Friday, 11 October 2013

Home tomorrow...

This post is dedicated to a fellow MS fighter - Gabriella Everts.

Life this week has been one of rest and recuperation.

Paul arrived on Friday 4th October and after 6 weeks apart it was such an amazing feeling to have him here.

Mum left Bangalore on Sat 5th Oct. I'm very proud of her. She travelled from the hotel to the airport and caught the plane all the way home. If you know my Mum you'll know exactly what I mean.

She's been amazing over the 6 weeks and I'll never be able to thank her enough. We had a laugh but I think by the end of our 3 weeks in isolation we were both desperate to get out. It sends you a little stir crazy!

We spent her birthday in style. Watching another crappy film on the new 'Romedy' channel.

We did it Mum!

Paul's been quite the therapist! Helping me shower (standing up!), massaging my legs and ankles. We have lots of plans for when we get home to use this treatment as a springboard to try and get back what I can.

We've spent the week just relaxing really. Been back to the hospital a few times for blood tests and to have my Hickman Line removed.

We went for a steak, which was actually really tasty. Visited a Bangalore shopping centre with some of our relaxation at the beautiful Leela Palace hotel (in the bar Mum...).

We had an amazing burger there today. Veeery tasty.

I've returned well to levels that Dr Amit would expect. I'm unbelieveably tired and could sleep a fair chunk of the day.

Improvements, if any, will take a while to materialise. 18 months to 2 years is not unusual, but for me if I have managed to just stop the disease that's enough for me.

The end of our trip comes at a time of profound sadness for us.

Gabriella was a fellow MS sufferer coming to India in the hope of blasting this totally crappy disease.

She was beautiful, strong and determined to see this through in the hope of a better future for her and her family. She walked a whole lot better than me!

A few days after getting her stem cells back she developed breathing problems and was consequently diagnosed with Septicaemia. She spent some time in ICU but sadly passed away last night.

We've spent some time with Rudi, her husband, and it's been so lovely hearing about how they met and what a wonderful life they had. Rudi has truly lost his soulmate.

Gabriella, sleep peacefully my friend. I know you're up there looking over Rudi and your family. It was a priviledge to meet you both.

You walked the walk and my last memory of you beaming with your thumbs up at my cell door will stay with me forever xxxx



Gabriella and Claire - Sept 2013

Thursday, 3 October 2013

And the tears came...

So it's very nearly over..

Last night I was let out of isolation and back on the ward.

The first thing we did when we got in to that room was throw open the window and take some really deep breaths. It felt so good to be free!

Over the last few days I've really noticed how down I was getting. Being confined to a 12x12 room for 21 days is no small thing. Even having internet access didn't help too much. More often than not I was too tired to type. All my energy going on coping in my cell and trying to keep these failing legs going as much as possible.

It's not been pretty!

My poor Mum having to things for me that she hasn't had to do since I was a baby.

I engrafted on Monday. This means that my baby stem cells had found the correct place and started to form my new immune system.

I think days +1 to +6  following my transplant were the absolute worst for me. Diarrhoea, vomiting, nausea and no appetite. Hardly any food passed my lips for 3 weeks. That's some achievement for me!

I always knew that it wasn't going to be an easy ride in BMT (bone marrow transplant). Others who have been before me were gracious enough to tell their stories and I took it all on board. I'm forever grateful for them putting up with my no doubt inane questions!

I'm going to beg to be allowed back to the Hotel today. Paul's here now! I'm waiting for him to get over here to the hospital. It's so good knowing he's close by. Despite not being here physically, emotionally he's supported me every step of the way. It's so hard when the other half of you is a ten hour flight away, but he's here now and recovery will be a lot better for it.

I've been quite focussed through this whole thing. Not really leaving much room for feeling emotional. On the day I left home I cried all the way to the airport. Already missing Paul and the kids so I made a conscious decision to see HSCT  a job to be done. Concentrate on it completely and not be side tracked.

But, there were a couple of moments where the tears came...

The first was following day 0. The day I got my stem cells back. It finally dawned on me that if this has worked the way it should I be MS free! How massive is that? The possibilities are endless. Who knows?

I'm not expecting to ever walk again, not in any meaningful way but if it's stopped that's amazing and I'll take that with both hands, thank you very much..

The other was yesterday, after Dr Amit had left after saying he's happy. I'm released!

On my own in the room, picture flashes up of the kids. One little tear, two little tears and now I'm actually crying a bloody river!

My Mum comes back. Those of you that know her will know that it doesn't take much for my Mum to start crying.

It's such an amazing feeling. We've done it! I'm missing the kids so much but home is really in sight.

I'm sitting there saying I've just had a Bone Marrow Transplant in India! How bloody crazy is that!

The relief is immense..

I'm so grateful to my Mum. She's been totally with me all the way and despite when I first mentioned wanting to have HSCT lots of people thinking it'd never be achieved, she's been there.

Thanks Mum!! She's off home tomorrow. I'll genuinely miss her. we've had a couple of close calls over the last 6 weeks being so 'with' each other, but basically we've been great.

I'm off, the nurses are in cracking the whip for me to get in the shower. Have to make myself pretty for Paul, haha. No chance of that at the moment. I still have hair on my head! Only a little but it's hanging on.

I'll have to see if I can 'do' something with it..