Anal cancer is a cancer where terms like pee and poop are talked about often and openly so prepare yourself to let go of any feelings of embarrassment. Life is what matters, Not where our cancer is located or the process of treatment or recovery.
Looking back, I was getting tired from around November/December 2016 which was not normal, falling asleep on the sofa, bloating and wind which was new and started maybe even months prior to that.
January 2017 – Aged 54
Thought I just had a haemorrhoid so treated it with suppositories for over a month or so but it didn’t seem to be reacting like a haemorrhoid but still ignored it.
February 2017
Symptoms presenting:
After husband saw one of the haemorrhages he and his mother and sister nagged me to get it checked. I made an appointment with my GP the next week. – This visit is what will save my life!!
Visited GP who examined me and sent me for an emergency sigmoidoscopy, which I had 10 days later. I Didn’t think to ask why, just went, had no thought of anything sinister wrong.
The Dr who did the sigmoidoscopy was unable to remove what he thought was a polyp due to the location as it was very low down in the anal canal and the bleeding made it hard to see. He took 3 biopsies and said it looked to be benign. – 10 days later I had a call to say sorry but they had found squamous cells and I would need chemo and radiation.
Being told you have Cancer messes with your head. Big time. Even positive, laughing me struggled to get my head round it.
An appointment was made to see the surgical colon specialist 2 weeks later. After examination, he said he would not be removing it surgically and it had been there sometime. I would need an MRI and CT scan to check it had not spread anywhere else. I would be referred to the Oncologist at the specialist cancer hospital and would undergo 5-6 weeks of chemoradiation therapy. I was told my GP had put Cancer on my referral and that was why I had the sigmoidoscopy so quickly and hopefully at an early stage.
MRI and CT were done within 2 weeks
Called specialist Nurse 21st March to find out that MRI and CT showed no sign that it had spread. And the MDT had now referred me to the oncologist at Velindre hospital Cardiff.
Waiting now for oncologist appointment which should be within 2 weeks. Have an appointment with Surgical consultant on 29th to formally go over my scan results and next steps when I get my Oncology appointment,
22nd March – The heavy aching feeling drags you down as does the fatigue and bloating and pain from trapped wind. The waiting adds to the stress, it’s all the not knowing. I am now at the stage I just want to get on with it.
24th March – ordered a Boneyparts sero pressure cushion to help with sitting at work should be here by Tuesday 28th, here’s hoping.
27th March – had a good day today
28th March – Cushion arrived, it does help a bit but I can see it will help a lot once the radiation reaction hits.
29th March - Saw colon surgery consultant, he confirmed that the cancer was Stage 2 (T2). The scans showed no sign of it having spread but he was still not going to surgically remove it and it would be Chemoradiation therapy.
30th March – Phone call this morning from Mr Shaw’s secretary (the oncologist) , I have an appointment with him at the Velindre Wednesday 5th April at 15:45. So another week to wait ☹, but on a plus point at least I have an appointment so things moving along.
Bum jokes and the like have kept me going so far and I’m sure there will be loads more to come from my friends. I do think laughter will get me through this.
1st April – Gafter party night with my Panto Family… we got the elephant in the room out first… the C word was bought up and beautifully managed and done by Paul, Julie and Andrea. A present for myself and my husband of a spa treatment for when this is all over. I have every intention of being back on that stage in December… rehearsals start August so fingers crossed.
4th April – feeling a little down and emotional today, not sure why but close to tears but keeping them back. ☹. My wonderful husband texting to check I’m ok and keep my chin up helps.
5th April had my date with the oncologist. Examination told him it was a fairly large tumour and he was unconvinced it was contained so arranged a PET scan to be done.
Within a week had my scan arranged, and unfortunately it showed the cancer had spread to my lymph nodes. I had my planning scan for the radiation treatment and it was boosted to allow for the spread, now stage 3 with Nodal involvement. Think I have been through the shock, now going through acceptance.
Start 28 sessions of High Dose Radiation on 2nd May, with 2 x 4 days of Chemo attached to a pump via my Pic Line.
I finished work on 28th April ready to start treatment. A hectic schedule of 2 rounds of Chemo along with 28 sessions of Radiation over a 5-6wk period.
Day 1: arrived for my Chemo pump to be attached, cant lie I was quite scared of it all, the unknow, but it was fine, and then straight off for my first session of radiation. I had my son with me who was very supportive and curious.
Week 1 -2: all going ok, then I start with the ulcers in my mouth, down my throat and a hacking cough. At my weekly review, my bloods show my neutrophil is under 0.3 and my white blood cells at 0.4. They decided to admit me as I had nothing to fight any infection. I spent 5 days as an inpatient and underwent a blood transfusion, copious amounts of antibiotics and forced to eat when you really can’t even swallow due to the mouth/throat ulcers. To say the least didn’t expect to feel as low and “crappy” as this so early on. I went home and pulled myself together and told myself to get on with it.
I am determined to take myself in each day, the 40-minute drive keeps me sane and allows me some form of normality.
Week 3: the burns start to kick in, so sore can’t even wipe my bottom, use the shower to clean myself. The nurses give you creams to help and I’ve started on the Co-codamol for pain. Even having a pee is so painful you feel like passing out. I hide the pain from my husband as i know he is finding it hard already dealing with and seeing me in pain. I get back from treatment every day and just fall asleep for a few hours, it just hits you out of the blue.
Week 4: My skin is ulcerating, can’t wear any underwear as the creases in my legs are just so sore and the skin falling off. My hair is falling out in handfuls too. Now on oramorph to help with the pain. Can sleep or get comfortable.
Week 5: Time for another week of Chemo. My oncologist decides to half my dose as the reaction I had the first round was so severe on my blood the as my skin ulcers are now open wounds I could be susceptible to sepsis with nothing to fight it and the prognosis of that is worse than the cancer. Still losing a bit of hair, it’s very thin and the odd bald patch too, so my hairdresser husband decides it time for it to come off. He didn’t shave it all off, just cut it very short.
Week 6: June 9th , finally, all the treatment has been done. My skin is peeling off at the tops of my legs, my vagina looks like a burst ruby ball that a dog has had a good chew on and my bum looks like a baboon. but I’m still here, I’m still coping. The last 3 days I was unable to drive so my Husband had to take me to treatment, the first time stubborn old me had to give in and admit defeat.
Week 8: I started to use the dilators given to me by the specialist nurse. You think it’s a bit of joke when you first talk about your vagina getting smaller and tighter, believe me it’s no joke. As my husband said, “you would not even get a pepperami up there now”. Its painful using them but if I don’t the scar tissue will fuse together and then there is no chance of getting any sort of sex life back. I have only been married since November! but I have a loving husband. They don’t talk a lot about the vaginal stenosis, not enough information out there of the damage the radiation really causes, except on forums from survivors. It makes you feel less of a woman… quite down and emotional about it. People say it doesn’t matter not having a sex life, but I think it does, I want to be a wife not a sister.
Week 10: review time, skin still really sore but healing well. My hips and lower back are hurting and i am stiff and less movement at the top of my legs. Told I will probably at some stage need a hip replacement due to the damage to the bone and loss of bone density.
July 2017: Review again and my oncologist examined me to find he could not feel the tumour so positive result there, but until we have the scans nothing is sure. Feeling like an old woman at times, joints still and still having loss from my vagina, assume it’s the scar tissue and the dilators seem to move it around and make it worse.
MRI & CT booked for 29th August…
It’s hard you hope it’s all ok, hope the treatment has worked but my journey has been a roller-coaster, haemorrhoid, to non-cancerous polyp, to contained cancer, to cancer that has spread. My emotions are still high but I’m holding on. I’ve gone from Shock to acceptance, to anger during this journey so far..
I’m sure you ladies want to know as we know there is not enough information regarding the vaginal stenosis:
Well after 7 weeks post treatment we managed to have sex of some sorts, it was painful and finding the right angle was hard. my vagina has gotten shorter and a lot tighter, we managed an inch lol. I don’t think sex will ever be the same again but there is light at the end of the tunnel so to speak that some form of physical relations will be possible in time and patience. I am lucky I have a husband who loves me and is not rushing this.
10 weeks post treatment and with a combination of dilation at least 5 times a week have managed to try sex once a week with its getting better every time. Still painful but as they say no pain no gain.
Hit 55 on 5th August so made it to another birthday
29th August – Had my MRI and CT scans today to see how if the treatment was successful… felt quite emotional, I suppose due to the fact that this will tell me if the cancer is NED, the downside is my oncologist and specialist nurse are on holiday from Monday so I have to wait until the 20th September to find out my results… hay ho whats another 3 weeks waiting.
20th September – given the all clear - NED no evidence of disease. will be left with the weak hips and stiffness in the pelivis region but I can live with that. The occasional accidents with the bowels will hopefully get better, pelvic floor exercises need to start lol.
5 years countdown begins.
When you go through something like this you realise how precious time is, how fragile life can be. Don’t waste a moment.
I have been through all this But I am a Survivor.
I am a Cancer Survivor!!!
