It has felt like a strange weekend here. It is a bank holiday in the UK, which means we have the Monday off work. The kids are still on holiday, so I took them to play tennis on Saturday while the weather was fine. It is also our 2oth wedding anniversary (29th Aug), so naturally there have been lots of memories flooding my brain.
My wife has had a small victory today, in that she managed to get out of bed and come downstairs. She has lost a hell of alot of body weight, and has very little muscle tone left. Her body is like skin hanging from bones, paper thin. We try to fatten her up, but I fear it is a losing race for us.
She also now has some aches and pains. Maybe more pains than aches. Her side hurts by the kidneys, probably a hip joint that sometimes goes out, an old complaint that predates cancer. More concerning is her leg pain, and we are watching to ensure it isnt a blood clot. With the lack of muscle, I would imagine that everything is struggling to work as normal. She had been able to get out in the car over the weekend, but it was a real battle for her. Slow and painful.
I really dont know what to do on a multitude of fronts. Firstly and foremost is the need to get her checked out, and if she get much worse we will have to do that. We have delayed wrongly in the past, and paid the price for that delay with a coma and eventually a stroke. But I fear getting her to a hospital, as that feels like another length of time before she could come home, and we dont want to lose her. I want to end this phase of our lives, but dont want to not have her with us. Unfortunately, that is not an option though.
I dont know where to turn to right now, because A&E can end up being stressful and slow, while the local doctors can be hard to get an appointment. Dialling 111 for advice will just result being told to go to A&E. Which means her cancer hospital, despite it not having an emergency department, could be the right place.
Second on my worries is the thought of getting some extra help with her. I wonder at what stage you should involve a hospice, and think we are too early for that, but it has to be considered. She refuses point blank to have any contact or interaction with the hospice we have been point in contact with, so that is a conversation we wont be having any time soon. I cant continue to look after her nearly full time, and hold down a job, and do everything else.
I feel I have all of the world on my shoulders right now. Trying to look after my wife and keeping her comfortable, whilst also trying to determine when to involve other people. Trying to keep our small family going, which is the third of my worries. I try to make the lives of my children as normal as possible, and help them live a good life, which does mean me being the one to do things with them most of the time. My wife was able to do so a bit over the summer, but with her bodily deterioration she cannot do much now, not without getting some strength back.
Sometimes there is so much hanging on me, that I become unable to act, and physcially and mentally stop. Faced with an overwhelming list to do, I wont do any of it, then feel guilty for not doing it when the paralysis ends, heading further down a depression cycle. I will get angry and frustrated with myself, and nervous about what I havent done. My stomach will become a ball of nervous energy, making me feel sick, and before you know it, I fall to inactivity again. Headaches hang around longer than previously, and I am constantly tired, despite however much sleep I may get.
I am becoming less able to enjoy things now. My attention span has been shot to pieces (probably a symptom of smart phones anyway), but my previous joys of listening to music and reading novels are not being done. I cant think of which album to listen to, and cant focus for long on a book. I desperately need to exercise consistently, but lack the motivation to do so.
Losing these elements of who I am has really come into focus on our anniversary. The man I was 20 years ago has gone, probably to the same place as the wife I have lost. The man I am now is a husk of who that was, married to someone who will likely leave us soon as well. The married relationship has gone, and I cant ever see how it will be back. My wifes body has been ravaged and changed beyond recognition, and whilst we still love each other, physical attraction has gone.
I have said before that cancer doesnt just destroy the person who has it, but it has a blast zone, like the front row at a Seaworld show. Cancer has managed to have the above impact on me, it has changed my happy go lucky children, has changed other close relatives. We care for my wife, and see the pain she goes through, and the stress and worry caused by that disease eat us up inside as well.
I’m not sure where we are headed this week. Friday we are travelling to meet relatives, but as this rate my wife struggles to go 5 minutes in the car, let alone over 2 hours. Firstly though we need to get her to a specialist and fix her back and leg. Hopefully this will be straight forward. My mind though knows it could also be the start of a hospital stay.
As an aside, the first dance at our wedding 20 years ago, was done to the following song. Seems apt to end here.
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