I have written this short account of some of my experiences, of living with Lung Cancer for nearly two years.
I was diagnosed with terminal, advanced stage 4 non-small cell Lung Cancer nearly two years ago. Leading up to this diagnosis I had been ‘fit and healthy’; I was playing sport and going to the gym two or three times a week. I walked my dog every day up a very steep hill and enjoyed very long walks in the Pennines and the Lake District. I had a great job, which I loved, and a very happy and stable family life.
About a year before my diagnosis, I started getting some pain in my right knee. I saw a locum GP who initially recommended painkillers. Eventually after some weeks I was referred for an X ray and then a scan, which showed a torn cartilage. I was scheduled for some keyhole surgery to address this with the usual waiting time of about 4 months. I continued to walk and exercise but used painkillers and a knee support when I was playing sport. The pain in my knee continued to increase and I even had problems driving to work. I had a couple of falls, which caused very intense pain in my knee. Another locum GP suggested that I had a low pain threshold and prescribed stronger painkillers. I went on holiday abroad with my family and I had another fall on the first day, which gave me awful pain in my knee and back. On returning after a difficult flight with crutches and minimal legroom, my wife persuaded me to go back to my named GP. He immediately sent me for an x-ray on my hip as well as my knee. After an X ray and scans, an orthopedic surgeon told me that I had cancer as well as a DVT in my leg and a fractured pubic rami in my hip. I had a biopsy on my hip and a full body bone scan, which confirmed that I had non-small cell lung cancer, with secondary’s in my hip, sternum and rib. I saw a specialist oncology consultant who confirmed that it was stage 4 advanced and therefore terminal. I was with my wife, who broke down. I went into a kind of shutdown I barely reacted, it not because I am particularly brave or stupid. I just needed to deal with what was happening then, the immediate issue for me was telling my daughter. Because I have a need to cope or survive I have continued to focus on what is happening right now rather than what might happen. This attitude has been reinforced through Mindfulness and Yoga. Naturally, I am sometimes scared and I get upset and down, but I always feel able to turn away from the cliff edge and focus on living and enjoying the many pleasures that are still available to me.
My initial treatment was 5 days of radiotherapy on my hip. The seriousness of my condition meant that I had to have Chemotherapy almost immediately, after radiotherapy, with four months of chemotherapy (Carboplatin and Pematrexed). During this treatment my pain levels became severe and I was prescribed up to 130 mg of Zomorph. My experience of chemotherapy was tolerable, but not good. Along with the increased pain from radiotherapy, I found the sickness from Chemotherapy to be the most difficult. My sister a nurse, suggested I pushed for a better quality anti sickness than I was first prescribed which was really helpful.
The chemotherapy and radiotherapy didn’t work, which was pretty depressing, and my consultant then prescribed Tarceva (Erlotonib). This thankfully, stablised the cancer, after a month of Erlotonib, I then started a bone infusion of Zoladronic Acid. After a short time I noticed the pain diminishing in my hip and right leg. My walking had been improving and I was gradually able to walk without crutches.
With the help of my palliative nurse and GP I was able to reduce my intake of morphine and I have had a long period until very recently without needing to take any at all, just the Paracetemol and Ibruprofen. I even managed to fairly regularly walk up that very steep hill. I have had several holidays abroad admittedly by train rather than plane - which actually has been a revelation, the journey being as enjoyable as the destination.
Unfortunately I did have to give up my job, which was a difficult decision. I decided that I didn’t want to be miss out on some time to just focus on my family and myself time to enjoy life without the inevitable pressure of work. I also came to the realisation that I was really not up to doing a demanding job.
The drugs have been successful in maintaining my well being for nearly two years. The side effects of Erlotonib are tolerable, particularly since my consultant has worked out the best dosage to reduce the impact of drying skin and pustule spots. Very recently I have had further pain in my rib and sternum. I had more palliative radiotherapy, but this only has minimal success. I now have to manage the pain by taking a relatively low dose of Zomorph again. This has been a bit of a set back, but I feel still feel some confidence that I can manage the pain and hopefully in the future the symptoms may diminish again like they did in my hip. Over the last few months I have also noticed that I begin to get more out of breath when walking up slopes. I do not want to stop my walks so I will continue to persevere with this, admittedly at a slower pace.
I have also benefited immensely from some excellent complementary therapy. Mindful meditation has been absolutely invaluable; I had a series of sessions provided by Weldmar (a cancer charity in Dorset). I then used John Kabat Zinn’s books and CD’s to develop this practice. Weldmar have also provided sessions in Yoga and Reiki, which were also invaluable. I have also adjusted my diet, on reading Chris Woolham’s books and using the Cancer Active website. There are a many benefits to this that can help with cancer treatments and improve general well being. I also used the Macmillan financial and benefits advisers who provided some essential help with all the bureaucracy in accessing pensions and financial support. I have full confidence in my consultant and the team of staff on the oncology ward that administer treatments. My named GP and the staff at the practice are brilliant. The Weldmar palliative nurses and complementary team have been really important to me. I would not have been able to cope without their support. Most importantly I constantly draw on my family and friends for their love support and encouragement. Good luck with your treatments, and I hope reading this helps a little bit.