Officially rocked it! (says she guardedly.......)

Well dear readers I am now up to the fifth night at home in my own bed.

Some fluffy folk were very pleased to see me.

On Sunday my neutrophils were back from their summer hols and had sprung into action - a "normal"  count is between 1.5 and 8 and mine had returned at a hefty 6.7. 

This news so pleased the Haematology Registrar who also declared that as my other bloods results were looking good.  And as long as I didn't run a fever overnight, my incarceration would end the very next day.

"They said she could run a fever, but I said no, no, no" (Forgive me Amy Winehouse!)

All went to plan  no fever so a wait for discharge papers, a little wait for drugs from the pharmacy and we were on our way home.

My lovely specialist nurse came to visit & said she was now going to include my pretty much "breezing through" on her continuum of "telling it like it could be" for patients.  I know people who have had a really rough and brutal time and I can honestly say I had a day of feeling a bit shabby - the ashen day that had those who love me concerned - but honestly - I've felt worse with the flu.  It's her job to tell people it can be really grim and brutal so if folk have that experience they don't panic and think something has gone wrong.  But a story from the other end helps people be positive and less freaked out by the whole ordeal - happy to oblige.

How did I "rock it" - sheer luck I think.

So since Monday I've been taking it easy but trying to do a bit more each day to build up my strength - sitting about for almost 3 weeks in a 6 metre by 4 metre room makes one a little wobbly but we're getting there.

I'm back to the hospital on the 18th for bloods to check what should be up is up, and what should be down is down, and will meet with the lovely Dr G the Haematologist (or one of his team).

Until then I have to stay away from crowded places where there could be sick people and be careful of what I eat - remember the whole if you can't cook the bejesus out of it, you can't have it?  That's where we are until we have the blood results on the 18th.   Anti bac gel and wipes are my constant companions.

Himself and my lovely sister have the biggest jar of cotton wool on hand to wrap around me but today we ventured out.  We had lunch on the Quay at Poole in a place where we know the owner who was able to give his chef strict instructions of what do with my pizza - cook it to a point where they probably wouldn't serve it and hold any green pretty leaves they may just be tempted to sprinkle.  We sat outside and it was blissful to be in the fresh air (also reducing the chance of sitting close to a sick person).

We then had a wander on Weymouth beach - ice cream is allowed.............

I'll be on antibiotics for the next year and anti viral meds for the next six months to guard against infection as my baby immune system learns what to do - it has forgotten I've had everything and most importantly - doesn't have MS!

Any damage I have already from MS is pretty much here to stay but further action has been kicked into the long grass. 

Medical science is amazing - the staff at Hammersmith Hospital are Super Heroes.  It goes without saying we couldn't have done it without Baxter, Grant and the unnamed American.

My TripAdvisor ratings are that the service is second to none, the level of amenity very good though could do with a lick of paint.  Cleanliness - first class - even an inspector with a little bacteria measuring machine popped in to make sure we were germ free.  Oh - and a shelf in the bathroom would be handy for girl stuff.

So again it's so far so good - there is still a risk of infection.  I'm taking my temperature twice a day in case a pesky fever returns - though it steadfastly remains normal - note this is not a complaint.

Once I see the team on the 18th and the numbers are right I am guardedly saying - we've rocked it!

(oh - and I still have custody of the stupid money headphones - rest and relaxation are so  important to recovery!)

Where we get a glimpse of an immune system and wanton theft.

Well dear readers here am I still imprisoned with the “this patient has no immune system” sign on the door but perhaps a little grateful that things haven’t sped along.

While the rest of the country has been sweltering, the iso wards have a lovely vent over the bed constantly puffing cool, purified air – blissful and all designed to ensure air from the hallway doesn’t enter your room. 

Apparently, it’s much warmer in other parts of the hospital – the wonderful nurses do a bit of hovering about in my room for a chat, they are all interesting people but I'm sure they're just cooling off.

My room has also been voted by the staff as the nicest smelling room –  all credit to Emma Bridgewater’s True Love and Roses, Miss Dior and some lovely body conditioner stuff from Lush.  I was expecting  to have to bathe in anti bac but the instructions to bring in toiletries that your skin is used to, can help against the damage the chemo is capable of doing. Apparently there are lesser sweeter smelling rooms than mine.

So here I am at Day + nine.  (remember we’re counting from the day my baby stem cells were repatriated).

The key things to be done from Day 1 to Day 12-14 are – avoid infection and grow an immune system.  So here's a whistle stop tour from when I left you last…….

Days 1-5 I was spiking little fevers – either early in morning or evening – however these were quickly seen off with a cocktail of IV antibiotics, some straight into the PICC and some ably delivered by Baxter who has been watching quietly from the corner, ready to assist when called upon.

On Day 2 I had a knock at the door from a lovely lady asking if I would like a foot massage.  Now normally no one touches my feet – I am officially over that – bliss.  A wonderful service for patients in what is primarily a cancer ward.  Now if they can just send a manicurist, that would be fab and gain even more stars on my eventual TripAdvisor rating.  The chemo has not yet destroyed my nails.

By Day 6 we appeared to have conquered the pesky little fevers, we’ve progressively withdrawn the antibiotic cocktail to just the prophylactic ones I will stay on for a year, that’s Lou 1 – Infection 0 and all without an immune system.

Day 6 also saw a very low platelet count – they’re the guys that make your blood clot.  A lot of the blood donated is separated into platelets – if you are well and not a blood donor – it’s a great thing to do.  Sometimes people like me will need you and we thank you.

Day 7 was a milestone – the PICC line was removed as it was surplus to requirements.  They often leave them in for the duration of the stay for the quick admin of drugs and even feeding as another side effect of chemo is awful mouth ulcers to the extent morphine or tube feeding may be required – not me – nothing stops me eating, except the hospital food – Jamie we need you urgently!  However, mine was not needed for superhero antibiotics or anything else so out it came – quickly and absolutely painlessly.  Baxter is still in the room but just for company now.

I’ve been spending my time receiving visitors, resting and doing not much really – the days go by very quickly with a steady stream of obs to make sure the numbers that need to stay down do so, and those that need to stay up do, do that as well.

I’ve had some lovely visitors who are welcome; but are required to don plastic aprons.  Now these aprons have no magic protective qualities but act a reminder that you’re in a room with a person with no immune system.  They do give the impression that all my friends have jobs in the supermarket deli. 

"That's a bit over the 250gr love, is that okay"

My biggest confession though dear readers is that I could now be guilty of the wanton misappropriation of a man electronic gadget……..  I was very slow to the whole smart phone thing but over the past few years have made up for time – moving from “what I have does the job” to “mmmmm maybe I should upgrade”.  I love my iPads – both of them, love, love my Apple watch and upgrade my laptop every year or two.

Now himself has always lusted after some really good (read stupid money) noise cancelling headphones.  I have a “reasonably priced” set which I use for long haul flights that slightly dull the noisy child from three rows down, rather than block the din in any really effective way; but I’ve always felt did the job as they only come out for long haul flights.

Some weeks ago, Himself and I were in John Lewis (Aussie readers think David Jones only much posher).  Himself had gently suggested a wander to the section where we might “have a look” at some “better noise cancelling headphones” – he had his eye on Bose (though other brands are available).  I was feeling touch guilty about a bit of a largish shop from the Emma Bridgewater Factory shop (Aussies readers – lovely hand cast and sponged pottery – my collection is bordering on an obsession and an intervention has been suggested), I duly agreed. (to looking at headphones not limiting my collection of lovely pottery).

We tried several brands all recommended by the sales folk – the beautiful thing about shopping at John Lewis is they train their staff so they can offer proper advice about why one product might meet your needs better than another.  We decided the Bose top end noise cancelling ones did just that – we couldn’t hear the clatter from the nearby café, the murmuring from the busy evening shoppers and the shrieking from the children trapped in the pushchairs.

Assent was duly granted for the purchase – Himself said the only difficulty was he was concerned I would purloin them for the next long haul flight so we should buy two sets.  I had no intention of allowing a second set as we were paying what I already considered stupid money and mine “did the job”  I did say however I may take them to hospital as they were pristine and new and wouldn’t be harbouring any harmful bacteria……  Perfect! 

Well dear readers, hospital wards -even nice cool isolation ones are noisy places.  So feeling like a little afternoon nap could only aid my recovery, I donned the said stupid money headphones and something magical happened……  they make everything go away other than the chilled music I had deployed.  Pretty soon I was dreaming of being looked after by Michael Buble and a doctor was having to touch my arm to get my attention…..  We have a dilemma – I think said magic gadgetry is now mine………….  A very kind and generous man is Himself…………I’ll keep you posted……….It’s not even his birthday until February.

And so to my recovery………….

Without further pesky fevers we are just waiting for my new immune system to make itself known to us – it has been a tad slow but we’ve had the first tiny increase in white cell count today so all good news.

So far I’ve managed to avoid the nasty effects of all the poisonous meds and this is an incredibly intensive chemo regime  – just the little fevers which we now seem to have seen off the premises.  I’d say I’ve had the placebos however my immune system has been obliterated and what’s left of my almost completely gone hair is on its way out.

We now wait for the white cells and neutrophils to return from their summer hols and I’ll be safe to head home.  I’ll let you know when that day comes……..

Much love, Lou x

The Main Event

Well it’s done but not over.

When I left you last, I said I’d see you on the other side of the brutal bit…. I can’t honestly describe it as brutal – mostly feeling quite okay for most of the time with a couple of shabby  moments; though those that love me said I went a rather ashen shade for while. (a gentle grey – perhaps that may have looked good on a bathroom wall rather than a face.)

Let’s start at the beginning of this bit……………

First day of treatment is called Day minus 5 for reasons that should become apparent as we progress.

Day minus 5

I am introduced to Baxter who is in charge of pumping the many, many, many litres of fluids, poisonous fluids and helpful meds into me for the duration of my stay. 

Baxter and I have had an up and down sort of relationship but he’s a good guy and on standby quietly in the corner for when he’s next required.  (he can be very loud) though only today a lovely nurse who is looking after me showed me he has a “temporary silence alert” button.  She is my new BFF!)

First dose of chemo is administered along with lots of supportive meds, most of whom have proved to be highly trained professionals.

Because one of the supporting meds for chemo is to ensure the chemo doesn’t destroy your bladder lining, litres of the stuff pour into you around the clock.  What this means is that Baxter has to be attached, pumping away into the PICC line day and night.  Now dear readers, the many, many litres coursing into you have to go somewhere…..  That means countless trips to the bathroom, but this requires unplugging Baxter and taking him with you, bringing him back, unravelling the not so endearing way he would wrap the cord around the lines and plugging him back again. (he may well be planning a second career in knitting or crochet).  By the time you’ve done this it’s time to start the process again.  My TripAdvisor review for the Weston Ward is a comfy chair to sleep in, in the bathroom, could raise the star level.

Day minus 4

More chemo, supporting meds and the addition of the potion r-ATG which comes with very poor press.  The “r” stands for rabbit from which it is derived – it’s a T cell antibody and as the theory is the MS bit where things go wrong is in the T-cell, it’s a major player –T leukocytes are obliterated.  The HSCT community refer to it as the “evil bunny”.  So, we’re adding more litres here folks….  And the bunny juice runs in over 8 hours, I think it was 1 am when bunny left the room.

Prior to the start of this you are provided with a no holds barred list of the unpleasant side effects that may happen with the disclaimer - “everyone is different in their reactions.”.  Side effects from the bunny include “rigours, pain, shivering, nausea, vomiting, itchy rashes, flu like symptoms, raised heart rate. (more on that later)

Well perhaps it was my lifelong love of small furry animals but the bunny wasn’t beastly at all. (Not even in a Monty Python Killer kind of a way).

The day only included one little chemo heave (probably TMI), and a quick jab of some anti sick super hero headed off any further nausea.  The bunny pre med (steroids and antihistamines) make you feel a bit snoozy – apparently this was the point that those who love me didn’t think ash was my best colour – but I sent them off – they have other things to do.  An uneventful night followed  though many trips to the bathroom with Baxter– the bunny had only made me a bit achy – have felt worse with the flu!

Day minus 3

Started with a bit of a bang – literally.  On a trip to the bathroom Baxter tripped over his wheels falling flat on his face…..  the major concern of course for the nurses was had this pulled on my PICC line? (it hadn’t).  I couldn’t assist poor Baxter as I was having a wobbly moment having spiked a fever overnight.  Whether this was the bunny being a little tetchy or an infection with sinister intentions, we don’t know.  You’ll be pleased to know Baxter is none the worse for wear, he was carrying too much weight on the top end – his centre of gravity was a bit unstable.  Now I’m not one to body shame about where someone is carrying their weight – um pot, kettle, black but this was a safety issue. A quick adjustment by a couple of the most fabulous nurses and he is back on form – though a little shorter.

Baxter was ready and willing to help with some superhero antibiotics and some professional grade paracetamol do their magic; and I was back to feeling quite chipper for the rest of the day.

Day minus 2

All the same meds – not a lot to report – feeling the “brutal” word may have been over selling.

A visit though from a Cardiologist .  My heart rate has been a bit high but I do have a rare heart condition – one of the nurses when looking it up found I am apparently one in 20 million!!  Special that’s me!  There wasn’t too much concern, rather just an excited Cardiologist who was running off to show the Senior Cardiology Consultant with a copy of my “very interesting” ECG.  The Doc that diagnosed me 14 years ago was very excited as I was his first ever one.  We knew about this ahead of the treatment but it’s unlikely to cause us any grief – just some excitement in the Cardiology staff room.

Day minus 1

All the same meds with no nasty effects – feeling good all day.

A visit from a lovely lady whose husband was elsewhere in the hospital having had his stem cells harvested – he’ll be doing this in the next few weeks.

The pesky fever returned in the evening – but was overthrown by paracetamol but felt a bit shabby. 

The beautiful part of this day, is that at the end of the chemo support meds, I was released from having to sleep attached to Baxter – his bathroom voyeur days may be numbered.  He can watch me sleep instead.

Day 0 – Stem cell transplant day  (My official stem cell birthday)

Woke up with the shabby, “I bet have another fever”  thought – duly confirmed, paracetamol deployed and an alternate superhero antibiotic ordered; we’re unsure whether it’s bunny or bug but it’s belt and braces here in the iso ward.  The arrival of the stem cells was announced for 11:00am………….

All quite a production, the first to appear was Grant – he appeared to be a cheffy looking water bath.

I pondered whether to ask him for some poached eggs but just prior to this point, the “this patient is now neutropenic” sign appeared on the door – people can come in but alas I am now imprisoned.

I’ve explained what neutropenic means in previous posts. Though if you’re just joining in now, this means I have no ability to fight any bacteria – runny eggs are off the menu for some time so no off menu orders for Grant.

Then a cryo cylinder appeared (I didn’t catch his name – seemed a bit cold and quiet), all we know about him is he has been working since 1977 and he's American.  He should plan a holiday somewhere warm; I recommend Maui.

Stem cells were duly defrosted – my nurse has a third-year placement nurse shadowing (as an L & D professional I love to see good training in action), and when she asked her “what could happen if the temp is too high?”  My response from my corner of the room was (maybe sternly) “do not cook my stem cells” I have too much planned for the rest of the year to start this process again!

Then the kind of non-event but big event happens.  Pre-med with antihistamines and steroids administered. My body will welcome back my stem cells – after all those infants were taken from us 6 weeks ago.  However the freezing process involves preservatives that some people react to.

Baxter then steps up to the mark to administer fluids and the stem cells are hung up and infused into the PICC the old fashioned dripping in way.  I waited for the reaction – none!
A chest x-ray brought to the bed as standard for neutropenic folk, a visit from a lovely friend and a quiet evening feeling just fine and time to write this blog.

This process comes with the disclaimer that it can turn to disaster without notice but for now I think I’ve rocked it –  there could be many chemo related effects to come that are much more serious than the loss of my hardly any left hair, it's a risky procedure ..... so please don’t quote me on the rocking it bit later later…………………..

We now count to days 12-14 when it should be safe to let me out – you’ll hear from me before then.  Thanks for all the social media love.

Lou x

A room with a view and a different dining experience

Well dear readers, here I am firmly ensconced in my room for the next three weeks or so at the Hammersmith hospital.  The alternative to my hospital dinner was dinner at The Ivy……

Let’s rewind ……..

Two weeks ago, I had a treasure hunt of tests to make sure I’m fit enough to undergo the rest of the process.  I was issued with a “marauder’s map” and set loose in the hospital for such exciting destinations as the lung function test lab, the cardio test unit for echo test and ECG, chest x-ray and for no extra charge, blood taken to test for … well everything I think given the number of vials filled.

The day included meeting with the lovely G – Lead Haematology Nurse, and the lovely Dr L who is the transplant co-ordinator.  A provisional date was given as the 7^th June for the main event with the PICC line at some point ahead of that date.  (PICC explanation to follow – though that comes with a squeamish alert).  The key messages from the lovely G and the lovely Dr L was that the date would probably change and throughout the procedure, sound advice to “expect it to be a tad brutal and don’t be a hero”.

Last week I was cordially invited to present to the hospital at 8:00am on the 7^th June (today) to have my PICC line inserted.  We journeyed up to London town yesterday – me, Himself and my sister who is here from Australia in a wonderful show of sisterly solidarity.  We decided to take advantage of the London opportunity and see a show.  We chose the matinee performance of the Mousetrap, it’s run for 65 years so must be reasonably entertaining……  it was…..if you haven’t been, do go.  After the performance on leaving the theatre we practically tripped over the front step of The Ivy – a restaurant that has been on the bucket list…….  They’d just given away their last table but maybe it was our disappointed faces (or the chemo hat) but Theo at the desk said he would guarantee us a table for tonight – I said I was scheduled to be in hospital but I thought a table at The Ivy would be easier to find than a bed at the Hammersmith Hospital – we took him up on his very kind offer……..

So this dear readers, brings us up to today.....

We arrived promptly and after the right length of delay (read enough time to get a cup of tea), the process was underway.  A PICC is a “Peripherally Inserted Central Line” – it’s so they can get lots of drugs and potions in easily without having to faff about with cannulas which can be a bit troublesome.  Here’s the squeamish alert – the line goes in the arm above the elbow and runs right up and around and stops just short of the heart – in my case that’s 41cm – don’t think about it – I’m trying not to.  It’s then to x-ray to make sure it’s where it should be – it is.

We were then told the bed manager was “reasonably positive” a bed would be available today and would phone later in the day.  Feeling my dinner at The Ivy slipping away, we implemented retail therapy and whiled away some hours having a little shop at Westfield.

Back in the flat in the afternoon Himself decided it was only fair to Theo at The Ivy to let him know whether we’d be dining with them, we hadn’t had “the call” so he wandered over to the Haematology Unit to enquire…………  He phoned with the news that yes – my room was indeed available and the ward was expecting me – further reinforced when we arrived on the ward we were greeted by the nurse who indeed confirmed they were expecting me.  Himself and my little sister did threaten to go to The Ivy and send me photos but really I think (well I hope), they’re at the pub around the corner.

So,  I have my room with a lovely view of the brick wall, it’s well kitted out with TV, radio, my very own en-suite and bar fridge for snacks. (sadly unstocked)  There is also the fundamental building block of human happiness - Wi-Fi!

The treatment starts tomorrow – four days of intensive chemo with the added fun of r-ATG (a rather unpleasant potion I’m reliably informed), this will reduce my immune system to zero.  Then a day of rest then my stem cells that have been patiently waiting in the deep freeze with be thawed and infused back in.  Apparently they know what to do and will get straight to work in my bone marrow to start rebuilding my immune system – one that doesn’t have MS – how cool is that?

So I may be a bit quiet for the next few days but will keep you posted when I can.

I am feeling a bit guilty really – so many people are fighting to get this treatment and many are spending large amounts of cash going abroad as they can’t access the treatment here.  I have had it handed to me, it was recommended by my lovely Dr N, the last weeks have gone entirely to plan. (other than a missed lovely posh dinner opportunity – I wonder if JustEat will deliver from the Ivy?)

I don’t want to get political on this blog (I use Twitter for political ranting) but the NHS is a wonderful thing that needs preserving.  It’s full of caring professional people all working harder than they should be with fewer resources than they should have.  When you vote tomorrow, please vote for those who will protect it. 

I'll be here for the next few weeks ......see you on the other side of the brutal bit……………