Four years on

Reflecting on my experience over the last four years on.

So August 2019, doing the Baviaans, 24hr, 230km mountain bike ride from Willowmore to Jeffreys Bay with Amanda, Joy and Linda was inevitably going to be a glorious event. Having done it before I knew what to expect. The beauty of the Baviaans Kloof, unmatched comraderie, some fun, some vasbyt and the exhilaration of the night ride and the finish in Jeffreys. All started well and soon we were barrelling down the dirt road into the Baviaans Kloof. Much of the first 100 odd kms is relatively rutted and flattish, giving the illusion that speed is your friend. Experience has shown that measured pace is wiser for this stretch. Then comes the climbing out of the Baviaans and into the sunset. A most memorable moment is always looking back into the Kloof to view the bright orange reflection of the sun setting against the rutted rocky crags. Soon it’ night fall. Here’s where my surprise began. I began cramping like I had never done before. Eventually, some five or six hours later, many stops, kindly and patient support from my team of angels and a good dose of magical narcotics, we arrived in Jeffreys Bay at around 3am. Exhilarated but knowing that something was wrong as the cramp settled into continuous pain in my lower back. Well I visited physios, Chiro’s, GPs and all the rest. At worst some R and R or worst of all a back op. Me, never, after-all I was strong, fit and healthy.

After some investigation and near exasperation, a wise Doctor friend told me not to be an idiot and to have an MRI. This I did in Feb020, only to discover that I had Non Hodgkin lymphoma. (In my case a cancerous tumour had developed on my spine and was restricting the nerve, hence the pain). This is a really treatable condition and an expected 6 weeks of chemo would do the trick. Long story short, the treatment went well. It’s definitely not aspirational but chin up and manageable. Problem was that I went against the statistics and required a series of ever stronger chemo blasts and some radiation over the next 8 months. Not lekker. Not lekker for me but friends and family really took the brunt. Oh and this was in Covid times so isolation in the ward felt particularly lonely. What followed was a stem cell transplant, some complications, a bit of time in ICU, some scares, lots of infections, a broken hip, a hip replacement and a back op on the spine. Again not aspirational but heh it’s done.

Most notably, I must acknowledge the incredible medical and personal support from the medical fraternity. That includes doctors, physios, radiologists, pathologists, nurses, carers, waitrons, cleaners, porters and other hospital staff. I remain eternally grateful for their professionalism and care. Equally the love and support from friends and family was unparalleled. During the worst of it, I was aware and comforted by this incredible love and caring but I suspect I was coping physically more than being emotionally present. In fact I know that Laura was incredibly moved when after some months in hospital, I first enquired about her wellbeing. I suspect this was the time when I began,in the words of a favourite band, Pink Floyd, “coming back to life”.

Eventually, I was able to leave the hospital. That was special. An incredible relief for the hospital staff and Laura. Here’s when I really, really became aware of the support I have. This is also the first time I began hearing that I’d narrowly avoided stepping off this earth we share. When asked if I experienced any divine epiphany, I would reply that I had not. Never thought of that when I was “burned and broken” (another Pink Floyd reference). I would be lying if I said I did it for my family. I don’t even think I did it for me. I really think I just did it. I was just there and thanks to medical science and my privileged me I snuck through. I was lucky and had incredible support that I was at best aware of and without which the whole ordeal would have been far worse. I am extremely grateful for my almost complete recovery. Unable to work, I have had much time to contemplate about love, life, purpose and everything else. While I do not wish to diminish the incredible ability for the body to heal, the love and deep caring I have from family and friends has unquestionably made the journey easier. My primary support once out of hospital is Laura. She lovingly cajoled and sometimes coerced, listened, sympathised and supported in a way that only she could. Where she found the strength is beyond me but I do know that family and a few friends just got it right. I am eternally grateful for this too.

 

What helped me during the journey?

The following 5 ideas really helped me during the worst of times.

1.     It is not personal. It simply is! As I humorously used to say “Ït are what it are”.

2.     Trust your doctors. If you don’t trust your doctors change your doctors. This is essential for my and my supporters’ peace of mind.

3.     Do not Google. I am not a medical specialist and Googling has the almost certain risk of misinterpretation, misunderstanding, misdiagnosis and the consequent chasing down rabbit holes and inevitable panic.

4.     Own how you feel. We live our lives nominally and not relatively. The fact that another person is worse off than me does not necessarily mean that I am OK.

5.     I refuse have a shit day. Owning how I feel is empowering to the extent that it enables me to take control and manage how I respond. In this regard I decided that I was not prepared to have a shit day. This allowed me to find some pleasure, interest and entertainment from the environment around me.

There were many really tough moments during the journey.  Nightmares, helplessness, some fear, but I truly do not remember these very well. One awful moment is seeing friends through my isolation window crying at what was obviously my sorry looking state and not being able to comfort them. I do however remember the kindness and support of everyone.

A few amusing moments come to mind as I write this note. One day during a chemo infusion, the 20 odd year partnership of two incredible nurses became evident when each would simply mutter some frustration and the other respond with the very tool of the trade required in that moment. Both ladies are deservedly and I trust happily retired after an incredibly serving career. Another memory is of a time when I was heavily sedated to negate pain and Ina, a wonderful doctor, asked how I was doing. In my stupor I recalled that she was looking for a home to purchase in the neighbourhood I live in. Trying to be useful I had identified a potential property and attempted to communicate my sense of its fair value and my calculation of this. This involved explaining the asset capitalisation formula typically used in property valuations (simply capitalise the net estimated rental flow by the “rule of thumb” 6%). While my rationale was clear as daylight in my mind, the expression thereof didn’t go well. My incoherent mumbling was however  kindly acknowledged. Months later when I raised this conversation with the good doctor, we simply laughed. Then there was the time when I saw a bird moving along the wall of the hospital. This turned out to be a shadow moving as the sun moved. I had watched it for some time when a rather shocked friend carefully brought me to reality by saying she thought it was a shadow. And many more…

Why am I well again?

Off course it’s been a less than aspirational journey! I sometimes ask myself why I am such a lucky guy?

Medical support. Medical science and the timely support of medical carers is undoubtedly central to my recovery. The ever present professional support and care of all concerned was as best you can imagine. It is foolish to say it was the best possible but I am certain there is no better.

My primary supporter, Laura. This was a helluva journey for Laura to put it mildly. My love and gratitude to her is absolute. This unwavering support is not new but was revealed in the most beautiful way possible. She just got it right, always. 35 years of marriage to be continued with great respect love and gusto.

My immediate family’s support. Andrew and Brittany have been an incredible support to me and to Laura. I am so grateful for this and the adults they are. Then there are Brittany and Andrew’s chosen partners. They too are incredible.

Concentric circles of family, friends and acquaintances, cycling groups, business associates, school and university alumni. Shite, even strangers. Everyone’s love kindness and support has been wonderful in every way. I am hugely grateful for this. I have a special golden gratitude for the people that provided Laura with support during this time. They just got her and how she was to be best supported. Gratitudes and thanks to all!

Me. I find it difficult to acknowledge. I am just me. I was just being me. I am grateful for my faculties and how they allow me to live, love, laugh and languish in life.

Unearned life privileges of birth-right, family, education, acumen, access to incredible medical aid and the many opportunities afforded me. Apropos this, I believe that my privilege comes with no rights and a number of obligations. I believe I am obliged to live according to my values. I feel obliged to ensure that I am okay and that all I interact with are positively affected by my association. This applies most strongly to those closest to me but wish to have a positive impact on my wider community where I can without compromising my own family.

Health and fitness. I love exercise and particularly in the outdoors and am fortunate to have extraordinanarily suitable DNA. As a result I have always been fit, strong and healthy. I know that fitness may not be the key to living longer but I am absolutely certain that it allows you to live better. I will not be persuaded differently. I recognise that regular and consistent physical exercise is not easy for some people but I so wish more people experienced the joy and benefits that I enjoy.

Friendships. I value each and every friendship absolutely. I love the banter and support and am eternally grateful for the support I have always received. I am certain that these friendships have added enormously to my wonderful life.

Attitude. I am a relatively positive and pragmatic person. I guess this is partly nature and partly nurture. I also believe it is partly a personal choice to see the “glass as full”. In addition I put this down to managing my stresses positively by exercising, by planning and by implemennting plans. I find that wherever stress is manageable, a plan followed by activity and reflection is infallible. Exercise always helps provide perspective, whether the stress is controllable or not. I also try and understand my frustration and stress and where I cannot control circumstances, accept them and manage around them where I can.

Where am I now – happy, grateful, occupied, slightly bored and in search of more engagement. My initial recovery was mostly physical buthave spent the last 2 years recovering to what I refer to as my “elite athletic status”. I have a thought about retiring. Just for the record, I can’t afford to retire. I will need to return to work, when I am able to, at some point in the future). This is certainly a little intimidating after  a 4-year absence but I am confident I’ll reinvent myself successfully. Having experienced the last few years with little purpose other than recovery, I believe it is unwise to retire to a vacuum of engagement. I believe our engagement should be beyond our personal lives and in some way require ongoing interface with society and accountability to society and ourselves of course. For me, vacations, coffees, socialising and sport should remain extra-mural albeit at a stepped up rate. I certainly expect less structure is appropriate.

Have I changed? In essence not really. Probably more mindful, less stressed and more conscious of the gratitude I feel.

What I’m sure of.

·       Don’t give up your medical aid insurance if you can possibly avoid it. Even if its only hospital plan. Public health services are tedious and often inadequate with diagnosis and treatment mostly happening too late.

·       Gratitude is a most empowering and uplifting sense.

·       Giving where you can is wonderful.

·       Staying fit will not necessarily make you live longer but definitely make you live better and have more fun.

·       People mean well. People show this differently but the care and kindness always lies behind all interactions.

·       The best lesson to the world from Covid19 is that we should be more kind to ourselves, others and the planet.

·       A secret to success is personal accountability and self-empowerment.

·       Persistence, setting objectives, planning, action and reflection is omnipotent.

·       Being authentic and mindfull or present is so liberating. This sentiment is beautifully embodied in the poem “Do not ask your children” by William Martin.

Do not ask your children

to strive for extraordinary lives.

Such striving may seem admirable,

but it is the way of foolishness.

Help them instead to find the wonder

and the marvel of an ordinary life.

Show them the joy of tasting

tomatoes, apples and pears.

Show them how to cry

when pets and people die.

Show them the infinite pleasure

in the touch of a hand.

And make the ordinary come alive for them.

The extraordinary will take care of itself.

My Purpose – To enjoy life and do no harm.

A foundational idea – Me and My NOT My and Me

I believe that one is best served by firstly focussing on one’s own well-being. One’s own health, purpose and integrity. By achieving personal wellbeing we are able to serve our family and society most fruitfully. Serving society firstly we often compromise our own well-being and inevitably “ours” are compromised. This attitude does not advocate a hedonism or selfishness.. For example, if kindness and respect for others is one of your values, you will not be selfish. I would not enjoy life if I contravene my own values. I aim to enjoy life and do no harm. While doing harm would undermine my enjoyment of life, I feel it is worth highlighting to avoid harming myself as well.

I try to be curious, interested and interesting. I aim to be wise, be humble, be kind and be silly sometimes!