Glad to hear you are still clear and managing the side effects. I have recurrence near the same spot, plus lymph nodes. Nearly made it to two years and was feeling quite relaxed about the follow-up scans, which had all previously been clear. Next treatment is surgery which will involve removal of anus and rectum and permanent stoma. It's not guaranteed to be permanently successful but there is no other viable option, so I'm told. Phone appointment Monday with more information I hope. I think of you too ... View more

Hello again, I've had a recurrence just inside the two -year mark when I was feeling more relaxed. Was wondering how you were going ... View more

Hi Heidsta Fusing sounds horrendous, I'm so glad to hear you are now past that! I had the same chemo drugs as you but maybe less of them as my only hair loss was pubic, which I do hope grows back. Hard to tell if it's just general swelling or lack of hair protection over sensitive skin that is creating the discomfort - probably a combination of both. I'm feeling much less pain and fatigue now, which is a pleasant surprise however I can still feel the tumour and hope that it will eventually disappear. Did you have this experience of still feeling the tumour post-treatment?  It's so nice to connect with someone who understands.  ... View more

Thanks for your quick response Heidsta. I had chemo pump for 96 hours, weeks 1 and 5 of treatment. Family are coping okay: one daughter is taking her teddy to school every day and the other insisted on a phone call every night while I was away. Hubby is very supportive, although is also coping with his own drought-related mental health, fortunately now managed with medication. I haven't experienced fusing - not really sure what that is tbh. I'm using 'numit' cream on sore spots around anal and perineal area. Haven't heard of strata gel. Also using bepanthen cream and moisturiser on groin. I was at the Tennyson Centre in Adelaide which has a cancer support service 'Lift' in the building and included a gym so I went there every day for exercise - including some pilates/pelvic floor exercises as I'm very concerned about sex life post treatment/recovery. All gym clients were cancer patients so everyone was somewhere along the treatment continuum however none with anal cancer that I met. I also saw a dietitian at Lift and am trying a low fibre diet to help with bowel movements. Also taking gastro stop.  I hope your biopsy is clear, sounds like it should be after a clear PET scan. I had treatment to the anal tumour and both groin lymph nodes, one of which looked 'suspicious' although PET scan showed no metastasis, so not as extensive as your treatment which sounds horrible. Unfortunately I was misdiagnosed in November and January (despite having a history of abnormal cervical cells in my 20s) before correct diagnosis in April which was frustrating. Although not as frustrating as wanting to scratch my itchy bum crack but not being able to! I've also been using labour breathing as a coping mechanism. Hair loss is also its own kind of discomfort and I hope the burns on my groin fade over time. I live on a farm on Eyre Peninsula, SA but have family at Byron Bay. Thanks again for your reply, I was really hoping to find someone (preferably in Australia) who could understand the experience. ... View more

Hi, my story is similar to yours (and my age) and Hi, I was wondering how you are going now? I’d like to get an idea of what I might expect over the next few weeks and months. I completed the 30 day chemo radiation treatment on Friday and am now back home with my family - husband  and 8 year old daughters living at home and adult son and stepdaughter  in the district. Lots of community support but I don’t know anybody who has had anal cancer that I can talk to. Did your side effects increase post-treatment? Have your skin and bowel movements gone back to normal? What scans/investigations  did you have and how long post treatment? Any information appreciated ... View more