We have had a busy few days. My son won the league with his football team, so had a medal ceremony on Saturday. He was very proud as you would expect, especially heartening as he had been considering giving up the sport. Lots of photos with the trophy and his squad.
Then my daughter is starting her exams. AS levels, so between GCSE exams and A Levels. She is diligent and hard working, so I expect she will do well, but she has great expectations of herself, so our lives can be a little stressed. We have had some nice walks in the woods as a break through, and have also been helping her practice her driving. With a test in a few weeks, that is something else she is keen to master.
Of these activities, my wife was only able to come along to the medal ceremony. Even then she was struggling for breath and energy. I worry that things are progressing faster than we thought after the last scan, as the slightest exertion will send her back to the sofa. She will say that she has done quite a bit, but then it will transpire she means she has mopped the kitchen floor. Expectations of what she can achieve have really shrunken.
She wouldnt make the walk in the woods, and has said herself that she would slow us down. An activity that only last year she would have been alright with has now gone. Additionally she wouldnt sit in the car with us for a drive as that will hurt her stomach too much. We blame it on the after effect of food poisoning, but there is only so long we can bury our head in the sand on that one.
Food is still an issue, more so than ever. She will try a little at tea, but will resort to eating yoghurt and protein bars to get something inside her. I am reminded of when she started chemo, and was trying to take protein drinks then to build up her strength. The attempt now seems like a losing race, as the weight loss out paces the protein addition. She does have some good friends take her out places, and we will feel the effects afterwards of her almost comatose with lack of energy.
And I realise that I don’t want to be with her in this state. A horrible thing to think. The constant reminder and mental comparison with how she used to be is getting too great. I find myself hating being a carer (as I have mentioned before here https://mywifehascancer.blog/archives/496). I hate not having a partner on level terms. But I am struggling with the half finished jobs around the house when I get home, and the broken items around the kitchen that I need to fix. The role of a carer is one that is not often talked about, and even then only in terms of the support to the patient on a daily basis. We never mention that there are many things that need to be done because the patient cant complete them as they need to keep their dignity but lack the strength to do so.
And as partner, seeing your loved one totally changed is devestating. The weight loss, the change in her body. The wheezing as she struggles for air, or when food is stuck in her throat. I am reminded sadly of the last months and years of my grandfather when he was in a home. He had parkinsons and eventually was unable to look after himself safely. The weakness in his body, the weight loss, the struggling for basic life was heartbreaking, and I feel I am now reliving all of those emotions now.
We sleep in seperate rooms now, my wife in our marital bed, hopefully comfortable (apart from the cat on her feet), me in the spare bedroom on a single bed surrounded by clothes drying. This isnt how we saw our late forties going at all. We imagined our children growing up in a happy home, with loving parents, trips out as a family, maybe the odd date night as they were old enough to look after themselves.
Cancer causes the bodies cells to fight against themselves, mutate and destroy the neighbouring cells. The disease is relentless, unless caught and treated. That is the basic medical side of it.
However there is also the non medical effect. Cancer as a disease starts with the patient, but destroys the neighbouring family members, rippling out from the start, and infecting every aspect of their lives. It breaks up happy marriages, causes mental illness in children, and is relentless. I think the effects will be seen long after my wife is gone, in me and my children trying to live with thoughts of what we have been through. I guess a form of PTSD potentially.
It is that destruction that I dont want to be reminded of. I dont want to witness the changes cancer has brought, or the pain it is still causing. My mental health has had its fill of all of this, and is struggling to cope with it now. Maybe there is an aspect of dehumanising my wife as well, seeing her a patient rather than as a woman with feelings. It isnt intentional, but a form of coping mechansim, a way to get through another day.
Coping is the only way these days. There seems to be little chance of things getting better right now. We are on a downward trajectory, a glass slope with slippers on, and feel in free fall. Where and when we will land we don’t know.
A bit of further reading has told me that what I am experiencing is another stage of anticipatory grief. Something else I have written about before – https://mywifehascancer.blog/archives/387. Back to discuss the old mental health, and the stress and concern we are living under.
This type of grief comes round in waves, and personally effects my well being by almost paralysing me. I know what I need to do, and when I am in my safe space of the car I can plan out what I need to do, but when I sit at my desk, or start a task, I cannot complete it. The ability to have confidence in myself has gone. Not great when I work for a very competitive company, and need to keep a job to try and pay the bills.
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