The Hidden Costs Of Cancer

The Hidden Costs Of Cancer

When I was originally diagnosed back in 2007, my mind initially turned to finances and work. It wasn’t the disease that frightened me, but the fear of not being able to provide for my family. Of course we have got by since then, but not without much stress and worry over a long period. I have talked about the cost of serious illness frequently, and not just in financial terms, but the below piece from Sacha shows us in very graphic terms the impact her son’s terrible illness had on her family and friends.  

“The conversation with my closest girlfriend 8 years ago is still crystal clear, after my husband and I had finally got home after six weeks on the Children’s Neurosurgical Ward at superb Southampton General Hospital with our eldest son DD. That six week period had contained two massive brain surgeries, an aggressive cancer diagnosis, post-operative meningitis and planning for 15 months of combined intensive chemotherapy and radiotherapy. My girlfriend said, “Have you thought what you’re going to do about money? I mean even the parking is a fortune, let alone the petrol all that way.”

I was in succession shocked, embarrassed, furious and then the penny dropped: she was right. What were we going to do? I didn’t want to think about horrible money, I just wanted to focus on getting our beloved child through this appalling, life-saving treatment.The hidden cost of cancer However if we ran into debt I could see our already stratospheric stress levels go critical. We had two other children, we were both self-employed musicians (mostly – I also write, do garden consultations and cook on occasion) with no job security whatsoever.  I stammered and basically tried to avoid replying because I had no idea what we were going to do. No sleep means appalling decision making and adrenaline and cortisol add to the havoc.

Fast forward 8 years and the devastation in all areas of our lives is clear – emotional, physical, mental and financial. Our son was one of the unlucky 25% that do not survive his type of brain tumour. I had no idea prior to our experience that brain tumours are the biggest cancer killer in children and young people under 40. In financial terms the life insurance related to our mortgage covers critical illness in children but it was only enough to cover around a year of costs alongside the state’s full carer’s allowance but DD’s illness went on for 5 years. Furthermore because of complications arising from his late diagnosis, DD’s periods of remission were ruined by continual bouts of extra brain surgery. This meant our capacity to work during those entire five years was extremely difficult. Nor is there an equivalent of widow’s pension when you lose a child. You hardly wish to offer your services when you cannot predict when you’re next going to be in hospital and your mind is completely elsewhere or you’re struggling to function through grief. In fact my husband actually lost his main job in the months running up to DD’s death during London 2012. He was not alone in this – I met other parents this had happened to. And yet I would say that the teaching, campaigning and writing work I did manage to do saved my life in terms of my own mental health.

The physical effects of such emotional stress are shocking. It had been my husband I ended up calling an ambulance for at 2am a year into DD’s chemotherapy protocol. He had stopped breathing and had gone blue. The hidden cost of cancer 1The consultant at A&E diagnosed with what is commonly called ‘hysterical asthma’ where stress has caused the patient’s throat to shut. He was fine once he understood that even if he passed out, his throat would then relax and he’d be okay. But I consider us lucky. There was a Mum on the children’s cancer ward with cancer herself, one I met had recently been diagnosed with Multiple Sclerosis in her early forties and her husband had recently left and another, a single Mum, was running between a local hospital’s acute heart ward for her elderly Mum whilst her teenager underwent cancer treatment at Southampton. Parents were regularly hauled off to A&E having collapsed. Marriages broke down; I heard of suicidal siblings. And yet there is no organised psychological support in place for families and carers. You have to know where to find it.

Charities are now trying to fund networks of practical and emotional support for families during and after treatment or a death during the struggle to regain anything like a ‘normal’ life – the fight for the ‘new normal’. It’s made difficult as a carer/parent by how hard it is to ask for help. Don’t ask me why but we all seemed to think, as Mums, we should be able to do a better job coping! But why on earth would you be able to cope well with such a barrage of problems? And once one big thing goes wrong, it’s amazing how all the little things start to go wrong and pile up.

 So when AXA PPP healthcare offered me this opportunity to raise awareness about the problems facing parents/carers, it was a suggestion I was determined not to turn down. As I say, we were lucky: our family, friends and community formed a consortium to financially (and emotionally) support us all those years but I worry about people who have moved to a new area and don’t know anyone or with no family to speak of. My best advice if you know a family like mine is to check they do know where they can find practical support with the charities and offer help where a simple yes/no is the answer and always to take any pressure off the offer.”

I would like to thank Sacha for sharing her incredibly moving insight into these unique issues. By sharing, we can all learn something and, our experiences can be used positively to help others, and I wish you and your family well as you try to deal with ‘the new normal.’

*Headsmart seeks better outcomes for children & young people with brain tumours through earlier diagnosis

 

 

 

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. 

 

9 Comments
  1. I LOVE FB for being able to raise issues that people find so hard to talk about and get help where it’s needed through connnecting with other communities. Bless you Chris for letting me guest blog. I know often people wish I wouldn’t speak but if I don’t no one realises the problems and then they can’t be addressed. I had no idea that brain tumours were the biggest UK killer disease 2-24yrs old and due to UK late diagnosis that so many children & young people (and adults) were being unnecessarily disabled or dying as a result. Text SMART to 81400 to get the symptoms link on yr phone or visit the page/website HeadSmart XSacha

  2. Hi Sacha, life can be strange at times and it is incredible how we were introduced to each other. Our personal experiences have meant that we now do what we can to make things better for people coming behind us. Your own story was incredibly powerful, and I was pleased to be able to share it. There are so many unseen costs to cancer, which people find it hard to understand. I was also self employed, and not being able to work was a massive blow to me. If there is anything further I can do for you and your community, please don’t hesitate to let me know! Chris x

  3. Thank you so much for sharing this! People simply do not understand what life with cancer is like! Cancer impacts every aspect of your life–your friendships, relationships, the rest of your health, your finances. No one can cope with a barrage of events of this magnitude.

    I have found that people don’t want to hear about any of it. It’s somehow too threatening. It suggests failure (when in fact it’s overwhelming courage) when life isn’t picture perfect. And nothing about life with cancer is picture perfect.

    This week is Thanksgiving in the States. I only hope that people will pause long enough from shopping, selfies and such to show some compassion towards others and perhaps even act on it. The smallest act of kindness can be so large when someone is hurting. And everyone is hurting at some point.

    As always Chris, some very real insight into cancer. Thank you and Happy Thanksgiving. You’ll all be in my thoughts this week.

  4. Hi Pat. It is always great to share experiences, which is why this site exists, and I’m delighted to be invited to host this powerful piece. As you say cancer impacts our lives in so many ways that people just can’t understand it. We both have seen the issues from a personal perspective and are doing our best to help others understand.

    With or without cancer it is so important for us to show compassion to others and I understand what you are saying here. It seems that we are slowly losing touch of the real meaning of life.

    Of course we can’t walk in someone else’s shoes and I guess that it wasn’t till my own personal experiences that I truly understood the real impact in my life.

    Happy Thanksgiving to you Pat, and your contribution to this blog is much valued! Best as always, Chris

    • Likewise, I think my sense of compassion has been heightened by my own experiences. And I do fear that we are losing touch with the very human side of life, as we all become attached to our “devices”. Have a wonderful week, my UK friend!

  5. I was fired for having cancer and being out with late term effects

  6. Hi Bob, I’m sorry to hear what happened to you but unfortunately I hear this issue constantly, which is why I want to get it out in the open! How have things gone for you since that happened?

  7. I was diagnosed in 2011, remission for 3 years and just finished chemo for the second time Follicular Lymphoma. I was forced into retirement and had to downsize my life. Not bad but could have gone better if I was treated like a human from a company I dedicated 7 years in a management role. I forgive but will never forget.

  8. We certainly have a long way to go as a society in understanding the employment issues of people affected by cancer! In my own case I was self-employed and haven’t been able to work since. I know so many who were employed and have either resigned or been forced out of the job they were doing. Many have had to accept a downgraded role. Personally I have dealt with that now and am grateful for what I have. I wish you well with your ‘retirement’ Bob.

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