Tag Archives: Campath

How Not To Convalesce

illnessTime off to recover after Campath is a tricky thing.

Viewed in a certain light, it’s an excellent chance to slow down, take stock and make the most of the enforced sofa-rest, cushioned by a pile of books, a stash of chocolate and box sets.

In normal life however, without my very own Mr Darcy, the washing piles up, The Teenager has started his A Levels, the cat insists on bringing home an endless parade of headless mice and Ocado have emailed, imploring me to book my Christmas Delivery Slot, NOW.

In between bouts of complete and utter exhaustion, I’m battling to keep the show on the road. Plus I’m trying to think laterally and use the time off not only to rest but also to get ahead, i.e. work my way through the entire University reading list for next term.

I had all the books delivered, settled down, unwrapped a bar of Green & Black’s and prepared to be inspired and transported to wondrous new worlds.

Bad idea. I checked the syllabus. I checked the books. I emailed the tutor. ‘New and Experimental Writing’. Let’s just say, I have no idea what Gertrude Stein was taking when she wrote ‘Blood on the Dining-Room Floor’.

However, I ploughed through, ticked her off my list and moved on to the next one. Excellent. Somehow, I have moved into a Poorly Routine. I get up early when I have most energy, do something outside the house, get back by lunch then snooze through the entire afternoon. Then, I wake up, cook dinner, snuggle under my blanket again and wait for bedtime. It’s been working. For a while.

Two days ago, same routine. I got up early. Then fell on the floor.

Oh. Painful doesn’t begin to describe it. I was in agony. I could barely walk and somehow made it downstairs through a combination of swearing, clinging on to the handrail and thumping. By some bizarre coincidence, I had booked in to see the chiropractor, more for The Teenager than for me (scrums, head-locks, dodgy balls).

Long story short, my psoas muscle is in spasm. The pain goes through my pelvis and groin and out through my lower back. Walking is excruciating. According to the chiropractor, it’s all due to my sudden inactivity. Lol.

When I told my MS nurse I planned to return to work ten days after Campath, she laughed, then said, ‘no you’re not’. Ok then. Quick call to The Boss to explain the situation. His reply? ‘Didn’t notice you were off, Half-Shift. Or should that be Sick-Note?’

Charming.

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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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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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Life, Interrupted.

lifeI’m all booked in for Campath (Alemtuzmab), Round Three in mid-September.

Only problem is, so is The Teenager for his A Levels and me for my second year of the Master’s. Oh, and work.

My mind is spinning with lists, plans, worst-case-scenarios. And what on earth do I write about for my dissertation?

Luckily the pesky MS melancholia has lifted somewhat so I am no longer drifting aimlessly around the cottage full of angst and woe. Instead, I am bumping around the house like a pinball wizard, clutching bits of paper.

I really didn’t see this third course of treatment coming. I had imagined it somewhere else, years and years down the line. When perhaps I could stay in hospital and knit myself a bed-jacket and thumb through old copies of People’s Friend. And maybe commiserate with the lady next to me, bless.

In reality, I’m rushing around in between work, buying pyjamas, slippers, mini bottles of shampoo and conditioner. The Teenager is sorted. The cat is sorted. I’ve told Uni. I’ve ordered a pile of books to read when I’m off work.

In amongst all this rush, I need to take a step back and … breathe.

After my last relapse lifted, I was doing just fine until yesterday when MS slapped me once more right  in the face: I was suddenly pole axed. I staggered home from work, crawled to the sofa and fell asleep. When I woke up, I rationalised it, ‘it’s a one-off, it’s fine, it really, really is fine.’

Today. Before a thyroid appointment at hospital, I fell asleep. It’s fine.

And this is MS in a nutshell. You just never, ever know how it will be. From one day to the next. Like most of you, I wake up every single morning not knowing what MS has in store for me.

Funnily enough, the endocrinologist asked me when I last felt awful. I consulted my Little Book Of Symptoms (Both Weird and Fairly Normal) and said, ’29th July’. She looked at my blood test results, ‘oh, yes, there was a blip then, did you feel anything strange?’

Well, that’s a very, very long story …

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Third Time Lucky …

campathMy MS has been slowly getting worse again, so I’m booked in for a third course of Campath (Alemtuzumab) next month.

I had a sneaky relapse earlier this year and another one just the other week.

First off, I know how lucky I am to be eligible for the treatment; the earlier two courses put a stop to the relentless grind of relapse after relapse.

I got my (so-called) life back on track. Things were good. Until they weren’t.

So now, at the busiest time in our work’s history, ever, I’m frantically sorting out details:

The Teenager – he will (hopefully) be embarking upon his A Levels (all will be revealed on Thursday). I want to make sure he’s settled and happy before the Campath. My wonderful friend, who lives just down the road, will be having him for two nights.

The Cat – she has a reserved place at a cattery ‘overlooking beautiful Welsh countryside’ and her cat basket is safely stashed in my car boot. With her favourite blankie.

The University – which starts two weeks after hospital. Gah. I’m booked in to sort out a scribe, in case I’m not well enough to attend that all-important first lecture.

The Book Club – a week after Campath. I have diligently started reading ‘A Suitable Boy’, all 1500 pages of  it.

And as for the hospital trip, after the last two times, I’m feeling more than prepared. I will bake a batch of chia-seed energy bars to take with me, should the snacking compulsion overwhelm me. No more Jelly Babies and Maltesers. My mum has offered to bring in fresh salads and tempting-yet-healthy treats.

No books this time, certainly not ‘A Suitable Boy’. ‘Erm, excuse me, would you please stop screaming through your lumbar puncture, I’m losing my place. Ta.’

Pillows, natch. Favourite blankie (it’s not just the cat). Stash of magazines, from which I will snip out a pile of ‘must-buys’ before binning them. Ear-plugs, notebook to scratch down my very important musings upon hospital life, mobile phone, herbal tea bags, a few tea lights to brighten up the ward in the evenings.

It will all be fine. What could possibly go wrong?

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