Hello
I read a fair bit on here but post rarely. I had IL Surgery November last year followed by a further four sessions of FLOT, these were reduced due to much worse adverse effects I suffered particularly with Oxaliplatin, and this drug was discontinued completely after the second post op chemo session. There were some delays with the chemo due to chest infections and pneumonia.
I seem on the whole to have made a good recovery so far, I suffer diarrhea constantly however. The dietician seems to think this is because my pancreas is out of synch with the rest of my digestive system. She told me a month ago she would write to my GP suggesting I be prescribed some enzymes to take with all food intake/ milky drinks etc., was copying me into this. I haven't heard anything yet. I have experienced dumping syndrome especially when I ate too much or had too spicy foods. Dietician said I have double malabsorption once because of the IL Surgery and second because of the lack of my plumbing working in tandom, she is concerned I may need additional supplements.
Since chemo finished in March I have had a telephone appointment with the Surgeon who said he might send me for a scan prior to seeing him face to face in July. This has now been pushed back to August. I have monthly telephone appointments with dieticians- a different person each time, all tell me that I am doing well and to continue as I am, to start building up towards returning to work in November/ December.
To build exercise I try to garden/ go to the allotment daily, spending three or four hours digging, planting or general tasks. I do walk around 8-13,000 steps per day. I do however tire much more easily and I try not to nap as this then messes around with my sleep at night, which has to be with a wedge pillow as I can only get a couple hpurs if laid flat.
The Surgeon and my GP have told me that I need to continue with pain relief medications as the operation is in recovery terms a short while ago. I have also been told any return to work must be slowly phased and if possible to return part time- an option as I do have a pension income, although I do need to work as this alone is not enough to manage on until I hit state pension age.
Sorry for the long winded build up. My questions to others-
1) Does anyone else feel they are alone with their family with this seeming lack of communication with their treating team?
2) My concern is that the cancer has not been removed/ treated successfully as no one has said it has gone, there has been no follow up scans or tests- is this normal?
3) I do suffer pain around where the scars are and where the ribs (two) were broken but I seem to manage well with a couple of Paracetamol and feel I can live with discomfort rather than take oral morphine (which I forget to take) or start gabapentin, I can live with numbness/ tingling sensation to my chest. Is this normal or should I just keep taking the pain relief?
4) Does anyone else suffer diarrhea daily?
Thank you in advance for any replies, I think I must try to go back to bed as it's 5am again!
Laddo
