Friday 30 April 2021

Restrictions lifting and things starting to change

 Here in the UK they're starting to lift some of the lockdown restrictions now. Pubs and restaurants opening although you can have table service to eat and drink outside. Most places are taking bookings so that they don't get too busy and life has a small amount of normal returning.

I have my next round of Ocrevus on May 27th and happily the urologist has put me on a round of antibiotics as it was noted that I had a UTI at my appointment last Monday ..... he's all given me some tablet in a stick HRT things which are not for 'oral' use 😆😆

The sun has been shining here for days, it looks glorious outside but there's a pretty brutal crosswind that goes right through you. 

I had Claire and Melly over on Saturday with Claire's beagles Toby and Harry - talk about absolute bedlam - 4 dogs doing laps of the garden. Bella was totally in her element, she had 3 boys to herself and loved it. I'd ordered afternoon tea for us all and we sat and gorged ourselves on pastries and cakes with soft drinks - all very grown up and responsible.

And now it's been 4 days since I wrote the above ^^^

I'm truly rubbish at keeping this updated these days - sorry about that

So apart from Ocrevus in 4 weeks what else is new ? 

Today would have been my brother Ian's 46th birthday and I've spent a fair amount of time this morning with tears running down my face, not sobbing and going to pieces, just emotional seeing all the pictures in my Facebook memories. 

We've had a home delivery box from Northcote arrive today with a yummy feast in it, gosh but thats a lot of food - we've judiciously started at lunchtime with the starter and soup course and will work our way through dinner later 😎 and then if we can scrape together 3/4 others maybe a poker game this evening.

A long weekend of giggles with Comedy events this weekend - Just The Tonic Comedy Club on Saturday night with Ed Gamble performing in the extension on Zoom and Sunday Evening a Facebook Live from Scott Bennett. 

Next Friday we have a 7 course Vegan Meal being delivered by Home-X (as a carnivore that this really excited me should give you an idea how much the 3 other meals we've had recently have impressed us that I want to give this a go) I so hope that once the world becomes a little more 'normal' that businesses like this one continue to do this rather than just going back to the old ways

Then it's all going to get swirly .....

03/05 - Having a back, neck and shoulder massage and she's going to do some work on my legs too

11/05 - Blood Test  to check up on my naughty thyroid's current state of play. 

12/05 - Gareth is booked for his first Covid Vaccine (okay it's not me but it's exciting that his number has been called)

14/05 - Off to Watchet for a week long holiday

24/05 - Gareths car is being fully Valeted (I forgot to mention to the guy doing it that it hasn't been cleaned in 5 years)

25/05 - My car being Valeted (I did mention mine is full of dog hair and he may find a long lost sausage roll in the back somewhere)

27/05 - Charing Cross Hospital - Ocrevus Round 2

In June I think I'm going to have a bit of a rest 😂😂

Stay well and take care, much love from me 


Wednesday 7 April 2021

I 'got out' this week

 It's been 5 months since I have been able to see Claire what with lockdown 2 and the Covid situation.

It took weeks of planning between us to just arrange a day where we could get together in her garden and catch up with yummy food but we did it.


Easter Sunday was so much fun, the 3 acquired sisters together again. The sun was shining, we had an amazing 'grazing box' of nibbles and mint chocolate Aero tiffin. We were able to sit out in the sunshine (once Melly and I had built the most complicated set of garden furniture in the world) Claires beagles spent the afternoon zooming around the garden with next doors Labrador puppy (which is huge and has minimal coordination as puppies do) 

It was wonderful and emotional and Claire's cancers are not being kind - it feels so much like we've been robbed of precious time with her for the last 5 months and we now have to find a way to make up for what we've lost and make sure that whatever is coming she has fun and hugs and love to make up for what we've lost.

Gareth and I did an amazing lamb leg dinner on the BBQ and then as I often do I fell asleep on the sofa 😂😂

The 3 day week last week was lovely and a 4 day one this week equally so.

5 weeks left until we have our week away for out holiday and 7 weeks until Ocrevus round 2.

April brings an awesome month of spoiling ourselves with lovely food

this month we have the following scheduled 

April 10th -

April 19th - (this is for Gareth's birthday

April 30th -

April fine dining sorted even if we aren't allowed out 😎

The pubs open here again (for outside drinks and dining) on April 14th so hopefully we can just get out together for a couple of hours with the dogs and do something (anything) different.

MS wise nothing is different, the good side really - I have a telephone appointment with the Neurologist team next Monday where I will be told the long awaited MRI results (which I've seen online and are happily unchanged once again)

08/01/2021 MRI Head :
08/01/2021 MRI Spine cervical
Clinical History

RRMS on ocrelizumab treatment to r/o new activity in view of DMT monitoring


In comparison to previous imaging of 1 year ago there are no new lesions seen within the brain or cervical cord. No evidence of PML or any second pathology.

Conclusions: Stable appearances

I guess they'll want to talk about how things have been since December and the last Ocrevus infusion - perhaps any 'pre-treatment' tests before the next infusion on May 27th

I'm also hoping that in the coming weeks we will get to see Gareths Mum and Dad when they're allowed to visit inside the home - first stop will be Gareths grandmother naturally but hopefully a quick stop with us on the way home again.

Hope you're taking care of you and yours xx

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