed to commute, I would be looking to primary care for help in planning a return to work.
Those of us who have had lymph nodes removed (I had 31 taken out of my pelvis and para aortic region) are warned we might be affected by lymphodema.
I found this warning particularly worrying and had images in my mind of grossly swollen legs limiting my movement. I was lucky enough to get an appointment with a lymphodema nurse at my local hospice. She took the time to explain the risks, the realities, what I needed to look out for, how I could help myself, what to do and what not to do. I’m not to shave my legs, for example, as this increases the risk of a cut that could get infected and then I’d need two weeks of antibiotics. Is this generally understood in general practice? I don’t want to have to have that fight so I hope so.
What do I want from primary care? I think I would welcome a proactive reaching out to discuss how I am dealing with life after cancer. Just as important, though, would be to know that you understand how I have been affected by this experience. That I’ve lost confidence in my body and live in a place of fear, that my mild hypochondria is a manifestation of this. I’d like you to be kind.
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