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.
