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Not being at work feels more destructive than the cancer that's stopping me. - Emily Macaulay [entries|archive|friends|userinfo]
Emily Macaulay

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Not being at work feels more destructive than the cancer that's stopping me. [Dec. 8th, 2015|07:43 am]
Emily Macaulay
(Or, alternatively, my counsellor is going to have a field day with me later!)

Last week I went into hospital. My modus operandi is largely that I try to avoid hospital as much as possible but when I let them have me, they can do whatever they need. Blood tests had been deteriorating over a number of weeks and I was feeling "odd", then it was suspected I had a pleural effusion. So off to my consultants and it turned out I needed a chest drain. That was relatively small and an in/out job. They also decided to put a PICC line in as the number of blood tests and meds going in were getting to the level that my arms resemble pin cushions. I had my normal set of scans too. Of most note was a pocket of fluid around my main brain tumour. This isn't unusual and wasn't a surprise. I've had this for a long time, it builds up, I get it drained and we repeat. That was until well over a year and a half ago when the doctors decided the risk of the procedure outweighed the benefit (increasing my medication to counteract). Last week however my consultant saw the scan and decided the need was critical and so I was drained again.

The real impact of this activity last week though hasn't been the breathlessness, the discomfort, the increased fitting, or the pain. It has been that all those things stop me being at work.

I know that I am lucky. I love my job. My job is far more to me than a way to spend 37hrs (+) a week and pay my rent. I work for an organisation I believe in,with principles I align to. I'm not all "rose tinted glasses" about my work. There are times when things are flipping annoying about it, when it is frustrating, when it is like banging my head against a brick wall...but through it all it matters. And selfishly it gives me a purpose.

So when I'm not at work three things happen:

1) I feel like a burden to the rest of the team. This includes the rest of the management team, the customer service team, my second line manager and wider too. There's nothing about my role that someone else can't do but the operational element of it means that most my tasks have to be done on a daily basis, so if I'm not there someone else has to be doing it. This includes the rota'd early starts and late finishes. It includes problem solving as unexpected issues arise throughout the day. It means not being able to do all of their core role. They would say (I think) that this line of thought is "silly" that they are happy to help. But an objective view of the situation, partly in the current time (for reasons I won't go into but are complex), would concur that there is a strain caused by my being off work.

2) I lose my sense of purpose. When faced with long, unbroken hours of rest and recovery on my sofa (regardless of how many excellent books and films and TV programmes I can access) I don't have a purpose. I guess I should reframe my time and see the recovery as purpose. But I can't. Resting, particularly alone, seems like such a damn waste of time. Of course I recognise the argument that the more I rest the quicker I will be back at work. But this is cancer, that equation doesn't necessarily balance. This now may be my new "normal" and actually what I need to do is adjust to performing with this new physical aspect. Or rest may not actually quicken the recovery at all, that may just be going to take X number of days regardless of what I do.

3) I lose my sense of self. Because my job is one that requires more skills (largely generic ones at that) rather than knowledge, anyone can pick it up. And, as mentioned earlier, they have to. That can be hard to see when you're looking in, feeling too unwell to be participating. To see a colleague take on my workload, run with it, and deliver on it...that's hard. It's hard not to imagine that has an impact on how colleagues see me, not to mention how it may influence future decisions. This bit doesn't mean to sound ungrateful. If I knew stuff wasn't being done that needed to be done I would simply be unable to rest, and my colleagues that pick up my work do an excellent job of it and I am hugely grateful for that. But each time my self worth is knocked, just a little bit. I want to be considered dependable and the reality is, at times like this, I can't be.

This is all quite destructive for me, far more so than the actual cancer (on a day to day level at least). Being off work is not a time I enjoy, so yesterday it was particularly hard to go in with the intention of trying to do a few hours and knowing almost immediately it wasn't possible or appropriate. Again I am lucky that management tend to listen to me and trust me to make the right decision in relation to being at work. In turn I am always honest and open about how I am. I had, with a previous employer, the worst case scenario in this respect and it is something I never want to repeat.

So I came back to the flat yesterday and I rested. I had my medication levels tweaked by those in the know and a discussion about returning to work. A phased return plan was proposed, and accepted by management. Today I am back at the grindstone. And I couldn't be happier.
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Comments:
From: (Anonymous)
2015-12-09 10:23 am (UTC)
There are days when I feel peeved that I am not 100% fit and never will be again then I read your blog and want to give myself a big kick up the bum. Your struggle is a hundred times more difficult than my little discomfort and you face it with honesty and determination. As I have told you many times I am in awe of your resilience and determination. Thank you for sharing
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