I had a letter a couple of days ago confirming that I’ve been booked in to hospital for my follow-up Alemtuzumab treatment in July. Last year I was in for five days and four nights.
This year, only three days and two nights. Looking back on it, I was a complete hospital novice. So here’s my list of what I will be doing differently this time around:
- Pack my own pillows. The hospital ones (if you are lucky enough to get one) are super-thin slices of foam. And that’s being generous.
- I won’t be taking a huge pile of books. I ended up reading only newspapers and trashy magazines, but I did learn a lot about Heidi and Spencer Pratt’s marriage and Cheryl Cole’s beauty routine.
- Staying overnight in a Neuro Day Unit means you have absolutely no privacy all day. People come and go for tests and treatments, usually bringing a bunch of family members with them. It’s like having a whole load of strangers parading through your bedroom. Must also remember to lie when people ask me if lumbar punctures hurt (they do, I was a screaming banshee).
- Cannulas hurt like hell too and it stays in the whole time. Must get it strapped up when not in use as do not want to recreate the Psycho shower scene like last year.
- Much as I loved the regular tea trolley trundling around at all hours, it tastes awful. Will make regular trips downstairs for the hard stuff.
- Accept all the sleeping tablets I can get my hands on – hospital beds are uncomfortable, some lights stay on all night and there’s strange people wailing down the corridor.
I will be a calm, confident patient. I know the score this time round. Still a sobering experience though, when the reality of MS really kicks in, far more than just putting up with symptoms on a day to day basis. This is real. The doctor says so.
So when everyone else is packing for a week in the sun, spare a thought for me as I pack my pyjamas, fluffy slippers and selection of snacks to munch on (Jelly Babies, dried banana slices and cookies). God knows what I’ll look like walking through the hospital corridors on my way to book in, struggling with a huge bag and two pillows under my arm.
One other point – do hospitals have wi-fi? How will I stay up to date with my blog and Twitter??
Good plan of attack, SIF, you hospital-stay-hardened-veteran, you! Trashy magazines sound perfect for that kind of visit. I bring my pillow everywhere (I’m very particular about my pillow).
Two Important Questions: (1) What’s a cannula? (I want to be sure to avoid this procedure.) (2) You have to have a lumbar puncture *every* time? (Can the doctors give you relax-y drugs ahead of that procedure? I was such a sniveling baby about mine that my doctor gave me some kind of mellowing drug, which helped. Did nothing for the horrendous post-procedure headache, though.)
If it makes you feel better, I have no jaunty trips to exotic locales planned for July, so I can spare you a thought or two while I’m sitting where I am now: on my couch in my decidedly un-exotic neighborhood.
The hospital better have wi-fi. We’ll want updates and a way to send you encouraging comments!
hello Cranky!
Well, a cannula is a thin tube inserted into the vein to administer the Alemtuzumab, normally put in the front of my very thin skin on my hand, meh. Hurts a lot. They pump you full of steroids, then the Alemtuzumab. Would be nice if I could have some gin, too,lol.
Luckily, I only ever had one lumbar puncture as my spinal fluid obligingly showed up those oligo-something bands first time around, yay!! I did have the headache from the devil’s own bowels though. God, it was the worst thing ever. No words can describe.
Last time I was in hospital for that week, I witnessed a procession of poor peeps, all smartly dressed and relaxed. To pass the time, they asked me what I was in for and we chatted. Then they asked the killer question, ‘does an LP hurt?’ Well, what could I say? They probably saw the terror fleet across my pasty face, as I visibly shook.
Bless them, I have seen grown men scream like babies.
You MUST send out positive thoughts. I will try to find a wi-fi hot spot to post updates and pics of my sad little bed with my pillows, lol.
X
Ah, I see. I have had multi-day infusion of steroids, but the needle was stuffed into a vein in my inner arm. I have pictures that I’m saving for a Very Special Post on the awesomeness of steroids. I have also a picture of a grotesque bruise that I’m saving for a Very Special Post on the awesomeness of my daily injections. (Sadly, I didn’t place Wee Squeaky in either shot.)
“Devil’s own bowels” haha! That sums it up nicely.
I’ll be a beacon of positive vibes, so you must find that hotspot. I’ll also arrange for some gin to be delivered. What could possibly go wrong?
Enjoy your chocolate (she said, seething with envy)!
Steroids rock! I clean my house from top to bottom when I’m on them. Just a shame about the moon-face and zombie appetite.
X
Sucking on hard candy (aka sweets) helped with the taste. Also, I was told to drink tons of Gatorade. Apparently, you lose a lot of electrolytes — or something — in your, er, urine (I was in the bathroom constantly), so I swilled loads of Gatorade. The acne was an unexpected delight.
Hello,
Thank you for your kind words the other day xx
I didn’t realise you had to be in Hospital that long for infusion 🙁
How do you find the steroids? I’ve heard of nasty bad taste in mouth reactions etc.
Could I ask if you started off with your current treatment or whether you have tried another DMD. I’m in a right ol pickle trying to choose! I have to have an LP first, he wants to check for those bands! I take it they don’t numb the area first? I’m dreading it big time. Needles and spines should not mix, it makes me cringe.
Sam xx
Hey Sam,
I was thinking about you earlier!! How you doing?
I found steroids excellent for speeding up recovery through a relapse and I absolutely adored the energy. BUT very bad taste in mouth and I was absolutely ravenous. Also, big fat face with all the water retention. I haven’t taken any other DMD’s, and I have a funny feeling that made me more eligible for treatment, but I might be wrong. As soon as I was diagnosed with highly active MS, I was offered that and Tysabri straight away.
So in a way, the decision was made for me. I’ve met lots of people who swear by Tysabri and wouldn’t touch Alemtuzumab with a barge-pole. Have a good old chat through with your MS nurse – they usually come out to your house for the first visit after you get diagnosed.
With LP – first off – don’t panic. I had a doctor who had NEVER done one before, and it showed. I think they do numb the area, but as mine took over an hour (!), it quickly wore off. He kept on hitting the bone, which was pretty traumatic. Best advice – scour the internet for tips, be prepared (mine was sprung on me straight after my first MRI). You MUST lie flat for at least an hour afterwards, if not longer. Then go home and lie down for the rest of the day. Apparently drinking caffeine helps too.
Most importantly, relax. Crankypants said she was offered a relaxant beforehand, so maybe worth discussing if you’re particularly nervous?
Keep in touch!!!!
X
Hi Samantha,
Because I have no life and seem to sit in front of my computer all day blog-stalking Stumbling in Flats, I’ll weigh in on the LP.
My experience wasn’t that bad, honestly. I made a huge whiny fuss about it in advance, so my neuro took pity on me and told the doctor who’d be doing it that I was a scared chicken the likes of which she’d never seen from an adult and to please be extra gentle. Then, as SIF mentioned, she gave me some kind of drug to help me relax. Some combination of the above worked. I felt pressure more than anything. What I was totally unprepared for was the headache afterward. It took a while to kick in, so I foolishly went back to work afterward, thinking the whole headache business was not a big deal. But a couple of hours later I was in misery. It’s true, remaining flat on your back is the best way to ease the pain (I ended up counting the number of seconds between flashes on the smoke detector on the ceiling). It’s rather dull, obviously, so if you can arrange for some kind of ceiling-mounted entertainment, that would be ideal.
Best of luck!!
Ms. C-P
Thanks Crankypants!
Excellent advice. I too went back to work that same afternoon. Big, huge, massive mistake.
Sam, lie on your back the rest of the day, get someone kind to feed you grapes and chocolate and get pampered. Reflexology session while you’re lying down??
Just take it easy. You’re so newly-diagnosed, everything seems confusing. But you’ve got us!!
X
Thank you both so much xx
I’m so grateful for both your support.
Sam xx
With pleasure!! Keep us updated Sam. Thinking of you.
X
Happy to help! Yes, please do keep us posted.
If I have to stay in hospital overnight I have to have an eyemask to block out all the light and my iPod so I can block out all the noise! I’m a stupidly light sleeper and the slightest noise will keep me awake. It doesn’t help when everyone wants to chat at 3 in the morning because you are the only other person awake.
Hi there!
Why oh why oh why didn’t I think of an eyemask??? Genius idea, thank you!
X
Glad I have helped in some small way!! Hope all goes perfectly. Xx
Thank you!
Must find a really snazzy one…
X
p.s. last time I woke in the hospital in the early hours, there was a man wandering the corridor with his hand down his boxer shorts, gulp.
Revolting! It wasn’t the same old man in the loose trousers from the doctor’s office, by any chance?
Ha! Don’t think so, lol. He did this ALL the time, bless him.
X