We have had an exhausting couple of days. Peter had the Peg tube inserted into his duodenum yesterday and that took most of the day. He had a disturbed night last night with acute pain at the site of the Peg tube but he was able to settle down and sleep following a hot water bottle and change of position in bed.
Today he visited the oncologist who was concerned about his level of hydration and so he was administered with 1 litre of intravenous fluid with potassium as his levels were low. While we were there we were able to see the dietitian who showed me how to feed Peter through the tube using a large 60 millilitre syringe and using ready prepared tins of complete nutritional liquids. So we practiced under supervision of the dietitian and I have been able to give him the 3rd of 4 daily feeds so far today with one more to go in an hour or so. We are starting off on 2 cans a day which will be about 700 calories and nutrients and will gradually increase to 6 cans a day which will be about 2,200 calories - an amount which is enough to stabilise him and maintain his current weight but will not add weight. Not sure what we do about adding weight but Peter has been encouraged to continue to try to eat and drink when he wants to so that will be additional input. Anyway, the dietitian was really good and helpful and we feel confident of better outcomes now on that front, in due course.
The other good news about the Peg tube is that I can also crush most of his medicines and then add them to water and inject through the tube so he doesn't have the problem of choking on the pills and doesn't have the issue with bitter tastes or the inability to swallow fluid when trying to take the drugs. So we are both feeling a glimmer of some hope that in a few weeks, we will have the nutrition side of things a little more under control.
This will be equally important as he recommences chemotherapy next Monday and will also have 12 sessions of radiotherapy over three weeks (up to and including 8 July). So he will be re-admitted to hospital for at least the 5 days of the combined treatment as the chemo staff think he will be too fragile to be at home for that period and I know he will be very sick as a result of all those toxins in his system. So the less issues we have with both medications and food the better off he'll be.
So for the rest of the week now we will just have the community palliative care nurse visits and an Occupational Therapist who is coming on Thursday to discuss what, if anything, Peter can do to compensate for the weakness in his right arm and hand, which we think is because of the tumour.
As for me - okay, busy and a bit tired but glad to have Peter at home, despite the daily challenges and issues.
As Peter would say: Salut until next time!
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