Thursday, 15 August 2019

4yrs, 2 months and 2 weeks - how to wear yourself out so you can relax

Ouch … sorry I’ve just realised I didn’t post an update last week. I’d love to say it’s because life has been so great and exciting that I didn’t find the time, but sadly that would not be true.  It’s all been rather meh’ if I’m honest, after the good news that the bloods so far haven’t shown anything cancer or leukaemia related it’s all be a whole lot of waiting for this Friday when I go back to see Dr N before we make our way down to Watchett for our holiday with the dogs and Aunty Kathy.

We had visitors over the weekend with awesome BBQ food enjoyed by all, but oh my did we drink too much – I mean way too much, I had the hangover from hell and felt ill all day on Sunday, sleeping most of it and mentally I’ve signed the pledge (for a little while anyway – until next weekend probably)
We’ve taken Winston off the Prozac that the vets put him, it seemed to completely destroy his confidence in pretty much everything and whilst he wasn’t barking himself sick he would sit and shake like a leaf and whimper when we wanted to leave the house (I’ll never forgive those previous tenants next door who have made him afraid of being alone in his own home – absolute bastards.

And it’s now Thursday – I started this in Monday, I go away tomorrow – I might even have clothes to wear if the sunshine holds and the monsoons from earlier this week don’t return. I have to pick up cat food on the way home for Murphy so that Michelle has enough for the week, make sure instructions are all written up and that we have everything sorted for the morning. I’ve not planned this very well at all.
It’s just as well really that we are only in the UK because I’ve not prepared at all, I had a stye come up in my eye on Tuesday and it’s only jus draining for a while there I literally felt like I’d been punched in the face from it. Yet more eye drops every 2 hours this time 24 hours a day for 36 hours before I could come down to every 4 hours while I’m awake.

And I’m tired, good grief I am tired.
I know it’s stressing about tomorrow (even though I’m convinced it’s going to be fine) the weekend didn’t help overdoing things, I spent Wednesday night getting up and trekking to the fridge for eye drops eery 2 hours, and I haven’t packed or prepared properly at all. Patterns – that’s all it is, one thing leads to another and another and my body just throws up the white flag and says no.

Bloods this month will be later than planned since I’m not coming back a day early from my holiday to get stabbed, they will be fine though.
I’m sorry this is a rubbish post, but I’m tired and stressed getting ready to relax (yes that sounds ridiculous I know)

Hopefully a better post next week from holibobs xxx

Thursday, 1 August 2019

4rs 2 month blood results and some awesome news


The wedding at the weekend was beautiful, Mr and Mrs Ward had a perfect day she looked beautiful and he didn’t look too shabby either J A wonderful celebration of their love and ties to the Royal Navy.
A little shopping, some lurking and relaxing and sadly the weekend was done, it was Monday again and suddenly it’s time to go back to work again (for 1 day before a couple of days off for our wedding anniversary)

I had a call from the doctors on Monday morning saying that they would like to talk to me about how the MS is going (apparently it’s un-nerving them somewhat that they see me for other stuff but apart from a monthly ‘stabbing’ the MS thing is awfully quiet). Rather than take up an appointment slot, Dr B is giving me a call on Friday for a chat.
I’ll have news for him that I received on Tuesday – BIG NEWS (unless his post has reached him – my copy arrived by email from the secretary the day it was produced) Below is the content of the letter regarding the tests the haematologist has done.

29 July 2019
Dear Miss Doust

I have reviewed your blood results which were performed following the previous clinic consultation.  The full blood count was entirely unremarkable with normal levels of neutrophils and lymphocyte counts.  The blood results sent for genetic markers to rule out an underlying cancer of the white cells including JAK-2 V617F and BCR ABL have both come back negative.  The ultrasound scan of the abdomen was entirely unremarkable.
I can chat with you about these results and the rest of the investigations when I see you in clinic next week.

Yours sincerely
Dr N

Laughing at the 'Miss' on the letter ...

There has never been a time in my life where I’ve been over the moon to be described as ‘entirely unremarkable’ TWICE and the double negative on the genetic tests is brilliant. This really was the Best Anniversary present ever. We had a wonderful meal at Menu Gordon Jones in Bath – I have to say that was simply stunning and everything we had hoped it would be.

http://menugordonjones.co.uk/
A couple of days at home with the dogs mid week completely blew both mine and Gareth’s minds, we kept thinking it was the weekend, looking at diaries for what we were supposed to be doing on Monday when actually we needed to be looking at Thursday. Confusion as to why Saturday Kitchen wasn’t on the TV, that the shops were open after 4pm.

I’m back in the office today and working from sofa again tomorrow and then the weekend realy will be here J
Anyway this month’s bloods are in, less concerned about the monocytes and neutrophils now that the big C and the L word look to be off the table.

Hope everyone is staying cool in the warm weather xxx

Friday, 26 July 2019

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

Monday, 22 July 2019

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.

Thursday, 18 July 2019

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 16th – 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

Tuesday, 16 July 2019

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 16th 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 16th seems much too far away L
Watch this space

Tuesday, 9 July 2019

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 26th 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