I have to add a few words about support here:
The MacMillan nurses have been absolutely stupendous in propping me up. Both teams at the Singleton and in Carmarthen have been exceptional in their care.
My brilliant daughter, Cat, has Skyped me from Berlin and sent me encouraging messages throughout. When I couldn’t face anybody she told me, haggard, hair in disarray and with a nasogastric tube snaking down my nose and taped to my spotty face, that I was beautiful.
My stepdaughters messaged me and the grandchildren made me laugh with their antics
My mother in law hugged me whenever we visited. This is quite amazing. She doesn’t hug anybody except maybe the great grand children who hurl themselves at her.
My darling darling husband, Stan, has ferried me all the way to Swansea for all my appointments and every day for radio . Some days when the wait has been long or occasionally when there has been a machine breakdown or when traffic was bad we have been away all day. He never complained.
He fed me, medicated me, propped me up and held me when I hurt, cried and wanted to give up frightened and bleeding.
His life has been turned upside down too. He is a strong and proud man and although his two daughters have undoubtedly been there for him, he has had little or no professional support. Why is that? Why isn’t anything offered for the carers? There is a Maggie’s centre at The Singleton but we never availed ourselves of any creature comforts there. It’s so far from home. Perhaps we should have explored what the GP and community team might have offered but we never did.
When I ask him how he’s felt through all this he simply says you have to accept the things in life you can’t change and just get on with it.
Today my coffee tastes like Christmas in Costa Rica 
Hi Sue. This is very true and it’s even worse now that the NHS is in even more disarray after Covid.
I think we just have to be more proactive and try to help ourselves.
It’s a pity because maybe a few hours arranged in hospital might not be that hard to do.
As you realise we are in completely uncharted territory floundering about trying to survive. Looking after a scared patient in pain who you love is heartbreaking enough. Finding space to keep your sanity is really important. Have a day away from caring. Go out with a friend.
I mentioned Maggie’s and that undoubtedly works for a lot of people.
I don’t think I mentioned the Swallows Head and Neck Cancer Charity. They have a particularly strong carer section and there are groups all over the country.
Macmillan has a carers only group too but I’ve not really looked in there.
There are carers posting in the HNC section and we do try to support them.
GP? I can’t say much. There seems to have been some sort of disassociation between clinician and patient there but heaven knows what the answer is. They don’t know much about oropharyngeal cancer either.
It’s tough.
When the wrap around hospital care finishes after treatment it’s even tougher.
How are you feeling in yourself, now and how is your husband?
Take care
Dani xx
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As a carer I am interested to see your comments on the lack of support for carers. I have felt quite isolated and alone during my husbands treatment, despite the wonderful support of my family. Also, it has felt like we have been in a hospital bubble, with no interaction with the gp at all, other than the occasional prescription request
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