Introducing Lorna
Lorna was diagnosed with stage IV bowel cancer de novo in July of 2018. She went from having no symptoms at all to being in really bad pain within a week or two.
"The first few months were scary,'' Lorna says. "My cancer had spread to my liver and there were also a couple of small spots on my lungs."
Lorna was put on chemo straight away and then had other tests which showed that her tumours were rarer ‘neuroendocrine’ tumours. These findings opened up a few more lines of treatment for Lorna.
Lorna had a blood biopsy in 2020 when she was close to exhausting all her treatment lines. This identified the ALK+ gene mutation. It came as a total surprise to both herself and her oncology team. At the time she was on immunotherapy but when that stopped working, her amazing team at the Royal Marsden managed to get her onto a specific ALK+ cancer inhibitor called Brigatinib. Amazingly, this is her seventh line of treatment.
“Across the seven treatments and 3.5 years I have had more than 60 rounds of treatment. I've also had a pulmonary embolism; an allergic reaction to an IV chemo which led to a stay as an in-patient for chemo every fortnight (not my favourite); I've lost all my hair and grown it back again; had a knot inside my vein on my PICC (peripherally inserted central catheter) line and have had over 150 bloods tests. Aren’t our bodies amazing?”
Day-to-day, Lorna really tries to be as ‘normal as possible’ - that’s her way. Being a seasoned pro, she’s confident enough to ensure that cancer is only a small part of her life and doesn’t dictate too much of the everyday stuff.
“There have been times on some chemo where that wasn’t possible and I am grateful everyday for the current treatment I’m on and how good I feel. I still work and I still do normal mum things. There is unexpected beauty in living a 'normal' life.”
Of course at times things have been terrifyingly sad and Lorna would do anything to not have cancer. But she says there have been some positives. “The help and love I have received has been astounding - especially at the beginning when I was so unwell. It was the start of the summer holidays in 2018 and my friends rallied around and made sure the kids were constantly busy, fed and supported. My girlfriends took turns to come to chemo with me and stay afterwards.I have never felt so supported. Although I have always believed in the positive, this all has restored any question I ever had about the good in humans.”
Lorna says cancer has also made her more honest too, especially with her time. She refuses to waste time doing things she doesn’t want to (unless it’s for her children). She’s also more aware of time and the quality of it.
"The relationship I have with my boys has changed dramatically too and been surprising for the better. We are much more open and honest and are definitely more loving. I know my oldest teenager toes the line a lot more than most at his age and while I'm grateful, I'm also sad that he feels he needs to do this to ensure he doesn’t bring me any stress.”
Lorna’s own mum died of stage IV breast cancer when she was 22 - a diagnosis when Lorna was just three years old. She feels this has equipped her well in dealing with her own children because she was once in their shoes.
“I feel like they believe me because they know I understand a little of how they feel. I’ve also told them how my mum didn’t always tell the truth to protect me and we have discussed her style at length. It has ended with me promising that I would never not be honest and I feel like those open conversations have brought complete calm and trust. In my case honesty is the best policy. I’m so sad that this is my truth but I’m in no doubt that having my own insight has helped with this situation.”
Lorna’s advice for anyone newly diagnosed is:
* Do not use Google
* If you do use Google (please don’t) know that the stats are outdated and inaccurate. You are not a stat.
* Find a really good support group (there are lots of great groups on Facebook and online that are type and stage-specific)
* Take one day at a time. Don’t think too far ahead just think of the next task and go from there
* Ask your CNS/specialist nurse/team for help if needed. They have loads of magic meds
* Advocate hard when necessary
And finally, Lorna adds, "I am so happy that ALK+ International has been formed as rare cancers have such limited research resources. It’s very positive for me and all of the ALK+ cancer patient population to see that activity being changed. My future self is extremely grateful to them.”
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