I don't know your location but my hospital was in touch with one in Harrow for specialist advice on how to proceed. Perhaps they can advise you or your team too.
It took time to plan and I had three teams of surgeons on the day.
Visit the website and read the Complex Cancer Clinic info which you will find under Services at the bottom of the page.
Infact weve sought advice from about 5 hospitals and awaiting response.
My husbands situation is that he has chronic partial bowel blockage, which became a total blockage every time he had chemo. So every 2 weeks he was in hospital.
His bowels are so noisy it sounds like a cross between a waterfall and a washing machine. It wakes us up
But because he had liver mets, unresponsive bowel tumor and Ras mutation he was deemed inoperable and untreatable - until yesterdays MRI scans.
So, any hospital prepared to operate/treat will have to carry out extensive surgery.
He has colostomy now, but his bowels are all stuck together.
Surgeon didnt remove bladder initially. He cut off what he thought was cancerous and in doing that perforated the tumor - both actions have a bad prognosis for recurrence and mets (which is what happened).
If there is cancer on his bladder, or his ureter/kidney that might be removed too.
How are you copying mentally and physically after your operation. Six months is not a long time ago. Have they removed all the cancer?
Have you needed chemotherapy?
And the swelling in your legs must be very uncomfortable. Will that improve in time?
Are you managing to walk short distances now. What is your target distance.
And are you glad you went ahead with the operation because weve had an oncologist advise not to have further treatment and "enjoy your last months". Thats easy for someone else to say. Hes only 50 with no health problems at all (apart from palliative cancer!). I think everyone wants to fight whilst they have strength and hope.
I had my surgery in March 2020, and yes, have a colostomy and urostomy. Because my cancer was different, I have not required grafts and have chosen not to have reconstructive surgery. I used a frame for walking afterwards, and then a stick. I still need a stick to walk any distance, but I don’t have lymphoedema.. Recovery takes a long time, and I found I was utterly exhausted initially. However I feel physically very well indeed now. Good luck with your recovery-you do need to take it slowly.
The last PET scan about three months ago was clear. I then had chemoradiation.
I don't think the swelling in my legs will improve because the lack of lymph nodes stop the fliud from draining when I am upright for a while. They gradually go down over the next few hours when I put them up . I don't walk as much as I used to as I get tired as they swell, so its a short walk around the supermarket at the moment.
Yes I am glad I went for the operation - its been a long journey and I am in pain but for now at least I am here.
How long was it before you felt recovered? Are you still in pain?
I get annoyed that I still can't do as much as I used to.
Going out gets a bit scary - the colostomy bag once came unstuck and it ended in a mad dash to the loo. Do you find it best to wear jeans or leggings to keep the pouch snug and give it some support?
I am not in any pain at all, I’m glad to say. Recovery happens very gradually in my experience. I started to feel better 6 weeks out from surgery but I was told by many people who had been through this that recovery would take up to a year, which I think is a realistic assessment. I still get tired easily. You are not really far from surgery, and there’s a huge amount of internal healing to do, so try not to be frustrated that you can’t do everything you expect. You are very lucky if your colostomy bag has only come unstuck once-that’s still quite a frequent occurrence for me, and I still try different bag types in an attempt to find the perfect one, if it exists!
I don’t find jeans comfortable to I wear leggings and make sure I have comfortable underwear!
