Wednesday 18 May 2016

Round 2 Treatment Week Day 1

All checked in at Hotel Southampton again, lovely to see the team on the Wessex Neurological Ward again. The MS nurse who told me off last time is here today, the first thing she aske was if she asked should she check my bags for bottles of wine.
The saline has been pushed in, so have the Anti-Histamines and the Steroids are flowing. The good stuff will be arriving shortly. I've got the cannula in the side of my right arm this time rather than my hand or the curve of my elbow. It makes it so much easier to bend my arm and not be bothered by it.

I was having a full on flap last night before coming here. Gareth said I should share all the weird stuff that was going through my head so other people would know that it's 'normal' or so that everyone else would know I'm not in the slightest bit normal.

The little voice in my head kept saying silly things like 'it's already worked - if it 'aint broke don't fix it'  - 'what if the T&B cells grow back and they forget to be well behaved cells and come back badly behaved again' blah blah blah blah. The butterflies had mutated into line dancing elephants in my stomach. Even my usual permanent smile had disappeared, people kept asking what was wrong, was I okay (apparently me not smiling isn't something they see often) It was just me driving myself slightly mad with silliness as I did this time last year.

I arrived this morning happy, relaxed and ready to start all the butterflies have gone the smile is back and it's all good. I've got this! (told you I was being silly didn't I)

A recap again for how I was for Round 1 - this happened within 6 months of my diagnosis of Relapsing Remitting MS. I had 6 big relapses in 6 months which altered my physical ability but health wise apart from the physical problems I had no complaints at all. I don't have other ailments the only thing I had was me relapse symptoms. Coming in for round 2 once again I'm annoyingly healthy with no other issues and now I don't have MS symptoms any more either - please bear this in mind when comparing to yours or your loved ones starting position for treatment.

Round 2 Day 1 Schedule - unsurprisingly this is very much similar to round 1

Treatment -  Running Order:

  1. Admission and if they need to do any repeat testing they will do this first – Urine test – they’re making sure you aren’t pregnant again (Very important for the boys….)
  2. The Cannula gets put in for the infusions. It depends how easy you are to Cannula, and the policy of the hospital you’re in. This may be in your inner elbow, the back of your arm between your wrist and elbow, back of your hand or anywhere else random they like to stab people – it doesn’t really matter
  3. Anti-Viral Medication  - to keep away pesky stuff like Hepatitis, Thrush and if you’ve had chicken pox in your younger years then Shingles is a possibility as the virus remains in your spinal fluid then shingles is how it comes back
  4. Paracetamol – well I was given it at this point anyway
  5. Saline solution to flush the drip line (just a push with the syringe)
  6. IV anti-histamine (just a push with the syringe)
  7. Steroids  Drip bag on a stick thing takes 30-40 minutes depending on how quickly your veins slurp it up – Keep mints handy – IV Steroids leave what is described as a ‘metallic taste in your mouth’ personally I think it tastes like nail varnish remover smells but it goes when the infusion is over.
  8. Lemtrada – the good stuff – The drip is set up for a 4 hour controlled infusion – This can be slowed down if they you need it over a longer period – for the first 2 hours they will do OB’s (Observation’s) to monitor your Heart Rate, Blood Pressure and Temperature every 15 minutes to ensure you are doing well with it. After 2 hours they relaxed my OB’s to every 30 minutes for the last 2 hours then every hour for the next 4 hours.
  9. Saline solution to flush the drip line – this will be a drip infusion and will probably take 30 minutes to flush every last drop of the Lemtrada from the IV line into you
  10. Anti-Viral Medication  - to keep away pesky stuff like Hepatitis, Thrush and if you’ve had chicken pox in your younger years then Shingles is a possibility as the virus remains in your spinal fluid then shingles is how it comes back
I'm looking round the ward at 'the sick people' and quite honestly I feel like a bit of a fraud. What am I doing here taking up a bed ? I could have gone to a hotel tonight and let a person who's 'actually sick' have the bed - I keep suggesting it but they're not having it at all (possibly my fault after last year's 'wine incident')

Day 1 is in the books, my carefully regrown Lymphocytes are all being exploded and flushed out of my system. I have an attractive 'steroid glow' which is really as close to a tan as a freckled Ginger ever gets.

Round 2 so far has been easy, nothing untoward to report at all.

Good luck to all round 2'ers, and Round 1'rs be awesome and rock this xxxx

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