In October 2012 on a Saturday morning I was hit with excruciating chest pains on the right side around the breast area and shoulder. Pain akin to someone physically standing on my chest while pushing hot pokers into the cavity. Admitted to the local hospital I had numerous x-rays and blood tests until a consultant came in to see me and uttered those words “you are a very sick man”. A large mass covered the right pleura area with other small areas causing concerns. By the first week of November a cancer consultant told me that he thought I had asbestosis and that it looked like the most aggressive form. I was so numb with shock that my mind was racing thinking that I only had limited weeks or maybe months to live at this point and I was taken into another room with the lung nurse and my wife by my side. To be honest I was devastated and remember tears rolling down my face as I broke down crying. My mind taken over by thoughts of all the things I wouldn’t be able to do and see and of course my family and how they would take the news especially my parents who were both then in their late 70s.The lung nurse informed me that I would undergo a biopsy to confirm asbestosis the following week and I would also have a MRI scan of my chest to see what extent the mass in my chest covered.
At this point I’d virtually given up any thoughts of a long term future as my wife and I had googled asbestosis and the future wasn’t looking good.
My 49th birthday was on the 24th of November and my wife quickly gathered family and friends together thinking this may be my last birthday. It was a great night and some happy memories were made. 2 days later I had an appointment for results of the biopsy. A chest consultant explained that initial results now showed Thymoma and that I would be referred to a specialist who was more knowledgeable in how to treat the mass in my chest.
The 2nd December 2012 was the appointment I was dreading, very nervous and thinking why the hell this happening to me is I’m only 49 with loads of life in front of me. We met my oncologist Dr Hocking, a lovely man who put me at ease, he said that the tumour was wrapped around the main artery in my chest and that he would not be able to operate therefore this is a terminal illness. Also areas of the mass had been growing for so long that it had calcified in the thickest part of the mass.There were also spots of Thymoma in other areas and the MRI scan had shown spots in my liver which would be further investigated. Treatment would be a course of chemotherapy lasting for 6 treatments, 8 hours each as a day patient.
We decided not to start until after Christmas. I knew what after effects chemotherapy would cause as I had previously worked in the ambulance service. At the oncology department I found that my nurse for all my treatments was a friend I met when I worked for the ambulance service. This helped put me at ease and with my wife by my side and friends popping in to see me the first session went quickly. I felt remarkable fine afterwards, just a little tired. The drugs used were Cisplatin and Etoposide. The pain in my chest remained but I got on with life. Treatment on a Friday on a day’s vacation, recovery over the weekend, then back to work on the Monday. I decided to shave my head I could stand the thought of waking up to see what hair I had on the pillow. The second session left me feeling very tired a horrible taste in my mouth and I started getting numbness in both my feet and fingers. My family and friends supported me through and my wife had found the Thymoma site on Facebook so I had the chance to chat to people with the same condition, this helped so much because what we have is little known and the doctors are still to this day very vague.
My final chemotherapy session was in May 2013 and the effects really made a big difference. After each session my mouth was sore, tears felt as though they were physically burning my eyes and my throat soreness was only eased by eating countless amounts of ice cream. Now I was so lethargic, felt sick, lifeless I was in a state, yet I still pushed on as I was not going to let this beat me. I’d had a couple of hospital visits in between where the pain was uncontrollable and also one admission for neutropenia as I had a very bad infection.
I left the hospital with a carrier bag full of medication; I religiously took what I needed to although some of the side effects were hard to cope with mainly tiredness which caused issues at work.
I had numerous CT scans and MRIs whilst having the chemo and after to check on the tumour It had reduced in some places by 2-5mm. We were over the moon at the time and made all the side effects of treatment appear worthwhile.
We had purposely booked a vacation for September 2013 as this is something that had made me go to work, to push myself to have something to fight for. I believe in setting goals, and wallowing in self-pity is not my style, I’ve always fought through life. My son and step daughter were joining and there was no way I would cancel the vacation. 12 months after being diagnosed I had my 50th birthday celebrations which were fantastic and totally took my mind off the tumour in my chest. One milestone birthday I did not expect to celebrate.
Shortly after I had another oncology appointment, I went in feeling positive only to have that shattered once again. The tumour was back to its original size. I looked at my wife to see the pain in her face which broke my heart. Val has been with me on this journey from the start and she has suffered with me each time I am ill. Close family watch and see you go through the hell of this cancer, but I believe in not showing the pain and laugh it off. This helps keeps me going although I know those who are close know the real story. The consultant wanted to give me more chemo but I had already made my mind up that I was not strong enough mentally or physically and refused. I had also already booked my vacation for September 2014 and was not prepared to forego it even at the expense of my health.
The consultant had spoken about other treatments but was not a 100% sure if they would work, I agreed to getting a second opinion. We chose Dr Gilligan in Cambridge, one of the top thymic specialists in the UK. The appointment went well and we learnt more about my illness although the treatments we discussed were similar to as before. Dr Gilligan suggested having a dye injected and then having a MRI scan to see if it had infiltrated the Thymoma. The results were not good and the treatment he had hoped to offer was no further an option. I was referred back to Dr Hocking in Coventry and up until now I am still refusing further treatment. I have recently been hospitalised twice due to chronic infections in my chest which cause me to deteriorate rapidly. I was also prescribed Amitriptyline in the hope it would help but I have stopped taking this medication as I felt more unwell while taking it.
I am still slowly deteriorating and find I am getting more infections, coughs and colds and my breathlessness has increased. I use a nebulizer at least twice daily where I have Salbutamol and also have saline to help clear congestion from my chest. I am due another MRI scan in the next few weeks. I know the Thymoma is growing as the pain is becoming more constant and severe. Will I have more treatment of chemotherapy? No not yet.