I’m just a lass who got lymphoma… Sssssh… If you know who I am, please don’t say…
My first indication that something was seriously wrong with me was when I woke in the night with chest pains going up and down with my breath. It was summer 2015. My first thought was that I was in big trouble, because the pain was so bad I knew I’d not be able to drive to work if something wasn’t done, and I’d only started my new job a few weeks before. I’m a bit of a nerd really. My ever-loving was really worried about me as I started to faint getting back to our bed from the en-suite. He decided to ring 111…
Diagnosis and treatment
After four months of investigations I was diagnosed with Hodgkin’s Lymphoma, a cancer of the immune system.
I’ve had 1 mass the size of a cricket ball, 2 blue-light ambulance rides, 6 months of chemo, 5 days in Critical Care with PCP pneumonia, 15 radiotherapy sessions, 5 fractured vertebrae from something given in with the chemo (a really very rare side effect!) and because of them, a slipped disk that put me in a wheelchair for a while. I then in 2017 I had a suspected relapse and had to have my spleen removed. It turned out that the tumour in my spleen was something totally different, very rare and benign – a billion to one bit of luck, for which I’m very grateful… Now I just need twice daily penicillin for the rest of my life, because of my increased risk of infection. And I’m still kicking…
While I want to spend time with others with whom I have cancer in common, I’d rather not dwell on the pains, humiliations and sufferings cancer has brought my way. In my mind, there’s no value to be had from trying to grade what we have each endured, or letting it swamp our futures more than needs be. It’s all too immense to be measured when you’re in the middle of it. I just had to accept it and ride it out like it was a huge wave in an even bigger sea, hoping I’d reach the shore sometime soon. Each time I’ve reached that shore, I’ve found Sam’s Diamonds waiting for me.
Sam’s Diamonds is very special to me. I first found out about the charity as I was finishing my radiotherapy. At that time, what it meant for me was the chance to be with people who’d understand, and to express the sheer elation of still being alive! I got the chance to party my heart out at the fundraising ball the Widnes Rotarians so very generously hosted in aid of the Diamonds in the autumn of 2016. It was on a Rio theme and one of the dancers in a huge plumed costume complimented the sparkly crochet wig I’d designed myself – and I had a very little dance myself for the first time in over a year!
Then, a slipped disk (part of the damage caused by my cancer “pathway”) put me in a wheelchair for Christmas. When I was trying to recover from that and to learn to walk again for a second time since my diagnosis, the goal of walking the Delamere Forest 5km Race for Life with and for Sam’s Diamonds got me back on my treadmill. The first day I only managed 5 minutes, but then I did it the next day, again and again adding an extra minute onto my walking time each day, until I could go the full distance.
I worked on my daily physio exercises to my playlist of songs Diamonds had shared on our secret Facebook group. They reminded me that I should “Shine like a Diamond”. “I am titanium.” “Victory” was “in my veins” as the chemo ran through them, so “I won’t just survive… you will see me thrive”. I might be “like a small boat on the ocean” but this was “my fight song, take back my life song”.
The life I’ve taken back is never going to be the same as left me that night I got those first chest pains. In some ways it’s worse. I still have pain every day and I can’t walk as far as I’d like … or as far as I used to, and that can limit what I do. But in other ways it’s better. I’ve met so many amazing people, both on-line and face-to-face. I’ve set up my first WordPress website and written my first blog (https://lymphomalass.wordpress.com/). I published my first crochet and knit designs (https://www.ravelry.com/patterns/sources/lymphoma-lass-ravelry-store/patterns), and I’ve been given an award by a national charity (https://www.lymphomas.org.uk/about-us/blog/lymphoma-lass-shares-her-experience-attending-beacons-hope-awards).
For now, at least, the adventure continues and, for today, that’s enough.
Lymphoma Lass xx