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

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.








 

Young adult cancer. Ann-Marie's story (Isolation)

Following my previous post about loneliness, which has had some incredible feedback, I just had to publish this account of a very brave young lady, Ann-Marie, who from the age of 4 has battled Ollier Disease and then at the age of 25 was diagnosed with bone cancer. Ann-Marie bravely wants to share her story through this blog, to raise awareness of how isolated people can feel, at the time they need support the most!
Some of our younger readers may recognise the roller coaster of emotions. This also emphasises that these emotions can effect you, at whatever age you are
This post is slightly longer than usual, but an incredibly powerful message!

"I fought the fight; I'm out the other side but what now?"

 So, it was a little while ago now but I made it through the last major and by far the hardest and most upsetting milestones on my bumpy ol' journey. F**k that was hard! It was very emotional; I knew the anniversary week of my surgeries/complications was going to be the hardest. That week in the previous December was so frightening and confusing, the plus side of being so ill at the time was that it was too hard to comprehend what was actually happening to me and I launched myself fully into fight mode.

 
I can spend the rest of my life asking 'why?’ but now I need to start trying to ask 'how?’

How do I move forward? How do I try and leave it all in the past and view it as a blip that happened in my life? How do I reclaim the parts of me that I lost along the way, and regain the big enthusiasm for life that I used to hold? And how do I overcome these feelings that have been suffocating me for so long?

 Self reflection is a right b**ch hey?! I know this all sounds very downbeat and probably not what you'd expect from gobby old me but I vowed to be totally open and honest about every part of this time of my life, even if the chapter I am about to explain was sugar coated for a while by myself, but there are lots of reasons behind that and my main aim in speaking out about my experience is to spread awareness of the psychological effects that can occur.

 
I spent quite a bit of time battling with these demons behind closed doors and only letting a few selected people in on my thoughts, although never quite fully, thinking that I must be going crazy but also feeling that I'd be perceived as somewhat ungrateful of my blessings, whilst so many people are out there suffering and would give anything to be in my position. ‘C'mon, man up’ I told myself; it's not the end of the world right? And no, I knew it wasn’t. I knew that things didn't always go to plan, I knew how loved and cared for I am – surrounded by so many family and friends willing me on, expressing kind words of encouragement and offering support left, right and centre, even people that I’d never met! And I knew how far I've progressed in this length of time but when you are caught up in a cloud of despair it's very hard to see what's on the outside.

 
The emotional effect that it's all had on me has been so isolating. Along with the fact that, due to my situation, it’s highly unlikely that I’ll ever get the longed after ‘all clear’ the fear of the unknown was at an all time high. It's incredibly hard to admit that something is not right when your mood, thoughts and actions become totally alien to you and at the same time completely out of your control.

 It was told that I was suffering from Post Traumatic Stress Disorder (PTSD) in December '11 whilst still in hospital, it's not unusual in my situation, a near death experience is not something I would recommend! I was displaying symptoms of this anxiety disorder and battled with very distressing thoughts on a daily basis but, as I mentioned before, I was still in fight mode so had getting back on my feet as my main priority. The thoughts did not go away and began to take over my everyday life, with every setback I experienced, the feelings would grow stronger and I had a massive year of forward rolls and set backs indeed. To be quite frank, looking back and knowing more about it, I can now see that I was completely engulfed by it.

 

I never expected this to happen, I expected (and wanted more than anything) to be one of those people that bounce back straight away, go and live life to the full after cancer treatment and achieve their happy ending. I did have plans at the beginning to do this, LOTS of plans. But with every setback I encountered it felt as if my life was being ripped to pieces in front of me, I wanted to know why things kept trying to hinder my recovery and it would drag me back down further into that dreaded dark pit of despair each time.

I questioned why this was happening to me and felt a great deal of resentment. I missed my old life so so much. Why did it all have to turn so s#!t?!

From the outside I guess it was not that noticeable to most people, I'd keep up a front because I was terrified of people finding out that inside my heart was breaking and I felt absolutely torn to pieces. Which is a classic sign of depression but I just kept thinking ‘don't let them down, keep the brave face on and do what's 'expected' of you’. It was a constant fight with my emotions and behind closed doors I was a total wreck, I'd lay awake at night over thinking, crying my eyes out because I just couldn't look forward and that scared me more than anything. My future hopes and dreams that I'd built up over the years were gone, just replaced with a blank. And my relationships with those around me, even my closest were beginning to buckle under the strain.

 

It was around May last year that I finally swallowed my pride and asked for help, which was the one of the hardest parts of the whole process. It's not easy when you go from being happy go lucky, taking things in your stride to suddenly not wanting to see people, stop doing things you'd previously enjoyed and sometimes going to sleep and dreading waking up the following day. Constant irrational thoughts like these would plague my mind. I was petrified that if I admitted what was happening to me that I’d let everyone that has been supporting me through this time down, I didn't want to be judged, I didn't want to be seen as a drama queen but I knew I couldn't go on living like this anymore and something had to change. Tbh, I felt really s#!t, most of the time.

Without sounding all woe is me, I've had some pretty awful experiences in the past and just ‘got on with it’ so it was very out of character for everything to come tumbling down around me but more so for me to allow it to. The 'old me' would have dug her heels in and told it to 'buggar off' but not as lightly as that.

 

Anywayz, after many gruelling assessments I was finally diagnosed with depression and PTSD (yep, don't do things by halves!). I was offered a place on a prestigious programme and have been attending for the past few months. I have only just completed the programme and without sounding all #ohmydayztherapychangedmylife about it, it really has helped me and I can see and feel the effects in my thoughts, behaviour and emotional reactions to situations. I know it's only early days yet so I must not jump the gun. Don't get me wrong, it's been really horrific in parts, emotionally draining and I still have 'off' days but different techniques used have been helping to ease up this messy 'ead of mine. A lot of things have happened recently that have coincided with the therapy too, so these factors may be a driving force that contributed to having a clearer head but whatever it was, I aint complaining!


 

 

I know that cancer can target anyone and people have to deal with it in their own way. You are not told about the emotional effects you may encounter, you are not told about the possible months you may spend crying wanting everything to just f••k off and give you a break. Of course you are not told this because you are expected to be strong and put all your energy into fighting.

 

You won't let it win but it definitely puts you through your paces!

 

And that's fair enough, it's expected that the main focus will be that happy ending but don't be afraid if this takes a little longer for you. When I was experiencing depression at it’s worst, I was convinced that I must be some bad exception to the rules and that I'd done it wrong because I didn't feel I could jump for joy at what should’ve been the end of my treatment, I was still living with the effects and being treated for various complications. I felt empty, lonely and frightened.

 Overall what I'm trying to say is that is completely NORMAL to feel this way, and not to beat yourself up about it, you are not a failure and there are no rules.

You could have the worlds biggest support network but still feel alone; this doesn’t mean you are ungrateful.

Help really is there should you need it and it may take a while to start experiencing the positive effects but you will be on your way to your own happy ending at some point.


I would like to thank Ann-Marie for taking the time to write this piece, and share her experiences. You can read more about Anne-Marie through her own blog, 'One girls quest to rave'