The past few days have shown some glimmers of hope with Peter's calories gradually improving by a small amount each day. However, not enough to start reversing the weight loss problem and build energy. Yesterday was not a good day from a calorific point of view as he back-slid by about 200 or 300 calories and he can't afford to do so.
We had an excellent home visit from Dr Pacl who is a pain specialist at Clare Holland House, the palliative care hospice, with whom Peter has the best relationship of any of the doctors. I can't emphasise enough what a kind and caring person he is and how he spends a lot of time on the holistic issues Peter is going through - really the only person to have done that comprehensively in the time that Peter has been ill . All the other specialists focus on their speciality and the GP is not much chop, whereas Dr Pacl works through all the issues Peter has and gives thorough medical reasons and information for what is happening for Peter - which you will know is exactly what Peter needs - data and information on which he can ruminate and which helps him understand what is happening and what to expect. Dr Pacl also focuses in on Peter's state of mind and emotions which is an important aspect. I know Peter cannot speak highly enough of Dr Pacl - this from a man who has never trusted or sought out a doctor and would have rather had hot bamboo slapped on the soles of his feet rather than trust or seek assistance from one!
Both Peter and I have agreed with Dr Pacl that it might be best if he has a "peg" tube inserted into his gastrointestinal tract (not sure where) to feed him especially over the next couple of weeks or soon thereafter as next Monday he has to commence 12 sessions of radiotherapy (up to and including 2 July) and also chemotherapy for the same period. So Dr Pacl will follow this up with the other doctors - Drs Yip (oncologist) and Thomson (gastroscopist).
I don't know how I am going to get him to the radiotherapy every day as he is likely, on past experience, to get sicker and more nauseated from the chemotherapy. It's something I dread having to do as it is like taking your loved one in for daily torture, not counting the problems of getting a sick person, with no energy and as thin as a rake into the car and home again knowing that he is loathing every single second and may refuse at any time to continue.
As for how he is right now he said: " I find it difficult to formulate a thought, difficult to speak and difficult to do almost anything these days" when I asked him whether there was anything he wanted to let people know via the blog. But I know he is very pleased and grateful for the amazing help and daily visits from the palliative and community care nurses and for the thoughts and messages from people around the work with whom he has a relationship.
We also had the delivery of the electric lift recliner chair yesterday and he spent about an hour in it. It is in the family room next to the kitchen so it is at the hub of things in our house. So I think we are now as fully equipped as we can be apart from the offer of a hospital bed if we need it.
We are off this morning to have bloods taken ahead of next week's chemotherapy, so until next time... take care of yourselves and thanks for your messages and thoughts.
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