Tuesday 5 April 2016

Week 46 Feeling great and preparing for round 2

ERK …. 6 weeks remaining until round 2 and I still don’t have a written confirmation of my dates for Southampton that I got in my text from the lovely Margaret my MS nurse.  I’m not nervous about the treatment itself, that’s not a problem for me as round 1 was a breeze. I am nervous that the dates might be a bit more ‘fluid’ and not quite as ‘confirmed’ as I hope. I know Southampton have been having issues recently with bed availability and hope I’m not a victim of it.
I have an appointment on the 12th with Margaret to catch up and talk about what’s coming – I love that we are meeting for Coffee / lunch at Costa which strikes me as terribly civilised. Given the challenges with beds etc, I might discuss with her the potential for booking a local hotel or something and possibly being a ‘day patient’ if that would mean it can be absolutely locked in and not moved, then all they would need to find me is a big comfy chair in a corner  for the day.
A nice quiet weekend was much appreciated, I got gassed, I did the shopping walked the dogs and went to the pub a couple of times. The rest of the time was spent cooking up yummy things for Gareth and I to enjoy. Steak and baked potato on Saturday with an awesome sauce that I have to admit was bought from Waitrose, and Sunday Dinner was slow cooked Normandy Pork Shoulder with Apples in Cider.
The Pork dish finally inspired me to do something I’ve been thinking about for some time. I started work on what is basically on online diary of things I’ve cooked, a recipe share if you like. It’s another blog but to be honest if nobody reads it that’s fine, at least I can find the lovely recipes again without falling foul of Dr Google and my blondeness. I think it might be flagging up a little on the work ‘what are you surfing on the interwebs’ alarms. In hindsight the use of the word ‘Porn’ in the name probably wasn’t advisable, but I like it.
At lunchtime yesterday we had the first ‘test walk’ with our new dog walker, it went really well and I’m going to meet her to watch today’s dog walk rather than be the pack leader for it. She really is a lovely lady and the pups seem to have taken to her already. I’ve also been very open in that what is most important to us is that their needs are met, the exercise is important but Winston generally wears himself out in 25 minutes chasing a ball, so if he’s had enough come home, make a cup of coffee and snuggle with them for the rest of the walk time.
MS wise I’m (boringly) still doing really well. As ever I get tired, and do spend at least a little time each evening watching he TV through my eyelids,  but it’s not fatigue in my opinion it’s usually that somewhere in the day I’ve done something that’s used up a lot of my energy . I’m really hoping that after round two this will improve along with the lifestyle adjustments to reduce my weight and increase my physical strength and stamina (let’s face it if my bottom and thighs were considerably smaller and less  wobbly then moving them around would clearly take less energy to begin with. My warped brain now has a mental picture of the old Ferrero Rocher advert but instead of someone saying ‘Madame Ambassador with these Ferrero Rocher you are spoiling us’ the little voice is saying ‘Madam Hypocrite with this plan you are not fooling us’ Must not think of chocolate and dieting in the same paragraph – I’m not helping myself – can calories attach themselves to your bottom and thighs through mental visualisation or do the pictures in your mind encourage the fat molecules to breed?
The round 2 preparations are now up and running in earnest and as I suspected it’s a complete re-run of the round 1 tests.  Current status is as follows:

  • MRI - Head and Neck with Contrast

Booked to be done

  • Smear (YUK) 07/04
  • Bloods 15/04 (doubling up with my monthly blood harvesting so that I only have 1 hole made – I’e texted the lovely Margaret and asked what I need to request for the needle with the tube bit attached for the collection tubes to be plugged into

Still to be arranged

  • Chest X-Ray

I think that’s the lot, I don’t remember there being anything else but please feel free to remind me if there is something I’ve forgotten (no skin test was done for me before round 1)
We’ve got a few busy weeks coming up, a ‘The baby’s coming’ lunch with the girls this Sunday, Halifax the following weekend to see Gareth’s family for the weekend, and the weekend of the 30th we are in Knowle for a Help For Hero’s charity do. The 30th is going to be hard, that time last year was when I drove up to surprise my little brother on his 40th birthday, It was the last time I saw Ian when he was well and I suspect that it’s just going to be emotional and pretty heart breaking whilst being good fun as a lot of people I went to school with have accepted the event and I haven’t seen some of them for 28 years YIKES now I feel old.
So onwards and upwards (not weight) I’m so ready for this.

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