I was diagnosed with Rectal Cancer in March 2011. I started to write this blog on numerous occasions but because of the constant uncertainty associated with cancer the emotions are constantly changing I found it difficult. Having been given the “all clear” in August 2012, having become extremely healthy and made all the lifestyle changes recommended to prevent a recurrence, my CT scan in 2013 told another story, I was terminal! The cancer had not gone away and now had spread to lymph nodes around the aorta, average life expectancy was 22 months and no one in the medical literature lived five years (August 2018). Twelve months of healthy living was not enough to turn things around. Like the Titanic heading for the Iceberg I needed a lot more time to change direction.
The weird thing is the last six years have possibly been the happiest of my life. It started in November 2010 just before I was diagnosed, after 9 years absense I returned to Copenhagen for Ole Wessungs 50th birthday and met up with many of my old friends where I had spent my 20s and early 30s. I know I was feeling great because i helped a friend move house and his new flat was on the fifth floor and there was no elevator.
I had always hoped I would be saying by 2020 that I was glad I got cancer because it gave me an appreciation of being alive and having good health, unfortunately it does not look like I will be around until then, although I would love to see my kids grown up I still feel the and behave as I did in my twenties, I have had a great life and I am confident I will compress more living into the time I have left than procrastinators do in their life time. My first goal is to take Molly and Isabelle to secondary school in September 2015. My second target is to take Eloise to secondary school in September 2017, after that we are going into “miracle” territory, or perhaps ignorance and prejudice territory. I have always believed I was a very unique individual so who knows and a fortune teller did tell me I would live to be 84. I hope by sharing my story I can remove some of the fear and help other over come the adversity they are about to fate. You have one short life make the most of it, you could be run over by a bus tomorrow so live every day like its your last.
I was born on the 21st of March 1957 in London. My father Peter was a bricklayer my mother Phyllis a nurse and left wing political activist. I am the father of four children, Molly and Isabelle (2003) and Eloise (2006). Then there is Frederik (1986)who some would describe as a “step son”, to me he is my first child and now my best friend. Janette is my partner and mother of the girls.
My parents sent me to two of the best boarding schools in Ireland in the 60s and 70s, this is the environment where you learn to deal with adversity and come through it with a smile on your face because you have great friends. I trained as a PE teacher in the late 70s, spent the 80s partying in Copenhagen and returned to the UK in 1991 to study chiropractic. I have practiced chiropractic in Kingston upon Thames since graduating in 1996. One of the things you are really well trained at doing at the Anglo European College of Chiropractic is being able to differentiate mechanical joint pain and dysfunction, from pathological signs and symptoms, for which you would refer the patient to their GP for further evaluation, this may be what ultimately saved my life.
My mother Phylis McGhee died as a result of Colon cancer in 1990, so I was very aware of the fact that I was in a higher risk group for this illness. A sweet tooth, late nights, and the stress of being a left wing activist probably increased her risk of developing this type of cancer and we are very similar people.
In 1998 my bowel habits altered dramatically and I had diarrhoea constantly over a three month period. My GP ordered a colonoscopy which revealed nothing and we concluded that it was irritable bowel diseases (IBS) caused by the stress of setting up a new business and my sleep patterns being messed up by a holiday in Australia. Looking back I believe this was when my cancer started at a cellular, getting the all clear from the hospital lulled me into a false sense of security and I never made the lifestyle changes I needed to make until March 2011 when I was diagnosed with stage 3 rectal cancer. I was was 53 years old, had sausage and bacon for breakfast every day, while I played tennis twice a week I did not do enough Aerobic exercise, my weight was 99Kgs .
I finished treatment in May 2012 and scans taken in Augus t2012 found no visible signs of cancer in my body, so I was “classified” as being in remission. Chemotherapy left me shattered, never the less I worked hard and turned my life around and by June 2013 I was fitter and happier than I have been for years, having completeed The Great Wall of China Marathon on the 18th of May 2013. I was doing at least an hours exercise every day, eat lots of fruit, veg and oily fish, red meat for a treat once a month, no processed meats. 70% and most of the chemo side effects of the cancer treatment have gone.
I thought I had beaten the cancer disease, now I dont see it as a disease as when Bacteria and virus are present. Despite all the money invested in trying to”cure” this illness cancer rates are increasing as we get older, one in three people are getting cancer. I believe if we all lived to be 150 everybody would eventually get cancer, its a natural process of evolution as cells mutate to adapt to chemical, physical and emotional stressors, particularly those chemical stressors that affect the air we breath, the food we eat or the medicines we take.
What I have learned cancer effects everybody differently and the treatment is far from an exact science. When your are given a prognosis its based on statistical information, on my initially diagnosis after all the tests were done in April 2011 it appeared as I was stage 2 which meant tests indicated the cancer had not spread to the lymph nodes in which case 80% of people diagnosed with this stage of cancer survive for 5 years or more. After the surgery to remove the tumor, biopsy found cancer in some lymph nodes, this meant I was in fact stage 3 and 5 year survivors drops to 50%. This is what doctors call “The scientific evidence” , what does that mean for the individual? Some will view it as them having a 50/50 chance of living five years. I took the view that five years is an average so presumably some people die after 2 years and others after 8 years and some dont die at all, so I would do what I could to heap the odds in my favor to live as long as I could. Its a bit like trying to choose a winner in a horse race. Now I am told 22 months, having thought I was clear so the original 80% and the 50/50 may be both right. Listening to a Radio interview with my mother 2 years before she died, I am no wiser about how the cancer is going to progress more than she was. Cancer treatment is a very blunt instrument of Burning, Cutting, and Poising these undifferentiated cells that have taken a life of their own that organs cant cope with. It took amphibians a million years to adapt to a changing environment of drying out water beds and become reptiles as their skins thickened allowing them to live in the new arid conditions. Humans are not that different from Romans who lived 2000 years ago, however our physiological environment is completely different and if natural selection adaptation takes 1,000,000 years perhaps the focus needs to change to whats causing cancer than trying to “cure” it.
In April 2011 as I waited with my good friend Richard Parkin for the results of the tests that would determine my future, I was terrified I might only have months to live. I was awake during the colonoscopy and knew it was cancer, I was now waiting to hear if it had spread. I told Richard Parkin if I get two more years with my kids I will be happy.I have had wonderful time and every day, month or year from now is a bonus which I am so great full for and will not waste a minute of.
I am happy to share my experience of cancer, in the hope it may make it easier for others, because in many ways the prospects of a journey into the unknown was the worst part and looking back now it does not seem that the experience was so bad and time flew by. This story is not a recipe for everybody on how to live with cancer because cancer effects people differently and I would not want to trivialise anyone else s experience, all I will say for definite is ; Its never too late to start a healthy lifestyle, dont wait for the grim reaper to knock on the door as I did.
To motivate myself to maintain this healthy lifestyle I set myself a number of goals, the first being a marathon on the great wall of China on 18th of May 2013. Doing the others was curtailed by the return of the cancer, climbing Kilimanjaro in 2015 to complete an “Iron Man” triathlon before the 2016 Olympics but I remain hopeful, it does concern me that I put so much stress on my recovering body to do they China Wall it May have contributed to the recurrence?? . Its probably Lance Armstrong’s story that motivated me to push myself so hard and my “belief” that it was his mental strength that made hims such a great cyclist. Its funny now as i recall that night in Copenhagen with a few friends discussing the allegations that Lance Armstrong took drugs. I was possibly his last defender and to prove it told everyone I would take on the Marathon challenge in 9 months to prove those of us who have survived chemotherapy could do any endurance challenge we put our minds to . Subsequent events proved he was drugged and I could do the challenge.
I would like to create awareness of a need for research into complementary interventions to orthodox cancer treatments. Most research money now goes into drugs. It was estimated that chemotherapy improved my chances by 15%, however I read regular exercise can improve those odds from anything up to 40% yet who is going to fund research into exercise, nutrition and mental strength. For thirty years now Penny Brohn Cancer Care has been prompting a healthy lifestyle for people living with cancer. I spent three days there on the “Livingwell” course in June 2011, it set me on the path I am now on and supports thousands of people with cancer, relying on charitable donations to fund this fantastic service and its there I wish to help initially.
The years leading up to the diagnosis were very stressful ( which I will go into because I believe this had a major role in my in me developing cancer, although I probably have a genetic predisposition as well) . My diet was not great, which did not help, in an effort to keep my weight down I had followed the Aitkin’s which has little fruit and lots of protein (red meat) on the plus side no sugar and lots of vegetables.
My chiropractic blog www.chiropracticlive.com had become quiet successful with about 500 readers a day and 2,000 unique visitors each week, however to maintain the quality of postings (the chiropractic regulator spent over £100,000 in legal fees trying to close it down alleging defamation), took a lot of research and effort and I would often be up until 3am blogging and then up at 8am to get the kids ready for school. Janette is a lawyer in the city and she is out the door before 7am . Sleep is very important to optimum health and I am rarely up after midnight these days.
The question I am most asked, is how did I know I had cancer? It was just a feeling similar to the one I had in 1998, however this time I was certain there was something wrong with me. In 2010 I was going to bed about 2am, and flicking channels on the TV, there was an old documentary about Bobby Moore who died from bowel cancer in the early 90s I stayed up and watched. For some reason Bobby’s comment that he did not think anything was wrong, stuck in my mind. He just felt he wanted to poo all the time. We are told by people raising money for cancer research that if Bobby had gone to his doctor as soon as he first noticed symptoms, he would be alive today. No one knows that, the medical establishment want to give the impression they understand cancer and can control it, if caught early, the truth is they dont know with any certainty. I had hardly any symptoms acted immediately and my prognosis is now the same as Bobbies and he probably did not have all the horrendous side effects from all the treatment that I had. You choose the treatment that suits you and cross your fingers.
In 2010 I taught a core stability exercise class at Esporta Gym in Kingston and during the class of December 17 I noticed I was getting tired doing the sit ups, this feeling continued into February then I lost to a guy at tennis who I felt I should have beaten but I felt short of energy. So in March 2011 I decided to go to my doctor.
For a few weeks I had been pooing three of four times a day, the stool was tapered and short and I always had the feeling there was more to come. I did not think anything was wrong, in fact the week I had decided to go I put it off because I thought I had become more regular . On inspecting my poo I noticed a tiny streak of blood on the stool, probably haemorrhoids I thought but made the appointment to be on the safe side.
My initial idea was to blog about my everyday feelings and actions in relation to the cancer however doing that required me to dwell on my decisions and doubt myself and discuss it which I did not want to do. The earth did not stop turning because I was diagnosed with cancer and I felt it was important to keep moving forward and not think about what I might have done differently. I wrote posts until Friday 8 of April when I was given the diagnosis by my Surgeon at Kingston Hospital Mr Bloom and the prognosis by my Consultant oncologist from the Royal Marsden Mr Van Ass, (appropriate name considering my condition, dont you think)
I thought I would have surgery and a few months chemotherapy and then we would go on our summer holidays so I was shocked to be told my treatment was going to take at least 12 months. This was the moment the penny dropped that I was seriously ill. I did not want to turn it into a drama that might have a depressing out come for my family and friends so I decided to keep them informed on Facebook ( which has been great fun) rather than blog and then write about the experience on the blog when treatment was finished.
In April 2012 I finished my 12th and final session of post surgery chemotherapy which began in October. The last two months were very hard felling ill and very little energy to do things, I was loosing sensation in my hands and feet which was affecting fine motor movement and balance, not to mention my willy. Looking it up on the internet it appeared one of the chemo drugs, Oxaliplatin was causing the problems and in consultation with my oncologist it was withdrawn from the last three chemotherapy treatments. In the blog I also go into detail about the surgery to remove the tumor from my rectum and lymph nodes, the colostomy and about pre surgery radiation and chemotherapy and how I and the family coped. I responded well to treatment and lifestyle changes was given the all clear in August 2012, unfortunately on the check up in the following year the cancer was back but now had spread to lymph nodes around the Aorta and was incurable. I started Chemo again in October 2013 but stopped after 4 cysles of the 12 as I was getting the same side effects as I had in 2011. in April 2014 I was given cyperknife a type of lazer radiation and then stared taking Cannabis Oil 60 grams over 6 months and have had CT scans ever three months since ( I am bound to die of cancer all the radiation I have had) which have been clear.
What does that mean, cancer cells are no actively spreading and forming tumours but you know they are there somewhere, waiting! My hope is that this blog may be helpfull to others who find themselves where I was on March 26th 2011,looking for something positive on the internet was near on impossible. People start telling a story and then nothing. I now know cancer is a very different experience for everyone especially the rest of the family and I dont want to preach or present my experience of dealing with it as being right or wrong for you, I realise, how annoying it is to hear opinionated skeptics who know little about cancer treatment preaching to people for making unorthodox choices for the treatment they want. I say that having chosen an orthodox medical approach to treating my cancer and an unorthodox approach for dealing with all the side effects of treatment.
As it turned out I remained calm through the process, my biggest fear on diagnosis was I would never laugh again (how would anything appear funny again). When you have young children you dont stay miserable for long and I have had lots of laughs and very few sleepless nights. My dad died of cancer in October 2011 aged 84 having lost the will to live, this was hard to take, when I was so determined to carry on living. I now feel confident enough to blog about my experience and my plans for the future to hopefully prevent the cancer returning.
This blog is dedicated to my mother Phylis McGhee, who has talked and advised me twenty years after her death in the TV interview she did for Irish television and radio shortly before her death in 1990, how weird is that. I have put clips from the documentary “Phylis McGhee a woman of substance” in the blog, by documenting her own experience gave me and others the strength to understand and deal with this . Then there is my school friend Ronnie Keogh who died of Leukemia in 1966 he could run like the wind but only had 9 years of life. Then there is Frederiks sister Thea who passed away in October 2012 just turned 18, after a two year battle with Leukemia, not for anything would I switch places with those parents. The staff at Kingston Hospital and the Roayal Marsden who acted swiftly and with compassion and understanding. Any efforts by politicians to dismantle the NHS should be resisted with all our efforts. I have private health care through my partners cover. I did not think my symptoms were anything serious when first went to my GP and was not in the private system initially. After the colonoscopy I thought it might be better to change into the private sector, it was made clear to me changing to private care at this stage would slow things up and the treatment would be exactly the same. If I lived in the US and did not have health insurance, I would not have received any of the care that I have received. I changed to private for the surgery so as to have my own room, as I did not want to make friends with other people with cancer. I will explain the reason behind this in the postings from the Penny Brohn Cancer centre in the summer of 2011. Yes it is 100% selfish but self preservation has governed all my decisions the last few years.
Then there is Dr David Servan Schreiber whose book “Anti Cancer – a new way of life”, empowered me to do something about my lifestyle and whose passing on July 24 2011 having kept cancer at bay for 20 years, was the low point of my year. Could you believe this man was going to be my savior, stays clear for 20 years and dies the year I get it.
Julie Sutton and Popey the Sailor Man (who were there when I started to wallow in self pity in March 2011). Last but not least I dedicate this blog to my friends and family who, gave me the space I needed and were there to laugh at my jokes and interact with me when I needed their support. Penny, Anne and Janetts family who helped with the kids when things were particularly bad in March April and May 2012.
It goes without saying Janette and the kids, strangely its probably been harder on Janette than its been for me, I get all the attention and Janette has to worry about all the possible permutations the future can bring and will only get the support she needs in the event of my passing. When we were trying to have kids and during the IVF the stress really affected our relationship, so early on I made a decision to try an keep her as distant from the process as possible. I have never understood why people have their familys sitting with them while the a receiving chemo, Five hours of small talk? Give me my Ipod and Pink Floyd every day.
Then there is John Costello, a close friend of forty years who more than anybody made me determined and not afraid of pain on the Gormanston hurling pitches in the early 70s. John called me up in 2005 asking, if I knew anything about squamous cell carcinoma. A lump had been found in the lymph nodes in his neck, the surgeon could not find the primary cause and advised John to go on holiday and the surgeon would look for the primary when John came back from holiday. This was the first time I had really researched into cancer and it did not look good, John possibly only had months to live, unless the primary was located and removed ASAP. John got another opinion from a brilliant surgeon, did not go on that holiday. He had surgery and intensive radiotherapy and chemo. He was fit and healthy, maintained his sense of humour and the prognosis was good. John had the scientific background (PhD in Marine biology) to read and understand scientific papers relating to his cancer, John was free of cancer for 9 years and in 2014, cancer returned in his brain and he passed away in September 2016. Carrying Johns coffin was one of the most harrowing experiences of my life. In May we had gone to Marbella looking for sources of cannabis oil for others as it had helped us so much and suddenly he began to deteriorate. John was a brilliant athlete footballer and hurler in 2013 we had joked , my passing would be the first race I had ever won against him and things can change so quickly without warning when you have this horrible disease
In addition to John, there is the late professor Theodore MacDonald whose funeral I attended two days before my colonoscopy. Theo was diagnosed with cancer in 2000 at one stage, given only months to live and left practically blind. He lived till February 2011 during which time he added 12 books to the 40 he had written mostly on social justice and health for the poor in the developing world. Theo was a remarkable man who I loved talking to, never judgmental and I miss asking him about all the things I dont understand about the world. I once asked him what pain meds he was taking, he did not like taking pain meds because it messed up his cognitive abilities. He said stroking his cat worked really well at relieving his pain. I took no pain meds after my surgery choosing instead kids hugging and no longer stopping them coming into our bed at night, a recent study concluded that Tramadol killed more people than Heroin so it was another wise choice I made
Having a colostomy bag for 12 months was probably the hardest part of the treatment and my daughter Isabelle has been absolutely amazing she was 7 when I was diagnosed. She told me once that she would rather have me for ten years than a boring daddy for twenty years after hearing that, I no longer feared death, I have achieved the important things in life and am determined to focus on enjoying every day of the rest of my life. My 52 year old brother in law dropped dead on the kitchen floor on Boxing day 2011 no warning no preparation, Andy’s family were not ready. I have seen young kids who have had little life struggling with cancer so perhaps I am lucky, I have had a great life, my affairs are in order, my critical illness insurance policy paid me £180,000, so I am very aware, how much easier it was to have a smile on my face without having to worry about money, which is a major stressor for most people with illness.
I have not documented the cancer treatment in chronological order, I take entries from my diary as I feel like talking about them which would eventually drive “drive” me up the Great Wall of China on May 18th 2013 and starting thw Cannabis oil in May 2014 and how I have continued to enjoy life despite the grim prognosis. I hope to put this into a book to be published in September 2017, when I take Eloise to secondary school( my second main target of life)
Yours in Health Richard Lanigan October 2016