Monday, 25 January 2016

Week 36, 8 months post YAY


Week 36 done and dusted YAY.

I had night sweats again over the weekend for the first time in a long time; it might have had something to do with the heating being on full blast because it’s been quite cold so I’m not really concerned.

A very busy weekend with the Heating being repaired (again – 3 times this week the Gas Care people have been out)  A trip into London on the train on Saturday – date night done properly for dinner at Steak & Co near Leicester Square and then Hangmen at The Wyndham Theatre. We had amazing food and then laughed ourselves silly watching Hangmen. (thanks to JmC who booked awesome tickets for us to watch that) We got home late and then stayed up until ‘stupid o’clock’ before bed which meant it was gone lunchtime when we finally surfaced on Sunday (I will probably pay for that later this week)

I’ve requested Thursday and Friday off work this week as the new flooring for the upstairs of the house is ready and booked in to be fitted Wednesday – Friday, we are very excited about how it will all look and feel when it’s done, the only carpet left in the entire house will be on the stairs as a 150 year old cottage = wonky stairs so the antique oak flooring isn’t going down there – but YAY the carpet is ‘Aubergine’ so a very deep purple (one of my rare ‘girlie’ things is that I love love love purple and Gareth has given in and let me have some)

I’m a little wobbly and off balance after the excitement and energy expended over the weekend, a couple of early nights should sort that out easily enough (assuming I have the common sense to have them)

In other random news I’m no longer a ‘dumb blonde’ I’m now a red head – quite ginger in fact after finally getting round to doing my hair and hide the grey ones, I needed a little colour in my life and it really does make a quite spectacular change.


As you can see from the bags under my eyes the weekend has taken a bit of a toll and I look like an old bag.

I have my next appointment with Dr C my neurologist next week on Tuesday afternoon. I’m hoping to continue my ‘Star Pupil’ rating with the progress I’ve made over the last 8 and a bit months since I had my first round of Lemtrada. I’m hoping that she will have news of when round 2 will happen and also the bloods / MRI requirements for round 2. I suspect I will need another chest X-Ray to confirm I still don’t have TB, same for bloods to confirm I still don’t have HIV, probably an out of cycle smear (BOOOOOOOO – yes girls we can’t have any pride when it comes to these things) to confirm everything is okay at that end and the 8 vials of blood for all the other bits and bats that they test for.

I had my oxygen therapy Saturday and met a couple of lovely new people, one an MS’er who hadn’t heard of Lemtrada before, and another who’s having HBOT for Fibromyalgia (it works so well on so many things) I’m still doing my bit as a spokesperson for Lemtrada as that BBC Panorama HSCT program that was aired last week seems to have stolen all the limelight. Whilst HSCT offers another option for MS’ers to halt / slow progression, there was very little about previous treatments those patients had received and whether Lemtrada was ever offered to those people or received and failed was not established.

HSCT is currently on my list as my ‘last resort’ if this had not worked – that said, by the time I’ve had round 2 and if something as going wrong (crosses all available extremities, throws salt over my shoulder and crosses the path of a black cat) then hopefully by then Ocrelizumab will have completed the phase 3 trials and been approved in the UK by NICE to offer another option before the final resort. Only time will tell I guess, and right now it’s all a bit moot as Lemtrada has done an amazing job of stopping my MS dead in its tracks (crosses all available extremities, throws salt over my shoulder and crosses the path of a black cat - again) – but you should always have a Plan B for these things. (the project manager in me demands; contingency, risk mitigation and an alternate delivery method if required etc…..)

So tediously normal and suspiciously like an MS free life as always, hang on in there everyone xxx

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