Are we prepared for increasing survivorship?

This question is actually not as crazy as it sounds. In the last few weeks, I have had numerous conversations with a very good cross section of people about the lack of support for people affected by cancer, once they step outside the hospital environment. Despite, the length of time of my own personal experience, I am still shocked, how little support is available.

During my conversations with professionals, the biggest issue that I find is a demarcation of responsibility. My doctors, are doing their best to keep me alive. They care for all of my physical issues, either as an inpatient or by giving me drugs which I can take at home. Once I am outside of that scenario, it feels that I am on my own. My family and friends have been with me, for every step of my journey, but as I have said in previous posts, "I am the only one walking in my shoes!"

I am the one feeling the pain, and mental strain, of trying to stay 'normal.' Attempting to live a life, whilst trying to stay alive. Fitting in good things, around treatment and hospital appointments. Sitting at home, whilst my friends continue with their careers, and I do my best to be useful, as my body becomes weaker. Thankfully, the Internet was invented in my era, and I have been able to use my mind much more, and find different ways to use my skills, and occupy my time.

 

 

 

Talking to numerous of my fellow patients, I have yet to find many, that have been able to continue their careers where they left off, prior to their diagnosis. Many have had to go part time or are even unable to continue working, due to physical issues, or the amount of time spent at hospital. Several have been made redundant, and despite discrimination laws, are unable to find another job, once the word cancer appears! If you are not careful, a feeling of hopelessness can affect you. If you are unable to work, this can then create financial issues, which can then put a strain on domestic circumstances.

In the above couple of paragraphs, I have talked about just some of the problems that can be encountered by someone dealing with a cancer diagnosis. There are many more! One of the most common forms of support discussed as an option,is counselling. I have two observations on that. Firstly, there are very few counsellors around and definitely not enough for everyone affected by cancer. Secondly, there are really very few people that actually require those services. Maybe if you get to the stage of being clinically depressed, but most people are frustrated with what is happening and might just require more practical forms of support.

There are numerous charities around, that are great for giving information, regarding your disease, treatment, financial issues etc, and they even facilitate forums where you can find like minded people, with similar issues. However, these facilities are rarely 'joined up' and tend to be a 'one size fits all.'

The biggest problem, that we face, is that cancer affects us differently. Our circumstances are all unique, so there is not one single solution. To find the answers to the questions we pose, will take a lot of hard work, talking to many different people across many different organisations. If we are honest, most of us don't have the energy or persistence for that.

 

Using my now, very large back catalogue of experience, my opinion is that we need to approach the problems of cancer, in a much more 'holistic' way. After all, our physical health is affected by our mental health, and if we are anxious about issues outside the hospital, that is going to affect our general well being. But where does the line of responsibility get drawn? Is it right to spend time with your clinician talking about your inability to find work etc? How do we drawer all of the strands of our care together?

Apparently, the survivorship issues that we are facing now, are because we have become more successful at dealing with cancer. The drugs and treatment regimes are more effective, and we are living longer because of that. However, this is just the first step. We now have to look at the quality of life that we have, and how to deal with the psychological and emotional effects of our experience.

How are you dealing with your survivorship? Do you feel that there is enough support around? How would you solve this issue?

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.