The Ugly, the Bad and the Good...

In my own order...

Sorry I've been a quiet for a while. Paul nailed it. I've become a bit insular.

I think it's because I've been concentrating on life after chemo which is a real roller coaster.

The Ugly I developed a rash that became really itchy. It started behind my ear and then spread across my face and the top half of my body. It became red and inflamed and only a few days of steroids could bring it under control.

The Bad The tiredness is all consuming and even worse than before I went to India. I could sleep most of the day.

I still have bouts of nausea and this permanent nasty taste in my mouth along with a kind of slimy feeling in it.

I'm definitely weaker than before I went. Things weren't good when I got home I couldn't get up the stairs to bed so slept downstairs on the sofa bed. I struggled to get out to the bathroom and even to use my level access shower by myself.

Paul had to take me in a wheelchair from the house to the car, I just couldn't walk that far, and it's not miles away!

The Good Before I went to India my feet looked a bit like this..

These aren't my feet but almost identical. The swelling would a times extend up to my knees and I'd have pitting oedema. If I pushed a finger in to my leg/foot it would leave a dent. I was seriously concerned the skin would split and I'd end up with ulcers. The skin was dry and cracked. On top of this my feet were blue, purple and mottled. Constantly freezing cold.

Now my feet are practically normal! I even managed to get a normal pair of boots on yesterday. They are still slightly swollen and at times a tinge of blue creeps in but they are so much better. Still have some swelling around my ankle and a bit on the top of my right foot but they look good!

This is my foot...

My muscle spasms are so much better. Some days I'm not having any at all. These were quite dangerous for me before. They could even throw me over at their strongest. This is another massive thing.

The most exciting thing is walking. I can now get up the stairs. As I said earlier I couldn't when I came back from India but now I can. Using two banisters and really slow, but doable.

I've even taken steps. Yesterday 5 and this morning 5 towards Paul, I turned around and walked another 5 steps back to the bed and sat down. I haven't done that for years.

My balance seems to be slightly better. I've managed to stand for a few seconds without falling over.

Paul's been brilliant. He massages my legs and helps me put them though their paces every morning. He pushes me to do things that I wouldn't have the guts to try to be honest i.e. walking. Encourages me to push a bit further. He's still working from home and cooking and cleaning.

He's much better looking in real life :)))

All in all I'm fine really. I'm pleased with my recovery. Although at 6 weeks post transplant I still have to be really careful. My immune system is still unable to deal with so many viruses and other infections.

I still need to be very careful around people and especially crowded places.

I'm still on anti-fungals and anti-virals and from today I start anti-biotics. Most of these I'm on for 6 months.

It's very early days and I'm only too aware that theses improvements could disappear, come back, disappear, come back before hopefully they return and stay for good. Patience is key.

I'm starting to see a neuro physio today, Tuesday, in Stratford (thats upon Avon not E15!!). I'm looking forward to her input. Should be good.

As I write this today I am 6 weeks and 4 days post transplant and things have gone backwards slightly in terms of taking steps. However, I'm cutting down the medicine I take for my spasms and they are still well under control!

Things are looking good!

So that's it for now. I'll update this blog every 4 weeks. I think that's a good time frame to notice improvements or regressions.

Lots of love, Claire..

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

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..







 

How the mighty have fallen....

Not that I ever seriously considered myself to be mighty, but...

Since my stem cells set me free from MS the road to home has been interesting to say the least.

The delayed effects of the chemo are not for the faint hearted so if that's you I'd stop reading now.

The Nurses on BMT are just too lovely for words. These women who know nothing about you will stroke your arm, rub your back and just be with you in every sense of the nursing word. Something that's missing in Nursing and Midwifery today. It's made me feel a little career sick to be honest. There's nothing like being 'with' a woman as a Midwife. Helping, supporting. A real priviledge.

A Nurse called Priya always drops in to say hello. They are always gowned up with facemasks on. All tiny but with the strength of ny man I'm sure.

Priya is so cute, I hope she won't find that condescending.

The first time I met her she was giving me some information, or directions and I said to her

" well Priya, you're the boss "

This sends her in to fits of giggles and an eternal rendition of no, you're the boss, no, you're the boss.

I'm asking Priya about her rota and she tells me that they work six days a week with not much by way of holidays. She's really hoping to get home this year for Diwali but doesn't feel confident. Priya comes from Tamil Nadu. One of the Indian states and rich in Hindu history.

At junior school, which was in Forest Gate, East London we learnt about all the different Asian religions. Mainly because such a high percentage of the population practised these.

My favourite was Diwali, so bright and colourful.

Diwali is popularly known as the "festival of lights", the most significant spiritual meaning behind it is "the awareness of the inner light". Central to Hindu philosophy is the belief that there is something beyond the physical body and mind which is pure, infinite, and eternal, called the Atman. The celebration of Diwali as the "victory of good over evil", check out the story of Rama and Sita, refers to the light of higher knowledge dispelling all ignorance, the ignorance that masks one's true nature, not as the body, but as the unchanging, infinite and transcendent reality. With this awakening comes compassion and the awareness of the oneness of all things. Diwali is the celebration of this Inner Light.

This really strikes home with me. I desperately want to be a more 'spiritual' person. Finding my inner light and letting it shine. 

This journey has certainly kick started the process. I've learnt so much already.

For me, life since stem cells has been not too bad really. Lots of vomiting, diarrhoea which led to me having to wear pads because I couldn't make it to the loo in time. Go on, laugh. I would!! How the mighty have fallen.

But the most exciting thing was passing out again doing the 'mini shake'. This happened while on the toilet. Blood pressure dropped to 70/40. Took me a while to come round.

No one here seems to be too concerned so consequently neither am I. My poor mum though. When I did come round, my Mum slapping my cheeks I could hear her crying. 

A bit later she says " if you do that again we're on the next plane out of here. I can't handle that again. I don't care whether you've engrafted or not".

I think that part of the problem is that my Hb is 8.4 from a level of 14.0 when I came in. My platelets are also low at 6000. These are expected and  side effect of the treatment.

Yesterday my White Blood Cells hit 10. A sure sign that my bone marrow is now the barren wasteland I've been visualising.

And today already, my White Blood Cells have gone back up to 50. Dr Amit reckons that they will continue to increase now until I reach the magic number of 500 which is engraftment. Hopefully by Monday next week.

Another sign that my magical garden visualisation is also working.

So now it's time to just sit and wait for the numbers.

Other news...

My baby's coming out next week! Yep, Paul will be here in a week and I can't wait to see him. I can't wait to share some of this journey with him, and then the journey home to my babies...

This is it!

This is it!

Today is the day I get my stem cells back.

My stem cells will navigate their way to where they need to be and begin to build a new immune system. Hopefully, one that doesn't remember MS.

So, how did we get here....

On Weds night we were admitted to have a Hickman Line placed early Thursday morning.

At almost midnight an Anaesthetist came in to see me asking can you sign the consent form for a general if needed. I was under the impression that this was a very simple procedure with a local.

He replies that sometimes it's awkward and a GA may be necessary to proceed.

OK, I sign the form.

7.30am Thursday morning I'm taken down for my procedure. In to a theatre with loads of staff. Silver, gleaming. I wasn't expecting any of this. The last one was done behind a curtain on the ward.

So they placed me on the theatre table and connected me to all sorts.

In goes the local and as it does I get this shock down my left arm. He'd hit a nerve! It bloody hurt..

I don't say anything because I just want to get out of there ASAP.
The Hickman Line goes in like a dream but my arm is getting progressively more numb.

Sods law, my arms are the only part of me that still work. My left arm flopping about like jelly on a plate.

Back in recovery the Dr comes to see me. So, it was a success and very easy in your case.

Not completely, you shot local straight in to a nerve and now my arms floppy. I demonstrate this by trying to grab it then realising it's hanging over the edge of the bed.

Ah, don't worry he says. The local will wear off. He was right. It took a few hours but it came back to me. Thankfully...

We move in to the Bone Marrow Transplant room that evening. Ready to start chemo on Friday 13th, can you believe?

Chemo starts and the first day is manageable but days 2,3,4 and 5 have me feeling as sick as a dog. Like morning sickness but worse. Smells, tastes. Everything making my stomach turn.

Not a very nice experience but no pain, no gain as the famous saying goes.

On Weds, my last chemo day I had the one that makes up the M part of the BEAM + ATG protocol. Melphalan. For this one I had to eat ice for 30 mins before, during the 30 min infusion and for 30 min after. This is because the drug can cause blisters on the mucous lining of your mouth and GI tract, so I'm told.

After, I had ATG. For this they wanted to give me a test dose first, it can cause rashes etc in people.

In me it caused a light head, a fainting episode and a bit of jerking thrown in for good measure. I came round to my mum frantically shaking my shoulders. I was blissfully unaware of the fuss I'd caused. The ATG went in no problems, at a much slower rate.

Thursday was a wash out day. Loads of fluids to try and get rid of excess chemo in my body.

I've learnt that I have a bladder the size of a balloon. Even being on a fluid drip all night long doesn't  bother me. I'll sleep right through til the next morning!

Which brings us to today, my new birthday! Friday 20th September. The day my stem cells set me up with a new immune system that will be MS free.

The next week will have pleasures in store. Fevers, vomiting, diarrhoea as my old immune system is completely eradicated. Blood work numbers will drop and plateau.

Then, like a Phoenix rising from the flames my new immune system will show signs of flourishing.

Hope it happens soon because I want to go home!

UPDATE!!!  My stem cells are safely back inside me. Lots of positive thoughts please for a fast engraftment (when the new immune system begins)...

Summary of where Claire is in her Treatment Stage

Claire is undergoing her Chemotherapy stage now and is in isolation as this is the stage where the Immune system will be depleted and finally terminated.

It appears a gruelling and particularly difficult stage with very deep nausea, muscle spasms and chronic tiredness.

Claire, as most of you who know her, is a fighter and is certainly maintaining her fight with grit and determination.

Sue, Claire's mum , is in isolation with her and is a fantastic care giver and mum and is a real tower of strength for Claire.

Tomorrow (Monday 16th September) is what is termed day -4 , the countdown is on to zero for when the immune system will be confirmed as finally terminated.

Blood tests will be conducted tomorrow to check on the scale of depletion and progress toward termination of the Immune system.

I will be keeping you updated while Claire is dealing with the challenges of the treatment.

Paul, on behalf of Claire.

A rite of passage..

Since leaving the hospital on Saturday I've really been captive in the hotel again. But, compared to being in that room it feels like a few days on the coast!

We've met a lovely lady from Australia who's here with her husband. She's making her way through her own HSCT journey but it's great to compare notes.

It's nice to be able to disseminate some information. It's becoming clear that the staff here at Manipal are learning all the time. If things go to plan I could turn this whole thing round in 7 weeks! I may be getting ahead of myself a bit here but that's what I'm aiming for.

The weather in Bangalore is damp and grey in the main. You could even call it chilly last night. It's just like being at home.

We've been  having lessons on Hindu Gods from the hotel staff. I particularly like Lord Krishna.

This God had circa 16000 wives. You'd have to be a God to get round that lot!

Most men I know would say one's enough!

Local people have been getting excited about the Hindu festival of Ganesh Chaturthi. These statues are all over the place at the minute. I so wish I could get out and about and walk among it all. Such a colourful religion. There were real celebrations in Bangalore yesterday.

Raja, our taxi driver has even had the audacity to go on a mini pilgrimage to wash in the water of a special temple. We're lost without him. He worships at this temple because it is related to an important God. He said he'd also pray for me going in to isolation. This is a rite of passage for Raja, something that leads to purification of the soul.

I've still got that sick feeling..

You know that anxious one you get when you know some things are coming up and you're not quite sure how you are going to handle them.

My gorgeous significant other Paul has put together some visualization techniques for me to calm myself down. I'm working hard on them.

All these religious teachings had me thinking about my own rites of passage. Not in terms of purifying my soul although may be that wouldn't be a bad thing...

My rite of passage to motherhood was 4o weeks of pregnancy; my rite of passage to adulthood was turning 18 and going in to a pub!

My rite of passage to HSCT is..... GOING BALD!

It's not the best picture but I hope you get the idea. Mum was worried I'd find it difficult but it's strangely liberating. It's my rite of passage. It means that I'm moving on and isolation is a stones throw away.

The plan is for the new central line on Thursday and in to isolation on Friday to begin the real arse kicking chemo..

It's almost time to say sayonara MS. You're about to be nuked in to oblivion. You're disappearing forever but my hair will grow back.

I fancy curls this time....