Black tunnel

Monday, March 11, 2019

I'm not even going to apologise for not blogging because it happens all too often now.

I am in a very bad place. I'm not sure if anyone will 'get it' exactly but I need to at least try to get it down and out of me. Mish's death hit me hard, she did everything right and always pushed herself so hard to get through her health issues. We had become close since her transplant. Then suddenly this incredible life force who I felt so much of a kindred spirit with was gone. All the hopes I had of growing our friendship further, the places we would go, just having someone to talk to who understood, all disappeared with her.
I've since lost another of my friends the incredible Stacie, another bright intelligent woman and another acquaintance from my hospital also passed. I feel tbh, that death is so close. I talk about it a lot, I worry about it a lot and my family tell me not to talk about it so much but it's kind of understandable in a way. I have been dodging serious illness and death for at least10 years, my whole life really but it's become very real these last 10 years. I'm under constant threat and on top of that my friends are being picked off one by one around me. 

Facing your own death is a very sobering experience. It makes you fearful and anxious and scared. It makes you look back on your past, your present and trepidatiously, your possible future. You think of all the things you wish you'd done, admittedly they are narrowed down to the most important things but you always wish you had more time. Cancer seemed to shock all of those feeling into turbo drive. How could I possibly survive that on top of everything else. And I am so grateful I did. 

But it's a bit of an anti climax. And it's like being dragged down a very dark hole. To spend your whole life fighting so hard to live gives a great importance to each day. However, fighting for your life so often, diminishes your body making each day more of a struggle. This is not said for pity, I hate pity, but it occurred to me the other day that I have never had a day feeling really well. I can't imagine not being fatigued, hurting or something else like breathless, nauseous, or something similar for a whole day. Let alone a whole life. I can't imagine going to hospital maybe 5 times in your entire life. I read a blog post or article I can't remember now about how this woman, same age as me, went out and felt ill. She said when you feel poorly, you just want to be in your safe place at home. This was huge for me. I always feel fragile, vulnerable; there's always a good chance I'll need to rush to the loo, or not be able to talk for fear of being sick, or feeling so rundown and exhausted I don't know how I'll get home. No wonder I feel so anxious when I'm out and about! 

I have to face the fact that it's very likely that cancer will come back to visit, I'm still on the drugs that caused it because without them, ironically, I would die. My lungs could still suffer rejection. I could have to put my life on halt at any moment and start very aggressive treatment. Plus as described above, I would say the strain of treatments and illness have left a big impact on my general health now and I accommodate things that most people wouldn't even think of. Since chemo I feel as though in my painting the colours have faded, everything about me is a lot dimmer than before. I find daily life a lot harder now. 

 Yet, knowing I'm not going to grow old, seeing in very vivid detail my friends who have the same hopes and fears as me die, just makes me want to live. Really live. Again, not big things but important things, things that mean a lot to me. To go out, to see friends, to travel a little. I have always wanted to be an actress to be in musical theatre, I always pursued it after every knock back, every halt to deal with health, I could never let it go. I think that means it was meant to be mine. It's a passion that I still can't let go but in the darkest quietest corner of my heart, I know it is one of, if not the biggest thing that my health has taken from me. 
Relationships pressured to the max, no possibility of children, a limited number of years, but that will always be my biggest regret.  

Most of all I just want to be happy. I'm not happy. There are times when I'm happier, but mainly it's a very dark place right now. Imagine all of the above, the Ct scans to check for cancer that roll round too quickly, the daily body check to see how these lungs are doing, and the fear that goes with it. The daily deluge of symptoms that often rob some of the joy from happy situations and means that so much planning is involved that often events lose a little sparkle. Then the fact that you feel weak and hopeless, that potential has dissipated away. That I can't be normal, pay rent, have a full time job, have a part time job, be married (honestly I couldn't take all this baggage into a new relationship and why would anyone want to deal with all this?) have kids, have your own home, independence, a life like anyone else. My reason to get up every day can't just be to fight to stay alive. 
I have good things and believe me or not I am grateful for so much of my life and what I have. 

But I need that reason to get up in the morning, something to make it worth fighting for that's mine and no one else's. I've tried to go big, to the very basics and everything in between but lately, it feels like any little idea I have that I think might be something I could grab on to and find fulfilment in just ends in a dead end. I've never been able to sit around with no purpose, and while I adore helping others, I really feel this time I need to do something for me.

I don't know how I go forward from here, but I'm so tired of going from one disaster to another. The last 5 years feel as though my only achievements have been to survive what should have killed me. I want to live, I want to be here, but I want to have a purpose and find things to make me happy and right now, everything feels so futile.

To anyone who suggests it I am speaking to a counsellor, I just don't feel talking is doing anything anymore. 

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3 comments

  1. You are brave, and strong, and inspirational. You know that you're an incredibly skilled writer? Not many people could be so articulate, impassioned and thoughtful, or convey their situation so vividly using the written word. Your audience are here, waiting for you. Sing to us on the page. Anna xxx

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  2. My goodness, what a lot you have to deal with. I can’t offer advice as I have no experience of your illnesses but all you can do is keep living your best life. And keep talking. It’s natural to feel the way you do. It’s a huge burden that you carry. xx

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  3. You are doing so well with what you have been through and you are an inspiration to others: Asides from your singing, your cake designing and making is acceptional. I know when you are down and uninspired, how difficult it can be to drag things you love constantly back into your life. However, I also know that all my arty interests be that writing, singing, painting, making and creating, have always been my thing to turn to and uplift me again when the stakes are down. Let your creativity shine and I believe that something good will come out of it for you. Nicola x

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