"Welcome to your new beautiful life" Lynsey Johnstone
In June 2022 I was told I had six to twelve months to live. Thirty months later in December 2024 my oncologist tells me that a recent PET scan found no evidence of active cancer.
This should not have happened, but it did.
I have written this blog not to impose what I have done onto others as I believe each of us is unique, but given my good fortune I believe I should not keep it secret. I want to make it available to anyone similarly diagnosed and those who care about them. If it gives hope to one person I will be happy.
Here then is my story.
My life before diagnosis
My life up to December 2021 had been pretty ordinary. I ate what whateverI liked, and I liked most food, but I loved fish and chips, curries, pizzas, ice cream and cereals. I am ashamed to say in those days, I could only cook three meals, beans, toast and beans on toast. So unless it was cooked for me almost everything I ate was processed in some way. I drank fairly heavily. Four or five evenings a week I would have a couple of beers at home followed by a couple of large whisky and cokes or glasses of wine. Then once or twice a week I would have a couple of proper sessions in a pub. Maybe that should read "sessions in a proper pub". After football, golf, or work, a few pints was what I really looked forward to. Almost my entire sociall life revolved around alcohol.
Then in December 2021 I started having pains in my back and I contacted my local doctors' surgery. I stopped drinking alcohol. These pains eventually went away but my doctor had wanted to establish what was causing them, and over the next six months I had seven more consultations, three blood tests, four scans, a gastroscopy and two biopsies.
Diagnosis
In May 2022 an oncologist at Kings College Hospital, London, told me that I had cancer. He explained that I had two tumours in my liver and because they were 10cm and 11cm in size they were not amenable to surgery. He told me I had two to three years to live.
Then just when I thought things couldn't get worse, on 20th June 2022 an oncologist at William Harvey Hospital in Ashford, told me that a gastroscopy had revealed a third 4cm tumour at the junction of my oesophagus and stomach. He said, "You have 6 to 12 months to live".
Three new symptoms
At this time I also started experiencing three new symptoms. Firstly, I was getting very mild pains at the top and bottom of my liver. Whilst these pains were mild (1-2 on a scale of 10), I felt them every night. Secondly, during my daily jog I was unable to run more than 400 yards without having to walk and recover before starting to run again. Thirdly, I was unable to eat my food at my normal rapid rate. After three or four mouthfuls I would feel saturated and had to wait a short while before taking my next mouthful.
Letting people know
Between December 2021 and May 2022 I had managed to keep my medical appointments secret but at the time of my initial cancer diagnosis I felt I had to tell my family. Telling my wife and children I had cancer was the hardest thing I have ever had to do.
I decided to tell my friends what was happening to me with a Facebook post. I felt this was the quickest and easiest way of getting the message out there. I ended the post with these words "I realise this will be a shock and I apologise for that, but I believe it will help me knowing you understand what's happening and the next time we meet, you will also know the terms on which we are meeting and we can make the most of that time"
The immediate support I received from friends was overwhelming. I was given information that has proved priceless. Fellow cancer thrivers, their family members and friends prepared me for the roller coaster ride I was in for. I am forever in their debt. Without their support I would not be here.
Research and deciding what to do
I needed to decide what I was going to do. My world had changed. Things that had been important to me just weren’t important anymore and lots of new things needed understanding. The day after being told I had cancer I sat down and wrote what I thought I had to do. I realised I needed to do some things to make life after my death easier for my family. I arranged to get my will written and planned to get rid of stuff I didn’t really need anymore. I then wrote three things on a piece of paper, "reduce stress, exercise and diet".
I started doing some research. My focus was going to be on the people who lived longer than expected. I wanted to be one of them, I didn't want to die, there were too many wonderful reasons for living. I was determined to be an outlier. What was different about outliers? What did they do?
I listened to podcasts and watched YouTube videos but my main source was books.
Based on this research I started writing a weekly schedule which I printed off every Monday. Some things on my schedule I did every day and others less often.
The schedule has evolved over time. Every Sunday I would review what was in it and make any changes I wanted to. In December 2024 I started reading a book by James Clear called Atomic habits. In it he quotes Jacob Riis "When nothing seems to help I go and look at the stone cutter hammering away at his rock, perhaps as much as a hundred times without as much as a crack showing in it. Yet at the hundred-and-first blow it will split in two, and I know it was not the last blow that did it, but all that had gone before".
I know that I could not have started in May 2022 doing all the things that have appeared in my schedule. Each gradually and slowly became a habit.
Chemotherapy
My oncologist prescribed twelve FOLFOX chemotherapy sessions. It was apparently the maximum dose I could receive. This was palliative care. My first chemotherapy sessions were in July 2022. Before the chemotherapy started I had a PICC line inserted which ran from my upper arm to veins near my heart. It was a completely painless procedure. After each chemotherapy session in the hospital I was given a continuous pressure pump which pumped chemotherapy into me for a couple of days while at home.
Chemotherapy in the hospital, chemotherapy at home and the continuos pressure pump.
The chemotherapy team were excellent, very kind and thoughtful. They all explained what they were going to do in a very reassuring way. In the first week of chemotherapy, I suffered nearly all the side effects but in an extremely mild form. These side effects disappeared the very next week and never returned. When I listen to the stories of others who have gone through chemotherapy I realise how very lucky I was.
In August 2022 all three of the symptoms I had started experiencing in May suddenly and simultaneously, went away. I now had no pain in the area of my liver, I could eat quickly again with no feeling of saturation and early one Sunday morning tears were rolling down my face as I jogged for four miles without having to stop. I knew something good was happening. None of these symptoms have returned. They remain for me critical indicators of how I am doing.
My first two scans in the Autumn of 2022 had showed that my tumours had reduced to 80mm and 65mm
Post chemotherapy
My last chemotherapy session was on 1st March 2023. Later that month my oncologist told me that my tumours were now stable I took this to mean that while they had stopped shrinking, they also weren't growing.
He suggested that we take a break from treatment. He explained that it was not guaranteed that during this break the tumours would not start growing again. This was a chance to see what I could do so I agreed to the break from treatment. This period is when I was most focused on my schedule. I rarely missed any of the activities. I fasted for seven days every month and combined the fasting with oxygen therapy. (To date (December 2024) I have not gone back to medical treatment. Just blood tests and scans. I am not on any medication.
By November 2023 without any treatment, the tumours in my liver had further reduced to 40mm and 36mm. The tumour at my gastro oesophageal junction is now referred to as a thickening of the wall.
On 13th February 2024 my oncologist told me that my tumours were still stable. I asked him what it meant now that my tumours were reduced so much and had been stable for so long.
He then showed me some scans on his computer screen. He compared scan images from May 2022, when I was first diagnosed (on the left below) with my latest scans (on the right below).
This was the first time I had seen these images. Suddenly a penny dropped, the pains in the area of my kidneys probably weren't unrelated. It looked to me like other organs in my body were being squeezed by my greatly enlarged liver.
Then my oncologist said, "You can see they are just a fraction of the original size. So now the question is, is any of that still viable, is it just dead, is it just scar tissue?"
I am unable to adequately describe how wonderful it was to hear those words. I understood that he didn't know for sure but for my oncologist to say it was a possibility was overwhelming.
Throughout 2024 CT scans revealed that my tumours were still not growing and were stable. In November my oncologist agreed to arrange for a PET scan which could give a better indication if my tumours were active. On the 2nd December I had a PET scan and on then on the 19th December 2024 I was due to have a telephone consultation with my oncologist at 4pm. In the morning I received a telephone call from the oncology unit at Canterbury. My oncologist had asked one of the team to call me and tell me that he thinks it might be best if I come into the hospital and see him rather than do the consultation on the phone. Tell David there is nothing to worry about but he might like to see the scans.
I spend the rest of the day coming up with reasons why he might do this. I think there are two possibilities, either it's good news and he wants to tell me that to my face or these scans are inconclusive and he wants to show me the scans to explain why. As I get out of the car to walk into the oncology unit I think but surely he wouldn't have asked me to come across to Canterbury to show me nothing, no active cancer. But that is exactly what he has done. "Well, the PET scan did not find any active cancer" He says. Although I was beginning to believe this was a slim possibility to have it confirmed is of course wonderful.
He then shows me these two scans on his computer screen.
The scan on the left is a scan from 31 May 2022 and the scan on the right is from 2nd December 2024.
A positron emission tomography (PET) scan uses a glucose based tracer called FDG (fluorodeoxyglucose) that highlights areas of high metabolic activity in the body, which can indicate active cancer cells since they tend to consume glucose at a higher rate than normal cells. So the areas on the scan that light up bright orange/yellow suggest cancer. So looking at the yellow highlights on the left scan above thats how big my tumours were in May 2022. In the right hand scan not only have the yellow areas gone but my liver has returned to a normal size. My liver function is normal. I feel so lucky. My oncologist handed me a written report of the scan findings which stated:-
No local FDG avid lession is identified at the gastro-oesophageal junction
The hepatic metastatic disease identified on the previous study (31st May 20222) is no longer seen
No interval/recurrent FDG avid disease is identified.
My new beautiful life
Included in a bucket list I wrote in June 2022 was the idea to see and spend time with as many of my friends as possible. I also planned to take photos of me with each of the friends I saw to create a record for my children of the people that had been important to me in my life.
In November 2022 I travelled down to Plymouth for a long weekend. Plymouth was my home town but the journey from there to Paris where my wife’s family live was not an easy or quick one. So in 2018 we had moved to Ashford in Kent. That weekend in 2022 in emails and in another post on Facebook I provided my friends with a list of places where I was going to be. At 7.45 on the Friday morning I arrived at the first of those places, a cafe overlooking Plymouth Sound. I did not expect anyone to be there, I just thought it would be a nice place to relax after the drive from Kent. But when I went in, there was Lynsey, a cancer surviving friend who was waiting for me to arrive. She said, "I wanted to be here first just to say, welcome to your new beautiful life".
I think even then, I sort of understood what she meant.
Then in June 2024 a book called Life with full attention arrives from eBay. I read the first few lines of the introduction.
"Seeing the blossom.
An interview with television dramatist Dennis Potter was conducted when the writer was dying of cancer, when he knew he only had a few weeks to live. He talked about plum blossom in his garden.
"Last week, looking through the window as I am writing, I see it is the whitest, frothiest, blossomest blossom that there ever could be. The nowness of everything is absolutely wondrous. If you see the present tense, boy do you see it! And boy can you celebrate it!""
I have probably lived more in the last two and a half years then I did in the previous ten. I am sure this has both protected me and helped me heal. Not so much because of the things I have done or the places I have been but rather because of the people with whom I have shared this time. That collection of photographs of me with my friends that was an intended memorial has become a celebration of life.
In November 2024 I travelled back down to Plymouth and met my friend I was wearing a
T-shirt with the words, "Welcome to your new beautiful life" Lynsey Johnstone, written on it.
Help from my friends
I have mentioned the value I place on the help I have received from my friends. Their advice, time and encouragement has been and continues to be invaluable to me. I want to tell you how they supported me in another way.
I like going to art galleries and I am a particular fan of the French Impressionist artists.
So, a very special item on my bucket list was to travel to Washington, Baltimore, Philadelphia, New York and Boston for the first time and visit the art galleries there.
Paul Durand-Ruel, the art dealer bankrupted himself several times supporting the impressionists when buyers in France, the UK and the rest of Europe were hard to find. He eventually found buyers in America. Durand-Ruel once said "The American public does not laugh. It buys! Without America, I would have been ruined, after having bought so many Monets and Renoirs". The Americans continued to buy and that is why so many impressionist paintings are in the galleries in this region of America. The ships bearing those paintings on landed in Boston.
During the spring of 2023 my friends bought 27 of my paintings and prints that I had shared with them on Facebook.
In the summer of 2023 thanks to the help of those friends I had the best of times in America checking out paintings I had previously only seen in books.
This trip to America made me realise how effective a bucket list can be. I strongly believe it was really good for me to have something positive to look forward.
Radical Hope by Kelly Turner
One book that had a particular impact on me was by Kelly Turner. It is called
"Radical Hope. 10 Key Factors from Exceptional Survivors of Cancer and Other Diseases"
The book is based on research she conducted by interviewing outliers and asking them what they did. Kelly dedicates the book “To anyone who has ever felt fear when what they needed most was hope”.
She analysed over a 1000 spontaneous remissions documented in medical journals and identified ten things all these survivors did.
The ten factors Kelly Turner cites are:
1. exercise
2. radically changing your diet
3. taking control of your health
4. following your intuition
5. using herbs and supplements
6. releasing repressed emotions
7. increasing positive emotions
8. embracing social support
9. deepening your spiritual connection
10. having strong reasons for living.
Penny Brohn
In March 2023 a friend told me about the wonderful charity Penny Brohn. This is from the home page of their website:
"Penny Brohn UK is a cancer health and wellbeing charity. We help people feel better in mind, body and spirit by offering
everybody with cancer a choice of personalised cancer care. All free, safe and backed by research"
I registered with them and over the next few months I attended several of their online classes in exercise, yoga, nutrition, mindfulness and creativity. I also had wonderful one-to-one sessions with a doctor and a nutritionist. I found their help and guidance invaluable and I highly recommend this charity.
The mindfulness of painting outdoors.
Between 21st May 2012 and 20th May 2013, long before my cancer diagnosis, I painted 365 pictures outdoors on the South West Coast Path. An average of one a day. Some days I painted two so that I could be at home for birthdays and Christmas. In attempting to reduce stress after my diagnosis I started reading up on mindfulness. I read that it is all about being in the present, not thinking about the past or worrying about the future. I then realised that without knowing it I had spent an entire year practising mindfulness in the very best of locations and so I have returned to painting outdoors, travelling back down to Devon and Cornwall and across to Auvers-sur-Oise in France. This time I had a new perspective on why I had enjoyed that South West Coast Path project so much.
Thomas Seyfried, Sarona Rameka and fasting
Shortly after I had been diagnosed a friend confirmed what my intuition had told me about the importance of diet. She mentioned the work of Thomas Seyfried, a professor of biology, genetics and biochemistry at Boston College in America.
He was the author of "Cancer as a metabolic disease. On the origin, management and prevention of cancer".
I have watched interviews with Professor Seyfried and when he is asked, "What would you do if you were diagnosed with cancer?" he replies, "I would get my GKI down below two". GKI stands for Glucose Ketone Index which is a measure of the balance between glucose and ketones in the blood. Professor Seyfried proposes that lowering glucose availability while increasing ketones (an alternative energy source derived from fat) helps to create an environment less conducive to cancer cell growth. This he argues is because cancer cells rely heavily on glucose (sugar) for energy.
Towards the end of my chemotherapy treatment I found a video on YouTube entitled "Sarona Rameka beats stage 4 terminal cancer with just keto & fasting"
Sarona, who started having severe pains in her chest when she was 37 weeks pregnant with her first child, was eventually diagnosed with stage four cancer and given a similar prognosis to mine (six to twelve months). She was also told that her treatment would be palliative and that her cancer was incurable. At the end of her video Sarona's five year old daughter comes into the room. Her daughter is now seven. In the video Sarona explains that she believes that what has saved her is her fasting. Her first fast was for twelve days and she now fasts for seven days every month.
Sarona’s video inspired me to fast. My first fast was for ten days and like her between March 2023 and August 2024 I water-only fasted for seven days every month. When I fast I drink plenty of water, probably twice as much as I do normally. I also measure my blood pressure, pulse, temperature, weight and blood oxygen levels every morning. Meanwhile I still do my exercises.
Research conducted by Dr Dominic D'Agostino and his colleagues, including Angela Poff at the University of South Florida has shown that combining fasting with hyberbaric oxygen increases the impact on cancer cells. Hyperbaric oxygen therapy involves breathing pure oxygen in a pressurized environment. It saturates tissues including tumors with oxygen. This combats the hypoxic (low oxygen) conditions that tumour’s often exploit for growth. Increased oxygen levels in tumours can damage cancer cells. The research was published in PLOS ONE (2013).
So between March 2023 and August 2024 when I was fasting and my GKI was below two I attended the Kent MS Therapy Centre in Canterbury and had two separate one hour sessions of hyperbaric oxygen every day. There had to be an hour gap between each session.
One of the most fascinating things I have learned about fasting is that research by Dr Valter Longo and his team at the University of Southern California has found that after 72 hours your immune cells start regenerating. Your immune system becomes stronger and stronger. Your body is breaking down old damaged or unnecessary immune cells. Haematopoietic stem cells in the bone marrow are triggered to become active. This activation leads to the regeneration of new immune cells once normal feeding resumes, improving immune function. This research was published in Cell Stem Cell (2014).
When I am not fasting I try to eat a ketogenic diet. But I regularly fail and eat something I shouldn’t. I actually find it easier to fast than stick to a ketogenic diet. I give in to the temptation of organic oats and granola. Now 2021 me would not believe that I was beating myself up for eating these two foods but the truth is they kick me out of ketosis and move my GKI up to 20. When I am fasting after day three my GKI is at or below 0.5.
Long water-only fasting should only be done under medical supervision though, especially for people with pre-existing health conditions. However, my situation
was so bad fasting was not something that worried me. What was the other option?
But I would advise you to read up on it as much as you can before starting a long water only fast. The two books I recommend are The complete guide to fasting by Dr Jason Fung and Water Fasting by Kate McCarthy.
However something is working. My tumours continued to reduce in size after chemotherapy. In the 21 months since chemotherapy my tumours have continued to reduce in size, have not grown back and now the latest PET scan can find no eveidence of active cancer. I believe this needs explaining, I don't believe in spontaneous remissions with no explanation. In science there should be no flukes, just avenues for rewarding inquiry.
Living how my body evolved.
I like to think that to a large extent what I am doing is living in a way that is more consistent with how our human bodies evolved. We evolved eating real food, not processed food. We evolved through seasons when there were shortages in food. So I don’t eat from the time I wake up to the moment I go to sleep. I generally eat in an eight hour window, with my first meal after 12 noon and my last meal of the day being before 8 pm. I spend as much time as I can outdoors and I exercise regularly. I suspect that the changes that have been made to the way we humans tend to live and the increases in cancer and other illnesses are not unconnected. So when I am considering doing something I often ask myself "Did we evolve doing that?"
My alkaline phosphate levels and the value of information
When I was having chemotherapy, my blood was being monitored every two weeks so I would ask the chemotherapy team to print off my blood results for me. As a consequence I had a lot of data to look at.
As an example of how useful I have found this data to be, my alkaline phosphate levels have fascinated me. They are an indicator of liver disease and because my two very large tumours were in my liver I thought these were an important indicator of how I was doing. In July 2022 when my tumours in my liver were 11cm and 10cm my alkaline phosphate was at 417. It should be between 100 and 130. My alkaline phosphate is now normal and its return to acceptable levels seems to correlate very closely with the reduction in the size of my tumours. During chemotherapy treatment my tumours reduced gradually and post chemotherapy they reduced further and have then remained stable. Could it be that the fact that my alkaline phosphate has returned to normal is an indicator that my liver has regenerated?
The graph below shows the decline in my alkaline phosphatase levels between January 2022 and April 2023. In December 2024 my alkaline phosphatase level was 127
Believing I am the placebo
When my brother visited me soon after I had told him I had cancer he brought with him a book called You are the placebo by Dr Joe Dispenza. It proved to be a great motivator and remains one of my most precious books. Dr Dispenza cites many examples of people who have healed when they believed incorrectly that they were being given medicine.
Whilst I am fairly sure that a positive belief in something can help heal, I am totally convinced about the harm a negative belief can have. If you believe your health is going to deteriorate that belief will quicken its happening, of that I am sure.
My schedule
The things I have incorporated into my life would have seemed very extreme to my 2021 self. However, I didn't start off in May 2022 doing them all. I added things gradually, usually one at a time. Some things I tried I have stopped doing. I still review and update my schedule regularly. Sometimes I spend a little more time on an activity, sometimes a little less or even miss it all together. It is just a guide.
Here then are the things that have at one time or other appeared on my schedule.
REDUCE STRESS
Mindfulness
Tai-Chi
Qigong
Cold water therapy
Sauna blanket
Hot epsom salts bath
Painting outdoors
EXERCISE
Mini-trampolining
Indoor cycling
Playing golf
Walking my dog
Weights strength training
Jogging
Yoga
Stretching
DIET
No alcohol
Reduce processed food to an absolute minimum
Reduce sugar intake to an absolute minimum
Fasting combined with hyperbaric oxygen therapy
When I fast I take supplements, but only when I fast.
Ketogenic diet (I try but I give in to cravings for oats, cereals, biscuits and ice cream)
Predominantly plant-based (occasional salmon or grass fed-steak)
Intermittent fasting on the days I eat, generally eating in a six-eight hour window
Foods I eat every feeding day: Celery juice, turmeric, garlic, ginger, broccoli, cauliflower and green tea, lots of water.
In conclusion
I believe there is hope for many people diagnosed with cancer. Even for someone with stage four cancer like me.
I have radically changed my lifestyle. But after my diagnosis, radical was a very attractive alternative.
I woke my immune system up and it is now doing what it has evolved to do perfectly well.
I have no intention of it going back to sleep
I wish you all the very best.
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