Following a diagnosis of Common Variable Immune Deficiency (CVID), Gaynor Wall understands first-hand how important it is to look after yourself.
Thankfully, that awareness ultimately saved her life.
“Spring 2015 and all was rosy. We’d just moved into our beautiful new house, enjoying time with our two sons and lovely granddaughter and planning holidays. It was normal. Little did I know that soon life would never be the same again.
For some reason, I decided that my husband and I should have a full-body MOT. I’m still not sure what prompted me. Neither of us smokes, and we only drink in moderation, but my CVID diagnosis had made me take our health more seriously. We completed the scans and tests, then packed our bags and headed to Abersoch for the bank holiday weekend without giving them another thought
When everything changed
Less than a week later, the doctors told me they had found a tumour measuring around 3.5cm in my right lung. All I remember asking was, ‘Is it serious?’ The radiologist couldn’t give me an answer but said I was very lucky they had found it. Further tests confirmed my worst fear: adenocarcinoma in my right lung. All I could think was, ‘I won’t be here for Christmas.’
My medical team gave me three options, each with different risks and outcomes. I could do nothing, with an estimated survival of six months; undergo aggressive hospital-based chemotherapy, with an estimated survival of four to five years; or have surgery, which offered the possibility of a full recovery if everything went well. For me, surgery was the only choice. They booked me in for the following week.
Due to the position of the tumour, the surgeon needed to remove my right lung. I was aware that that could happen before I had the operation but just hoped it wouldn’t be the case. The immediate threat had been removed but I was now faced with a slow and painful recovery and a life very different to the active one prior.
Learning to live with one lung
On a daily basis I experience breathlessness and tiredness. I get frequent chest infections and I’m unable to stand for long periods of time. It took me quite a long time before I could drive my car again and we can’t walk as much as we used to. Worst of all, I’m not able to pick up my granddaughter or play with her the way I used to. Missed the things I took for granted – even working! I really enjoyed my job and loved meeting new people.
I vividly remember my first chest x-ray after my pneumonectomy, seeing an empty and void space where my lung used to be. It’s an image that will always stay with me. I was left terrified about what if something was to happen to my other lung. What chance would I have if anything else should happen? The never ending fear as your next check-up approaches. I now know that I have already been given the best possible chance of survival.
Gratitude and guilt
I’m sure there are many people out there reading this and getting very angry. At least you’re still here, they’ll be staying. And they’re right. I am incredibly fortunate; if I had taken the traditional GP route and not paid for a private scan, there’s every chance I wouldn’t have seen Christmas.
Guilt is something I’ve battled with throughout. I’ve felt ashamed and awful to have such thoughts as why me? because I knew I should be so grateful for the chance I’ve been given, something far too few lung cancer patients get.
However, I now understand your cancer story is completely unique to you, how you deal with things is unique to you. I stopped comparing myself to books and leaflets telling me I was taking longer than others to recover. Lung cancer is bigger than anything I have ever had to overcome. At the time I didn’t fully appreciate what it took from me – physically and mentally. Now I do.
There are still darker days, with highs and lows, tears and sadness. Sometimes, I retreat and don’t want to talk to anyone; at other times, talking brings me comfort. I allow myself to feel it all, and when I come out the other side, I begin to look forward again.
Why early detection matters
If my lung cancer hadn’t been found early, I would not be here. That’s a fact. I was told I wouldn’t survive past that first Christmas. I would have missed my son’s 30th birthday, my granddaughter’s first day at school, our pearl wedding anniversary. Most of all I would have just missed living life to the full.
Early detection of lung cancer is vital.
I always remember something my dad said to me after my mum died, also of lung cancer. Never think too long about doing anything you want to do – just go out and do it. And I intend to.”