Sep 16 2015
16 Comments
Symptoms and Treatment

Ding Dong – Campath, Round Three …

campathMy third course of Campath (Alemtuzumab) is over and I am now back home from hospital. Yay!

The last three days have been a humbling, bonkers, strange experience. Third time around, you kind of know what to expect. And yet, I didn’t. Not really.

When I checked in on Monday morning, I felt like an Experienced Patient as I was shown to my bed. I unpacked my two pillows (essential), my blankie (a must-have), a selection of healthy snacks (mostly left uneaten once the steroids kicked in), a pile of paperbacks (overly ambitious), two towels, an array of miniature toiletries and a pen and notepad. Sorted.

The first surprise was being sent for an MRI before the first infusion. Ah. Right. Didn’t see that one coming. No time to go through my deep-breathing-yogic-anti-claustrophobia exercises, so I happily accepted half a Diazepam.

I therefore floated down in the lift, through the MRI waiting room and gently bobbed towards the hard plastic tray, humming to myself. Then afterwards, floated back up again, ready to be hooked up for the first lot of steroids and then, after being flushed through (really), the Campath.

So far, so good. Then, the same thing happened as before; that all-consuming, incredibly painful, every nerve ending on fire sensation, when the Campath first hits your system. I crawled into a ball and held my hand out for anti-nausea tablets and painkillers, whimpering ‘this too shall pass‘ to myself.

It passed. I ate a lot, read not a lot and dozed on and off. Luckily I had a steady stream of visitors who kept my chin up and brought me even more carb-laden snacks to feast upon. At the end of the first day, I was flushed out once more with saline and unhooked. It was 7.30 pm. Gah.

The second day was pretty much the same, although without the painful Campath-Hit thank goodness, but then the steroids did their job and kicked in. So I spent the second night wandering the corridors, eating toast with a nurse at 4am and offering to help clean some tables. I had a crazy amount of energy and had already packed and unpacked my bag twice.

This morning, after two hours sleep, I went bleary-eyed to the hospital Starbucks before my infusion and started hallucinating. I could have sworn I saw The Boss moving determinedly towards Starbucks at exactly the same pace as me. I stopped and stared. The vision stopped and stared. I waved. It waved. Gah. It really was my boss. He’d done a pit-stop to buy me a coffee and muffin before heading to Screwfix. As you do. It was lovely and we had a good old catch up, slurping away on our lattes, just as if I was back in work.

Third infusion and I realised, not just how lucky I am to have access to such an incredible treatment, but that I no longer have that same level of fear. If that makes sense. The first two rounds, I was fearful of the future, of everything. Now, I feel much more in control. Which is odd as it is my re-activated MS which sent me back here.

Anyway, now I am home and I have used up the rest of the steroid energy by sorting the house out, ready for the inevitable crash.

Tomorrow is another day. But at least the fridge is stocked, the bins are emptied and I have a huge pile of paperbacks to get through. Result.

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Sep 09 2015
10 Comments
Blogging

From Platform 12 To Number 10

Number10Well. Blimey.

What an incredible day I had yesterday.

I’d been invited to mingle with the MS Society’s most influential people and the Prime Minister’s wife at No. 10 Downing Street.

Me.

One personal shopper at John Lewis (‘ah, yes, I can see the problem … clearly‘) and a quick visit to the hairdresser (‘hmm, I’ll see what I can do’), and I was on my way to London.

My outfit was in a suit bag, my book-club book dutifully backed – I’m on page 789 out of 1500 and the meeting is looming – and I was as ready as I’d ever be.

I had the fortune to travel with the Chair of the Welsh MS Society Council and she calmed my nerves. We chatted all the way to London and before I knew it, it was time to change into my Outfit. Hair intact (all that hairspray meant it was pretty much bullet-proof), we ended up in the loos at the Paddington Hilton.

I locked myself into tiny cubicle and changed, a supreme feat of MS endurance. Limbs were flailing, balance was pretty dodgy. I emerged 15 minutes later, slipping on my extremely flat shoes and stuffing my jeans and boots into the rucksack I’d borrowed from The Teenager.

Quick make-up touch-up in the dimmed lights (so heaven knows what I looked like in real life), jewellery on, outfit smoothed down and I was ready to go. And what better way to start the evening with a glass of Prosecco. So we did.

Anyway, we checked in my student rucksack at the Left Luggage and hailed a taxi to 10 Downing Street, passing Buckingham Palace (Queen was away on holiday). And then we were there.

We waited in the pen they have outside Downing Street and I made friends with one of the six policemen with machine guns. He was absolutely gorgeous and I regret not leaving my mobile number, but anyway, we made our way through security (me with a sad backward glance at Handsome Machine Gun Man), x-rays and the like and found ourselves standing outside the iconic building.

We handed our mobiles in at the entrance and then, joy of joys, we ascended the staircase featured in ‘Love Actually’. I was in heaven. We made our way to the reception, to be greeted with trays and trays of drinks and canapes. I studiously avoided the canapes – cream top, I knew what would happen – I’d bite into a Hoisin Duck mini-wrap and squirt sauce all over myself and my companions.

I mingled, I squealed with sheer excitement and mingled some more.

I was told that Samantha Cameron had arranged to meet certain people before her speech, so when she entered, there was an itinerary. But somehow, and I’m not sure quite how (honestly), I found myself next to a famous pop singer whose mother has MS, so I shook hands with the Prime Minister’s wife and had a quick chat.

At the end of the meeting, there were wonderful speeches and we truly are in safe hands, all of us with MS. The message is getting out there – MS is being kept in the public eye.

On the way home (Queenie still not in residence), we reflected on our evening. Then we got to Paddington and I reclaimed my baggage, reverted once more into student clothes, bought a huge burrito and caught the train back to Wales.

A wonderful experience. And my hair is still stiff from all that back-combing.

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Sep 02 2015
8 Comments
The Teenager

All Grown Up

appleI had the joy of accompanying The Teenager into town today.

Sadly for him, his savings are held in his kids account at the building society and he needed my signature to clear it out in order to buy a MacBook.

The woman behind the counter was somewhat startled to see his fun savings book with a grinning little red dragon on the cover.

‘Erm, ok. Are you off to  Uni then? You do know you can change your account?’

‘Gah. I turned 16 a couple of weeks ago.’

‘Ah. Wow. What do you feed him then, mum?’

‘Just porridge.’

Money extracted and with The Teenager slouched next to me, we headed for the Apple store where we were accosted by an eager sales assistant as soon as we stepped inside.

‘Hello young man’, he said, looking up at The Teenager. ‘Off to Uni?’

‘Gah.’

‘Well that’s a shame. If you had a student card you could have had 15% off your computer, insurance cover down from £199 to £48 and a free pair of Beats headphones, retail price £165. Aren’t you tall? What do you feed him?’

‘Just porridge.’

A dramatic pause. Amazingly, something in my brain clicked. I fumbled in my wallet for my student ID from the Master’s course. And I am now the best mum ever, having just saved The Teenager almost £500. He quickly facebooked and tweeted his friends the news while I dealt with the paperwork.

Everything bagged, we left the store, with The Teenager holding his bags with utmost reverence and care. He would stop every now and again just to look at them, stroking the Apple logo with a dreamy, faraway look in his eyes.

Back home, we chatted about his A Levels. He has an induction day tomorrow and I trotted out the usual parent stuff:

‘You’ve got to hit the ground running with your studies. Make mind-maps as you go along.’

‘Yeah.’

‘You’ve chosen to continue your education. A big step. Drink lots of water, keep your brain hydrated. Oh, and don’t forget your pen tomorrow.’

‘Pen, lol. So old-fashioned.’

A bit later, I got a text from The Teenager.

‘School was great today. Am in love.’

Oh. This is a new one. I told him to invite her over for coffee so we could have a little chat.

‘D’ur, Mumzie (his new way of addressing me)  I’m in love with my Mac. Lolz.’

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Aug 31 2015
16 Comments
Symptoms and Treatment

It Is What It Is

it is what it isMS is scary and you have to be pretty tough to deal with it.

Sometimes I think I’ve cheated it, got away with milder symptoms, not such drastic life changes.

Then I remember the falling over, being sacked for having MS, the life-long partner scarpering at the first signs (garbled speech and wonky walking).

So, yes, on the surface, I seem ok. Normal, even. Whatever that is. Then I remember my third course of Campath, due in two weeks. Three days in hospital.

Alone.

Apparently my MS has ‘reactivated’. Which I knew after the bad relapse in the Spring, but it’s always hard to have it realised through a scan, with a bright, enhancing lesion.

Anyway, after years of utter despair, I have come to terms with this disease. I think.

It is what it is. I was chatting to my mum earlier and she was telling me about my dad and his MS. There is no comparison. He died before my fifth birthday, aged just 35,  and one of my earliest memories is of him at my fourth birthday trying to eat ice cream. And failing.

And now I have MS.

Is it a burden to have a parent with MS? I am now that parent, with MS.

I feel a compulsion to try and explore every possible treatment. I have signed up to all the PhD research, I have put my signature to more blood tests for MS research. I make myself available for future courses for people with MS.

Is it enough?

Aug 30 2015
10 Comments
Symptoms and Treatment

It’s My Hormones …

hormonesIt’s not much fun being fat curvaceous yet existing on a diet of chia balls and raw carrots with a single square of dark chocolate to brighten the dull evenings.

Ever since MS treatment played havoc with my thyroid, it’s swung between being over-active and under-active.

When it was over-active, the weight loss was quite spectacular (sigh), dampened only by ending up in hospital with severe heart palpitations and an inability to sit still for one minute.

Now it’s under-active (and then some), it’s dire. After gaining a pound every single day with my usual eating habits, I knew I needed to take drastic action, hence the carrot sticks.

So, after chomping my way through mounds of vegetables, getting to know my spiralizer (courgette spaghetti, yum), working out what farro is and how to make a lunch out of it and generally becoming a food bore, I haven’t gained a pound. But I haven’t lost any weight either. The unfairness of this is breathtaking.

Anyway, it was with much excitement that I went back for yet another endocrinology appointment last week. Would they reduce the medication, perhaps allowing me a glimmer of hope that I could wear a jolly sweater at Christmas without looking like a bauble? Could I increase my chocolate intake to two squares a night?

First up, the humiliating weigh-in. I tried balancing on one foot, but the nurse caught me out. ‘It’s my hormones’, I told her, ‘honestly‘. She looked at me with pity and waved me back to the waiting room, where I pulled out my never-ending Book Club book – only 1100 pages to go.

Finally, I was called and ushered into a tiny room. The doctor ran through a lot of numbers and letters, pausing every now and again to check some details. ‘You do know your thyroid is now rather under-active?’ Um, yes? Then she said the magic words, ‘I think we’ll halve your medication.’

‘Fabulous! Can I start today? Please?’

She gave me one of those huge hospital prescriptions and told me to take it to my GP, who would then convert it to a normal prescription and then pass it on to the chemist I have a repeat prescription with. Which could take a month. But I had a cunning plan.

On the way home I stopped at a pharmacy and asked if they had a pill-cutter.

‘You’re in luck, this is the last one.’

I drove home, emptied out all the tablets and neatly guillotined them in half.

That evening, I had three squares of chocolate.

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