How are we all doing ?

Thanks Teasswill,When I finally got to bed last night I was reading some of the information on both of the sites you mentioned.I have had experience looking after patients with very late onset dementia.Mum knows who I am and is able to converse.My main problem is that she has lost the concept of time.She thinks I have been out of the room for hours instead of 5 minutes and starts getting agitated and calling or coming out to look for me.Yesterday I was talking to my sister on the doorstep at a distance and I said mum will wheel herself out any minute and sure enough she appeared in a state,she did wave to Sarah.I don’t think the lockdown is helping the situation,Mum doesn’t understand all the rules.She has always been very on the ball with the news and politics but has lost interest and cannot follow tv easily.Love Jane xx

Hi H,Your dad’s story reminded me of the first time Sarah & I went to see mum 3 days after her brain haemorrhage.We think she must have been a bit high on all the medication as she decided to answer all the nurses questions in French.She eventually recalled the prime minister in English after they told her off.She would have given the same response to the Margaret Thatcher question.Mum has also had one major stroke and a number of tia’s.Love Jane xxx

Similar vein, when my Mum-in-law was taken in after a fall, each new member of staff she encountered asked her name etc, as they do, to check it's the right patient. She got really wound up by this, thinking they were testing her sanity & didn't believe who she was.

Mum seems brighter today and is tucking into scrambled egg on toast.It’s so good to see her eating again.I weighed her yesterday and she is 8st 13lb the same as me.I think she has lost at least a stone and a half.Just having a quick sandwich before I change mum’s pain patch.I’m definitely back to work but coping so far.Love to all.Jane xx

Same with my dad, he couldn't remember anything but he remembered Thatcher 

You know I do believe that some medical people will lie about progress of a patient if there's a lack of funding ....  This means that they don't have to do anything, & they're covering themselves at the same time.  

W, hope you get more support soon, it's certainly a struggle for you both here.  My mom had her moments, but she was so full of joy with it all & she was in hospital.

Take care all xxx

Hi all, just checking in. Had my TURBT on Monday - dear god I forgot just how painful they are afterwards! Kind of mixed news filled with a bit of hope and a bit of dread.

The hope: The doctor that did it says he didn't get it all out, as he felt it wasn't needed, as 'it didn't look like any cancers he had seen' and he suspects that despite the period of time since my radiotherapy, it's 'just' radiation cystitis. He took a biopsy anyway, so the waiting game.

But of course, me not doing things easy...

The dread: My innards have not reacted too well with the radiotherapy. My bladder has shrunk - like, really shrunk - and it probably hasn't stopped shrinking yet either - and Urology are going to monitor it as it's, in my doctor's words - 'getting to the stage where it's going to render it pointless' 

It's capacity is around 250ml, or to put in to context, the amount of an average coffee cup. Normal size is between 450-550ml...

'So, you don't have cancer Sir, but you're going to have to have your bladder removed anyway...'

At least I now know why I'm weeing so blooming much. 

Hi Nick. Bit of mixed news as you say. Sounds promising in the short term, but uncertainty moving on. Lets hope you get good results from your biopsy and see where that takes you. Best wishes.

Hi Nick sounds like a lot to take in. Hope the biopsy confirms the all clear. Is there any way to stretch the bladder again? Best wishes x

Dropping by - feeling crap. My Mum died Mon eve - had some sort of turn Sat night & was on the bedroom floor until we found her Mon pm. Some of you will understand the complications that ensue from that 'long lie'. We persuaded her to go to hosp & medics kept me well informed during the eve but she deteriorated rapidly & it was obvious she wouldn't survive. They did invite me to go in then, but I decided not. Sleepless night, then phone call next morning confirmed I would have been too late anyway. At least fairly quick & she stayed independent - would have hated to be in a home or need carers.

Now on the awful trail of documents, notifications etc. All at arm's length. Bugger.

Oh Teasswill. So sorry to hear your sad news. Mum will be at peace now. Thinking of you and your family at this time. Best wishes.