More Patient Stories
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David Long is 69 and lives in Southampton. In July 2018 he was diagnosed with mesothelioma. He recently tested positive for coronavirus and wanted to share his experience… Following his mesothelioma diagnosis, David took part in a clinical trial which went well for around 10 months until David experienced a severe reaction to it and…
In 2018 Brian Wallis, Mesothelioma UK Ambassador, was approached by friends of Private George Wing who advised him that George had never received the award of the Chevalier National de Legion d’Honneur from the French Government which the French President had declared in 2014 would be awarded to all British & Commonwealth soldiers who had…
David was diagnosed with mesothelioma in November 2018. Following surgery, he now has scans every three months. David wanted to share his story to remind others of the importance of gathering as much information as possible so that patients can make fully informed decisions about treatment options. David, 76, worked in the service sector until…
Chris is a 31 year old PE teacher who told his story at our Patient and Carer Day in October 2019.
This patient story is based on his speech.
Throughout his speech, Chris regularly thanked all the people in the room, especially the families and carers.
I never imagined I would attend a conference like this or actually want to be directly involved, but I am extremely proud and thankful that Meso UK invited me here today to be a guest speaker.
I was always told that mesothelioma was what they call an ‘older persons disease’ and I quite often agreed as all the forums, pictures and research backed this up. But more recently, I have seen evidence that even a child who is still in school has contracted the disease and I thought it was important to educate everyone that it is no longer an ‘older persons disease’ and there are patients of my age and younger.
My journey started in the early months of 2017. I had recently started a new post at a new school. With this change, I wanted to get fitter and started to cycle to work. After a few months, I started realising that I was losing some weight but I put this down to more frequent exercise. However, more symptoms followed. Eventually, I presented myself to the GP as after every meal I ate I looked like I was nine months pregnant and suffered from trapped wind.
My GP told me that my diet wasn’t great and it could be constipation and just assumed my symptoms would clear up. However, they never did. In April 2017, I found a lump above my belly button and was told it was a hernia and I needed surgery, which was done quickly and effectively. My GP said it was the cause of all my symptoms.
As time went on, it was clear that the symptoms were coming back and I was sent to my local hospital after almost collapsing in my GP’s surgery while waiting for an appointment. After numerous tests, scans, bloods and biopsies over four months, they still didn’t know what was going on. They thought it was my liver as it was enlarged on the CT scan, which caused a build-up of fluid. I had to have over 10 litres of fluid drained from my abdomen over a period of a week. After the fluid was drained they sent it off for testing and it came back inconclusive over four times, just like every other test and biopsy.
From then I was passed from specialist to specialist, hospital to hospital and yet still no-one knew why I was so unwell. It came to the point when I started doubting if I was really unwell. However, it was clear by November 2017 that I was seriously unwell as I had lost over six stone and was fitted with a feeding tube.
Eventually, my lucky break came in the form of Dr Cara Baker at St Thomas’s Hospital, London, who offered to do exploratory surgery in early February 2018.She agreed with me that this was the only option let. The recovery was difficult, spending a full week in hospital. After the surgery, she told me she found over 10 small tumours in and around my abdomen.
When I finally got the diagnosis from Dr Baker, I knew it was something serious due to the look on her face, the fact that we had a number of other medical staff present in the room and also how she told me it was such a rare cancer caused by asbestos that she never would have expected it in someone as young and fit as myself. To be honest, I never even knew what asbestos really was or how I could have come into contact with it, but at the time I didn’t really care about exposure as I couldn’t change the outcome now and that was the least of my problems.
As we left the consultation room to head home, she stopped me and told me to promise her not to look the disease up on the Internet until I had spoken to a specialist. Me being me, I did the complete opposite and I was shocked. However, being naïve and a very competitive person, I just thought this was another hurdle I had to overcome and the facts on the Internet didn’t apply to me as there was very little evidence of people in the UK who had this disease at my age.
However, those thoughts and my world soon came crumbling down when I met Professor Spicer at Guy’s Cancer Centre, who told me that this disease was terminal and a lot of patients don’t make it past 12 months.
I will never forget that day.
Before my appointment, I had built up so much fear and guilt that I couldn’t control my emotions. Thankfully, I got to meet my new CNS, the wonderful Rachel Thomas, who took me into a side room and never left my side. She talked through everything with me and got me fast-tracked into the consultation room to meet Professor Spicer, who I was told was doing amazing things with the disease and was the best man available to me at Guy’s Hospital.
My feelings and emotions
When I finally absorbed all the information, I remained scared, who wouldn’t? However, the dominant, over-riding feeling was guilt. It didn’t help when people kept telling me I shouldn’t feel guilty. It just made me angry and upset and I would often tell people that they have no right telling me how I should feel.
The guilt I felt was always about leaving my family and friends behind, but most importantly not being around for my wife Evelyn which hurt me more than anything, as I thought I was just going to die. I couldn’t sleep at night. I couldn’t have conversations regarding the future with Evelyn as I would often break down. The thought of leaving Evelyn - the girl I have loved for so long and who had spent many times in our relationship discussing children, our future, what we are going to do when we retire – things that were no longer going to happen. I just couldn’t see how I was ever going to get out of this, and it crushed me. I just didn’t want to be me anymore.
When I would go to bed at night, I wouldn’t be able to sleep and am sure as many of you know and have experienced, the night time is always when you’re at your most vulnerable as I often had a lot of scared and negative thoughts running through my head. I remember meeting with my GP at the time and explaining these thoughts and she was very hesitant to give me medication to help me sleep due to my mental health. And to be honest, I did often have the thought that it would be easier to just fall into a deep sleep and be done with. But again, that word, that feeling of guilt came back and I soon realised after receiving some fantastic psychological support and unconditional love from family, friends and medical professionals, that it was time to roll up my sleeves and go to war with the beast. Just like I had planned before I looked on the Internet.
So, once I was diagnosed there was no further interventions needed at the time as Dr Baker had removed all visible disease meaning there was no active disease to treat. This was quite difficult to take in to be honest. I had just been told I had cancer, a terminal cancer, and they didn’t want to treat me as there was nothing to treat. I wanted the doctors to blast me with everything they had. I wanted another surgery to ensure they had got everything. This made me feel really uneasy as I was told to go and enjoy my like and make some memories. That’s what we were doing all the way up to August 2018.
Prior to that date, all my scans were clear. No change. Nothing new. However, I was experiencing back pain and a shooting pain in my left shoulder at night when getting into bed. After a while, I was made to give the hospital a call to explain my symptoms. I thought this was a waste of time as I just put it down to overdoing it at work. I was enjoying a trip out with students to London Zoo for summer school then I got a call telling me that I had a large build-up of fluid (about 2.5 litres) in my right lung, which had shown up in a CT scan. We were called in straight away to meet Dr Bila, a lung surgeon who told me I needed surgery ASAP and they suspected that the mesothelioma was in my right lung now as well as my abdomen.
He was right. Following surgery, the biopsy came back positive.
When I got the results this time around, I was in a better state of mind as I think you’re always preparing for the worst. I just think it is part of the process. Every scan you have, every blood test they do, you are always anticipating that something will come up. I always say, when the hospital calls you in or you have a missed call, it’s never anything positive or to get excited about. It’s always something you need to prepare for. And that’s exactly what we did.
It was then decided that chemotherapy was needed. For my first round, I had an eight-hour cycle and I felt fine. I thought this was going to be a walk in the park. I went home, ordered a large kebab and laughed and joked. However, the next day was not pleasant. If you’ve seen the movie The Bucket List, then scene in which Jack Nicholson eats all his favourite foods the day of his first chemotherapy and offers some to Morgan Freeman, who declines - as he knows what’s coming. Jack Nicholson spends the next 24 hours with his head down the toilet. That was me, however it lasted a lot longer!
I had six rounds of chemotherapy in total, which I just couldn’t tolerate. Out of the six rounds, I was admitted into hospital on four occasions due to sickness and dehydration. I was really struggling with the treatment and was slowly starting to wonder if it was all worth it. Even though I only had six rounds and am fully aware that some people have had a lot more, I just couldn’t tolerate it. I was ill for around a week after and each time it got harder.
However, when I was admitted into hospital due to being unwell from treatment, a doctor told me that it was normal to feel rotten, but it was also a good sign. He told me that if I feel rotten, the chemotherapy is working and think of the damage it’s doing to the disease. I didn’t believe him at the time, but he was right. My post-treatment CT scan showed that all the tumours in the lung and abdomen had shrunk by a third.
The news was fantastic, but as Evelyn will tell you, I was the least happy about this. Everyone else wanted to celebrate but for some reason, I was like, ‘yeah it is what it is.’ I don’t know why I felt like that. Maybe as I knew deep down the chemotherapy can’t work all the time and until there is a miracle drug, I still had a terminal illness that is ready to attack at any moment.
My chemotherapy journey ended in February 2019 and all has been good since, which we were delighted with as we were able to enjoy some normal time. We wanted to make this time count, so Evelyn and I – along with friends – have done several charity events, including a half marathon and a coast-to-coast walk, raising over £6,000 for Mesothelioma UK, about which we are really proud.
However, my biggest and proudest achievement came on July 28th, 2019, when I got to marry Evelyn. I was the proudest man in the world that day I still am. We had a fantastic six weeks of travelling for our honeymoon in which we visited Singapore, Fiji, and Los Angeles. Not only was it a fantastic holiday, it was something we felt we deserved after everything we had been through.
Regardless of what I had been through physically, I cannot imagine how it made Evelyn, my friends and family feel, and I have always said it is harder on loved ones witnessing the pain and distress it causes to use patients. I was delighted I was able to have a fantastic trip with Evelyn and just do normal things without any worries.
Unfortunately, the honeymoon period with regards to the cancer came to an end. On my most recent scan last month (September 2019), we have discovered a new tumour. It is 4cm in size and around the pelvis areas. I once again wasn’t shocked as we always knew another day like this would come and we are currently investigating what we do next. I met Professor Spicer this week in clinic and he again showed me that he is the man for me.
We talked through options and are awaiting some information from other hospitals around the country before we decide on a plan of action. I have an absolutely amazing medical team around me and I trust them 100%. It gives me just enough time to have a few pints in Blackpool and dance the night away before I need to roll up my sleeves to get back to work with beating this new enemy.
What does the future hold for me?
Living with mesothelioma can sometimes cause us to worry too much about the future. I admit that earlier on in my diagnosis, I didn’t believe I had much of a future. However one thing I have learned from surrounding myself with a lot of positive people is that nobody knows what the future holds for any of us. I was once told that’s it’s not how long you live for but how much of an impact your make while living that counts and I plan to live that philosophy to the best of my abilities.
Currently, I feel fantastic and am not on any treatment or medication at all. Evelyn and I are discussing family and what that may look like in a year. We are planning a trip every half term, starting with New York in three weeks. I’m trying to persuade Evelyn every morning and evening that I need a therapy dog.
I’ve never been a person who gives myself much credit, but looking back I am extremely proud of myself and what I have achieved. I battled through the hard times at the start and came back fighting. I am currently still working 50 hour weeks in my job, which I love, while trying to raise money and awareness for Mesothelioma UK in order to hopefully find that miracle drug we all want. I believe I have a lot more to give as a person and I won’t let this disease defeat me. Only I can decide when enough it enough and it isn’t yet. As my wife always says, ‘we just never know what’s around the corner and what will be will be.’