What Is ‘Living Well’ After Cancer?

What Is 'Living Well' After Cancer?

This week I have been invited to write a piece to coincide with the ‘It’s Time To Choose’ campaign that Macmillan Cancer Support are currently running. It is designed to make improving cancer services a priority at the next election, and given the fact that by 2016 there will be a thousand people diagnosed daily, this is something that is important for all of us! All the aspects of the campaign are important, but I have chosen to focus on ‘Living Well.’

What is living well after cancer

Back in 2007 when I was originally diagnosed with an incurable blood cancer, it was then more about just staying alive. My prognosis was poor, and I was originally given only six months to live. However I was given a successful stem cell transplant and although still very sick for some time, things started to improve. It became obvious I could never work regularly again though, as I had continual complications, which  I still have today.

Despite being a successful businessman, when I left the relative safety of hospital, I felt very vulnerable. This was my first experience of illness and hospital care. That side of things was very good, I had a fabulous medical team who are still with me today, but outside of that environment is where I struggled. I truly believed that since cancer affected so many people in our society, that someone would be there to help me get my life back onto a new track. How wrong could I be? The silence was deafening! Support, what support? I left the hospital with some booklets to read, which seems to be what many regard as the answer to our problems!

Of course information is helpful, but what was required was someone to discuss my situation with, maybe others that have experienced similar things, or professionals that could advise me what to do next. I had come with in an inch of my life, was on a mountain of medication, lost my job, my income, and all my self worth, not really sure what leaflets were going to do for me. Was I being naïve to expect that the service would have someone to help me? It felt that I had fallen by the wayside on the path of life, and everyone except my family and friends were walking on by.

I decided that this just wasn’t good enough, and have worked since then to improve things for everyone affected by cancer. It has been 6 years since I have been doing this whilst still receiving regular treatment personally, and I am truly shocked at the scale of the problem. Naturally over seven years, I have seen an improvement, but in an area that has such limited resources I still see much duplication of work, and poor communication between service providers.

Anyone affected by cancer will tell you that it is life changing. The current official statistics tell us that one in three people are diagnosed, and in not many more years, that figure will rise to half of us. Most of us then become focused on our own health and don’t have the will or strength to become involved fighting with campaigns for better services as that is the time we need them! There are so many people out there that deserve better.

Survivorship is in many ways a nice problem to have, but a problem just the same. As more people live with cancer and less die of it, how can we help these people adjust to society again after their experience? We need to start finding a way quickly, or it will affect our social and economic well being as a nation. Most of us don’t want to be a burden on society, we want to be able to continue giving, for as long as we can, but speaking personally I have felt discriminated against. Employers, holidays, health insurance, car insurance, Department Of Work And Pensions, and many more all want to know the intimate details of my illness. All looking for ways to penalise me for being sick.

Can you imagine sending a CV to someone explaining that you have been sick for seven years? Then the DWP asking if I can walk in a straight line to test my eligibility for work! Of course we want to work like everyone else, but have treatment and appointments which makes it awkward in many cases. A majority of my friends have found it difficult to return to work even if their job has been held open for them, unable to cope physically with the demands of full time work.

Living well after cancer, means different things to different people, but like me I imagine most would still like to feel that we can play a useful part in society. However it is very difficult to do that without the appropriate support. I feel this issue could be improved from our initial diagnosis, where we need to be understood more holistically and less as a pack of case notes. Of course we want our clinicians to fix us up, but who helps us with the bills when we can’t work, or our relationships when our lovers become our carers? All these things are part of the same case and adding unnecessary stress to our already compromised health.

I know that laws have improved to cut down cancer discrimination, but it still exists in many areas. We need to work much harder as a society to have more empathy with people who must deal with these issues. Many of us don’t like asking for help!

To find out more about this latest campaign from Macmillan Cancer Support click Time To Choose

What is living well after cancer 1

Do you consider you are living well after your cancer diagnosis? What could be done to improve things for you? Have you managed to get back on your feet afterwards? As always I would love to hear your experiences, and please feel free to share them below.

 

 

 

The Grove Hotel Bournmouth

I am an official support partner of the Grove Hotel in Bournemouth. The only hotel in the UK specifically for people affected by cancer and other life limiting conditions. 

 

14 Comments
  1. I returned to work after treatment over a year ago, my employers have been hostile. I had to accept a pay cut, or try and take them to tribunal, with an uncertain outcome but certain stress and time. I ran into my CNS when it started, she asked how I was and I said I was having to fight so hard at work, and was so upset about the situation I could hardly think about the cancer, and my recovery. Although some legal protection is there people need funds and support to access it. I met people in similar circumstances at the cancer voices conference. As the retirement age rises, and more people survive cancer and treatment for longer working will increasingly be an issue for survivorship. The contemporary workplace is often an anxious place, with increased workloads worsening pay and conditions, and compulsory competitive overwork- not consistent with staying as well as possible. I am well qualified, experienced and acknowledged to be good at my job, but feel I can only fulfil my employers expectations by disregarding my health.
    I am only an example, other people I have been in touch with through Macmillan cancer voices have had similar experiences.

    • Hi Clare. Firstly I want to thank you for sharing your experiences which are so valuable and are read by both patients and professionals on this site.

      You are so right about the workplace being an anxious place, and not consistent with staying well. I never enjoyed that environment anyway and was fortunate to work for myself for most of my life, but of course this also brought an element of anxiety.

      I know of so many stories like your own which is why I want to bring this issue to the front, and thank you for helping me do that. My experience shows me that despite laws to the contrary, people affected by cancer are discriminated against.

      That is why I say that this is a society issue. Law cannot force people to change their perception of people with a long term illness. As more of us in the future will be affected we need to look differently at our colleagues who are sick. Not as a burden on the business, but as a human that requires support.

      As a society we are losing sight of the true values of life in the chase for more money etc. I guess it is hard to understand unless you have experienced it, which is why I am now so vociferous in raising awareness.

      I am not at all surprised to hear that you know many more examples like your own. My own experience is that at least 75% of the people I know have failed to make it back to any meaningful employment, myself included.

      Thanks again for sharing and I wish you well for the future, Chris

  2. Another piece I feel I could’ve penned myself Chris, I share your thoughts, experiences & observations. My incurable secondary diagnosis is relatively new so I am at the beginning of this experience and already I can foresee the challenges that will lie ahead of me, many of which you have described. As we have already discussed I look forward to meeting/speaking with you soon to join forces with a view to being stronger together. Keep well x

    • Thx so much Abi! It was nice to be invited to write a piece around this subject as it is such a massive issue for many. Now it is fantastic that many more of us can survive a cancer diagnosis, but it no longer good enough to just survive.

      With many more of us in later years to be diagnosed, this will be a big problem if we don’t start dealing with it quickly. When I personally got sick, I really did believe that we had a system in place and was truly shocked at how ‘hit and miss’ things really are outside of the hospital.

      I too look forward to sharing experiences and working together, as you are so right, we are stronger together. I’m not sure that service providers in the cancer sector consider that. It is certainly a very fragmented place which makes life difficult for the people they are supposed to be helping.

      Take care yourself Abi x 🙂

  3. Hi Chris,
    Another cracking blog and very interesting topic!
    I have just signed the Macmillan campaign, thank you for that Chris.
    Macmillan have been a great help to me financially. But like you, I had to search high and low for practical and emotional support. It’s out there but services are definitely overlapping, especially charities. At times I felt like the first person to ever ask for such support. This is not what you want when you are very ill. I think as time goes on it gets easier. But there are definite gaps to accessing support. I personally felt it was due to the nurse specialist who at my clinic in Kings was impossible to talk to let alone get any advice from. But that’s a sore point and one I would rather forget.
    Appointments with physiologists have been one of the most empowering and beneficial areas for me, in helping me to express my feeling and move forward. But it seems not common practice to be offered this support unless you reach breaking point. A lot could be improved if this support was more readily available. Various charities who offer complimentary therapy’s/therapist are also exceptionally helpful in dealing with anxiety, depression and stress. And there are so many out there, but there need to be a coordinating point of contact or even a comprehensive directory of services….now there’s a valuable piece of work! Charities if genuinely compassionate of the needs of it’s clients needs to be willing to inform of external service providers and provide and encourage partnership work practices. We need to be working together now and in the coming years as cancer diagnosis increases.
    Chris I hope that you have a great week.
    Best wishes
    Tricia

    • Hi Tricia, glad you enjoyed this piece. Macmillan talked to me about their new campaign, and invited me to write a piece around it. As you know, life after cancer is a subject very close to my heart.

      You and I have so many views in common, and the experiences you describe above very much mirror my own. As you rightly point out, there are services around but it feels that ‘brand ego’ from many charities is a stumbling block for patients looking for help.

      The services are mostly uncoordinated, and generally charities don’t signpost well to other organisations outside their own. My view is that everything is fundraising driven and not about sharing for the good of the patient.

      Also I find that health professionals have little idea of many of the services that exist outside of the hospital, another example of ‘silo working.’ The main issue as I see it is there is no one accountable for this area of care, which is now becoming a key area of survivorship. Everyone feels that someone else should be doing it, and no one is!

      You mention your experience with physiologists and I know exactly what you are talking about. However my experience shows that there is a dramatic shortage of this type of support, which is why access to it is difficult. It maybe an area we need to look at increasing in the future as survivorship increases.

      Thanks as always for sharing your own experiences so generously Tricia! Chris 🙂

  4. Your words really ring true Chris. Many older people affected by cancer tell us they feel lost after treatment and it’s one of the reasons that we’re so keen to see independent advocacy support provided whenever it’s needed. Keep up the good work!

  5. Thanks Marie. As you know I write from personal experience and years of talking to fellow patients. Things have improved slightly in that 7 years, but if I’m honest, treatment has progressed faster than support for people affected by cancer.

    As you know I think your work is extremely valuable as older people find their own set of unique problems when dealing with any long term illness. I’m so pleased to be in contact with you and your organisation and to be able to signpost people to your services.

    I would love to feature a guest blog from someone who either gives or receives services from your organisation. Thanks for sharing your thoughts Marie, Chris

  6. Chris,I just want to thank you for this blog, it helped me through my cancer,

    I got the all clear today, I know how lucky I am and feel for those that are still living with such a terrible illness,,,,

    Where there is life there is hope

    Kindest regards

  7. Fabulous news Pat!! Definitely a day to enjoy 🙂 thank you for sharing that news with me, I feel very privileged.

    I’m so pleased that you found the site helpful, which is so lovely to hear from a personal perspective. I started this site several years ago because I felt that there was a massive gap in this kind of support so I am delighted to be able to help in anyway I can.

    You are right about hope, and I have never lost that! Very best to you for the future, Chris

  8. Hi Chris, reading your blog felt like I was reading my own story. I’ve ran businesses, worked for some high profile multinationals and even managed some freelance consultancy for the European Commission. But I’ve been in-treatment since 2011, and like you have been at the brink of death a couple of times.

    I’ve been cancer-free for a couple of years now, but of course each time I have a blood test, I can’t help thinking the unthinkable.

    I was cured but I have to now live with the consequences: a clot that will never go away (I had six surgical procedures) , and necrosis caused by my chemo. I was treated for testicular cancer, but as an older man (51 at diagnosis) , I really suffered during the chemo .

    In my previous life I ran marathons around the world, but now I am waiting for my second hip replacement. I had my first in July of this year. The necrosis destroyed the femoral head of both my legs. It’s the steroid element of the chemo that’s problem – cuts off the blood supply to the bone and it dies. I walk with a stick and need a wheelchair for longer journeys.

    I was treated abysmally by the DWP and more recently by my Local Authority, who asserted I was mobile when in fact I was hospitalized and immobile for most of the summer (my left hip collapsed in May). I was on 90mg of Morphine following the collapse, and still take heavy pain killers daily. I’m trying to avoid Morphine as it turned me into a vegetable.

    Throughout all of this I have been cared for by my partner and I’m currently staying in her flat because my place is inaccessible (due to lots of stairs and inadequate heating – that’s another story). No help has been forthcoming (except from Macmillan who have provided therapy and a small grant during my chemo). I was too sick to apply for DLA, and naturally a recent application for PIP has been added to the 600,000 or so outstanding claims.

    Of course I have been made to feel like a scrounger – even though I paid tax and national insurance for 30 years, and was paid pretty well. The economic impact of cancer is one thing that is rarely touched on, in the mainstream media or in drama.

    I have experienced hostility from people on the street and on public transport. I walk strangely, I have a stick. I am vulnerable so not likely to fight back. I have osteoporosis (another chemo side effect) along with the necrosis , so if I were to be knocked or hit, my bones would snap. I avoid the rush hour naturally.

    What the future holds, I do not know. But I can’t see anyone wanting to hire a 55 year old with multiple health issues, anytime soon. If I had the energy and the health I would start an organization that actually employs people like me: highly skilled individuals, who are unable to commute or do the usual 9-5 . The technology exists, but I don’t think the funding would be forthcoming !

    Thanks for your blog, its nice to know I’m not alone.

  9. Hi Sean. Reading your reply I was also shocked to see how much common ground we have. Your physical issues sound a lot tougher than mine, but my own are in transplant rejection and complex in their own way.

    Your personal example is exactly what I am talking about, despite our health experiences we still have a lot to offer, and if society cannot see that then we are building big problems for the future.

    There is a lot of cheap talk about supporting people like us in the work environment, but that is all I see. Very definitely little action, and in this instance the law is a complete ass. Who would employ anyone with long term unreliable health?

    There is also pressure within the workplace if you are lucky enough to retain your job. Not only from management but also from colleagues who eventually get fed up with hearing about your health and appointments, and filling in for you when you are away.

    We need to approach this issue differently, as we will all be affected at some stage in our lives. You hit on a key thing about having the health and energy to do something. I have been doing my best with the practical support issue for many years and it is indeed difficult when your own health is compromised.

    You are very definitely not alone Sean, there are many more people affected by this than you might imagine. Thank you so much for sharing your own experience, as this site is read by many patients and healthcare organisations around the world. I am trying to improve these issues and when people share their own stories we begin to see the scale of the problem.

    I wish you the very best with your own health, Chris

  10. Hi Chris
    Thanks for your brilliant blog,which made me realise once again how lucky I’ve been, compared to a lot of other people who’ve been living with cancer. I had breast cancer in 2007, with two minor and one major operations. I worked in between but then I didn’t need chemo.
    Now I have bowel cancer, apparently unrelated. After an operation in May I’m having six months of chemo this time, which I think is much harder than “just” operations, where the difference between being ill and well is much more clear cut. But having a caring husband means I’m well looked after (spoiled in fact!) and working for a very supportive organisation which pays sick leave means that I don’t have money worries. I really sympathise with anyone who has to try and make do without this sort of support; it must be extremely stressful – goodness knows, the cancer itself is enough to worry about.
    Thanks for all your work in highlighting these issues. I’ll have a look at the Macmillan campaign now.
    Very best wishes to you, from Ceri

  11. Hi Ceri and thanks for your comments. It is amazing that after having cancer twice, you might consider yourself ‘lucky,’ but with the support that you talk about I would say you are. You deserve to be spoiled, btw 🙂

    Without my wife, I don’t think I would be here today, and certainly not doing this work. She has supported me since I got sick in every sense of the word, and continues to ensure that I can focus on my own health. It must be very difficult to face these things alone.

    As you are so aware, dealing with cancer treatment, side effects etc is tough enough, without the issues of finance and employment to think about. Most of my own experience, and from people who communicate with me via my social media channels seem to have similar issues, so it seems that you are in the minority, and very definitely lucky with that 🙂

    From that perspective it is nice to hear a positive story, and I wish you well with your treatment. Thanks so much for taking the time to share your personal experience, as it is great for others to read, and maybe help them understand their own circumstances better. Very best to you too, Chris

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