Supermassive black hole

It's MRI time on Friday.

Or at least I hope it is, last time I wrote about an upcoming appointment it got cancelled, so I may do better to be quieter.

Anyway, it's due at least.

As medical investigations go, I don't mind an MRI. It's not painful and if I'm lucky I'll get to listen to my choice of songs.

I have an MRI CD which, thanks to repeated forays into the tube, has enabled me to choose a song list of tunes that can compete with the metallic bangs and crunches.

Some even complement it. Or so I like to think while I'm lying there, supine and VERY VERY, still.

(Just thought, will I have to wear a mask this time? That'll be a new one to accommodate under the face cage. Better check my letter.)

Sometimes I'm quite optimistic going into an MRI. This time I am not. I have clearly deteriorated over the past two years and I feel quite knocked by a suspected sensory relapse from a couple of weeks ago.

So I'm:

1/ anticipating new lesions

2/ wondering what this will mean for my next round of Cladribine (which I currently can't take anyway as my lymphocytes are rudely refusing to elevate); and 

3/ contemplating the horror of the scan showing black hole(s), which in MS signify irreversible damage.

Although I like to try and be chirpy about these things, I also need to be realistic.

To be honest, I think the best I can hope for from the experience this time round is a bit of a lie down.

:: Supermassive black hole by Muse

(Song for my) sugar spun sister

Yummy, it's Pancake Day.

Or, as I like to think of it, Edible MRI Day.

:: (Song for my) sugar spun sister by The Stone Roses

Bad romance

Me: *humming to self, waiting for kettle to boil*

Letterbox clatters. Huge padded envelope appears on doormat.

Me: Oooooh, early Valentine. *trots out of kitchen excitedly to collect*

Doorbell rings.

Me: *opening door* Hello? *no one there* HELLO?

MS: *Leaping suddenly out of bush and running through door brandishing gigantic red plastic gun*

Me: Oh good grief. *sighs* Hello.

MS: *Pulling Charlie's Angels stance * Hiiiiiiiya.

Me: Hi. And to what do I owe the pleasure this time?

MS: Do I need a reason to swing by and see my favourite little damaged poppet?

Me: Well, no, not usually. To be honest you do just drop in without warning - quite often just when I'm in the middle of trying to piece everything back together from your last visit.

MS:  Aaaah, I like to leave a long lingering memory of myself. A bit like an exotic perfume, the taste of high quality dark chocolate, your favourite flowers...

Me: *under breath* A poop that just won't flush...

MS: *suspiciously* What was that?

Me: Oh, nothing, nothing. Erm, what's that?

MS: Oh! This is my new toy! It's a love gun!

Me: It's a what now?

MS: A love gun! A gun of love! You know, bringing kindness and happiness and joy just in time for Valentine's Day.

Me: Mmmm. Yes. I think you may have got the wrong end of the stick a bit there.

MS: What?

Me: Well, love gun, it's not exactly a gun, it's more of a....

MS: Yeeeeeeeeees?

Me: More of a different thing. Anyway, why are you here with any kind of shooty thing?

MS: Ah yes! Back on to me. I am here to present you with this! *picks up and holds out card* Well, go on, open it.

Me: Have you brought me a Valentine's card?

MS: Ooooh, so exciting! Open it and see! Open it! Open it!

Me: Yes, alright, give me a minute. My hands don't work as well as they used to thanks to your last visit.

MS: OPEN IIIIIITTTTTTTTTTT!!!!

Me: *sighs* Right, opening. It's a..........oh.

MS: I know right? Amazing?

Me: It's not a Valentine's card, it's a letter from my neurologist with my MRI results

MS: I know, I know! Exciting isn't it? It very poetically points out everything that's wrong with you after your last relapse! See all that detail of your defectiveness? See how your current meds aren't holding me at bay? See all that rapidly evolving severe stuff? Spectacular isn't it?

Me: Ah...

MS: Yes! Yes! And look at that bit - the bit that says you'll have to choose a new medication. I know how you simply love doing that, so what could be more suitable for Valentine's Day?

Me: Well...

MS: And that's not all. De de de de derrrrrrrrr *waves gun above head*

Me: I can resort to violence?

MS: NO!! Why would you want to be so mean to me?

Me: Reasons.

MS: No, I've bought you this so you can play a nice little game I like to call Treatment Roulette.

Me: Ah.

MS: Yes! This gun is fully loaded with your options. This one has a risk of cancer, this one can damage your eyesight and this one runs the risk of a fatal brain infection! And guess what, guess what - this really is the best bit - it might be that NONE of them EVEN WORK! Go on. Spin the barrel, pull the trigger.

Me: Hang on, don't I get a bit of time to think about this?

MS: Time? TIME? Do you really think you've got a lot of that left?

Me: Well, er...

MS: Well, of course, take your time if you want, but I'd advise you not to take too long. Never know when I might drop in again. *Pauses* Well, best be off, places to be, mischief to cause.

Me: Okay. Bye then.

MS: *waltzing out door* Byeeeeeeee. See you next time.

Me: *slamming door shut* Oh flush off.

:: Bad romance by Lady Gaga

Wishing well

Bit weird to think of an MRI as a wishing well isn't it?

A clangy-bangy tube of claustrophobia, I understand - although my hospital has started putting small mirrors in the machine to help you see out - and sometimes, unnervingly, your own face. 

But wishing well? Perhaps not the first thing springs to mind.

Nevertheless, it's the comparison that keeps popping into my head as my next (and umpteenth) appointment with the machine is this afternoon.

Only instead of loose change, it'll be me delivered into the magnetised well to make my own wishes for oooh, a good hour or so.

And I will be wishing. Wishing that:

• that whatever is found impacts as little as possible on my family
• that the new lesions that I'm sure I have will help determine what drugs are next (while being immensely grateful those drugs are available to me)
• that all the research is getting us closer to a cure
• that everyone affected by this stupid disease has access to the support they need to live their lives as well as possible

Outside of the MRI we can put on a brave face and a happy smile. We can keep calm and carry on because there really is no other option.

But inside it, there's just us and some motionless time to think about why we've been put into that tube in the first place.

To consider how our lives might have been different if only we'd not woken one day to find we couldn't see out of one eye, or couldn't feel our feet or couldn't find the words we used to know.

How we've sacrificed some of the things we might have wanted, how we've reset and redrawn our parameters and how we may have lost friends, family, workplaces or opportunities.

I'm pretty sure MRIs have seen their fair share of confessions, of negotiations, of whispered prayers and of silent tears.

And I'm equally sure that they have seen quiet resolve, internal pep talks, gallows humour and stiff upper lips.

I know I have wished for just a bit more time, for just a few less symptoms, for the chance to make the best of what I have.

I've also asked for help to keep finding the strength to cope. 

I can't always see it but I know that strength is in there somewhere. And I really should learn to realise that I can be proud of that.
Maybe the enclosed tube with its teeny, tiny mirror is the best time to reflect on that.

So wish me well. This afternoon, I will be my listening to some very loud magnets while hoping to also hear the sound of my own pennies dropping.

:: Wishing well by Terence Trent D'Arby

Fix me now

We combined my work trip to London last week with a short family break.

This was ideal as it gave me time to rest and recuperate in a hotel after my meetings while also offering hubby and 10-year-old the chance to explore.

Our daughter loves trips to the capital, she is particularly keen on the underground and the excitement of being somewhere so busy and diverse.

In fact she even declared over dinner on the first night that what she likes the most about London is "all the cultures and languages."

Wise words I think, especially as we're living in a time of such division.

I didn't have to work the day we arrived so we took ourselves off to the Science Museum, it wasn't a place we'd been to before and after spending four-and-a-half fascinated hours there, I really couldn't understand why.

It's an astonishing place and this summer there is a spectacular space-themed exhibition. Should you ever want to know what astronauts eat, what they do to train and where they poop (gigantic space nappies apparently) then this is the place for you.

But just along from the space extravaganza were two other fascinating displays - one looking at the advancement of technology from the 1700s onwards and the other looking at the body, brain and self.

As it happened, I found MS in both of these exhibits. From one of the first MRI machines, a very small and clunky-looking contraption dating from 1983, to the advancements in ways science has started to rebuild and repair nerves.

And from the Science Museum to the science of MS, finding treatments to repair myelin is becoming the holy grail of multiple sclerosis research.

Its importance is explained by Professor Anna Williams in the MS Society's summer edition of research matters:

"Without myelin, the fragile nerve fibres are left exposed and unable to send signals clearly. Our brains have the incredible ability to repair myelin. but with age and repeated attacks, this stops working so well. And as MS progresses, disability accumulates because nerves are permanently lost.

"Research has shown that people who have higher levels of myelin repair see a reduction in the progression of their MS. So if we can repair myelin, we should be able to reduce the number of nerves that people lose, and slow or even stop disability progression."

At present, myelin repair has not been tested on humans but clinical trials are in the process of being designed, organised and funded.

The hope is that myelin repair treatments will become a reality for people with MS over the coming years.

Wouldn't that be great? Wouldn't it be lovely to see a display in the Science Museum in the not too distant future explaining how we discovered ways to repair our damage?

Aberdeen Magnetic Resonance Imager from 1983. Science Museum.

:: Fix me now by Garbage

Two out of three ain't bad

Results of my MRI and recent Tec blood tests are in.

1) My lymphocytes have dropped but are currently remaining above the danger zone.
2) Some areas of damage appear to be fading.
3) There is a new, tiny, lesion in my brain.

And while I don't want the 'new', I am choosing to concentrate on the 'tiny.'

I'm not fully sure if this is laudable positive thinking or foolish denial, but whatever it is, it's getting me through the day.

:: Two out of three ain't bad by Meatloaf

Pounding

My latest MRI is done and dusted and now I'm just waiting for my neurologist to interpret the results.

It was a slightly shorter scan than I'd anticipated at around 30 minutes and I only had chance to get through a few of the tunes on the CD I'd chosen to have pumped through the (not massively effective) noise reducing headphones.

This was the first time that I'd realised that the hospital staff were also being subjected to my musical taste - I had previously assumed that they were able to just send it directly to me without having to suffer/enjoy it in their control room.

The thought of having to listen to other peoples' music choices while working - like being in an office with a radio stuck on a station you hate - made me shudder slightly.
But not too much: no moving allowed in the tube.

It's not easy to find suitable music for the scanner. Once, with an MRI on Christmas Eve, I was saved from having to make my own decision by having festive music selected for me as I slid my way in.

The staff explained they were desperately trying to help everyone enter into the festive spirit, hence the seasonal songs and the tinsel around the tiny tube. But I have never been able to listen to When Santa got stuck up the chimney in the same way again.

Sunday's scan indicated that while I had hit the jackpot with some of songs on my chosen CD, the opening bars of Wide Open Space by Mansun were a little ironic given that I was trapped motionless in tiny tube under a face cage.

But what was undoubtedly successful was this week's tune. It somehow fit the swooshing and clanging of the magnets without jarring uncomfortably.

With a carpe diem chorus, it is relentlessly and joyously anthemic - and that's what you need when you're stuck in a cylinder with just your chronic disease for company.

I'm pretty sure this particular listening scenario is not what the band had in mind when they were composing, but I'm delighted they wrote it anyway.

:: Pounding by Doves

Magnetized

Pic i: Me. Or, quite feasibly, an Ood                                 Pic ii: My damage from a previous scan
                                                                                                          (It's the patchy white areas)

Bit weird to think of an MRI as a wishing well isn't it?

A Smartie tube of claustrophobia, I understand. The clangy-bangy doughnut of doom, I get. The face-caged, emergency-buttoned, wee-inducing cell of solitude, yes.

But wishing well? Perhaps not the first thing springs to mind.

Neverthless, it's the comparison that keeps popping into my head as my next (and umpteenth) appointment with the not-quite-dream machine draws closer.

Only instead of loose change, it'll be me delivered into the darkness to make my own wishes for oooh, a good hour and a half.

And I will be wishing. Wishing that :

• that there are no new lesions found
• that Tecfidera is doing what it should
• that whatever is found impacts as little as possible on my family
• that all the research is getting us closer to a cure
• that everyone affected by this stupid disease has access to the support they need to live their lives as well as possible

Outside of the MRI we can put on a brave face and a happy smile. We can keep calm and carry on because there really is no other option.

But inside it, there's just us and some motionless time to think about why we've been put into that tube in the first place.

To consider how our lives might have been different if only we'd not woken one day to find we couldn't see out of one eye, or couldn't feel our feet or couldn't find the words we used to know.

How we've sacrificed some of the things we might have wanted, how we've reset and redrawn our parameters and how we may have lost friends, family, workplaces or opportunities.

I'm pretty sure MRIs have seen their fair share of confessions, of negotiations, of whispered prayers and of silent tears.

And I'm equally sure that they have seen quiet resolve, internal pep talks, gallows humour and stiff upper lips.

I know I have wished for just a bit more time, for just a few less symptoms, for the chance to make the best of what I have.

I've also asked for help to keep finding the strength to cope. 

I can't always see it but I know that strength is in there somewhere. And I really should learn to realise that I can be proud of that.

So wish me well. On Sunday, I will be my listening to some very loud magnets while hoping to hear the sound of my own pennies dropping.

;; Magnetized by Garbage

Comforting sounds

In what I am trying very hard not to make a festive tradition, I spent Saturday in an MRI scanner.

Close to the Big Day as it may be, the 17^th of December was actually pretty good - three years ago I spent an hour-and-a-half on Christmas Eve in one. And while, in comparison to many other medical tests, I quite like an MRI, most people would agree that there are limits to what they will do to get out of the festive shopping.

But the hospital had tried their best – tinsel around the weighing scales and height chart for the pre-scan measurements – and while I turned up prepared with my own CD, I couldn’t resist the option of having the hospital’s choice of festive music piped into the protective headphones.*

First song on was East 17 Stay Another Day which for some reason made me chuckle a lot, until I remembered that the first rule of MRIs is NOT TO MOVE unless you want a stern, disembodied warning voice cutting through the plaintive warblings of Walthamstow’s finest.

It was only a short one this time - just 25 minutes on the gurney with a cage over my face so I didn’t have too long to stay still. Or ponder on the confusing and mildly inappropriate nature of ‘I saw mommy kissing Santa Claus.’

The aim was to get an up-to-date scan of my brain to see what damage is already there before I begin my Tecfidera (which, incidentally, I still don’t have as my MS nurse is still not well.)

The results will form a baseline reference guide to check whether the new drug is working by highlighting any patches of new activity which shouldn’t be there if the drug is doing its stuff. Obviously if I get a relapse which has clear physical impact, I will know about it, but this will also help track and gauge those sneaky instance of damage that indicate silent deterioration.

I’m fascinated by how the varying grey and white patches are interpreted on these scans. I’m also endlessly amazed by how magnets make pictures which make medical meanings.

I do ask my neuro to go through my scans to explain it all and I try to nod knowledgeably while he patiently does so, but as with a lot of things I can understand it for a while before it wafts off into the medisphere and I have to ask him to go through the whole thing again the next time I see him.

I suspect I am not alone in this so I don’t feel too bad. And I can always blame the big white and grey mush he sees on the screen before him.

The only thing I find mildly disappointing about the scan pictures is that my head is not actually sectioned liked the Numskulls with expanded areas for gin drinking, obscure song lyric retention and knowledge of useless trivia.

If I had an MRI scanner that’s what I’d programme it to do. And that would be worth 90 lying still minutes of anyone’s time.

:: Comforting sounds by Mew

*These, by the way, do not block out the repetitive clanking and banging of the magnets, they just dull it a bit. I do know people who drift off to sleep in the scanner – possibly understandable it’s warm, you have to stay still – but I’ve never managed it myself. Perhaps a skill to develop over the next few years as there will inevitably be more close encounters with the tube.

I am woman

Four days.

Four days is all it’s taken to go from gp referral to diagnosis to hospital treatment.

Lord knows the NHS has its critics who spell out the many reasons why it’s not perfect, but to me it is a beacon of brilliance.

I was fast tracked. My gp had examined me and looked quite worried - never an emotion you want to see cross a gp’s face – so referred me immediately. I had an appointment yesterday at the one-stop breast care clinic at our local hospital.

To say that the care was professional, reassuring and compassionate is a massive, massive understatement.

I had a mammogram (not as uncomfortable as I feared), ultrasound (sticky) and treatment with a consultant (reassuring) all within two hours.

~ I also was given a bonus lesson in how to tie my hospital robe up properly. Useful as I have an MRI pending and I will not have to do my usual flail around in the changing room and hobble to the tube while grabbing onto the ties and trying very hard not to flash other unsuspecting patients. ~

And it turned out that it was a huge cyst. A great whacking sack of breast fluid created thanks to a) my age and b) my hormones.

It was drained – no anaesthetic needed – within minutes. Yes, it might come back and I’ll need to keep being aware but I was done and okay. And I have never been more grateful.

I’d attended the appointment with my long-suffering hubby who has supported me through my many and varied MS issues. He is utterly brilliant.

But I was also struck by the emotion I felt towards the other women sitting in that waiting room. Women hunched holding hands with partners or compulsively clutching their gowns or staring blankly at the ‘breast check’ posters. All with the big, dark eyes and pale, pinched faces of worry.

Faces that had spent days panicking. Or covering up panic because they can’t worry their partners, or their children, their family or their friends. Or panicking only now because they can’t quite believe they would ever have to be here and now they are and its hit them.

And then there were the women who had no one with them, who had made that frightening journey on their own and who might later be making tear-stained phone calls, walking out alone along the sterile corridors.

As I sat waiting for my results it seemed the only, only thing to do was to hope that all of us got out of there with good news – that this unspoken waiting room solidarity could somehow guard us all.

I have no idea what happened to the other women. I don’t know if my silent hope worked. But for one day our lives touched and I felt an overwhelming surge of protection towards my team; my frightened, waiting women.

:: I am woman by Helen Reddy