Today is a special day for me. On this day in 2016 and 2017, I left Bearhands and my babies to head to Brisbane to have treatment for MS. For those two years I had a form of chemo that wiped out my immune system in the hope that I’d get a break from MS.
I’d spent the weeks prior making careful lists for my In Laws about what sandwiches the girls preferred on their lunches, which days were sports uniforms and music lessons, what cycles I used on the washing machine. My In Laws are wonderful people who raised one of my favourite humans, so I knew the girls were in good hands, but it didn’t make leaving them any easier.
The first year I left the farm, I didn’t know what to expect. I was nervous, but also excited that my treatment date had finally come. The wait, all the while wondering if I was worsening, had been tough.
The second year, I put a brave face on, but I knew what was ahead of me and I felt only dread.
My body hates alemtuzumab. At one point my heart slowed to just thirty beats a minute. That episode was the most excruciating pain I’ve ever experienced. Even so, I had decided that Lemtrada posed my best chance of living the life Bearhands and I had planned, so I opted to finish the protocol.
There was a point this year when my MS symptoms returned and I really thought that 2020 would bring another dose of treatment, but I’m pleased to report that I’ve had no new lesions since I started Lemtrada four long years ago.
In the days after my first dose of treatment, the energy required to make the girls lunch and get them to school, would see me climbing back into bed after pickup. Today, I’ve done the school run, worked, exercised and eaten a healthy lunch. This afternoon I’ll pick the kids up, drive to guitar lessons, then come home and make dinner and while I’ll still be in bed early, I won’t have that terrible bone-aching pain or horrible all-over itch that followed treatment.
I feel healthy
and oh so very grateful.
Grateful that our health care system saw fit to invest $120,000 (that’s what it cost before it was available on the PBS) into my ongoing health.
Grateful that I seem to be one of the 30% for whom the treatment is effective.
Grateful that, so far, the long term side effects are manageable.
(But mostly grateful that I don’t have to get in the car and head to Brisbane for another dose.)
For my newly diagnosed friends and readers, I know some days are really tough, but there’s a light at the end of the tunnel.
I wish you wonderful, long-lived, good health.
Though I’ve visited your blog from long before your diagnosis, this is my first comment. I was so very happy to read your health update and learn how well you’re doing. I’m so pleased for you. I’m in awe of your courage and honesty and hope that you continue to feel healthy, fit and vibrant. Thank you also for your “real food” recipes and stories of family life ?
Amanda Smyth says
Thanks for your comment Maria. I don't blog as much as I'd like these days, but I'm pleased my recipes are still helpful. A x