What happens when living with cancer related fatigue

In response to my last blog on the declining impact of someone’s health (https://mywifehascancer.blog/archives/726), someone mentioned bucket lists and how they always seemed so irrelevant. I wanted to put down some thoughts on that.

I have known friends who have done lists of 40 by 40 or 30 by 30, things they want to achieve by a certain age. I think this is great, it gives a purpose, and hopefully a sense of fun to their lives. Most of them achieved the list as well, which is extremely commendable. However the bucket list of things you want to achieve during your life is a different beast.

This isnt just your life goals, but a tick list of things to complete. You may want to visit China or jump out of a plane. Often retirees will have a bucket list of holiday destinations they try to complete. No set date to finish it by unlike the 40 by 40, but you have the knowledge it needs to be done by the time you are too old.

The reality for someone like my wife, is that she had a list of achievements, and then was struck down by her diagnosis. Rounds of chemo and other treatment kind of takes away the ability to do most of things, and by the time you are able to get out and about, you find that travel insurance is too high, and you have less energy. Basically your reality is a shrinking world, and the bucket list items may be just getting up in the morning.

My wife does have a list of things she want to do, a mood board of short, medium and long term goals. These start very basic ‘get back to running’ and build up to travelling and working again. This is a way of her coming to terms and giving herself goals, but realistically even the short term are a stretch right now. She can barely walk five minutes, let alone run, but we will see how she builds up.

One short term goal is to do something during the summer, and we had a brief conversation yesterday. I had to explain that aside from the money (which would stop us doing anything right now), we cant travel too far as she doesnt have the strength. I dont want to go away somewhere and have to spend all the time looking after her in a hotel room. That isnt fun for her, as she will be worrying the rest of us are not enjoying ourselves. A staycation from our own home is the sensible option. I will be voted down I suspect, so need to scrabble and save somehow.

I honestly think she is suffering from cancer related fatigue, and thank god she has a blood test lined up next week which may help sort it. Cancer Research have a good article about this here https://www.cancerresearchuk.org/about-cancer/coping/physically/fatigue/what-is-cancer-fatigue. Fatigue is worse than general tiredness, and in my wife it results in her struggling to be on the go for more than maybe 20 minutes.

Carrying towels or washing downstairs is hard work, almost too much for her. Watering the garden is impossible as she cant lift the watering can. By the end of the evening (not day, I mean 7pm) she has to retire to the sofa to lay horizontal. This will be after just cooking the tea, putting on a load of washing and maybe mopping the kitchen floor. Nothing too outrageous, but simple tasks that she wants to complete for her own dignity and pride. The comedown from her daily activity before diagnosis is stark, and must play awfully on her mind.

By the time she is sitting on the sofa, her face will have a deathly pallor, grey and waxy. Her cheeks will drop, and her eyes almost roll back. I help her as much as I can, but crucially have to be aware that she needs and wants to do these things around the house. Her mind is still active, committing to things her body cannot complete. And this is outside treatment. As with so much of this disease, the impact on her is heartbreaking. A strong, powerful, independent woman has been literally brought to her knees.

On an aside, I was listening to the Warren Zevon song My Shits Fucked Up, and the line ‘You wake up every day, and you start to cry, yeah you want to die, but you just can’t quit’ struck me. He died of pleural mesothelioma in 2003, so his story has often rung true. His motto was eat all the sandwiches, a fine comment if ever I heard one.

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