Hi, my name is Clare and I am from the UK. I was diagnosed with anal cancer in March 2011 aged 43. I was having some bowel trouble and thought I was constipated and had piles. I brushed it off till I started passing a lot of wind and leaking a bit of diarrhoea at the same time. I googled symptoms and saw bowel cancer… it's ok, I’m not bleeding. Oh right so I’m bleeding, at least I’m not losing weight, oh right I’ve lost weight .. denial, denial… I waited six weeks and then went to see the GP. She said, “Oh, you’ve probably got IBS. I’ll send you for a sigmoidoscopy to reassure you”. Two weeks later there I was with a camera up my bum and the doctor saying that’s abnormal; stay positive, they can do a lot with radiation these days. Ah, that must be cancer then. More scans and tests and eventually I was told that I had squamous cell anal carcinoma with possible spread to liver and lymph nodes. I wasn’t told a stage but asked after treatment. Stage 3A (T4 tumour). The consultant told me I had had a ‘hefty’ tumour. They did more scans and tests and said they were not sure about the liver and would keep tracking it.
I was so swollen and sore by the time that I met the docs for a treatment plan that they decided to give me a colostomy to get me through treatment. At first he said it was up to me but if I didn’t do it then I would be hospitalised by the end of treatment as I wouldn’t manage. I said, "oh go on then" and he got out his mobile phone and phoned up the surgeon there and then! A week later I had my colostomy and then a week later I had a PICC line inserted just after being discharged from hospital and started combined chemoradiation. I had mitomycin C injected on the first day and then a pump of 5FU attached to the PICC line for five days. I hated the pump as it was in a bum bag round my waist and with the colostomy healing as well, it was all rather awkward, but 5 days pass quick enough and it was off. I also had daily radiotherapy for 28 days and another pump of 5 FU for 5 days in the last week. I danced a little happy dance when they took that PICC line out!
The colostomy relieved the pain almost instantly and I could sit down again for a while. The chemo made me feel nauseous and off my food and I didn’t eat much. My partner cooked and put it in front of me and then I couldn't eat. Thinking about food just put me off. The radiation slowly affected my skin and after a couple of weeks it was itchy and red and then it started breaking up and burning off. By the end of treatment, I had raw skin in the groin and folds at the front and around my bum at the back. Lots of creams, ointments, gels and pain killers and a bottle of morphine got me through that last week or two that were tough. I only cried once thinking, "I can’t do this" towards the end of treatment but then my friend came to pick me up for my radiotherapy and made a joke and all was ok again.
I decided to be positive and get on with it and laugh and joke my way through it. People said I was brave or inspirational, I just thought, "well what are you to do? Go to bed and wait to die? Or get on with it". My brother sent me bum jokes incessantly. They made me laugh. Bummer, you must be gutted etc. I joked and laughed my way through it all.
My family was lovely. My mum died of cancer so it was a bit like oh no here we go again. I did assume that was it and I would probably die quite soon. I remember asking the specialist nurse what happened with treatment and she took me through it and I said then what? And she said recovery. Oh, maybe I can survive this then and the consultant said we are aiming to cure you. So, here goes.
I thought it was early stages and I’d be up and back to work in no time. I was wrong. It wasn’t that early and it took me a lot longer than I thought and a reality check on the way. I guessed five weeks radiotherapy, a week to get better and then back to work! I struggled with fatigue afterwards and then had to have the colostomy reversed which the docs didn’t think would work but it did! I am left with sensitive skin, an early menopause and osteopenia and my bum isn’t the best functioning, but I teach full time, go to the gym for my bones and swim and go on holiday and do anything I want pretty much.
I see cancer as a positive thing in my life. I don’t regret it for one second. I was cross during treatment when people kept saying, “Oh you get it for a reason, you’ve got something to learn”. I kept thinking when is the big revelation coming? It took about a year after for me to realise I had completely changed. I am lucky as I was given a second chance to see what life is really about. It’s not fussing about work and things but family and love and the small things. Life is right here right now and not something we are getting towards… one day when I’ve got enough money, when.. when…. But now. That feeling the grass between your toes. Stopping to look at the mist on the hills. The ladybird on the twig. Wow. We miss all these moments rushing towards something we never get to. Wishing our lives away. I live in the moment. I am no longer a workaholic. I spend time with my son. I hang out and giggle and do things for other people. Giving someone your time is more precious than anything. If I get stressed about stuff I think but I might not be here next year…. and then it goes. Not in a morbid way, but in a way it doesn’t matter if that person is annoying or bullying or if that policy is implemented really does it? I am here and my family are here and the clouds are beautiful today.
Cancer messes with your head. Big time. Even positive, laughing me has struggled to get my head round it. I joined a support group and I needed it. Don’t go it alone. Ask for help. I learned that too. People like to help, it makes them feel useful and if they are doing something because having cancer makes them feel helpless.
Each check up you get scared and wonder is this it? And the good news is just a shock as bad and it takes a day or so to get your head round it and then off you go on your path again for a few months…so allow time for quietness and inwardness too. I think we need it.
I am two years now since diagnosis. If you are in the early stages, treatment can be fairly easy to get through, the later stages like me it can be harsh, I won’t pretend otherwise, but it is relatively short and it can be done and it is so worth it and it is so effective.
So, don’t be silly like me and stick your head in the sand and not want to bother the docs, go to the GP as if they get it early enough its really curable. I am still going strong with innumerable lesions on my liver, a nodule on my lung and inconclusive lymph nodes (they now think they are benign but keep scanning all the same).
I was lucky that we have a specialist cancer hospital near us and a consultant who knows all about anal cancer. He knows what he is doing and the hospital is great. The local hospital where I had my colostomy done is lovely too and again a great surgeon who is an expert. I am lucky.
I don’t know about HPV and me, they never said but the first smear test I ever had was abnormal. I had a loop colposcopy for abnormal cells in my 20s so I am sure I have it. I didn’t know about stigmas or anything like that. I know that the word anal is one some people are embarrassed about but I didn’t know about stigmas attached to this type of cancer. No one has ever said anything to me like that. I did have one person say couldn’t I just say cancer as anal was embarrassing so I told them I had arse cancer instead. I sometimes say ‘in my bum’ if people look shy about it.
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.