4yrs 2mths - sunshine and romance

4 years and 2 months since all this Lemtrada treatment began. I have set of bloods number 50 being drawn this Friday, I’m hoping that with changes that have been made over the course of the last month that perhaps this might reflect in my blood results in a positive way.

I’m completely knackered today, the heat last night and the epic thunderstorm certainly made sleeping somewhat more difficult than I’d hoped it would be. The dogs wouldn’t settle, roaming the bedroom and trying to steal each other’s sleeping positions then grizzling at each other. The flashing lightening lit the bedroom up every few seconds and the thunder was spectacular but also bloody loud. Everyone at work is snapping at each other because of the heat or just sitting there fanning themselves and watching the clock to escape to their air-conditioned cars - I’ve managed to stay firmly in the second camp and not have a ‘Hulk Smash’ moment.

Typical British I guess, weathers crap we want it to be better, weather good we moan it’s too hot and What The Forecast says it’s 29 degrees out right now (Celsius for those who use ‘other’ measurements).

I’m also wearing contact lenses today – one of the last 2 pairs in the world I own – I’m practicing for the wedding at the weekend. Funnily enough, I can see perfectly with them – no needing reading glasses for small print or laptop work, seeing glasses for moving around. I can just ‘see’ which is lovely. The little voice in my head says don’t stop just keep going, but that eye injury scared me so much. Apart from anything else, no glasses and I now hate my new hair colour and want my long hair back L so tonight is ‘colour stripping’ night to deal with problem number one and for the growing it long again – well that’s just time.

So it’s now Thursday - I wrote this ^^^ yesterday and didn’t hit post

Today it’s even hotter than yesterday the car said 37 degrees when I got into it and came from the office to finish the day in the comfort of our significantly cooler home J I’ll be telling people I live in Spen-Vegas soon J

Very much looking forward to next week, it’s our wedding anniversary on Tuesday we both have Tuesday and Wednesday booked off work, we’re off to Bath on our Anniversary to Restaurant Gordon Jones for what I’m hoping will be a pretty epic ‘Surprise Menu’ – really there is no menu, just dishes that come out to you.

8 years we will have been married, the longest thing I’ve ever done in my life except being a daughter. We’ve had a great time, there have been hard times, sad times, and downright scary times but we work well together and haven’t murdered each other LOL. In all seriousness, I love him more than ever; I couldn’t imagine my life without him and am incredibly grateful that he puts up with me J

So a week of love, wedding and wedding anniversary coming up and hopefully a nice ‘normal’ blood result tomorrow J

Stay well xxx

EDIT Again
It’s now Friday ….. sorry about that J xx

REMAP - helping make life easier for the disabled in the UK

MakeAbility is the name of the game for REMAP, a UK based charity with access to a wonderful group of people who help 'Make' custom things for the disabled.
I had a chance meeting while waiting for an eye test a couple of months ago with a lovely lady whos husband is part of REMAP Berkshire. I was in Bob juggling my handbag, phone, umpteen glasses cases that wouldn't all fit in my handbag and a cup of coffee and making a bit of a mess of things. She asked doesn't my chair come with a cup holder which would make life easier and I pointed sadly to the shattered fixings of my last cup holder on the side of the chair that I hadn't quite got round to removing after destroying it misjudging Bob's dimensions on a doorway.
She explained to me that Remap custom make things for the disabled that simplify life and to be honest I felt a little like my cup holder need a little too trivial (even if getting something that fitted on the front where the only available connection was the end of a bit of pipework with a locking screw.
A phonecall and  a couple of emails later and a lovely man called Peter came to my house inspected Bob (helped remove the old shattered fixinf for me too) took some measurements (even measured my Costa 'Cup for Life') made some sketches and said I'll let you know when it's done.
A week later, Peter with back with what I can ony descibe as 'The CupHolder that will outlive us all' It's steel, perfectly sized, sturdy and locks into Bob's piping - because I'd mentioned that I'm quite prone to bumping stuff, it's even got a rubber bumper on the outside edge to protect stuff I bump into from my super tough cup holder (my desk has a rubber bumper mark on it from the few times I need Bob at the office).
I made a donation to Remap to say thank you for the wonderful thing that they did for me - it might not seem much but having the use of my hands and not trying to wedge a cup of boiling liquid between my thighs as I moved around - well it was a big deal for me a huge one.
Remap have done a little 'case study' for their website with {SHOCK HORROR} a photo of me in it https://www.makeability.org.uk/project/17056/wheelchair-cup-holder-2/
Please take a look around at the rest of REMAP's site while you're there - it's not just Berkshire it's national. If you know anyone who could do with a little something to make their lives easier that you just can't seem to get anywhere, give them a shout, their talented engineer volunteers can probably whip you something up that's perfect just for you.
Shout out to an absolutely epic organisation and the wonderful things that they can make that are perfect for us.

The day after the ultrasound

Ultrasound is over and done with, the lovely Radiologist, Archie said things look quite good in there

–       they were looking for: Hepatosplenomegaly is a disorder where both the liver and spleen swell beyond their normal size, usually due to an infection such mononucleosis.

Archie said neither my spleen or Liver are enlarged and that for a 47 year old specimen that has taken a bit of a beating over the years the liver looks in good shape (is it strange that I’m quite proud of my liver)

So Dr N is on holiday this week but back next, the blood results are still pending (apparently they’re growing asparagus in them or something weird for the Genetic testing)

I sound so calm and relaxed about it, but Gareth’s googling really frightened the hell out of me on Tuesday, I was stressed, twitchy and incredibly nervous. When it was all over and done and I could finally have something to eat, I stopped at KFC on the way home

– big mistake

– HUGE

2 bites of my Zinger sandwich sitting at a set of traffic lights and I was throwing up into the KFC bag (fair play to the bag it did a good job) as all the stress and nerves decided to unload themselves all at once.

Everyone at work knows this is going on, the disappearing to hospital, blood tests scans etc all happens in working hours and needs to be explained. I haven’t mentioned this to family and friends though, I simply don’t want anyone else to have to worry about this while the investigations are ongoing. Once it’s done and there’s either a confirmation that there is something that needs to be worried about or I can tell everyone that there’s nothing to worry about – then I will ‘come out’ about it. As it currently stands that date is August 16^th – holiday day.

Living more healthily is really nice. Waking up, feeling refreshed, no brain fog and breathing more easily.  Gareth being on board with this and participating in it is also a big thing, in the past it’s been a bit undermining to have someone continue to do all the stuff you’re not doing any more and it feels like you're having it waved in your face.

Actually on that note – the being an ex-smoker,  if anyone’s interested or cares about how I’ve finally managed it.

I’m sure you’ve probably heard of the Alan Carr book (not the squeaky comedian) – The Easy Way to Stop Smoking. I’ve tried to read it in the past, couldn’t get past the first few pages if I’m honest, incredibly difficult to read for the repetitiveness. The Audio-Book however from Audible is great, just stick the headphones in and listen. It makes so much sense and it’s a little NLP in that it repeats the message over and over to get your head into the frame of mind that you’re ‘giving up nothing’ that you’re freeing yourself from a drug addiction and that you’re happy to be doing so.

Not much of an update I guess, but something else ruled out so that’s good J

Much love to everyone and thanks for putting up with me xxx

4 yrs 1 mth 3wks - Scary blood part 3 Rise of the UltraSounds

Blood bit is further down where the blue writing is ..... this post was created over 2 days

And there goes another week. I’ve been a good girl taking care of me and so far there is nothing to report on the Haematologist front. The next appointment is on August 16^th at 09:40am - a month tomorrow and as Gareth reminded me is also the day our holiday starts. Fortunately all we need to do is drive down the M4 to get to Watchett and being there for 3-4pm is infinitely do-able after the appointment. Another bonus for deciding to stay home this year J

The weekend was nice and relaxed, a little Oxygen therapy, some shopping, dog walking, the obligatory weekend Rib Of Beef on the BBQ followed by England winning the World Cup (cricket) in one of the most incredible games I have seen in my life. It really was one on the last ball of the Super Over. Edge of the seat, nail biting stuff and just to add a little spice – I had £1 on England to win J (my idea of what constitutes gambling is pretty pathetic)

I’m also a very short haired brunette now (dammit video ….. will sort it) I had my hair cut on Friday and decided that it looked pretty crap in boring blondness for a little while I even considered jet black hair but the traumatised memories of 15 year old me with black permed hair looking like a bad Kevin Keegan drag act reigned that impulse in J

Dog care for the wedding at the end of the month is sorted – it’s confirmed and paid for and Megan the lady who is taking care of them is lovely so we can relax and just look forward to it.

I’m going back to my 16:8 eating regime properly this week, with no cigarettes and almost no booze this should be pretty easy to manage. I’m sitting here at my desk at work toying with the idea of making my 8 hours that I can eat 12:00-20:00 today which will allow me to have lunch and dinner ….. I’m not entirely sure a cheese sandwich and a packet of crisps at lunch time is going to help in this effort though J

AAAND it’s now Tuesday – I started typing this yesterday and never got round to hitting the ‘post’ button

Something different has happened in my dull, dull existence now …..

it’s got me more than a little alarmed.

I’ve had a call from the Dunedin Spire Hospital this morning saying I need to come in for an ultrasound. It’s an abdominal ultrasound that is being done, but the request was for it to be performed by a specific person who I couldn’t  see until next Wednesday - not helped that I know what her specialisation is and Gareth’s been googling and shared what he found and has (not literally) scared the shit out of me.

Now I have an appointment tomorrow morning at 11.20am to get it over and done with.

Message left for Dr N’s secretary to call me back ASAP – I want to know what’s being looked for and where we are on results so far – all of a sudden that appointment with Dr N on August 16^th seems much too far away L

Watch this space

4 yrs 1.5mths - Bloods behaving badly - ongoing

Monocytosis, Neutrophilia and Leukaemia – 3 very scary words.

It's really very odd to have a conversation about these things and it's not just the things in general, or about other people, but to be talking about you.

They’ve taken a lot of blood samples from me – some for in house tests and some which have gone out for genetic tests and will take about 4 weeks to come back.

I’m fairly chilled about it all if I’m honest and not straining at the bit to get all the results back ASAP. This could of course be that I’m in denial or I’m being an ostrich and sticking my head in the metaphorical sand – until it comes back I don’t have to deal with it – and I’m honestly expecting it to come back and say it is lifestyle related and can be managed.

^^^ this might sound like I’m trying to play things down, but when I saw Dr N on Saturday morning, he started with the comment ‘as a haematologist I have to tell you that your blood results spreadsheet is absolutely brilliant and even without the Dr’s referral letter I looked at the sheet and knew immediately why you were coming to see me’

Everything is there on my Blood spreadsheet – it’s been there since day 1 and I hadn’t noticed

– SOMETHING HAS BEEN GOING ON SINCE BEFORE I HAD ROUND 1 IN 2015 –

·       They were both over the high level on my pre-treatment baseline bloods that were the first entries I put into the spreadsheet.

·       Both my Monocytes and Neutrophils were regularly pushing and exceeding the upper levels since BEFORE I had round 1 of Lemtrada in May 2015

·       It’s there on my spreadsheet – it’s been there for years

·       For some reason I hadn’t marked either up as red or amber before this morning.

(I'm going to upload the updated tracker showing in the bad behaviour now to the 2 facebook groups so you can find all the new pretty red and amber highlighting)

So whilst my request to get this looked at was as a result of me raising the concern about the recent trend – actually it’s been going on far longer than the last 12 month and this makes me less concerned about it because if it really was something more horrible then I’m pretty sure it would have become evident before now.

Both Dr P and Dr N have both said this could be related to my having smoked throughout this period of time - well that has changed now and hopefully will show in the next lot of bloods I have done on the 26^th of this month when my regular monthly bloods will be drawn.

I’d already massively cut down on the alcohol I was having, but I’m now depriving it of even more - not completely, but weekdays nothing at all, weekends very little. This has 2 benefits, I’m not damaging the non-smoking effort, and my calorie consumption has significantly decreased thus also helping with weight loss efforts. I’m having homemade Asparagus soup for lunch and a freshly prepared salad for dinner tonight.

Funny (not funny) how things like this really focus the mind, all those things I’ve talked about every now and again on here along with my propensity for procrastination and then laughed and said ‘here I go again’ or ‘oops again’ now seem so very important when in reality had I been more diligent before then discussion might not have been needed.

Really looking forward to the wedding at the end of the month in Portsmouth – it’s going to be an awesome day and very special indeed. Dogs are sorted for the day (nearly – confirmation tomorrow) and just need to get the finer parts of outfits sorted (the theme is Red, White & Blue)

Our holiday is 5 weeks away now, I’m really looking forward to just getting away for a week, it will also be awesome to see Aunty Kathy for the first time in an age (I’m such a rubbish niece)

Winston is being swapped onto a different med tonight so see if we can take the edge off his anxiety about …. well pretty much everything.

Apart from being crushingly good, healthy, sober and as dull as hell …. Well that’s pretty much it I’m back to being crashingly boring, no exciting tales of epic nights and shenanigans, just a whole load of not a blasted lot at all. Sorry about that L

Much Love T xx

4yrs 1mth 1wk - scary blood thing

*DISCLAIMER BEFORE I START*

I’m overweight, I smoke(d), I drink, I don’t do lots of exercise and it’s not often I manage the full 5 a day of fruits and vegetables …….. I’m the poster child for all that nasty stuff we’re advised will happen to us if we don’t become gym bunny teetotal vegans – so please bear that in mind when reading through todays post J

I’m writing this because I need to, but I’m not entirely sure I will actually post it – I might wait a couple of weeks and then post the outcome rather than the ‘in flight situation’

But then I did promise right from the start of this to always post everything, the good, the bad and the downright blah …

The quandary

By writing about it now it is going to make people’s minds race and wonder – but then goodness knows mine is doing a fair amount of that too and I said I would be honest and share so here goes ….

I saw Dr P yesterday about those neutrophil and monocyte counts that have been over the high level for the last 12 months. I’ve been referred to an haematologist – I’ve also played the BUPA card since in my opinion, I should not be taking up a space in an NHS queue when I don’t need to and making someone else wait for longer.

The intention is to rule out nastiness. A quick google search will tell you what high levels of each of these can be caused by.

To save you the effort of google,

-        one has ‘can be the C word’ response as the top result

-        the other has ‘can be the L word’.

Dr P was quick to say if it had been either of these for the last year then he’d expect me to be in a right ‘shit state’ right now (my words not his because he’s far more polite than me) so we’re in the process of ruling out nasties and investigating why my bone marrow is cooking up a recipe with too much seasoning.

I had googled prior to the appointment,  so the L word being part of the conversation wasn’t a complete shock,

However

it’s distinctly uncomfortable to have someone use that word in connection with yourself. Anyway the appointment with the specialist is on Saturday morning at 09:50am when I’m sure I’m going to get poked at and blood removed.

I must stress (and it might just be me being weird) that I’m not massively stressed about this, it’s all okay and I’m expecting them to tell me that it’s nothing more sinister than that I smoke(d) and need to eat more veggies …..

I put my last cigarette out yesterday after 2 weeks of listening repeatedly to Allen Carr’s - The Easy Way audio book I was ready to do it – 2 weeks of analysing every puff, the taste, the feeling, the smell, my heart-rate, ability to fall asleep and just thinking about each one – He’s right when you actually think it through you’re not giving anything up at all – its kicking an unpleasant, nasty addiction which I don’t even like, so I’m now officially a Non Smoker and I have had a big smile on my face J

It looks like I’ve sorted out the dogs for the end of July and mid-august holiday in Watchett is getting closer.

The garden is now done (well it needs mowing), but sadly I haven’t done the video – sorry about that – I’ve just texted Gareth to remind him to remind me that I need to be reminded to ensure I remember to do it J (try saying that 5 times really fast J)

Amber has had another stroke over the weekend, smaller than her previous 2, but her balance has really worsened over the weekend. She’s still herself and happy and Beagling everywhere but sometimes it hits right in the heart that time is becoming shorter and ‘when the fun stops – stop’

I guess that’s all I can say for now, will report more when I have more, and Gareth replied to that text I sent and said he’d film the video at K9 tomorrow night when we walk the dogs.

It’s all going to be fine J
Hope you’re all having an awesome one xxx