Sunday, 27 October 2013

The joy of youthful innovation in cancer support.

This week has been particularly busy, as instead of being stuck behind my computer, sending emails and writing, I was doing my preferred work, meeting people. My project work is evolving, and I am invited to see some of the new work going on in the cancer sector. I have also completed a magazine interview, where my opinions were sought on some very controversial subjects. It will be interesting to see that in print! ( My legal team are ready!) To add to that, I have received a very nice invitation to talk to some policy making professionals, so a very varied week all round.

I have mentioned several times in my blogs that I love working with younger people. However, their issues can be incredibly complex. Unfortunately, many will not have been able to develop some of the life skills required to deal with cancer and it's side issues. But what I do find from this group, are fresh, stimulating ideas. They think very differently to me, and don't have so many preconceived ideas. Being always open to looking at problems differently.


This stimulates innovation, which is what we require, to keep improving things for people affected by cancer. I am heartened to be invited to talk with people who are now starting to look at new ways we may be able to deal with the psychological and emotional issues that all of us face. We are now in an era when social media will play an increasing role in this. We can no longer rely on the support groups and traditional methods of counselling etc. People are looking at new, more modern ways of gaining the support they require. Something more suited to the lives we lead today.

Social media has given people affected by cancer, a new, very powerful tool. Very quickly, they have learned how to use it effectively, and support networks are springing up across the world. Whilst a lot of us have found our way around by trial and error, many of our younger patients, have been using their skills and experience to develop methods of support, more appropriate to them. What this means is that we can build on this work, and target much more age appropriate support.

I have been very honoured to feature some wonderful guest blogs, from some incredibly inspiring young people. All of which get read week after week by new readers. The style in which they are written, shows a freshness and openness, and an enthusiasm to share their experiences to the benefit of others. The young lady who's work I feature today, is someone I connect with frequently, as we have a lot of common ground with our work. We both work with several organisations and use our contrasting skills to help others.

Becki McGuiness works tirelessly for others, despite her own cancer issues She was honoured, to participate in the opening ceremony of the Paralympics in London 2012. She is an incredible lady and has just produced a wonderful piece of work, showing how poetry and art can be effective in cancer support. Below is a brief summary of why Becki created this project, and also a little of her own personal involvement with cancer.

"I was diagnosed with a benign tumour in 2005 at 18 and osteosarcoma (bone cancer) in my sacrum at 21. I enjoyed doing art lessons whilst going through chemotherapy at University College Hospital London. By creating this book with Fixers I wanted to show others, the positive effect, art and poetry can have, to help you cope with what I call the Big C. The final push to physically get this project off the ground, was when my Dad was diagnosed with cancer in 2012

I hope this helps anyone affected by cancer, to feel that they are not alone. Everyone's experience of cancer is different. Do what feels right for you. You will have good and bad days, you're only human."

I feel very honoured to have a blog link included in this piece of work! My thanks to you Becki, for all you do for everyone affected by cancer.
If you would like to find out more about what Becki does, take a look at her brilliant blog or contact her on Twitter @LoveEire4eva

Saturday, 19 October 2013

" Unfortunately, science hasn't caught up with you yet! "

My personal cancer experience has continued apace for more than 6 years. For good or bad, we have managed to keep things going. I say we, because, there are very many people involved in that process, not least of all my medical team, who have kept me alive with their skill, and determination, and no small amount of treatment.

A lot of positive things have happened, regarding blood cancer, since I started.My disease is a rare Lymphoma, (Mantle Cell.) It is aggressive, and generally considered incurable. Survival rates are low, so prognosis is mostly poor. I was given the most appropriate treatment at the time, followed by an unrelated stem cell transplant. If that wasn't successful, my options were limited. However, it seems that things are improving quickly, and it now appears there are new drugs available, which may do good things, if and when I relapse.

Over the years, I know that I have been extremely lucky with my treatment. In reality, I have had more luck, than one man deserves. Although I have nearly lost my life on more than one occasion, my clinicians have always been able to find a solution, to my condition, and I have been allowed the drugs, to keep me alive. Although, recently I was told, by one of my team, " we don't always have a magic bullet," but I always believed they did. Until yesterday!


Due to some severe treatment I had, several years ago, I lost my taste and smell. Earth shattering for me at the time, but like most things in life, you learn to live with it. Along with all the other things that have slowly been taken from me, I have struggled at times. However my team felt that maybe there was something that could be done, and referred me to a senior E.N.T specialist. That appointment was yesterday.

It was interesting to see a new clinician, as he didn't know me or my case, only what he read from my notes. Firstly, he congratulated me on still being alive, to which I smiled. He then asked me what my problem was, and gave me a very thorough examination. After a sharp intake of breath he said, my taste and smell were gone forever. Yet more casualties of my treatment. He explained that in certain aspects of my treatment, science had been able to keep up with nature but in this instance it hadn't! "Sorry Mr Lewis, there is nothing we can do." That seemed very final, and bought my entire medical situation into perspective. Simply, I am lucky to be alive. 

If I take the positives from my story, I am lucky to be around at a time when medical advances seem to be happening in blood cancers, similar to my own. From a hopeless case back in 2007, things are looking more positive as the years pass. But what if that wasn't the case, and I was unfortunate to have a disease, where nothing much is changing in investment or outcomes?


My campaigning, for improvement in cancer treatment/support cuts across all cancers and I was very interested to hear about the work that Lord Saatchi is doing around innovation in cancer treatment. My opinion is, that this work is well overdue. In a lot of instances we have been using the same treatments whilst getting similar outcomes for years. It is exciting that this has now been brought to public attention, and the fact that it is being driven by a very high profile person is fantastic. Naturally there is a resistance in certain areas, particularly the Government, but what this campaign has done, is brought to the table, some of the very real issues that cancer patients can face, and some of the hurdles to possible improvement in outcomes.

There is so much work, still to be done, in the complex world of cancer. The further I get into it, the more issues I can see. But one thing that gets clearer for me daily, is that collaboration in our work, is the one thing that will give us strength. There are many people doing great things out there, but we definitely need a much more joined up approach if we are to progress things in the longer term.

The above are my views and opinions, and it would be great to hear yours. What do you think? Do you agree/disagree? 

Saturday, 12 October 2013

"Wearing cancer like a badge?"

Well, this week I didn't have to look too far for the content of this piece. There have been many potential subjects, but some can wait. This one has provoked a lot of outrage in the cancer community, and I wanted to add some thoughts of my own.

I am mostly sceptical when reading/listening to media reports, as generally they are 'slanted,' and often taken out of context. When listening to celebrities talking, I am always seeking a hidden agenda. A new book/record/film to plug. Come out and say something controversial and get yourself back in the spotlight! So I was a little surprised to read some comments from Jennifer Saunders about her cancer experience, that I felt were quite thoughtless to her fellow patients. However at the bottom of the article there was of course a good plug for her new book!!

My question is, were those statements designed to gain publicity for the book, or were they more about her well known forthright personality? Were they said for effect or did she actually mean them? What I can say, is that they have got people talking about Jennifer Saunders again, so maybe they have achieved their goal? Below are the comments to which this piece refers.

Asked if she thought some people keep wearing cancer like a badge, she replied:
'For ever, and I'll give you why-because it is the job you don't have to work for. You get so much attention and if you're not used to that, I bet it can sway you a little. I'm used to it. My job gives me the attention I'd otherwise crave. They must be so p****d off when their hair grows back. And you think," Oh, come on, cancer is so common now." '


We now live in a celebrity influenced society. How you define a celebrity is a question for another day! It is always sad to hear of anyone's  cancer diagnosis, but when a famous person comes into the media talking cancer, not only does it do great things regarding raising awareness,but there is always a marketing opportunity. I'm sure that there are queues of charities wanting that person to be an ambassador, or politicians looking to them to favour one policy or another. Also their own personal marketing position seems to improve.

Cancer is a great equaliser. It doesn't discriminate between rich and poor,famous or not. We are lucky that in this country, whoever we are, we will receive the best possible treatment available. However, where things differ greatly in the celebrity world, are the options when you are lucky enough to finish your treatment. We can't all disappear off to exotic places to help our recovery, or do an endless round of chat shows, write books or release new records, to keep milking the commercial cash cow.

A cancer diagnosis changes your life forever. If you are lucky enough, and treatment puts you into remission, you will have to do your best to pick up the pieces of your life. Surgery you may have had, could alter your entire way of life. Above, Jennifer refers to cancer, as a job you don't have to work for. Mmmm, for most of us, it is like a job, but one you don't get paid for! She is also right, you do get a lot of attention, but without it, there is a possibility you might die! I am shocked too, saying that people may feel fed up when their hair grows back.


When cancer enters your life, you will certainly lose, many things, but a lot of people can also find strength, when they didn't realise they had it. Some people manage to turn such a negative thing, into a massive positive, and their life takes a new direction. Others can be overwhelmed by the whole experience, and may crumble.In the real world, people lose their jobs, houses, and partners, and may struggle for the rest of their lives, because of cancer. They have to live whatever life they have left, around hospital appointments.

In summary, I was very disappointed to read those comments, from someone I have always respected, but if she was inferring that people 'use' their cancer to gain attention, then surely that is what she has done with this interview! I'm sure that it won't be the last time that she mentions it commercially either. Next time I see you on television I will be looking for that badge!

I have attached the full interview here. Generally very insightful

Saturday, 5 October 2013

Young people deserve better cancer support!

My favourite area of work is with young people, and there are two main reasons for this. The first is that I just love the enthusiasm and energy from this group, but secondly, I am genuinely shocked, at how little support is available, and I want to make some noise about this!

By chance, I have spent the last week, involved with some young people. I have attended a presentation by Shine Cancer Support and was privileged to meet several, vociferous people. I also met many young people raising money for Macmillan Cancer Support #CoffeeMorning. Since then I have been in regular contact, with others that have found me through Twitter.

Experience shows me that, services are ok, if you are very young, teenage, or 'middle age' but the group of 20s 30s,and 40s is largely forgotten. There are specialist units and charities that can help support you in your earlier years, but what happens when you move from being a teenager, to becoming a young adult? It seems that you start falling between the large cracks in cancer support.

I was 50, and very worldly wise when I was diagnosed, but I struggled to find the appropriate support I needed. So I am not at all shocked to hear that young people, who are just starting to find their place in the world, can't find what they need to help them, when facing a cancer diagnosis. My opinion is that in the past, this group, has not really had a voice, but with the now vast, use of social media in this age group, people are beginning to join up, and fight this inequality.

Many of the issues that this group face, affect them so differently to others. Fertility, relationships, education, and living with uncertainty, are just some of those. These decisions, are life changing, and difficult to make if you are in perfect health. Imagine the pressures you may face when dealing with cancer too.

During one of my many recent conversations, dating was being discussed by some young ladies. They were all talking about when they should tell any new partner about their cancer! At the start of the relationship, over a dinner, of just before hopping into bed? This was particularly poignant for anyone who has had surgery. We were all laughing, as we imagined some very strange scenarios. But the point was well made, and so important.

The ease with which these issues are discussed peer to peer is very refreshing, but the biggest problem I see is the difficulty in communication between this group and the health profession. Generally, it is like there are two different languages being spoken, and both groups struggle to understand each other at times.

Unfortunately, I cannot really think of the answer to this issue, even if there was an unlimited supply of money. But what I am really aware of, is the difference that communicating with someone, who has faced/is facing similar to you, can make. There are national charities that facilitate forums etc, but I am not convinced that this is what is needed. Unfortunately, although these are very safe areas, on the whole they don't truly represent what is happening in real life. There are many unofficial communities forming which are much more real, but still safe.

Small, local, and more welcoming support, seems to be what is required, but the way that marketing is done these days means that local organisations are constantly struggling for funding. What I have also seen is that, particularly with this group, the people running the support, need to have a greater connection to the people receiving it. I constantly see people in charge of large budgets that have no idea, of the issues that the people they are trying to help, are facing, they are just too disconnected! A common issue across most support agencies I feel.

Enough from me! I have attached a part of a blog from an amazing young lady. Sam has written a couple of guest posts for me, which have had tremendous impact. She writes in that very refreshing and blunt style, that I was referring to earlier. This piece is an example of the issues that these young people face. She refers to her experience with radiotherapy.

"I can't look at this mask any more because I am now coping with my cancer more than I did when I was being treated. I now have the time to think about everything that happened. And the more I think about it the harder it has become. I have nightmares, panic attacks and anxiety pains when it comes to thinking about cancer, just last week I convinced myself I had bone cancer and this week I was convinced I had a brain tumour, I know I don't but thinking about these things gives me pain which makes it worse! And theres no not thinking about it. Cancer has taken over my life. I have become my cancer. Oh bollocks!

I've thought about counseling but that's not something I want to do again as it has only helped 1/3 times for me. 
I've tried keeping it to myself but it only got worse.
I have my follow up next week and I'm hoping there is something or someone who can help me!

I look strong and healthy and like it never happened to me but my thoughts and emotions are only just deciding to catch up and look for healing help.

I honestly don't know whats worse, this torture of my thoughts going crazy or the constipation that came with chemo (I still don't poo the same!)

So please, someone tell me how to get rid of Samantha
And if anyone has any advice that doesn't come in a leaflet, that would be fab. I know we are ALL different in our cancer but there has to be someone out there who's had all this too!"

I definitely couldn't have put it any better myself Sam, and many thanks for letting me use this incredible piece. To hear more from Sam you can follow her on Twitter @sam_lightyear
or keep up to date via her blog