"The mutual support is priceless. Yes , there can be tears, but more often laughter. They say it’s the best medicine!"
Sally’s Story
I’ve been living with Stage 4 lung cancer for over 7 ½ years. I’ve never smoked , not even one , ever. Nor have I ever had a cough , chest symptoms or family history of any cancer.
Back in 2013 I was still a few years off the magic 6O and retirement and already planning to spend more time in Greece, tick off a few more Munros and endeavour to improve my golf. Best laid plans and all that…….
In October I got some back pain and sciatica after a hectic weekend clearing out a garage and making many trips to the tip. As I’d not long got over viral myocarditis, I was even a smidgeon pleased that I’d done enough activity to get back pain! Physio helped but the pain came back in January. Blood tests were normal, my last chest x ray was fine. Let’s fast forward to the MR scan I nearly didn’t go for as the pain had eased off.
Feb 13th 2014 was a Thursday not a Friday but in retrospect I knew something was up when they scanned the rest of me as well as the back. I left the department at 7-15pm and my GP was on the phone at 8-30am the next day and in my kitchen 2 hours later to deliver verdict; MOST LIKELY STAGE 4 LUNG CANCER! Not one but TWO spinal secondaries! What the …….? Don’t be ridiculous. Have they got the right patient?
To say life changed in a nanosecond is an understatement.
I never went back to work. Within the week I’d made a grand tour of several hospitals, had a bronchoscopy, heard the words Incurable but Treatable and Prolongable, seen an oncologist and neurosurgeon and slowly registered the fact that my spine wasn’t far off imploding and that it needed urgent attention before we even got to the lung. This week, no later than next. Apart from sports injuries and the odd virus, I didn’t ‘do’ being a patient. How did this happen? I was terrified and not sure I’d be here in months let alone next year. On paper the figures didn’t look great. My will was hastily rewritten!
Within another week I’d had spinal surgery to basically scoop out of the nasties, take pressure off the nerves and insert a load of Meccano , sorry, titanium for support at both sites. I was allowed 6 weeks to recover before being blasted with 22 doses of spinal radiotherapy. I felt poisoned for weeks after. Life was a blur. Friends stayed with me, drove me to hospitals, fed me, poured the gin, made me laugh and helped me keep it together.
The “good” news during this time was that I had Adenocarcinoma and a genetic mutation, (EGFR) meaning I could take Targeted Therapy tablets rather than full blown chemo.
The blob in my lung shrank rapidly. An otherwise clear PET scan and MDT meeting later, I was offered more surgery to remove the bottom half of my left lung.
The operation on my back had to be done quickly. This time I had a choice and time to think. How I wish Maggie’s’ had been open at the time! Surgery wasn’t usually offered for Stage 4 patients back then and I dithered but I took the advice of all my team and knowing the primary blob would be gone completely and I wouldn’t have to worry about it coming back when the tablets stopped working gave me the boost. I needed. I said goodbye to half a lung in Otober2014. I’m immeasurably grateful for my team treating the patient and not following the “science”.
The tablets work for as long as they work! I crossed my fingers then and hoped it would be for longer than average. I’m already long past that. Fingers are still crossed.
I am still on the same magic pills and have learned to deal with the side effects (well almost, there’s still the odd surprise!). Super dry, mega sensitive skin, spots, a rash that’s worse in the sun, dry eyes, crazy hair, dodgy guts and an overwhelming fatigue that can come out of nowhere are just for starters.
On the plus side I think how healthy my lung and a half are and I’ve now got some great hats!
Life developed a rhythm around bloods tests every 8 weeks and CT scans every 16. So far there has been no sign of progression. It will happen one day, but I try to keep that at the back of my mind and get on with living aided by the fact that new treatments are emerging all the time.
Maggie’s Manchester didn’t open until 2 years into my cancer journey. I knew about the centres so I was willing the building to be finished. The sense of calm and relief on first walking in was immense , even more than I was expecting. There’s always someone to talk to and always a quiet, calm corner if you just want to gather your thoughts or clear your head.
Advisors are there if you need them and even if you think you don’t! I wasn’t sure it was my thing, but I was encouraged to join the drop-in relaxation sessions where I found it was possible to feel peace and calm in the midst of the storm that is cancer. Bliss! Regular relaxation has helped me cope better with scanxiety and actually stopped me from being a total gibbering wreck on scan day. No scan is ever ‘routine’ in my book, even after 7 years , there’s always the worry of a change leading to the next stage of the journey.
At Maggie’s I have met all sorts of people affected by all sorts of cancer. The mutual support is priceless. Yes ,there can be tears but more often laughter. They say it’s the best medicine!
The Lung Support group provides an opportunity to meet and talk freely with people who ‘get it’ and has been a tower of strength since it started. Sometimes you need to let off steam, sometimes you don’t feel like talking but just listening and being with folk who understand can be a great comfort. Cancer alone is bad enough but Covid , scary for all, shifted the goalposts and was especially anxiety provoking for those of us with already unhealthy lungs or lungs with bits missing. Maggie’s were on the case. They fired up the laptop , reached outside the building and came to us. Our first ‘virtual’ meeting was shortly after lockdown. Relaxation, other support groups and a new ‘shielding’ group soon followed online. As a ‘locked down’, lonesome shielder, I really can’t thank them enough. It was a lifeline.
Maggie’s helped make the difference between existing with cancer and living a fulfilling life with it.
Life isn’t what it was and never will be again, but I am learning to do things differently and to be open to new challenges and ideas. I was fiercely independent and not good at asking for help. That’s had to change but it’s hard! I realise I have lost confidence and lost a lot of ‘me’ in the last few years and it’s time to get both back. I needed a challenge and as mountains are off the agenda it had to be something else.
Taking part in MOTR is a massive challenge for me as it is right out of my comfort zone. I’m more comfy back of house. So why do it?
Firstly, to say a huge thankyou to Maggie’s and help make sure they can continue their amazing work.
Secondly to raise awareness of the changing profile of Lung Cancer especially in Never Smokers and increasingly younger women who are often diagnosed at Stage 4. As someone else has already said there still seems to be a stigma attached to lung cancer because of it’ s association with smoking. That needs to go! Anyone with lungs can get lung cancer!
Last but not least, I want to prove to myself I can get out of lockdown leggings, do something amazingly different, and regain some confidence. I want to pull my shoulders back , put a smile on my face and strut my stuff with my head held high.
A last shout out! I couldn’t have got this far without all my ace clinical teams, the unfailing support of friends (old and new) and amazing neighbours. I can’t thank you enough. I hope I do you proud on that catwalk!
