Hi all.
A quick summary before my question.
I was diagnosed with stage 3 rectal cancer in Dec 2021.
Next few months was a whirlwind of appointments, operation for a temporary stoma, which ended up being permanent and radiotherapy along with capecetabine tablets. Apart from some expected fatigue and neuropathy all went well.
Then I started my capox treatment. That didn't go so well and was stopped after only 3 infusions as my body was shutting down. I spent weeks on a hospital ward while Dr's tried to stabilise the multiple issues caused by the chemotherapy.
I was told that despite the damage done, the chemo had done its job and the cancer was gone. Nothing was further from the truth.
During a routine colonoscopy it was discovered not only was it not gone but progressing aggressively. Surgery was now the only option, however the damage done by the chemo meant I was extremely high risk. So began a year of treatment trying to get me fit enough for surgery.
Eventually I was given a Hartmann's procedure, an operation that took 8 hours!! This did manage to remove all of the tumour and i am now cancer free.
However, so much damage has been done that I now have multiple chronic health issues and am practically housebound.
I feel like now the cancer has gone the NHS has washed its hands of me. I have to wait months for any sort of appointment, which are often cancelled last minute. If I do actually manage to speak to a consultant I feel as if I'm not being taken seriously or that I'm being fobbed off. Its now 2 years since I was given the all clear and yet I'm sicker than ever.
The difference in support from when I had cancer to now, is very noticeable, yet I need that support more than ever now.
Has anyone else had similar issues? How are you managing day to day? Does it get any easier?
I'm find life after cancer much, much harder than when I had it, so much so that I almost hope it comes back so I can go back to getting the help I need.
Hi Catdad
When I read your post I wasn’t sure whether to reply to you, but I notice this morning that no-one else has responded yet so I wanted to share some things I’ve gone through which have made life difficult post cancer for me. You haven’t said what your health problems are now, so I’m not sure what you’re dealing with. I too find life after cancer much more difficult than it was pre cancer but I do manage.
I didn’t have bowel cancer myself, but I’m in this group because I had radiotherapy damage to my bowel from my cervical cancer treatment, and asked/requested to have my rectum removed when I was undergoing surgery for a recurrence. I have a permanent colostomy and also lost my bladder among other things so I have a urostomy too.
Chemo during my first line of treatment caused a pulmonary embolism which very nearly killed me, and has caused issues since in terms of potential surgery.
I put off treatment for gallstones, identified at the time of my cancer diagnosis, and ended up with a blocked bile duct which made me very ill. I ultimately had to have my gallbladder removed a couple of years after my cancer surgery, but recovered well from this. Next thing was a breast abscess, which luckily was not cancer. Then out of the blue I had a stroke.
From having my biggest cancer surgery in 2020 (total pelvic exenteration) I have not had a single day without pain. I’ve been told I’m considered cured of my cancer, and I know the pain is nothing to do with it but the multiple other issues I’ve developed since. A scan which was done when my bile duct blocked showed I had osteoarthritis. No-one told me, no-noticed as the priority was my bile duct and gallbladder.
When the pain in my hip became unbearable, I saw my gp, who found my scan results in my records and sent me for multiple x rays. I have osteoarthritis in my spine, both my knees and in my hips-with my right hip being bone on bone.
I am virtually completely housebound and have been for about 5 years now. I use a wheelchair but cannot leave the house on my own. I go out with my partner’s help for about an hour once a fortnight to go to the supermarket. I can’t even get into my own garden by myself. My world is very small.
The orthopaedic surgeon has ruled out a hip replacement as my risk of surgery, having had a pulmonary embolism and stroke, is far too high. I know my mobility will never improve, my joints will stiffen further and I’ll always need a wheelchair. I rattle taking almost 500 pills a month to deal with my pain, and also my anxiety caused by ptsd.
I’ve also been diagnosed with stage 3 kidney disease and most recently type 2 diabetes. So there’s a lot going on, and I can’t remember my life pre cancer when I was healthy and could walk, swim multiple lengths in the pool every day and work out at the gym.
However, never once have I wished for my cancer to return as I know that would be far worse than anything I’m experiencing now and I’m very grateful to have this second chance at life even if it’s hard.
I could remain bitter that my scan results were not communicated to me and my arthritis was allowed to progress unchecked. I could be angry at medical staff not acting more quickly because I could have had a hip replacement before I had my stroke, and it could have transformed my life. I could let all of that consume me, but I’d rather not.
“What ifs” won’t help me now, but I don’t call my life my “new normal” because it’s anything but normal.
However, I try to control the things which are in my own power-in 6 months I brought my blood results into the pre diabetic range through diet, I’m losing weight to reduce the strain on my joints. I eat a very healthy diet to help me having lost my gallbladder, minimising fat and processed food. This makes me feel better both physically and mentally. It gives me some control over medical conditions which could overtake me.
I’ve had counselling via an nhs therapist-more sessions than she has ever done with a patient because my situation is complex both physically and mentally.
You ask does it ever get better. For me it will never “get better” but it is manageable and I have learned to cope. I accept this is my life now, and I ask for help when I need it. The help has been there for me. I don’t necessarily like where I’ve found myself, but I’m alive, happy, and grateful.
I don’t know from your post what post cancer conditions you are now dealing with, but I know it can be very difficult to have one thing after another present themselves. Maybe none of yours will resonate with what I’m dealing with, but for me, anything is preferable to cancer and what I had to go through to deal with it.
Sarah xx
Thank you Kath..you’re very kind.
Sarah xx
