The HSCT Chronicles: My 6 Week Stem Cell Birthday!

Happy birthday to me, happy birthday to me… yes, it has been 6 weeks since I have had my own stem cells transplanted back into me following my HSCT treatment at Sheffield Hallamshire for my Multiple Sclerosis.

I have been home since week three and, I have to say, I am so glad to be back home.  The last few days in the hospital were a bit of a killer because I was feeling pretty well in myself but having to stay in the same isolation room with no company was sending me a bit stir crazy!

So, how have I been getting on?

Physical Health

I am part of a post-HSCT patient group on Facebook and everyone there talks about the ‘recovery rollercoaster’.  I am in early days yet, but that seems to be true – some days I feel back to (my) normal, other days, I just want to lie in bed!

Sleep

The things that most come to mind when I think about the last three weeks are fatigue and sleep; as in, I feel pretty fatigued and my sleep is in a bit of a shambles!  I was waking up through the night when I first arrived back home (perhaps a hanger-on from all my night time checks by the nurses in hospital).  Now, without fail, I am waking early – about half-past five in the morning, and struggling to get back to sleep.  This leads me to feeling fatigued through the rest of the day, which leads to me needing a nap, which leads to me not getting to sleep at night et cetera et cetera.  You get the drift.  So I need to get myself into more of a routine – making sure that I set my alarm during naps so I don’t oversleep and carrying out good sleep practices before bed.

Mobility

Many will know that my mobility difficulties are my most overt MS symptom. I have left sided weakness and use crutches and a mobility scooter outside.  This has not changed since my stem cell treatment and I did not expect it to (though secretly hoped that it would!) I notice that my walking is worse on some days than compared to others (correlated to my fatigue levels) and that fatigue of my leg muscles seems to come on more quickly than before.  As such, I seem to be able to do less when up and about since my stem cell treatment – I reckon that I should see this as a bonus and just not get up to clean the house, haha!

Time for some positives though. I definitely have more movement – all be it a very small amount – in my left leg.  I can now flex my foot more easily, making it easier to get my socks, trousers and shoes on.  I have increased range of movement and reduced spasticity in my leg, making it easier to get into bed or get into the passenger side of the car. I feel steadier when standing and feel like my balance has improved a tiny amount – noticeable when I try and squat down to feed the cats.  So tiny little improvements that are probably only noticeable to me, but are still big changes to my physical health.

Bladder

May be a bit of a random one to talk about but something that has been bothering me a bit since I entered the hospital for my stem cell treatment.  Whilst I was in hospital, I had what felt a bit like a urine infection.  This lead to urgency and pain. There were only minor changes on all the tests that were carried out and I was on antibiotics that would treat an infection anyway, so I just had to take pain killers to keep the symptoms at bay.  Something that my Dad noted when visiting me one day in the hospital was the regular amounts of tea I was drinking; I was offered a hot drink every three hours or so and got into the habit of taking them!  He said that the caffeine may be affecting my bladder and, low and behold, once I reduced my tea drinking, it did seem to improve somewhat. Since I’ve got home, I have allowed myself one cup of proper coffee a day then I stick to either decaf or herbal tea. I still notice it being uncomfortable at times and some feelings of urgency, but that is usually when I have not had enough water.  I have been really conscious not to drink alcohol, except for the very occasional glass, and that seems to be helping too.

Mental Health

I remember the day before my stem cell transplant, when I felt really, really poorly, I texted my husband and said that I had decided that I didn’t want to go through with it. It was a bit too late to change my mind!  Those few weeks in hospital were tough. I was away from my family, I felt awful and I didn’t know if the treatment would stop all the inflammation happening in my brain.

Well, I still don’t know if it has ‘worked’ (my next MRI will give us clues to that) but I don’t regret doing it.  Although I don’t feel 100% now (to be fair, when over the past 7 years have I felt 100%?), I feel better than I thought that I would at this stage and I stand by my decision to try anything that might help to halt my MS progression.

A couple things worth mentioning, that I think are having an impact on my mental health:

(Lack of) hair

In the whole scheme of things, this isn’t really that important, I know, but my hair has all come out and there are no real signs of it returning yet.  Early days and for now little caps, scarves and my wigs are my friends.  But I still get a shock when I see myself in the mirror and have noticed that my eyebrows and eyelashes have also thinned out.  One bonus is not having to shave my legs or underarms!  But I am ready for it to start coming back now so that I can feel more confident about myself; having no hair has affected the way that I view myself and how attractive I look.

Getting out and about

I was warned that I would have to take it slowly in terms of taking part in everyday life.  To be honest, my fatigue doesn’t make it that difficult at the moment, but I have had to miss a few things that I would otherwise go to (or at least try to): my daughter’s cheerleading competition, my husband’s music gig and parents’ evening at school, which takes place in a large hall full of people.  People have been really understanding – for example, we are going to speak to the teachers in a 1:1 – but I do feel bad for missing things that I would usually try to get to.  I just need to tell myself that it is early days and that it is important that I put my health first at this stage.

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So that is it! A short and sweet catch up on my 6 week stemmie birthday! (Apparently, I am now known as a ‘stemmie’ in HSCT circles).  I just thought that I would also link to my most recent Youtube video, recorded two weeks ago. I was having quite a good day here, I seem to have a lot of energy for me, lol.  I don’t know whether the fact that it was just half-term and the kids were off school has anything to do with the reason I am feeling so shattered today, but I am looking forward to a couple of days of rest now.

Till next time

 

 

 

If you would like to read more about my HSCT treatment, previous blog posts are: