Well I thought I ought to write another post after someone recently reminded me that I hadn’t written for a while. Like he said, I suppose it is a good sign that life is slowly returning to normal and getting busy again (too busy in my husband’s mind!!). It’s only been 11 days, but admittedly it seems like longer since I last wrote. Lots has happened in that time.
The first thing to update on is my medication for my neuropathy. I have to say it has ended up a bit of a disaster. The night I last wrote, I went to take my new drug, only to realise that they had only given me the higher dose. To explain, they wanted me to start on 75mg tablets for a week and then move onto the 150mg tablets. I had questioned the prescription at the time, but had been assurred that the pharmacy knew what they were on about and basically made to feel that I should shut up!! Hmmm. Anyway, decided that as annoying as it was (and I can assure you there were a few swear words when I realised!) that I would just phone the hospital in the morning and get them to fax a prescription through to my GP.
Oh if it was only that easy. The other thing that I questioned with my pain specialist was the fact that the prescription only gave me 14 days worth of the drug. So what was I meant to do for the rest of the time? Well apparently it is down to the GP to issue those tablets. I questioned this as last time I had been on pregablin, I had needed more and my GP had refused to issue it as it was blacklisted in our area. Supposedly this wasn’t going to be a problem this time and I really shouldn’t worry about it. I think you can probably guess where this is going. Well the hospital faxed the prescription through and at 5.30pm I got a call to say that the GP had faxed them back refusing to issue it due to it being blacklisted!!!!
Anyway, the long and short of it, is that after many telephone calls by the hospital, that they have now got to apply to the local PCT to make an exception for me….this could well take weeks. I would diss the NHS but in so many ways they have been brilliant for me so I shouldn’t moan for a one off. In the meantime, I’ve been given something different to try in the evenings…day 1 of that today.
I’ve been doing pretty well over the last couple of weeks so it perhaps wasn’t a surprise this week when I had a blip after a busy weekend celebrating my sister’s birthday. That along with Rebecca being awake for 3 hours one night this week (for no reason!!). It sort of wiped out Wednesday and Thursday for me. But by Friday I was back to normal which was good.
Today has been a long, and suprisingly for me, a very emotionally draining day. I went to East London to help MMUK brainstorm for a book for children. Talking about the impact of Myeloma on children was hard for me, and listening to others made it even harder. Especially as some are people who I class as friends. I can’t even go into detail here as the day has been long enough already. I hope though that it will help to produce some better resources for parents who are diagnosed with Myeloma, as well as for children of those parents, and children who know people with the cancer.
Oh the other slightly gutting thing I found out this week is that my sister isn’t a match for me should I ever need a sibling transplant. We hope I am many years off this, but you just never know. I still have 4 other siblings who may get tested but it is one off the list, and being the first we have looked at, was a little disappointing.