Monday, 18 February 2013

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.

 

So… ‘Ello, been a while innit?!
I haven’t posted in a while but not much had happened really, everything seemed to have slowed down in terms of any new health developments and I’ve been out n’ about in my wheelchair, happily getting used to my new freedom and generally smiling a bit more. See, look there’s me in me chair down the market smiling.
There is also a new addition to the Mullarkey family, I have a beautiful new baby nephew to coo over. He is gorgeous!!!!
Then last Friday I got a call out of the blue that an appointment had been made for me to meet with an Oncologist on the following Tuesday (6th). Hmmm, “Oncologist WTF?!!!!!” was my initial thought followed by “oh s#!t oh s#!t oh s#!t”. 
I hadn’t received the results of my lung scan that I had on the 14th of Feb and with my previous one I’d been able to discuss them over the phone. I had called my Macmillan nurse earlier that week and left a message but got no reply so as soon as I got the call for this appointment the alarm bells started to ring.
In my panic I called my sister who advised me to call my Macmillan nurse again. So I did and she told me that there were some new findings that needed to be discussed with an Oncologist so we could discuss treatments and so on. 
There were lots of tears that day, I had to ask my sister to tell my Dad as he had been calling me daily to know if the results were ready yet and as I was sobbing too much I didn’t want him to freak out. Seems like this is getting to be a regular arrangement now of my sister having to deliver the bad news to people cos I get all blubby with tears and snot flowing down my face. Sorry Una, I always seem to land you with the horrid bit. To be fair though, I think you get the cleaner task as Kiyral is the one that gets covered in my tears and snot, although I’m not sure he has clocked up as many times that my snotty red face been pressed against his chest as you have over the years yet. Anyway… yeah enough of the snot talk!
So, I let all the tears out and then started to get myself dressed up as Cyndi Lauper for Tristan and Lorraine’s 1982 Birthday party. No chance I was missing out on a party! As it turns out, my Dad hadn’t heard my sister properly as he works on a building site so he called me half way through me applying me slap so I had to tell him again but managed to hold the tears in as I didn’t want my make up to run… ah priorities!
Bloody hell, I do ramble on don’t I?! My sister reckons I’d be a nightmare at a support group cos I wouldn’t let anyone else talk… haha, it’s true. Maybe that’s why blogging is turning out to be a good option cos no-one can interrupt me! Please bear in mind, it is very late and I’ve had all of my medication for the day! At least Kiyral is getting a bit of peace whilst I type away.
Anyway I had a wicked time at the party, got on the rum, saw loads of my friends and tried to forget about the whole thing.
So, Tuesday came and I hadn’t slept all night. Just layed wide awake thinking about things and wondering if I had the strength to actually start fighting again and facing treatments. 
After a long car journey of forcing my sister, dad and boyfriend to listen to my overtired ramblings we got there. 
I was really nervous about meeting the Oncologist as I’d googled her and saw that she specialises ‘exclusively’ in chemo and radiotherapy for the treatment of sarcomas. Una has told me off for googling cos I always freak myself out… like when out of curiosity I insisted on watching that youtube video of a knee replacement. Or convinced myself that when I have a baby I’ll get cancer again, actually I still need to confirm that one.
I decided to take all of my ‘entourage’ in with me. My dad, sister and boyfriend have been to all of my recent consultations with me which is very important to me as we are a very close family. There are no taboos with my family believe me! 
So the original nodule I have on my lung has grown by half a millimetre and there is a new area of suspicion which appears to be much bigger. At this point the Oncologist is unsure of whether this might actually be a chest infection that I wouldn’t have shown any symptoms of as I was on so many antibiotics. At the moment there is not really anything they can do. Obviously I want them removed but if the surgeons went in to try and find them it is very unlikely they would as they are so tiny. 
Sarcomas are not always chemo sensitive either, especially at this size, so they don’t really want to consider that should things progress which is a relief for me.  
There is a new drug that is due to be released that targets sarcomas but they are unsure of when.
For now they want to carry on monitoring me closely and I will be rescanned in three months. That will be the last scan for a while as they want to cut down on the radiation so will start using X-rays after that. 
These tumours are usually very slow growing so if it gets to a point that they are big enough to show on an X-ray then action will be taken. Radiotherapy is an option if the worst comes to the worst but I am just hoping none of this will be needed.
Afterwards my Macmillan nurse came to talk to us and advised me to “just go and live your life and forget about it for now”. She is so lovely and I’m really lucky to have her looking after me.
So, I now need to try and put all of my energy into getting my leg moving, only a few weeks left until I am admitted for my physio ‘bootcamp’ - and I tried on the disco pants the other night and they still fit. I was fearing I’d got too fat for them but luckily I haven’t. Oh the urge to rave! 

To be honest I am feeling confused and frustrated. I know it will get easier but it is like a dark cloud that looms over. I feel in limbo, once again, as now I ‘might’ have cancer in my leg and I ‘might’ have it in my lung. It’s the uncertainty that gets to me and all of the ups and downs. It’s hard to just switch your emotions constantly from happy to sad, from sad to happy, to frustrated and angry back to relaxed and calm and so on. All I can describe it as is a whirlwind of emotions and fears and at times I escape and other times I seem to get sucked in again. To me it feels more of an ‘inconvenience’ than anything.
As I’m sure anyone that has been through cancer treatments would tell you, the words that you are constantly yearning to hear are ‘in the clear’. And as I’ve explained previously that may never happen in my case which is rather crap.
In a way I wish I didn’t have to have this appointment at this stage but I am so happy with the treatment I am receiving as they are keeping me updated on every new finding and making me feel safer. And I was happy to meet the Oncologist too, as my initial fears of what she would say have now dissolved.
These feelings will pass I know and as I’ve said before once I’m up and about on my feet it will be a lot better.
I’m not looking for sympathy, I am just saying it as it is. I’m not going to lie, these things do f**k you up every so often so the only way to be is open and honest about it. 
I am far from unfortunate, I am very very lucky as I am surrounded by wonderful family, friends and my boyfriend who all support me and I can talk to. And an amazing hospital taking care of me.

But yeah, that’s what’s been going on lately so thought I’d update as it’s been a while innit.

Over and out :)



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'
 

2 comments:

  1. Hi could you share my blog with Ann-Marie please As I'm also a young adult who had bone cancer. www.copingwiththebigc.blogspot.co.uk
    Feel free to follow my blog too if you want. Find you brought My name is NOT cancer.
    Great blog btw! Becki x

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  2. Hi Becki

    Firstly, I would like to thank you for getting in contact, and I'm pleased that you like the blog, TUx. I will share your details of course, with Ann-Marie, and I am sure she would love to be in touch with you. This is the beauty of social media isn't it. We have all found each other and are able to share experiences.That is the very reason that I started this blog

    Everyone blogs differently, for different reasons, and I absolutely love your blog too! I try to have a large variety of experiences, as we have a wide age range of readers across the world.I am very aware that this is a convenient platform for young people affected by cancer, and as the weeks go on I am finding more and more who want to share their experiences.

    There are so many incredible stories out there, I just enjoy putting it all together, so that we can all learn from each other.

    Please feel free to join the blog at the bottom of the page,where your logo will appear.As always, it would be great if you could share this blog with your friends.I look forward to welcoming you back soon. Thanks again, Chris

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