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

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