Coming to terms with it at 24, help please

Hi there,

Hi there,

Thank you for sharing. I can definitely relate to what you are going through. I survived ALL, diagnosed at age 4 years and eight months, in July 1985, treated with chemotherapy and cranial radiotherapy. I am 35 years old now and I have only recently received some help in dealing with the long-term side effects of my cancer and its treatment. And when I say help I mean I returned to the long term follow up clinic at Westmead in Sydney, Australia, but only because I was searching for answers. And I also sought out medical advice from specialists for my physical restrictions (nerve pain).

I don't really think that my cancer affected me until I was in my twenties. I have also lived with depression and anxiety as long as I can remember. The anxiety more so in the last ten years. i started to question why I was depressed and I finally realised that I could not rule out my history of childhood cancer. And then a close friend of mine pointed out that my experience of childhood cancer was actually a childhood trauma. And no one had ever suggested this to me before. But she was right. I had experienced a childhood trauma, even if I didn't remember all of it. And I had never dealt with it. When I was younger I remember joking that 'hey I had cancer and there will be long term side effects that the doctors don't even know about yet'. Brilliant!

And yes, growing up I just wanted to lead a normal life. But I developed severe nerve pain in both of my hands, arms and neck when I was about 20 years old. I was working full time in an office admin job at the time and doing a lot of typing. So naturally my pain was just thought to be repetitive strain injury. And I had to leave this job because of the pain. Anything repetitive irritated it, so I've had to avoid certain jobs over the years and had to leave many jobs because of my pain and it had come down to trial and error with me questioning what on earth would I do as a career. 

I only recently (in 2015) received a diagnosis of Small Fibre Neuropathy (SFN) after many set backs with specialists. My tests often found no results, which was extremely frustrating as there was definitely something wrong with me. And I only convinced my Rheumatologist to say that it was Small Fibre Neuropathy, because he had also diagnosed me with Raynaud's phenomenum and Erythromelalgia, which you can actually see, and they are thought to have an underlying cause of SFN (There is currently no testing for SFN available in Australia). Although I am very grateful to this Rheumatologist as he is the first doctor who had instantly linked my nerve pain as a long term side effect of Vincristine, one of my chemo drugs. And to have this verified was a huge relief. And now yes I still have to live with this pain. But I finally know what it is after all these years.

I'm also not an overly social person. I am a writer, so I like my own space. I am single, never married. Only engaged once at age 19. I eventually broke it off as it just wasn't working. And that was the hardest thing I have done at that point. And I haven't had a serious relationship since. I'm not sure if it is me. I often feel socially disconnected when I go out with groups of friends and this is hard to explain. I don't know if it is because I am still figuring out what I am doing with my life or if I am just like that.

I have mixed emotions about surviving cancer, and too have avoided talking about it up to now. And yes, there is a strange public perception that once a kid is cured of cancer that they will lead a normal life. Because it will only be normal to a point. I find it awkward when someone finds out that I survived childhood cancer and they congratulate me for surviving. I'm like thinking 'okay, I survived! Whoo hoo ... they must think my life is great and because I survived such a horrible experience that I have to succeed in life and live up to a survivors name.' And okay, some people do get through life as a survivor just fine. But that itself has stopped me from talking about it in the past as my story is not so positive and I haven't succeeded in life yet, so why would anyone want to hear my negative survival story. My emotions vary from frustration, anger to exhaustion and even sometimes wishing that I hadn't survived. But that doesn't mean that I don't have dreams and passions. I just find life extremely tiring at times, and I do also worry that my pain will only get worse with age. I just have to deal with it one day at a time.

Also the smell of strong antiseptic used to bring on sudden memory of the hospital for me. I think this has decreased with time and by returning to hospitals for various reasons such as follow up visits, visiting someone in hospital, and I did five weeks of uni prac in a private hospital. i found this confronting at times, especially when it involved children. But I do think that it helped to desensitise the experience for me. Although i did decide not to pursue that line of work, so, no I wouldn't want to be there all of the time.

You are definitely not alone in your experience, and I believe that you are taking the first step just by talking about it, and coming to terms that it is part of your life.

Then by knowing what we are dealing with we can link all these issues together and know when something is related to our medical history. Then we can find the best way to manage it so we can live our lives to the fullest and continue to pursue our dreams and passions in life. 

I have just recently started a blog about surviving childhood cancer if anyone is interested. My aim is to raise awareness of the long-term side effects of childhood cancer treatments and the health issues that are facing survivors today. And to also connect with other survivors and talk about anything that is of concern, big or small. I will be talking about a range of topics and would love your thoughts and feedback. My first blog can be found at: http://megandaymond.com/an-introduction-why-write-about-surviving-childhood-cancer/ 

I hope that I haven't rambled on too much and that this is partly helpful to you. I do find that writing about my experiences and thoughts helps me a lot, even if I don't always share everything I write with others.

Cheers

Take care

Megan