Young adult cancer. Ann-Marie's story (Isolation)

Following my previous post about loneliness, which has had some incredible feedback, I just had to publish this account of a very brave young lady, Ann-Marie, who from the age of 4 has battled Ollier Disease and then at the age of 25 was diagnosed with bone cancer. Ann-Marie bravely wants to share her story through this blog, to raise awareness of how isolated people can feel, at the time they need support the most!
Some of our younger readers may recognise the roller coaster of emotions. This also emphasises that these emotions can effect you, at whatever age you are
This post is slightly longer than usual, but an incredibly powerful message!

"I fought the fight; I'm out the other side but what now?"

 So, it was a little while ago now but I made it through the last major and by far the hardest and most upsetting milestones on my bumpy ol' journey. F**k that was hard! It was very emotional; I knew the anniversary week of my surgeries/complications was going to be the hardest. That week in the previous December was so frightening and confusing, the plus side of being so ill at the time was that it was too hard to comprehend what was actually happening to me and I launched myself fully into fight mode.

 
I can spend the rest of my life asking 'why?’ but now I need to start trying to ask 'how?’

How do I move forward? How do I try and leave it all in the past and view it as a blip that happened in my life? How do I reclaim the parts of me that I lost along the way, and regain the big enthusiasm for life that I used to hold? And how do I overcome these feelings that have been suffocating me for so long?

 Self reflection is a right b**ch hey?! I know this all sounds very downbeat and probably not what you'd expect from gobby old me but I vowed to be totally open and honest about every part of this time of my life, even if the chapter I am about to explain was sugar coated for a while by myself, but there are lots of reasons behind that and my main aim in speaking out about my experience is to spread awareness of the psychological effects that can occur.

 
I spent quite a bit of time battling with these demons behind closed doors and only letting a few selected people in on my thoughts, although never quite fully, thinking that I must be going crazy but also feeling that I'd be perceived as somewhat ungrateful of my blessings, whilst so many people are out there suffering and would give anything to be in my position. ‘C'mon, man up’ I told myself; it's not the end of the world right? And no, I knew it wasn’t. I knew that things didn't always go to plan, I knew how loved and cared for I am – surrounded by so many family and friends willing me on, expressing kind words of encouragement and offering support left, right and centre, even people that I’d never met! And I knew how far I've progressed in this length of time but when you are caught up in a cloud of despair it's very hard to see what's on the outside.

 
The emotional effect that it's all had on me has been so isolating. Along with the fact that, due to my situation, it’s highly unlikely that I’ll ever get the longed after ‘all clear’ the fear of the unknown was at an all time high. It's incredibly hard to admit that something is not right when your mood, thoughts and actions become totally alien to you and at the same time completely out of your control.

 It was told that I was suffering from Post Traumatic Stress Disorder (PTSD) in December '11 whilst still in hospital, it's not unusual in my situation, a near death experience is not something I would recommend! I was displaying symptoms of this anxiety disorder and battled with very distressing thoughts on a daily basis but, as I mentioned before, I was still in fight mode so had getting back on my feet as my main priority. The thoughts did not go away and began to take over my everyday life, with every setback I experienced, the feelings would grow stronger and I had a massive year of forward rolls and set backs indeed. To be quite frank, looking back and knowing more about it, I can now see that I was completely engulfed by it.

 

I never expected this to happen, I expected (and wanted more than anything) to be one of those people that bounce back straight away, go and live life to the full after cancer treatment and achieve their happy ending. I did have plans at the beginning to do this, LOTS of plans. But with every setback I encountered it felt as if my life was being ripped to pieces in front of me, I wanted to know why things kept trying to hinder my recovery and it would drag me back down further into that dreaded dark pit of despair each time.

I questioned why this was happening to me and felt a great deal of resentment. I missed my old life so so much. Why did it all have to turn so s#!t?!

From the outside I guess it was not that noticeable to most people, I'd keep up a front because I was terrified of people finding out that inside my heart was breaking and I felt absolutely torn to pieces. Which is a classic sign of depression but I just kept thinking ‘don't let them down, keep the brave face on and do what's 'expected' of you’. It was a constant fight with my emotions and behind closed doors I was a total wreck, I'd lay awake at night over thinking, crying my eyes out because I just couldn't look forward and that scared me more than anything. My future hopes and dreams that I'd built up over the years were gone, just replaced with a blank. And my relationships with those around me, even my closest were beginning to buckle under the strain.

 

It was around May last year that I finally swallowed my pride and asked for help, which was the one of the hardest parts of the whole process. It's not easy when you go from being happy go lucky, taking things in your stride to suddenly not wanting to see people, stop doing things you'd previously enjoyed and sometimes going to sleep and dreading waking up the following day. Constant irrational thoughts like these would plague my mind. I was petrified that if I admitted what was happening to me that I’d let everyone that has been supporting me through this time down, I didn't want to be judged, I didn't want to be seen as a drama queen but I knew I couldn't go on living like this anymore and something had to change. Tbh, I felt really s#!t, most of the time.

Without sounding all woe is me, I've had some pretty awful experiences in the past and just ‘got on with it’ so it was very out of character for everything to come tumbling down around me but more so for me to allow it to. The 'old me' would have dug her heels in and told it to 'buggar off' but not as lightly as that.

 

Anywayz, after many gruelling assessments I was finally diagnosed with depression and PTSD (yep, don't do things by halves!). I was offered a place on a prestigious programme and have been attending for the past few months. I have only just completed the programme and without sounding all #ohmydayztherapychangedmylife about it, it really has helped me and I can see and feel the effects in my thoughts, behaviour and emotional reactions to situations. I know it's only early days yet so I must not jump the gun. Don't get me wrong, it's been really horrific in parts, emotionally draining and I still have 'off' days but different techniques used have been helping to ease up this messy 'ead of mine. A lot of things have happened recently that have coincided with the therapy too, so these factors may be a driving force that contributed to having a clearer head but whatever it was, I aint complaining!


 

 

I know that cancer can target anyone and people have to deal with it in their own way. You are not told about the emotional effects you may encounter, you are not told about the possible months you may spend crying wanting everything to just f••k off and give you a break. Of course you are not told this because you are expected to be strong and put all your energy into fighting.

 

You won't let it win but it definitely puts you through your paces!

 

And that's fair enough, it's expected that the main focus will be that happy ending but don't be afraid if this takes a little longer for you. When I was experiencing depression at it’s worst, I was convinced that I must be some bad exception to the rules and that I'd done it wrong because I didn't feel I could jump for joy at what should’ve been the end of my treatment, I was still living with the effects and being treated for various complications. I felt empty, lonely and frightened.

 Overall what I'm trying to say is that is completely NORMAL to feel this way, and not to beat yourself up about it, you are not a failure and there are no rules.

You could have the worlds biggest support network but still feel alone; this doesn’t mean you are ungrateful.

Help really is there should you need it and it may take a while to start experiencing the positive effects but you will be on your way to your own happy ending at some point.


I would like to thank Ann-Marie for taking the time to write this piece, and share her experiences. You can read more about Anne-Marie through her own blog, 'One girls quest to rave'