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. 

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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!