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....

Glad that's over...

It's been a stressful few days..

I was admitted to hospital Weds afternoon for the Central Line insertion.

This was cancelled until Thursday morning which I was quite happy with. I didn't feel up to much. Something just wasn't 'right'.

Thursday morning at 5am the lovely Chandra came crashing through the door.

'Bath bath!'

I cannot believe I allowed this to happen. I blame not feeling too well and suffering from a bit of 'cog fog'. A condition other MS sufferers may know well. It feels like your head is in cotton wool. The world is going on around you but you're in another dimension.

It may have been due to language barrier but I let this woman push me in to the shower. My protests to her were met with a massive smile and water.

Even Mums protests fell on deaf ears. Chandra is a force to be reckoned with!

Once I was back on the bed I turned to hysterical laughter. I felt violated!!

My reason for feeling off became clear when I developed a touch of 'Delhi Belly'. Sorry, but there it is..

The Drs were fast on top of this with antibiotics and other medications but it wasn't good.

I had to try and keep it together so to speak as I was wheeled up to 8th floor for my Central Line insertion.

This went without a hitch. Apparently I'm a strong woman?

Wheeled back downstairs to 6th floor to be almost immediately hooked up to the Apheresis Machine.

This little number is sucking out blood through my new central line, taking out the bit they need for the stem cells and putting the leftover back.

You can imagine mine and Mums face when they wheeled in this machine that looked like it belonged on the Antiques Roadshow. Sounding like it was on bad shopping trolley wheels.

But we needn't have worried. This little machine and the lovely team that operated it managed to extract 11 Million stem cells from me on the first day. We don't have the 2nd day numbers yet so we are well over our 2 Million minimum.

Here are the little blighters collecting in the bag.

Friday I woke up to another crashing through the door of Chandra where she was definitely told 'NO!'

Another collection day but because the first day was so good it was only a 2 hr collection. I could have come back to the hotel at that point but because of the toilet issue they wanted me to stay another night. Sad face..

Saturday was another 'cog fog' day, bit lost really.

Being in hospital has been a real emotional roller coaster and it's made me think of things/look at things from a different perspective. Mainly my life, my relationships and how much MS defines me as a person.

It's funny what extended periods away does; I'm missing home so unbelieveably much. I'm enjoying a bit of quiet contemplation and being alone with my own thoughts.

Mums now known as Nurse Ratchet. Have a look at this..

The only way to move the bed is to crank it up. I'm sure sometimes she'd like to throw it at me!

So, next I'm for blood tests on Tuesday and if my bloods have recovered enough I'm going in for my new central line to administer the chemo on Weds ready to go in to the BMT isolation on Thursday.

It's all happening now! Can't believe we've only been here 2 weeks and this is where we are.

Mum and Raja went shopping today to get some supplies to go in with. In true Bangalore style the supermarket was no good for me.

One last picture. Imagine me, lonely white female sat in a wheelchair, enjoying a bit of people watching. Here's my view..

Going in to isolation is going to be a challenge. I feel it already. But as mum says it's the crest of the hill and all roads point to home from then on. Can't wait!!

Humbled....

I know I said I wouldn't blog today but I had to share this..

I know it's not a great picture so I've made it as big as I can.

From towels, the fella that does our room has made a vase and put flowers in it! Then he has made a pretty border.

I'm sure he does this in all rooms, but it's brings in to question tipping and what you leave. I hope he does this because he feels he's being treated fairly.

We've discussed this with so many people

Every time the room gets done we give this man 200 INR which is about a £2.00. Peanuts.

But, when you know that the average wage here at the hotel is £100.00 a month its not a bad number.

We watch these people with nails holding their shoes together and pins fastening their clothes.

We have a taxi driver Raja who would appear to be waiting outside for us. He is so lovely and when we come back from the hospital he jumps out of his car to help push me up the ramp. But, you feel so bad about him being there that we pay him well when we use him.

Lakhmi, I hope I've spelled it right? The no nonsense, take no prisoners auxiliary lady who pushed my wheelchair today back from the Hospital right to the hotel room, dragging people to help as we go. I'll have to get a picture of that I think. Is £2.00 too much for that? I don't think so.

It's a really difficult thing to gauge and I hope the amazing people easing us through this journey at this end feel that we've appreciated them and treated them well. I hope they don't forget me because they'll be special to us forever.

There'll be more medical tourists all the time as it seems Manipal is building quite a reputation worldwide and it deserves it!

So I have a time for being admitted for the jugular tappng and it's 5pm here, 1230pm your end.

I'll try and get a FB message out to let you know how it went.

Catch up Friday when hopefully all my little stem cells will be tucked up in the freezer!

Transcendental moments in time...

So what's been occurring...

Saturday we went to The Leela Palace Hotel in Bangalore. Beautiful hotel and amazing gardens.

He'll kill me but, Dad had a blast...

Shall I take it off?? Naaaah....

Sunday we shared our breakfast table with a fella from Nigeria, an attorney who moonlights as a lay preacher.

Lovely man, so interesting to listen to. After sharing breakfast we shared a prayer where he asked God to look after us and to be honest, it felt really nice. My first transcendental moment, it's never too late to appreciate the power of prayer, whoever you pray to. Just as long as you open your mind a bit.

After that we went to Bangalores Botanical Gardens which were built by the British Raj. I'm starting to wonder if the Indians should be bearing a certain amount of ill will, but they don't.

Saw some Monkeys!

I wish wish wish I could have got a picture of this...

My parents sitting on a bench taking in the view.

An Indian lady wearing the most beautiful Sari comes up to the bench and starts edging my Mum over.

So we think that she must want a picture RIGHT THERE and my mum moves over. The womans husband holds up his camera and she strikes a pose.

The Husband gestures again, and the woman stands up and plonks herself in between my parents, Husband and Wife are all smiles and he takes the photo! We're all laughing now! There clearly aren't that many white people visiting Bangalore at the moment! My second transcendental moment, humour has no language barrier. It's something shared and for that moment is a connection between us as humans.

Back at the Hotel we have dinner where we chat to a family from Bahrain, not Oman as we thought. Lovely people again, we talked much about their country. They speak perfect English and as they are talking I can't get the Frys Turkish Delight advert out of my head. Go figure..

They NEVER have rain there so it was so funny to see them run out on to the terrace and dance in the rain when the heavens opened.

The TV choice that night in the restaurant was Indias Junior Pop Idol!

There was a point where the kids were doing their thing and the Mums were crying. Tonight I've just Skyped my youngest and previously my other three.

My third transcendental moment, a Mum is a Mum and a Dad is Dad. Doesn't matter where you are and what language you speak, that completely all consuming love for your babies transcendendts absolutely everything else.

So my new motto in Bangalore is get in, get done, get out, get home. I need to be home with my babies!

Even the beautiful towel sculptures that the chamber staff make couldn't keep me here..

As for HSCT...

Today I saw Dr Amit, a man who I am sure has looks that cover up his older years. He looks so young!

I had to have blood tests to see if the injections are working. He was looking for some elevated white blood cell numbers and the verdict is YES! It's working!

So now I am booked in for my Central Venous Catheter, a nice big tube in my jugular on Weds to have my stem cells harvested Thurs and Fri.

I'm really hoping that after what will be a successful stem cell collection he won't make me hang around for too long before I go in for the chemo that is going to boot this crappy MS from my body. But, I hear he likes to give you a rest after stem cell collection.

I'll be an inpatient from Weds afternoon til Friday. I'm hoping I can arrange internet access so we can stay in touch.

Take care guys and thank you so much for being around!

Treading my own path...

It's been a few days so there is quite a bit to say.

Tuesday at 11 a.m I went for an MRI scan of my brain and spine.  I was really impressed with the equipment, it was very 'state of the art'.  Lying on what felt like a plank for two hours meant that my back muscles kept going into spasm, which meant that I moved a few times so they had to re-do some of the scans. The scan was stopped for emergency patients which would have happened in an NHS hospital as well so I am not complaining. However it made for a very painful experience and boy was I glad when it was over...

On the upside I got an MRI of brain and spine with and without contrast, the contrast being something which shows new inflammation.  All for the grand total of £245.00 which would I am pretty sure have cost a lot more privately at home. 

. 

After I managed to escape what felt like a torture chamber we went back to the hotel to grab something to eat before being admitted to the hospital.

We were admitted to the 6th floor of the hospital which is obviously brand new and very nice, ready to commence my first day of chemotherapy.

So this isn't the hard stuff you understand, the purpose of these two days of chemo is to prepare my body for the Neupogen injections, I don't completely understand how this works but the Neupogen is the drug used to stimulate stem cell production.  How ever it works in your body it leaves you susceptible for worsening MS symptoms.  So these two days of chemo are to counteract the effects.

Once the cannula was inserted in my hand up went the first saline drip.  The saline continued throughout the night with the obvious effect, I was up and down to the loo constantly.  At one point mum and I were laughing so much she almost fell off her wooden bench they had given her to sleep on and we were expecting the nurse to come in and tell us to shut up !!!!  We eventually dozed off at 4 ish in the morning and BANG in came the nurse with yet another bottle of saline so up I got and I toddled off to the loo with mum walking behind carrying my drip stand a sight to behold I promise ....

We left the hospital at about 8 p.m Wednesday evening armed with more drugs that you would find in a drugs den, these included injections, steroids and anti-sickness tablets.

Thursday morning it all began, with rounds of injections and taking various medications.  Initially didn't feel to much at all by way offside effects but after my shot this morning, started to feel some lower back pain and aches in my pelvis but worst of all at the moment is the feeling of sickness which I think is probably down to the steroids more than anything else.

However, there is always an upside to everything and the upside to this is that due to what I think is the steroids the jumbo sausages that used to be my toes have now been reduced to chipolata's and I actually have ankles at the moment. If you had seen my poor old feet before that looked like they belonged on a corpse they were blue, mottled and like ice, now they are pink, prettily puffy and sooooo cute.

So this morning we had coffee at the Urban Café trust me this sounds much grander than it is (it's the coffee shop in the foyer) but their lattes are to die for and the staff are brilliant.

We then ventured out with Raja onto the mean streets of Bangalore and when I say mean well !! In the midst of what seemed like a triple rush hour with hundreds' of cars, bikes, motor cycles and little three wheeled phut phuts, hooting their horns constantly with no apparent road rules or road markings and every man for himself, there sat in the road painting black and white lines on the kerb were three little lads no older than 10 years. So sad, so dangerous it was heart breaking. Just imagine 3 children sat in the road painting these stripes.

Had a quick look round a sari shop but couldn't find any to fit me or mum ha ha.  Would like to have had a look around Bangalore on one of our few free days but sadly the city does not accommodate wheelchair users in fact it barely accommodates pedestrians.

So in terms of treatment the next step is an appointment with Dr Amit on Monday at 10 a.m probably for blood test to check the injections are doing their job, we will probably then discuss stem cell collection and having the central venous catheter put into my neck, a procedure I am hoping I will be unconscious during but I have a sneaky suspicion that I will be fully awake.  If all goes to plan the stem cell collection could happen next Friday fingers crossed.

So, that's me, treading my own path through what is just as mentally challenging as physically. Thanks for all your messages of support, they all still mean so much and they make me feel closer to home and unless anything amazing happens in the next few days I will return to the page after my next hospital visit to update.

Take care xxx

Bangalore nights and chemo days..

Where to start...

We went out last night. We asked Raja the taxi driver to take us somewhere for dinner. So he picked us up in his little car, slinging my wheelchair on the roof and off we went.

Now, the hotel is down a side street. I was still really tired yesterday so didn't want to go too far. It was very quiet and so we were convinced that Bangalore was closed for Sunday.

How wrong we were..

Bangalore is a hustling bustling city full of Western shops and sparkling lights. We drove past a Costa and a Card Factory! Krispy Kreme donuts and all the usuals like Mc Donalds and Kentucky.

I know people had told me that Bangalore was a modern city but I wasn't expecting a Card Factory..

8pm on a Sunday night it was alive. People were out shopping in the copious amounts of shops selling their goods and youngsters were milling around chatting.

The cars are still bumper to bumper and drivers are tooting their horns.

I'd love to be able to walk around but the pavements look as though they'd be at home in war torn Beirut and Bangalore makes no concessions for disabled people.

So we arrive at this building and Raja points "up there".

My face must have visibly dropped because he quickly tells me that there's a lift.

Yeah right! After you've gone up a very steep set of 8 steps.

To my horror they bring out some wooden hand made contraption that turns the steps in to a very steep slope. Very steep...

I'm looking at my parents with sheer terror on my face because I know a million people are going to come swarming in to try and get me up this make shift ramp.

They're shouting at each other and gesturing and I want to curl up and die...

But, they do it and I make it in to the lift in one piece and wheel in to  - a mexican restaurant that sells Fish and Chips. Only in Bangalore..

So Monday I went back to the hospital to see their pulmonary Dr to make sure my lungs are up to the Bone Marrow Transplant.

We all march in and take a seat.

The Dr looks at me, a young fella and says,

" So, you're here to see if you are fit enough to have surgery for your Mitral Stenosis"

Err, no. I'm not and I ask if there is a problem with my echo or ECG. My heart sinks and I'm a bit confused. I'm not thinking, shit! I've got a problem with my heart, I'm calculating and wondering how much this is all going to cost!

He says let me check all your notes and he is surprised the Cardiologist hasn't told me. Not as surprised as me!

He looks a bit perplexed that he is left to deliver such devastating news.

He looks at the notes and says,

" I'm so sorry, I saw MS and thought it meant Mitral Stenosis"

Laugh? It was so funny, bless him!

So the upshot is, I'm fit enough to start the regime!!

On Tues 27th August I'm going for an MRI at 11 of brain and spine. I'm glad of this because in the UK they'll only do brain for some reason.

At 1pm I'm being admitted overnight for my first 2 doses of chemo. I think I will then start on the injections that stimulate the production of stem cells...

I'll update once I'm out of hospital tomorrow.

After surgery for my Mitral Stenosis!!!

I'm here!!!!

When we got off the plane at 430am Sat morning I expected to be hit by a humid heat but instead it was cold! They were saying it was 20 degrees but I needed a jumper. We were met by a taxi driver and we got our first taste of Indian road sense. Scary! There are just cars and mopeds coming at you from all directions. The law seems to be that there is no law and they don't even take any notice of traffic lights or roundabouts where they are in place.

Everything went well today. We met Dr Amit who was lovely. I can see he is going to be a real calming influence through this process. Such a gentle man. I feel very safe in his care.

I went for a battery of tests including ecg, echo, consultation with cardiologist, loads of bloods and a chest xray. These were so unbelieveably cheap. 250 rupees for a chest xray = 2.50. I know, that's what I thought. Bloodworks the most expensive thing at 9600 rupees, roughly 96.00. It was cheaper for a consultation with the cardiologist! This was all happening only 8 hrs after getting to the hotel. No hanging about .Waiting for official results but all was fine. 

I have one more test and that's it. Pulmonary exam Monday at 9.15. If everything's alright I could start the first part of the treatment on Tues!!

The care's amazing and because I'm a private paying patient I go straight to the front of all queues. This doesn't sit comfortably with me sometimes. Especially when there are women with crying children sat there, but it's the way it is.

As mentioned by others, Geetha is quite something. She seems to lead the International Patient office and appears to have all departments of the hospital on speed dial. What this woman doesn't know or do is probably not much. She directs the porter to what you need and he whizzes you through the hospital using my wheelchair as if it's a car on one of Bangalores roads. A few times I found myself grabbing on to the wheels trying to stop him from taking out somebodys legs. He's smiling all the time while doing this and the people he almost annihilates don't seem too concerned either.

All staff are very special . Nothing is too much trouble and I felt really safe from the word go. You could argue that this is because you are paying but I reckon they'd be just as amiable if you weren't.

The hotel staff are equally as attentive. Food here at the hotel is so cheap. You have to keep looking and checking to make sure you've done the conversion right. We just had a meal for 3 with starters and main courses for £13.00! 

Life in Bangalore is something else. It seems so busy. the cars race around with almost no regard to whats going on around them. Trying to get across the road in a wheelchair really is taking your life in your hands. 

The cows really do roam freely and women wear some of the most beautiful saris. The state of the roads and the unreliable electric supply is something that you just have to accept, it's part of the milieu.

I'm so happy to be here and to have this opportunity. I'm also happy to have jumped straight in with the testing. I can't believe that by Tues I could be starting the regime!

Time to 'do one' MS!

Do I think I made the right decision coming to Bangalore? Hell yes!!!

The only downside is there are no twin rooms so I have to share a double bed with my mum. I've just watched her reach over and nick my pillow and shove her body to my side of the bed. Time to hoof her over...

We've got a day off tomorrow before we're back in the hospital on Mon. 

Catch up with you shortly... xx

Setting expectations......

You've all been amazing!

I'll never be able to thank you enough for giving me this opportunity.

By the end of next week I'll be able to give you an updated amount but I know it's going to be impressive, and I'll be forever grateful.

We're flying out to Bangalore at 2pm on the 23rd August to be seen by the now famous Dr Amit at the beginning of the following week.

I have to go through a battery of tests to make sure that I am fit enough to go through the procedure. Heart, lungs, kidney function and a dental examination amongst others I'm sure. At first I was slightly confused about the dental one but it's been explained to me well.

Any infection during the stage when you have NO immune system could potentially be a serious complication and so all the pretesting is geared towards making sure that there isn't anything lurking that could cause a problem.

It's not a pretty procedure. I hope my mum knows what she's in for while we're in isolation.

Diarrhoea and vomiting for a start....

But, eventually once I get my stem cells back, a day named your new birthday by HSCTers, I'll have a brand new immune system with hopefully no memory of MS.

The time when your harvested stem cells begin to create a new immune system is called engraftment and this is what I'm aiming for. A swift and relatively discomfort free journey through to my new baby immune system that I'll nurture carefully through to a fully functioning one, MS free!!!

For those that are interested, here is a guide to HSCT but please note I am NOT having Total Body Irradiation...

http://www.lymphomas.org.uk/sites/default/files/pdfs/Autologous%20stem%20cell%20transplant%20booklet.pdf

So, setting expectations...

Please don't think that when I get home I'm going to be ready to apply for the London Marathon. The recovery from the chemo could take a year or so and the chances are that I'll feel very weak and my symptoms could worsen before they get better, if that happens at all.

My reason for doing this is to primarily stop my MS from getting any worse and I have an 80% chance of that happening. If improvements in my disabilities happen then that's more than a bonus.

My way of getting through this is to hope for the bare minimum - for things to stop and not worry about the other improvements.

I'm calling myself a positive realist. Hopeful, but not naïve.

I won't be able to say that this has or hasn't worked for me for another 18 months, even 2 years! Recovery can be slow if at all so please be patient with me .

I'll be updating this blog and FB page regularly while I'm away so please stay in touch and send messages. I think spending 3-4 weeks alone with my mum in isolation could make us or break us and we could do with some other human interaction!

Seriously, I'm so grateful she's coming with me. Who else is better to offer some TLC than your mum? And, I'll be able to relax knowing that Paul is at home with the kids.

Simples!

Never mind....

                                                     Petes Fundrazr Page - please check it out!!


I feel like I should be saying,

"Forgive me Father, for it's been two months since my last confession".

However, I'll just say I'm so sorry that I'm so crap at this!

Every time I begin to write my brain turns to blancmange and I just want to shut my eyes and sleep.

However, there is lots to say...

It's been a bittersweet couple of days.

The bitter part being that today I can call myself a midwife no more. That's it. All over.

I knew that it was coming. I couldn't do the job anymore and wasn't the kind of midwife I wanted to be. Not for a while really. I'd been sobbing on and off all day. The 'hearing' consisted of some maternity managers and HR people. As lovely as everybody was there was no softening what was happening. Even though I knew I was there for my contract to be terminated, when somebody kindly asked if there was anything else management could have done for me the tears came, and they came and they came.

Now, I have in the past been accused of being hard faced at times. I certainly wouldn't be taking crap from anybody and I still don't cry easily but since gaining disability I'm so grateful. Grateful for help, for acts of kindness and support.

That solitary sentence, conveyed with a look of compassion got me good and proper. So I cried all the way home and then some. In fact, I was actually enjoying a good old cry, only just stopping short of a pitiful wail.

So that's it. Sayonara, arrivederci, adieu midwifery - it was real, and MS, you're a fecker!

The sweet is all of the amazing people who are fundraising for my treatment in India.

Everyday I wait for my brothers message on FB letting us know that he's made it through another run without his knee going or his septic toe bursting - lovely. He's doing amazingly well. I have to say that he's taking a risk here because only a slight improvement for me would mean that I'm back to dancing him under the table!! I'm so proud and grateful to you Pete, the stars were aligned the day I landed up with you as a brother.

My friend Nicky ran for a whole 24 hours, overnight! She covered a mahoosive 80 miles and raised a load of money for me. I think she may even come to India for a week with our friend Karen. Could have been the wine talking but I haven't forgotten ladies!

Next week we have the charity fundraising dinner at the Vale Golf Club meaning I have to put on a posh dress! Organised by my lovely friend Jenny Powell, my partner Paul and other friends. Looking forward to it, it'll be a great night.

Wendy Wood and Alex Pickard have organised what can only be described as an extravaganza. A charity night with disco/karaoke, auction and raffle. Face painting for kids and so much more.

Anthony Parkin is doing a skydive which is amazing. Will be sharing his info so please look out.

My sister Emma is going to be shaving her head with me shaving the first strip (mwahahaha!) and her friend Amy Fleckney is kindly doing a skydive. Thanks Amy!!

I reckon I'm on track for August in Bangalore and it's thanks to all of you.

So it's 4.30am and I can't sleep at all. My heads buzzing. I'm enjoying some music and my melancholy mood.

Do you know what I'm listening to??

Sleep don't visit, so I choke on sun

And the days blur into one

And the backs of my eyes hum with things I've never done'

Answers on a postcard!!

A lament, almost.....

A very poignant parcel arrived for me this week. Midwives up and down the UK were probably receiving the same thing.

It was an attempt by Pregnacare via the Royal College of Midwives to get Midwives to promote their products and along with loads of promotional leaflet bumpf was a very useful pair of scissors!

A nice tourniquet is always a more welcome freebie Pregnacare. Those disposable things they are making us use now are awful. Next time may be...

It served as another reminder of a career by the wayside. I'm surprised at how upset it made me really.

On a daily basis I'm quite at peace with the decisions I've had to make regarding work. There is no way I could carry on. It was dangerous quite frankly.

But, this little parcel sent me on a journey of nostalgia.

Being on call is just one of those things that you have to accept when you work in community. Going to bed with the bleep beside you hoping and praying that it doesn't go off because you're tired. Then waking every hour wondering if you've missed a bleep or whether you brought it to bed in the first place...

When it does go off it's much better to be called to a planned home birth. It's all planned out and you and the woman know how things are going to go (hopefully!). When the times right you call the second midwife on call and you both help to deliver a life in to the world, perfect!

However, things can be different when you get called to an emergency. You have no idea what you are going to until you get there. Thankfully there is always an ambulance crew there too. They get to blue light while we have to stick to the speed limit so they are always there first.

It brought to mind one call I went to that I always remember very fondly...

Bleep goes off so I ring ambulance control. Go to this address, ambulance on way.

The village I had to go to had no lighting so I was grateful that the ambulance was there, blue lights guiding me in. The adrenaline is racing for me as I have no idea what's going to greet me as I walk through the door.

A paramedic lets me in and I get upstairs. There I find a woman in the full swing of labour and I can tell just by looking at her that she's fine. An unexpected quick labour but all is well.

After all the necessary checks I examine her and she is very close to delivery. There is no time to go to hospital and this an unplanned homebirth to be.

The paramedics stay until the placenta is delivered to make sure there is no risk of bleeding but once this is confirmed it's just me, the woman, her husband and their new baby.

When I left, all three were snuggled up in bed with mum and baby breastfeeding.

I remember driving home, it was summer and at 4am the sun was just showing it's face. I got home, had a shower and crawled in to bed for a couple of hours before the kids got up, feeling very content about a good nights work. My partner stirs and says that he's really impressed and proud of what I do. Ahh....

I miss this, I miss meeting women in clinic with their second or third pregnancies. Spending time at home with them and helping them through the baby blues. Just being there..

Having HSCT isn't going to get me my career back but I'm hoping that in the future I can volunteer somewhere. I don't know, but what I have found out about myself is that there is an innate need for me to 'care' for people in some way. Even just lend a friendly ear and MS is making it impossible for me to even be a decent friend.

So once again, I'm very grateful to everybody for every little bit of help I receive.

And midwives, whether you are based in a unit or in community, never forget that you make such a difference to women everyday you work and that your words make for a good or bad experience for that family.

I know it's hard and you are run ragged with the extra pressure and paperwork consistently raining down on you from the powers that be, but you know what? I'd give anything to be in your shoes...

Still, lifes a bitch. I have to tread a new path now. I have no idea where I'm going after India so I hope that the destination is as exciting as my journey through HSCT is going to be!

Speak soon xxxx

Facebook Group

Errr....

Just that really, errr...

My mind is totally mush at the minute.

I've been without a scooter - disaster!

One of the tyres blew so Lilly and I had to limp on it to school as getting off and walking isn't an option. You wouldn't believe how difficult it is to get a scooter tyre. The local disability shop reckon it was an unusual size. This I believe was a load of rubbish, I mean it's not as if it's square. I managed to get one before they did but then we couldn't get the wheel off blah blah blah.

There is so much to do but the minute I sit down to concentrate on anything my mind just goes blank. People in the MS business call it cog fog and it's a PROPER nightmare. I can sit staring in to space for any amount of time, completely inanimate, simply reminding myself to look at the clock every now and then so I don't miss Lilly coming out of school.

My newest symptom now being welcomed to the family, back spasms.

Pain like you wouldn't believe and only on the left side of my back at the moment until the right side starts to feel left out. Over the last couple of nights they have been horrific and no amount of medication help. I just have to go to bed to lie flat. It offers slight relief.

Being on my feet and moving in anyway leads to a spasm and looking like I've got a poker you know where.

I'm being distracted by my oldest son as he's applying to join the Royal Navy. We are going through every sample test paper we can find, trying to get his speed up as the individual sections are timed. I hope it goes well, I can't wait to see him doing so many amazing things.

Anyhow, the fundraising is good. So many people getting involved up and down the country. I'm forever grateful.

There's a page on my website www.clairetoindia.co.uk which needs updating again now explaning all.

For your viewing pleasure, here's Carmel Turner talking about her HSCT procedure..

http://www.youtube.com/watch?v=FIIukhf4v3w

 Until next time xx

Humiliation....

Fundrazr - please click!!!

I haven't written a blog post for a while because I haven't been well to be honest.

It's Sunday the 17th February and I've got a bit of a sore throat. No major thing at all so I went to bed dosed up on the usual amount of Baclofen to try to reduce the night time spasms.

At 2am I came to feeling that I had a temperature, you know how you feel cold but hot and it hurts when you touch your skin.

I know what this means...

I try to move and nothing, absolutely nothing. My body from the ribs down feels as if it has been screwed to the bed. After the pain of continuous spasms begins to get to me I look over at my other half who is sleeping nicely. I really don't want to wake anybody up. So I keep trying to move. I can't even pull myself over on to my side and the pain is getting worse.

So I lay still and start to cry and yes, it's all about self pity. As the racked silent sobs became more intense (I'm painting a picture here) my thoughts turn to what happens if this is permanent? Thank God for the kids or a trip to Dignitas would be on the cards (dramatic enough?).

Paul becomes aware that I'm having a meltdown and asks whats wrong and I say - please help me. I tell him I have a temperature and as we've been through this a few times before he goes to get me some paracetamol and more Baclofen. It's a real knack taking tablets when you are flat on your back.

Once I've taken them he proceeds to massage all the solid muscles until my knees are loose enough to bend, but he can only do this by pushing them from behind and forcing the issue. 

Feeling slightly better I tried to get back to sleep as did he, but not for long. I was awake again at about 4.30am and decided to just suffer until he got up at 6am.

We went through the same procedure again and eventually he got me downstairs by me sliding on my backside. A sight to behold.

I settled in to a chair and there I stayed for 3 days.

Humiliation central!

I have a commode that I use at times like this where I really can't use my legs. The only way I could get on it was for it to be brought right in front of me. One of the older kids would pull me up and another would pull my feet until I was in the right position. Then they would go out and my youngest would stay with me pulling down my trousers. This is wrong on so many levels. Thank God it was half term and they were all around.

I kept apologising to them for being such a crap Mum but they won't hear any of it. They're so lovely.

I hope you weren't eating your dinner!

Thankfully my sister took Lilly for a couple of days, her Grandad having to come up all the way from London to get her, my Mum and sister then came for a bit. Don't know what I'd have done without them.

I'm still not great and the fatigue is sky high.

I was going to put a picture of my commode on here but the kids weren't impressed. I really can't see why..

Get me to India ASAP!!!!