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

Life after cancer, for a young person. (Samantha)

One of the biggest things that I have learned, since I was diagnosed, is that outside your circle of family and friends, it is extremely difficult to find emotional or practical support to enable you to start living again.Once you are diagnosed, you have a new 'life companion.' If you are lucky enough to get into remission, it is very difficult to feel that you have completely broken your association with the disease.

I have been talking and blogging about these issues, as I feel that they are rarely mentioned to patients.Cancer has totally turned my life upside down, and I was a very competent and confident person, before this process started. It now feels that I have been thrown into a pool without being taught how to swim.

Yes, everyone has sympathy with my situation, if it was a currency I would be very wealthy! But without the support of family and friends, I really don't know where I would be. Once your health becomes unreliable it is very difficult to live anything approaching a normal life.For example, holding down a demanding job. Finding a job that suits your new circumstances or even gaining employment at all.

I was interested to read an article in The Telegraph that is now talking about these issues, and how our N.H.S needs to change. Apparently there are 1.8m people living with cancer in the UK but only 25% of those felt they had adequate support.

Research also found that cancer survivors are 37 per cent more likely to be unemployed than those who have not had the disease.

Under the new plans, those recovering from the disease would also be given access to information regarding employment rights and benefit entitlements.
Ciaran Devane, Chief Executive of charity Macmillan Cancer Support said: “We need to change the way we respond to people going through cancer: all of a sudden the treatments stop, and too often people are left feeling they are on their own, and fearful about the problems they are left with.”

He said cancer survivors, especially men often found it difficult to discuss the impact of the disease on relationships and intimacy, but were often relieved if the opportunity was offered to them.

At last it seems like our society is beginning to understand the issues.In many respects, I am lucky, I am in the autumn of my life, not seeking a career, my boys are independent, and I am able to get by financially. But how would I see things,if all of that was in front of me?

I featured Samantha's story of diagnosis and treatment, a few months back. The issues for young adults are totally different.We need more awareness of the issues that our children face, and it was great to hear in her own words how she felt. Now, there are different issues facing Sam!

"What next? – 20 years old and facing the world after cancer.

So you’re in your late teens early twenties and you’ve got a cancer diagnosis. You try every day to live as normally as possible, you want to go out with your friends and party, you want to fall endlessly in love with someone who acts like the sun shines out your ass, you want to find a job or go to university?

We all had a plan before diagnosis. There’s no denying it! I’ll admit I was lost but deep down I knew there was something out there for me, the navy, a part time job, going back to college, training, retraining. I didn’t know I had cancer but things weren’t going my way anyway and I was feeling down in the dumps and acting like my world was crashing down around me just because I couldn’t get a job. Then BAM Hodgkin’s Lymphoma, the lumpy icing on the cake.

Since that dark and damp summer last year, I’ve battled with cancer and rather than feeling like there was a fog around my life constantly I sometimes felt bright and good, especially when I was writing my blog. I’ve had setbacks, I thought after chemo I’d be done, I ran a blog that I closed down due to being accused of faking cancer (ludicrous I know! But unfortunately people do actually do that), I’ve lost friends and fallen out with family on the odd occasion. But here I am nearing the end of my journey and ready to get back out there and face the world! …

Or am I?

I have my college degree in sport, few credible GCSE’s and never held a job past the trial period due to my health.

So what now?

Currently I am on benefits which I’m not entirely proud of. I’m thankful for it but I don’t want to live off the hard working peoples taxes forever.  So here we think about where can I find a career? What do I want to do? My naval dreams dashed by diagnosis and a lack of experience in anything. I could easily volunteer and gain valuable experience but here again arises the problem of income, I could retrain or go back to college but again where’s my income? How will I know that I will enjoy what I’m training to do until I’ve forked out tuition fees for it? (And this isn’t just a problem for cancer patients it seems) Who knows for definite what career they want before they end up trapped or with a degree and a debt they no longer want?

I have considered that I want and maybe need a quiet office job with a steady wage once I’m the right side of remission. My grammar isn’t top notch but I like being behind a keyboard and I like writing. I’ve considered working for charities in any payable positions they may have, because charity has been one of my main focuses during treatment. I’ve considered that I’m a fidget and I don’t like to sit down for hours on end so maybe a desk isn’t ideal.

Luckily for me, I don’t have to decide that today but it’s something I think about every day. I’m 19, it’s difficult for anyone to get a job without experience but how about an individual that has health issues and will need time off? I think CLIC Sargent and the social worker they’ve provided me with (who is a miracle worker sometimes) will help me get somewhere. But what if I’m holding myself back? What if experience is holding me back? What if I won the lottery!? Everyone probably poses these questions to themselves. As a young cancer survivor my question is ‘ What’s the next step after cancer?"

What problems have you faced whilst trying to get your life back on track, after receiving a cancer diagnosis? Old or young, we all face different issues. I would be happy to feature your story if you would like to share. Please just leave me a comment below or catch me @christheeagle1 on Twitter.