Feeling like being trapped in a cage

I walked into the lounge on Sunday evening to see my wife sat slumped on the sofa. We had been out for a walk at a National Trust property (Polesden Lacey in Surrey), and whilst the rest of us had gone for a long distance, she had managed a short way before the wind and cold had forced her to stop.

So we had met her at the cafe, where we all got a small snack. She had a childs jacket potato with beans, which came with a small side salad and coleslaw. Fairly bland you would think.

But it was when I walked into the lounge that evening that I realised that wasnt so. Even this innocuous combination held a risk for her, and she had been constantly aware of where the toilets were.

We know that she has an intolerance to cooked egg, alcohol, and developing the same for spices. But it can also be the case that combinations of food can cause an issue, making her sick, or having the food stick in her throat. She can also get tired at the drop of a hat, one day fine, the next struggling to get up. It is hard to tell what causes it.

This must be so hard to deal with, never knowing if you will be sick at a meal, or if the food will go down well now, but make you ill later. It must be so draining to have to deal with that at every meal time.

It has really cut down the food she can eat to a real minimum, leaving very little options. She is also a vegetarian, but craves meat now and then, which messes her mind up, and is another issue to try to deal with. She feels she is missing out on so much by being unsure about how her body will react to food. She declines invitations to meals out unless with close friends, and always has an exit route.

It is like being trapped in a cage for our family. My wifes cancer restricts so many things. It has stopped us from going out spontaneously, stopped us travelling abroad easily, stopped date nights, and basically left my wife moving between the lounge and the bedroom, as even the smell of food stops her going into the kitchen.

Ive talked about being worried about leaving my wife at home alone before (https://mywifehascancer.blog/archives/688) and I still am. Not because I worry she will fall now, but because I worry she wont eat unless someone is there to prompt her. The food concerns mentioned above are mentally restrictive. I now worry that she wont be eating, or if she does eat, she is sick or something sticks in her throat, and no one is there to make sure she is OK.

Her weight has gone down again as well. She was light as a feather anyway, so losing more must be taking her down to dangerous territory. This brings the concern that she doesnt have the reserves to cover those times when she isnt eating, and will also lack the strength to fight any infection.

It is the season for colds, my son stayed home from school on Monday with a heavy cold and sinus problems, but he is 12 and can fight it with a day in bed. My wife on the other hand if she catches is, may take a week off struggling to breath.

His illness coincided with me visiting a different office my company uses in London, rather than the office I am normally in 5 miles down the road. I enjoyed the trip, and it will need to be a more regular occurance, but it also reminded me of a problem with that longer commute that ties into the above. Were anything to happen, I wold be at the mercy of trains to get back and help, not the potential 10 minutes I usually have. It also means me getting back later, and has a knock on to collecting the children, preparing tea and so on. All the jobs that my wife would love to be able to do, but cant always commit to without knowing what her strength will be on a day to day basis.

Trapped in her own cage, restricted to our house without support to leave, restricted in her food intake, often unable to help physically look after the children. Cancer has done this to her and taken away all of these things that most people would take for granted.

Keeping Track

Current weight – 110.7KG (possibly higher as I havent been on the bike with not having a hot shower)

Books finished – none yet

New music listened to:

  • Ash – Race The Night
  • Captain Beefheart – Safe As Milk
  • The Cult – Under the Midnight Sun
  • Shed Seven – A Matter of Time
  • Bill Ryder Jones – Iechyd Da (Similar in feel to the Michael Head album a couple of years ago that Bill produced)
  • BC Camplight – The Last Rotation of Earth (never listened before, but this is melodic and tuneful, really enjoyable)
  • Black Grape – Orange Head (always great to hear Shaun Ryder, Pimp Wars in particular is a highlight)

Thanks

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