The week that didn't go to plan

Well this was the week that didn’t go to plan……

Having been warned that this process was going to be a bit of a rollercoaster, we’ve experienced our first little dip.  (and there was I thinking I’d rocked the first stage!)

In my last post I wrote that my neutrophils (the first responders) had packed themselves off for a long weekend leaving me vulnerable to infection.  Well it would appear there were some opportunistic bacteria waiting in the wings, ready to take full advantage of this temporary hole in defences.

Last Sunday we set off for London again to stay in the flat ahead of the harvest of my stem cells.  I’d been feeling a little bit “off” in a “day after an overindulgence of prosecco” kind of a way.  In the evening I took my temperature which exceeded the “go straight to hospital” level.  As luck would have it the hospital flat (clue in the title) is just adjacent.  We phoned and in what seemed like a very short time I was in hospital attached to an IV of several sorts of antibiotics, bloods taken for culture, chest x-rayed and generally fussed over.  Chemotherapy can leave you vulnerable to sepsis which can leave you vulnerable to ….. well ……. dying so a post chemo infection gets you quite a lot of attention.  (and not much opportunity for sleep as IVs are changed and machines beep loudly).

We were a bit concerned as to whether the harvest of my brand new growth factor injection encouraged stem cells would go ahead.  It’s a small window so not much gets in the way, the good news is that it went ahead,

Stem cells are the “you can be anything you want to be” cells.  Stage 2 of this process will see my immune system obliterated  (not a medical term) and the stem cells returned to turn themselves into a brand new immune system.   Essentially the growth factor injections encourage your bone marrow to make millions too many stem cells that then end up in your blood.  The stem cells are extracted from your blood using a process call apheresis – you’re attached to a machine, (squeamish warning) blood comes out of one arm, is circulated through a clever machine call Optia and returned to you having extracted the brand new stem cells.  This takes several hours.  The apheresis experience includes, at no extra charge, a sandwich lunch and light refreshments. 

Thanks to Jess for turning this into a Princess moment!

The good news is that I am a stem cell over achiever – they need 2 million for the procedure and they managed to collect 7.04 million – no second day required even though it's always scheduled.

I stayed on IV antibiotics, passed my ultrasound and ECG tests and the fever abated.  On Wednesday the IV was taken down and I was given the challenge of not running a fever whilst on oral antibiotics & then I could go home.

The lovely Dr G came to see me on Thursday  morning and after lamenting that I was supposed to be a “straight forward and uncomplicated” case, granted me my freedom.  Have I mentioned the lovely Dr G?  I don’t think I have, he’s my consultant Haematologist.  Dr N is my Neurologist but it’s a Haematology Consultant that carries out the transplant, Dr G is mine and he’s a treasure.

So what should have been a day in hospital, turned into 5.  We were unprepared but the shopping Gods always have my best interests at heart as the hospital is moments away from the Westfield monument to serious shopping.   Himself was duly dispatched to Marks & Spencer’s for the every growing wardrobe of pjs. (and some rather lovely cashmere socks - Himself knows how to shop and only received one marriage proposal from sales desk at M&S!)

Tests before I left showed my neutrophils have returned from their mini-break bringing a clutch of relatives, which means I was able to go to a party and catch up with some lovely friends who I won’t see for a while.

We’re extremely grateful for the skilled and caring staff of Hammersmith Hospital – our NHS is something special we should do all we can on June 8^th to keep it.

So I’m back on the sofa – somehow Spring has forgotten her job but we don’t need much of an excuse to light the fire.  Looking forward to a more uneventful week.

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Of blood counts, cats and a thought of writing a cookbook

Well Friday turned into a day of running about.

It was blood count day so my lovely daughter and I set off for London on Thursday evening ahead of a morning appointment at the hospital for blood count and review.

All fairly uneventful in the beginning.  Being able to use a hospital flat is fab – they’re comfortable and well appointed and free of charge to patients.  Without the flat we’d be running up some hefty hotel bills by now.

We appeared at the day unit bright and early to be told I was listed for 2:30pm!  Things were hastily rearranged and blood was duly drawn.  We were sent away to wait for results so grabbed coffee & a bacon sarnie in the hospital cafeteria, checked in with Himself to find him in the middle of his own comedy of errors.  He had one job to do……  Two of the cats Charlie and Edward were due to the vet for jabs, I had offered to change the appointment but Himself did declare himself a man of mature years and judgement and perfectly capable of getting two cats to the vet.  I left instructions – Charlie and Edward to the vet at 9:30 – that’s Charlie and Edward. (James and Murphy did not need the vet)

When I spoke to him at the vet I enquired as to who he’d bundled into cat carriers?  “Charlie and Edward” he said (in that "I know what I'm doing tone" whilst clearly checking) then “oh sh*t, I’ve got James!”. It had apparently taken some effort to bundle James into the carrier involving chasing behind sofas, under beds etc.  All this time Edward was watching on, sat right by the carrier as if to say “um it’s me you should be taking……” 

As I go through this process Himself is going to have to step up to cat responsibilities – it hasn’t started well.

So, I digress – back to our running around Friday…….

Blood results showed my neutrophils at 0.1.  Neutrophils are a type of white blood cells that fight infection – think of them as a first responder in an emergency services kind of a way.  My level is extremely low so chance of infection is very high – not so good. My Haematology co-ordinator (Sara) was in theatre so the nursing staff were doing their best to get in touch with the Registrar to see if it was safe to send me on my way.  We’d handed the keys to the flat so these were duly returned to us and just as we were settling back into the flat I got a call from Sara who said she’d best see me even though I felt quite well - so back to the hospital…… 

Swabs were taken & numbers reviewed.  My lymphocytes are okay (these are the virus fighting ones), red cells (in charge of oxygen) and platelets (in charge of clotting) were okay. (I’m learning quite a lot about blood…)

I was deemed to be safe to come home, instructed to double the injections of G-CSF (the stuff that makes stem cells multiply) and as was now “neutropenic” to stay away from people and be very careful of what I eat.

A neutropenic diet means basically making sure I don’t eat anything that may have bacteria that could be harmful to a compromised immune system.  So it’s no to salad, soft fruit, soft cheese etc.  In short anything that can’t be scrubbed with anti-bac and peeled, or cooked to death is off limits.  There is an upside – no one ever caught e-coli from chocolate – individually wrapped of course.  

This is going to be very dull – may have to get in touch with inner Nigella and write a cookbook. (and I'm only on day 2 of this - is it possible there is a life without brie?)

So it’s back to the hospital tomorrow ahead of harvesting up all the brand new stem cells I’m growing.  I know they’re growing, they grow in the bone marrow so bone pain is to be expected and has arrived, as instructed right on schedule – just as well my relationship with codeine is intact.

This will be my space for the remainder of the day.

I need to stay away from people but with views like this, that’s not such a hardship.

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!