Sunday, 14 November 2010

Rituxi - Madness

So here is the story of my second Rituximab infusion which took place in all its glory on Friday. I mentioned before that I was a little nervous about it, I’m not really sure why. The thing that frightened me most on the day was that the infusion was given in the cancer ward of the hospital, making me realise just how serious this condition is. The fact that I was mixing with people having chemo and blood transfusions (amongst other things) was a little off-putting. But I tried not to think about that.
 The nurses, as usual, were lovely and welcoming but I had the feeling it was going to be a very long day. It’s funny that hospitals have this weird affect on me. I have been in them so many times before but I can’t shake the feeling that something is going to go wrong or I will get told some awful news when I am there. I relaxed into my surprisingly comfy chair (which was an electric recliner, hell yes!) while the nurse punctured my hand with the canular (which may I add was ridiculously painful).
 The treatment itself usually takes around 5 hours, with the infusion being fed through a drip into your body, but with all the other things I had to have (saline solution drips, steroid infusion, constant hook ups with the obs machine) it’s pretty much a full working day in the chair. Once the treatment started my nerves seemed to fade, I think I was relieved it was finally happening. My mum was there for company which was great, don’t think I could have sat there in good spirits all day without her.
 I was exhausted after the first hour or so, trying to drift off to sleep but every half an hour I was strapped up to the obs machine to check my temperature etc so it made it difficult to nod off. The usual hot flushes, extreme tiredness and dehydration occurred throughout the day. I honestly felt like I was going through the menopause or something with the ‘granny sweats’ (as I call them) I kept having. But it was all fine. I finished up the infusion early evening and was allowed to go home. All I wanted to do was eat and sleep. It’s amazing that doing nothing can make you feel so exhausted but I suppose your body is trying to process what has just been poured into it.
 The day was made slightly more exciting with the edition of Company magazine that I feature in being out in the shops. Mum rushed to get a copy and we had a good read of what is an incredible article, I must thank the team at Company for that. It’s pretty exciting that my story is being heard and I hope it helps some other young people find some comfort that they are not alone and things can get better with a little positivity. I have only been asked for my autograph once (but there’s still time as it’s out for a month!) That’s enough Rituxi-madness for one week, I’ll be back to do it all over again in 2 weeks time... when will the party end!


  1. I read your article in Company Magazine and I got very close to tears; I was diagnosed with RA just before I turned 21, and like you I was very shocked. My mum also has RA and thankfully she's been a great support to me as she's such a strong person, but I'd been going through a bit of a slump lately (I've been on several different medications as none of them were working, or they were giving me funky side effects) and reading your article not only made me realise how lucky I am, as I don't suffer as badly as you do, but how precious my 'healthy' time is (when I'm not poorly/having a flare up). I just wanted to say thank you, you've made me realise moping about solves nothing, and now I'm staying positive :)

  2. Hello, I too read your article in Company Mag, I am 36 and have been suffering with RA since having a bad cold about 4 years ago. I am a mother with 3 children and sometimes find it so hard to do even the smallest things for them (like get out of bed and make there packed lunch). Since reading your article I have made my whole family read it as its the only thing I have found that totally describes how I feel at times, your amazing, you have made me both smile and cry. Thank you xxxSharon,Kentxxxxx

  3. Hi! I'm another Company reader. :)
    I just wanted to thank you for raising awareness for RA, particulalry in us young women. There are such strong preconceptions about it being an 'old person disease', but that obviously isn't the case.
    I'm 20 and was diagnosed with seronegative arthritis this September. Your article made me realise I've actually been very lucky that my condition isn't very aggressive and I'm responding well to treatment. I'll never, ever take a pain-free day for granted again.

    I really admire your strength, thanks for sharing your story. It means a lot. xxx