Some useful things I’ve learned from getting cancer

This week I got to see my eldest son graduate High School. It is something that seemed pretty unlikely I’d see in 2015.

I was diagnosed with leukaemia (AM1). The amazing team at Saint Luc Hospital in Brussels, and amazing technology and drugs, saved my life.  I took the chance to be part of a human trial for the treatment,  hoping that some good for others could happen from my treatment. . The chemo did not work, so the best option was a stem cell transplant to re-boot my system. A very generous German man, who I will never meet, who happened to be my genetic clone, visited Brussels, and I had the stem-cell transplant.

Fine German Stem Cells.

I’d not recommend the treatment unless your life depended on it. Mine did.  I now watch the Deer Hunter Russian Roulette scene thinking the odds of living are pretty good.

 

I’ve been kept alive by the miracle of modern technology. Treatments and drugs that until very recently did not exist. If I had to be living in Belgium in 2015 I’d likely be dead.

Two Books That You Should Read

After my treatment and long recuperation, I read two books that show you how much has changed so far and so fast.

One is the Emperor of all Maladies – A Biography of cancer.

The Breakthrough –Immunotherapy and the Race to Cure Cancer provides hope. It shows you the new generation of cancer treatments that are coming onstream. They are treating patients who would otherwise die.  There are new and amazing treatments in development and coming onto the market that are genuinely miraculous.

 

Miracles are not cheap

I realise that these modern miracles are not cheap. I’d not expect them to be.

And, I know the companies inventing them are not philanthropists and operate to make a profit. I am a social democrat and don’t think profit is a bad word. And, I don’t care that the companies who made the drugs that saved my life made a profit out of it.

So, I looked at how profitable some of the leading drug companies are. Like most high-tech and research intense industries, the profits are good, but they are not as good as some high-end car companies or Silicon Valley stalwarts. Good profits but not excessive.

Some politicians and officials need to realise that patients don’t care that treatments that will save their lives are not cheap.  They want access to the best and sometimes only hope of life. To deprive patients of this option is cruel.  And, at least for me, I’ve re-paid those costs back.

So, I am concerned that the European Commission and some European Governments want to level things downwards. They want to encourage the generic manufacturers that produce old drugs whose patent protection has worn out. They must know it is likely to lead to innovative treatments, treatments that one day I may need to keep me alive, not being made available on the European market. The number of patients using these miraculous treatments and drugs is always going to be limited. Patients don’t want to be fighting for their lives.

Some Lessons Learned

I learned some useful things whilst becoming a Chimaera.

1. You realise that innovation is not easy and automatic. There is no seamless flow upward of progress. Read Emporer of Madlies or Breakthrough to understand that. Becoming a German Chimera was not easy and it took 4 years for my immune system to improve.

2.  Nothing is certain. One day you going to board a flight to give a paper, the next day you are getting a bone marrow sample taken out of your spine, and pumped full of chemo drugs that have given me an aversion to the very sight of a bottle of Lucozade.

3. What you think is the worst thing that could happen is nothing even close. Really.

4. Rash optimism and listening to your own echo chamber of self-confirmatory babble is foolishness. If you just listen to the ‘good news, you are deceiving yourself, and putting your future at stake.

5.  Having your treatment objectively reviewed by three sets of world-class experts is going to help you.   You may not hear what you want to hear, but it’s going to be the best thing.

6. Ignoring three sets of world-class experts and going it alone is going to kill you.

7. Modern technology, drugs and the world-class infrastructure and staff are not cheap. Thinking you can get this excellence on the cheap is bound to fail. There are a lot of benefits of paying 50%+ income tax in Belgium. A world-class medical system is just one of them. Belgium is an amazing country in so many ways, this is just one of them.

8.  There are some lines you should not believe.  These include: ” The cheque is in the post you”, “I’ll respect you in the morning”, and “we are the government and we are here to help”. Governments and the Commission thinking they can improve life expectancies on the cheap should be added to this list.

9. The darkness before the storm is true for medical treatment and campaigning.

10. Today there are men and women working in labs to create treatments and drugs that are genuinely miraculous. Just because they may not be able to communicate this wonder to the wider world does not detract from the amazingness of what they are doing.