This group has been fantastic......thank you for your shared knowledge and experiences.
Just wanted to share some of my experiences of treatment (abroad) and chemoradiation with a new stoma.
I have cancer in my anus, but my tumour is at the start of the rectum. It has spread into the fatty bit outside the rectum and gone into lymph nodes.
Prior to treatment I was unable to go to the toilet, lost over 12 kilos and was experiencing terrible pressure in my anus in the last weeks.
Surgeon suggested a stoma and operation was performed a few days later. Absolute life saver and I was able to get ready for chemoradiation mentally and also gain weight.
Date was set to start treatment and my radiology Dr was appointed. He explained all the treatment in detail and made it very clear I would feel pain and this was normal. He told me he was here to help and to come and chat if I needed anything.
No creams, no anti sickness tablets and no painkillers given out. If I needed something, he wanted me to come and discuss it with him.
Radiotherapy started and then the machine broke down, repairs and we got going again, a little late.
I travelled 3 hours a day down country roads for treatment, so my backside was in a lot of pain.
My first recommendation would be a post operation type cushion. Bought mine from Amazon and it really helped.
Creams, I was told none, but used Strata XRT. Expensive, but goes a long way. I am still using once a day post treatment.
I used the cream pre treatment, small amount and made sure it fully dried. I came home showered and used it again.
I did not have any painful burns until day 25. If I was applying again I would make sure I put it up to my coxicks.
At the weekends I also used a wound protection cream from the baby section in Lidle. Made by lupilu, baby bio calendula. I used to slather this on when my bottom was so sore pre stoma, did the same at the weekends and am still using now.
I also used QV cream on the rest of my body, twice daily.
After my 30 sessions I had burns and in 4 areas they looked like cigarette burns. From my anus to my coxicks was trying to split, but cream and epsom salts baths stopped it from happening.
I was nervous to do salt baths during treatment so I waited. If I had my time again, I would start on day one of treatment. I bought pure Epsom salts, they are also hyper allergenic....from Amazon.
I wore period hipster knickers and pads. From the first week the mucosa ran like a tap, especially at night. In the last few days that has reduced significantly.
In the first week of treatment the pressure reduced significantly. I had inflammation, edema and a severe stricture in my anus (hence stoma). Everything started to feel more relaxed. My anus has appeared again, it was so tightly closed I could not use a cotton buds to apply cream.
A small lump also appeared near my anus pre treatment, in the first week it disappeared. One of the cigarette burns at day 25 seemed to be in the same place. My surgeon told me it was likely to be cancer and he hoped it would disappear after treatment.
I had a chat with my Doctor after session 25 and the increased pain. Up till that point I had taken a few paracetamol to help me with the travelling.
He offered ibroprofen, they can upset my stomach so not keen. He them offered NASIDs, soluble as I had been suffering sickness and nausea. Again, I didn't want to take them as I feel they can stop wounds from healing. I continued with the occasional paracetamol and for me distraction has always been my way to manage pain.
The Doctor also recommended lidocaine. I used it a night and it took the edge off and let me get some sleep.
The burns and soreness are getting better each day and I am continuing with salt baths and lots of cream.
I think out of all the treatment the chemo early morning on a Thursday was the most nerve racking. Bloods taken at 7am, then wait for treatment. Cisplatin is very toxic and I had spoken to other patients who had had the treatment stopped.
I managed the full 5, my kidney's managed thank goodness as there did not appear to be an alternative.
After the first session of chemo I thought my head would explode, but it went away without medication. I felt sick after the session and it remained through the whole of the chemo. Ginger and mint teas helped, but by session 4 I was struggling to eat and drink and the 3 hour journey each day was a killer.
I spoke to the Doctor week one and he told me it was very normal. We had another chat week 4 and he prescribed tablets with clear instructions not to take for more than 5 days.
I read the side effects and didn't want to take any. I had my 4th chemo and took one tablet after the session, sickness eased. I took a further tablets on the Saturday and the sickness reduced significantly. Last session I took the tablet pre chemo, reduced sickness and one tablet on the Saturday.
I didn't take anymore sickness tablets.
Chemo and a stoma can be fun. Lots of liquid output, morning noon and night. I was up sorting out mucosa or emptying my stoma bag. It blew up like a wind sock on chemo days and was difficult to change due to loose output.
I used certain foods to thicken things and when that didn't work I took a couple of imodium week 4 and 5. My concern was I was not drinking enough, so imodium helped.
About a week after chemo I felt tired and needed more rest, but my energy and appetite started to come back.
During all the treatment I have tried to eat a balanced diet with lots of protein. A new stoma restricts my diet, but homemade soups full of nutrients have helped to get me through.
I new going into this treatment that I had to say mentally strong. A normal routine has really helped me do that. It didn't matter that I was slower, had to have a few rests.
I cooked fresh food each day, did some gardening, washed clothes and ironed. My partner would drop me off away from the hospital and each day I would have a little walk. I walked around the garden at night looking at the flowers and it made me feel normalish and in control. It's also my way of distracting myself when I am in pain.
Eleven days post treatment I work for a few hours, then rest for a few hours. Back on vitamins and introducing new foods to my stoma.
Not sure if this happens in the UK but at my discharge meeting with my radiologist Doctor I got to see my tumour pre treatment and post treatment. I was asking questions and he asked me if I would like to take a look on the computer, I had no idea they took new images each day.
So not surprised I couldn't go to the toilet pre treatment, the tumour had totally blocked my rectum. It was a big black shadow with a tiny gap. My last session the tumour was dying, holes were appearing and it was like a cloudy sky. Again around the fatty tissue was becoming cloudy. Even my untrained eye could see a difference.
It was nice to see a change, but I still have a long way to go before I am out of the woods.
Wishing everyone the very best day possible.
Ally xxx
Hi AllyL ,
Thank you so much for sharing this account of your journey so far, it made for interesting reading, it’s always interesting to read how people’s diagnosis & subsequent treatments are managed in other countries because as Irene has already touched upon even here in the UK it can vary from hospital to hospital & even consultant to consultant.
The first time I visited Bulgaria was approximately 32 years ago & outside of the newly built holiday resorts I was struck by the overall poverty so I’m really pleased to hear that the hospital facilities & the medical care you have received have been so good.
I hope you get to see someone soon concerning the lung nodule & issue with your urethra & they can offer a solution to both.
Sending lots of healing thoughts your way for your continued recovery. Please keep us updated.
Nicola
