So it's now been 7 weeks since I last posted on this site during which time its fair to say that I have recovered well from the surgery. My abdominal wound has healed up quite nicely and I am able to eat pretty much anything I like.
Having said that, during the weeks following surgery I did not feel like eating much at all so I was getting by on three very small forced meals and a couple of Fortisips (meal replacement drinks) a day. During this time I had my first contact with Te Omanga Hospice who have now taken over the majority of my care. The first consult was at home with a palliative care doctor and nurse who checked me over and outlined (much to my surprise) that I did not need to be worrying about forcing food in as people with late stage cancer do not take on the nutritional benefit of food the same way healthy people do. So their advice was to eat only if I felt like it, and then only what I wanted to eat. So eat for enjoyment rather than nutrition. Weird.
About this time I half-heartedly went to see my Oncologist to have some more chemotherapy (Irinotecan). I was struggling enough at this time with the thought of less good days as I wasn't having many of those at all and said I would only agree to more chemo if I could be convinced that it would do more good than harm. The result of this conversation was that I once again chose not to have any more chemo as it would certainly mean more time in hospital and less good days.
Each week a Hospice nurse comes and visits me at home, and as needed, I go and see a doctor at the Hospice. They take care of all my scripts etc and their main goal is to keep me as comfortable as possible for as long as possible at home. Surprisingly there is very little residential care offered, but its there as and when the time comes. And that may end up coming in the form of a few days in and out to solve a certain problem such as pain management etc and not necessarily full time residential care.
Since then I have also seen one of their Occupational Therapists who has provided a massive lazy boy chair, a walking stick (ehm) and shower rail, and a Touch Therapist who is trying to assist with moving some of the fluid still being retained in my legs. Starting to feel that my poor old body is shutting down. This week we will be taking the children along to an Art Therapy session (much to Paige's delight and Zach's contempt) but will be interesting to see how that goes.
One of the strange things that has been happening is that following a 10kg weight loss (assumed to be all fluid) that I experienced upon discharge from hospital I am now accumulating fluid around my abdomen and legs and gaining weight as a result. The Hospice doc referred me into Wellington Hospital last week for an ultrasound and to see if they could drain any of the fluid from around my abdomen but in the end there wasn't much there at all to be drained so it was not required. Other symptoms thought to be related to the fluid build up in my torso was loss of appetite and shortness of breath. Since these are seemingly not related to fluid build up, no one is really sure what is happening.
We do know my liver is much bigger than it should be, and that's all part of the parcel at this stage. I am back on low dose steroids now which is helping with an increase in appetite and energy meaning I no longer feel the need for an afternoon nap every day. This is great news by me as I felt I was spending far too much time in bed and when I was up I was shattered. Small mercies.
I will continue to check back in as I am able, but at this stage we are definately taking things one day at a time. It's a scary position to be in and there is absolutely no certainty about anything at the moment.
