Today is a bad day. For me to admit that, it must be bad. I am usually a phenomenally positive person but today I really want to throw the towel in, run away and pretend that none of this is happening…….
My journey starts 24 years ago when my other half was diagnosed with a tumour behind his right eye. Surgery, radiotherapy daily for six weeks and life moved back to normal, bar the loss of sight in the right eye.
Fast forward 15 years: now married with two kids and the little bast–d returns. Another bout of surgery and life returns to nearly normal.
Fast forward 3 years and Ian’s false eye starts dropping out at unexpected times so we are referred back to a prosthetic clinic where a new eye is made and fitted. According to medical records, this is where it all goes very wrong… unbeknown to us the prosthetic technician reports an ‘unusual mass behind the orbit of the right eye. Is this a recurrence of the tumour or scar tissue?’. The surgeon noted this (according to the file) but never actioned an MRI or CT scan. At this point, it would have been simple day surgery.
Fast forward again to October 2017, when the false eye starts falling out again and Ian keeps getting nose bleeds. We head back to his specialist only to find that the tumour now occupies one third of his skull, has dissolved the bone structure at the back of the eye sockets and taken the sinuses with it too.
We are told the tumour is inoperable, are referred to our local hospital, where the decision is taken to give him radiotherapy to stop the tumour growing. Before they commence radiotherapy, whilst confused at 3am, he falls down the stairs and has a brain hemorrhage. We pull him through that (have been given 12 hours to live), radiotherapy commences and then in May 2018 another local hospital “misses” Pleurisy, pneumonia and pulmonary embolisms when we take him to A&E with chest pains.
Then at last we get a break and we get the news that the tumour has shrunk to the size of a pea!
November 2019 arrives and he has now lost 40% of his muscle mass following 6 months on steroids in 2018. On the 8th November we are in A&E booking in for a CT scan when Ian has a stroke. It takes my 17 year old daughter and I less than 30 seconds to raise the alert. It takes Stoke Mandeville Hospital 19 days to confirm it ywhich time he has had three more! We have him moved to a stroke unit at High Wycombe Hospital where he is immobile for a total of seven weeks. We finally get him home on 23rd December.
Since getting him home, we have had a diagnosis of Cap Gras Para Amnesia which means that he confuses people, places, times and believes that we are all lying to him constantly. The house that we have lived in and owned for 24 years ‘isn’t actually ours: we are lying to him and spending unnecessary money building additional houses around ours to make it look like this is his house’. today he tells me he cannot move his feet purely because he wants me to move them for him!!! He refuses to drink water which means he dehydrates which makes the confusion even worse. I sold the family business before Christmas for virtually nothing on the proviso that the staff were protected and given continuity of service.
So I am now a full time carer (and really pushing the boat out on the whole £66 carers allowance!!). He is confused, paranoid, argumentative, constantly complaining that ‘this isn’t right, that isn’t right’, my back is in crippling pain because he refuses to sit up on his own. Last night he woke me up every half hour just because he “wanted to make sure he was awake” which leaves me a complete basket case today and barely able to function. We have a carer come in each morning to get him up and showered and he is as good as gold for them, but once they leave he reverts back to his aggressive, paranoid self.
I am absolutely at my wits end, trying to keep everything together…….
And all he has to do to keep everything on the level is to drink three blessed bottles of water a day, which he is steadfastly refusing to do………
I am so sorry that my first post here reads as a complete rant but if I don’t let it out, I don’t know how I am going to cope…
Hello and welcome!
Are you seeking counselling or not?
Hi Sandy, welcome to the forum.
Has anyone told you about NHS Continuing Healthcare?
I can’t see how you can possibly be expected to deal with all this with so little help and support.
Hi Sandy. That is very sad. This is a lot for one person to cope with.
Have you any family who could help you?
You have done remarkably well coping all this time but now you need outside help.
Please don’t try to carry on alone.