I’m off to hospital today for my second Campath (Alemtuzumab) infusion and have spent the weekend preparing myself (read more about the treatment HERE). The Teenager’s in London, the house is quiet and my bag is packed.
This year, I’m taking no chances. The first thing to go in the bag were two soft and squishy pillows. Last time around, one of the nurses hunted high and low to provide me with an NHS pillow and came back holding a sad slab of foam.
I’ve also got my bags of dried fruit and nuts, a family-sized pack of Jelly Babies, some Belvita breakfast bars, a mini hand-held fan, a stack of books (which I probably won’t read) and some earplugs.
I’ve had a lovely, relaxing weekend. On Saturday, my boss took me out for a pre-Campath dinner at a local marina. This is in sharp contrast to last year’s Campath treatment, when I was working for a boss who would sack me for having MS just a few months later. There were no good wishes, no cards, no phone call to ask how I was doing. Thankfully, that’s all ancient history.
I held a Listeria Feast yesterday, eating all the foods I won’t be able to enjoy for three months – salami, sushi, coleslaw, fruit salad, raw carrots and a huge tub of soft serve ice cream. Also some camembert, which I don’t even like, but if I’m going to be denied it for three months, I was going to eat it for good measure (nope, still don’t like it).
Staying for three days on a neurology ward means that my days will be filled with answering questions from nervous-looking people booked in for lumbar punctures. Hmm, tricky one. If I lie and say it’s a breeze, they’ll quite possibly drag me out of bed and beat me up afterwards. If I tell the truth, based on my own horrific experience, they’ll run screaming from the ward before the needle’s even gone near them.
So, wish me luck. I’ll be back in the blogging seat again on Thursday. Just hoping I can still tweet from my hospital bed…
Good luck! I’m often too out of it to leave a comment, but I’ve been wanting to say how much I enjoy your posts. You write so well about what it’s like to live with a crappy malady. I do hope your infusion goes as well as possible.
And I do hope the hospital has air conditioning! Yike! I can’t believe the weather you’ve been having over there!
Aw, thank you so much!
Last year’s Campath, was in hospital during a heatwave too, lol. It’s been such a difficult few weeks with the heat.
X
Good luck hope all goes well
Thanks Tony!
X
Wishing you all the best of luck. Hope they let you tweet in hospital. Best wishes, Jenny
Thank you! Can use my mobile no problem and the visiting hours are completely open which is fab. Dreading lunch though, lol.
X
Hi B.
Just a quick note to wish you all the best and let you know I’ll be thinking of you.
Warmest wishes,
Jan x
Thanks Jan!
They just put the cannula in – that’s the worst over!
X
I hope it goes ok and you keep well after too. Take a good rest, we’ll still be here.
I finally got my dx last week, RRMS. Going in to discuss treatment in 9 days.
I was wandering, has anyone had a lumbar done by a radiologist? My lumbar was a failed effort and the doc said a radiologist could do it, but the neurologist said ‘we don’t ‘really’ have that facility’. So maybe they can if I can persuade them to fork out for it.
Anyway, with thunderstorms brewing I think we have some relief from the heat coming!
Good luck. Julie x
Hi!
I’ve never heard of that before? Hope you’re ok about your diagnosis.
Looking out the hospital window and can see the clouds getting darker – bring it on!
X
Hope it goes well and your MS relapses occur a lot less frequently.
My niece, who lived in Penarth, had Campath twice and has had no further occurrences of MS
I haven’t had a relapse since last year, so touch wood. When you say she had no further occurrences of MS, do you mean she wassymptom free? I’ve still got all my old symptoms, just no new ones.
X
Good luck, I hope all goes well, great the cannula is in fine 🙂
Can I ask why you cannot have those foods for 3 months? Sorry to be nosey, just trying to learn as much as I can about other people’s treatment experiences.
Sam xx
Hi!
Blimey, cannula hurts. Am self-medicating with wine gums.
Think it’s about avoiding listeria as immune system is down?
An hour left of campath today! Then the same again tomorrow.
X
Sorry about your diagnosis Julie x
If I can be any help with the treatments, DMDs, please let me know. If you wanted to have a look at a website called MSDecisions, it can be very helpful in helping you narrow it down and gives you all the info etc.
Sam x
Thanks for that Sam – that’s a really good website. I knew nothing about DMD’s when I was diagnosed.
X
Thank you Samantha I’ll have a look at that now. I am fine about my dx. Having been mis-dx with strokes after the first 2 relapses last year I think ms is preferable. The thought of a 3rd (and probably fatal) stroke hanging over me was very frightening, especially when I went into the stoke unit with my 3rd relapse. It was then they began to think they had it wrong, it was a relief in many ways, I thought my time was up!
Thanks x
Takecare x x x x
I will. The staff are amazing here. Really well looked after! X
Oh, good luck!! We’ll miss you! But, as you Brits might say, you’ll do brilliantly!! 🙂
Ms. C-Px
Ta my dear! Have a fellow Campather I’m same ward. Happy days! X p.s food is vile….
ok, wishing I hadn’t Googled it. OUCH! But, on the bright side, it seems that you can get a fab piercing while you’re there. (And won’t The Teenager be impressed?):
Cannulae are used in body piercing when using a standard IV needle (usually between 18GA and 12GA, although may be as large as 0GA, in which case the procedure is known as dermal punching and uses a biopsy punch without a cannula), and for inserting hooks for suspensions.
During piercing, the fistula is created by inserting the needle. The needle is then removed, leaving the cannula in place, which is sometimes trimmed down. The cannula is then removed and sterile jewelry is inserted into the fistula simultaneously, in order to minimise trauma to the fresh fistula caused by insertion of blunt-ended jewelry.
Haha! I deleted your previous comment by mistake as am using phone for wordpress in hospital, meh. The one where you thought a cannula was a desert!
Do you think if I ask nicely, they’ll do one for me??
Everything going well so far apart from an hour of extreme neuropathic pain when the campath kicked in.
Not long to go!
X
getting your nose pierced doesn’t hurt 😉 could be a brave thing to do for your birthday. (tongue doesnt hurt either, and its great if your need to lose weight :p)
good luck with everything 🙂
Wow! I could lose weight with a tongue stud?? *scribbles down on ‘to do’ list.
X
its because your tongue is so sore, you can’t eat anything :p
Justwhat I need. Would probably stop me talking as much too. Boss would be delighted! X
Good Luck. …. Hope the time passes quickly.
Thanks! It’s gone really well. Am just so grateful to have this treatment. Mustn’t grumble. But the hospital food is still grotty, lol. X
Hi B, Just to wish you all the best with your treatment. Anita x
Thank you! Going ok-ish, just feel nauseous and tired. But all worth it!
X
Hope you’re hanging in there! Just wanted to send a quick note to say I’m thinking about you! X
Hi there,
thank you! Well, am all safely back home after hours and hours of infusions. But it was also lovely as met some fab people and learned how to ride a disability scooter, lol.
Everyone’s been amazing, feel truly blessed to have so much support and hugely lucky to have had the Campath. Just going to take it easy for the next few weeks.
X
That sounds fab lady! Glad to have you back amongst us!! :-)) I know I’m a little late with my comments but I’m hoping everything went well madam!!
Go home chill out! Play with your pooch! 😀
Thank you!
x