Stage 4 recurrent bowel cancer in my right pelvic area: how best to avoid disappointment?

Hi folks, 

Back in 2014 I had LAR which removed the tumour after chemoradiotherapy and up until March this year I have always been told I was NED. Advised if I reached 10yrs It would be disease free. However, it turned out to be stage 4 recurrent bowel cancer in my right pelvic area affecting most organs there. The most pain seemed to be from the tumour encompassing the sciatic nerve and lower spinal nerves. After 10 sessions of radiotherapy, which was originally declined, I am mostly pain free (odd twinges etc). I finished the radiotherapy just over 2 weeks ago and have waited patiently to see Oncologist about a course of chemo to stop any more progress. I expected a space from finishing one and starting the other, but so far I haven't received an appointment so far. 

I am normally a very positive person and my response to being told prognosis was likely 9-12 months simply took surgeon by surprise as I said to my wife (who is already dealing with a terminal cancer) think we better get partying fast. Even though pain is non existent now, I am starting to struggle when I feel twinges in my right flank and sometimes it is difficult to breathe, and my mind immediately goes to could this be the cancer spreading to my lung. 

At present I seem to spend a lot of time researching various trials and I have enquired from a few for the criteria to be included. I have this information for the Oncologist -who is excellent but not totally up to speed with all the various trials around. 

I think I need other distractions to stop me getting anxious - something I have never been troubled with before. Any positive suggestions are very welcome!

Many thanks, Paul

  • Hello Paul, 

    Thank you for coming here and sharing your story. It sounds like the radiotherapy had a positive effect and helped you be mostly pain free. I hope that you won't have to wait too long though for your chemotherapy appointment and that you will manage to find all the information you need regarding possible clinical trials you could apply for. I've given you a link on your other thread to our clinical trials database which may be of interest to you. Perhaps you could also give our nurses a call on this free number 0808 800 4040 - their helpline is open Monday to Friday from 9am to 5pm and they may be able to point you in the right direction and give you some helpful tips. 

    You're right to think of finding other distractions to prevent you from getting anxious - as you and your wife are going through cancer together, perhaps you could find activities that you enjoy doing together that will take your mind off  treatments and medical appointments? I am sure members of our community who have been through something similar before will have some good suggestions for you and I hope they'll come and share their story as it helps to talk to others who are or have been in a similar boat. 

    You seem to have an incredible positive energy and sense of humour despite everything you are going through and I just wanted you to know the forum is always here for you and your wife anytime you need to offload or talk to others who understand and who have been in a similar place before. 

    Best wishes, 

    Lucie, Cancer Chat Moderator