My name is Jan and I live on the outskirts of London, in the United Kingdom.
Some time in March 2009, I sat in a supermarket café reading their free newspapers and came across accounts of Jade Goody’s tragic death. The thought flashed across my mind that maybe the two small lumps that had been in my anal canal for a couple of years could be cancer. I brushed the thought away as too scary and way-out to even think about and went back to work.
In February 2011, I was diagnosed at stage 3B anal squamous cell carcinoma. Those small lumps had forced their way through my abdomen, forming tumours in the soft tissues and across two sets of lymph nodes – the inguinals and the internal iliac nodes. Sometimes people ask me why I took so long to get the lumps checked. It’s true I left them for a long time. They were small and, although sometimes they itched, I knew nothing of anal cancer and its symptoms and had been treating them with haemorrhoid cream. Until Jade Goody, the thought of cancer had never even crossed my mind. Later that same year Farrah Fawcett died of anal cancer. The spectre of cancer raised itself again. I checked out her story and found she described lumps very similar to my own. I couldn’t believe it. Shock waves swept through me. I went to my GP.
It took almost 18 months from that first visit to my biopsy and diagnosis in February 2011 because neither the medical staff nor myself could believe it was anything serious (they thought it was skin flaps) and nothing was hurried along – the biopsy was delayed because of holidays, my cough and then the loss of my notes. But a few days before the biopsy, I found a lump in my groin. I filled up with horror and terror as I allowed myself to imagine that this could be a cancer that was spreading. And of course it was. When the consultant finally perched on my bed and said, “I’m afraid we found something much much worse than skin flaps,” I wasn’t even surprised.
People often describe a roller coaster of emotion as you go through diagnosis, treatment and its aftermath. I would describe it as a roller coaster with no 'ups' or at least with the ups about as high as a normal day used to be. It took two months from diagnosis to the start of my treatment because of the battery of tests I had to go through – some of which were repeated. The tests ensured that I did not have metastasis and that I received the appropriate treatment. Every twinge, every ache I imagined to be symptoms of the cancer spreading. I would get up in the night to google different types of cancer symptoms depending upon where I had felt a twitch that day and would collapse in heaps of tears every 15 minutes or so. My greatest hope was that I would live to see my 14-year-old daughter reach her 18th birthday.
Finally I got to see the consultant oncologist at my hospital in Edmonton who would be overseeing my treatment. From the start I had great faith in her because she was straightforward, honest and not unduly optimistic. Of course, by then I had googled everything I could about anal cancer and found the support websites (which, together with my partner, helped keep me sane).
Treatment was 28 days of radiotherapy with a week of chemotherapy at each end. One chemotherapy was given only once at the start of treatment, but I carried a pack on my arm, which dripped the other therapy through a PICC line into my heart slowly over the course of a week. I hated the chemotherapy – not so much because of side effects (I had very few and even got to keep my hair) but because of the very obvious message that I was receiving cancer treatment and the psychological impact of watching as a purple poison was slowly dripped into my body. The radiology department and its staff were fantastic. The nurses helped me a lot too – cooing over my backside and telling me I was doing well!
It worked. Today I am nearly two years post-treatment and cancer free. I have been having examinations on a two-monthly, then three-monthly basis and CT scans on a six-monthly basis, which will now be reduced. I can’t pretend it was an easy ride – it was a relatively short treatment time and a long slow recovery. After treatment, I lived in fear of having a recurrence. My anal canal lumps disappeared quickly – my inguinal lumps shrank slowly. My first scan (at about ten weeks) showed everything was nearly gone – it took a while longer to decide it had all gone. My new normal is to take one anti-diarrhoeal tablet a day and to use a lot of talc on my bum (because of the changes to the skin). I also suffer from flatulence problems which can be a source of major embarrassment especially in my new job and my new choir!!! My daughter has had the HPV vaccine for cervical cancer. My consultant is now smiling.
My daughter is 16. Am I going to make her 18th birthday? I think so. I know so.
Looking for someone to talk to about your anal cancer diagnosis? We are here to help. The Peer to Peer Support Program is a free service provided by the Anal Cancer Foundation that matches anal cancer thrivers (our word for survivors) and caregivers with thriver volunteers and caregiver volunteers.