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Here's my story. We met and were married before people could believe, and we had the most amazing perfect existence together. Like everyone we had lots of ups and downs, but our foundations were so strong, the downs were small and short lived.
A few years back we found out she had a gene defect and needed preventative surgery (a radical hysterectomy). It was done via keyhole and her recovery was quick. And then things became even better… astonishingly so. We were like newly-weds. Utterly in love and devoted to each other.
Then a few months after there was a swift and dramatic change. I describe it to people that it was as if part of her had been switched off. Her personality became cold, as if her heart had turned to ice. They changed her HRT but nothing made any difference.
We coped best we could but there was clearly a huge problem. One night I searched “my wife is a robot” on Google because this is what I felt she’d become. I discovered something called Alexithymia which is a condition where you lose your emotions and empathy, or have trouble identifying with them. I managed to convince my wife to take an online test (I did it too) and she scored so poorly it was a shock to both of us. I felt we were making some progress as now we had something to focus on.
And then cancer struck and threw us down a different path. She had a huge 11 hour life changing operation and she survived which is obviously fantastic news. Her mood didn’t really change so much this time, but physically it was devastating for her.
And so we continue. Even worse than before.
To make matters worse, her public side is unchanged. We go out and we’re still the comedy double act, everyone still thinks we are the love birds we used to be. However put her in front of a doctor and within 20 seconds she’s in floods of tears. I’ve tried so many times to talk but she can’t do it, she can’t express how she feels. Her moods have become wildly simplistic, she’s angry, she’s calm or she’s euphoric – there is nothing inbetween. The complex and vibrant woman she used to be has gone. It feels like she’s been abducted by aliens and they’ve replaced her with a carbon copy, which is almost right, but not quite.
I know that this is her time and she is the main focus. She's been through an utter hell and my job is to care and protect her and I absolutely get that, but I spend every minute of everyday thinking ‘who the hell are you?’. It’s starting to affect my mental health. My voice never gets heard and nobody ever asks if I’m ok. I just slip from day to day in a lonely no man’s land wondering who stole my wife. Thanks for listening.
I do so wish I had a magic wand.
Carers are often forgotten, and as you say, their voices are not heard.
What I want to do is wrap you in the huge healing hug and hope things get better for both of you.
Much love and healing
Oh thank you so much for your beautiful kind words. You put tears in my eyes. Love and Peace x x x
I'm sorry to hear of your situation. I think that you and your wife would get a lot of support from these forums. I certainly recognise some of how you describe your wife in me.
There is a carers group on this forum and you would probably find it beneficial to join that group where you can communicate with other carers who will likely share similar experiences to yours and will be able to offer advice and support.
If you have a local Maggie's Centre they are also a great free support service for anyone going through cancer and their loved ones.
Hi ConfusedJedi, welcome to the community tho I'm sure you don't want to be here.
I'm so sorry to hear of the changes to your wife's personality. If you don't have a Maggie's centre nearby then do ring the helpline on 0808 808 0000, 8am to 8pm 7:days a week to ask about Macmillan centres.
Do u mind saying what cancer your wife has?
It might b an idea to join the relevant group ( see under Cancer types) and also the Carers only group ( see cancer experiences)
Sure thing, she was initially diagnosed with Lynch Syndrome (which triggered the preventative hysterectomy) and the it was followed by bowel cancel (another operation leaving her with an illeostomy). She's had a really tough time. I on the other had have ridicuously good health (touch wood)... and she's alive and well. So I should be happy as larry, but I'm not. I feel like I'm just moaning.
I will certainly go check out the other groups. Thanks for your response.
Not only is there a bowel cancer group ConfusedJedi but also one for those with an ileostomy -
Btw ConfusedJedi, feel free to have a good moan. That's one of the reasons we're here - it's part of supporting each other.
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