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

The Importance of cancer support via social media

Since I was introduced to the world of social media, I could immediately see how powerful it might be. Certainly, like any new tool, you have to learn how to use it properly, to get the best from it. Which takes time. With trial and error you will find what it does well, and what it does, not so well.

Coming from a business background, and attempting to always keep things simple, I couldn't see what wasn't to like, by connecting like minded people, across the world. Once I found myself taken hostage by cancer, I applied similar rules here. If I can't find physical help for what I need, let me look on the net!

I couldn't find what I felt was required, so I thought I would try and create something. People often ask me why I spend so much time on a project that doesn't pay. But I know, how much difference these blogs make to people affected by cancer. How much they can relate, and how they help to remove that terrible feeling of isolation. Some things are not about money!

Below, I have copied comments, as they were published on my previous post. They moved me so much, that I felt obliged to share them with you. Psychological and emotional support for people affected by cancer, is still desperately lacking, and in a lot of cases, the issues are barely acknowledged. People are carrying this burden constantly, along with their physical problems.

It's not only patients that are gaining from our writing, but I know personally, when I speak to members of my own medical team, how shocked they are at some of the things, they read on my blog, that are happening to me. We are all still learning, but we need to accelerate things. Time is one thing that is not on our side!

"dear chris,

first some background of what I believe has given me a clue about feeling lost. both my husband and I had cancer at the same time - his was multiple myeloma, mine was ST IV meta BC, amazingly, we both achieved remission, also at the same time! we decided to mix the "new normal" and live "life-reinvented", gloriously and to the fullest.

sadly, only 9 months into remission, hugh died -
very suddenly. I found him next to me in our bed with no respirations or pulse. after 3 days in cardiac ICU, he was removed from life support, and I was a widow.

two months later I was diagnosed with uterine cancer, ST 3 with mets to the cervix. I am starting tx this week.

it's my belief that feeling lost is really grief. I know grieving for my husband is a separate (though certainly overlapping) process. but I have spent a great deal of time in retrospect, and now realize that what you spoke about reflects what hugh and I lived when we were in remission - a desire to live on our own terms and not on cancers' term. now, as I navigate towards tx with a new cancer alone, I can reflect in a more realistic way on what both hugh and I might have suffered post treatment - and I know we did feel tremendous grief at the loss of so much. but you see, it was we two, still crazy in love , desperately wanting to celebrate life. there were times we hid our pain and fears and losses - our grief - to help one another be happy.

as I grieve profoundly for my beloved, I feel extremely grateful for all those nine months we had, as well as the time we had cancer together. it almost seems a meant-to-be-ness that we became so utterly entwined and in love with each other, and a same meant-to-be-ness that we were able to live so happily those 9 months - ignorance was truly bliss.

in retrospect, as I read your post, I ponder what all would have befallen us had we not been a couple with cancer, nor achieved a robust remission together, and not flung ourselves head long into a life of adventure and delight. my conclusion is that eventually grief would have had it's way with us, I've wished many times to be able to bring clarity to so many mixed emotions, chris. sometimes my widow's grief is the overwhelming force in my life - hugh has only been gone since may 5th. but as I near treatment for the next gauntlet of cancer to go through now I am more typical of the individual who will face it alone; and even if one has faithful and supportive spouses, family, friends, and whole posse of good doctors - there is still the loneliness, insecurities, fear, and feelings of helplessness.

the big question is how in this day and age, could the medical community dismiss the element of grief from our care. the bigger question looms with more urgency - when and how will the message be delivered, loud and clear, and be dealt with by clinicians who simply give no validation to their patients, leaving them bereft and feeling lost and grieving.

chris, I can't thank you enough for sharing your story in this post. for months I've had such niggling and confusing feelings about insecurity, fear, and at times, just wanting to walk away from all things cancer, thoughts that are so foreign and disturbing. being able to comment meant I had the task of trying to figure out the very bewildering and sad and overwhelming issues you brought to the forefront. and I am so grateful to have had your post to finally be able to have clarity.

I am so sorry for all that you have had to go through. you are amazing, and a wonderful resource for superb support and the education you give so generously to others. I hope with all my heart it will all come back to you a thousand-fold. keep writing - you do it so well, and your are helping legions of other's whose hearts, minds, bodies and souls are hurting.

much love, and lots of warm hugs,"

Karen, TC


My heartfelt thanks and good wishes go out to Karen, and thank you for sharing.

Do you ever feel lost?

Regular readers of this blog will know that I have just returned from a weeks holiday. For a lot of people this is not such a big thing, but due to my illness and treatment regime, this is only the second time I have been abroad in 6 years. Considering that I was a regular traveller, both socially and commercially, this is a dramatic change in lifestyle for me.

After struggling with my change of circumstances for many years, tossing and turning in my own life, trying to make sense of things, I have finally found a way of life that fits in with my health commitments. My treatment and hospital visits involve a strict routine, so I have had to adjust my family and work requirements around that. Everything now fits, and I have accepted my new life for what it is.

 

 

I hadn't realised that I am now in a new comfort zone. Whilst working, I knew how my life was going to run, and had got used to a regular way of life. Although my work was demanding, I could handle it comfortably, along with my very busy social life. I sort of knew what to expect with everything!

As the holiday approached, I became strangely anxious. Why? Our friends, who know Cyprus well, had booked the holiday, and were even driving, to remove all stress. As we approached Gatwick airport, I started to sweat. Everything had changed, it was bigger than I remembered. We didn't even have tickets, just e-passes. I couldn't understand why I was feeling as I did. I hated being on the plane for hours, and felt like a prisoner.

Once we had reached our destination we then had to collect the car, and find our way to our apartments in town. This is where we found a problem! My pal had printed the directions in Greek! It was midnight and very dark, and quickly we became lost. We stopped at least 5 times to ask people, but with a combination of accents and language, we got further lost. We were tired, and I was feeling very uncomfortable. Finally we found a man on a motorbike, who, sensing that we were really lost, very kindly told us to follow him. After many winding roads, and hills, he took us to our destination. What a lovely man!

 

 

The reason, I wanted to write about this today, is that I am shocked, how cancer has taken away so much of my self confidence. Never one to be shy,I can still smile at people and good things will happen, but internally I feel so different! I used to thrive on anything out of the ordinary happening, and was always up for a challenge. The life and soul, wherever I went. Now, self doubt, has entered my world.

For those of you that know me through social media and my cancer work, you might struggle to believe it, but it is true! I still have that air of confidence, but a lot of what I had, has disappeared. Travelling around the world meeting new people was a way of life for me. Now I get worried about a week in Cyprus with my wife and friends!

I don't remember loss of confidence being on the side-effects paperwork I saw before my treatment started. In fact so many thing that I have encountered through my treatment, were never ever mentioned. How do you deal with issues like these? Not through reading a pamphlet, or checking it out on the internet. This is real life! I can only imagine, what would be happening to me now, if I had very little confidence, going into the process.

Feeling lost, brings with it the feelings of helplessness and fear. Being literally in the dark without help is frightening. This is how many of us feel when we enter the uncharted waters of cancer for the first time. This is another feeling, that you would struggle to understand unless you had experienced it personally. It is difficult to deal with things that are outside your normal experience, when you are feeling well. But when you are not, the hills of life appear steeper and higher, and at times insurmountable.

Have you felt like that on occasions, or even regularly? Even if you don't have an illness to contend with, have you ever felt lost in your life? How do you deal with it?

#braintumorthursday (Radio Interview 22/08/2013)

Last week I was invited into Croydon Radio to talk about my work in cancer social media. The interview has proved very popular, and I have been asked to post a link on the blog.

 

 

 

If you click here it will open up the link. If you then click download it, a slider will appear. My interview is the second half of the show, and you can use the slider to control what you would like to listen to.

For any further information regarding the show etc please contact @BrainTumorAunty