Living with lung cancer is a rollercoaster and there aren’t many people who have been on a bumpier track than Melanie Bull.
Diagnosed with EGFR+ lung cancer in November 2018, Mel has undergone treatment for 39 brain tumours, had her top lobe removed, needed radiotherapy to treat mets on her hip, spine and right breast and coped with severe side effects of her targeted therapy.
In May 2022, Mel found out her cancer had mutated to small cell lung cancer and had six rounds of chemotherapy. She’s now waiting for the results of her latest scan.
Yet despite all this, Mel’s optimism has rarely faltered. She shares her story to show others that, whatever lung cancer throws at you, you still have your life to live.
“Don’t get me wrong, I do have down days,” Mel reflects. “I have days where I want to smash the house. It’s especially hard when something else shows up on a scan but trashing the house isn’t going to solve anything, and it’ll be me that then has to clean up the mess! I have accepted that this is my life and I have to try to get with it!
What? Lung cancer?!
“My diagnosis came completely out of the blue. I had what I thought was a trapped nerve. I also couldn’t feel my breast. It was numb. Then one evening I had a mild seizure.
“I went to the doctor. He thought I had a mini-stroke and so sent me for an x-ray and blood tests. That was on a Friday. On the Saturday, my husband Alan, and I were out dancing at a fancy dress party, without a care in the world.
“On Monday, we spent the day in hospital with me having various tests. The longer we were there, the more worried we became. Then at 5pm, we were taken into a little room and a cancer nurse came in. The rest was a whirlwind.
Lung cancer wasn’t the biggest concern
“Despite being diagnosed with lung cancer, the main concern was the secondary brain tumour. I had surgery to remove it, as well as undergoing CyberKnife on 19 other smaller, brain tumours.
“The recovery from surgery was difficult. I lost the use of my right arm and leg and my family had to help me learn how to walk again and use a knife and fork. Alan jokes that my talking came back very quickly however!
During this time, we also met with Dr Tan, a cardiothoracic surgeon at St Georges Hospital, to discuss treatment options for the primary lung cancer. She told us that they wouldn’t operate and remove the lung tumour as it was already stage four.
“This really confused us, especially Alan who is an engineer and used to fixing things! Why wouldn’t they take out the source? We were just met with the same response – ‘it’s not our practice’. Instead, I started on a clinical trial for a targeted therapy called Afatinib
What a difference a year makes!
“I had an amazing response to Afatinib, so much so that when I saw Dr Tan a year later, she agreed to do the lobectomy. She said my brain looked incredible(!) and the lung tumour had shrunk significantly (52%).
I can’t help but wonder though if this would have been an option had Alan and I not asked questions and challenged the original treatment plan. I’d therefore encourage anyone else who has been diagnosed to advocate for themselves or their loved ones as much as you possibly can.
“I had my lung surgery in December 2019. I also continued to take Afatinib, but the side effects were beginning to take their toll. I had severe acne and mouth ulcers. My nails were brittle, and I suffered terribly with vomiting and diarrhoea in May 2020.
“I felt like I was losing who I was as a person and as a woman. I felt unattractive so I spoke to my lung cancer nurse, who reduced the dose. I handled this a lot better but, after a while and a lot of discussions with my MDT, we decided that I would have a six-month break.
Progression
“I had an MRI in February 2021, which revealed more brain tumours. Once again, I had CyberKnife and, in April, I went back on Afatinib.
The return of more brain tumour also meant I had to surrender my driving licence again. That was incredibly frustrating. I’ve lost my driving licence twice since my diagnosis. It feels like your legs have been chopped off and you lose your independence. Sometimes it’s the knock on effects of the diagnosis which are harder to cope with than the disease itself!
“Fast forward to May 2022 and a PET scan showed pleural deposits. This marked the start of my lung cancer mutating from EGFR+ to small cell disease. I came off Afatinib and started chemotherapy, which I tolerated much better than I expected. The hardest side effect was losing my hair.
“I’ve lost my hair on three separate occasions now and each time it’s grown back differently each time!
“The first time my hair started to fall out, I took control and opted to shave it off. Actually my granddaughter, Lily-May, cut it off! We thought suddenly seeing Nanny with no hair would be really distressing for my grandchildren. Including them when I chopped it off was a way to try and reduce that upset.
Life at the moment
“It’s safe to say it’s been a hell of a few years and a huge adjustment. Alan and I had a 5-year retirement plan. We wanted to move out to Spain and have a place out in the sun where all our kids and grandkids could come and stay but sadly that’s been scrapped.
“Anyone with lung cancer knows you live in between scans. I’ve just finished my last round of chemo and I’m waiting for my latest scan results. If everything is stable, then we’re off on holiday because life’s about grabbing the chances while you can. Live while the going is good and deal with it the best you can when the results don’t go the way you want.
“So on this journey I have been treated at five hospitals – the two Royal Marsdens, St Georges in Tooting, London, St Lukes in Guildford and my local hospital in East Surrey. I would just like to say to all the nurses, surgeons, oncologists, consultants and cancer nurses – without all their expertise, professionalism and most of all their friendly humour, I’m not sure where I would be today. Also, the support of family, friends and Alan’s football players who have all given me great support.
“It’s not the life I ever would have chosen, but I can choose how I live with it, and thanks to them I continue my journey.”
