I am a 51-year-old man, married with two boys of 21 and 17. My wife and I have been through a lot over the last 23 years together, experiencing the highs and lows of life. She has been there for me every step of the way and continues to be upbeat, loving, caring and supportive as we face this difficult challenge. My eldest son is at Loughborough University, my youngest at college doing his A levels. They are the light of my life and make me so proud as they make their way in the world. I have a sister, six years younger than me, who is married with children, a boy and a girl. She has been so supportive, acting as my guide, advisor, and councillor, providing help in any way she can. I still have my 83-year-old Dad but sadly lost my Mum 15 years ago to breast cancer. My Dad continues to go out of his way to do whatever he can to help, often making his way to my place on his beloved train network to see me and his grand kids. We all live in the same area, so I am lucky enough to see a great deal of my family.
I’m blessed to have a fantastic group of friends, most of whom I’ve known for over 30 years, some for over 40, and still see them all today, regularly. It’s so important to have them around: life would be unbearable without the constant banter, abuse, and laughter. My close pals all find their own ways to deal with me, all of them different – men aren’t the best emotional communicators sometimes. We tend to get the “how are you” conversation done as quickly as possible, and then just get on with our time together. The normality is a Godsend.
I’ve always worked, having been in the commercial side of the IT business since I was 21 years old, and had a wonderful career, working with some great companies, including my own, and with some great people. The hard work has afforded me an ok life from a financial perspective and meant I’ve been able to take out a number of insurance policies that, with hindsight, was money well spent. I’ve had a critical illness pay-out, and I have some income protection moving forward. Most importantly I have private medical insurance, so nothing is ever a problem when it comes to treatment. I’m on a number of cancer forums and my heart breaks when I see people suffering from this terrible disease, and then having to face challenges where they cannot receive the medicine they so desperately need due to financial issues.
This story and the accompanying website information, video’s and social media activity is simply an insight into how I try and live and thrive with this terrible disease, and I hope can give some help to others going through the same crap as me.
How do you try and cram what should be 30 or so years of life, into what might only be 2 or 3?
My video journey so far can be found on my YouTube channel.
My entire world changed
My entire world changed in April 2015 when, following a colonoscopy, I was told I had a cancerous tumour in my colon. I’d had no symptoms other than a few dodgy looking poos. Slightly redder tissue than normal – I just figured I’d been eating too much steak and drinking too much red wine. However, it was enough to send me to my GP who didn’t suspect anything sinister but thought it wise to check anyway. Rather glad he did.
I was in the operating theatre three weeks later and after a successful surgical procedure to remove the tumour, I was sent home to continue my life - without radiotherapy or chemotherapy (early stage cancer and clear margins!)
I may sound a little flippant here, and in hindsight, my whole attitude was perhaps a little too laid back. There is no doubt that the three weeks I spent in hospital was the worst time I’d endured in my life. This is no small procedure, it didn’t help that my bowel stopped working; I discovered this when 2 days’ worth of liquid and bile came back up rather abruptly. I ended up being fed through a drip in my neck for a week. I was a mess, being washed and cared for by my poor wife!
But despite the horrific situation, in my head the cancer was out – it was all that mattered – so I was “ok”
Sometimes I wish I had taken it more seriously – if I knew then what I know now…
Graphic and rather unpleasant detail in the video.
That summer was an interesting one; I had had an ileostomy which meant wearing a bag on my stomach for three months. I managed fairly well, learning to sit the wrong way on the toilet, eating very carefully to avoid blockages, and adjusting my golf swing on a family holiday in Portugal. The stoma was reversed, my bowel reconnected, tummy stitched up, and I was once again sent home to continue my life.
Everything went back to normal, life continued. I had my check-ups, they were all fine and I celebrated my one year all clear anniversary on August 6th, 2016. Not long after that something seemed to change. I started to have an unpleasant feeling in my bottom which became quite painful. I reported to my surgeon who hoped it was scar tissue, but following numerous scans revealed that the cancer had returned - this time in the pelvic region.
Simply devastating. My life just stopped. Again. Of the many emotions searing through my being I think anger was the most prominent. Angry at everyone and everything. How could this happen? Why me? Not easy questions to answer. I’d been told I was clear. I discovered then that there was a “less than 25% chance” of it recurring. Looking back, I think I still had my head in the sand.
"It's OK, we've caught it early."
“It’s ok”, they said, “we’ve caught it early, we can sort it out with chemo and radio, then some more surgery”
So off I went to see an oncologist. She put me on 6 weeks of daily radiotherapy with tablet form chemo plus weekly intravenous chemo. For good measure.
The first two weeks was fine – up early and into St Luke’s in Guildford, who were fantastic. Pop onto the machine, get radio’d, go home. After two weeks the radiotherapy side effects kicked in. My God, it was brutal. Literally couldn’t be more than two steps from the loo – and even then, I didn’t make it on a few occasions! The weird thing was that sometimes when you wanted to go it was like trying to pass a bowling ball. Never known pain like it. In the end my bowel got blocked it was so bad – I avoided more surgery through high doses of lactulose and gritted teeth.
It really isn’t funny cos its very very runny. Diarrhoea. Diarrhoea.
Bowel Cancer...it's a pain in the ARSE!
That ended just before Christmas 2016 and as we headed into 2017 the scan showed positive results and it was looking like surgery. Great. How exciting! This isn’t just ordinary surgery mind you. This was going to remove everything in my pelvis; bladder, prostrate, rectum. The lot. I would also need part of my sacrum removed too, just for good measure. I might not walk again. I would be weeing and pooing in bags for the rest of my life and would never again experience an orgasm!
At this point, with such a wonderful array of options ahead I thought I would take a look around for the best surgeon I could find. It turns out a boy I went to primary school with ended up in the world of oncology and my sister and his had kept in touch. After a few phone calls I had my recommendation for a renowned surgeon based out of Harley Street. Without delay we were in his office as he laid out the difficult times ahead. He spent a lot of time explaining how dire my situation was and how life changing the surgery was going to be. But first he needed to re scan me. You see, his machines are a bit more advanced than the ones id been scanned with before!
Sadly, he was right. His machines managed to pick up some “suspicious” looking nodules in my lungs. “They might just be inflammation” he reassured me. “We will need to wait for about eight weeks to see if they grow” he reassured me. Oh good. I’ll just hang around while cancer grows in my lungs, in my pelvis, and everywhere else in my body!
Trust me. Don’t get cancer. It’s not just the disease, everything in your life changes. Everything.
So, I wait, I get scanned, its cancer in the lungs.
Quite a hard word to say. Quite a hard pill to swallow. Metastases is not good in the world of cancer. It means it's spread, it means it's advanced, it means very many bad things.
I try to keep going. But how do you get up every day knowing you have advanced bowel cancer. The uncertainty of my future is palpable. It’s so bad, so painful.
Now what? Now we go back to an oncologist. There is no way they’re going to remove my entire pelvic region when it's spread. What’s the point? It’s framed in terms of making sure I have some quality of life, making sure my body isn’t weakened so much through surgery that the cancer explodes, making sure what life I have left isn’t spent pissing and shitting in bags. Which I get, as hard as is it is to comprehend.
Encore for the Oncologist
My new oncologist is fantastic. I like her, great manner, seems to know her stuff. She is clinical director at St Mark’s, a bowel cancer specialist. She’s going to help me. Chemotherapy is the way forward; not the “ChemoLite” stuff I had before, the real McCoy, full fat chemo. Twelve cycles every fortnight with a small break in the middle. The good news is that I’m “RAS wild” – it means I can also take some targeted therapy that attacks the cancer’s blood supply. Hurrah, how fortunate, “RAS wild” huh, who’d have thought it.
I won’t bore you with tails of chemo. Its bloody awful. I sit on a drip for 6 hours every fortnight being pumped full of drugs that kill your entire immune system. I then have a special chemo pump attached for a further 48 hours. It’s exhausting, but I tolerated it reasonably well – I’m guessing that might be because I’m only 50 at this point. 50. Just 50.
It might also be due to my optimistic demeanour and my positive attitude to all this! Who knows.
I tend to be a “doer”. I find it helps to keep busy, taking trips, seeing friends, playing golf, pushing myself to “be normal”. It’s something my counsellor picked me up on when I saw him in the summer of 2018. I think he found my consistent positive attitude perhaps a little false – an attempt to disguise the reality. “After all,” he said, “we are human beings, not human doings” Sometimes we just need to stop, and really focus on the here and now, and how we actually feel.
Despite the chemo and all its side effects, fatigue being a big one, I do think one’s state of mind plays a massive part. When I’m feeling mentally ok, with some sense of purpose, I seem to be able to get on with life. The minute I’m down, life slows down.
Milk Milk, lemonade. Round the corner, chocolate’s made
Bowel Cancer...it's a pain in the ARSE!
The scans in July 2017 showed that I was responding to the chemo, so good news. I’d been on a lad’s golf trip in the May and we had a family holiday in Spain in August after which I got back on the drip. We were gearing up for the next six cycles still with the objective of ridding my lungs of cancer and then possibly back to surgery. Still hoping for a cure. November scan.
Had everything disappeared?
It was good – virtually everything had disappeared. Wow. How good is that. Still lots of caveats about the likely-hood of the cancer being there, but hey, happy to take this result. However, no surgery as the experts wanted to wait. To be sure.
The only thing that came out of the blue was that I had a pulmonary embolism. Can you believe it! So, I was straight into hospital where I was given a bunch of injections and handed a box full of syringes, so I could self-inject a blood thinner every day. It also meant I couldn’t fly. Great. I’d had a ski trip planned with my boys– it’s all I wanted to do. I’d planned to go since i figured I’d be having surgery and therefore would be unlikely to be able to ski again. Ever....
So, we carried on trying to live a “normal” life, waiting for the next scan to see if the cancer had really gone.
Not the only one ill
February scan. Results on March 5th, 2018. We drove to meet my oncologist to hear the news. It’s a fair way, round the M25, which is never great in rush hour. After 10 minutes of reading the out of date Hello magazine we were told she was ill and not coming to work. Can you imagine?
This is unbearable.
My life now operates on 3-month cycles, everything I do psychologically is geared up for the chemo, the scan, the result, the next plan. As I approach the scan the anxiety levels increase.
The timing between scan and result is crucial. It has to be known, it has to be solid, any deviation from the plan is heart attack material. The mind is a powerful and mischievous thing – and my God does it like to play with me at scan time.
So, a sick oncologist was not cool at this point!
We left. We rang various secretaries and managed to get an appointment later in London to see the radiologist. He is the person that interprets the scan for the surgeon and oncologist. He is very important. We had met him previously and he was very professional. We met him on this day. It was different. I now know why the oncologist should give scan news. My oncologist had some training on this. I’m not sure the radiologist had the training!
I walked out of there with one thing going around and round in my head “go home and get your affairs in order”. I’d gone from cured to incurable in fifteen minutes. The cancer in the lungs was back. 19 nodules of various sizes. Incurable. Fuck.
My oncologist called the next day, same prognosis, slightly better delivery. “it’s not months, it’s years” What does that mean for fucks sake? How many exactly? 2 or 10? “I hope to be talking to you in two years” Bloody marvellous.
I cannot begin to explain what this news does to a person. It is impossible to comprehend. The human brain just cannot fathom the magnitude of dealing with one’s own mortality, at least not for some time, and even then I’m not sure we ever really accept it. Everything you are, have been, believe in, love, and care for is going to end. Sooner than you imagined. Sure, we all know we’re going to die at some point, but when it’s at your door, when you’re just 50, it’s a living nightmare.
What do you say to the boys you love so dearly? Every instinct you have is to protect them, you spend your whole life trying to shield them from bad stuff. How do I cope with the possibility of not seeing them graduate, fall in love, get married, have their own children?
I can’t speak for everyone, but I tried to get busy, get reading, trying to generate some form of positivity. How do you escape, even for a moment? I think this is why I do as much as I can – it’s like I’m constantly striving for something to enjoy. Most people book a holiday and have it to look forward to. For me a movie on TV, a nice meal, a golf lesson. Anything. Mustering every ounce, I had to somehow find a way to see through the darkness, to find some light at the end of a very long and treacherous tunnel. I created a plan, set some goals, I guess I just found some comfort in doing what have done in my entire working life.
A lot of what I’ve been doing you can find here
It was at this point I found The Mulberry Centre. www.themulberrycentre.co.uk They were unbelievable, picking me up off the floor and showing me the first steps on the journey of coping. “Look at the clock. It is ten past two on Thursday and right now you are ok. You look fine, you feel fine, life is ok”
A quick lesson on the importance of living in the present.
Create memories? – we took a family holiday to Thailand, a trip my wife has dreamed of doing for years. How hard was that – while the surroundings are pleasant, you cannot escape the pain. Every special moment you spend; swimming with my boys, dinner on the beach with friends and family, visiting a monk, learning to cook Thai food – all feels like it might be the last time you’re doing it.
Work or not to work, that is the question. I’ve made the decision to spend my energy in trying to heal and spending as much time as I can with my family and friends, avoiding stress wherever possible.
I have to say, my employer, Capgemini, has been amazing. The most caring and ethical company I could have hoped for. Since I was first diagnosed, they have been incredibly supportive throughout the entire journey, helping me not only manage my time to suit my challenging needs, but also providing real personal support whenever I have needed it.
Chemo started again in April 2018, another six cycles, same drugs. This time I was on an anticancer diet and taking multiple supplements courtesy of the fantastic Chris Woollams at CANCERactive. www.canceractive.com They are my bible for an integrative approach to healing.
An anti-cancer diet sounds easy. Not for me, not for most people I’m sure. No sugar, no red meat, no wheat, no dairy, no alcohol. My entire social life is based upon eating and drinking. It’s my favourite thing to do! Worst of all, no “evidence” that this incredible hardship will have any effect whatsoever. Oncologist’s don’t train in nutrition.
Scan in July 2018. Chemo working again, nodules have shrunk or disappeared; better than expected. Good news, the hard work is actually having an effect. Summer off, and boy did I have a good summer. The diet took a bit of a hit although I was in Greece for a family holiday and a Mediterranean diet is the best you can have – it was the booze that let me down. I had my own “closing party“ in Ibiza with some pals, being looked after by a dear old school friend who just happens to own a beach club and a hotel on the White Isle.
Back to square one
Scan in September 2018. Not so good news. Lung disease progression – 30 nodules, some have doubled in size. On the upside, the pelvic area is stable and there is no new disease. As a result, my oncologist has changed the drugs. Back down to earth with a bump. A big reality-check. It feels like I’m back to square one. New chemo regime means the old one is not producing the desired outcome. It’s an option gone, it’s a step closer to death. Fuck.
Started the new regime of six cycles on September 26th. Was very scared in case I reacted badly – that would wipe out another option! However, so far so good. Aside from the standard side effects of having your body decimated by drugs, I get something called First Bite Syndrome – every time I put food in my mouth for the first time my saliva glands go crazy and cause a burning sensation in the jaw.
To add to the pain, the day before my chemo started, we buried my wife’s Auntie. A very special lady not only to her, but also to my boys. Lung cancer. She’s been battling since November 2017. You cannot imagine how hard this has been to deal with. For me, I cannot escape the feeling that “I’m next” That I will soon be lying in a hospice, that I will be carried into a crematorium, as I carried her. That people will be toasting me at my wake. It made everything seem very real. For my wife having to grieve, and somehow cope with a husband with cancer. How can she show the love and care I think I need while hurting so badly herself? I fear for my boy’s wellbeing – how will this affect them long term? Not only dealing with the terrible situation but feeling the effects of the tension that surrounds us. It’s not easy.
How do the relationships work now?
Cancer changes you, its unavoidable. I see the world through a new lens, with a different perspective on life. Some of it bad. But some of it good too.
Therefore, relationships inevitably change. Roles change. I’ve gone from being the provider, supporter, advisor, carer, to almost the opposite. My wife needs to look after me (more!), my boys now worry about me, I’m less of the “big brother” to my sister, and my Dad faces burying a child.
The dynamics have changed.
No one wants to burden me with their problems.
How do you argue with someone in my position? Is my opinion more important because I’ve got cancer? Its tough. The strain on our little family is immense, and I see this as something I need to resolve.
And so, I pick myself up, take a deep breath, and I go again.
And try to live my life, with as much enjoyment as possible
Need a break
Completed my fourth cycle so now headed for the finish line and the fun of the next scan. I’m taking a break from being super strict, just finding my way through, and trying to enjoy the moments I can.
I’m in touch with a Buddhist guru in Nepal – I might go and visit next year – could be helpful…
It is difficult to find adjectives that do justice to the turmoil in my life during September October, November and December of 2018. Life has been tough enough for our family while dealing with my situation, but when you consider the emotional challenges created through the death of someone so important to our family, our lives have become almost unbearable.
Sophie does a fantastic job of putting on a brave face, sometimes to her detriment. While Val was ill, she spent every moment she had to be with her while trying to hold it together for us as a family; she had no time for friends or socialising as all her energy was taken up caring for someone she loved so dearly.
Relationships become interesting; sometimes the people you expect to be there, just seem to disappear, and those you never expected to step up, deliver the support, tolerance, patience, and compassion you need, holding no expectations other than pure friendship and love for you
I can’t imagine how tough this is for her and I am grateful for her continued support. That is not to say we have not had a difficult time over these months, I would say some of our most challenging as our emotions have boiled over on a regular basis, trying to deal with the grief and sadness. But through a deep desire not to let this situation tear us apart, we have come through the other side and are closer than ever.
I seem to be tolerating this chemo reasonably well so far, although the neuropathy seems to be building – it’s really weird. I can’t touch anything cold without my hands going in to a sort of cramp – maybe arthritis is like this, it’s really weird? I was holding a cold can of drink the other day – after a few minutes, my hand froze – I couldn’t move it! I also get sinus problems now, it can be quite painful – apparently its related to the same part of the nervous system that the drugs attack.
We celebrate my boy’s birthdays – the big 21 for Oliver, and Charlie’s 17th – so he can now drive! Scary stuff. Any events like these are so important now – I have all their important birthdays and milestones mapped out. Moments I need to be alive for.
After pleading with my lovely oncologist (about time I gave her a name - Nicola), I managed to get a week off between cycle 3 and 4 as we planned on going to Cowes for the week. It ended up being a weekend, but we had a great time. Despite the crappy weather (Force 5/6), I managed to take my boat across to Cowes. I’ve never seen my pal Jon look so terrified as we headed out of Portsmouth Harbour; “are you really sure you want to do this?” he repeated, about 6 times! It was a little lively, and totally exhilarating; you really know you are living. At one-point we were cruising beside the ferry that our friends were on, including Sophie – we got some great video footage.
I met with Nicola at the end of November because she had been testing me for a couple of things; do I have the hereditary gene and is my cancer applicable for the latest bowel cancer immunotherapy, Nivolumab. Another reality check – Nivolumab won’t work. This is pretty shit. It rules out another potential option. I’ve already exhausted one option now. I guess I’ve got to hope I can keep going long enough for them to find something that will work! To be fair, although immunotherapy is hailed as the paradigm shift in western treatment for cancer, it still only has had limited results so far…
I don’t have the hereditary gene – which I knew already but wanted to make doubly sure. Still, good to know given the ramifications this has for my boys. Whatever happens though, they will need to get themselves screened earlier than normal. A friend of mine who had it in the family started aged 40.
“… for better, for worse,
in sickness and in health…”
Chemo cycles 5 and 6 always seem to feel worse – there is a cumulative effect, and this seems to affect my mood. I keep going, trying to be positive but I’m feeling lost. I’m missing work, missing the routine, the purpose, the reason to get out of bed in the morning. I really didn’t think this would happen – you sometimes dream about not working, the ultimate goal; the reality is not all it’s cracked up to be. This is when I start to think about what I can do to give my brain occupied. Giving something back somehow is an obvious one, maybe I could share my story and try to help other people that might be struggling – and so I finally got around to building the website. There was only one snag, I can’t build websites! So, I turned to a man who can, Ian Stone, Sand Dog Design. It was a difficult phone call; I don’t like asking for charity, but Stoney was a true gentleman, and has really stepped up, designing and building the site for me. I can’t thank him enough.
As I put the words down, trying to make sense of it all I am filled with trepidation and anxiety – I’m a really private person. I have Facebook but never really do much on it. I hate people knowing my business. And I’m thinking about exposing my thoughts and experiences to the great unknown? But if I could help just one person? Has to be worth it, doesn’t it?
The first stage of this started on December 1st when I signed up for Bowel Cancer UK’s Decembeard challenge. Fairly self-explanatory – grow a beard, no shaving until January. I put it out to Facebook, as did Sophie and I have to say I’ve been overwhelmed by the response, we’ve already raised over £2000. Thank you so much.
At the same time the toughest moment of my three-month cycle looms – the scan. I simply cannot describe how this feels – it really is a life or death moment, every bloody time. I wish I could shut my mind off – remove it for a few weeks – or train it somehow? Maybe I’ll head East and learn to meditate!
Nicola was a bit surprised I wanted it done before Christmas – she said most people preferred to wait. I get that, but I have a few ideas and possible travel plans for the New Year, so I’d rather get it done, good or bad. CT on Monday 17th December and an appointment with Nicola on Friday 21st.
I’m busy doing nothing on the Wednesday when my mobile rings – I miss the call but recognise the number – it’s the Radiologist. I basically crap myself – this can’t be good. I try and call back, voicemail. Don’t panic Mr Mainwaring! My phone goes again, and I pick up. Its Magda, the secretary. She tells me the scan was good! Nodules have shrunk! Wow. The relief. This is not normal protocol so I will see go and see Nicola. I’m a sceptical bugger. What if she got it wrong? Picked up someone else’s results? I need to see Nicola before I get too pleased with myself.
Me and my entourage (wife and sister) get round the M25 to St Marks to see Nicola. Magda didn’t get it wrong; nodules have shrunk, pelvic area stable and no new disease. Happy days. It’s important because this is a new set of drugs – demonstrates they are working. I have to hope they do a better job of putting the cancer to sleep though. This is just what I needed – good news before Christmas and a break from Chemo – it also means I can do the trip I had planned to seek out some Eastern wisdom in Nepal.
But first another very important event to manage. The tattoo. Let me just say I am not a tattoo person. Never had one. However, given the circumstances I find myself in, I am willing to make an exception, particularly when my son has designed something that has such great sentimental value.
When my boys were little, we would always watch The Jungle Book together, normally on the 5am stint when they were babies. So we created a design of Baloo and two Mowgli’s dancing off together, in silhouette, and now we have a great image that my boys and I will have tattooed on our backs. Together forever.
It bloody hurt. Oliver was all cool about it. Trust me, it hurt. We got them done on the Thursday, in Fulham, and celebrated with a pint in my old stomping ground, The White Horse, in Parsons Green. Charlie will have to wait until he is 18 – looking forward to that!
I’m really struggling with the diet. The last scan really knocked me. I’m just thinking “what’s the point, its cancer, nothing can help, who am I kidding?” It’s not helpful thinking – but I really struggle with the terrible dichotomy I have in my life; quantity vs quality. Can I have both? Quality to me equals drinking alcohol and eating “nice” food. Quantity means being a Saint. I’ve never managed to equate good times with healthy living. I’ve settled into a kind of 70:30 way of life – I am mostly good, but I just can’t seem to abstain from the food and drink I like. It should be easy, a no brainer, cancer feeds off sugar – so no sugar then? I just find it so hard, and after the knock at the last scan, I’m questioning everything.
I felt so good when I was being strict. I need to try and change my thinking.
And so, Christmas approaches. Funny time of year for my family. It will be the first one without Val. I wonder if it will be my last.
The break is nice and relaxed – we spend Christmas Day at my sisters with my family, and we host at ours on Boxing Day. Sophie’s family are in France so not with us this year. It passed without a hitch, obviously emotional due to Val being deeply missed, and also because my Mum passed away on Boxing Day. I still miss her so much.
We managed to spend a night away with friends, boys playing golf, girls… not sure what they did actually. Just nice to get away. And then New Year’s Eve – the usual aggro working out what to do but we had a great time; Vinyl Party. Fancy dress. The theme? You had to dress up as the title or artist of the record that you had to bring along! Everyone made an effort; I dressed as a large strawberry. I was a Juicy Fruit. Mtume.
Now I have a break and I want to make the most of it. I start to put a not very well thought out plan into action – go to Nepal and live in a Buddhist Monastery with a Monk. I have the Monks’ name – he is happy to host me. That’s all I know. I just want to see what I can find, and let my instincts take me. I figure that learning how to be calm, really calm, will help my body to heal. I book a flight on 7th January to Kathmandu, and a return 4 weeks later. This is so unlike me. I’m a control freak for God’s sake.
As time draws nearer the enormity of what I’m about to do sinks in. I don’t even know where this place is. I have no idea what to pack! I’ve not really thought about illness – I’m not on chemo, but the last one was only two weeks ago. There could be a risk? I’ll be alright won’t I? Won’t I?
I have know idea what to pack!
Kindness & Compassion in Kathmandu
“What the hell am I doing”, “what on earth was I thinking” the thoughts just keep repeating over and over as I try and get some overdue shut-eye while trying to get comfortable in an Airbus A320 at 35,000 feet. I’m on the second leg of my journey, on a Qatar Air flight from Doha to Kathmandu.
I don’t even know where I’m staying – it’s a monastery somewhere in Kathmandu. My host is a Tibetan Buddhist Monk. He’s a Lama, a Teacher, a Guru. I’m not even sure how long I’m welcome for – maybe a week.
Beyond that I don’t have a plan.
I’m also filled with trepidation and an overwhelming feeling of guilt. The trip is going to be expensive. I’m leaving my family for over a month. To achieve what exactly? Explore the world, sure, but how can this help me heal my cancer?
Hard to describe – when I walked out of the airport it felt like I had arrived in a very large ski resort somewhere in Asia – its high up, its cold, there are mountains. But that’s where the similarities end; Kathmandu is vibrant, chaotic, and colourful. Loud, dirty, and poor. It simply overwhelms the senses. It feels like there are a hundred taxi drivers for every tourist, there are more stray dogs per square metre than Battersea Dogs home, not a single traffic light, and roads that go from tarmac to rubble to dirt and back again, in seconds; inhabited by cars, buses, motorbikes, bicycles, people, cows, goats and dogs. Its fantastic. Everywhere there are people selling something, anything! The streets are lined with hole in the wall cafés serving sweet tea, Momo’s and the national dish Dal Bhat. There are endless piles of fruit and veg along the roadside next to tables with all manner of clothing, surrounded in many places by the native monkeys that roam certain areas of the city. It’s like nothing I’ve ever seen or felt. And I love it.
After 20 minutes of avoiding the taxi drivers and the gaze of the airport policeman I started to fear the worse; its all a scam, there is no Buddhist Monk, and I’m about to be kidnapped by the local Maoists!
And then I saw him. His red and orange robes flowing, a beanie hat to keep his shaved head warm, and a smile that could only emanate from someone that knows true happiness. He greeted me with a white scarf, a Buddhist tradition, and it took every ounce of determination not to burst into tears – the pent-up emotion just wanted to escape, and trust me, it did many times during the next four weeks.
His monastery was in a suburb called Shwayambu, about twenty minutes from the city centre. It’s basic. Very basic. There is no heating, limited lighting and the water is heated via an individual immersion heater. The Guru’s sister cooks for us, using vegetables grown in the garden, our meals consisting of rice, a daal, and a vegetable, accompanied by hot water to wash it down.
Everywhere We Go...People Want to Know
The monastery has a “gompa”; a place in which Buddhists carry out their worship, prayer, and meditation. The Guru teaches here every Saturday, supported by the two resident Monks. It’s a humbling place, peaceful, yet powerful on a spiritual level.
I am taught to meditate the “Tibetan” way and discuss my illness and the meaning of life. We explore the beautiful Buddhist landmarks, and I am invited to witness a ceremony to anoint a senior Lama at the incredible Stupa in Boudhanath. One of my favourite memories is of myself and three monks squashed into a Fiat Panda battling through the dawn traffic to get to this ceremony. Surreal.
Everywhere we go The Guru is approached by so many people. He is so well liked, so revered, so respected. It’s like accompanying a major celebrity around London, but this celebrity has some real meaning and value to bring to people and their lives
My entire time with The Guru brings a spiritual presence that I’ve never experienced in being with another person before. Only with hindsight do I realise how special and privileged I’ve been to share these moments with him.
And I’m feeling a little calmer
Plans are starting to form in my head. I came to find a little Eastern promise and I’m keen to immerse myself as much as possible. So, I’m going to go a step further, and decide to book myself on a six-day meditation course at The Kopan Monastery.
But first I need some heat. I’ve been going to bed at 7pm so I can clamber under two duvets in order to create some warmth. I want to get closer to the mountains too, and to feel the sun on my face. While in Kathmandu I am helped by a friend of the Guru, Arun, also related to the owner of my local Nepalese restaurant; the place where we made our original plans for this trip. He happens to own a company specialising in trekking tours and is kind enough to help me with my travel plans. His advice is to visit Pokhara, so off I go, into the unknown, courtesy of a very small propeller plane operated by Buddha Air. That’s the same Buddha Air that crashed a plane on a similar route a few years earlier. According to my Lonely Planet guidebook; “air disasters are not uncommon in Nepal”. Terrific.
Pokhara is 200m lower that Kathmandu, and therefore warmer. I’m staying in a nice hotel which requires arrival by canoe since it’s on an island on a lake. My room has heating, a shower, and a mattress more than an inch thick. I’m very happy.
I’m on my own now so I organise to take in a few sights while I’m here, visiting the Mountain Museum, The Peace Temple, and the amazing Gurkha Museum (The Gurkha’s are still actively recruited and trained in Pokhara). But the most incredible sight by far came from the 5 am trip to Sarangkot to witness the sunrise over the Himalayas. Stunning. So peaceful. Just me and 100 Chinese tourists with very large camera’s and tripods!!
The twenty-minute flight back arrived without the need to “brace, brace”, the time passing pleasantly, particularly when discovering the lady sat next to me was returning to their hotel to wait for her husband, who was busy training the new Gurkha recruits. They were then flying home. To Aldershot - a base for the British Gurkha’s. It was at the Aldershot Buddhist Temple that I made the connections with the Lama that I was now staying with. Small world.
“Eerrm, so you want my phone? No electronics allowed? No Wi-Fi? No internet? No outside contact?” As the Monk at “check in” takes my electronics and my passport, I’m escorted though the grounds of Kopan Monastery to my room. Back to basics. No heat, immersion shower, single bed, a small wardrobe and a bin.
This is the real deal. This is what I came for. It’s amazing, for reasons I could have never imagined. I’m learning to meditate, for six days while also gaining an understanding of Buddhism. It’s a subject I know a little about, but this education is really eye-opening.
Making the World a Better Place
The bell rings at 06:30 and the group of approximately forty students congregate in the large Gompa. We are a mix of ages, races, colours and creeds from all over the planet. Our teacher, a sixty-year-old Australian born, robe wearing, shaven headed, Buddhist Nun is simply wonderful. She teaches with such passion, wisdom, and humour, it is impossible to feel anything but love and compassion for her, regardless of whether you subscribe to her beliefs. Which, to be fair, make a great deal of sense, and frankly offer a way of life that if we all followed would no doubt make the world a better place to live.
There are four breaks during the day for breakfast, lunch, tea, and dinner, which are all taken communally in a dining hall, at which we help ourselves to a very functional diet of porridge, rice and vegetables, a form of bread, and sweet tea and hot water. I’m wondering how much weight I’m going to lose on this extremely healthy food regime.
Silence is Golden
Silence is golden, as the saying goes. And its true. Every day we are in silence from 10pm until after lunch the following day with the last two days being in total silence. This is strange. Try sitting at a table with five others eating a meal, and not uttering a word. It’s harder than you think, but in some ways very rewarding.
I spend the daylight breaks with my face in the sun, reptilian like, trying to warm myself enough to last through the hours of dark. My favourite spot is next to the water feature, listening to the comforting sound of water falling, and watching the birds take their morning showers. The view is spectacular, taking in the entire sprawl of Kathmandu, where one can view many of the Stupas dotted around the city. Its only interruption is to witness the beautiful eagles, circling high above, looking for their prey amongst the vast areas of woodland on the hillsides, the setting in which sits this beautiful working Monastery, bustling with its three hundred monks.
What I didn’t expect was how uplifting it is to return to a simple way of living, of becoming a Human Being again rather than a Human Doing. Leaving the phone, Wi-Fi and social media behind is a revelation. I started to appreciate the simple things again; the sound of water, the birds vying for space in a fountain, eagles soaring, the warmth of the sun. Nature. All I had to concern myself with was heat and food. Nothing else really mattered, nothing else was that important. It was truly liberating. I have not felt this good…
… I can’t remember
Snap Back to Reality, Oh There Goes Gravity
Sadly, the time has come to leave this amazing country which has afforded me such kindness and compassion, in such a short time. The people I have met have all moved me emotionally in ways I could have never imagined, and I will be forever grateful for the time I have spent with them.
My desire to feel some real heat has not abated, and my last leg of the journey is taking me to Goa, 30 degrees, and somewhat hypocritically, a luxury resort in which to relax and reflect.
A simple flight to Mumbai, and a second flight to Goa should be easy. Plenty of time to connect, I’m told I don’t even need to leave the terminal. Famous last words.
Admittedly it probably didn’t help that I had purchased two Gurkha knives (Khurkuri). So, when security refused to give me entry to the domestic terminal, I probably should have known this part of the journey may be a bit more challenging. Although to be fair, I’ve never been to an airport that screens your bags before letting you in the building. To add to the problems my paper ticket for some reason didn’t have my name on it. Another reason for refusing entry. I had to pay to get my ticket printed at the outside airline booth, while six surly security guards stared at me while pointing to a screen with an image of my bag revealing two very large knives.
You see the knives were important to me. I bought them for my two boys. One each. Firstly, as a symbol of courage, in line with the Gurkha motto, to take forward into their lives, which might be without their father there to help them. And secondly to recognise the importance of brotherhood. The Gurkha insignia is two crossed Khurkuri, and so together they form an unbreakable bond that needs to ensure my boys will always look out for each other – no matter what.
Luckily, Head of Security understood they were souvenirs, rather than weapons of mass destruction, and finally let me in to the airport!
And I’m glad he did. I arrived at The Taj Exotica Resort sometime after midnight, weary from the journey, and could not have been happier to receive a welcome drink, a hot towel, a very quick check in, and a large cosy bed.
The Journey Home
The week was everything I had expected, and more. The sun shone every day and I was submerged in luxury for an entire week, drinking fine wine and eating beautifully cooked local seafood. But I missed the simplicity of the monastery. I missed the happiness I had felt while only worrying about food and shelter. I miss the birds vying for space in the water fountain, and the eagles soaring high in the hazy sky over Kathmandu. I also missed my family, my friends, my home. This is the longest I’ve ever been away, and it’s starting to take its toll. It’s not that I’m bored or lonely, I’m good in my own company, but this just feels like a holiday and something I should be sharing with my wife and kids. It’s a bit weird being on my own, mainly surrounded by elderly couples and families. I watch them and wonder if I’ll be around to enjoy being old, to travel with my wife to exotic places and reminisce about our lives and the journey we’ve had together. To have seen my boys grow into men, to be married, to become fathers, to be working and finding their way in the world. God, I hope so. I’d give anything to be in that position.
And so my journey comes to an end. After a night in a dull business style hotel in Mumbai, I board the 10-hour BA flight to Heathrow. It’s a pleasant flight, and I manage to get some sleep in between the movies.
I reflect on what I have learnt, and the overwhelming lesson for me is not that remarkable, or new. It is simply that love and kindness is everything; people and relationships are more important than anything material; that peace and happiness comes from within; that one’s mind is powerful enough to drive any outcome you want it to, and that faith or hope or belief can change it all.
Like most of us, we could simply read this in a book, or on the numerous social media platforms via the many “life affirming” apps. The difference is that I felt this. I lived it. I experienced it. Will it make a difference to my cancer? Maybe, maybe not, and I’m not sure it matters. I feel like a better person for my experience, a little calmer, and a little wiser; life is short, quality of life means everything, be present, and make every second count.
And then the moment I’ve been looking forward to for so long happens as I walk through the arrival’s doors and into the arms of Sophie, Oliver, and Charlie. My family, and the most important thing of all.
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Please help Matt in fighting this shit disease. Excuse the pun!