It is now 9 weeks since my operation, not much has changed since my last update and all I can say about recovery is its slow.
How I feel
I am feeling ok, I seem to be tired a lot and sleep seems to be excessive or not enough. In my last update I said was confident that by the 4 Sept (fathers day) things will be much improved and I will at least have some clarity, I turned out to be wrong.
Overall I would probably say I am over it, faced with at least another two months of feeding through a tube and all the other stuff just fills me with angst, which I am sure will be short lived and my attitude will improve soon but is what it is at present.
Medically where are things at
The key things that am working on at the moment are;
As with last update there is little progress here, I still can’t swallow and am working on therapy to help me get there. Overall, the team is positive and the best timeline is we hope to see progress in the next two months.
Until this progresses I am stuck with the tube directly into my stomach where I put all my food, water and medicine through/
Nausea, Reflux and Secretion
I need to constantly be spitting out and wiping away secretions. This is a 24hr a day thing, I go to sleep wiping my mouth and wake up coughing it all up. It also causes a crazy amount of reflux to the point of vomiting if I don’t use a combination of drugs some class A (that make me tired) to charm it down. Over the coming weeks I will get some Botox that will hopefully full reverse this and will then switch to dealing with an extremely dry mouth, but at this point looking forward to the change.
The Skin Graft on my wrist is in a good condition now (picture above) so can stop my three weekly visits to the nurse as of the end of this week.
Where to from here.
Today it was decided to talk in months instead of weeks so over the next few months the focus is on being able to swallow, resting as much as I can to recover and trying to-do some work that can’t be avoided.
Unfortunately work is at a point where it can’t be avoided so I am experimenting as best I can to try and get my energy levels to a point where this is consistently possible, rather than sporadic windows.
I have a follow-up PET scan next month and will continue my treatments etc..
I continue to try and build on the energy I get from the family and the occasional visitor, feel free to drop around and say hi.
oh and one last thing. My girls are doing a fun run any support you can give them would be awesome.
Link to support Lexi
Link to support Zoe