Monday 27 July 2015

Baseline Bloods before treatment

I've had some requests for my baseline bloods prior to having treatment as a comparison point for those after treatment so here they are boys and girls :-)

Sample 0015B239309 (Blood) Collected 01 May 2015 11:17 Received 01 May 2015 11:40 
120 - 160
Wbc count 
4 - 11
Plt count 
150 - 500
Rbc count 
3.8 - 5.8
0.36 - 0.47
76 - 103
27 - 32
300 - 360
11 - 16
Hypochromic RBC % 
0 - 2.5
1.5 - 8
1.3 - 4
0.2 - 0.8
0 - 0.8
0 - 0.3
0 - 21
0 - 60
Alkaline Phosphatase 
30 - 130
35 - 50
133 - 146
3.5 - 5.3
2.5 - 7.8
44 - 97
eGFR per 1.73 sq m 
60 - 99999
Multiply above eGFR result by 1.212 for
Afro-Caribbean patients.
See local guidelines for interpretation of eGFR

Week 10 - Mid Week report

Today is a momentous day .... today I'm a no smoker, I've been planning this for a few weeks with a colleague of mine, we have been to the NHS stop smoking service, it's all planned and to be honest yesterday I only had 2 all day (mostly because I was incredibly hung over and couldn't face them)
The weekend has been lovely, we've seen the Outlaws ... oops In Laws :-) we saw Gareth's Grandmother, had an epic Italian meal out at Julio's in Halifax and the dogs had the time of their lives playing off lead (even Winston was off lead) running with the other dogs.
We stopped in to see my Nana in the dementia care home in Bolton on the way back. Nana has been there since 2007 and now she's so far gone now that she's bedbound, can't feed herself, go to the bathroom, speak, doesn't know anyone, or have the ability to do anything. She's so tiny now, lost so much weight that it seems incredible that this tiny thing could be my Nana who was such a big character in our lives. Dementia is such a cruel illness, it robs you of the person but leaves the body behind to continually torture you. I know is sounds like an awful thing to say, but if Nana went in her sleep, no matter how much it hurt me, I would also be happy for her as this isn't 'living' this is simply being kept alive for as long as possible :-(
On Nana's chest of draws in her room there is a photograph taken at my brothers wedding in 2007 of Nana, Me, Ian and Mum - Only me and Nana left now, and Nana's not really 'with' us now, just looking from Nana (who looked so well in the picture) to it and back again resulted in me crying on and off all the way home.
I've spent 16 hours driving since Friday night and had one night we were up so late it was daylight when we went to bed :-) - understandably this has left me feeling tired and with the stopping smoking I'll apologise in advance if I suddenly become a vile horrid bitch - my apologies in advance :-)
MS wise, I'm nauseatingly great as usual, I'm on the evening list for Oxygen Therapy tomorrow which will be 10 and a half days between treatments - Doesn't feel like I'm hitting the metaphorical wall right now so that improvement since Lemtrada is also holding I don't 'need' to have Oxygen treatments anywhere nearly as regularly to feel great - to be honest I don't know how long I could go now without feeling really rubbish, but it's not a risk I'm prepared to take so I'll stick to once a week :-)
Hope everyone is being looked after and getting the support they need

Friday 24 July 2015

Week 9 done and I'm doing great

Hi ladies and gentlemen

Welcome to the end of my week 9 post Lemtrada treatment. update.

Week 9 has been gloriously uneventful and has had me feeling great. There is more feeling coming back in my left arm now and the trunk of my body is back to completely normal like my legs have been for a few weeks. :-)

The only slightly oopsie point was on Tuesday when I went for my 2nd weigh in, I'd lost 6b's last week YAY, but I'd been due to come on the that week and it hadn't happened (sorry gentlemen TMI ????) and for my 2nd weigh in I stayed the same :-(. Realising I was now more than 10 days overdue I started to have a bit of a flap if I'm honest - I'm 43 now and if I was pregnant I'd be retired and still have a teenager living at home AARRGGHHH. We had been trying 3-4 years ago but it didn't happen and to be honest we'd forgotten about it and given up. We laughed about it saying it would be sods law if it finally happened now with everything else going on but it would be okay :-) and I decided to go and buy a pregnancy test on Wednesday morning and see what was going on. The ladies on the UK Facebook group had a discussion going that morning about ladies being 'late' and I added that I was seeing that too. The threat of the test must have been enough to shake everything loose and I have to admit I breathed a sigh of relief 30 minutes later when mother nature finally got round to doing her thing. I got my test results for the second bloods that morning and talked them through with my lovely MS nurse Margaret and mentioned the lateness and that we'd been discussing it on Facebook and she advised it was something to be noted and that she'd inform Genzyme that it's something noticed. - So just a little FYI, it 'might' happen and it should be something you mention to your team should you or your partner experience it after treatment and not to panic too much (depending on your age and relationship status of course :-) )

I've just had to cancel my oxygen therapy for Saturday morning, we are leaving tonight for Halifax in west Yorkshire (a 400 mile round trip going via Solihull to see my Sister In Law and back via Bolton to see my Nana at the dementia care home she lives at in Bolton) so it's going to be a busy weekend. The Leeds MS therapy centre doesn't offer Hypobaric Chamber Sessions on the weekend :-( which means I can't drag my Father In Law into it and get him to give it a try :-( I have however managed to get a slot on Tuesday at Reading for me though so it's all good. Looking forward to seeing the family again, it's been too long since our last visit what with last minute holiday, treatment then losing Ian, house selling and house buying, work and living in general. Snuggles with the Nieces is top of my list of things that must happen this weekend (even if I have to douse them in Anti-Bac first) The dogs are coming with us which means that they get to be told off by Alfie and Jessie who are a bit old for all the nonsense that our two get up to.

Just looking out of the patio doors here, it's throwing it down, Monsoon season in Bramley - this might be my fault as I got up this morning and put a summery dress on (not a frequent thing) I might have actually made the weather sky fairy look down, laugh and me and then put the mockers on my plans to Work From Home in the garden in the sunshine. Packing plans now include leggings, hiking boots for the park, jumpers, jackets and an umbrella rather than t-shirts, flipflops (that's Thongs to those of you in Oz) (and to those in the UK - definitely FLIPFLOPS !!!!! not me wearing underwear on my feet)  and perhaps a cardigan in case it was chilly later.

I've been a good girl and cooked myself my carb free meals for the next couple of days to take with me rather than disrupt everyone else with my low carb high green veg and lean protein desires. Of course the not drinking wine thing always makes them very uneasy, like Invasion of the Body Snatchers -- AAAAAAGGGHHHHH  POD PERSON   :-)  (sorry if you're younger than 40 that probably doesn't mean much)

I'm hoping we will have time to get up to the farm shop on the top of the Dales while we're there, that costs us loads every visit but oh my do they do the most enormous selection of vegetables and meats, and I think Gareth's getting low on his Mr Hudda's curry paste so I'd best deal with that before he decides to get creative in the kitchen and try to make his own which will employ every pot, pan, knife, spoon and toaster we own, leaving the kitchen looking like a war zone :-)

I'm still taking my Turmeric paste, and I'm lovely and creaky  free in my joints, Amber my 9 year old Epileptic beagle who was struggling with stairs and getting into the car is now bouncing round like a youngster again - she's not been this energetic in about 5 years. I managed to get Gareth to try it yesterday. He pulled his face and said it was 'wrong' but I'm going to keep trying it with him. It's also coming up north to see if I can get the Father in Law on it - worst case Alfie and Jessie would definitely benefit in the same way Amber has.

As always, take care of yourselves and each other, love, virtual hugs, air kisses and anti bacterial handshakes to you all.

Some funnies ..... well it's been a while


Always take the time :-)

My husband sent me this ….. bearing in mind I like minions I think it was very cruel :-(

So very true :-)


I’m sure my husband would agree with this :-)

Not so sure he’d agree with this :-)

I’m sure you all get this ….

We’re all doomed I tell you …. ALL DOOMED :-)

Yikes 2 posts in a month

 Who is this person who's actually updating Tracy's blog I hear you wondering .... 2 posts less than 3 months apart - surely I'v...