Tag Archives: Campath

Jul 22 2013
35 Comments
Symptoms and Treatment

Wish Me Luck As You Wave Me Goodbye….

lucky catI’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…

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May 10 2013
20 Comments
Symptoms and Treatment

Stumbling In Crutches

imageI am feeling rather sorry for myself. As I write, there is a pair of crutches next to me and I am floating among pink, fluffy clouds thanks to the strong painkillers.

Yesterday I fell quite badly, and to be fair, it wasn’t due to the MS, it was me not looking where I was going.

Unfortunately though, my MS treatment has left me with a tendency to have out-of-proportion bruising, so my leg is now a fabulous riot of colours and has swollen so much I can’t get my jeans on. To top it off, I think the shock of it has increased my nerve pain temporarily so I’m buzzing and tingling all over.

The bruising must be impressive as The Teenager keeps wanting a look at it, saying ‘ewwwwwww’ before taking another look.

All in all, not the best of days. Thank goodness for family and friends. My partner-in-crime at the museum trip (see post below) came up trumps and after making numerous phone calls, tracked down a pair of crutches I can borrow. My mum is carting away loads of laundry for me and drops round food supplies, flowers and news of the outside world.

So, yet again, I am whiling away the hours at home, not studying, not writing up my essay notes and chomping obscene amounts of Maltesers and Bacon Bites. Ho hum. I have worked out how to switch on the fire with a crutch without getting off the sofa, I count down the hours to my next lot of painkillers and The Teenager has had two takeaways in a row.

I’d like to say I have learnt something from this experience, that I will never, ever take my health for granted, but hey, didn’t I just go through all this recently with the whole MS saga? I don’t need any more time out to re-evaluate the direction of my life. Been there, done that, drowned my sorrows.

So I’m off to have another pity party and pop more painkillers. My mum is at the supermarket buying me a tub of prunes. Life goes on…

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Apr 30 2013
14 Comments
Daily Life

A Back-Handed Compliment

But You Look So Well‘But you look so well.’ A loaded sentence most of us with MS hear at some point.

I hear it a lot, along with ‘but I heard you were ill’. The complex nature of my, so far, mostly hidden illness.

What they don’t see is the work that goes on behind the scenes. Yes, I look fine for that hour or so. No, they don’t see me taking ages to get ready or lying on the sofa afterwards. Or the long evenings spent alone at home, too tired to go out with friends.

I’m proud that I still want to look my best, but not fitting the physical perception of the ‘sick role’ can distort the view people have of me. I’m used to it, or so I thought until Saturday.

I was at an MS meeting. At the end of it, we gathered around in groups for a coffee. I was talking to a friend when suddenly a woman I had never seen before pushed in and without any greeting, asked if I had MS.

‘Um, yes?’

She looked me up and down before saying, ‘but you look so well.’

It was the ‘but’ that threw me. She didn’t say, ‘great to see you looking so well’ or ask how long I had been diagnosed. I felt immediately guilty, as if I had to justify myself. I had always thought that I was ‘safe’ with other people with MS – no need to explain nerve pain, fatigue or the general fed-upness that goes with MS.

I told her that I had been having relapse after relapse and had been offered Campath (Alemtuzumab) treatment and touch wood, no relapses since last May.

‘Relapses? Hah. I never had any’ she said.

‘Oh. Is that good?’

‘No! I’ve just gone downhill. I have primary progressive MS. We don’t have any miracle cures. Nothing can be done for us, all the research, all the meds go on the ones with relapsing remitting MS.’

Awkward. What do you say to that? I made my excuses and wandered away. I wasn’t in the mood to be challenged. I went home deflated and upset. I did see it from her viewpoint, but it was the abruptness of the exchange that threw me. I don’t want to justify myself to other people with MS. I have to do it enough to everyone else.

I went home, dragged my duvet onto the sofa and fell asleep. 4pm and the day was over.

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Apr 06 2013
6 Comments
The Teenager

Single Parent, Multiple Sclerosis

Our little family has adjusted fairly well to life with multiple sclerosis, but now and again it throws up some major hurdles.

Even though my ex-husband and I are happily divorced and are bringing up The Teenager as well as we can despite the 140 mile distance between us, there are definitely times when it would be handy to have a partner around, or at least in the same city.

I’m booked in to hospital for my second round of Alemtuzumab treatment during the summer school holidays and it’s coming round far too quickly. The Teenager will be at his dad’s for a week as usual and with the way the dates have worked out this year, I will have just one full day to recover at home after three days in hospital before The Teenager is home again. I am panicking. Slightly.

Last year, the Alemtuzumab left me exhausted, weak and under the weather and I had several weeks sick leave from work but I also had three clear days on my own at home to start to recover.

I’m not so much worried about me, but about how The Teenager will feel seeing me lying on the sofa even more than usual. Is there anything more depressing than an ill parent? I tried to have a chat with him about it the other day and he’s promised me that if I buy him enough pizza, he’ll be fine, so here’s my plan to get through the first week or so:

  • Pizza
  • Accept all offers of help
  • When he’s out with friends, have a sleep, so I’m fully(ish) awake when he’s back
  • Encourage/bribe The Teenager to have friends for sleepovers
  • Stock the fridge with lots of good-quality ready-meals
  • Ignore the dust
  • Keep explaining that the treatment will ultimately make me much better in the long-term
  • Pizza

My friend’s daughter has offered to cat-and-house-sit again, so that’s one less thing to worry about. I’ll also organise a huge grocery delivery just before I go to hospital. I know what to expect this time round, so hopefully I’ll be better prepared than last year.

I was feeling very chuffed with my list and plans, then I checked my diary again. Yup, I’ll be turning 40 less than three weeks after the treatment. Now I really am panicking…

(no small violins were harmed during writing this blog post)

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Mar 05 2013
21 Comments
The Teenager

The Teenager Speaks…

I’ve got a pretty special guest blogger today – my son, The Teenager, asked to get involved and this is what he wanted to write, no editing:

When I first found out my mum had MS, I didn’t know what it was so I thought it could’ve been anything so I was very worried.

It was the day that I was coming back from London after seeing my dad and instead of my mum picking me up my mums friends did and I didn’t have a clue where my mum was. I was told she was ill but I didn’t realise that she was in hospital.

I was dropped off at my Nana’s and she explained what was happening. I went home after my mum came back and because of the MS she couldn’t speak properly and we had a good laugh about it, taking the mick. It was still worrying me though because I didn’t really know what was totally going on.

But as time went on things got better I realised that there were worse things in life than MS and that my mum didn’t have as bad a MS as lots of people do. Me and my mum have met lots of lovely people through my mum having MS which is a good thing. In October 2011 when I was 12, we went to a MS march in the city centre which was a lot of fun and there were lots of nice people there.

I have learnt a lot of stuff through my mum having MS. Of course I still worry a tiny bit but nowhere near as much as I did. My mum’s best friend, the builder, has helped a lot and it is nice to have him as company.  After a year of my mum having MS a lot of good things have happened. My mum has been very lucky to have Campath (Alemtuzumab) treatment in the local hospital. It did sound scary at first but it helps my mum a lot.

I am hoping that in the next few years me and my mum will meet a lot more people with MS and go to lots of different MS based things. In the town centre the shopping centre has been sponsoring the MS society and they are selling ‘MS wrist bands’. A lot of my friends are now wearing these and it is nice to see support shown for this and hopefully more people will start to wear them.

Overall even though my mum has MS she is still the coolest Mum ever and nothing will ever change that.

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