Outdoor cinema, wheelchair racing, a new boiler and a horrible fall

 It's been a busy old week at Chateau Doust.

We've had the boiler replaced at home because the old one was as big as a car, hugely inefficient and draining water down an outside wall. A hugely complicated process with a plumber, an electrician and a large scaffolding erection (that sounds dangerously like a very rude joke 😂😂) 

We've been back to the company who've quoted to finally do the work on the ensuite bathroom we are scheduled for installation the first week of November ...... yes we've seriously not had a usable shower in there since January 2019 and as a result I'm fine with November as long as it happens this time. We've gone for a lovely 2 tones of grey (the walls very light the floor a charcoal grey) with white units I can add splashes of colour with pretty accent pieces - like lovely purple towels 😀

Mama Mia was great, Claire and I did a little wheelchair racing, the gazebo kept the three of us dry during a brief downpour before it started. We had a lovely picnic and then all sang ourselves voiceless during the song parts of the show - there was also some dressing up in flowery headbands and sunglasses and Claire had an awesome silver wig that she absolutely rocked - plus it kept her head warm and covered her bandage (sort of a head nappy affair) covered.

England have made it through to the semi finals of Euro 2020(1) and a usual the whole nation think football is coming home - even I'm cautiously hopeful but I think the Denmark game is going to be really tough - Denmark are very much on a roll after poor Christian Eriksen collapsed and died for a while in the first game - fortunately they are so well set up at big events like this that they were able to bring him back.

I've got an appointment with the doctor on Wednesday to talk about the problem with my lower back. I've had the physio email them with what his thoughts are and please excuse the lazy copy and paste below but half this stuff is definitely outside my spelling or understanding - all sounds rather scary though ....

On assessment I feel that she may have some discogenic degenerative changes and some facet joint degeneration of her lumbar spine. She has private healthcare and I have suggested that we get her referred for an MRI scan of her Lumbar spine to ascertain the level of changes and discuss her options with an orthopaedic specialist, as she may be a candidate for facet joint injections.  

So this fall .... it wasn't even that impressive - I 'missed' when trying to sit down on the bed and ended up on the floor - it was late, I'd been drinking and even with Gareth trying to help, I couldn't get back up - I fell a few more times trying to do that and where he was trying to help acquired more hurt bits and now I'm literally covered in bruises. I ended up sleeping on the bedroom floor for a few hours with a duvet and pillow until I woke up at dawn needing the bathroom - I half dragged myself and half crawled in there and finally pulled myself off the floor using the toilet to help with leverage. Exhausted, sore and bruised I couldn't face being locked inside the hyperbaric chamber for oxygen therapy so I sat outside the chamber at the MS therapy centre on Saturday morning feeling so sick and dizzy I had to stop after about 40 minutes.

So that makes it critical now that I deal with my weight problem - it's seriously not helping one bit with my back problem, the MS or just my general welfare. Today is day 1 (again) start losing weight and Gareth is joining me on this journey so please wish me luck.

I saw Claire again on Saturday, she was on fine form and finally managed to eat the 1/4 pounder with cheese she's been fantasising about since she had the major surgery on her abdomen to remove some of the cancers and the bits of her pancreas and liver they've destroyed last month. She's had a rough time since the surgery with being told she couldn't eat for a week then only tiny mouthfuls of things like Jelly and Ice Cream for another week before graduating to the odd chicken nugget and a couple of squares of dark chocolate. It's not helped her recovery any that what she could eat wasn't enough to help build her strength up and it's made her Zcaexma go completely wild leaving her with open blisters and special zip socks full of slime to help her skin ..... so yeah seeing her up, happy and scoffing down a 1/4 pounder was pretty magical.

I guess it all brings it into perspective, all this MS stuff is really horrible and incredibly annoying and frustrating but the MonSter won't kill me even if it does make me very angry and emotional sometimes.

I'm doing this today because I won't want to tomorrow - another year since we lost Dad .... 18 years now - I can't quite get my head around that at all. I'll force down some Newcastle Brown (Chateaux Collapse as he used to call it) in his memory and think of the good times and all the pranks he pulled on us all over the years.  

Hope you're feeling strong and taking care of you

T

xxx

Steroids gone from my system and a week of good times

 It seems very odd to be writing about actually doing things again. After 15 months of Covid times where everything has been so 'distanced' being able to spend time with Gareths mum and Dad, see friends and go out for a meal I guess this is a new type of 'normal'

We are still incredibly cautious, lateral flow testing before meeting up with people, still not hugging or shaking hands but just being able to sit and talk is so lovely.

As always my post treatment experience is very much a case of 'nothing to see here' I feel the same as I always do. I'm living life as I always do and doing everything that I'm allowed to do (covid regulations permitting)

Something I've realised I didn't mention in previous posts before I had my 2nd dose - the 'crap gap' you hear people refer to on Facebook groups - those few weeks in the lead up to your next round of treatment where it's like someone took your batteries out - I DIDN'T HAVE THAT - everything was so normal I didn't even think about it until now (it's only reading comments about it this morning that made me think about it) I guess the point I'm taking a long time to get round to is that whilst it does happen sometimes, it also doesn't happen a lot of the time too and those of us who it's all okay for really should make the effort to shout louder about the positive experiences.

Human nature I guess that people are more motivated to post things when they're having a negative experience than they are when it's all just rather 'beige' and normal - How many different ways can you say 'yeah it's all good' without looking like you're trying to convince people a little too hard or just a lunatic who can sometimes be found barking at lamp posts 😂

We now have a new quote to get the ensuite finally sorted (the shower hasn't been usable since January 2019 so we've been using the one over the bath in the main bathroom - not exactly safe for me on my wobbly legs 😆) The next installation slot is October 

    - seems a long way off right ? 

    - Not as far as January the year before last 😂😂

I can live with that.

I now have 2 electric wheelchairs for a while, one belongs to someone I know and I've borrowed / buying  it for Claire to use for her hospital trips and fun trips out with the girls. Silly thing is for her it is too big and heavy for her parents cars so she'll probably use my Bob and I'll use the other one for a while.

My friends wedding last week was lovely, a great time as had by all and the Bride looked stunning and the groom scrubbed up really nicely for the occasion.

Apart from that all rather beige in my world.

Hope you're well

T

xxx

Finally able to see Friends & Family (Epic) Middle Aged Menopause and heat (not so epic)

 

Good grief but I'm British and getting old

The temperature pops over 20 degrees and my ankles have swollen up, I'm sweating like Jimmy Carr in the tax office (apologies to those not familiar with the English tax avoiding comedian) 

It's been so glorious here all week, the BBQ's have both been used many times and Sunday it was finally time for us to reconnect with the friends we haven't seen in person for 18 months.

Preparations for meeting: 

• We have all had at least 1 vaccination (me both) 
• we all did lateral flow Covid tests that morning, all negative. 
• We elbow bumped, 
• we all stayed out in the garden in the fresh air
• we stayed 1 metre apart 

and it was wonderful (the not hugging each other was hard but we were good)

It felt so damn normal and we've all missed it so much 

What else ...... you know what it all doesn't matter.

We have Gareth's mum and Dad coming this weekend - he hasn't seen them in person since the Christmas before last so that's going to really emotional and we will manage with the same preps as last weekend - gotta stay out in the air and keep our hands to ourselves.

I can cope with that - I'm happy with that 

Steroids from round 2 of O are now out of my system I think and life is great.

Hope you're having some awesomeness of your own 

T

xx

Holiday, another round of O, sunshine and the great outside

 We completed everything on that massive list.

Our week away in Watchet was lovely, the weather held (mostly) and we got to eat cake at Houndville with our friends who own the house we stayed in. Bella learnt that she's not always the fastest dog in the park when their saluki/collie cross left her in the dust at zoomies 

Gareth got the Ox-AZ vaccine before we left and it was okay, bit sniffly on the following day, lots of water and a paracetamol sorted him out.

My car no longer has the scratches that Gareth put down the side of it and thanks to the valet guy no longer smells of dog and is sparkly and clean.

I had round 2 of Ocrevus last week and smashed it. For once the sight of the blood pressure machine didn't make it go through the roof, I managed to pee on command into the teenie tiny pot and I was home before 4:30 (I've never managed to leave there before 5pm so being able to get home at a respectable time was awesome)

I've had my 2nd week of oxygen at pressure and oh boy does it make a huge difference to everything.

I even managed to walk around Costco at the weekend - I got quite emotional when we got back to the car. It's been so long since that was possible and it could just be the steroid effects but thats okay, I did it and if I build up some strength this might become the norm again.

We got out for dinner over the long weekend at a lovely restaurant near home, it felt 'real' and 'normal' to be inside a restaurant with other people, yes the staff were all wearing masks and there were some rules in place but good grief it was a joy to do it. 

I'm also ramping up activities to get the en-suite sorted out so that I don't have to play 'will I fall and kill myself trying to get in and out of the bath' in the other bathroom for a shower - a game I do not enjoy.

Got to get Gareth up in the loft too, there's a leak up there somewhere dripping onto the bathroom ceiling in the other bathroom (possibly need to replace the boiler - which will be a massive ouchie if it needs to be done)

The sun has come out here in Berkshire and it's glorious the BBQ has been used a couple of times this week to great results (Tomohawk steak and piri piri chicken) and more to come later in the week.

Loving life right now. Hope you're well 

xx

The great bunny rabbit rescue and a mad month of stuff

 That list I published of the bedlam that is this month is getting longer by the day - I'm adding to it not reducing it in any way

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. 

07/05 - Oxygen treatment 

10/05 - Winston in surgery to remove the infected tooth that has been causing him problems

11/05 - Car being collected by the bodywork people to fix the damage where Gareth scraped it down a fence - this may be finished today or possibly tomorrow

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

15/05 - Meeting Tim and Lisa and their dogs for zoomies and probably dinner later at the house in Watchet (which is actually their house) 

22/05 - Oxygen treatment - INSIDE & PRESSURISED - oh my but I'm looking forward to this 

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

29/05 - Oxygen again

That's all without the working from home and just living stuff - it's all starting to feel a little like normal again.

I had a lovely meal out with Claire and the girls on Sunday. It feels like such a long time since we were able to do anything like that. Much fun was had by us all.

Winston had to have surgery yesterday, where his face had swollen last month, it came back again so I asked his vet (not one of the revolving door of vet-lings that they have in) to deal with it. Winston had a tooth taken out and a clean up and is feeling quite sorry for himself, but is on the mend now

Bit of a drama this morning next doors rabbit is out and on the run - I did try to capture it but it was faster than me. You'd think having had one disappear 10 days ago they'd be a little more careful (they thought Murphy might have had him but I'm pretty sure he didn't because Murphy's rabbit dinners are easily identifiable) we have red kites, foxes and all sorts round here, bunnies should not be roaming wild (was in next-door but one's garden when last spotted) - I've emailed everyone to see if they have contact details but nobody's turned up yet.

AFTERNOON EDIT - Neighbours got home and the bunny was still hopping around, after much chasing around and linebacker movements she's been caught and the best news of the day - it wasn't another escapee - it was the one that went missing a week and a half ago. She's now back in her hutch safe but knackered - almost as knackered as I am 😂😂😂

Hope you're well

T

xx

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 https://home-x.com

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 

xxxx

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 - home-x.com/products/roast-by-the-loveable-rogue-chicken-april-2021

April 19th - home-x.com/products/home-by-nico-april-2021-menu (this is for Gareth's birthday

April 30th - www.northcote.com/at-home/gourmet-boxes/

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

Report


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