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.
Written by
Mark63
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Thank you for taking the time to tell your story, it is very inspiring. Long may you continue to be stable. I have noted down some of the things you have found benefical to explore. Thanks
Hi Mark,great story! Weird coincidence I was driven to see a GP, with pains in my knees ,which came on very suddenly over a few months.She sent me for an x ray and as I had been a smoker years ago and had a bit of a cough, a chest x ray too.That was it.The tumour sitting in my lung was secreting something that caused pain in my knees.The day after surgery the pain was gone.I too am on Tarceva and incurable!best wishes.Julie x
Thanks for your message and letting me know about your experience as well. I had pain in just one knee which was partly a torn cartilage and also referred pain from the secondary cancer which I had in my hip and leg. Until very recently I have had no direct symptoms of Lung Cancer, I have never had a cough for example. The pain relief was largely achieved by bone strengthening as my the cancer had comprised my bones ability to bear my weight. Its really interesting to know about the different symptoms that we all experience. Hopefully it helps other people in similar positions. Good luck with the Tarceva, I hope it continues to work for you as well.
Interesting to read your story and great how you are two years after being diagnosed. I intend to write my story too. I have found mindfulness useful in the past.
I am 49 years old and a non smoker, I live with my partner and thankfully he and my friends and family have all been very supportive too.
I had a cough and an abnormal chest x ray and was referred by my GP to the local lung cancer clinic. Unfortunately for me, my abnormal chest x ray and abnormal CT scan were incorrectly diagnosed as right middle lobe collapse of my lung and not investigated further! This was in the January 2013.
It wasn't until November 2013 when I started to loose eye eight in my right eye that I was investigated further and a secondary tumour was identified behind my right eye. A biopsy of my eye showed that the primary tumour was in my lung.
Referral to a lung specialist and an urgent CT scan led me to starting my treatment. I was also at stage 4 at this stage with my head, bones and liver also affected. I had ten sessions of radiotherapy on my eye plus eye surgery (long story). I was treated with cisplatin and permatrexate 4 three weekly cycles. I am now on permatrexate three weekly.
The biopsy of the adenocarcinoma showed that I was ALK positive and I have been told medication to target this will be used when the chemotherapy is no longer knocking the cancer back.
With the first 12 weeks of chemotherapy I was very unwell and limited in what I could do. I am finding that with the permatrexate on its own the quality of my life has improved considerably.
My last scan has shown my tumours to be reducing which is great.
On a lighter note my partner was reading your post and is keen to try out a train journey, sounds exciting and something I haven't done since I went inter railing when I was 21 with friends.
Thanks for putting your story down, it is good to hear stories of people with similIar histories and makes you feel less alone. Not that either of us want to be in this situation but when you are you have to make the best of it.
Thanks so much for your reply. I am so sorry that you have had to go through all that, especially with the mis diagnosis. I am really pleased to hear that your new treatment is more bearable. I hope that continues to go well and you manage to go on a nice train journey soon. We went from our local station to Barcelona it was brilliant. I am hoping to go to Copenhagen soon.
What in the diet has helped? I have just been diagnosed with lung cancer and with methastities in adrenal gland. Getting very confusing messages re diet from well meaning people. E.g NO fats whatsoever, cut out all sugars,a spoonful of liquid yeast daily, gluten free bread etc etc. ANY helpful suggestions would be much appreciated
Thanks for your message. There is a lot of confusing information about diet, even if your not ill. I found exactly the same thing. I am not an expert on diet, I can only talk about my own experience and what worked for me. I read Chris Woolhams articles on canceractive.com, is book the Rainbow Diet is really good if you want more comprehensive information there is also dietary information from Macmillam. There are usually booklets on the Oncology wards or you could look on their website.
For my own experience, from what I read I decided to:
Avoid Salt and Sugar, particularly processed food
Avoid Dairy and other foods which create an acidic environment in your body. So I also reduced the amount of wheat - bread.
Eat whole foods trying to cover a rainbow of coloured foods, particularly fresh fruit and vegetables
Eat more seeds and pulses for Omega 3 and fresh fish rather than red meat.
I used a few supplements to boost my immune system particuarly Vitamin D as I have to avoid the sun (the natural source) because Tarceva dries my skin.
I drink Green tea for its immune boosting qualities and I avoid coffee.
I take Yaeyama chlorella with turmeric again for antioxidant and healing properties.
I drink lots of filtered water.
However, occasionally I break some these rules if really fancy a change, as its important to enjoy life particularly if your eating out with friends.
Hope this helps and good luck with your treatment.
Thanks for your message. There is a lot of confusing information about diet, even if your not ill. I found exactly the same thing. I am not an expert on diet, I can only talk about my own experience and what worked for me. I read Chris Woolhams articles on canceractive.com, is book the Rainbow Diet is really good if you want more comprehensive information there is also dietary information from Macmillam. There are usually booklets on the Oncology wards or you could look on their website.
For my own experience, from what I read I decided to:
Avoid Salt and Sugar, particularly processed food
Avoid Dairy and other foods which create an acidic environment in your body. So I also reduced the amount of wheat - bread.
Eat whole foods trying to cover a rainbow of coloured foods, particularly fresh fruit and vegetables
Eat more seeds and pulses for Omega 3 and fresh fish rather than red meat.
I used a few supplements to boost my immune system particuarly Vitamin D as I have to avoid the sun (the natural source) because Tarceva dries my skin.
I drink Green tea for its immune boosting qualities and I avoid coffee.
I take Yaeyama chlorella with turmeric again for antioxidant and healing properties.
I drink lots of filtered water.
However, occasionally I break some these rules if really fancy a change, as its important to enjoy life particularly if your eating out with friends.
Hope this helps and good luck with your treatment.
Dear Mark,
Thank you for taking the time to write down and share your experiences of living with lung cancer.
Your attitude and approach to life is inspiring and I hope that many others will read it and take comfort from your words.
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