Wendie visited today and as well as her taking a look at Jake, we discussed Chemo and I've got a nice little patient protocol Q&A to read - only 6 pages (well it would be if Wendie had given me pages 5&6).
Anyway, here is what I meant by conflicting info:
"You need to clean Jake 3 times a day" - No, says Wendie, I don't. Seems problem is the bottom of the flange will always put pressure on the skin at the bottom (a by-product of my manly physique), so extra cleaning isn't going to fix that. Wendie is going to talk to the endoscopy nurses about some cream that could be applied to help keep the skin settled.
If this comes off, it will mean I don't have to try and find creative ways to make the flange stay "lifted". Wendie has also given me some techniques/exercises to do to help the stomach get a break from the pressure.
Other medical gems:
I've had to shave a number of patches on my stomach now to give the sticky pads a number of alternative positions. This is because my skin reacts to the adhesive. Well, bugger me, Wendie says there is a simple solution to help with this - apply some aqueous cream and it will act like a moisturiser and help "heal" the skin. Why has this not been suggested before by the district nurses?
I've also been having issues with the sticky pads not lasting as long as they used to. First couple seemed to last a week, but most recently they only seem to last a couple of days. Wendie asked if I was using the skin prep squares. What skin prep wipes? Seems there are two little wipes/pads that I should have been given. One - remove - is for cleaning the residual adhesive off the site the pad has been on. Second - skin prep - is to clean the new site and give the adhesive a good surface to stick to. I now have supplies of both. Had I been given these earlier, life would have been much better.
Seems I shouldn't use the same pad site consecutively either - need to give the skin a chance to recover.
If only Wendie had been seeing me each week!
I took the opportunity to ask Wendie about the dove body wash I'm meant to use once treatment starts. There is now at least 3 different variants available, so can I use any one of them? Seems the idea is to use something that doesn't have perfumes and will moisturise. When the original recommendation for dove was made, they only made one type, so it wasn't an issue. But wait, there is a simple solution. Seems I can rub the aqueous cream on my face, etc before getting into the shower, then just wash it off. No need for special body wash just for my head/neck after all.
I'd have needed the aqueous cream anyway to moisturise my face once the radiotherapy takes hold, so now it is a multi-use product. Three uses out of the same 500gm tub - and it's only $7.
I certainly think that if the various district nurses had asked some questions along the way, I could have avoided a number of issues over the last couple of weeks. Classic case of I don't know what I don't know and they didn't ask the right questions.
On to the chemo discussions. Seems I'll get my prescription on Monday for the anti-nausea pills, but even though constipation is a known potential/probable side affect, I'll need to ask for some pills to counter that to be added to the scrip. Duly noted.
Seems they'll run a litre of fluids through me before they run the cisplatin through and the need to keep pushing fluids through for the days after (and before as well it seems) was again stressed. By my calculations, I'll be consuming at least 15 litres of water a week for the next 7 weeks - and alcohol needs to come off the menu for that period because it will impede the fluid levels.
I'll meet Ruth who is the clinical support nurse (or something like that) and will probably see her at least twice a week going forward. She'll be my 1st port of call if I have any issues and/or questions. Again, need to make sure I tell them about anything out of the norm - mouth ulcers, etc especially - so they can get them sorted asap. Already subscribed to that, so won't be any different to way I'm doing things now.
What else?
- Have sorted out with Cancer society re parking on Monday. Just leave a note in the car window and then see them after treatment for the permit.
- Wendie said she will see me on Tuesday at the hospital as she has a meeting there around same time.
- She liked my emergency backpack and the folder I've got all the stuff in.
- We agreed I'd get another thermometer so I always have one by my bed within easy reach.
- I'll need blood tests before each chemo cycle, but these will be done at Aotea Pathology on the Saturday before treatment.
- Don't rush trying to do the radiotherapy without the pills - it will happen when it is meant to and until then, take the pills.
I'm sure there was other stuff, but it obviously wasn't significant or else I would have remembered.
So, tomorrow is 3 days to go until it all begins (Monday is day 0 as I see it) and I must admit to not being overly worried about it all - at least that's how I feel now.
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