It was a weekend mostly in bed and quite a few 🤮 and the realization that we have to do something about it because not only is it extremely painful for him but the tiny bits of food he eats aren’t even staying down.
So Mar 2 is the last trial treatment and a visit with the doctor. Joseph needs a recliner - and I speak to the doctor (Nimit). We agree to a scan TODAY and an increase in pain meds (100mcg Fentanyl patch!!!). With the scan results we will know; if the trial is working, if we can we punch a hole in his kidney, if we go to chemo? Etc. Etc. This is the scan that would normally take place in three weeks time - at the end of the 9week-trial - but we can’t wait that long.
The scan is after treatment and just one floor down, but without a recliner for him he ends up in a bed and ... yep! ... 🤮!! (Luckily we aren’t in the waiting room!) Thankfully the attendant takes the bag - but she was genuinely concerned and mortified. For us - it’s status quo - it’s what he does now ... for no particular reason ... daily .
Today Mar 3 is a visit from the Palliative Care Consultant called Cate ... and Cate is now up there with our “Angel Dee” because Cate stayed for two hours and asked Joseph (& me) questions and Cate also told us all of the things we can have!!
We can have an over-the-toilet chair (no need to buy it at Aldi on Wed!) ... we can have the bed we are currently paying $96 (a month? A day? A week? I can’t remember) - anyway it will be free! We can have a pharmacist come to the house to talk about the drugs, we can have a palliative-care doctor come to the house to ...help! ... with everything. We can have a nurse ... and someone to clean! (Well only clean every two weeks but that’s right up there with my schedule anyway.) Cleaning has been difficult because sometimes the noise can be too much for Jospeh! (I know dusting doesn’t make any noise but I don’t do it just in case!)
So I feel as though the weight of a small village has been lifted from my shoulders! ... and now we wait for the results of the scan.
I should mention two of the hardest things about this journey I’m on with Joseph Vomiting & Math.
Vomiting - I’ve never been good with. I went 30 years without vomiting and would lie still for a week to avoid it. Our children didn’t do it - well not often ... and up until now, neither did we. So it’s been tricky learning to “deal” with it ... especially when driving! I think they should teach it in defensive driving school, because it surely took everything i had to a. not join him, b. keep control of the car c. keep driving!
Math - I’ve never been good at math! - It’s not just adding and subtracting - it’s numbers! A little blind comes down over my eyes whenever a number is mentioned! That’s why Joseph has tried hard to stay on top of his medication.
So last night, after the doctor wrote out the prescription for 100mcg of Fentanyl, and before i could pick it up from the pharmacy, and after the trauma of the day and 🤮, I suggested to Jospeh that we add the two left-over Fentanyl 12mcg patches, to the 75mcg he has on (i can do that math - it’s almost 100!)! ... a that’s what we did and he had the best night ever!
Of course the first thing that Cate did today was check Joseph’s meds and commented that he was on 175mcg of Fentanyl. I explained to her that NO - it’s 2 x 12 = 24 and 1 x 75 = a total of 99”! ... SHE explained to me that NO - it’s 2 x 50 = 100 and 1 x 75 = a total of 175mcg! Oh dear me!!!. The patches were 50s not 12s!! There are so many boxes of so many pills, of so many different strengths and so many different names and colours on the bathroom counter!!
Joseph told Cate I have trouble with numbers ... and we did laugh ... in the end ... but the (really) sad part of this, is that it turns out the 175mcg wasn’t even too much for him
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