Hello all.
I have a history of cancer (hysterectomy plus tubes and ovaries removed in 2011), had VAIN cells removed regularly in the following years and was then diagnosed with vaginal cancer in August 2022. I had the tumour removed and commenced radiotherapy and chemotherapy in early November, completing on 23 December 2022. Due to pain and discomfort I was unable to use the vaginal dilators, my oncologist confirmed excessive scar tissue build up over the years was the cause. She confirmed I did not need to continue with this, she would examine me via scans for future check ups. I now find myself one year post treatment, having had the all clear via scan for the third time. I’ll be getting checked 3/4 monthly for a few years.
My problem is three fold. My treatment has also affected my bowels (scar tissue at rectum) so I am in a permanent state of ibs. I feel tired and lethargic all the time. I have also gained nearly 2 stone in a year and suffer from continual bloating and gas. Oncologist is not concerned by any of this, advising me to change my diet and exercise more. I have no energy to exercise and changing my diet has not helped.
I am depressed, not because of the cancer, but because of the side effects. I feel fat, old (62), frumpy, sorry for myself, tired and frightened to eat out of the house in case of accidents.
Thanks for listening. Needed to rant ……….
Hi Scotslass
I hope you do not mind me replying as my cancer was endometrial but I did have some of the same treatment as you.
My hysterectomy was in April 2022, I then had chemo and then pelvic radiotherapy.
I understand that the side effects of treatment can be tough to manage. I have neuropathy from the chemo and my bladder and bowel have never returned to normal since the radiotherapy.
I would also liken my effects to IBS. It's not great but I do try and manage it day to day. Dietary changes have helped me but its taken a year to find out what I can and can not eat and to feel confident to go out and do things. Dairy and fibre seem to be a big trigger for me. I am also now lactose intolerant.
I haven't put on weight, in fact have lost a fair bit but I think that is having the restricted diet and trying to eat at regular times. I also walk daily. I find the only thing that helps the IBS type symptoms is to have a really regular routine, eating, toilet, exercise. Once a come off the routine then things flare up again.
I found PRDA helpful, it may be worth having a look. Pelvic Radiation Disease Association (prda.org.uk)
I have managed to use the dilators regularly but I suppose in a way I resent them. It's just a reminder along with everything else of what cancer has done. For me the treatment side effects will always be a reminder.
With the tiredness, I found it was a good year until it improved. My consultant said chemo can affect you for a good couple of years. I still occasionally have to have a lie down if I do too much.
I am sorry to hear of your cancer journey and the lasting side effects of the treatment. It took me a long while to start to feel better and it was very much little steps.
I will pop a link to some more info that may help.
After treatment | Macmillan Cancer Support
This is a link to a blog I wrote a year after my treatment finished. Sometimes it helps to feel that you are not alone in how you feel after cancer.
Life One Year Later- Jane’s story - Macmillan Online Community
Hope this helps a bit.
Jane
