Life after Experimental Treatment

Featured Image Credit: Heather Dalgleish

Elaine Dalgleish sits across from me, now aged 54, shoulder-length brown hair and a bright smile. On her lap sits two poodles, both fighting for her attention, but she is too focused to take notice, recollecting her story. 

Elaine (my mother,) was diagnosed with Relapsing Remitting multiple sclerosis (MS) in 2014, following a series of continuous kidney infections, and pins and needles in her body from the waist down. She described herself as otherwise feeling fine, and at that stage, she could still walk fine. An MRI confirmed doctors’ suspicions, that it was MS, where your immune system mistakenly attacks your brain and nerves. The doctors told her she wouldn’t die, but it was likely she could die from complications. 

In a short time, she deteriorated rapidly, she couldn’t walk or cut up her own food. Her otherwise normal health had been torn apart and she walked with her grandmothers’ old cane for short distances and mostly had to use a wheelchair. 

MS formally has no cure, but it does have experimental treatment, Haematopoietic stem cell transplantation (HSCT,) available in Russia for £40,000, with no guarantees. The treatment is still not fully unavailable in the UK as you must fit certain criteria as the treatment is still going through rigorous testing and can be unpredictable.  

Even with the slim odds, she felt her health had declined so rapidly and that her quality of life was so poor, that the odds were better than what she had now. 

Were You Scared?

I didn’t really have a choice. Yes, it was scary, but at the rate I was going, it no longer mattered that it wasn’t guaranteed, what mattered was that I at least tried. I was taking heavy pain relief, as well as multiple drugs a day to combat MS, give it a couple more years and I would’ve been in a wheelchair permanently.

After fundraising efforts from friends, family, work colleagues and helpful strangers, the £40000 was raised. Elaine was booked for 24th September 2018. 

Were you nervous?

When I first got there, we were placed in the Russian quarters as there was no space for me in the ‘foreign’ quarters and that was very scary, as it was barren and outdated. It wasn’t even guaranteed that I would be allowed to get the treatment until I’d gone through medical testing. 

The treatment was over a span of 4 weeks, consisting of – getting a full medical from X-rays, blood tests, to a full MRI to check your suitability. She had five days of being pumped full of steroids twice a day, the removal of stem cells, then intense three times a day chemotherapy for 4 days. Prior to the chemotherapy, you are made to shave your head, as the hospital didn’t want to risk the chances of hair falling into the catheter resulting in infection. Elaine notes that her husband actually was the one who got to shave her head, she laughs at the thought. Finally, your stem cells are replanted into your system, known as your ‘born again day.’

What is your born-again day?

It’s your new life, a complete wipe of your system. Based around the Iris flower, on this day you get your stem cell party, where you get a new life badge, you drop three splashes of dry ice from the container that your stem cells were stored in onto the floor and everyone claps for you. Kind of like ringing the bell after you finish cancer treatment, everyone gets biscuits and tea and celebrates your new life ‘MS free.’ 

Following your party, you are put into isolation until your white blood cells increase usually for around 10 days. Only doctors, nurses and the daily cleaner were allowed into your hospital room. 

Did you like isolation?

I mean it wasn’t bad, it was hard. But the staff made the room super clean and the armed guards in every building made you feel safe. A form of Russian pain medication is referred to Ketamine in the UK, which basically took away the discomfort, but I won’t be eager to try it again soon.  The food wasn’t exactly gourmet, but highlights included the steak and cooked apples. It was hard knowing I was alone, but I had a great support system who were poised to answer my calls at any time. 

Leaving the hospital, Elaine knew her journey was far from over, she remarks she actually flew first class on the way home to reduce the chance of catching infection with her low immune system. 

How was first-class British Airways?

I slept most of the way in all honesty, I was very tired, a little bit emotional. I had to wear a facemask and be incredibly clean, I wore them and used lots of hand sanitizer even before corona was a thing! But we did get a lot of freebies and my husband made full advantage of that! And I did sneak a couple of glasses of free champagne before I slept.

So, it came down to the big question, almost two years on since the treatment to cure MS. I was a little apprehensive to ask such a personal question to my own mother, just from how desperate I knew she was all those years ago for it to be a success. We don’t talk about it much, but I know some have judged her on the treatment not ‘working’ and that has hurt her. 

Did the treatment work? 

Yes. Definitely. Maybe not in ways that people had hoped, but in ways that I didn’t expect. It’s not a miracle cure, you can’t expect to go there and magically be better and be able to walk and run. It’s slow and it’s difficult, I’ve had delays with getting a hernia and my physio stopping because of COVID. But now I’m no longer in pain, I can walk better than I have done and I no longer take any of the heavy doses of medication I did. I wish I would’ve gone sooner, as soon as I was diagnosed in fact before most of the serious damage was done.

Do you have any advice for other MS sufferers who are thinking of the treatment?

Do it, go and get the treatment. If it doesn’t work, tell them at least you tried, and that’s the most important thing of all.

Published by Heather Dalgleish

21-year-old journalism student. Author and illustrator for In Full Bloom Magazine

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