Wednesday, 14 June 2017

More than tired

I wrote the below about my cancer-related fatigue a few months ago and it's literally just been sitting in my drafts ready to post on the blog all this time. My fatigue is still pretty much the same so hey at least it's still relevant! I'm not really sure why I haven't posted it – maybe because it's a bit bloody wingey! But it was World cancer Survivor Day last week so maybe now is a good a time as any... 

One of the main side effects of my cancer treatment is chronic fatigue. Its frustrating. It's relentless and it's just not the same as the tiredness a ‘normal’ person feels.

At my age, of just under 30, I'm surrounded by people who are at the point in their lives were they are working every hour there is striving for their perfect career, having babies and looking after their growing families. 

I'm surrounded by people doing all these things and of course they are tired. Exhausted even. But this tiredness just doesn't compare to the chronic fatigue experienced after cancer treatment. 

My Cancer related fatigue (chronic fatigue) is not completely relieved by sleep or rest. So it doesn't matter how much I sleep. I can still wake up just as tired. 

My fatigue levels are often disproportionate to my activity. Meaning if I have a hospital appointment the next day I could feel like I've just ran a marathon. 

It often takes me at least 48 hours to recover from any given activity. If I have two hospital appointments in a week then I'll worry it's too much and I'll be knackered. Therefore there's no way I'm at the point were I could work a full five days a week. 

I have to plan everything I do now and I have to pace myself all the time. On a positive note this means I often prioritise the fun stuff and forget about the dusting.

I’m finding my chronic fatigue increasingly difficult to explain to people. Everyone rally's round you during chemotherapy but once that's done everyone expects you to bounce back and go back to normal. 

So what you're a little tired?

I recently went to the hairdressers. (I know right? I've been dreaming about this for months) I went to a Toni and Guy salon that had a hairdresser specially trained by Macmillan. He asked how I was coping after cancer treatment and I went to my ‘go-to’ response of “Oh I'm just tired all the time mostly”.

“Yeah but everyone's tired hun”. He retorted back. 

*Face palm*

I feel like that is the general consensus when I complain of tiredness. Just a general lack of understanding. Maybe that's my own fault? Maybe I should say “I’m struggling with cancer-related fatigue”. But then I just feel like I sound like a melodramatic arsehole. 

So I'm not sure what to do?

I used to get up at 5am to get the train to work every Monday. I was tired when I got home Monday night. However it didn't take me 48 hours to recover. I was still able to get up the next morning and do it all again. Chronic fatigue is tiredness like I  have never felt before. Maybe I should just stop calling it tiredness altogether?

I guess it's a lack of understanding from the people around you that can make life after cancer treatment a lonely and isolated place. But unfortunately no one gets an oncology medical degree when they, or a friend/relative, gets a cancer diagnosis.

Most people just don't understand what life is like after cancer treatment. 

I feel like everyone expects me to just bounce back grabbing life by the horns now because 'I've been given a second chance at life'. 

I'm trying. 

But sometimes I'm that tired and achy I can barely get up or walk down the stairs. There's many a night that I've stayed in the bath for two hours until Michele gets home from work as I just don't have the energy to get out.

When I  went to the Christmas markets I nearly collapsed before I found a seat. When I went to see a band after my last Herceptin injection it all got too much for me and I  had a panic attack on the train home meaning I had to get off and get a taxi home. I, obviously, don't put that all over social media though so no one knows that.

I don't want to be all woe is me but maybe the lack of understanding and empathy comes about because cancer ‘survivors’, like me, aren't talking about this aspect of cancer treatment. We don't want to winge about being ‘ a bit tired’ when we could be dead. But chronic fatigue is a real struggle for many people recovering from cancer.

And if you're reading this and you have cancer too. Maybe you're also struggling with cancer related fatigue and the people around you just don't ‘get it’. Know that I get it. The girls in my support group they get it. 

I understand how you feel. I understand what it's like to try and recover from cancer in a world where everyone is just a bit ‘tired’. 




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