Michele is one of our longest standing patient advocates. Ever since her diagnosis with stage 3b lung cancer in 2007, Michele has openly shared her story, from diagnosis, through clinical trials and treatment and out the other side to try and offer others some much needed hope and challenge the unfair stigma attached to the disease.
“My family and I know how painful lung cancer can be; my mum and dad both passed away from lung cancer within 9 months of each other and my auntie and uncle from the very same thing.
It was in 2000 when I began to cough up blood. I saw my GP the next morning and was admitted to hospital; a series of CT scans and other investigations showed I had vascular masses in my lung, spleen, stomach and bowel. It was the one in my lung however that was bleeding and causing all the problems.
Despite many further investigations, the doctors never came up with an answer, so I decided just to get on with my life, spending time with my husband Neil, watching my children grow up and working in a job I loved.
I underwent regular scans to monitor the size of the mass and the lymph nodes but, during a family holiday in 2007, I felt something wasn’t right. I had lost weight, developed a pain in my lung and felt nauseous all of the time. The doctor was quite insistent that nothing had changed but I was adamant – I wasn’t going to leave that room without a plan and so was admitted for a bronchoscopy.
As soon as I saw the doctor’s face, I knew something was wrong. The surgeon told me it was advanced non-small cell lung cancer and that they were unable to operate as there was a tumour in the upper lobe of my lung, as well as lymph nodes involved.
I asked the doctor if I would be alright; he didn’t know. I decided then and there that I would be! I was a mum, a wife, a daughter, a sister, an auntie and a friend – I had so many reasons to keep on living.
I was suitable to take part in the clinical trial, a combination of chemotherapy and radiotherapy, and started my treatment at the beginning of December. I can honestly say it was the hardest time of my life, not only for me but for everyone around me.
The worst part was telling my children. They were only 11 and 14 at the time. It’s something no mum ever want to have to do but I needed them to know that if they wanted to ask me anything they could, and that I would tell them the truth. I remember on Christmas Day only being able to eat one sprout and spending the rest of the day in bed.
I found swallowing really difficult. Little did I know it was stage 4 esophagitis caused by a severe inflammation to the oesophagus. I often had to have my oesophagus diluted to prevent me from choking. I somehow struggled through to the end of my treatment in April, weighing just 7 stone; my doctors even contemplated feeding me by tube.
If there was a side effect, I got it!
The treatment and medications made me nauseous, the anti-emetics made me constipated. Being constipated made you feel nauseous again – it was a vicious circle. I was hospitalised about five times. Once, I was admitted to hospital with a blood clot on my lung. The doctors decided that they were not going to resuscitate me but my oncologist – who I trusted with my life – convinced them to carry on with the treatment.
As a nurse I had a bit knowledge – sometimes a good thing, sometimes bad. I knew what could go wrong, but I also knew what to ask for when things weren’t right. I knew the hospital routine, when the bathroom would be free so I could have a long soak and a good cry if I need to. I listened to the advice people gave me. I tried going to sleep listening to music although Westlife wasn’t the best choice as I would end up sobbing!
I made time for myself, sometimes just to have some quiet time or go for a massage. It was here I found one person who I could tell all my fears to. She would sometimes just listen, sometimes advise but never judge. She got me through my darkest days.
It’s now been over 10 years since I was diagnosed and it’s hard to believe I was so poorly, so weak I couldn’t even get out of bed or take a bath or shower.
I still have dark days but I never thought ‘Why me?’. I do wonder how I got through it. The answer to that was the people around me. In my opinion, I had the best doctor looking after me, an amazing husband who was strong when I couldn’t be and fantastic support from my family and friends. I knew, day or night, all I had to do was pick up the phone and they would be there. They adjusted their lifestyle to fit with me and how I was feeling on a particular day. Although it didn’t stop them drinking champagne on the Orient Express!
The importance of humour
Having a sense of humour and making an effort to keep in touch with friends has helped too but it’s ok to say ‘I don’t feel up to seeing you today’ if you’re having a bad day. However, when you’re feeling stronger, try and push yourself a little bit harder to get back some normality. Make plans so you have something to look forward to. My mum and dad took me to Mauritius at the end of my treatment. My friend Bev and I had a great 40th birthday party and this year we’ll be planning one for the big 5 0!
Throughout my life I have always had my faith, but I believe in times of illness it can become much stronger. I remember when I was first diagnosed feeling an inner strength that I never knew I had. Having lung cancer is never something you’d choose but it’s made easier by human kindness, empathy and the people you meet along the way.
So that’s my story. I hope by sharing it I will bring hope to others who are living with lung cancer and their families who support them.”