To most people its just a word, maybe they know someone affected by it, maybe that person is close or maybe its a friend of a friends mum’s aunts best friend. Most people have a story for you about that person and it normally ends with “but they survived and are doing so well now”.
Most people mean well and are just trying to connect with you on some level. I don’t love the stories. They mean little to me and rarely make me feel better.
See until you have heard the words yourself you will never know what they truly mean.
That one word changed my whole world. It made everything different and it could never go back to how it once was. It rocks your word in a way that is completely unexplainable. No words can truly describe the feelings and emotions you go through.
The mirage of words all the doctors threw at me made no sense. I understood I had a reaccurance and that it being so close after I had finished chemo it definitely wasn’t a good thing. The fact palliative care was being bounced about wasn’t didn’t sound good either. I knew the amount of doctors and nurses present probably wasn’t leading to anything positive either but no one said the words.
I guess telling someone they have a timeline, especially someone that is only 32 isn’t easy.
Non curative chemo.
Something that I am currently going through. Its not a cure. I got that bit loud and clear, but it might slow the growth or even better shrink the tumors that are there. Maybe even stop new ones from forming.
That is the only reason I am putting myself through this hell.
Why else would you willingly go in every 2 weeks to be poisoned. I was advised to do 6 rounds of FOLFIRI before more scans were done. I am coming up to my 6th round on Monday. Once that’s complete these scans will determine if I have to put my body through another 3 months of the hell that is chemo or not.
I want my life back.
I am facing extreme fatigue and nausea week in and week out. I look so well people have no idea the pain I am going through. FOLFIRI you keep your hair, a blessing and a curse, I have color in my cheeks and hair on my head. I don’t look sick at all. But inside I feel like I’m dying.
I look to ‘well’ to be sick and yet I am so sick I am dying.
Its a cruel world.
I sleep 10-12 hours a night and I am still tired. Not I’ll have a nap and feel great tired, tired to the bone, to the very core.
I question its validity on the daily, surely I can’t be that sick. I look fine, there’s nothing wrong with me, I just need to get on with it. If I was just more motivated and driven I’d be able to do it, I’m just lazy, its not that bad. Well that’s how I feel and what I tell myself anyway.
Every single night I go to bed and I tell myself, I will wake up at a reasonable time, I will get up and go for a walk, I’ll come back check my emails and socials and have breakfast, I’ll get on my bike and at least ride the flat route to Sumner and back (31km), I’ll have a break and a bit of a lie down and then go for a walk in the park or a 2-5km run. I know that’s a big ask on chemo but I should at least attempt a couple of those things. I mean comeon! I used to swim, bike and run in a day, I could even go to the gym. I’d do things, I’d get things done, I’d achieve stuff.
And then I wake up.
I struggle to wake up. Its a long process. It starts with only being able to open one eye. Its already well past 8am closer to 9am. I’ve already failed my ‘to do list’. I need to use the bathroom but I can’t move. Everything feels heavy, even my eyelids. It takes more than 10mins to convince the body it needs to move. I get up, it doesn’t feel like my body. Everything is heavy, its hard to get going, it aches, not your traditional something aches kind of way but in a way I cant even put into words.
I get back in bed because that feels like the only option. I take my pills, yes there are a lot of them, I scroll through my phone. I should be getting up, at least to make a cup of tea, but the tea is down the stairs and I’m not ready for that walk just yet.
I should be walking, I should be getting ready for a bike ride, I should be going for a run, I should drive to the pools, I could at least do an ‘at home’ workout. Yet I’m still in bed, upstairs not able to even make a cup of tea yet (if you don’t know me, my bloodstream is made up of 90% tea and hot choc).
Why can’t I just do it? Why can’t I just be like before? Is it the chemo? Is it the cancer?
I feel like there’s no time. There’s not enough time in the day. If I don’t do a run, ride or swim before a certain time I’ve failed. But then I can’t do them anyway so really I’ve failed before I’ve even started. I do something else and it feels wrong or bad because I should be training, I’m wasting time.
I have my bad week and then a ‘good’ week. The good week is slowly disappearing before my eyes. I’m still tired, but I shouldn’t be. I should be good, its my good week. I need to do things, I need to be doing things. Why am I not getting things done? Why am I still so tired. I should be fine, I look fine, why am I not fine?
Oh yeah I have cancer. The kind that doesn’t get better.
So really I am running out of time. I should be doing things, why am I not doing things, why can’t I just get on with it? Why am I not getting on with it? Why am I so lazy and unmotivated? I need to be busy. Everyone is busy. Busy doing things and living. Busy, the word people use like a badge of honor, like the more busy you are the better the person you are. I want that badge of honor. I want to be busy too.
Meanwhile my reality is I’m over here and I havent’ even made it down to make a cup of tea.
I try not to think about it but I am sad. I try to be positive and put a positive spin on everything and be upbeat, try to turn this illness into something good.
But I am sad, I miss my life, I miss having energy, I miss training, I miss being motivated, I miss being able to make a cup of tea without even thinking, I miss being busy, I miss that badge of honor, I miss doing things without a second thought, I miss being tired from being busy and getting to put my feet up because I’ve achieved so much, I miss doing that and knowing I’ll have a really good sleep and wake up fresh and ready to go.
I miss my life.
I miss it so much it hurts. My heart hurts.
My heart hurts for all the things I am unable to do and for all the things I’ll never be able to do.
I ache everyday in every way, for the life I’ve lost, for the life I’ll never have.
I don’t let many people into this part of my life, I like to try remain positive and happy and smile. I try to put a positive spin on things, I try to show people anything is possible. I keep it light and bright.
I want to help people.
But in the same way I wish I wasn’t in this position and didn’t have to help anyone.
I just want my life back.
I want to be normal.
But unfortunately that isn’t on the cards for me.
So I just
Until next time (and the last round of chemo before scans!),