Jolene arrives home from Mexico as she continues her MS battle
A Lerwick woman who has lived with MS for almost four decades has returned from Mexico after undergoing treatment in the hope of halting the disease.
Jolene Masson, 40, spent Christmas overseas to undergo a procedure called Hematopoietic Stem Cell Transplantation, which involves extracting cells from the body and blasting others with chemotherapy.
She suffers from RRMS – a relapsing-remitting form of MS – where her attacks have included loss of power in her arms and legs and years of nerve damage.
After months of research, she flew to Mexico last month with her partner Craig.
The treatment costs about £40,000 but with travel expenses and follow-up treatment Jolene believes it will rise up to about £70,000.
She returned home to Lerwick on Monday and says the doctors are happy with her progress.
“I’m feeling really good actually, I’m feeling fine,” she said.
“I’m feeling tired but I think that’s more from travelling and because it was early mornings and things. The nurses would come round between 7am and 9am to give us injections. I slept for 14 hours on Monday night.”
Jolene was happy to back in Shetland, and despite missing Christmas with family, is hoping to have a Christmas dinner this weekend.
“It has all gone textbook and it was very, very well organised. We had a diary that we were given when we got there and we just followed that. We got the tablets and things we had to take.
“It was all in the diary what we had to take so we were in charge of that. In the diary it also said what time we would be picked up to go to the clinic and there was a minibus waiting outside.”
The Lerwick mum said the procedure had been used to treat blood cancer patients for decades, though she thinks she is the first person with MS in Shetland to undergo HSCT.
After returning to the isles she says she must let the treatment take its course, and with a lower immune system must be wary of infections. The increased likelihood of getting an infection is one of the risks associated with the experimental treatment.
But Jolene is confident the process will bring her long-term benefits.
“The main thing is to halt the MS,” she said.
“Any sign of a reversal is a bonus. In a year’s time I will have an MRI scan and hopefully there will be signs that it has halted the disease’s progression.
“It’s just waiting. I’m feeling fine and I’m feeling good, my body has to recover from the effects of the chemotherapy.
“Other than that it’s just staying in isolation for the next few months, just until my immune system has rebooted properly.”
Jolene was one of 20 patients who underwent treatment at the clinic last month and said it was a great help being able to share their experiences.
“We were split into four groups of five so we had the support of each other,” Jolene said.
“We kept in touch with the others through a private Facebook page so we were aware of how everyone was feeling.
“Some of the folk were feeling it worse than others with the chemo and there were all different degrees of disability. It was very helpful having that support.”
And the well-wishers sending messages from Shetland has also helped during the lengthy periods of sitting around.
“It was quite boring at times when I was in isolation and we had to stay in the apartment and the days were long…Facebook was certainly a past time when we were there and getting the support from everybody was great.”
Her follow-up treatment will begin next month in England, which involves a course of five infusions.
She had planned to pay for the travel and treatment herself, though her nieces set up a Go Get Funding page to help.
Thanks to generous donations they have raised about £13,000.
“It’s a great amount towards the treatment,” she said. Because the treatment is deemed experimental she is unable to seek financial support from the NHS.