my 5th bday_lowres

My 5th Birthday, 1985

This blog is the first of many about surviving childhood cancer; based on my own experience of surviving Acute Lymphoblastic Leukaemia, diagnosed at age 4 years and 8 months, in July 1985.

Why write about surviving childhood cancer?

I have many reasons for wanting to write about my cancer experience. There are many topics that I want to talk about and many things about surviving childhood cancer that I don’t think people quite understand. I am still trying to understand some things myself and it has taken me thirty years to find answers to some of my own questions. So, part of my reason for writing is to get all of my thoughts and feelings out of my head and record them for later reference. Otherwise there is just too much to think about when someone asks me about my life and my problems – because my life is complicated and I don’t have a simple answer.

I find it hard to explain my situation because it is not just related to one thing – it is a combination of many things linked together. And it would take me hours to explain my entire health history to someone who is simply asking me what I do for work. I’ve done many different jobs and I have had to leave many jobs due to health reasons and physical restrictions and it can become quite exhausting when I need to explain it. So, that, in itself, is part of the reason that I write. Then if I ever find myself in a situation where I don’t have the time or energy to explain something, I can simply say, ‘read this, and then maybe you will understand’.

To Raise Awareness About The Long-term Health Issues That Face Survivors of Childhood Cancer

The number of childhood cancer survivors is growing everyday and the main focus has primarily been on sick kids and how to cure them of cancer. And this is absolutely necessary in the fight against cancer. But my concern is that once a child is deemed ‘cured’ and has proceeded through their long-term follow-up care and become an adult that they then will just become another survivor. And there is the disturbing public perception that once a kid is cured of cancer that they will lead a normal life. This is wrong! And it should be a concern.

infographic(s) courtesy of CureSearch for Children’s Cancer

A survivor of childhood cancer has experienced a childhood trauma and there will most likely be long-term physical and psychological side effects from their treatment that may affect an adult survivor’s future health and happiness.

The health system is already struggling to support the general population and long-term follow-up clinics for survivors are bursting at the seams. The number of survivors is growing everyday and I believe that the health care provided to survivors is lagging, resulting in many survivors not getting the support that they need and/or survivors are then reluctant to follow up on their own health care.

So while we celebrate breakthroughs in childhood cancer treatments how can we not think about the long-term quality of life for these survivors.

Because Surviving Childhood Cancer Still Affects Me Today

I don’t believe that I would be writing about this topic if it wasn’t affecting the way that I live. If I didn’t suffer from depression, anxiety and chronic pain (small fibre neuropathy) in both hands, arms, shoulders and neck, then I would be leading a completely different life right now. And being a survivor of childhood cancer would be the furthest thing from my mind. Other than the routine checkups and tests, of course – that never seem to come up with any abnormalities – I would not have to think about it at all. It would simply be a small detail on my medical history that I should never need to tell anyone about.

Wow. That would be great! And if that is you, I envy you, but at the same time I am extremely happy for you.

But if you are like me or at a point in your life – maybe thinking about a career and/or starting a family – when you are having concerns or questions about how your medical history will affect your future, then talking about your cancer experience is something that I recommend you do. Because as with any medication, traumatic injury or surgery there are most likely going to be long-term side effects – including the long-term effects of your cancer treatment.

My treatment included cranial radiotherapy and chemotherapy. And I believe that my nerve pain is a long-term side effect of some of my chemotherapy drugs. It took me over fifteen years to link my pain to my cancer treatment! And I had to ask the questions! I had to ask for referrals to specialists and bring up the possibilities of my health conditions being long-term side effects of my childhood cancer treatment.

It took me a very long time to get a diagnosis for my pain and I wouldn’t wish my struggle to find answers on any other survivor. And this is why I feel the need to write about my experience as a survivor of childhood cancer, so that maybe I can help other people avoid having to go through a similar ordeal.

I urge you to ALWAYS REMEMBER to mention your medical history as it may just hold the answer to your current health problems. And then maybe you will be able to find a solution.

 Connecting With Other Survivors

I want to be able to connect with other survivors of childhood cancer and I believe that writing a blog will enable me to do this. For years I have felt alone in my experience and have not known any other survivors who I could talk to. This made me wonder if there are other survivors out there who are in the same situation as me. And are they waiting for an opportunity to talk about their own experience.

Now I do realise that some survivors will not want to discuss their experience of childhood cancer, and that this is not a topic that they would ever want to think about or stir up bad memories of. And that is completely understandable. It took me a long time to realise that I did want to talk about it, and then I didn’t really know how to approach the subject.

So, today I am starting this journey and I invite you to join me.

You don’t have to comment or share any details if you don’t want to. This is a blog for anyone who is interested. And I would also like it to be a place where survivors can discuss any experiences or concerns that they may have with other people who have been through a similar experience.

What do you want to discuss? What are your concerns as a survivor or family member? Are there any topics relating to surviving childhood cancer that you want learn more about? Some of my future post topics will include the following and much more:

  • What are long-term side effects? Physical and psychological side effects
  • Memories of childhood cancer
  • Long term follow up: tests and procedures
  • Am I asking my doctor the right questions? Getting second and third opinions
  • Life expectancy; will my cancer come back?
  • The risk of developing other cancers or chronic health conditions
  • Skin cancer and sun protection
  • Depression and anxiety
  • Social disconnection
  • Negative emotions: anger, frustration, guilt, feeling like you are a burden on your family. Why did I survive?
  • Public perceptions about childhood cancer survivors
  • Connecting your current health issues to your childhood cancer treatment
  • Relationships and starting a family
  • Fertility and freezing eggs
  • Study, employment and pursuing your dream career
  • Learning difficulties
  • A life of trials, failures and achievements
  • Small Fibre Neuropathy, Raynaud’s Phenomenon, Erythromelalgia
  • Living with pain
  • Medications and weight gain
  • Weight loss and dieting
  • Health, nutrition and fitness
  • Health and beauty: Thin hair, teeth, skincare and more …

Please feel free to make suggestions for my future blog topics. My aim is to be as honest as possible about my experience and to help raise awareness of the health issues that are facing survivors today. Please leave any suggestions in the comments section or send me a personal email.

I love hearing from you and welcome your comments. 

Please be patient when waiting for me to respond to comments and emails, as my nerve pain can sometimes restrict my computer usage. I will aim to respond as quickly as possible, but please be prepared to allow a day or two. This timeframe will also apply to your first comment appearing in the comment section as first comments will need to be manually approved by me.

Comment Policy: Please respect other readers’ comments at all times. If your comment is rude, or it attacks another individual, it will be deleted. Trolls and haters will be banned without hesitation, the definition of terms is left solely up to me. Thank you for reading. I value your feedback and look forward to hearing your stories.