Friday, 21 February 2020

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

Tuesday, 11 February 2020

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

Wednesday, 5 February 2020

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 3rd 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

Thursday, 23 January 2020

4years 8 months blood results and another Amber update

The scores on the doors for this month. Thyroid seems to be on the frisk again, not at all sure what is causing that, watch and see I guess. Certainly explains why I've felt like a flat tyre for the last couple of weeks (I'd been putting that down to post Christmas / overdoing things / dodgy tooth thing and worrying about Amber)

Poor Amber had another funny turn on Tuesday, I got a paniced message from doggy daycare to say she'd collapsed and couldn't get up, she was just thrashing her head around and one of her eyes had rolled back in her head. Left work in a panic only to get home and find her wandering around with her eyes where they should be. Later that evening there was a massive explosion of sick and after that she perked right up (persumably because the nasty came out).

I have plumbers booked for tomorrow to come and give me a quote for replacing the whole shower unit in our ensuite, fingers crossed that they aren't too expensive and we can just get on with it.

So here they are, enjoy

Monday, 20 January 2020

4yrs 8mths and a little bit - visitors, cooking and Amber update

Back in work again, sadly another week has passed and the powers that be at the Euromillions have decided once again that this this week it isn’t me L

It’s been freezing here for the last week, with the smart meter that shows the cost for the gas and electric rolling round at high speed racking up an eye watering daily charge. Being so cold does have some benefits, clearing up ‘dog nuggets’ from the garden is far less gross – flip side it’s like a skating rink getting to the lawn LOL
We had Gareth’s parents down for the weekend, lovely to see them and catch up and as usual we cooked up lovely things – slow cooked Greek Lamb leg on Friday and BBQ’d on Saturday (well mostly Gareth did because I was hiding in the house keeping warm and watching the Newcastle v Chelsea game – last minute Newcastle goal for a win YAY) Alternative Sunday dinner was chicken and pineapple fajita’s with lime sour cream and refried beans …. And tonight I’m aiming for Toad in the hole (but to be fair that was plan A yesterday too LOL)
I had my monthly ‘stabbing’ on Friday and was hopeful for blood results later before I hit the publish button for this post. I’ve just called and they’ve not been reviewed yet so try again tomorrow please ….. ho hum, based on recent form there’s a high chance having written this it could be 3 days before I remember to publish it so watch this space.

I have my annual meet up with the neuro 2 weeks tomorrow and as ever even though I’ve had a sneak peek at the result I’m still nervous …. Silly me ….
Amber is much better after the fright she gave us a couple of weeks back, Beagling on like the star that she is. Winston and Bella are mad and Murphy-Cat is as lovely but cowardly as ever. Gareth loves his new job and much more chilled out these days.

I’ve decided a year without a working shower in the en-suite is long enough and contacted a plumber to come and quote for the work myself. The old saying of ‘if you want something done, do it yourself’ comes back to haunt me again J

Amber’s ‘mini’ that I won in a charity raffle to raise funds for BeKind Rescue was made last week and has arrived. It’s amazingly good and the lady who makes them is super talented (I’ve had July 20th this year booked for having the other 2 made since May last year so in 6 months’ time we will have a full set) I had 3 ordered so I donated my 3rd back for another raffle – it didn’t seem right to just reduce my order when I had planned to pay for 3 anyway so they got 2 raffles for 1 in the end
Look how wonderful the replica of our girl is – I did consider posing her with the mini and a real carrot but decided the ensuing bedlam was too likely to end up with something being broken LOL


Hope you’re taking care of you, wrapped up warm and feeling loved.
It’s still Monday and I’m going to publish …. Will wonders ever cease so back tomorrow (hopefully) with blood results xx

Monday, 13 January 2020

4 yrs 8 mths (ish) - Tracy 1 - 0 Silly Appointment Time

Sometimes a good whinge can really help with things.

I called Charing Cross and asked them how I should get there for a 9am appointment on a train arriving at Paddington at 07:26am and it was universally agreed as physically impossible. They put me through to the secretaries who also agreed that World Peace & Brexit were more achievable and promptly moved my appointment to February 4th at 14:15pm J Same location / journey, significantly less chance of getting my face kicked in by angry commuters.
Last Wednesday was awful, poor Amber Girl was in a terrible state, she literally started exploding fluids from everywhere, collapsed, her gums had gone completely pale and her breathing was similar to chain stokes in humans. Gareth left work and came home to come with me to the vets, and we didn’t think she would be coming home. The vet was epic, sure it was a horrible case of a bug going round (apparently it’s the same for dogs as it is for kids in school) which because of her age looked really bad but it could be treated. She came home – 48 hours later she was full of life and bouncing around again.

We’ve had dinner out and some really spectacular dinners in – an epic 24 hours sous vide Brisket finished on the BBQ with Brazilian spices, chicken liver and Pedro Ximines pate, Chicken Milanese and a Beef Casserole – I’ve really been cooking up a storm over the last week and there’s a plan for some spectacular Lamb Chops later in the week.
Once again I’ve been reminded I need to do some ‘rationalisation’ of paperwork (I’ve been meaning to get round to this for nearly a decade – but hey this time might be different)

Happy new year to you, hope 2020 is kind to you xx

Tuesday, 7 January 2020

4yrs 7mths 3 wks - Blood reults christmas toothache and the most awesome news EVER!!!!

Read to the bottom - there's something you don't want to miss down there :-)

Christmas and New Year are over and done with and normality is resumed.
We had a lovely one visiting family in deepest darkest Wales and Yorkshire. There was a slight fly in the ointment with me being unable to have a drink as a result of mega strong antibiotics. I had to have an emergency dental procedure on the Friday before Christmas. I had an enormous abscess under a tooth which left me in excruciating pain and half my face looking like a hamster storing seeds for later. All sorted now though.

I had my annual MRI on Saturday afternoon at Hammersmith Hospital in London. I’m hopeful that the results will be ‘all the lights are out’ a 5th year of NEDA is my hope and if it’s not well I still have all of last years preparations to fight for a 3rd round of Lemtrada. Hammersmith were great, I arrived nearly an hour and a half early (I really hate to be late for important stuff like this) and thanks to a cancellation I was in, out and back on the bus to Paddington before the actual time of my appointment time.
I’m due to see Mr N on February 5th for my annual check-up – at 9am (AGAIN) - £48.20 to get into London at peak time but the appointment is at Charing Cross rather than St Marys – I’m having nightmares about how to get there from Paddington. There’s the London Underground and buses involved in this manoeuvre.

At a respectable time would not be too much of a challenge, but at 7:30 in the morning at the height of rush hour it is slightly more difficult to manage than Brexit or World Peace. Seriously – you can’t get a folded up child on a tube train at that time in the morning let alone a middle aged woman in a big wheelchair ……. I’ve left that with the secretaries, but seriously St Marys is round the corner and Hammersmith is on a bus route – literally anywhere else in London would be doable, but Charing Cross for 9am in a wheelchair ….. it might as well be on the moon.
My thoughts are now turning to holidays (we’re booked in Watchett again in April for Gareth’s birthday) but some friends of ours are currently in Florida ‘doing Disney’ so to speak and I’m feeling really nostalgic – not ‘do-able’ while we have Amber, we won’t leave her again because we’d never forgive ourselves if we weren’t here and something happened. In my head though …… it’s warm and sunny and I’m sipping something made of Rum and Coconuts with my feet in the pool.

8 weeks tomorrow is the anniversary of my entry to the world – I’ll be 48 years old …. WTF ….. HOW ….. WHEN …… NOOOOOOO

Seriously I don’t get how I can be coming up to that age – in my head I’m still 27
All those promises I make to myself about losing weight, getting fit, quitting the smokes, shaving my legs more than 5 times a year (LOL) and another year has passed, I don’t smoke anywhere near as much as I used to, but apart from that there was little to no progress made in the other areas.

A New Year … to quote Yoda ….. Do or do not. There is no try.”
I finally got my blood results for December today – mostly because my spreadsheet is on my laptop and I’ve not been at work so I didn’t bother. All terribly boring and normal as usual, I don’t even worry about the strange red ones now that the Haematology man has cleared all the scary stuff.

AND EDIT – I typed this up yesterday but time got away from me and I didn’t get round to publishing it. I did however make the time to drop my blood results across to my Doctor and Neurologist with a note for Mr N to say ‘see you in a few weeks’ time for MRI results’ ….. this morning I’ve had a reply from him, not a man of many words on email but that’s fine – this is enough J

the mri scan was stable
Another win for the spreadsheet and proactively making sure I keep my team up to date rather than leaving then to their own devices