Day +16 to Day +61 (spoiler alert: I stayed alive!)

Now you would think that being back in my own house, would bring a bit of a spark to my step? As would I, quite frankly. But I can tell you, no sparks were going to set my stairs on fire, as Angela and my trusty neighbour, practically carried me up the wooden hill and swiftly deposited me into my bed. My son was already home from school, so much delight was taken by him, chortling over my bald head and general lack of strength. If truth be known, I suspect seeing me so weak and shiny headed, was probably quite scary. But then 13yr old lads aren’t particularly renowned for being in touch with their feelings! And I would prefer to see my kids laughing, rather than crying, any day of the week.

Angela had to shoot off for the weekend and having done her time already, in the trenches of Moscow, we bade each other a fond farewell. At least I like to think it was a fond farewell and that the 💬 ‘think bubble’ 💬 I saw above Angela’s head, wasn’t really saying, “Thank the Lord that is all over, you jumped up excuse for a Russian Princess. Quit your amateur dramatics and start walking up the bloody stairs on your own!”. How prophetic was the conversation, that I imagined she had with herself! Today was (still!) the 27th March. And I wasn’t able to walk up the stairs again until the 11th June.

I had experienced some trouble breathing directly after the stem cell transplantation on 12th March and the occasionally whilst still in Moscow. But at that time, it felt no worse than a mild hayfever attack. I am not asthmatic, but used to use a steroid inhaler to help widen the airways, during hay fever season. Tree pollen was always the culprit and as Spring has seemingly sprung, almost overnight, Dr Federenko replicated my occasional inhaler, with a smart new Russian version, so all seemed fine and dandy.

But I was now home and the suspect trees were nowhere to be seen. And I still couldn’t breath, no matter how many inhalers I used. And it was getting worse. My sister had arranged for my GP to call a couple of days after my return to the UK, but my impersonation of Darth Vader having an asthma attack, was concerning enough to warrant a call to the on-duty home visiting doctor. Doctor arrived, checked pulse, blood pressure, listened to chest and declared I was fine. Really? REALLY? Well colour me surprised; I’m obviously still imagining things? I may be missing my dancing aliens now I’m away from ISO, but am now imagining I am a lead character from the Star Wars Trilogy. And yes, I know there are more that 3 Star Wars films now. My grip on reality has not sent me completely gaga just yet.

Buoyed up by the Doctor’s diagnosis that I was “just fine”, I continued my laboured breathing and inability to move. Even getting out of bed for the loo was impossible. I was totally incapable of even sitting myself up in bed. My poor sister and niece, had to keep pulling me up to a sitting position and then propelling me to the bathroom. Not sure their backs and necks have recovered even now. The rest of my first weekend at home slipped by in a haze of sleep, eat, loo, repeat. And try to breathe. No seriously, this lack of being able to breathe properly is getting completely ridiculous now. What the hell is happening?

Enter the arrival of my own GP. Surely he must be able to osee something really isn’t right? Would my telling him, that every breath feels like my last breath, possibly give him a clue? How about when I tell him, that I was with my younger sister Coleen, when she died of liver cancer at the age of 24yrs and therefore I know exactly what the “death rattle” sounds like? Well apparently NO! None of those comments help at all. Nor does the withering glance he gives me, that appears to signify, “Yawn…drama queen”. Or could that glance really be saying: “I think I am out of my depth here. Let’s leave as quickly as possible, and hope she goes to A&E tonight instead”. Tough call deciding what the dear man was really thinking? Last breath. Death rattle. “Sorry ma’am, which way is your front door?”

So I soldiered on; except I was still getting worse. A plethora of friends from the village arrived to visit. I had never thought I was over-reacting, but even I took note, when one friend who is a nurse, remarked that my lips were turning blue. Blue lips. Inability to breathe. No more messing about now; friends who care are significantly more trustworthy than any bloody local GP. The ambulance was called…

It was such a relief to be whisked off to hospital and to know I was being taken seriously at last. I think the oxygen pump, flashing blue light and paramedic calmly saying, “Stay with us now”, made even laid-back-me think twice about closing my eyes. It had been very difficult for my 12yr-old daughter to see her Mummy being swiftly loaded into an ambulance. The paramedics had let her come into the ambulance, and shown her I was being helped to breathe, and allowed her to give me a “wish Mummy well kiss”. I was very grateful for their sensitivity in NOT asking my daughter to “say goodbye to Mummy” and for telling her I would be settled into a hospital bed before she had even got to my sister’s house. She was naturally very scared and very tearful; I can still hear her wail of “Muuummmmy”, as they peeled her off me. My son had returned to boarding school just that morning, so fortunately missed the somewhat unexpected tour of the inside of an ambulance.

Canterbury Hospital was on alert for my arrival and I was taken directly for a CT scan to see what was happening. Last breathe, death rattle; the NHS actually can move at speed when really necessary! And the results were soon in… bastard pulmonary embolisms (blood clots) blocking both lung airways. Damn, I should have worked that out myself. The number one symptom of a pulmonary embolism is, ‘an inability to breath and feeling like every breath is your last one’. Cripes, not like we had any clues then, eh, Dr Death? 😱

So, let’s just fast forward the next couple of months. To be honest, focussing any further, on the VERY rare side effect of pulmonary embolisms, is not going to value add, in any way, shape or form. However, a few observations of seeking hospital care, so soon after having HSCT for MS, in another country…

The medical world, as a collective body, were TOTAL unable to cope. If the whole situation had not been so dreadful, it could actually have been quite funny. After two nights on oxygen and major blood thinners, in a cancer ward isolation room, it was obviously decided I was on the mend. Yikes, now what do we do with her, shrieked the collective NHS gurus? Off to a bed in the Critical Decision Unit, so they can make the… err… decision? Brilliant, the lady opposite me in a 6-bed ward, has pneumonia. And the one next to me has suspected shingles. You couldn’t make this up; so I summon the energy to call the nurse, who appears after 20 minutes. I try in vain to explain that I am still severely immuno-compromised, but all I receive in return is a blank stare. Zut alors, I must still be speaking Russian, the endless pitfalls of being a former Romanov Tsarina, are still tripping me up. No one seems to understand me, and there is no translation from English into the local dialect known as “NHS”? Not even my trusty foreign language app from Russia, lists a language called “UK Hospital Speak”. Good grief, communicating with non-English speaking Russian nurses, was easier than this!

But not to worry, deep breath (if only I could!) and wait for a decision to be made. And 48 hours later, the decision is finally made… and it’s off to the Renal Ward, we jolly well trot. Yes, that well known home of post-bone-marrow-transplant patients! Like I said, you really couldn’t make this up? Maybe they saw the term apheresis, written on my notes somewhere, and decided it was meant to say dialysis? Same machine, different functions? So, collective doctors… have my kidneys given me pulmonary embolisms, after I had tried to fix them with a bone marrow transplant? Well, obviously it’s kidney related, welcome to the Renal Ward, madam.

I spent a week on the Renal Ward, barely able to move. Some nurses were kind, some were disgraceful. My bladder was out of control, and waiting 30 minutes for the commode to arrive, was never going to work. Just as well that wearing adult diapers, was the de rigeur in Moscow. But the NHS seemed to be incapable of organising even that one piece of vital equipment. Their solution is to catheterise everyone. Well not happening with this immuno-compromised Princess; no way was that little haven of cathode germs is going anywhere near me!

Suffice to say, supplies were brought in by various relatives, friends and neighbours. Yay! My overactive bladder can be the talk of the village. Just as well any semblance of pride, flies out the window, once an MS diagnosis is made. I would like to say the nurses were fabulous, but they weren’t. The highlight, being left for almost an hour in a damp bed, because they were too busy discussing their holiday plans. You see I couldn’t move much, but my hearing was just fine. It was night time, the corridors echoed eerily, with talk of Spain and Greece and Florida. My mind whizzed merrily around, with thoughts of cystitis, urinary tract infections and dry sheets. How could they not hear the buzzer? Was being stone deaf a definitive part of their job descriptions? It will be no surprise to learn, that aforesaid hospital has actually been in ‘special measures’ for the last 2 years.

After an entertaining week in Canterbury Hospital, it was time to take my Renal problems off to a Rehab Facility. Yes, I know there is nothing wrong with my kidneys, but it was much easier to just go along with their delusions. Why rock a boat that is already sinking? 😈

The rehab unit was part of an assisted care facility. The ground floor was chock-a-block with permanent residents of the upper age range. The first floor was full of rehab patients. One hour of PT each day – hey, this is a state funded healthcare system- but for me anyway, it was all about keeping moving. I quickly swiped a Zimmer frame walker from the Occupational Therapist and slid around my room as much as possible. By the end of week one, I was already shuffling up the corridor. Hilariously, the staff kept poking their heads, out of the nursing station and saying, “Where are you going?” I guess they may have been trained on the ground floor, where escapees were not considered acceptable! They seemed surprised I was pushing myself so much? In turn, I was surprised no one else was trying to walk as much as possible? The four weeks I spent in Rehab passed by quite quickly in the end and most days I was able to move ahead with my recovery. I was frequently sick and constantly seemed to have an upset stomach. But I was in a decent sized private room, with a large ensuite bathroom, so I just got on with it all. I had no idea why I was still struggling so much. It was like I was getting all the chemo side-effects a month late? I felt worse on Mon, Wed and Fri, which were the antibiotic days, so after a few messages back and forth with Dr Federenko, it was decided to drop the Bactrim. I did seem to improve a little, but still didn’t seem to be properly recovered. My bladder, which had been pretty ‘lively’ since my MS diagnosis, was now way beyond amusing. My best day involved going to the bathroom 26 times in 24 hours. Considering it took me 5 mins to Zimmer frame myself to the loo, and then 5 mins to slide back to the bed, I can truly say that day was ‘interesting’. The head nurse on that ward, declared I must have a touch of irritable bladder syndrome. You reckon? And there was me, thinking marching to and fro to the loo, was all part of my Physio training!

In between slip-sliding around the corridors, I spent time reading and watching TV. Luckily I have always been a bit of a fiend, for even a half-decent movie and thus spent a fair amount of my time watching Netflix. Both kids came to visit me a couple of times and were highly amused by my incapacity. They seemed pretty unfazed by it all. I guess when your mother has just spent 5 weeks in Russia, then a few more weeks just round the corner, felt like no big drama for them.

Eventually back home on Thursday 30th April. My lovely son and niece, had rearranged my living room to accommodate a hospital bed, as getting up the stairs, was still not within my movement repertoire. It was fabulous to be home and be able to just sit and see my own home comforts all around me. My son returned home from boarding, the day after I got home and apart from a fearful headache, I was slowly relaxing again. But wow, that headache was building up and my shuffling ability seemed to have slowed down even more. Finally Sunday evening arrived and I started to prepare myself for my son heading back to school in the morning. And then very unexpectedly, I just couldn’t move. Literally my feet felt glued to the ground. Leaning heavily on my walking frame, my poor lad had to sit on the floor, and slide my feet gradually, until I got to a seat. I was very aware something really wasn’t right. All through rehab, I never doubted my walking would come back, but this was different; my whole body felt like jelly, and I calmly whispered “Temperature, now please”.

Beep, beep, beep. What does the thermometer say, my boy? Pardon? 39.6C… holy fires of hell, that’s not good. Not good at all; I am only Day Zero plus 51 days and no way should I be burning up with such a high temperature. Pulse rate? Seems a bit fast, No need to panic; you know the drill. Call an ambulance, mention you have recently had chemotherapy and a bone marrow transplant and politely remind them to keep checking for sepsis. Despatch son to stay the night at a friend’s and plead with the ambulance NOT to take you back to the hospital in Canterbury. I know we are meant to be grateful for a Nationalised Heath Service, but my previous stay in Canterbury Hospital had been more than enough for one lifetime. So off to Ashford Hospital we go, to another barrage of blood and urine tests and IV fluids and more incredulous faces when I explained my recent trip to the land of the fabulous babouska doll. Jeez, you’d think I was the first person from the UK to ever go overseas for medical treatment. Guys, wake up… we’re in the 21st century now; medical tourism really isn’t that big of a deal. Initial tests pointed to urine infection, but I’d had no symptoms? As the days went by, it was confirmed that I had an e-coli urinary tract infection. The world of HSCT is pretty small, so in no time at all, I had made contact with my HSCT cyber-buddy Kate, in New Zealand, who I knew was also back in hospital with a UTI as well. “No messing around” she said. Actually being a Kiwi she actually said, “Ni missing arrind”, but I knew what she meant. It is very common for post-HSCT patients to get UTIs, but they’re cany little buggers, and are really hard to shift. Five days of IV gentamicin was her advice, no alternative!! Boy, that was a fight with the medical staff; they kept taking me off the IV and trying tablets, which I would then promptly throw up, allowing the UTI to flair up again. Eventually after several days of squabbling, they finally gave me 5 straight days of IV antibiotics and hey presto, the UTI finally gave up it’s fight. Shame we wasted 4 days first squabbling over what treatment was required.

Finally on 12th May, I left my last hospital. 4 different hospitals in 8 weeks, more than enough medical excitement for a lifetime. So home now please, Mr Ambulance Man. HOME… at last.

Still Alive! (Day -4 to Day +15)

Now some of you may be shocked, to have received a notification, that this blog has been updated! Yes, I know… I stopped rather abruptly half way through treatment. And of course, those of you who ever listened to the Neurologists (apparently some people do still give them ear space), will undoubtedly know that HSCT will kill you. Ergo, did I die?

HAHAHA! Still alive you suckers. No, not you dear readers; the idiot Neurologist suckers who said I’d die. Now in reality, I did have a pretty tough time, after I stopped blogging. But you see it was getting really difficult, to write sensibly, while dustbins and aliens were dancing across my ceiling. Yes, folks you guessed it, I was one of the pretty rare cases, that through some frightful reaction to “something”, ended up with hallucinations. Astonishingly, none of which contained either George Clooney or Adam Levine. Lucky old me just got boring aliens: albeit strangely enough with American flags! Guess that’s a perverse shout out to the Texans that were being transplanted at the same time? Or maybe my alien hallucinations were somehow connected to Neil Armstrong and his moon landing? “Hey, Neil, recall your aliens immediately; they’ve invaded my ISO room”.

Am not entirely sure how to now continue this blog? For the sake of continuity, do I pick up where I left off? Or fast forward to current day? Well, I was encouraged to set up this blog by the good and the great, that is George Goss, who was transplanted in Heidelberg in 2009. In fact I may never have heard of HSCT for MS had I not found George’s blog (on the day I was diagnosed!). His advice was that in years to come, I will be glad to reread my musings and that as my children get older, they will appreciate it more too. So, let’s fill in the missing gaps…

Sunday 8th March (Day -4) to Tuesday 10th March (Day -2)

The next 3 days of treatment were Groundhog Days as each day brought more chemotherapy and saline flush. The idea is to get the chemo into you to do it’s destruction of the MS cells and then flush it through as quickly as possible, to prevent any additional damage to other healthy cells and organs. Just give it enough time to destroy the MS and every other rapidly dividing cell in your body. Hence the loss of hair and shedding of skin. Who knew that hair and skin cells were rapidly dividing? Well, we all know now, don’t we? Luckily Day 2 to 4 of chemo were easier having worked out on Day 1 which set up worked best. Chair, table, PC, DVD’s, water and many easily digestible snacks.

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Plus I now had a portable drip tree, so could wheel myself into the ensuite loo as often as needed. Which was so often, it was actually easier to set up camp in the ensuite, with PC precariously balanced on a chair, showing the entire series of House of Cards on Netflix. I bet when Kevin Spacey filmed that series, it never occurred to him that a UK chemotherapy patient would be watching it whilst perched on a toilet in Moscow? By the end of 4 days of non-stop liquid, my feet had also managed to swell outrageously. Fortunately I am aware one needs to raise the swollen feet to above heart level, in order for the fluid to drain. So it seemed perfectly sensible to sleep in the following position.

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Well at least it seemed sensible until I woke in the night with excruciating leg pain. “Oh no” she thinks to herself, “It’s the dreaded chemo bone pain everyone talks about”. Ha! No chance of it being something expected with me… No, my legs had locked into a hideous poker-straight position, which required rolling out of bed, to the loudest knee clicks in history. And then hopping around the room shrieking “Ow, Ouch, Yikes”. Note to self; accept the swollen feet and do not try to self-repair, for fear that self-repair and self-destruct are too closely related.

Wednesday 11th March (Day -1)

Today was the “Grand Old Move Day”. Otherwise known as moving from the 2nd Floor treatment rooms, up to the 3rd Floor isolation rooms. Of course after being on the 2nd floor for over two weeks, stuff is liberally distributed all over the room. And it is also time to send down to the basement storage, all belongings that aren’t going into ISO with you. I had already decided to wear my own clothes in ISO, so had separately packed 12 days of clean outfits. And my PC, movies, books, iPad, iPhone, basic toiletries made the ISO cut too. A very efficient system works, that involves putting all storage items into your suitcase and all your ISO gear into a shopping trolley! Then wheeling said shopping trolley up to the 3rd Floor. See, even when in hospital for a month, you can still have that well known supermarket experience known as ‘wobbly wheel syndrome’!

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No sooner had I settled into the 3rd floor, to luxuriate in the peace and quiet of a floor full of patients in isolation, than the handy haircut lady arrived with her trusty shaver. Naturally photos had to be taken, despite Dr Federenko being the only ‘photographer’ available! He sure is one multi-talented Haemotologist!

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Thursday 12th March (Day 0)

Having slept reasonable well in my new room, I woke to brilliant sunshine and a weird sense of calm on transplant day.

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And a cold head. Bald may be beautiful, but it’s also a bit of a shock to the system.

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The alien hallucinations had not yet arrived, so I spent the morning sorting out my room and deciding on which music to listen to during the transplant. So very different from UK hospital experiences. Somehow, I don’t imagine a UK transplantee gets to have photos taken and their own music blasting from their iPad, whilst receiving a stem cell transplant? My music of choice was actually an easy decision: It’s A Beautiful Day by Queen. No one else could have serenaded my stem cells quite like Freddie Mercury. And as the album continued to play we also got to hear Let Me Live and My Life Has Been Saved from the same Made In Heaven album. Excellent choices Freddie, couldn’t have said it better myself.

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Around about 2pm my ISO room was all set up for the transplant and I was tucked up neatly in bed.

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Anastasia arrived and using my iPhone, took several photos, including at least one classic Anastasia photo bomb!

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Dr Federenko brought in my stem cells and the process of injecting six vials of stem cells into my neck port began. The whole transplant took about 30 minutes and for most of it I felt fine.

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In fact it was all over in no time and I was lucky to not feel sick or faint or anything. Just some pressure on the chest and for me, some difficulty breathing deeply. At some stage I recall calling out to Sarah McGuiness’ dad as he walked past the room and asking him to help me sit up. My ability to slide down the bed was still happening, even on transplant day! I guess I slept for a while… I remember being quite cross when Anastasia came in and woke me up for the New Life Ceremony! I’ve never been good at getting out of bed, even if it is for a ‘New Life’.

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Friday 13th March (Day +1) to Sunday 22nd March (Day +10)

Although I had felt somewhat *odd* directly after transplant, my fellow Norwegian transplantee Sonja sat with me and gently reminded me I was pumped full of drugs and the ‘odd’ thing would be if I DIDN’T feel peculiar!

After the initial weird feelings, I was reasonably okay during the first few days of ISO. But without doubt something was starting to slide. I found it really difficult to sleep and became aware I was getting confused. Whether it was the steroids, or valium, or the beginning of a UTI, or even lack of oxygen due to the growing pulmonary embolisms, I doubt we will ever know? But I was getting weaker and weaker each day and even got to the point where I didn’t even have the strength to hold cutlery and had to be fed by the nurses. Getting to the bathroom became a major event and I can recall gripping onto the furniture in order to stay upright. When I did sleep, I had the most bizarre dreams. I even recall dreaming that I had died and was in a hospital “on the other side”. But I was also able to get some logic into the strange world I was now inhabiting. In the middle of the night, if I woke, I would move items on my bedside table, so that when morning came, I knew it was a new day. And on some level, I also realised that I was reacting badly to one or more of the drugs. I even scared the life out of one of my nieces back in the UK, by calling her and saying I was being given “the wrong drugs” and that I needed to come back to England. And there were a lot of drugs!

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But to go back to Endland? That in itself, indicated a loss of my grasp on reality. I mean think about it? Who in their right mind would be wishing for a return to a UK NHS hospital, as a preference to the incredible care of the staff in Moscow? Without a doubt, I was well and truly living in a parallel dimension!

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Monday 23rd March (Day +11) to Thursday 26th March (Day +14)

Reality started to creep back into my world, aided enormously by the arrival of my good friend Angela, who was charged with the task of getting me home to England. No mean feat considering I was unable to walk by now and could not even get myself out of bed unaided. I had also started finding it quite difficult to breathe and was easily getting totally ‘puffed out’. I have never been asthmatic, but do have certain allergies (cats, dust, certain trees), so have used inhalers before. To me it felt similar to the wheezing I’d get after being around certain cats, so Dr F. brought me a couple of inhalers to try. They seemed to help a little, but what we were all unaware of was the presence of pulmonary embolisms, traveling calmly into both lungs. There is no way at all that they could have been spotted at that stage. I am sure had I been still in the Pirogov over the next few days, then Dr F. would have soon realised something was seriously wrong and whisked me off for a CT scan. Instead I wheezed my way toward leaving day, unaware that I was actually getting very, very unwell.

But being a pair of troopers, Angela and I still obeyed Dr Federenko’s command to get out and get some fresh air! I assume my blood work meant I was no longer needing to be isolated. Or possibly Dr F. realised that it was time to bid farewell to the dancing aliens and launch me back into the real world! Angela, of course, drew the short straw and had to push the wheelchair. I of course, drew the straw that stated I was a former Russian princess and luxuriated in being chauffeur wheeled around the hospital grounds.

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The delights of packing also awaited Angela. All my stuff was brought out of storage and sent back from the laundry, to be added to the items already in the ISO room. Now I have to admit, after all my years living out of backpacks and relocating all over the world so many times, I am a bit of a ‘packer extraordinaire’. But after intense chemo and two weeks of hardly moving, my only ‘extraordinaire’ ability was to watch in awe as Angela managed to cram everything into my suitcase. The Harry Potter Russian dolls, the tiny China linked elephants for my daughter, a heavy bejewelled frog for my son, clothes, toiletries, DVDs, books… on and on it went. Sheer determination got the lid of the suitcase closed and London started calling me.

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Friday 27th March (Day +15)

Our flight was at 14:30 so we had a few hours to get set first thing in the morning. Angela arrived from the Vega, with her luggage at around 8:30am. I managed to still find a few bits and pieces to stuff into her suitcase too. I had known in advance that I had over-shopped (!) and would need overflow space, so had asked Angela to come out with some space in her suitcase. We had our final meeting with Dr Federenko who summarised the last month and gave me notes written in English to bring home with me. Anastasia came to the airport with us, in a car provided by the hospital. I think I was still raising red flags with my lack of walking ability and general lack of strength. I have used wheelchair support at airports before, but previously have always been able to walk up the stairs, or from the gate. Well that wasn’t happening on this flight! The support chaps had to wheel me onto the plane (luckily no stairs), which certainly drew the attention of the plane crew. In the blink of an eye, the stewardess had rearranged everyone, to give Angela and I two entire rows of 3 seats each to ourselves. Kind of amazing the power that a face mask and bald head can have on ordinary members of the public! Plane food is to be avoided at all cost directly after transplant, as the chances of food poisoning are just too high to risk. But no one said Gummi Bears were off limits, so I spent the majority of the flight scoffing an entire tub full. And drinking small bottles of water that had not been pre-opened.

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I have to say, I think Moscow to London may have been the only flight in at least the last 20yrs, that I have flown without an alcoholic drink. I’m not a nervous flyer, but being on a plane, without a glass of bubbles, definitely felt alien. Good grief, DON’T mention aliens; surely they are safely tucked up back in Moscow!

Landed at London Gatwick at 15:50 local time, no delays on Easyjet! Wheelchair support, find Angela’s car, Friday afternoon traffic on the M25 (the UK’s worst road), more water, more Gummi Bears and by 6:30pm, I was back in my own house. Little was I to know that the worst of my ills were just about to start…

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Fri 6th March (Day -6) and Sat 7th March (Day -5)

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So, why does this update start with a screenshot of a calendar highlighting 7th March? National Pig Day (USA) is 1st March. That being one of the days when the Americans, celebrate their constitution, BEFORE it was actually “amended”. Back then it was just known as “Point Two On My Big List: The Right To Bear Pigs” (who’d be a midwife?).

The Ides of March is 15th March and St Patrick’s Day is 17th. So why highlight the 7th. Aha, you think you’re clever now don’t you, because today is the 7th March? Nope, not the reason. Patience, dear students of my obvious, but somewhat baffling, descent into total lunacy… the answer will come at the bottom of this update. Stop it! Stop scrolling right this minute. Yes, that’s yoooouuu, who always got 100% at school, without even trying.

Good grief; have just realised that there was a mention of the Ides of March above… absolute top idea to be writing about Julius Caesar’s ASSASSINATION while in Moscow where that type of thing would never happen… swiftly moving right along…

Plus, it’s suddenly occurred to me that this year I really will be needing a wig by St Patrick’s Day. (note to self: spend time in ISO dying the gorgeous Myra Hindley wig, a fetching shade of green). This of course has just reminded me of some years ago, when a very good friend of mine also hit a follicle challenge in her life, just as St Patrick’s Day was approaching. I mooted the idea of mailing her a green wig as a joke, so that for just one day, she could blend in and feel normal, not bald. Disappointingly, but not altogether unexpectedly, she declined the offer. Later that same day, I was having the time honoured British tradition of Sunday Roast in a local pub, when suddenly with no warning, or pan pipes, or Irish Boy Band fanfares whatsoever, in walks a girl sporting a long green wig. Really long, really green, just perfect for scaring small children that think ‘Sport On Sunday’ means catapulting their roast potatoes and sprouts all around the restaurant. Figured I really needed a picture of this wig; we were still several weeks away from St Patrick’s day, so green wigs were in short supply (rubbish, they are NEVER in short supply – Ed). So I politely requested a photograph, to which she happily agreed. Well she was hardly likely to say, “Oh no, please leave me alone, I am so very shy and hate attracting attention”. Nor was she about to start singing Lady Gaga’s “Paparazzi” song; one makes a very conscious decision to actually start wearing your green wig before March 17th. Emboldened by her genuine camaraderie, I ventured further and asked where she had actually bought the wig and why she was already wearing it? Holy Mother of St Patrick! She looked aghast, crestfallen… broken. “It’s not a WIG. This is my own hair. Why would it be a wig?” Why indeed? They certainly didn’t make ‘green’, a shade of hair colour, when I was a child. Oh, except maybe my brother with the sinus problems… his hair was frequently green, but let’s not dwell on that particular genetic aberration.

Okay, final few words regarding treatment these last couple of days. Yesterday (Day -6) was scheduled as a reserve day for stem cell collection if necessary. Just kicked back, woke late, still under the covers when the hair clipper lady arrived, happy to just chill. Food intake changes now in preparation for chemo (and the impending vomit fest), so I had been left two Nutricia Nutridrink shakes and the pill that helps line your stomach pre-chemo (like that’s going to work?).

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Breakfast was rice pudding (The Optimum Cookbook of the 1960’s Nursery), promptly followed by a mini strawberry shake and finally for good measure a smidgen of Milka chocolate (brand names in case this blog goes viral: product placement and all that – Ed!). Must admit, I knew I’d overdone it straightaway. I’d just done everything we all tell our kids not to do: gulped, guzzled and gorged. Not to worry, it’s relax day. Anastasia appears in my doorway, just as the gluttony ends. “Okay, you come now”. I do WHAT…? “You come now for chemotherapy PICC line”. Phew, a misunderstanding, breathe again. “Lovely Anastasia, chemo is tomorrow, today I rest”. Like hell you do madam, chemo tomorrow, new catheter line today. Do not, and I repeat DO NOT, fill your stomach with rice pudding, strawberry milk and rich chocolate, just before a minor medical procedure. The PICC line doctor, would have had every reason to be suitably horrified, had I thrown that lot up in her room. And I can tell you, it was so close… sheer willpower must have kicked in.

Chemo today was fine. The first day of chemo (Day -6) is early in the four day chemo journey. Like the apheresis stage it is all about planning. A huge amount of fluid goes through in a matter of just 3 hours. My drips were mains electric powered, so I could not move away from the bedroom area. Diaper up folks, no choice unless you get a portable drip tree and can just wheel it into the loo! Embrace the diaper culture, make jokes about them; it’s the only way to go (for once, pun actually not intended).

Finally, why the 7th March? Well did any of you notice the calendar was 2014, not this year’s? On the 7th March 2014, after a week in hospital, the most socially inept neurologist on the planet uttered the now legendary words, in front of half a dozen lackeys, while I sat totally on my own. “As we suspected it is Progressive Multiple Sclerosis”. Thanks my good man, I was hoping for mild spinal damage from all the years snow skiing, damage that could be fixed with keyhole surgery. Thus EXACTLY one year to the day after diagnosis, I was receiving my first infusion of MS ablating chemotherapy. Somewhere, within that fact, lies some kind of pure coincidence, or poetic justice, or divine intervention; whatever your belief system will choose. Right now, I’ll just go along with any and all of those beliefs.

Wed 4th March (Day -8) and Thu 5th March (Day -7)

Roll up, roll up and get your two days for the price of one!! Some may know what apheresis is, and some may not, and of course some could not care even if their bone marrow was on it’s last ever sparky little stem cell. My kids for example: no desire to know that Mummy’s blood just spent 2 days being extracted and then recirculated 4 times through a machine similar to a dialysis machine. Not unless they get a free toy with each bag collected and not even Dr Federenko’s protocol includes replica McDonalds toys in each Happy Stemmie Bag.

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State of the art machinery here, actual extraction machine made in the USA and the stem cell bags from Scotland. Where? Scotland? Oh yes, of course, that hotbed of stem cell technology north of Hadrian’s Wall. Aha, lightbulb moment, maybe this explains all the porridge; you buy our stem cell bags and we provide you with more free porridge than you can shake a stick at. All inclusive, no quibble, money back guarantee, part of the same delivery. Cool. No sanctions when it comes to the serious business of Russian breakfasts (or evening meal, versatility being the major attraction of the once humble rolled oat).

Laying totally still for five hours may appeal to your average lounge lizard, but for your average ‘gal about town’ it involves much meticulous planning. And ye gads, all at 7am, like I just morphed into a morning person overnight? We can skip briefly over the logistics of how you can or can not use the loo during stem cell collection. This is a child friendly blog here and toilet talk will not be permitted. “Are you listening to me over there by the latrines”? I said, no need to discuss adult sized diapers.

Calm start…

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You can see the impending slide…

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Main organising for apheresis days is snacks, books, DVDs, body position and more True Grit than a John Wayne movie. So naturally I get the body position all wrong. Yep, five hours of gently sliding down the bed at 1cm every 1.5 minutes meant that by the end of the five hours, my head was under the covers, my PICC line was hanging onto my jugular for dear life and both feet had shot through the metal bars at the end of the bed. Enter Dr Federenko: bright smile, happy tone of voice, “Mindy we are finished. Are you alright? Where are you? Hello. Hellooo…”. Muffled reply from under the covers, “I’m in here, I kept slipping and couldn’t reach the call button. Can you pass me the oxygen mask, please? No I’m fine, really, just a bit short of breath”.

Extricated from the bedcovers, I attempted to haul myself up into a sitting position. Yes, well that may have been easy earlier in the week, but fab sister had got to work on her ‘hospital bed corners’ while my back was turned. When growing up we all lived in a house so cold that you virtually broke your neck each night, racing up the stairs between the warm living room and the icy cold bedroom. A bedroom that could make that wretched movie “Frozen” seem like a night on a tropical island. So hospital corners on the bed were an ABSOLUTE NECESSITY. Because otherwise your hot water bottle (which after all was the only heat keeping you alive) would launch itself out of the bottom of your bed, and hit the floor with that almighty gut wrenching thump that said “Whoa, little child. You’re gonna freeze now, your feet are gonna go black with frostbite and fall right off”. Well those memories take a long time to fade, so when my feet were all tangled up in the sheets and stuck through the metal rungs at the end of the bed, it may not have been Dr Federenko’s finest hour to shriek at me “Where are your feet?”. I mean of course I knew they were in their somewhere, but for a split second I really was 6 years old again and my frost bitten feet had just hit the deck. Hospital corners… no discussion when it comes to hot water bottles, not so necessary when trying to relax and collect vital stem cells.

Other logistical first day errors included positioning the tray table over the bed too high to be able to see it properly. Remember I was on an uninterrupted downward slide for 5 hours. So what started as a reasonable set-up at 8:00am had rapidly descended (literally) into chaos by the time breakfast was served at 9am. Language barriers prevented any possibility of explaining anything to the delightful breakfast lady who pops my bowl of… porridge? creamed wheat? rice pudding? just above my vision line. No choice, but to go for it… pour a sachet of sugar into the bowl and pray that today isn’t the day that the chefs decided to try serving green pea soup for breakfast. This is Russia, where in all honesty some evening meals really have been porridge and suddenly green pea soup for breakfast isn’t as left of centre as one thinks and the trepidation in advance of that first spoonful makes perfect sense to me now. Phew, it’s not soup. Or is it? (You calling my food bland? – Chef)

I know we are avoiding all the lavatorial discussions, but I just need to share one last piece of irony. One worries about the possible dampening down of the bed as the process goes on (and on, and on, and on), but I already had a cunning diversionary tactic ready. It is a fact well known to us all for many years that you can’t drink water properly when lying down. But I temporarily put that fact out of my lesion-loaded brain, just as the machine whirred into action. Cue a quarter of a liter of water pouring all over my face and neck and pooling nicely on my pillow for the NEXT FIVE HOURS. Yep, I am the only patient who managed a soaking wet bed before even starting. No wonder I was dreaming of burst water bottles and feet falling off.

Do we just wonder a little bit if they may have my drug dosages too high…

So now back to those who do know what apheresis is and are interested in the finer points. I collected 2.1million/kg over the two days. Had I not eaten so much ice cream all summer and weighed my normal range, I would have had bazillions to spare, but only 2 million/kg is needed so I dodged the bullet of a third day of collection. Thank the lord, another lie still and play dead day, when you really are suffocating under a pile of damp sheets, with all blood to your feet stopped at shin level, would not have made for a happy camper.

“Hey Mummy, where’s my free toy”

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That’s it. Stem cells collected. Day of rest tomorrow (Friday) and then chemo starts on Saturday. Yay! More drugs, bring it on…

Revolting photo for all the kids
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Day 8 In The Hospital. Day -9 Until Stem Cell Transfer

Okay, so the eat, (choke), repeat days are getting a wee bit dull now. I mean we’ve put the food world to rights, can’t discuss money or religion and even my treatment spreadsheet has lost it’s power to frighten the bejeebers out of everyone. What is a girl to do? This blog has a standard of wry wit and humour to maintain and the raw material is winding down now the real procedures start. Bolshoi Ballet now a distant memory.

Snippet of spreadsheet to show expected plan. Day -9 today.

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The cleaner is the first daily visitor, sometime around 8am. Yikes, only been asleep about 5 hours by then, so no chance of any deep and meaningful conversations at that god-unearthly hour. Actually, no real chance of any conversation at all seeing that my language skills have never really included Russian. I naturally took a term of Russian evening classes WAY back in my youth, when doing an evening class, or joining a gym, or shopping on a particular night of the week was supposed to conjure up the perfect boyfriend. Total strike out; barely learnt the Cyrillic alphabet and my fellow students never struck me as future Vodka-swilling and Caviar-quaffing sole mates.

Anyway after waving sign language at the cleaner that roughly translated as “enjoy cleaning my bathroom” and her waving back sign language that appeared to say “you lazy daughter of Czar Nicholas II, get out of bed and change you own loo rolls” we both smile sweetly and I’m back asleep by 8:10am.

Dr Federenko calls by around 9:00am and I resist the temptation to use sign language again. His English is fabulous. Especially when he tells me to “relax, take it easy, all is good, you can sleep”. A truly super man. He helps kick MS into a fair solid remission and thinks it’s perfectly acceptable to go back to sleep even at 9:30am! Now why wasn’t he in my Russian classes (because he already speaks Russian you dummy – Ed).

Spent the morning learning a few more songs on Russian MTV. I have to idea what I am singing, but then neither do many bands. I mean really, what does Bye Bye American Pie mean and what drugs does Bjork imbibe before she writes any new song? Bohemian Rhapsody? Personally I love Queen (special shout out to brother Julian sitting alongside Freddie on Cloud Mercury) but really, what the hell does “Scaramouche Scaramouche Can You Do The Fandango” really mean? Anyway, I like to think I’m singing a romantic Russian love song about unrequited love. Most likely I’m singing “you have a lampshade on your head”. Ah well, at least I’m trying to absorb local culture along with local cuisine (food? what again? move on already, they’re bringing their suitcases full, whatever you say 😄).

Today was PICC line day. Inserted into the neck under lidocaine and a tranquilliser should you want to float high above the room while the doctor carefully delves into a rather important vein, or is it an artery, someone medical fix my waffle please. Now as we know this little trip of mine has so far been defined by my ability to get choking fits at the most inopportune moments. Can’t go for it today though; line into the jugular seems way too precarious to me. I plan my procedure well, I sleep until 11am and am so laid back I am almost falling over (like I don’t do that enough even without impending minor surgery). Okay, into the mini-surgery room, hop up on the couch – also known as ask nice nurse to lift my spastic legs up – while I simultaneously try not to topple backwards onto the nice clean highly disinfected floor. Breathe in, breathe out, you’re fine. Loads of swabbing in neck area, all 22 of my chins and a wee bit of my right ear for good measure. Appreciate that nice clean ear my dear doctor, it took the UK NHS 12 days to syringe it before I came out. They had no free appointments for almost two weeks, so my poor little kiddies had a VERY SHOUTY MUMMY for my last two weeks at home. How odd that my children now get to enjoy peace and quiet without me, when that has been on my Christmas and Birthday list since they shrieked their first ever cry in my house. “I just want some peace and quiet, kids”. Recognise that phase, my not so little noisy buggers?

So I lie stock still on the very narrow bed and the doctor covers my face with that odd blue paper they use in operations. Breathe in, breathe out. A small hole in the gigantic (Plenty?) blue kitchen towel to focus her attention on my neck. Out come the vampire fangs and gnash-gnash and we’re done. Shape up girl, this is a serious procedure. And then it happens. With no warning, she moves the paper away from my face on the opposite side and doles out a sensational spray of antiseptic cleanser. Guess that should have been a Breathe Out on my part, not another outrageously ill timed Breathe In. I’m fairly convinced she wasn’t expecting me to start wheezing and hyperventilating just as she started to sing “The First Cut Is The Deepest”.

Humour my future fellow patients. It will get you through this very odd world we inhabit for 30 odd days over here. Just do not get the MS choking symptom before you arrive. A few photos of said PICC line. Messed about a bit too much trying to get the wobbly PICC tubes to settle down, so had to get the dressing redone this evening. The nurse smiled at me. Or gritted her teeth? Hard to determine facial emoticons in a foreign language…

Basic PICC photo

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Rocking the Johnny Depp pirate look…

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And finally the Seven Dwarfs look. Jury is out on which dwarf: Doc, Grumpy, Happy, Sleepy, Bashful, Sneezy or Dopey? Tonight’s homework dear readers is to choose my HSCT dwarf name. Worrisome that none of them was called Alky.

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And as a finishing heads up, I found the insertion of the PICC line to be a bit uncomfortable, occasional quick twinges on about a level 3 pain wise. But no long lasting pain during the procedure. Unexpected, although the doctor did warn me first, was a very strong push onto the clavicle just as she finished. Don’t fear this bit of the journey. I have had worst dental appointments and my Dentist is a fabulous practitioner. Just breathe in, breathe out, and don’t inhale the antiseptic spray!

Live Long And Prosper

Monday 2nd March. Hard to believe that this is only my 7th day in the hospital. Strangely I almost feel at home already. I had seriously misjudged the modern Russia. In a city like Moscow, things run as smoothly as any other major metropolis. I could be in Basle or Zurich, Berlin or Milan.

So not much excitement to report yet today. Usual 11pm & 3am stimulating jabs last night and then the 10am drip. Incredibly my right hand vein made itself instantly available after a good few slaps, so the mini-pneumatic drill never saw the light of day. But Dr F did subsequently call by to say they will insert the right neck PICC line 6″ into the jugular neck vein tomorrow, before the SoluMeldrol drip. I think we can safely call that a final scoreline of Nurses 1 – 0 Rubbish Veins.

Now while I wait for more drama to materialise, I will post a little précis about the hospital food. First up is the amazing revelation that at 2pm already today, I have not yet choked on anything so far. Hallelujah. HSCT really does work (joke 😉, we all know the mantra of no chemo = no cure, and chemo for me is still a few days away). Anyway the culinary delights appear broadly along these lines:

9:00am Breakfast – porridge, ground wheat meal, semolina or something similar. Big shock for me was it tastes very salty. Three sachets of sugar later and a swirl of maple syrup and all is good in the breakfast world again. Also making up the breakfast tray is some form of omelette or scrambled egg slice. Top with BBQ sauce and instantly make perfectly palatable. Or a hard boiled egg; not much work need on that little gem.

11:30am Snack – usually two boiled apples, a plain yoghurt and a small piece of meat. Now you do have to get to work on this snackette. Personally I attack the meat while turning the apples into a gourmet pudding. The beef that arrives is a tad tough, but any lamb is always less of a chomp-fest. And should the cut of meat be tongue, well either go for the ‘I Ate Tongue’ badge or heave it into the bin. Personal choice allowed. The apples can be gently peeled (the skins are very soft) and then perfectly diced, à la your favourite filthy rich TV chef, and then covered in cinnamon. As the cinnamon takes hold, stir some maple syrup into the yoghurt. Pour over and enjoy. A few enterprising fellow patients have crumbled sweet biscuits onto the apples to emulate an apple crumble. Knock yourselves out you future Masterchefs!

2:30 Lunch – Soup and a more hearty main course of maybe fish or meat with mashed potato or yesterday was a pasta dish. If you still have meat left over from the earlier snackette you can also dice that and add to the soup. A splodge of black pepper (start collecting the sachets from restaurants now) and you have a very tasty soup, that you know was freshly made and contains no additives or MSG or crap ingredients.

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6:00 Tea/Evening Snack – I have not been here much for the evenings, as during tests and mobilisation phases you can readily leave the hospital and head out to eat. But the meal is lighter than lunch and for some inexplicable reason can often contain porridge or creamed wheat again. Go figure.
Tonight was a small pasta meal with a few bits of meat and a mild sauce (mushroom?). Add black pepper and stir!

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Actually that photo may be yesterday’s lunch? It’s all starting to blur (maybe one less bubble needed at happy hour?). And small packs of sweet biscuits find their way to you reasonably frequently and you get enough teabags and sugar sachets to furnish the entire population of a small country.

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This above photo was taken after I persuaded the food delivery lady to remove 22 packs of sugar and 12 packs of tea. She flatly refused to take it all and left me enough for a photographic trip down memory lane for you Moscow veterans!

I am a spectacularly fussy eater, but the food here is fresh, non-genetically modified and easily digestible. Do not think of the small slabs of meat as an oddity; instead think of them as a protein boost, without all the sugar and oats and calories of the ‘nutrition bars’ handed out at your local Health Club. Some patients are bringing entire suitcases of food! Give yourself a break, the supermarkets here are fine and the plethora of carers are visiting them with glee at every given opportunity. The carers are even having team outings to find loads of wigs in the supermarkets. Bizarre, but true. So just bring a couple of packs of instant noodles, condiments and anything unique to your own country that you can’t live without. Vegemite, Maple Syrup, Peanut Butter Pretzels; choose your poison!

Our night finished with an impromptu Happy Hour organised by me via Facebook and my sister via the bakery and bottle shop. New arrivals include Linda and Meegan, plus we still need to say an additional evening farewell to Hanne and Bobbi. A smidgen of champagne and copious amounts of orange juice. The two ISO escapees and the two current chemo girls were naturally on the orange juice, while those of us still in the early stages added a bubble or two.

We pay homage to Leonard Nimoy (Dr Spock) as we all intend to “live long and prosper”.

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Catheters, Smiles, Bolshoi Ballet (yes, really!)

We are now on Sunday 1st March and of course I missed my kids coming into my bedroom at stupid o’clock this morning, so they could semi-assault me with tortuous shrieks of “Mummy, Mummy, pinch punch, first of the month”. Erroneously they seem to think the one who pinches the hardest wins? Or is that child the one I sneak in and pinch on the same night while they are sleeping? Hahaha you two, you will never know! So I was amazed to be missing that 12-times-per-annum bruise fest? Did I already mention that I am SO not a morning person, even without the bruises!

But now to return to yesterday with the start of REAL treatment, no more prissy tests to do. On the dot of 10am (am really liking these late starts) in came Dr Federenko, all sparky smiles and flashing blue eyes. Quick check of blood pressure, heart and a reminder that I must also smile, and I was good to go. One of the nurses hooked up the SoluMedrol steroid 200ml drip and 15 mins later they returned and I was free to leave the hospital until 11pm.

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So now I was sure my treatment was running to schedule, I could fess up to the previously purchased Bolshoi Ballet tickets to see “Giselle” at 7pm that night. I had already cleared the ‘boarding school (aka. hospital) exeat’ with Anastasia last month by email, but then the tickets I’d tried to purchase in England didn’t work out. Luckily the Concierge at the Vega got two fabulous tickets for the same night already arranged with Anastasia. The tickets were in a 2nd Balcony Box, which sounds very flash, but the Bolshoi is truly special and mostly all the Balcony seats are in boxes for 6 people.

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It was a totally magical night, from the smoked salmon open sandwiches before the performance, to the taxi driver picking us up dead on time, under pre-agreed lamp post, at 9:45pm afterwards. Even my non-ballet loving sister stayed awake, so the performance must have been something special.

Mind you she could have just been being especially hyper-vigilant due to my previously unexpected inhalation of a piece of smoked salmon. About 2 mins before the performance started in a scene wildly reminiscent of the Oscar winning MRI dramatics, I decided to up the ante with a full-on choking at the world’s most famous Ballet Theatre. Remember, we are talking ballet here: no loud singing or pounding of marching drums like the Opera Aida. No, it’s tinkling harps and the delicate swish of the ‘en pointe’ ballet slippers and some ridiculous woman in Box 7 projectile coughing smoked salmon surreptitiously into her hospital supplied tissues. No wonder my sister stayed awake (to wildly gesture to all the other box members that she had absolutely no idea who I was and why I keep on following her).

Emptying the box…

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Our own personal chandelier above our box. Re-enacting Sia’s Chandelier swing only occurred to me a mere seventeen times

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Now let’s be serious, if I was to really swing from a Chandelier, it would have to be the one above the main auditorium

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Now I have to say, there is very little about having MS that you can spin in a positive light? I guess I have been forced to become more humble; I mean how proud could I stay when I can hardly walk and have an annoyingly unstable bladder (“Mum! MUM!! STOP!!! Too much information, my teachers are reading this…”). And I have also realised after many years that asking for help is NOT a sign of weakness or pathetic inferiority? Instead it takes incredible strength of character to say, “Please can you lace up my shoes” or “Please may I park in a disabled spot”. And my dear sweet children, who have driven me totally crazy on so many occasions, really are my mini-carers now. Not what I planned for them; being a single-parent I had intended to continue to spoil them rotten (with firm boundaries of course!) for a few more years. But now at just 13yrs and 12yrs they have to make their own meals and do their own laundry and always hold my hand when outside the house. All good life skills and should help with their empathy, but for me it’s meant they have had to start growing up too much and too quickly. It feels like my two “babies” left me on the day I was diagnosed. 😢

So at last, after a full 12 months of trauma the light at the end of the MS tunnel shone down on Moscow. No MS would have meant no Moscow. And no Moscow would have meant I would have staggered to the end of my life having never been to the magnificent, regal, awe-inspiring Bolshoi Theatre.

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I am already planning my return to see the Bolshoi Opera perform La Traviata on 13th June this year. Too soon? Really? Sure it maybe too soon, but aim high HSCT Warrior. Aim very, very high and keep your 50% of the promise made to Dr Federenko.

Back to the hospital by 11pm for first Leukostim shot. Small jab in the upper arm, a bit of a sting and off to bed. Unless of course you are me, the night owl extraordinaire. I rarely go to bed before 1am in my regular life, so being wired from the ballet (or maybe from the near death smoked salmon experience) I was more than able to stay awake for the next Leukostim shot at 3am. Seems straightforward to me. For 4 days we eat, (choke), sleep and repeat. Simples!

A nice slow start again this morning. Dr Federenko, smile, twinkling eyes, blood pressure, et.al. Nurse arrives with the SoluMedrol drip, inserts catheter line, wiggles catheter line, reinserts catheter line, gives up with left hand and calmly starts to slap right hand. See children, slapping IS allowed when appropriate. Slap, SLAP, SLAAAP! Good grief, veins, show yourselves? Eventually nothing for it but rear backwards and stab that baby! Catheter in, drip flowing, calm is restored. But then the fluid transforms from a virtual monsoon torrent to a trickle of singularly non-epic proportions. One nurse comes to check, then two more, even Dr F pops by to encouragingly remind me, “all is just fine”. Am not entirely sure, but I think I saw a delivery to the nurses station earlier of a semi-dainty pneumatic drill with a label saying “использоваться для Минди в венах”. To be used for Mindy in the veins. Hmm.

So this afternoon we had a tea party on the 3rd floor to celebrate Hanne (Norway) and Bobbi (Australia) coming out of ISO. Cakes, sandwiches, chips/crisps, chocolate and anything else designed to keep us happy. Happy Warriors leaving on Tuesday & Wednesday. Just as the doctor ordered. Oh and the party game naturally involved a selection of hats and wigs that we used for a mix-and-match gala. Not much can be said in words. The pictures below tell the story.

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Forward to recovery for Hanne and Bobbi with all your fabulous wigs and hats and yes, you got it… SMILES.

Sleepover Time!

Thursday 26th February and the final tests are finished. This morning was an eye exam and a lung & pulmonary test. Eye test was fine considering I have the worst eyes in the world! The Opthamologist has received special mention from previous patients for her excellent English. Well I blew her away with my excellent knowledge of the intricacies of the eye. We had an illuminating conversation about vitrectomies, lamellar holes, vitreous detachments and intraocular lens replacements. By the time I left we were firm friends and had already agreed I would return here should my left eye give me any more trouble. Interestingly she explained how here in Russia they can fix a lamellar hole; slightly different to the information I was given by Moorfields in London, who shrugged their shoulders and said there was nothing they could do…

Lung test was a quick breathe in slow, breathe out slow test using a tube attached to a measuring meter. Then same again using a sharp inhale and exhale of breath. I appear to have a small lung capacity, which has obviously distressed me, as I was dead set on becoming an Opera Singer after HSCT. 😉🎵😉 And for those of you that know me personally, you will be pleased to know that my miniature lung capacity should have no effect at all on my ability to talk incessantly. Well thank the Lord for that blessed gift!

Once the last of the tests were completed, Dr Federenko gave me a brief ‘heads up’ that all seemed fine and that we would discuss everything in depth in the morning, once he had fully reviewed all the results and my patient history. Then he delivered the jolly super news that I was not needed until the next morning. It’s SLEEPOVER time!

Back to the hotel and direct to the bar. Of course I will give up alcohol as soon as necessary, but just now I am still normal. What? I’ve never been normal? You could have told me that piece of news a little sooner? And in case you think I am far too easy on the alcohol for a hospital patient, I have it on good authority that two previous Norwegian patients, slipped out between rounds of chemo to the bar near the hospital for en liten øl eller syv!

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Whilst quietly seated in the cafe/bar we decided to try to work out the wallet full of coins we’d collected. Fabulous sister emptied her wallet and laid out all the coins.

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So far so good: 5 ruble silver coin, 2 ruble silver coin, 1 ruble silver coin. But what on earth are the copper coins? Half a ruble? Like we used to have a half penny in England? Nice shiny copper coins with an indistinguishable picture on the front. Really? Half a ruble? Let’s take a look at the back of the coin. Holy mackerel, they have a picture of the British Queen on the back of their coin! How very international of them to pay homage to the close relationship between their former Czar Nicholas II and the former British King George V, who of course shared the same Grandmother/Бабушка in Queen Victoria (Виктория). Unbelievable how far behind they have now left the Soviet Era. Embracing the former Royalist Era? Or a giddy aunt getting two English pennies, with brand new odd designs on them, from the depths of her ginormous handbag?

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Dinner on Thursday again involved the hotel restaurant and the caviar tray. You know for £5 (USD 7.75) you get the previously photographed bowl of caviar and three wonderfully fluffy blinis. To me this is a fabulous price for a rarely eaten delicacy. But to all other nationalities here they seem to think I’m very odd wanting to eat sturgeon roe? At last, irrefutable proof that I am related to Queen Victoria and by default half the Russian population. For the duration of my stay here the nomenclature of Tsarina Mindystasia may be used. On return to England, Princess Mindy will be just fine. On return to Australia, you may refer to me in the usual way of “that pompous git over there with the English accent!”.

Whilst having dinner in the hotel restaurant I got to practice my command of the Russian Cyrillic alphabet. The large screen was showing a football (soccer) game. By using my superior foreign language skills, or maybe the mother tongue of Tsarina Mindystasia, I was able to decipher that it was ZEN v PSV. And as my trusty travelling companion, who has an encyclopaedic knowledge of every football team in the world, was able to assess it was a Europa League match between Zenit St Petersburg and PSV Eindhoven. No idea of the final score as they turned it off when the band (oh joy!) arrived to play jazzed up versions of Abba songs. But we wanted St Petersburg to win, because we’re in Russia and related to their ex-Royal Family! Specially for the soccer fans among you, here’s a photo showing the Cyrillic team names.

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And for the musicians reading (special shout out to Ady) a picture of the band who were every bit as dull as the photograph. But at least they didn’t play “Leaving On A Jet Plane” or “I Ain’t Missing You At All”.

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Back to the hospital on Friday morning for a meeting with Dr Federenko at 11am. Or should I say THE MEETING. The one where he decides if you are a suitable candidate for HSCT. Luckily I had already done the pretests in England last year, when I was considering going to Tel Aviv for treatment, so was not expecting to be denied on medical grounds. But Dr F still likes to be sure you will withstand the chemo and transplant and the treatment will be of benefit. He was very encouraging saying I did the right thing by refusing all the drugs that the English neuro tried to prescribe me. Dr F actually seemed pleased that I come to him “clean”. No chance that any of my results from HSCT can be confused with stopping a DMD (disease modifying drug). The main one the Neuro in England was pushing was Mitoxantrone, to which Dr F did a very firm negative shake of his head and proceeded to whip out a laminated poster of the brain and explain why Mitoxantrone is not even remotely the right drug for what is needed to manage MS. Something about macrophages on the wrong side of the blood brain barrier and not having an impact on the (MS fucked-up. Ed) immune process. Bloody UK Neuro’s made me feel such a wimp for not at least trying steroids. My justification now stands tall, once here at the Pirigov, with the Angels of Moscow.

The laminated poster containing the fingers of Dr F. Yep, he trained for all those years to become a photography assistant.

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Later that same day, much amusement was had with the surprise “good luck” present my sister bought me from the local supermarket here. As a joke, and I stress very heavily a JOKE, she found a platinum blond, extremely puffed-up wig. For the Brits amongst you, think Myra Hindley on speed with a double dose of Elnett hairspray. The rest of you just need to know that she was a notorious child sex killer from the 1960’s. And you lot wonder why I favour the classic bald headed look of Sinead! But Sarah, the Aussie in the room opposite me, was rather in awe of the follicle future that could lie ahead for me and enviously popped said wig onto her newly shiny scalp. Her father Graham (he of the Vodka fame) decided it suited her and immediately purloined a photograph.

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With the low cut strappy top that we all wear to accommodate our PICC lines and the shiny blond hair, it was quickly established that Sarah in fact looked remarkably reminiscent of the ‘Ladies of the Night’ that frequent the hotel bars over here. From MS to Courtesan via HSCT. Knock yourself out, Sarah, someone somewhere will have a fetish for a lady of the night that is bald. 😄

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Tests, Tests, Tests And Oscar Awards

Tuesday 24th February dawned bright and sunny. Actually that’s not entirely true, but to write grey and cloudy seems all wrong for the first day of my 28 day countdown to a new immune system. Taking a taxi to the hospital should have been fairly easy, but they sent the wrong size cab and then the usual fare discussion had to take place and then the guards at the hospital gates seemed to have no idea where to send us. Eventually called Anastasia and in just a matter of minutes I was checked into my fairly roomy single!

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With en-suite

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And with a little kitchen too; fridge, kettle, microwave. Essentials for the HSCT girl around Moscow!

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A brief visit to Sarah and Florence; my new HSCT Aussie sisters across the corridor.

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Then a protocol run through with Anastasia and one big “London” book delivered. Shortly joined by Dr Federenko and another “London” book offloaded. Delighted to report that I will now weigh 7kg less travelling home than when I arrived. And that’s even before the chemo starts!

First hospital food arrived just after admission, so of course I took a photograph.

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So much discussion revolves around hospital food and Russia is no different. At least here it is *real food* and not prepackaged frozen meals that are reheated. Sure some of it is a bit too real, but hey this is a foreign country and as any Mum will know, it’s still good to not have to cook it yourself. And for those that have come before me, I now have my “I Tried Tongue” badge! Not entirely to my taste, but definitely tried with style. 😳

This morning really did dawn with blue sky and sun today. Not a cloud was seen for the entire day. My room is on the right-hand side of the main building. Sort of chemo ‘Downton Abbey’ style.

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The tests started early and ran pretty much along these lines:

6:30am urine, 2 wee pots (pun untended)
8:30am bloods, 8 vials
10:30am ultrasound checking liver, kidneys, spleen, etc. followed by gynae checks
12:30am x-ray lungs and sinuses
1:30pm leg vein ultrasound checking for thromboses
5:00pm MRI brain & full spine

And they matched my intravenous line bandage to my jumper!

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Highlights of the testing phase was attempting to wee into two tiny pots at 6:30am, which is a time I consider to be the middle of the night, not a time when the day should be starting. Have no idea why my aim was so dreadful, but the job was eventually done and dusted and no lives were lost in the process. The MRI went on a tad too long for my spastic legs and yes, children everywhere, I can use that word when correctly applied! After around an hour my right leg started to spasm and jerk along to the rhythms of the MRI machine. All that I could think about was the Ed Sheerhan song that starts with “When My Legs Don’t Work Like They Used To Before”. Who knows if I started singing along to the song inside my head, but next I was totally wracked by a major coughing fit. Yep, in an MRI machine. I tried desperately to stifle the cough, which merely led to both my eyes watering like mini Niagara Falls. I have no idea if the Russian radiographers were watching me, but my impression of a consumptive, tearful, myoclonic jerking lunatic, really must have been a sight to behold. “And the Oscar for Most Dramatic MRI in a Foreign Language goes to Mindy Watt, who can’t be with us here tonight, so has sent her UK Neurologist to pick-up her award instead”. Except that he’s not here… crickey, will you just get off the golf course already!

Tomorrow is the final test day; lung and pulmonary function and then a review of all the results with Dr Federenko. Unless of course the MRI has to be repeated in which case I will insist on a general anesthesic this time. At least no need to set the alarm for 6:30am. I mean what sort of a holiday is this…