A delicate situation but not a state of war

HSCT diary day -7

 

The wind is howling around the fifth floor of the apartment at Inspiralta, mingling with the shrill wail of the police sirens, and the sun streams in from the south. The volcano is quiet. This morning, our apartment administrator Paco sent us a wonderfully understated email suggesting that the 20 or so stem cell transplant patients at Clinica Ruiz this month stay at home today as the situation in Puebla is ‘delicate but not a state of war’.

 

I had to laugh. States of war are exactly the sort of thing I am not remotely interested in at the moment. I came to Mexico for my health, not to find somewhere that may even be contemplating sliding towards any kind of state of war.

 

Not that Puebla is. Delicate is a good word for the situation right now. There has apparently been a little light looting of perhaps 10 or even 12 supermarkets over the past few days in the north of the city (probably didn’t feel that light if you were the shop-owner), and an awful lot of public discontent about the overnight rise in petrol prices by nearly 20%, as the Mexican government prepares to stop subsidising fuel and let the market dictate the petrol price from March onwards. It is not proving popular in a country where nearly half the population lives in poverty.

 

But all of that seems far away, even though it’s happening in the same city, and the same country, perhaps even a few miles up the road. Ill-health is a no-man’s land, where the growing pains in my bones (my new stem cells?) are of far more immediate interest than anything that is happening in the news or even outside my door.

 

Any ill-health takes you to a country of private introspection and – often – isolation, a kingdom of dysfunction that is yours and yours alone, where the only things that matter are inside. Everything you once took for granted – walking, talking, doing both at once – eating, drinking, speaking – can no longer be taken as read. They become an effort. Knowing where the nearest loo is becomes a necessity.

 

You rarely even realise at what stage you passed across the border to this kingdom, or noticed the border guards waving you politely through. Until suddenly, one day you realise it may be too late to turn back to the country of the well.

 

And – as you start to panic slightly – you realise that even if you did have a map back to the kingdom of the healthy, you can’t see the path any more in the twilight.

 

You trod it day by day, cigarette by cigarette, drink by drink, late night by late night, using all your energy for work or family or play. Yet without really noticing, your eyes grew dimmer by the day, as the nerves were nibbled away, and your legs grew heavier each hour as you walked onwards, oblivious, up that path.

 

Yet for so long, that growing weariness just seemed part of normal life. Perhaps it was age? Perhaps it was normal. Maybe everyone feels like this? You coped, you compensated. You stopped going out so much, but you still wanted to be part of your family, your workplace, your friends’ lives.

 

In other words you lived, and enjoyed. And paid little heed to the place you were walking to day by day, without noticing the cost of entry to this new and hostile land, the kingdom of the sick. A war-zone, where the real enemy is inside. It’s in you, inside your body, and now you have to find a way out.

 

Maybe HSCT is the way back. Perhaps the chemotherapy and the new stem cells that are so painfully making themselves felt inside my bones will instinctively know the way back. Perhaps the map is inside me all along; the route back to better health, or at least a halt to the ever quickening march towards disability.

 

I don’t know, but I and all the others here certainly hope so. And all we can do is focus on getting through each day. How do my fingers feel – are they numb again today as they touch the keyboard? Yes, they’re numb again, yet they weren’t on the days I had chemo. Why? Are my toes numb again? Only a little, and my feet feel better than usual. But then I’m not trying to walk to work and back, just to prove to my body that I can still do 10,000 steps a day, however long it takes. Why is my head aching? And the sharp pain down my back, perhaps sciatica, buzzing and tingling again?

 

I am registered with several MS sites, and another one pings in with helpful suggestions about drugs that may do little but will certainly cost lots. But at the moment, I have no interest in finding out what drugs might help with walking, nor in reading about just how ghastly living with MS is (and what products might help). I know. I’d just like my own body, with the help of Clinica Ruiz, chemotherapy and my own stem cells, which I hope are brewing nicely, to sort itself out into something more like normality, and for my immune system to stop eating away at my nerves.

 

It’s time to go to the rooftop to look at the sunset, and enjoy the sight of the volcano Popocatapetl as it re-emerges from behind the daylight haze. And maybe listen to a symphony of sirens as we sit and chat.

The best thing here is not just the treatment but the people – the other patients, many of whom are blogging their own journeys. All of whom offer a moral support and a camaraderie that I shall miss when we leave. They, we, are all in this no man’s land, waiting to see if the smog clears and the path back to health becomes visible and viable for us once more.

And perhaps then – one day, after HSCT – we can stop living beneath the volcano in this no man’s land, and travel away from the unpredictable eruptions of MS that are sometimes small, and sometimes deadly, in this kingdom of the sick. I hope the path is becoming clearer now as the fog perhaps begins to lift.

18 thoughts on “A delicate situation but not a state of war

  1. Beautifully written musings on the ill-health No Man’s Land, Caroline! Oh the irony of unrest happening whilst you are there for a completely different reason……best wishes from ‘home’.

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  2. You are an amazing writer. I really enjoyed your blog. You bring tears to my eyes and how accurate to describe our sensations of the monster that lives within us. I’ll be heading to Monterrey in April. I wish you the best of health and healing, and looking forward to more of your blogs.

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    1. Thank you – and I wish you the same! It was much scarier before I came here, and since the start it’s been wonderful. Even the chemo nausea is made bearable by the hope that this may finally stop MS progression. That alone would be worth every day and every penny. The scariest thing for me was deciding to do this, and now we’re all here, it feels a lot, lot easier.

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  3. Great write up, intertwining your personal physical tumult with the larger political upheaval so evocatively. I’m a about to fly to Puebla myself… Youu’ve evoked the enormous betrayal of the body now taken over by this unpredictable monster who rides roughshod over what was once yours… your control, volition, ambition and fate. Till you wrest it back with whatever means possible, and HSCT seems to offer the best chance we have right? Onwards and upwards! Courage, dear heart…

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  4. Beautifully written…but we would expect nothing less from you. What a scary journey you are on, but travelling with such courage and grace. If anyone can beat this beast, it must be you. Sending you love and a bottomless bucket of good luck! Love Jennie

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  5. Hey Caroline,
    You’re there! Yaaaa hoo! Ariba, ariba! Go for it going nuclear. We’re all behind you and I’ll really look forward to your updates.
    Take good care of yourself out there. Thinking of you with much love,
    Anna xx

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  6. Wonderful writing, Caroline. Wishing you even more courage and strength than normal, and I know your normal is rather a lot. Looking forward to reading future instalments as you nudge closer to claiming back your body. Enjoy those views!

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  7. What an amazing and inspiring record of what you are facing – I too have MS and I too have the same attitude towards it, I think it’s the best approach personally, get your body to do the fighting with a little help along the way 😉

    Your description of having MS is perfectly written for people without MS to understand it better, it’s brilliant and I shall be sharing your blog with my nearest and dearest as you have put it better than I ever could 🙂

    Thank you for taking the time to report your personal story, and good luck with the treatment, please keep us updated on progress as I too hope to join you on this HSCT journey at some point in the not to distant future! x

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    1. Dear Cassie – thank you! Stay strong. It’s such a bugger of a disease, isn’t it. Half the time people tell me how very well I look, usually when I feel worse than ever. So it’s great to have an opportunity to explain what it’s like. I’ll keep my fingers crossed for you and HSCT. I tried for Sheffield, but didn’t qualify, and am now very glad that I came to Mexico – think the medical protocol is the best for the patient here, as they use Rituximab and not ATG, which means there are generally fewer immediate side effects (ATG often seems to prompt diarrhoea, hallucinations, serious water retention and can makes EBV return with a vengeance). And you live in a flat not a hospital. The only really difficult bit is the money. It’s expensive, and am still fundraising. But decided that it was worth every single penny if it means that I can get my life back again! All the best with your plans too. Cx

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      1. Thanks for your reply 🙂 have you tried crowdfunding / justgiving etc? Sure someone who has risked their lives so many times bringing us the news we all crave would get a fantastic response. You deserve it anyway, not many people would put themselves in the situations you have, you may not feel comfortable ‘using’ your fame but I can’t see anything wrong with it, it’s not like you’re famous for being famous 😀 x

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  8. A beautifully written piece Caroline. I too, pressed the nuclear button a year ago. Best of luck with your treatment. And hopefully a path out of the kingdom of the sick will emerge soon.

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  9. Awesome undaunted born reporter spirit shining through! Those deviant recalcitrant cells are LOSERS!! La lucha continua, la victoria es cierta!
    Ándale! amiga querida xxx

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