Charity Appeal: Personal tragedy and a VC mindset
Raising money to help disadvantaged and elderly cancer and chronic illness sufferers
Two and a half years ago my father was diagnosed with cancer.
Acute Myeloid Leukaemia to be precise. One of the worst types you can get.
It was totally unexpected.
A fit person one moment, I watched as time went from feeling infinite, to being definite.
Why him?
Why me?
It was the toughest thing I’ve ever had to go through.
So we’re off to start our climb of Kilimanjaro this weekend and raising money for charity.
You might be thinking…
…We’re past the quarter-life crisis, so has the mid-life crisis come early?
No, no. 😂
We’re supporting a Hong Kong charity giving socially disadvantaged and elderly patients much greater access to crucial drugs that will extend life and increase the quality of it. Please support us. You’ll be donating directly to those in need.
You can donate by clicking this link. Any amount is greatly appreciated.
https://sjs.org.hk/en/support/online-donate.php
In the “Services” section of the form, please select “Medication Subsidy Program and the Other related charity projects” as per example on the right.
In the “Other Services” section of the form please type “Charlotte and Colin” per example on the right so we can keep track of how much we’ve collectively raised as a team!
Yes, you can volunteer your time to help care for sufferers.
Yes, we could have supported a charity creating practice-changing research (such as Cancer Research UK) for this initiative.
But without funding for these crucial drugs, it might as well all be in vain.
Let me explain. Sadly.
In a place like Hong Kong, despite all its riches, not everyone can access the full range of treatment options.
When someone is diagnosed with cancer, chemotherapy is the oft-mentioned treatment.
There are standard treatments.
And then there are non-standard treatments. Reserved for older patients, or those too frail for standard chemotherapy.
Unfortunately, when patients aren’t deemed fit for standard therapy, these non-standard treatments aren’t covered by public health in Hong Kong.
Hong Kong doesn’t have a big pharma market, nor is it a big health insurance market.
So these drugs are very costly, and without them, patients neither have much time left to live, nor the quality of life.
Why have we decided to do this?
Here’s my story.
Out of the blue: the nightmare I couldn’t wake up from
It was the middle of 2020. The height of the pandemic. In London, there was finally some respite. The beginnings of another glorious European summer began wafting through the air.
I’d counted over half my life living abroad. I didn’t feel like an expat at all. Locals thought I was a local. London was home.
Strangely enough, I still remember thinking to myself at the time. The parents aren’t getting any younger. Whenever I’d visited Hong Kong, I’d always spent most of my time with them. It was always hard to say goodbye.
How difficult it must be to deal with a family emergency a million miles away.
Little did I know what was to come.
I jumped out of bed at 7am one morning.
“What’s up? You haven’t picked up your phone for a week – is everything OK?”
“You’d better speak to your Dad”
*bleep* … *bleep*
“Hello Colin”
“How’s it going Dad?”
“Not good”
“Ok..?”
“No it’s not Ok! I’ve been diagnosed with Acute Myeloid Leukaemia. The doctor says I’d be lucky to see two more years.”
We had a mountain to climb.
Travelling home in a pandemic
Travelling long haul in a pandemic can be described in one word.
Surreal.
Face shields. N95. Incredulous. Confinement.
It was 2 weeks of quarantine before I got to see Dad.
When I saw him, he actually looked good.
The doctor rushed in and gave me the low-down. There was nothing upbeat at all .
Now it’s an understatement to say I didn’t understand anything about the disease.
Leukaemias are cancers of the bone marrow. Also known as blood cancers.
There are two main types. Chronic, and Acute. Chronic leukaemias develop slowly over time, and can be controlled using drugs. If not cured, patients can still live a decent life for decades following diagnosis.
Whereas Chronic leukaemias are like a slow burn,
Acute leukaemias are like a flash flood. They occur suddenly. Devastatingly. If not treated, sufferers die in weeks. From a standing start.
Acute Myeloid Leukaemia (AML) is where white blood cells in the bone marrow do not mature into infection-fighting and immune system-building white blood cells.
They remain immature. These immature blood cells, known as myeloblasts (blasts, or “bad cells”, for short), flood the circulatory system, and also prevent all types of mature (good) blood cells from developing (red, white and platelets).
Dad started off being given hypomethylating agents. These expensive drugs don’t actually control the root cause of leukaemia. It would only be a matter of time before the bad cells came back.
We needed to get on standard treatment for a shot at a cure. And it was a gamble.
Sleepless months. The research begins
Perhaps it was my experience as a VC that gave me a drive and method to research new things from scratch.
The urge to reach out to a network of experts.
To argue with experts despite a lack of expertise.
And to make crucial decisions on behalf of others.
All the while, having to navigate the social landscape of this crazy world of doctors and nurses.
Standard chemotherapy is not cheap. But they are generally prescribed on the government treatment schemes. You get 7 days of induction therapy to induce remission. Then 3 days of consolidation therapy – more powerful chemo drugs to maintain remission. If remission is achieved, there is then a window of time to consider a shot at curing the disease.
We needed a stem cell transplant.
You see, in Hong Kong, stem cell transplants are administered by the government. And there is only one hospital offers that offers it.
Even if you had insurance and could go private, you would have to queue to do it. If you are older / not physically fit, they might not have the resources to treat you.
I spoke to no fewer than 7 doctors around the world.
Seeking advice. Seeking options for a stem cell transplant. If it was even an option in the end.
We had to see if Dad would get a remission from the chemo, and hope his weakened immune system wouldn’t lead to infection.
We had to go abroad.
Again. Surreal.
The doctor in Hong Kong asked whether we really wanted to go through all of this. It would be an ordeal.
“Sorry mate, we need to go for a home run.”
Dad needed a fighting shot.
Finding the Match
We didn’t know if Dad’s leukaemia would go into remission of not.
In the meantime, we did a search of the stem cell register worldwide. Turned out there were plenty of matches.
I also wanted to see if I could help. I took a blood test. Children are automatically 50% matched.
When I got the results, one doctor from Singapore, who I made good friends with said,
“Well, this proves you are your father’s son”
You can imagine the jokes 😂
To lower the risk of Dad’s body rejecting the stem cells as much as possible, we needed a relative. Ideally, a sibling. There was a 1 in 4 chance of a match.
My aunt in Scotland was a match. The best option we had.
Blue pill, red pill moment
Ultimately, all the hard work and sleepless nights researching options and chemo itself paid off. Dad got his remission.
We scrambled, and the choice was University College Hospital in London. Made sense. I knew Central London like the back of my hand. We had one of the best options.
Now we had to decide, would we stay in the familiarity of Hong Kong, and hopefully enjoy one last Christmas? Maybe it would come back, we would be back on hypomethylating agents?
Or, head to cold, gloomy London, gearing up for another dreaded winter… and under lockdown. Not knowing if we would ever be back in Hong Kong.
Dad and I flew over. It was scary, and we were nervous to say the least, but it was all very smooth.
By the time Christmas was around the corner, Dad was finally ready for his stem cell transplant.
Stem cell therapy is nothing short of a miracle. Credit to all the magic of R&D.
It isn’t perfect, but when it works, it works wonders.
We watched as Dad spent Christmas in hospital recovering from the transplant.
Without insurance, we were told a stem cell transplant would cost GBP300,000 at least. Who could afford that?
A double-tragedy
Finally, by early January, Dad had dotted all the I’s and crossed the T’s with the stem cell transplant process, recovered, and was ready for discharge!
To say we were elated was an understatement.
The next few weeks and months would be about weekly check-ups at the clinic, and taking medicine to suppress the body from rejecting the new stem cells.
Things were on the up. Dad’s blood readings were coming up, and staying up.
By early February though, something concerning was happening.
Dad was feeling more and more exhausted. His blood readings were fluctuating
Then came the devastating news.
The leukaemia was back. We had a relapse.
In the UK, clinical trials are available. We tried to see if these, I scoured different networks around the world for a solution.
The most sobering and realistic advice was from one doctor, who said I should just spend as much time as possible and just be, there.
We had fought hard against the spectre of the illness. We tried to find every way to defeat it.
But at the end of the day, it really was about being there for as much quality time as possible.
Picking up the pieces
Caring for someone going through a major illness is not easy. Caring for yourself is another matter. Exercise and care for my own wellbeing took a back seat.
On top of feeling life was being stolen by Covid, I felt robbed of time with my family. And just being my old self.
The constant tussle between listening to experts, and being in control of your own health.
Amongst the many things, I observed that Western and Asian healthcare settings both offered top quality healthcare treatments.
But
When it came to more holistic and palliative care, I felt Asia had some catching up to do.
In the UK, we had dedicated nursing and palliative care staff who would provide emotional support for both the patient and relatives. And they were very good at it. It really made a difference during these difficult moments. One of the nurses even said, “your Dad simply won the bad luck lottery, I’m sorry”.
But
We have silver linings.
Hong Kong St. James’ Settlement is a charity supporting disadvantaged people with severe illnesses such as cancer in . It is purely donor supported. They support a wide range of different social needs.
In the case of leukaemia, they are not only providing palliative and hospice care to sufferers.
When patients are ineligible for conventional 7+3 chemotherapy (either old age or poor health), those who cannot afford to pay for hypomethylating agents basically have to enter end of life care.
Health and quality of life both suffer drastically. Time is short.
Their Medication Subsidy Program provides access to these. But this can only be solved with donations.
Whilst supporting great charities around the world funding-practice changing research is a noble cause, I think solving the issue of extending quality of life is extremely worthwhile.
Part of being a VC and entrepreneur is to identify and solve challenges within society. Backing the right solutions is what it’s all about.
I have a newfound appreciation for things.
Some things I’ve learnt:
· If you’re not happy with something, make a change. Complaining only gets you so far.
· Be gentle. Even if someone is hard to deal with. You never know what someone is going/has gone through.
· Your health is in your own hands.
· Don’t take things too seriously. Take a break. Re-charge. Everything is better with a fresh perspective.
· Just because the opportunity has been there every day doesn’t mean it will be there tomorrow. Seize it. Tell your loved ones how you feel.
Thanks for reading this,
and thanks as well for supporting our cause.
Even greater thanks for supporting those really in need.
Africa’s highest peak beckons - we’ll beat it this time.
Our spirit of adventure lives on.
Thanks to my in-laws, my mother and my wife for getting to where we are today. Thanks Dad for making me the person I am. This is for you.
All views are my own.
Well written Colin. You dad would be (is) proud of you.