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Coming to terms with it at 24, help please

bluehat
Posts: 4
Joined: Apr 2016

Hey all,

I have always religiously avoided these things, but I think that's part of the problem and why I'm here. I need to know if anything of this stuff sounds familiar because I realize it's starting to hamstring my life a bit.

Background: Army officer, 24, from New York. Had ALL as a kid around 3, went into remission quickly but was in and out of the hospital a lot for a long time with the remedial chemo etc., think it finally ended around age 8.

I need to know if any of the following sounds familiar, is it a problem, and how did you deal with it?

I've always religiously avoided Relay for Lifes, these blogs, anything at all because frankly this is something I want to permanently put behind me. I am ashamed that my body failed me in that way. I hate this "survivor" stuff because it trivalizes the experience we had in this false positive light. It was nasty and brutal and not something to be revisted. Next, walking into hopsitals, that specific smell, stresses me out and I get a little light headed at times, this has happened for the past 10 years or so. Then, in the past 20 years I think, I remember crying twice, once was out of anger, and the other was sadness more recently. And there's been so many sad things that have happened but I can't seem to access that emotion, and it worries me a lot. Lastly, when faced with stressful situations, I have this inate ability to shut down and turn off a lot of emotions, make a decision and drive foward. It's made me a great officer in many ways, and I liked that about myself. 

However this all came to a head recently for me, and putting it all together I think I need to start addressing the fact that I had cancer and what it's done to me long term mentally (maybe? has anyone else felt this stuff). A four year relationship I had ended for a lot of reasons in January, but one of the things I can't understand about what happened was how terribly I acted during the break up (the shut down, move forward thing happened). Like I loved this woman, couldn't make it work for many reasons but we still had four great years together. And then I found out some terrible stuff she had been going through after the fact, and I felt like the world turned upside, but I couldn't cry. And I realize I've never really cried, then I realized how I had acted with her, realized the stress thing in my personality (always been aware of it though), etc., and I tried to figure out why and if all this stuff was related. I guessed the whole ALL experience as a kid had something to do with how emotionally shut off I could be, and started there. But I started with googling "why can't I cry," PTSD stuff came up, then childhood cancer survivors come up, and the feelings of shame, not crying, etc. etc. were all listed and it was like getting knocked out, because I didn't think it was anything serious. 

Words of advice, help, shared experiences? Thank you. 

Megan80
Posts: 1
Joined: Apr 2016

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 :)

Estera
Posts: 1
Joined: Jul 2017

Hey ! 
Im soo happy i finally found this discussion, it was exactly what i was looking for. Im also dealing with a lot of similar issues as you! 

I had Hodgkins lymphoma when I was 14, thankfully i was one of the lucky ones. My treatment took about half a year, had both chemo and radiotherapy. This July I turned 22 its been 7 years since im cancer free. For the past 6 years I didnt wanna face anything to do with cancer. Its like the word alone was erased from my vocabulary. For some reason i didnt want to accept what had happened to me, instead worked so hard to pretend it was all a bad dream. 

Up until now, this year was sort of challenging for me mentally. I was never the most positive person in the room, often had to force myself out of bed and tell myself to smile and get on with my day. When I look back now, its like all those years I've been carrying this heavy bag over my shoulders not knowing why ?? (still am) Then one day (dont ask me how) it made sense. I realised everytime i had a free minute to myself i would think about my experienece with cancer. Once I noticed this, it all came rushing back to me ... 7 years later i think about cancer every day. This is because when I had it, my mind simply shut off i hid away from the reality like some say my body was there but my mind wasnt. I never dealt with what happened back then.

Im finding it hard to figure out how to deal with it now? Once its cured nobody tells us how to live with it ... Cancer definitely shaped me into a different better person no doubt about that and in a weird way im grateful for that. I notice little things in life that make me happy while others dont pay attention to or take it for granted in other words. But a coin has two sides, this isnt any different, while im grateful for one thing theres another part im less happy about. I feel very misunderstood, returning to school wasnt easy... I found it hard to adapt to my age group and never did. Cancer took my childhood away, most young girls worried about their make-up, clothes, gossip the childish stuff which is normal, but i had 0 intrest in it...  I thought it was so shallow and not important at all?? It made it difficult for me to join their conversations, but it didnt take long for me to realise its what i had to do if i didnt wanna be that awkward kid hanging out by myself!! So to this day everytime im around most of my friends i have to put on this mask and be super childish, something im not! I cant make friends easily, I tend to look for some depth in a person and where i come from its really hard to find haha Anyway.. i started hanging out with people waay older than me close to their 30s or in their 30s, I get along with them perfectly! But i noticed older people are a wannabe kids?? Then i find myself stuck in the middle... 

I think my main issue is in finding myself... People dont see me for who i really am and it saddens me because even if i tried to explain they wouldnt understand. I model on the side so people assume im one of those typical pretty girls that only care about themselves and dont give me a chance. My family is the same, Im constantly down because im going through all of this alone. They mistaken my quietness with being stuck up. Im not the one to ask for help i hold it all inside and yes i know its not the best thing to do. I just dont know how to explain to them that Cancer affects me to this day im afraid they will only think its my way to make them feel sorry for me, when its not. Cancer is a subeject nobody wants to get into, but i find my family so ignorant to my medical past sometimes. Theres a 'support cancer' towel hanging in the bathroom, they also watch tv programmes on it when im in the room. They assume im perfectly okay and think this stuff doesnt bother me. In other words im a bit of a loner just cant fit in! 

I have constant check ups at the hospital still, just like you i cant stand the whole atmosphere of hospitals it gives me shivers everytime i step through that door. Even when i find myself sick i will not go until theres no other option. 

I feel like i could go on and on about how it makes me feel, but im afraid to go off topic!!

So im gonna share what kinda helps me to deal with all of this... TRAVELLING!! i cant recomend it enough... It definitely helps me, that imaginery bag on my shoulders disapears once I get off the plane. I find myslef in a place where nothing reminds me of my history, a blank page where im about to create new memories and see things that I might have never had a chance to see... Sometimes its an expensive solution, in that case it doesnt have to be a different country. Go explore the country you live in get lost, interact with people be open to new experiences, move on from the past! 

Im also in college doing interior architecture which takes a lot of time so its another way that gets me through the day, keeping myself busy with something that i love doing! Anything to do with creativity helps me! But not to dissapoint you, it only helps me in that moment while im keeping myself busy. The thoughts of cancer dont ever leave my mind i tend to not think about it but then is that running away from it again ?? 

Id love to hear more stories about how people are dealing with their childhood cancer experiences, it helps knowing im not alone in this!! 

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