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.