Some people have asked how we came up with the title for this site. The first two words are obvious since we are talking about blood cancer it makes sense to use the words in the title of what is effectively a personal blog. This isn’t my first blog, having spent more than 15 years sharing my experiences, my thoughts, and commentary on events that are of interest to me. Like many bloggers I like to think of myself as something of a citizen journalist. Maybe I have ideas above my station. I believe there is a power in many of us working together. But just as a single lymphocyte on its own is not much good at fighting infection, as I will discuss in a future article on vaccination, millions of them working together can make a huge difference.

The invention of the internet has been every bit as revolutionary as the printing press. Hundreds of years ago it suddenly became possible for people to produce thousands of copies of their writings and have them distributed around the world. This power wasn’t just in the hands of the rulers, but still access to the printing presses was not available to the common man or woman. If you wanted to start a revolution of ideas you needed to find someone with a printing press who was willing to make copies of your words rather than some one else’s

Nonetheless the printing press allowed ideas that were considered anti-establishment to spread throughout the populations of Europe and the World. Ever since books and pamphlets became relatively easy to produce it became essentially impossible for the rulers to fully suppress or censor the population.

So change came to Europe and many other areas of the world. Theology had become fossilised and nobody dared to challenge it. Martin Luther and others were able to revolutionise not just how people think about God but the very foundations of society.

Absolute Monarchy’s were replaced by republicans or by parliamentary democracy regulating constitutional monarchs. This is a peculiarly British compromise between central power, pomp and ceremony and the people it inspires. The British decided we didnt want to throw out all the trappings of privilege and the benefits it brings in terms of giving order to society. We felt that we did still want in some ways to be led by those who from birth were told they had a divine duty to serve the people. If nothing else retaining our Queen in the UK has been a reminder to our politicians that they may come and go but the great British public will remain. The head of state is a symbol of the people more than the politicians. And symbols are powerful as Tony Blair knew only too well when after Diana died he echoed her wish to be queen of people’s hearts by calling her the People’s Princess.

And at the end of the day no matter what field we are talking about is it is the People that matter, not those who rule. As some hospitals were rapidly emptied out in order to make room for the waves of Covid19 patients that were expected some doctors and managers no doubt would have commented that without patients hospitals were much easier to run!

But whether we are talking about hospitals, or about governments, or whether we are talking about clinical research or about policy changes, it is the people these things effect who need to be listened to rather than those in places of power.

The advent of the Internet has put even more power into the hands of ordinary people. Now anybody with a smart phone can start their own media platform. Footage of a burning building I captured on my phone once found its way onto national news broadcasts within a matter of minutes.

The people can speak. And we will not be censored by people in power any more. And whatever vested interests might want us to think or say, we can choose to think or say whatever we like. This is no revolutionary site, however. I happen to believe that the blood cancer doctors, researchers, health services, pharmaceutical companies, and politicians are all doing their utmost to help us. Advances in the treatment of blood cancer are coming at break neck speed. And most of the time they are being funded and made available to patients, at least in the developed world.

But knowledge is power. And too many patients are disempowered because their busy doctors and nurses don’t have enough time to explain things to them in ways they can understand. And so patients and the charities that represent them stand in the gap. Huge websites like those produced by Blood Cancer UK or The Leukemia and Lymphoma Society in the USA go a huge way to bridge that information gap. But Dr Google can still lead you astray and you can find yourself on unregulated, uncensored sites like this one. Better to have some of these little places be hopefully places of honesty and signposts to other sources of help. This little site will never manage to achieve as much as those from larger organisations no matter how many individuals start a blog here. But we can be nimble and responsive and help some of our readers a little bit.

In matters of health it could be argued that a site without oversight is dangerous. And I am cognisant of that risk. But the genie cannot be put back into its bottle any more than the reformation could have been stopped. Change as inevitable since after Martin Luther pinned his 95 theses to the door, someone copied them down and turned them into a pamphlet to be mass produced.

Today we live in a world that is not quite sure how to relate to experts. Some repudiate the whole concept arguing that people know better than PhDs. Politics enters debates about health, the environment and a wealth of other issues where we would be better to allow science to speak. Sometimes in elections or referrenda things that the central ‘elite’ had assumed everyone knew were good for them have been overturned.

Adrian explains more about the Blood Cancer Unlocked Site, Page and Group

And shows people around his den….

People power rules the world. And yet as every fan of super hero’s know, with great power comes great responsibility. This site gives its founder a voice. But I am just one voice. My intent through this site and the conversation it might on occasion spark in some corner of social media or other, is to also hear the voice of others. I will use whatever small platform this piece of internet real estate offers to make the voices of others with blood cancer be heard.

I will not be starting some kind of organisation. I do not see myself as someone who can bring about any form of organised change. I am not even that sure that much needs to change in the world of blood cancer since we are so well served by a wonderful collection of patient charities, and expert clinicians.

But of course all the progress of the last sixty years or so has been made possible by the bravery of people who, having been told they were probably near the end of their lives, refused to accept that meekly. They instead offered themselves up at their most vulnerable points to enter clinical trials. They knew that the treatments they were given might very well kill them not cure them. The chances were that the studies they enrolled themselves in might not help them, but they could see with the eye of hope that they could help future generations.

I am one of many hundreds of thousands of blood cancer patients who owe their lives to the courage and self sacrifice of those who offered the choice between peacefully embracing their passing, experienced horrific side effects in the hope that just maybe they and others would benefit from the treatments provided

Indeed some of them did die. Let’s remember one example that happened in the case of Venetoclax, one of the most promising and exciting medicines to be released for blood cancer. I am on a private patient forum where some of the members still remember the heady times when venetoclax was first being made available in a clinical trial. In these forums discussions happen away from those who, no matter how much they care, can never understand fully what it is like to live with cancer in your very blood. And so, several members of that forum shared their intent to volunteer for the trial of that drug which was thought to have so much promise. Whenever a medicine is first trialed it is given to only a handful of people for safety reasons. Sadly for some of them it turned out that venetoclax was a much more powerful treatment for certain blood cancers than anyone had dared to hope. And a few of those brave pioneering patients found that so many of their cancer cells were destroyed, releasing the contents into their blood, that their bodies couldnt get rid of the waste products quickly enough. And a few patients who had a prominent voice in those forums sadly died. They died so that many could live. Doctors learnt from the experience and introduced a much slower initial titration of the dose of the medicine, and with careful monitoring what they call tumour lysis syndrome just isn’t a problem for the vast majority of patients.

And so the story of blood cancer is not just the story of big clinical trials run by smart professors on behalf of huge pharmaceutical companies. It is the story of people. Brave dedictated people. Wether they be patients, or the doctors nurses and other professionals who devote their lives to helping others. And behind every person is a story and a potential voice to hear.

If I have learnt anything these past three years it has been that I cannot battle blood cancer alone. Not just in terms of the science and choosing which medicine to take and when to take treatment, but also to deal with the human cost of this disease. I have learnt so much and benefited so much from other patients and professionals alike. From the few moments a nurse might be able to spend during a busy shift to make you feel a little bit safer, to the volunteers who administrate online forums at times when they are very sick themselves they still answer countless queries.

All too often it is not some faceless authority figure who causes us to censor ourselves and not share our stories openly. It is us ourselves and our fear of not looking good in front of other people. We are taught to value being strong. SO much so that when I share my story in the way I do (trying to give you a sense of what it is really like warts and all) I speak about feeling so weak that others often immediately want to say to be “but you are really strong Adrian”. Well I don’t feel strong. But any strength I have gathered I have found from somewhere else. I am convinced that you can learn by listening to a world of different voices. I wil be pointing you to other voices and places where you can go to hear stories I have already had one blood cancer patient volunteer to write here. If you want to join us then please just let me know.

If I can contribute in some small way as a gift back to the community which has helped me so much then I will be glad.

Conversation can be sparked and continued in other social media forums. Facebook can be public and interacting with others who don’t have blood cancer or private taking place in our own forum. I have started that little area of Facebook associated with this site not because there is something wrong with any of the others, but because the sheer size and focus of many of the others inevitably limits the kind of intimate discussion of philosophy and the struggles I am aiming to stimulate. One almost always feels you need to censor yourself in a large group like that. So in a weird kind of way I don’t even want the Blood Cancer Unlocked Support group to grow too big too quickly. Of course if it does there may be other ways to capture the benefits that come from small groups. I am not moving out on my own and will continue to frequent several of the larger more scientific forums and will work with various patient groups on projects that really matter. We need the work of strong organisations, as well as the voices of individual people to make a difference. At the beginning of the piece I mentioned lymphocytes which are of course the source of most blood cancers. It is actually the case that the body tasks millions of them with looking for the right antibody to fight an infection. They all have a task but only one of them finds the key that unlocks success. That one is given all the attention and resources it needs to multiply itself and victory occurs. Perhaps someone reading this might come up with the next big idea, or the next small idea that will make a big difference.

Could it be you?