Chapter 63 Let’s reflect

I know that I am used to take this update for sharing kind of a summary of all the nice things I did since last time and share a whole bunch of pictures and sometimes I just wonder whether this may help someone but some tell me it inspires them so I may come back on these later.

BUT

This time I decided to take this opportunity to reflect on where I currently stand from a health perspective and also how the future may look like in the coming few years. I think indeed that I am now reaching a point that makes me realise what changed since I got hit by the leukaemia.

As I mentioned in my previous chapters my GvHD is in my back and I have to live with its impacts i.e. scleroderma, dry eyes, cataract in both eyes and type 2 diabetes mainly. These will remain part of my life till the end… no way I can escape unless major medical breakthrough but being a pragmatic, I leave that hope on the side.

The ones who know me, work or live with me know what is the impact on my day-to-day life and understand what means to constantly humidify your eyes, get an insulin shot before eating and/or after and try to avoid the sun or even hurt anything… these are for me now natural behaviours and definitely part of me.
Some of you are aware that my immunity is back to normal (new baseline I guess…) but I still refrain myself from eating mussels, clamps, oysters, etc… because of nine years where I have been banned from eating those and I am not even talking about germs vs. shaking hands and using alcohol spray just after…

Yes this is the new me in terms of basic behaviours and visible relationship impediments but I still consider myself privileged to still be alive, having a social life, working and having a normal family life… I always keep in my mind some I have seen disappearing during my treatments, the ones that are stuck at home or the ones having a relapse… I touch wood, keep my fingers crossed that this stays far away from me now even if it is always in the back of my mind.
A vivid example is typically that I wake up in the middle of the night with the taste, smell and feeling that I have a gastric tube back in me and this generates cold sweats and makes it hard to go back to sleep after this…

Another one is the diabetes and how to be able to assess my sugar level after eating this specific meal vs. the amount of insuline to inject based on current sugar level… that equation is an on going challenge for my poor brain even if I am getting better at it after one year… thanks to technology to enable this.
Do not underestimate the impact of the diabetes on your lifestyle… not only you have to solve that equation multiple times a day but you also have to do your multiple injections even during meals (you get used to be discrete and even do it when others are eating)… I must admit people understands what it means. But what also takes a toll is travelling as you always have to manage your stock of the different syringes and patches when you go for a multiple days trip… I used to only have my eyes’ drops to carry with me everywhere but now I need more material.
This does not take into account the pills I still need to take for magnesium, blood pressure, cholesterol and diabetes. So yeah interesting ways of travelling.

Talking about travelling, as you can see on this blog or Facebook or LinkedIn I keep moving a lot and I still need a wheelchair in airports if I need to go through immigration as I cannot stand too long because my legs are getting weaker and have to sit which is not always convenient in such a line… for the rest I am glad that I am back to a normal size and can travel again without other special support or threat to get severe issues that could get me to an hospital somewhere I had no clue about. I must admit that I developed an addiction no, a dependency to my local Belgian hospital as they saved my life and know me by heart now! Up to the point that I retained my domicile in my small Belgian village so that I can still benefit from this hospital services…

The recurrence of these chapters are based on the latest visit at the haematologist and I used to share the results and could keep you aware about how I am doing. Now I go only twice a year and in short the result is: your main issue now is with the diabetologist 😳😂 which is great news on the cancer front! The diabetes front is also now on a six months basis 👍. I know this sounds like great news and objectively it is but it still generates some anxiety not to be monitored more often so I alternate both so that I have a blood test every quarter… Am still indeed anxious as I used to be monitored three times a week to once a week then once a month followed by once a quarter and now once a semester… I should get used to it but getting information about my health is really important to me!

My next item I would like to share here is the changes in me and my behaviour. I must admit that the cancer hit me at a specific time in my life… we were back from Malaysia where we lived for four years and as I was travelling a lot for business I was still kind of settling back home and revive my local network. Not an easy task having been away for five years as we were in London before going to Kuala Lumpur.

So going through such a rough patch (look back to the first 10 chapters with the family and a small set of friends has been difficult for the family as that all experience took a real toll on my close ones, much more than I ever thought with some impacts still five years down the line…

It took me a while and some powerful conversations to integrate my new normal and start rebuilding something and I realised that this was a fantastic opportunity to start doing things differently instead of getting more cynical than I used to be and even more sarcastic than I was before. Of course I still have a bit of it in me, else it would not be me, but I made a decision to put much more energy in giving back and try to make the world a better place to be…

Sounds nice and easy but it took me time to challenge myself in all compartments of my life, family, social relationships, friends and even workplace… it meant, to start with, that I had to be more open to conversation including the difficult ones and becoming a more active listener and accept to sometimes stop driving and get more in a driven mode…

I started rebuilding my network by moving to a local Rotary Club that gave me the opportunity to socialise with likeminded people in terms of giving back to the society and I met wonderful folks and delivered rewarding activities to help organisations that are helping research against cancer, helping cancerous children, etc… and likely important managed the student exchange programme locally giving also the chance to get 5 of these kids at home as well ❤️. These were really constructive and valuable years that brought me now to be the one in charge for a district in The Netherlands 🇳🇱 as I changed club when I started to work out of The Hague.

Same story in NL as I could find a great club there that adopted me and where I can be involved and make new friends and allows me to better fit in the Dutch picture… So three countries leading to three clubs helping me blend in and be part of the local society but now with a clear angle in helping others. I keep helping in my home town in Belgium with some good friends sharing my passion and we do local activities to raise funds and help local organisations… we leave the biggies like Polio eradication to Rotary 😉.

In the workplace, this might be were my change has been the most radical… I was a guy with ambitions and was on trajectory with in average a promotion every three years and with global scope and nice exciting assignments. I must say that it was kind of a “it is all about me” environment I was promoting and even if successful at times, not always personally satisfying as you generate anxiety, jealousy, unnecessary competition and you miss the positive aspect of the interaction with others.

That came to me as an obvious change that as someone promoted me while between surgeries and offered me a new professional path that if he had confidence and trust I could deliver, I should do the same! That inspired me big time and gave me the nerdy when I resumed travelling to apply this mindset that is coherent also with my Rotary story and so I started a new career focusing not on being personally successful but getting success through others and grow people working for me or around me by coaching, mentoring and inspiring them.

I am proud to see some of my folks now getting promoted and leaving me to do bigger things and keeping a solid relationship in place and keep sharing. I also realised that by doing that I also developed parts of myself that I under played for so many years and that I may have missed opportunities to do better but always look forward based on learnings!

Having all these changes now in place had a positive impact on our family life as well of course and my have helped us going through growing two teenagers who also got hit during this period. On top of coming back after expatriation and having to go back to school in French while they were schooled for five years in English, they also had to recreate a new social network in Belgium so not obvious for them… I hope they will never realise the whole journey and felt safe during those years but it looks like they do well 😉.

The one that had to take care of the whole thing during the painful times was my wife and she did a brilliant job keeping it all together and I will never forget what she did and never thank her enough for all she did! I guess that my Facebook wall shows it a lot that I have her in the center and that most of what I do since 2011 is also to keep her upbeat as she had to go through that rough patch as well. She indeed got a bit depressed when all was back on track for me as she suffered from adrenaline going down and the best metaphor I can use is a recoil after a gun shot. Now we all are back on our feet and our new normal is just simply exciting!

Wow I think it is my longest post ever but it helped me reflecting about my drivers and why these are the ones leading me right now…

I still have that project of writing a book about this story and it starts now shaping in mind in the direction of how my professional skills potentially helped me getting me back where I am. Also how I could somehow build this resiliency that enabled such a recovery. I truly think that such an exercise may not only help me analysing what happened but also deliver some learnings that may support others having to go through similar dire. This might a nice new project to work on while we work on creating a Japanese garden in our house…

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Categories: AML

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