I have the best Neurologist

Emailed blood results to Mr N yesterday - got an email back saying Ocrevus has been approved :)
Next appointment is St Mary's on April Fool's day - presumably to sign the paperwork and book preliminary checks.
What are your thoughts on a bit of a rebrand to .....

Kicking MS in the Nut's

Lemtrada, Ocrevus and beyond

Tracy's story

 

 

Bit of a mouthful isn't it ..... all suggestions welcome

 

xxx



4+9+1 Blood Results

Short and sweet here's this months scores on the doors

Naughty thyroid still needs spanking

4+9+1 (Years, months weeks) progress at last (not MS progression)

Happy Monday (note I’m aware sometimes this may take a few days before I finally get round to publishing so I’m adding the frame of reference early J - a bit defeatist I know, but let’s face it is more the norm than the exception)

We still have 2 dogs, Albert was an awesome and sweet boy and absolutely massive (the MS in me loved I could stroke him without even trying to bend down LOL) however he’s a hound, they have a particular way of playing and it’s quite boisterous and whilst Winston has no idea that he’s short and was clearly leader of the pack, Bella was very intimidated by him when he went into play mode and it could be damaging to her confidence hoping she would get used to it. He will make someone an awesome pet, but not our awesome pet.

I’ve done a massive amount of walking this weekend (for me) and whilst I’ve knackered myself doing it, I feel a sense of achievement for it – whilst sleeping on the sofa watching the TV through my eyelids to catch up obviously J

We have a tiler coming round to quote tonight for the bathroom to work with the plumber, a person coming to do the gardening regularly on Friday, and once all that is done hopefully that’s the lot for the big expensive house stuff for a while (please let it be the end for a while).

Woohoo – on a completely unrelated note, I now have a fully functioning set up at work now.  A real keyboard and a laptop that can plug into the dock on my desk so I don’t have to always have a power supply plugged in (seriously this is like waking up and discovering it’s not the 1960’s any more)

We’ve reactivated Gousto for a couple of weeks for dinner inspirations – it’s seriously made us much better at just whipping something up from some bits and pieces and a few store cupboard ingredients – plus it means I use all those mysterious ingredients I bought for the odd recipe and wasn’t sure what else to do with them – many bottles of things for Chinese type recipes are now being regularly used.

We have Friday off to attend a wedding in Bletchley which I’m very much looking forward too. Of course this requires a sitter for the pups as we will be gone several hours so I’m currently waiting for quotes from Tailster but checking other options with our regular pet friends too.(Tuesday Edit – All sorted Denise is coming to stay with them

SHIIIT – Just realised that the gardener chap is coming Friday --- ARSE ---- messed that up royally – re-plan re-plan DAGNAMMIT L (Tuesday Edit --- all sorted he’s coming on Wednesday instead – erm that’s tomorrow - YAY)

Bloods were taken last Friday – I’ve currently been the first person in the queue on the phone to the doctors to get my results for nearly 10 minutes, so lets see which happens first – I’ll finish updating this and publish without results because I’m still on hold, or there might be results in here J (of course if I’m still on hold and I don’t publish this for another day I might not be quite so chirpy about it LOL) (Tuesday update – I’m now picking the paper form of them up from the doctors and will *allegedly* remember to pick them up on the way home so I’ll publish them tomorrow)

Dammit – it’s Tuesday

 – YAY it’s Tuesday
-        Shrove Tuesday
o   PANCAKE DAY

YAY for pancakes, boooooo for not having published this yesterday though.

In my defence after a day at work then coming home to meet with the tiler (very nice man) and being so tired after the weekend I forgot to pick up my blood results last night and then just forgot everything else I needed to do.

Bella is still being rather odd since we lost Amber, it’s almost like she is afraid of the lawn in the back garden and she has taken to toileting in one of the borders and just running round the patio. We’re hoping that with some tidying up in the garden (tomorrow) and time she comes round. It must be so confusing for them, she just went away, the humans are sad and they don’t understand where their friend went. All we can really do is give her lots of love in the meantime.

Hope you’re well and making the most of life

xx

4yrs 9 mths - It's safe - I'm 'normal' again

We go to collect Ambers’ ashes from the pet crematorium on Saturday which I’m sure will be emotional, I have a print of her paw print to collect and a ceramic impression of her paw print. I’ll be getting another tattoo in the coming weeks so she can leave her paw print on me for ever. Need to have a think about where to have it and a design for it. I’m thinking something with a flower or brightly coloured butterfly

There really wasn’t much else happened last week, mostly feeling sad and recovering from storm Cali and preparing for storm Dennis … both had us holed up in the house avoiding the high winds and rain, K9 Pleasure Park is waterlogged and surrounded by great big trees which have a tendency to fall down so it was closed for the safety of both people and dogs.

 I have my monthly bloods this Friday only this set and 3 more to go (and they might yet morph into a different set in prep for Ocrevus assuming it’s approved by the board) I’ve now joined some of the Ocrevus communities to learn more about the treatment. Things I thought I knew but was wrong about …. First infusion is done in 2 parts 2 weeks apart not in one go, then after that all in one go …. Okay then J

Last week (and the 2 weeks before I guess when Amber was so poorly) seems to have really sucked every last drop of energy out of me. I took the dogs to a new Private Hire park yesterday for a run, they had a whale of a time with new sniffs, new trees, a whole load of agility equipment that they had absolutely no idea what to do with. The hut was warm and dry with a comfy clean chair running water and power – for the KETTLE …. Cup of coffee and a biscuit while the dogs run themselves to sleep – don’t mind it I do thank you very muchly. So what I was going to say before I got distracted was that walkies was okay because it involved far less walking and far more sitting with a cup of coffee supervising (which with given low energy levels was perfect and Winston and Bella had a ball – and lost 2 balls J).

We’re getting there with the quotes to get the bathroom sorted out although the tiler the plumber usually uses seems to have vanished off the face of the earth so I’ve contacted a local one who comes highly recommended by many people in our local community Facebook group to get a quote from him.

Last I guess is a reflection of my madness, I looked at the rescue page for the rescue we got Winston from and I saw a beautiful boy who might make an awesome addition to our pack. I mentioned that I’d looked at their pages to Gareth and that they had a lovely hound there, when he asked which one I told him and showed the picture and he said he’d seen him too …… I guess we need to have a chat tonight about things and see if it’s something we both want / need and if it would be the right choice for us and the pups.

So that’s it for this week, I’m me again and no longer a weepy mess (tomorrow will be the exception) I can think of her with a smile and with my eyes rolling (her snoring and farting were legendary – particularly the farts which could literally have people retching with tears rolling down their faces J)

So as usual it's taken me all week to get round to finishing this and publishing it - it's now Friday

Got stabbed this morning … 3 months of Lem Bloods left to make the 5 years …. Then the new stuff to follow on.

Love and germ free hugs to you xxx

4yrs 8.5 Months - Heartbroken and so very sad

There are times in your life when you have to do something that you know is going to make your world crumble and your heart shatter into a billion pieces.

Yesterday Amber went over the Rainbow Bridge to go and be with her first human mum, my mum.

It was the right time, she was ready and she needed us to be strong for her and we were but oh god I’m a mess, I can’t stop crying, I’m typing this I’m crying, I’m at home with Winston and Bella, I’m crying, even driving into work this morning – crying, I’m just a complete mess.

There’s been other stuff this week, there’s the whole ‘coming out’ about me feeling quite excited about upcoming Ocrevus - trying a bit of ‘strange’, having a little ‘treatment on the side’ of Lemtrada - yes it genuinely feels that just thinking about it is cheating / planning an affair / betraying Lemtrada.

Okay so let’s all agree that right now my head clearly is not in a ‘normal’ place, I’m pretty messed up right now and talking complete and utter bollocks because it’s that or just sit here crying all day in the middle of the office thus confirming everyone’s suspicions that Tracy’s lost it …

So I’m going to stop here, go and have a bit of a melt down and aim for normal next week. Much love to everyone bearing with me xx

Run free baby girl, you will always be in my heart

 

Time for something new - going to war again

Please read the below with positivity

I wrote it with positivity and I’m excited about what is to come

This is going to be a long and emotional post so please bear with me, I suspect there’s going to be a lot of thoughts and emotions that will be coming out and I’m sorry but there’s going to be some bad language.

When I chose Lemtrada and started writing about what my hopes and expectations were I was always pragmatic and accepting that it’s not a ‘cure’ and was never billed as being so. You can hope and dream that it will be ‘the one’ but never forget that it’s a dam to hold back the flood but it doesn’t promise to make the water disappear. (I’m sorry if you’re reading this and English isn’t your first language that might read as nonsense)

I met with my neurologist yesterday and we agreed it’s time to look at doing something again.

So near to the 5 year mark and my MRI’s are stable, there is no ‘new’ disease activity or active disease.

However ……

The existing MS though has progressed in the last year. My strength, walking, tremors in my legs have all become worse, it started around March, slowly, stealthily and the changes were so subtle and quiet that it was easy to overlook and blame other things like my age, weight, lack of going to the gym any number of things.

I’m incredibly disappointed with my immune system for not ‘remembering the bloody message’ it got it really well for the first 4 years.  I feel like it’s betrayed me, broken my trust, it’s disappointed me enormously.

It’s like having a friend who you know can be a bully, but they’re ‘okay with you’ so you co-exist with that friend and it’s a good life, but that friend has been sneaky and mean and cruel to me behind my back and now I have to defend myself and fight with it.

I didn’t want to, I didn’t start this shit, but it’s going to be bloody sorry that it messed with me.

We’ve talked about the options, and settled on putting me forward for Ocrevus rather than a 3^rd round of Lemtrada – it’s more targeted halt the progress of existing disease.

It needs to be approved by the board then scheduled so overall could be about 3 months before it kicks off.

It’s important to make it clear that Lemtrada hasn’t ‘failed’ for me, it did EXACTLY what it was supposed to do for 5 years – it’s stopped new disease in its tracks and it’s STILL WORKING – STILL DOING a grand job of that right now as I type this.

5 YEARS of no new disease in a progressive condition is a BLOODY BIG WIN and I’m grateful for that. Even the newly reinvigorated old stuff isn’t as bad as it was 5 years ago so that’s a big win too and now it’s time to circle the wagons and defend myself again.

Lemtrada never promised to fix what was already broken, for a long time it seemed to have fixed everything. The previously damaged bits were quiet and didn’t bother me, but in the last 10 months their voices have been getting a little tiny bit louder week after week, month after month, such tiny little changes that they don’t register until you look at them as a whole.

The fight goes on with a slight change of weapons – in my head this is like a new release of the Call of Duty game …… cool new toys, a different map layout, same objective – hunt it, kill it, kick it’s arse and win at all cost.

I’m not going to stop writing, the transition from Lemtrada to Ocrevus is a story that needs to be told and I haven’t seen anything written that follows on from one to the other (but to be fair I haven’t ever looked for something like it either) It’s going to become something a little ‘extra’ about moving on and keeping fighting I think.

There may be a bit of a rebrand in the coming weeks to reflect that this is a Journey and that sometimes our plans change and we need to adapt but the journey continues regardless. This is about fighting back against MS, we have many weapons at our disposal and whilst Lemtrada has worked for me, it’s time to move on to the next phase.

It really is all good, it’s not a failure I’ve had 5 good years of my brain not being damaged further it’s given me 5 years of breathing room.

Please don’t see this as a bad thing

I would do it all again in a heartbeat !!!!!

So FUCK YOU VERY MUCH MS – I’m coming for you again and you didn’t win last time so expect to get your arse handed to you again.

I’m happy to talk if you have questions, my email contact is on here, get in touch.

If you’ve clicked here from Facebook my PM Inbox has plenty of room to touch through there too.

Now where did I put my flaming sword of kick arse ???

Oh yes there you are my shiny little friend