Jenny Hello and welcome to an HSCT Chronicles update – how I am, one year later. How exciting is it that I can finally say that I’ve had my one-year stem cell birthday? Yes, my immune system has now had a year of new germs thrown at it and it has survived.
I have spent the past couple of days thinking about just how poorly I was this time last year, having just undergone days of chemotherapy whilst also having the flu – definitely not something that I want to repeat in a hurry.
So, how am I doing, one year later?
The MRI Scans
First and foremost, I would like to say that, in HSCT for MS terms, the treatment has been a success, thank goodness.
I have now had two MRI scans, one in July 2019 and one in December 2019. Until I had the HSCT treatment, I had never had an MRI scan without active or new inflammation. The two scans since my treatment, though, have been great; no active lesions and no evidence of any new inflammation since the stem cell transplant. Yay! That is exactly what the doctors were hoping for and I couldn’t be more pleased. Although things aren’t all brilliant (more on that below), the fact that my body is no longer damaging itself, which could lead to even more disability in the future, is a relief.
The Symptoms
I have lost count of the number of times that people have asked, ‘How are you feeling after the treatment? Has it helped?’ Well, the answer truly is yes and no. Yes, it has stopped the inflammation in my brain but no, it has not helped my symptoms – mobility issues, spasticity, fatigue and some ‘cog fog‘. The neurologist was always very clear that HSCT does not usually repair old damage, though that never stopped me from thinking that I might be lucky enough for it to do so. I have heard about people with relapsing-remitting MS who have entered the hospital in a wheelchair and then walked out without support. The nurses told me about a lady they recently cared for who was able to walk out wearing the flip flops she hadn’t been able to wear in years.
When I was in the hospital, one year ago, I was on high-dose steroids and I think that they lulled me into false hope. Suddenly, I could lift my leg up and down! I didn’t have to physically lift my leg into bed! It didn’t feel like I was dragging a sandbag behind me anymore! But, those benefits didn’t last and I am still struggling with my walking now, having just received new crutches to help. I guess after living with MS for over 25 years, it would be difficult for my body to repair long-standing damage.
Still, I look to the future with hope – I am so glad that I am an optimist rather than a pessimist. I will continue to do all that I can to stay as healthy as I can with my MS through following the Overcoming MS 7-step approach and secretly hope that this ‘rollercoaster’ of post-treatment symptoms might still lead to some positive improvements.
The Hair
This has been a tricky year, not just due to the treatment, but because of how it has affected my hair! All the chemo lead to me losing all of my hair and a thinning of my eyebrows and eyelashes. This was difficult for me to deal with; on one hand, I know that it was a necessary side effect of treatment and that I chose this, whilst many others going through chemotherapy for other reasons, do not. But, for me, losing my hair was huge. I don’t think that I quite realised just how much I rely on my hair – to make me feel feminine and to make me feel like, well, me.
When it grew back, it was huge, like chemo-curly huge, fluffy and just not like my old hair. I decided to keep getting little trims on the advice of my hairdresser in order to cut off all the hair that was obviously full of the chemo meds. Now, I’m pleased to say, it is manageable. I have a short pixie and am trying to grow it. The colour has come back a little bit darker than before and I have decided to leave the bits of grey that I have in. I have a good friend who rocks her greying hair and I appreciate not having the upkeep to dye it every few weeks, or eventually having to have a ‘skunk stripe’ when I eventually grew it out.
Now, I just need it to grow!
The Forward Plan
So, one year later after HSCT for MS, what is my plan? To just keep going, I guess. I am getting some help from both the Rehab specialist doctor and Occupational Therapy to look into the significant spasticity in my left leg and also aids to keep me safe in the house.
I’m not due to be followed up from my neurologist for another year but I do have an immunisation protocol that I have been encouraged to follow. I need to have my titres checked (where they check whether I have retained any immunity from any of my previous immunisations) and get revaccinated as necessary. I am actually reading up a lot about this as there is a school of thought that certain immunisations can trigger MS, I would like to consider all of the pros and cons before I go ahead.
I’m still on anti-viral medicine mainly, the nurse explained, to lessen the risk of getting shingles. I was due to come off of it this month, one year on from my treatment, but she felt it would be beneficial for me to stay on it until I return from visiting my sister in Australia at the end of March.
Mentally? I have had a lot to contend with this year, health-wise, personally and professionally. I was sent a journal by my lovely blogging friend Robert at a 30 Minute Life and it has really been helping me to keep track of my feelings and putting plans into place to help me feel better emotionally. I’ve upped my journaling and meditation and it has helped me to stay so much calmer, especially in the wake of any tween strops that my kids have in the house!
I’ve kept up with my yoga, doing regular ‘Yoga with Adriene‘ workouts on YouTube, though I have to say that the new ’30 days of yoga: Home’ that she has started this year has been tricky for me, I really do need an adapted, low to the ground yoga practice. I find that my mental health is helped greatly by doing any kind of physical activity, so I recently started using The MS Gym on a trial basis as I have heard so many good stories about how beneficial it is for MSers, I’ll let you know how it goes!
Thoughts About the Whole Experience, One Year On
So, ultimately, would I do it again? Absolutely yes. I think that going through the whole process has made me stronger, at least mentally and has made me really see who my friends and support system are. And, of course, it has stopped the inflammation in my MS brain! It is worth it just for that because the idea of having progressive MS with new damage continuing to occur was so scary.
Advice for anyone debating having HSCT for their MS? I would emphasise the need to discuss it with their healthcare professional, as my experience does not necessarily reflect how their’s would be. But I would also say that though it was a huge mental and physical barrage to my MS body, it worked; and, for me, that makes it all worth it.
Best of luck to anyone going through HSCT, thinking of it, or just wanting to learn more about it.
Till next time
If you would like to read more about my HSCT treatment, previous blog posts are:
The HSCT Chronicles: It Starts!
The HSCT Chronicles: Days 1 – 5
Honest Hospital Bag Essentials
First off the good bit – Hurrah!! That’s such fantastic news about HSCT doing as it should. I bet you were thrilled when the MRI results came through. I’m so happy for you, Jen.
Then the not-so-good-bit. I think obviously people want you to be feeling better, without really rising these things usually come with a cost (like side-effects) and don’t repair damage nor work miracles with symbols, even if scans are such are good. How’re the new crutches? I think the pixie cut really suits you, you can definitely pull it off. And even though it wasn’t manageable at first it looks thick and healthy, which is good.
Sounds sensible with staying on anti-virals. I don’t know if my memory is just being awful as usual or if this is the first time you’ve said that you’ve got solid Oz plans – wow! End of March, not long to go. How long are you doing for? Do you mind me asking which part your sister lives in? I have relatives over there (aunt & uncle, cousins). Victoria area.
I think you’ve done insanely well, not just going through the treatment itself but doing everything else you do, at home, on your blog, and despite all the challenges you try to see the positives and remain hopeful. You absolutely kick ass!
Sending hugs and hoping everything’s okay at home, too (I saw your Twitter post about ‘life stuff’) ♥
Caz xxxx
Hi Caz! I’m not sure if I had said anything about Oz, but I am going on te 4th of March for 3 weeks 🙂 My sister lives in Sydney, as her husband’s family are all there. I can’t wait and I was all prepared to go on my own and be brave (though silently dreading it!) but my parents have arranged to have a holiday there so they can help me and my dad can catch up with his good friend who lives out there. That is a relief!
Thank you so much for your kind words about how well I am doing. If I stop to think of how much I have done, I am really proud of myself, but it can be difficult to remember it in the day-to-day madness of kids, trying to organise work and prioritising my health! It helps that people like you see that, thank you xx
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