Lazy Easter

Well doing not much at all has been the Easter of 2017.

Usually there would be roast lamb dinner, lots of chocolate and a family gathering.  I didn't plan anything as I expected to by lying around feeling very sorry for myself counting the hours to the next anti-sickness pills.

The reality has been quite different.  The anti-sickness pills are clearly highly trained professionals as I haven't felt sick at all. Temperature is stable with no fever and I'm a bit on tenterhooks waiting to feel awful..... 

I did have high hopes for the "chemo diet" and shifting a few pounds.  (apologies to those who have had a different experience who think this is a bit flippant).  Over the last two years I've gathered some unwanted extra weight - I blame the steroids (actually I should blame cake) - but when my talented daughter produces a Kinder Bueno cheesecake - resistance is futile. 

A couple of hours ago injected the first of the G-CSF shots. Apparently they can cause  bone pain but at this early stage I'm not too concerned - ask me  again in a couple of days on that score.  I have highly trained painkillers ready to deploy.

So the Easter break has been spent mostly on the sofa watching crap on TV and hanging about social media (and trying not to internet shop - did I mention I am really good at shopping?).  A sofa day in my world also requires fluffy company. 

In fact it was one of my first questions about undergoing HSCT - will I be able to go near my cats?  For those with pets, the answer is yes - just be careful - antibac gel after handing them and the litter box is now not my job - happy days!

Day 2

Well day 2 has been rather better than expected…….

Now just to set something in context…..

Himself, my lovely sister and I went to lunch a couple of weeks ago in an unmentioned café in Poole. Why are buying lunch in a café when we own a restaurant?  Well it was a day we’re closed and we didn’t want to mess up the kitchen. 

In the aforementioned café we order paninis – the ones that clearly must come pre-packed with lots of stuff that makes them last a long time but also for some reason always give us awful heartburn. (it’s a family thing).  They are the paninis that require a Gaviscon chaser (and lots of it).

Bear with me here, this is relevant….

Went to bed last night feeling a little fuzzy, clearly the anti-sickness pills I’ve been given know and understand their job, as did the bladder protection meds.  I’ve not been sick or even felt sick – so far so good.  Bladder is in fine shape though for non MSers that may be TMI.

The anti- stomach acid pill however failed entirely – heartburn to the magnitude of 100 paninis so a very uncomfortable night with the odd thought of “can I do this?”. 

By this morning however the curse of the panini had dissipated and I was feeling much better.

I am pleased to say that apart from feeling a wee bit tired, I feel quite well which I find unexpected.

I also know that this could be a trick but let’s enjoy it while it lasts.

I’m rattling with pills but at least some know what to do.  (the good news is that the stomach issue has gone – either that or the pills have worked out their job after a shaky start).

So Himself is at work tonight – my lovely daughter is keeping me company lest the feeling fine is really a trick – and yes I can do this!

First chemo - done!

Well it's Good Friday and there are plenty of committed and caring people working in the NHS despite many of us enjoying a long weekend.

First dose of chemo is done and we're back at the hospital flat, we'll head home tomorrow with this bounty....

Feeling a bit fuzzy (early onset chemo brain?) but so far so good.

It starts...............

Here I am at Hammersmith Hospital…….

As we all know the NHS is significantly under resourced but I won’t hear a word against them.  Himself and I are settled into a hospital flat ahead of the first stage of my treatment tomorrow.  I was accepted for this treatment in November 2016 so it’s taken a while to get to this stage.  A three month washout of the magic juice, lumbar puncture and litres (well it felt like litres) of blood tests to ensure it’s all safe to proceed.  I met with the Haematology team last week so it’s all systems go.

HSCT is essentially a “reboot” of your immune system.  MS is where your immune system attacks your central nervous system, connections get confused and in some cases lost.  By setting the immune system back to zero it’s thought that MS can be halted a magic spell “MS – be gone”!.  The treatment will not undo damage but bodes well for the future and for me totally minimise the risk of the word that starts with “Q” and ends with “plegia”.

To reboot a system of course you need to turn it off and on again.  The process I will go through is explained here https://www.mstrust.org.uk/a-z/stem-cell-therapy#howitsgiven .

First day of chemo is tomorrow, the mobilisation stage is done as an outpatient (hence the hospital flat as the hospital is three hours from home, and that’s when the motorway gods are smiling).  I’ll then go home with injections to stimulate enough stem cells then if all goes well, they’ll be harvested in 10 days time.  Several weeks after that it will be an extended stay in hospital with more chemo and the stem cells transplanted back in.  Then it’s a waiting game for my immune system to recover.

The big risk is infection with such a compromised immune system, so bear with me if I don’t come to your parties.  Food is also an issue – I ate my last pate, and rare steak for a while.

I think I’m all prepared

·         boxed sets ü

·         fully loaded Kindle ü

·         new PJ wardrobeü

·         the best family ever ü

·         shortest haircut in my lifeü (I’ll be bald in weeks I’m told)

Me and MS

Me & MS

This is a story about me and HSCT though it may help to know how we got to this point…….(the short version which probably isn’t so short but please bear with me).

I was just a reasonably healthy middle-aged (eek) wife, mother, wicked step mother, HR professional, amateur masterchef and mad cat lady.  Who knew I'd get ill......

It was October 2004 – my Dad was visiting from the land of sunshine.  I’d had one of those busy “working mother” days.  A day at work, running around after teenagers – running my daughter to the horse yard (loved that bit – get to pat a pony).

I remember it well – I was sat at the dining room table chatting with my Dad, a glass of wine in one hand, brie and baguette close by, when I developed a sudden headache, felt a bit odd and the right side of my face went numb (think dentist type numb face).  Off I went to bed with codeine assist, leaving himself and my Dad to sort the worries of the world – it was in safe hands.

In the morning the headache was gone, the feeling in my face was also missing in action.

I like to give most things (and people) some time to get over themselves so three days later with still a dead face, I headed to the GP.  He diagnosed a “virus” (which is GP speak for “I haven’t a clue”).  Told me to come back in a week if I wasn’t better. I returned a week later still with dental block face and by this time completely numb left arm.  First question “do you have private health insurance?”.  Thankfully yes (thank you work) and an instant referral to a Neurologist, the lovely Doctor N.

Thereby started a round of MRIs, lumbar puncture, cardiologist etc etc.  I was officially diagnosed with RRMS in July 2005.

Now mostly it’s nipped around my heels save a memorable year where it took the sight from my right eye (left eye is lazy) so had to give up driving and reading for the best part of a year.  Despite one eye guy telling me it wouldn’t recover, my optic nerve is made of very stern stuff, it took a while but recover it did.  I celebrated by buying the car I’ve always wanted – isn’t she pretty?  I don’t have her any more (read she was a money pit) but better to have loved and lost etc etc……

I’ve been on two types of drugs to contain MS, the last four years on Tysabri (Magic juice) keeping MS in check. In September last year I went to my normal monthly infusion complaining that I was “walking like person with MS”.  All kind of wobbly and falling overish – and I had to give up wearing heels – very serious from a girl who owns in excess of 100 pairs!!  MS had clearly decided nipping about my heels was boring and started to flex its muscle.

An MRI was duly ordered and the lovely Dr N frowned a lot when he saw the image of my cervical spine, announcing there was “significant disease activity”.  I had failed on the magic juice (I didn’t take it personally!).

At this point he offered either another drug or a stem cell transplant. (HSCT). A tried and effective treatment for some types of cancer but fairly new for MS with some encouraging results.  Having googled “cervical lesions” and “MS” and the likely progression, the word starting with “Q” and ending with “plegia” was a bit too common for my liking.  I said to him “isn’t it a treatment of last resort”, he replied “sorry to be so blunt but it could be a good option for you”.  He’s the one with the “ology” and all the certificates on the wall, so to be trusted I think.

So here I am feeling very lucky to a) have the medical care in place to have identified the problem and b) blessed to be under the care of one of the leading Neurologists in the UK who is championing this experimental treatment.

It’s going to be brutal, grim at times and not without risk but hey – I need to wear these!