Bitty Barby Boob RIP part 2
By jeand
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Bitty Barby Boob RIP part 2
Wednesday morning started early for me. I was awakened at 2 a.m. by the in charge doctor coming to see with the results from the scans. The body scan showed massive hematoma, but the surprise was that the brain scan showed a lesion on the brain - in the cerebellum. That is the area mostly concerned with balance. The doctor tripped over herself to make me think that it doesn’t have to be cancer - there are loads of alternative things, but she sent the scan over to the Neurology centre at another hospital for them to comment on. When their comments came back, it was decided I was to have an MRI brain scan with contrasts, asap. She had thought the lesion might have shown calcium deposits.
I was on a ward just for people who have been in A and E and need to be found another bed. But as the day wore on, it was clear that the surgery promised that morning was not going to happen. I got a piece of toast about 4.
The real problem was that this hospital did not want to antagonise the one who had done my surgery - and the breast care specialists were very keen for me to go there so they could find out the problem and sort it out. So they agreed that I could be moved to that hospital as soon as a bed was found and not have any more treatment at this one.
Just to fill in with a bit of local colour - I was in a 4 bed ward. The closest to the door was a woman called Daphne - not old - maybe in her 50’s but no doubt badly suffering from early onset alzheimers. She didn’t know who she was, or where she was, or what was expected of her. So she reacted whenever anyone wanted to do temperature in the ear, BP or blood test, with screaming bloody murder. The nurses were wonderful with her - so patient and caring. I would have not been able to do that. And going without sleep, the rest of us in the ward, so wanted to give her a sleeping tablet . At night, her ravings took the form of nightmares. She had obviously been raped by someone she was familiar with, and she went through the whole conversation - I don’t want to- please don’t make me - I don’t want to do it like that either - NO NO NO and then screams to wake the dead. She went through that almost word for word every night I was on that ward.
On Thursday no hospital beds available at the other hospital again, but it didn’t matter too much because I got the chance to get my MRI brain scan done. If you have never had one, you cannot imagine the noise the machine makes. I found a way of coping with it by replaying in my head the music from Jesus Christ Superstar - the bangs and blares sounded very crucifixion like. The music is wonderful, and so I felt like I was turning a difficult experience into a meditation. Although I don’t suppose many people meditate accompanied by heavy rock music.
Again it was a very late doctor who brought me the results. Not calcium, and about the size of a little finger nail - only one area. They had done a similar test last year and when they checked it, there was nothing there at the time. Because I have had two episodes of cancer so far, they felt that it had to be a reasonable suggestion that it might be a metastasize, and they were going to discuss it at their next group meeting to decide what to do next.
It doesn’t make very good reading on the internet, although if this is cancer it is being caught very early which should help. All medalioblastomas are labelled as 3 or 4, which means they are aggressive, and even with the best of treatment, the prognosis is not good. But I am getting ahead of myself. But do you know there is a 78 week waiting list for being seen at this Neurology hospital? I have to hope I am one of the lucky ones that gets through.
Friday things were no farther ahead with trying to get me a bed in the original hospital. The nurse explained to me that bed distribution was in the gift of people who had that as their only job - and because doctors would contact them directly when they wanted to admit a patient, there was hardly ever a spare bed for anybody who wasn’t already in the system. You might think having had been operated on there a few days before might have made me still part of the system, but no, my record was not active. And they really didn’t want me to go. They kept saying that they hadn’t been told it was an emergency and that things had changed after I left their care that had nothing to do with them.
My daughter is a very strong woman. She makes a lot of enemies, especially in the medical world when she is fighting for her family - but she decided she was going to report that hospital for breach of duty. I had been on the waiting this for the next available bed 48 hours before. The doctor gave her all the numbers to ring and encouraged here, and a few hours later, I was told a bed had been found.
An ambulance run by the 111 service arrived at 8 and I was left for my new ward by 9. As I was introduced to my new roomates, a felt a slight fear that not everything was going to be smooth sailing here either.
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That must have been tough
That must have been tough listening to Daphne's ravings. It sounds like she has been through such a lot. 78 week waiting list for neurology?! That's horrendous but probably where the NHS is as a whole. Good on your daughter for being so determined and fighting for her family. As always, a graphic but engrossing write up.
Wishing you a happy Easter so enjoy as best you can, our Jean.
Take care. Paul x
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Thank goodness for your
Thank goodness for your daughter and her strength in not feeling afraid to speak up. It's so scary to think that there's to be a waiting list of 78 weeks to be seen at the Neurology hospital.
The NHS seem to be under so much pressure, makes you realize that being able to get private treatment is a life saver for those that can afford it.
I really hope you manage to spend Easter with loved ones and just for a while escape all the concerns.
But if not keep writing Jean, it will not only help you, but others going through a similar experience too.
Jenny.
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Hi Jean
Hi Jean
You explain things so well with not a hint of self pity. You are certainly going through the mill but as you say the lesion on the brain was found early so hopefully it can be dealt with quickly. Your poor treatment at the hospital might make them work a bit more quickly this time. I know the NHS are up against it, but!!!
I had an MRI scan last year and as you say very noisy. When I came out I told the operative that it sounded like a piece of Stockhausen music. He looked at me as though I was mad (as Stockhausen probably was)
Please keep up the writing, and hopeful thoughts.
Lindyx
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Please pass the cherry above
Please pass the cherry above onto your daughter - she deserves it! It's not easy speaking up in a hospital, and it doesn't always bring results as I know from bitter experience but I'm pleased she was successful. I hope you don't mind me saying shitshow, but it's honestly the only word for what you're describing - an absolute shitshow! I hope things have improved for you since then Jean
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What a mess. Such lack of
What a mess. Such lack of communication and muddle. Our confidence cannot be in human systems. I hope it is all over now, but I suppose we will know more when you write some more. love and prayers, Rhiannon
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As others have said, hooray
As others have said, hooray for your daughter. I had a number of run-ins with hospitals about my parents' care, and I always wondered how those without assertive family members managed.
Poor Daphne, but it's so awful having to listen to something like that all night.
Fingers crossed for you, Jean, as always. Keep these wonderful updates coming.
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there's so much good here,
there's so much good here, but it's being swamped by the terrible.
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Thank goodness for your
Thank goodness for your brilliant daughter! She must have your tenacity of spirit to defend you the way she does in the face of such fierce incompetence. And to catch covid on the top of everything else! You are so STRONG to keep brave and writing all through. What an amazing woman you are
Hope you are over the covid by now, thinking of you
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Such wonderful writing... It
Such wonderful writing... It's such a tough struggle and this writing is a great outlet for yourself and for those of us reading it.
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