I’ve ( for the first time) dialled Macmillan helpline but put the phone down before it was answered because I don’t think I’d make sense.
I need to talk and realised I have nobody I can ‘dump’ this on.. nobody I’d want to upset.
Im angry and scared and emotional.
I have stage 4 peritoneal cancer.
I have pleural effusion. Being breathless has become the norm. but I noticed a marked worsening after the flight home from Germany, I found it very difficult walking through the airport.
Today I had 1.5 litres of fluid drained from my left lung, it’s the max they can remove in one go, they had to leave about 1 litre in there.
I know the fluid contains cancer cells. It was drained pre debulking operation in May this year.
Today I was told my left lung has collapsed because of the amount of fluid & amount of time / pressure, there’s a good chance it will not ‘re inflate’. My right lung is compensating well, oxygen levels etc normal.
I was told that there is a procedure which can stop the fluid building again by basically getting the pleural walls to stick together, but I’d likely not be able to have that done. I’d likely be given the option of a drain.
So when I got home I read up on both procedures & found that being offered the more permanent version was dependant on life expectancy.. and that’s floored me.
Im angry with my oncologist / consultant for not mentioning my pleural effusion, ever. Surely she could have mentioned flying could affect it? Shouldn’t she have told me to have it drained pre flight? . I know that’s ridiculous, I know I should have been on-top if it. Why the heck didn’t I go and have it checked / drained myself?
This September I was hospitalised with acute proctitis (I’d been telling my oncology team about probs / pain etc with my bowel since May). When I saw my oncologist after the hospital stay, she was going to take me off Avastin as she put the recent hospitalisation down to that life prolonging drug. I had to tell her that the bowel symptoms started months before I went on to Avastin. I’d mentioned them at every consultation & even if not all the consultations were with her then surely it should have been recorded?
She then checked my records / colorectal bits. Came back & said I’d had c-diff during my recent hospitalisation! I said I’d had zero c-diff symptoms. She then said it showed the c-diff gene but that that would account for all the rectal pain / proctitis…… what ?
A week or so later I got hold of my discharge notification from the hospital, it mentions stool culture findings were NAD. This was written by the colorectal consultant.
About the same time Id asked my cancer hospital for a quick rundown of recent medical history to be written for my travel insurance & doctors in Germany.. The resulting letter stated that I’d recently been hospitalised with acute sickness and diarrhoea!! C-diff etc .. No I had not.. I’d been hospitalised with acute proctitis, the symptoms being childbirth like pain in my rectum! . I’d not vomited at all & had one isolated occurrence of diarrhoea midway through my hospitalisation.
I feel lost. This consultant is actually fabulous, she fought for me to have the huge debulking operation.. She’s the one I’ll have to turn to to try for more/different treatments etc. but I don’t know who to trust anymore..
I know all NHS staff are overworked, knackered and stretched to breaking point, but does that mean that patients have to basically take on responsibility for their own care, watch constantly for possible errors and are unable to relax into the care we desperately need when most vulnerable ?
