Looting and growing pains

HSCT diary Thursday January 5th 2017

It’s Day -9. Started here in Puebla on day -11. Maybe I’ll get round to publishing those two days soon, but was sick as a dog on both, thanks to the cyclophosphamide chemo for 5 hours on each day, so the blog may not make much sense before it’s edited. It currently resides in my old-fashioned paper diary, which accompanies me everywhere.

Today there was no chemo. A bonus. Though there was a needle full of filigrastim at 7.30am today, from the kindly nurse Alessandra, to stimulate my stem cells to grow. By 10am I was having growing pains that I hadn’t felt since 1978, when I was 11 years old.

First my leg began to ache. Then my clavicle. And now my back and shoulders. And my glands have swollen up, as they always do if I am remotely out of sorts or ill.

And to top it all, some Pueblans are looting the shops and protesting over a 17% hike in oil prices over the new year. Very inconsiderate of them, as it may mean we can’t wander out to the shops if needs be, or even go on a possible sightseeing tour of Puebla while we recover from the initial two rounds of chemo.

Tomorrow is the Day of the Kings, an extra Mexican Christmas for families and children. Out on the streets, men and women sell bright balloons meant for the children to let go with their wishes for the year.

The shops are full of special bread made with figs and chocolate and something green – not quite sure what, and google translate wasn’t sure either. Somewhere baked inside the circular donut-shaped loaf is the plastic figure of a small boy, like the sixpence in the Christmas pudding. Whoever gets the figure will receive an extra gift.

Today was the first time since chemo on Tuesday and Wednesday that I haven’t felt like heaving my guts out. Which is good. Though the filigrastim shots or perhaps the anti nausea medicine are definitely making me feel weird.

But then again, I’ve felt weird for a long time, and some of the MS weirdness has taken to the back burner since the chemo began. My fingertips don’t hurt today, nor are they numb, and nor do my toes. And my legs feel a little looser than usual, without the tightness around the IT band in my thighs (can never remember what it actually stands for). And the pins and needles and the sensation that ants are crawling through my body bearing little jolts of electricity rather than crumbs of bread has almost gone.

Though my eyes are still burning a little from the optic neuritis, and the tinnitus that has accompanied me like a faithful but unwanted companion since June 2016 is still there, humming away like an old unwatched TV at 3am when everyone else has gone to sleep.

Not sure yet about what’s happening to the brain fog, as I haven’t had to use my brain much since arriving here. It usually freezes up and then clouds with fog when trying to do too much at once – simple things, the ones I used to take for granted, more fool me, such as walk and talk, or drink and think, or even listen to music. Am trying to learn a bit of Spanish, but compared with normal life in London, this is a brain-breeze.

I am looked after by Joy, a lovely carer, who not only takes my temperature, doles out the medicine (and some sharp nursely advice to the junior doctor who makes me go ‘ouch’  when his injection technique is less than gentle) but also does the cooking. Though this evening I took charge to show her that great British recipe, baked potatoes with cheese and crumbled bacon. She was polite enough to say she liked it. And there’s even a cleaner who comes in every day to clean the kitchen, the bathrooms and the floors. She (I don’t yet know her name)  gave me a surprise when I arrived back after chemo on Tuesday to find a tiger roaring from my bed. Or at least the image of a tiger on a bedspread. Have decided that this big cat is here to protect me and accompany me on this rather odd journey far from home in a town called town beneath the volcano Popocatapetl.

This evening we celebrated the 30th birthday of another patient here, a lovely woman from Kenya – one of the youngest patients here. The average age is 47. She and her mother brought cake and a festive spirit to the rooftop terrace of their apartment building, and invited our group (1) and several from other groups who are in the same apartment complex, Inspiralta, for some jolliness at 6pm. It was a lovely but brief interlude. We had to be back at the apartment by 7pm to be good patients again.

It was only when I got back to the flat at 7pm, in time for yet another injection of filigrastim and more pills, that I began to wonder why we kept hearing police sirens. Turns out there is a petrol crisis in Puebla state and elsewhere in Mexico, as prices have gone up here by almost 17% and there’s been some panic buying and even looting of shops. Why does news follow me around? All I wanted was to come somewhere peaceful to be sick and get healed. Or healed as much as is possible.

I am no longer in journalist mode. I am now a patient, and much more concerned about the rather evil smell emanating from my bathroom, where the plumbing is less than seemly or obedient. Arrived home yesterday to a flood in the bathroom caused by a leaking tap, and while the plumber claims to have fixed both that and the recalcitrant loo, the bathroom still smells of bad drains. And the fact that there was a plunger by the lavatory when I arrived at the flat would suggest that this is not the first time that it has backed up or failed to flush properly. Ah well, the medical facilities work very well here, and so do the loos there, and the doctors and nurses have been outstanding so far, so that’s the main thing.

Such are the concerns in life while having stem cell transplant treatment. Bugger the price of petrol. My loo needs to be in pristine working order when I am neutropenic, as I really don’t fancy trying to tackle a backed-up lavatory while I have no functioning immune system.

I am also suitably grateful to be here in January, while the weather is blissful – 24 or 25 degrees C during the day, but cool at night and in the morning. Am now so glad that they had a cancellation this month at the last minute, as July – my initial date – would be far too hot for me.

I can see on the white wall beside my bed the tiny bloodied corpses of the dead mosquitoes killed by an earlier resident. In one case, he or maybe she kindly also left the imprint of his trainer on the wall as well. Though I imagine it’s a he, given the size of the trainer. I suspect there would be rather more mosquitos in the summer months than now. Have only noticed one mozzie so far, outside the hospital where we had an ECG and neurology appointment the other day.

It’s almost 10pm here now, and the looting and blogging can wait until tomorrow. I am taking my aching, 49 and a half year old bones-with-growing-pains to bed. It’s time to sleep. And perhaps to dream of a life in which MS is banished or at least halted. 50% chance of it being halted, 25% chance of some symptoms reversing. And the 0.8% mortality rate for stem cell transplants for MS applies in general but hopefully not here, as Clinica Ruiz made sure to tell us on the very first day that in almost 300 international MS patients transplanted with HSCT, they have not (yet) lost a single one.

Maybe I shouldn’t make that my last words for today. Let’s make them to sleep and to hope.



Caroline’s stem cell odyssey

This is a new beginning. After 24 years of living with MS, and one year after diagnosis, I have been accepted at the Clinica Ruiz in Mexico for a stem cell transplant early in the new year. The treatment itself isn’t new, though it is still relatively new for MS. Stem cell transplants, or aHSCT, have been carried out for MS since 1996, and the technique has been refined over the years, and is done at several centres across the world. Dr Basil Sharrack and John Snowden at the Sheffield Hallamshire hospital have been carrying out the UK arm of aHSCT trials that were started by Dr Richard Burt in Chicago, with some remarkable stories of recovery by MS patients after the treatment. I spent several months being tested to see if I was suitable for a stem cell transplant in the UK with the NHS, but was told in November that I don’t meet enough of the criteria currently being applied here. I was disappointed, but after talking to several other people with MS who had undergone aHSCT in Sheffield, London, Mexico and Moscow, decided that it was worth a try, and applied to Clinica Ruiz, where many other British patients are heading. Stem cell transplants are the most exciting development for MS in decades, and I am very much hoping that the transplant will work for me. The risks are high, but so are the risks of not doing it. As an optimist, I look at the 70 – 77% success rate for those who have it, and just hope and pray that I am not one of the 20 – 30% for whom it makes little difference. And I prefer not to think at all about what happens if I am one of the 0.8% who die as a result, usually of undiagnosed heart conditions or other kinds of organ failure. So have spent the last few weeks after being unexpectedly offered a cancellation in Mexico dashing around to prepare and ensure that I am ready in time, with new MRI scans, perfect new fillings for my teeth and all the help and advice from family and friends that one could wish for. I think I am almost ready now for the start of this odyssey into the unknown.