My 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?
Well it sounds like you have covered all your bases and are going fully prepared! It sucks that you have had the relapses but it’s such a positive attitude to take to going for your treatment. Strength of mind definitely helps doesn’t it? I am ever curious about relapses, having had 2 blips myself this year but not really having confirmation they were relapses( ms nurse tends to put everything down to infection it seems?)
Thank you! Yup, I get that a lot – infections. And the funny thing is, I’m generally ‘healthy’ bar the MS. I never seem to pick up infections!
And yes, strength of mind definitely helps. I’m so glad I can access this treatment, but obviously, I wish I wasn’t, lol. If only my MS behaved!
x
Keep strong missus!! 😀
Ta! S’all good!
xs
Yep I never get those odd infections which my nurse speaks of either! MS does seem to sneak up and jump out at the most annoying times doesn’t it? Highly inconvenient! I do think thats one of its most difficult characteristics. And I admire your strength of character totally. Also got my fingers and toes crossed that Thursday morning results day in both our houses goes well!!
Thank you! Thursday will be testing 🙂 Good luck to you guys too!
MS definitely has a mind all of its own. I was doing pretty well and Campath definitely, totally helped. Don’t know where I would have been without it!
x
Good luck. Hope this sorts it out good and proper.
Tysabri, might this be a possible solution?
Thank you! Tysabri was the other choice back when I was first diagnosed, but I didn’t really want to have the monthly infusions :-(.
But, have heard it’s great and very successful.
x
I’m cheering you on from the stands and keeping you in my heart. We’re all thinking of you, girl! Your mum’s healthy salads and treats sound luscious. That’s a great picture of your cat. I didn’t know he’d broken his leg. You sound prepared, night lights and all. Take care. xo
Lol, not my cat 🙂
Yup, all prepared this time around, and I’ve just heard that the same nurses will be there too, which is lovely. I’m an old hand at this now!!
x
Love the cat picture.
Sounds like you’ve got it covered.
Good luck with the treatment. Just not sure the ward will allow tea lights. Check first. oxygen plus naked flame equals fire. That’ll put a spark for your time in hospital. ? xx
I know, was thinking that 🙁 Just, as it’s a day unit I’ll be on, I might be the only one sleeping there overnight. Big scary ward all on my own!!
x
Hello, Your blog is great! Sorry to hear you’ve got to go back to the hospital, but glad you know there’s something that will help.
I’ve never heard of Campath. Is it an IV infusion? I’m trying to educate myself about NON-st
Thank you! Yes, it’s an infusion. The first time, you have it over five days, then for later courses, over three days. Just got to lol around in bed hooked up for hours and hours!
x
Oops!! I’m trying to learn about non-steroid treatments. After so many 1,000mg IV infusions of prednisone, I developed Steroid-induced diabetes. And, it gets better: I am allergic to an ingredient in the oral medication. So now, every night I have to inject myself with insulin (in my stomach). I didn’t know you could get steroid-induced diabetes – had never heard of it.
Sounds awful, i’d never heard of that either. I always feel dreadful after taking steroids so tend not to take them any more for relapses. Mind you, you have to take steroids alongside Campath as it can bring about a relapse, gah.
x
Chooka’s!! Happy campathing! I think one of the hardest things to accept about that malady MS is it takes away the control that we thought we had.
Very, very true. I had such plans for the autumn!! Oh well, it’ll all work out. Hopefully!
x
sounds like you have everything covered . Good luck with it all 🙂
Thank you! Just about, but will probably get to hospital and realise I’ve forgotten my toothbrush or something, lol.
x
Hi. I’ve been following your blog for ages – love it! I think we share the same wonderful neurologist. I just want to wish you good luck with your next campath treatment. I had my third dose of Campath back in 2003 and I have only had one relapse since then. It certainly worked for me. I still have lots of MS symptoms but no scary relapses for the last 12 years. I am not frightened of the future any more. Hope it works well for you too! x
Hello and thank you!
That is so amazing to hear, and reassuring. We have a fabulous neurologist :-). He’s been really supportive the last couple of years.
If I can go twelve years without a relapse, I’d be over the moon! We’re so lucky to have access to this treatment.
x
p.s. there’s a great MS group that meets the first Tuesday of every month, 7-9, at Zero Degrees in Westgate Street in Cardiff city centre if you ever fancy going 🙂