In my last blog (25/3/12) I was optimistic because my wife’s blood results appeared good. I was wrong, oh so wrong. The cancer is progressing. My wife’s liver has blown up like a balloon, she is in serious pain, and as a result spaced out on painkillers. At the last consultation, her Oncologist talked about stopping the chemo when this current schedule finishes. We have now been put in touch with Palliative Care. My wife is a real fighter—if sheer will power could beat cancer the disease wouldn’t stand a chance—and she bristled at the suggestion that treatment stop. And when the oncologist asked if she wanted to know what her prognosis was my wife said she would prefer not to know, what is the point. She is right—how can knowing help a cancer suffer—but I need to know. I phoned the oncologist later that day. The news was not good. I asked if it was weeks or months. I was told it was a bit of both but the doctor would be astonished if my wife was still alive in 6 months. It was awful to go behind my wife’s back like this but I am going to have to take time off work to care for her and I need to plan. Last week was bad. The hospital arranged for us to be contacted by the Palliative Care Service. When my wife heard they were coming round to the house she was furious, furious with me. Boy did I cop it: I had gone behind her back, no way was she going into a Hospice etc. As it turned out the Palliative care doctor was brilliant. She charmed my wife, calmed her down and even got her to open up about her gravest fears. She is not worried about herself of course, she is most concerned about the children and particularly my son who suffers from depression. We are going to have a family meeting in a few weeks time and talk things through. Hopefully it will relieve my wife’s anxieties. What worries me most at the moment is my wife’s vagueness and confusion. For someone who was/is bright and highly intelligent it is really difficult to see her like this. The doctors assure me it is the painkillers causing it at the moment but I know that when her liver starts the fail it will affect her brain function. It is hard to deal with her in this state of confusion and forgetfulness. She insists on cooking meals and then forgets what she is doing half way through. A leg of lamb was partially ruined on Sunday because she turned off the oven thinking it was the grill! And this evening when I got home from work she asked me to put a crab quiche she had made in the oven. The problem was she had not actually put anything into the pastry shell she had baked. It would be less stressful if I did all the cooking myself but she doesn’t see it that way. And then there is keeping check of the medical appointments and visits by the community nurses etc. She has a book to write things down in but is constantly misplacing the book and then getting anxious about that.
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Contributor
My heart goes out to you and your family John K, My wife was a GP all her working life and to see her bright intelligent mind slowly deteriorate due the disease, painkillers and chemo was worse than living in a nightmare. In August of 2010 her CEA dropped to 8 from 1900, I cried with joy. Then a some months later the chemo stopped working and was discontinued, her liver was swollen. To see this happen to a dear loved one there are no words than can adequately describe how we feel. In the last weeks, my lovely wife of 40yrs started a conversation with the words, I know we dont love each other anymore. Is there no heartbreak this disease will not take us to. wombat4
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Thank you for your kind words Wombat4. I could not agree more: there is no heartbreak this cruel, cruel disease will not take us to. One of the great myths is that facing terminal diseases somehow brings people closer together. My experience is that it doesn’t. The tension it causes is too great and subtly drives a wedge between the sufferer and the carer. I have had my wife say some cruel things to me. I know it is her anxieties and pain causing it (and she cannot take it out on the children, or the cat or the dog), but it still hurts. And the truth is at some deep level I resent it. After all I am not to blame and seeing someone I love so deeply occasionally turn on me like this cuts deeply.
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New Contributor
God Bless your family and you John K,I lost my dearest dearest friend to breast cancer that went to liver cancer and it was one of the hardest things I have ever been a part of and I was one step removed.I was not her primary carer although I did I hope play an important part in her battle with this insidious disease.My friend didn't show anger or any real emotion towards anyone not even her husband and this was also difficult,it is very hard to know what to do or say and there were times when we all just wished that she would lash out or yell or even blame someone however this never happened and that also hurt.My dear friends adult daughter[21] actually spent the evening with us after the funeral and confided in us that because of no reaction from her mum she thought she may have died angry at her.I guess what I am trying to say is that I'm not sure if there is anyway that we cope better with.You have every right to feel the way you do and the hurt cuts deeper than anything we can ever imagine feeling.Stay strong and don't let this insidious disease take anymore than it already has.My mum always told me we lash out and hurt the people we love the most because we know they will bounce back and still be there. You are in my thoughts and prayers X
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Thanks Tina. It is good to hear from others who have been through this. What you say is probably true, we hurt those we love the most. I will hold on to that.
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Occasional Contributor
I relate to what you are going through with your wife,it sounds like you are describing my husband of 43 years.His chemo did not work and he has been arguing with his oncologist and can get very nasty with me when he gets confused.It sure does hurt but I know it's the dreaded disease and the medication that's doing this to him.He is coming off steroids He watches the time every minute or so and has started to do this during the night and forgets he has eaten.He shuffles from his arm chair to the computer where he has a game set up and that's it,he never finishes it.He is also a paper shuffler trying to get it in order but then forgets. He is so wobbly on his feet and refuses a walker if I reach out for him he gets upset and accuses me of fussing so I hope the palliative care team can convince him to have one,he agreed to see the team next wednesday.I don't want him to fall and break a bone. Like your wife,my husband has a fine intelligent and quick mind,it breaks my heart when he is unable to remember what happened a few minutes ago.His short term memory is terrible. It takes him hours to finish a cup of coffee because he thinks he has already drank it and then demands to have another one every 10 minutes.I heat what he has left in his cup in the microwave and he feels he is getting a fresh cup (the coffee is only approx 10 minutes old)but I do this for my own sanity. I will be so thankful to get some respite from professionals as I only worry my 'guts' out when I leave him with friends. I am glad your wife appreciated the palliative care team. My heart goes out to you. Gently gently. Dotty
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Thanks for sharing with me Dotty (and Wombat4 and Tina as well). It just doesn't stop does it and I have already been warned it will get worse and worse.
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