I feel in a mess and a muddle at the moment...
After the Rotterdam Regime which finished mid May ( which did give me some remission) my appetite gradually diminished until now I am scarcely able to eat a third of my normal intake. My energy levels have plummeted so most of my time is now spent on the sofa with consequent muscle mass loss. I went to get a couple of new jumpers from M and S a couple of days ( big outing!) ago as now really feeling the cold - I was really shocked at my reflection trying them on...!
I am taking some supplements daily mixed with Greek yoghurt/ kefir but they don't seem to be making any difference.
Alongside I have had ongoing diarrhoea problems, then a c. Diff infection in hospital ( now cured) but although I think I am getting over it some days, yesterday I had another uncontrollable bowel tsunami rush just as I was about to eat a small omelette after 2 looser sessions during the day. That was the end of any dinner! Still more is exiting than I am able to ingest.
Additionally ( oh yes, there's more ) I have had an Indwelling Pleural Catheter ( IPC) in for over a month now and we continue to drain about half a litre every other day. This leaves me uncomfortable around the chest area and with back ache for several hours and only a hot wheat wrap soothes.
My scan from 6 weeks ago showed return of disease and the doctor wanted to start cisplatin/ gemcitabine . I wasn't ready so decision was deferred until last appointment a week ago.
I still felt significantly wiped but now scared that the disease is beginning to return aggressively - my abdomen feels and looks swollen with various lumps and bumps and all the symptoms seem to blend blurily into anything difficult to pick out specifically.
I explained all this to the doctor ( kind, but difficult to understand at times and I feel not really deeply listening. ). I asked if another scan might give a better update picture or how significant the delay in starting treatment again might be , no definite answer on either. I do have links now to a community MacMillan nurse who checks up on me every couple of weeks.
I've been prescribed 2 mg daily of steroids ( which helped me greatly once before restore my strength and appetite) but no discernible difference yet , alongside omeparazole as I am now being occasionally sick and have acid reflux ( never had this before even all through my chemos..). I take slow release oxycodone twice daily but forgot last night and was in stomach cramping pain for many hours ... resorted to the fast acting liquid version in the small hours.
The thing is I wonder - have I reached a crossroads... and how I should respond on my next appointment on the 9 th October? I know it is all an unknown , no one knows how each one of us responds to the next chemo input but do worry if this will do me more harm than good... I know it will be another ' difficult' one to take. I am sure it will stop the pleural effusion and help with some of the more difficult symptoms , maybe even knock back the disease for awhile once again, but it's the aftermath I worry about
Feeling much more between a rock and a hard place than I have ever felt before... and wondering what I should do.
I know it's my body and my decision - my husband will support me any which way, he's been an absolute brick through these last few weeks, but your thoughts as ever are more than welcome...
Love and hugs out there to all those in good and difficult places