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!!!!