Newbie

Hi All. I have just been diagnosed with rectal cancer. I don't have all the details yet. Monday we talk with the surgeon and devise a plan. I would be interested to find out what you are doing for the pain, what foods you tolerate well and can process and the treatments you have received and would you do it again? Thanks in advance. 

  • Hi , mine was rectal, so hopefully I can help once you know what's going on. I didn't really have pain, and was on a low fibre diet before the op. I went straight to surgery, and though low in the rectum, didn't need a stoma. The join worked! You do get marked up beforehand so you have some say in where, so don't panic! 15" of bowel/rectum was removed, with 40 nodes. All were proved clear, though the scan had one suspect one. However the nasties were in the blood vessels, called vascular invasion, the V on the staging. This meant I was recommended chemo, which was 5FU weekly for 30 weeks. A struggle but I got there.

    Would I do it again? The operation was easy, chemo got cumulative. However I'd rather do chemo than the long covid I'm left with after catching covid a year ago, a couple of months after chemo finished.

    Take care, stay safe

  • Thank you for responding. I have a rather personal question. How did you sit down. Sitting is very painful for me. I've tried everything I can think of.

  • Hi . Hope today’s meeting goes well. I’ve attached a booklet which you might like to have a look at to give you a quick heads up. I had rectal cancer - 9cm in from my anus. I had chemoradiotherapy to shrink it, Surgery with temporary stoma, chemo then stoma reversed. If you click on my name then you can see my background but don’t be put off by the hiccups - most people don’t have those problems!

    I was lucky enough not to have any pain so please discuss this at your meeting as they should be able to help you. A low fibre diet is recommended before surgery which looks a bit unhealthy but is easy for the bowel to deal with. 

    Would I do it again? Yes. I don’t really see that I had any choice as it was the best way to get rid of the tumour and hopefully prevent any reoccurence. 

    https://bowelcancerorguk.s3.amazonaws.com/Publications/YourPathway_BowelCancerUK.pdf

    https://bowelcancerorguk.s3.amazonaws.com/Publications/EatingWell_BowelCancerUK.pdf

    Plesse let us know how you get on

    Take care

    Karen x

  • Sorry for delay, lost broadband!! I didn't have any real pain, so sitting wasn't an issue, sorry I can't help. Maybe twist a towel into a loop/circle so there's a hole in the middle to take the pressure off? Bit like sitting on a loo seat!?

  • Karen x thank you for your response. It helps knowing that I am not the only one. But so sorry for your pain. 

  • Germany I will try the towel idea. Thank you.

  • Hi BobbyV. I have just finished 28 days of chemo/radiotherapy for rectal cancer abd I now have the 8-10 weeks wait for inflammation to clear before I can have a scan. 
    I didn’t have any side effects for the first 3 weeks but, come week 4, the fatigue struck and I started to become very sore so started taking paracetamol every 4 hours. By week 5 I was prescribed morphine for the soreness and advised to bathe my bottom in warm salt water. 
    I am vegetarian and was used to a high fibre diet but found this aggravated my vowel during treatment so I had to switch to a lower fibre diet. I am hoping to slowly return to my old diet now treatment has ended. 
    Although tough towards the end of treatment I would do it all again, and just hope I get the results I want once I have my scan. 
    I hope your appointment with your consultant went well. Please let us know how you get on. 

  • I don’t know if it will help you or not but when I had my coccyx removed I had a thing called a valley cushion. It helped me a lot for the pain.