Monday, 11 November 2013

Week +15

I woke up this morning feeling very achy. My legs hurt! My arms hurt! My shoulders hurt! However, this was not a bad thing because it meant that I could feel the effects of what I had inflicted on myself on Saturday night. Let me explain.

We had been invited to a 50th Wedding Anniversary party on Saturday night. 50 years is a great feat, and the happy couple were boogying the night away to Bollywood tunes. A quick glance over to my dear wife, and I knew she was desperate to get on the dance floor. So off we went and spent the rest of the evening dancing (well, Vineetha was dancing and I was moving about in a not so pretty fashion). At one point, I did lose my balance and ended up grabbing her bottom to stabilise myself. She just thought I was being frisky!

The great thing is I didn’t fall over, which I probably would have done pre-HSCT. As well as having increased energy, my balance has definitely improved!

So, a little re-cap on the month since my last update.

I had been summoned by the DVLA to take a driving appraisal. I thought I was a relatively competent driver (Doesn’t everyone?), but I was apprehensive about taking a test. After all, my last driving test was taken when I was 17 and I was pretty sure I had accumulated a multitude of bad habits since then. 

A quick eyesight test (by reading a number plate on a car in the car park), and then followed a 40 minute drive, which was partly independent and partly instructed. Believe it or not, I received an overall A grade assessment, and left the driving centre with a bigger head than when I arrived.

On the physical side, I decided I should start walking outside. On the first day, I left the house to walk up the hill on our road. I reached a bus stop at the top of the hill, and decided to take a rest before returning home. I felt good enough to carry on, and so I did, walking a further mile until my legs started buckling. 

At that point, I felt like the Apollo 13 astronauts questioning whether I had enough energy to get back home. Fortunately, Vineetha was at around. So a quick call and she was there to rescue me, again!

Halloween arrived, and I had booked the Fright Night event at Hylands House. We had been warned that it would be very dark, and I was a little worried because of my poor balance. The girls really wanted me to go, and Vineetha told me she be there to hold my hand as support. 

When we reached, I took my crutch with me and managed the whole evening walking the Halloween trail and the grounds of Hylands House without any other help. This was proof to myself that my balance has actually improved, as well as an increase in my physical stamina.

Over the last week I have started some gym work, mainly using the treadmill and the weights machines. I can’t lift very much at the moment, but my strength is improving after each session.

And finally, my hair is growing back with a vengeance … even my eyebrows. Actually, my excessive eyebrows have been really bugging Vineetha, and I was coaxed into having them threaded and plucked to make me look less Neanderthal (apparently). It’s painful!! And my advice to all men out there is, DON’T DO IT!!

The last month has demonstrated slow but steady progress, and I can only pray that this will continue.

Thank you Dr Burt!

Tuesday, 1 October 2013

Day +70 [Week +10]

As the post-transplant days are moving on, the actual procedure feels as if it happened a long while ago. So bearing this in mind, I am going to change the time scale from Days to Weeks which means that I am now into week 10.

My blood work continues to be drawn fortnightly, and results have been good. As well as that, I am on course for my steroid reduction as I reduce to 2.5g daily from tomorrow.

I would love to say that there has been visible improvement since the Day +42 post, but in all honesty this has not been the case. 

However, under the surface things are happening!

My legs feel much firmer than before, such that I no longer feel the need to carry my crutch when I leave the house (Note: I have needed it for the last year)

I can walk upstairs much quicker than before, and I even attempted walking down stairs without holding the rail (I wasn't totally reckless, as I was already halfway down and in the event of a fall, I would hope not to hurt myself too seriously).

My fitness seems to be improving as the recovery time is much shorter after my cross-trainer sessions.

I am re-learning the art of tying my own shoe laces!

There appears to be some dexterity getting back to my fingers, as I practice picking up little objects and putting them into a pot as part of my daily exercise.

And I have hair growing, both on my scalp and face!

The downside of my new hair growth is that Vineetha and now the girls keep touching my head, as they said the hair "...feels nice and soft, a bit like a furry dog..."

Yet again, the girls of the household put me in my place :(

It reminds me of watching the girls play when they were toddlers, and I heard Tanisha tell Anoushka "I'm going to be Mamma, but you can be Daddy or the dog!"

Monday, 2 September 2013

Day +42

And so another two weeks has passed, and our home life is gradually getting back to normal.

Vineetha is back at work, and it's almost as if she has never been away. The girls go back to school on Wednesday, and we are frantically getting them prepared for the first day back at school.

For me it continues to be onwards and upwards, although there has been the odd glitch, which I shall explain. 

My blood counts have been tested on a weekly basis since our return from Chicago, and although there were mild variations the doctors had not been concerned until the results of the 3rd test arrived. My creatinine levels had gone from 58 to 63 and finally to 118, and now Chicago was paying attention. They told me to stop all medication that they had prescribed, as they were really confused by this and wanted to monitor subsequent blood results to see what the effect of suspending the medication would have on the creatinine level. 

Anyhow, one morning I went to the kitchen to make a cup of coffee and as the kettle was boiling I spied a white plastic pot (see below)

So I asked my dear wife what she used this for and she told me "I've started putting it in your smoothies to help build your muscle and give you strength".

So now I have to explain to Chicago that there may be an alternative reason for the raised creatinine level! Anyhow, we stopped the 'extra ingredient' from the smoothies and waited for the 4th blood result. And lo and behold it had fallen from 118 to 64. 

Oops!! (Note to self: check what goes into your food and drink)

Despite this glitch, things have been going well, and yesterday I took the next step in the steroid reduction from 7.5mg daily to 5mg daily. Fortunately, I am not feeling any ill effect from this and I hope this will continue.

I also noticed an almost overnight improvement in my walk on Day +37, demonstrated by a stronger step and a longer gait. It's still not a very elegant movement, but it's a positive!

Another positive occurred almost by accident, and I still don't know why I did it. As I was walking back to my study, my legs felt really good and I had a sudden urge to jump. 

So I did, and to my amazement I cleared the ground (not by much but there was definite ground clearance). I couldn't believe it as I haven't been able to jump for years. I was so excited that I asked the girls to video it.  The result is below:

One small step for mankind, one giant leap for Ben Rajan!

I emailed Vineetha the clip, and she asked whether I would send it to anyone else. I promptly told her that I was going to show the clip to anyone who would watch it.

So have there been any other changes?

The effects of the chemotherapy seem to be waning, and I have started some facial hair growth. This is not all positive as it means I have to start shaving again. 

As well as that, my scalp has developed a slight shadow which means my hair is growing back ( ... and just when I was getting used to the bald look). Vineetha is very pleased about this!

And finally, I took my first drive in the car last night, since leaving for Chicago back in June. It felt good!

Monday, 19 August 2013

Day +28

I can't believe it has only been four weeks since the day of transplant. So much seems to have happened since then.

By way of progress reporting, I will be moving to a fortnightly or longer schedule since the changes will be relatively slow from now on.

Anyhow, as of today I can report as follows:

1. Medication

My Pre-SCT cocktail of medication has ceased, and I am on the meds prescribed by NMH until the end of October. At this point, I should no longer require steroids, which will be fantastic.

Thereafter, I will only require an anti-viral until July 2014 and I will no longer return from the pharmacy each month with a large shopping bag of medication!

2. Sleep apnoea

Use of CPAP stopped on an experimental basis. No significant deterioration in sleep pattern from stoppage. Likewise, there has been to significant improvement in sleep pattern from resuming its usage.

3. Exercise

Use of cross trainer at home

5 Aug - 12 minutes
6 Aug - 16 minutes
7 Aug - 28 minutes
8 Aug - 45 minutes
9 Aug - 0 minutes
10 Aug - 0 minutes
11 Aug - 0 minutes
12 Aug - 10 minutes
13 Aug - 12 minutes
14 Aug - 15 minutes
15 Aug - 14 minutes
16 Aug - 12 minutes
17 Aug - 0 minutes
18 Aug - 0 minutes

The first week was great, as I was able to push myself every day. This was probably helped by the fact that I was sleeping regularly throughout the day and night. In addition, my steroid intake had only just been cut.

My 45 minute session (on 8 Aug) was a milestone, but also a killer as I was extremely fatigued for almost three days. I'm not sure that I've quite recovered. But I have a theory that the fatigue is due to the drop in steroid intake and my shortage of sleep since Vineetha and the girls have gone back to our regular life.

So my next plan of attack is to ensure I sleep for at least 10 hours, and not to overdo my cross-trainer sessions. This will be reported on my next update.

4. Other matters

4.1 I am showing some facial hair growth, though nothing on the scalp as yet

4.2 My left hand forefinger is showing some sideways movement (this has not happened for several years)

4.3 My hearing appears to be better in the morning, with deterioration as the day goes on (the girls suspect I am putting it on when I don't want to hear something)

4.4 My left leg feels stronger, which it hasn't since last summer when I broke the tibia and fibula

4.5 The tiled floor in our bathroom actually provides my foot with feedback. Pre-SCT it always felt as if I was stepping onto a slippery surface due to the numb sensation. It is still numb, but the improvement in sensation is moving in the right direction.

4.6 I have been told my voice sounds stronger.

4.7 I have been told that I appear steadier on my feet, with less of a wobble when standing still.

4.8 I was able to pick up a three-can pack of sweet corn yesterday. Normally, I would have dropped it immediately, but I was able to hang on for at least 10 seconds.

4.9 I have been told that I look younger, and the black areas under my eyes have reduced. This may be due to the use of Vineetha's vanilla scrub, but I'm taking that one!

Much of this is subjective, and there are other minuscule changes that I will not mention since I am not sure of these myself.

But I am taking each day as it comes, and trying to manage my fatigue (which is the biggest hurdle at the moment)

  • Seen by 34
  • NS What a wonderful update and I will keep you in my thoughts and prayers.
    19 August at 23:45
  • RV Please increase exercise slowly and steadily. As in 10% each week. The recovery is slow . don't push yourself over the limit.
    20 August at 01:56
  • TJ Good to hear!!!
    20 August at 07:39
  • DR Great news. Sounds like you over did the exercise  You'll get there. Sounds like its time to sell shares in pharma
    20 August at 09:53
  • BTR I think I need to spread the exercise sessions throughout the day (many short sessions, rather than one long session working to exhaustion). As for the medication, there are still plenty of people out there who need them. So I wouldn't get out just yet
    20 August at 09:59
  • WM Well done Ben keep up the good wk and our updates....:))) Xx
    20 August at 10:47
  • BEVJ Hey Ben. .. good to hear about every bit of progress you are making. We were away for a couple of weeks but had been monitoring your progress. Must catch up soon. 

    Tony sends his best too
    20 August at 15:38
  • KJ Great to hear your progress ..... It will be great to be medicine free . God bless all of you .....
    21 August at 16:44

Tuesday, 13 August 2013

Day +22

One of the side effects of the SCT seems to be that my appearance has become younger. This is not solely my opinion, but it was mentioned by R (Nushi's friend's Mum) and also by my friend J last week.

Anyhow, R was due to collect the girls this morning and EBG along with SG were due to visit this afternoon.

So I started my day with a hot shower, and whilst enjoying the water falling on my (bald) head, I spotted my wife's vanilla flavoured body srcub and decided it wouldn't be a bad idea to smear this all over my face. After all who knows how long the look would last, so I should make the most of it.

However, my efforts were wasted today as not one person commented on my new 'youthful' look

..... not one person at all, until Vineetha came home this evening and gave me a kiss before saying "You smell funny! What have you put on?"

Doh!! I was found out!

Darn these scented products .........

  • Seen by 30
  • ERB She said "funny" ? I guess she meant "fabulous" ! 
    14 August at 00:59
  • WM You are so funny insane at times glad to say its not changed your sense of humour!!! :)))
    14 August at 01:57
  • SS one of the more welcome side-effects it seems....and next time stick to the ummm...manly shower gels....
    14 August at 07:31
  • KJ Ha ha ha ...!!!!
    14 August at 14:27

Tuesday, 6 August 2013

Day +15

We're still finding it difficult to wake up in the morning. I was awake by mid-day, but the girls had to be woken at 2:30pm

The girls are missing the US very much. I think Vineetha's cousin with whom they were staying for the last 3 weeks may be responsible for this. They were thoroughly looked after, and I'm glad because they had such a great time. The first five weeks were not particularly fun for them, as they accompanied me to the hospital.

The first of my blood tests was scheduled for today, so I went to the surgery to collect the order before going to the hospital later in the afternoon. 

My condition today?

I am still CPAP free and I can walk barefoot on carpet. My tremor is slightly worse, though this could be due to the stress of travel.

However, I managed 12 minutes on the crosstrainer, and my target is to increase this each day.

Climbing stairs is hard, but it has been easier than when we arrived yesterday.

Anyhow, I'll take each day as it comes ...

Monday, 5 August 2013

Day +14

We landed at 6:45am in Heathrow T5. Mum, Dad and my brother came to collect us and took us home. They had left lunch for us, which we would have later before they left to let us rest and recover from the journey.

In the meanwhile, Vineetha was working like a whirlwind, despite her tiredness. Amy Morgan had advised that I should avoid dust. So my dear wife followed the instructions to the letter, and dusted/vaccuumed our bedroom before proceeding to change the sheets on all the beds. By the time I reached upstairs, she had crashed out and was not to wake until 5pm.

Our next problem was trying to get to sleep at night. All four of us were still wake at 3:30am ...

Saturday, 3 August 2013

Day +12 [Addendum]

Before leaving hospital I had told Dr Burt that first thing in the morning my hearing had improved since the transplant, although this would worsen during the day.

I cited my evidence being that I could hear the nurses talk to me without the use of my hearing aid.

He shook his head before saying "Oh no, I don't think we've done you any favours if you can listen to a woman in the morning"

I wonder what he meant?

WM I wonder???......:)))
3 August at 21:47
DR Let's hope this is the only side effect! 
3 August at 23:03
ML And I had such respect for Dr Burt .......
3 August at 23:15
SB Lol .. You have 3 young ladies to listen to., your ears are blessed !!
4 August at 15:11

Day +12

I decided to re-assess my baseline today, in order to measure any improvement in my condition.

I currently suffer from:
  1. Hand tremors
  2. Poor balance
  3. Weakness in arms and legs
  4. Little sensation in feet or finger tips
  5. Clawing of my hands
  6. Foot drop in my left leg
These are the symptoms that I hope will improve over the next 12 to 24 months.

What is amazing, and an improvement worthy of note, is the change to my sleep. 

For the last 8 years, I have suffered from sleep apnoea which required the use of a CPAP machine (JP has been telling me for years that I shouldn't need it due to my physical build). But if I didn't use it, I would stop breathing at night and so it became part of my bedtime routine.

While I was in hospital, Vineetha noticed that I no longer snored (I've snored our entire married life). So I tried an experiment, 'Sleeping without CPAP' for the last 3 nights.

It's not conclusive, but I could be CPAP free, as I am sleeping well and wake up refreshed. Is this another benefit of the SCT? I don't know, but I'll take it!

Anyhow, we've moved out of downtown Chicago and are now near to the airport for two nights.

The girls will be with us tomorrow night, and we're so glad to have them back.

And on Sunday we will be on our way home ....

  • Seen by 32
  • BTR Oh, I forgot to add Loss of Hearing ...
    3 August at 15:02
  • DC Pardon?
    3 August at 15:07
  • BTR The loss of hearing is quite useful at times, especially when I've forgotten to do something 
    3 August at 15:15
  • BAH Great news about the CPAP. Just remember, little by little things will get better. I bet you can't wait to see your daughters. Have a safe trip home. Your family is always in my prayers. -Bryan
    3 August at 15:43
  • WM Hope we still going to get these daily updates Ben when you get home.... Will miss it otherwise!!! X
    3 August at 19:34