Wednesday, 9 September 2009

Portacath update!

It is two weeks yesterday, until my next Tysabri infusion. It will be infusion number four.
I phoned the MS nurse today to get an update on the progress of sorting out a portacath for me. They phoned me back and said that it is all organised. They have spoken to the Doctor who will be putting it in and he will do that on the day of my infusion. Apparently, it will be done via X-ray, but I will be out and won't know it is happening - which is fine by me!! I don't know how long the procedure will take though.
Once the port is fitted, they will then do the infusion. It will be a long day, as they won't be doing the portacath until the afternoon, but that's OK. At least I know now!!
Now that it has been organised and everything is in place for it to happen, I am a little bit scared!! But scared in a good way. I know that this is the right thing for me and if I want to carry on with Tysabri, this is what I need to do that.

I have only had three infusions, so I don't know whether I should be feeling any different yet, or not. But I don't!
I have had quite a difficult week. Fatigue has hit me very hard and I have been struggling for any energy. The pain, as always, has been an issue. And the numbness and pain in my right hand and arm, don't seem to be going anywhere.
I spoke to the MS nurse about that, today. Martin had wondered whether the Tysabri could have been a reason why the numbness has happened, because it happened just ten days after the first infusion. I can see where he was coming from. But I believe that the relapse was going to happen anyway and it just coincided with the start of the Tysabri infusions. The nurse agrees with me too. It just backs up the fact that I need to be on something, like Tysabri, to help combat these relapses.

I have been feeling quite low and frustrated about everything lately. And then of course, I get upset that I am feeling like that, it is a vicious circle. I know it is easy to get caught in a downward spiral, so I am determined not to let that happen to me.
I am looking at the positives that I can hold on to.

I have my singing, of course! We are just starting to get things moving for the concert that we are putting on next year.
Don't worry you will hear all about it over time, but just to let you know, we are putting on a concert for two nights in June 2010.
The money we raise will be split between the MS Society, South Devon Branch and Rowcroft. That way we are hoping we will attract more people to come and see the show and therefore raise more funds for the charities.
The last two concerts we have done, we have raised £2500 altogether. So we are hoping to raise a good amount to share between these two worthwhile causes.
As well as doing it to raise money, it is something that I get a lot out of. The singing, of course, is something I love to do, so that always gives me a lift. But because we are organising it, there are lots of things to take care of. It is a project that means a lot to Martin and I and does a lot to keep my spirits high!
I'm really excited about it now and I wish we could start rehearsing tomorrow - patience Amelia!!


  1. That's Great Amelia!! I am excited for you to get the port. I know someone else that ended up having to get the port and it was the best thing for her too. I don't talk to her very often but if I get the chance I will and let you know. Have you asked anyone if the Tysabri is supposed to make you feel different. Or is it just a stronger way to protect more permanent damage from being done. I don't know much about it. Hpefully this next infusion will make you start feeling better. Just hang in there. And Congrats on the concert. I think that is wonderful and it gives you something to keep looking forward to and maybe you mind a little busy. Love ya!

  2. Hi Amelia,
    Came by to say hello, hope your next infusion goes well with the port.
    Hope the tsybri starts to have an effect.
    ps hope you like the Moonlight Award

  3. Oh my, I didn't know you needed a port to do Tysabri. Is this the only way to get the infusion? I always thought it was an IV infusion like a steroid infusion or can it be done that way as well. I hear of so many people in the US being on Tysabri but it's not so well known here in Canada.

    Hope all goes well!