Total PE and possible tummy tuck at the same time

No, I’ve never had any investigations at all and things have deteriorated over the years starting with sciatica while I was still working. I can get my physio guy back if I feel I need to but I need to be doing the exercises he’s already given me which do help.

I only got him because I’d had the stroke, though my stroke had no impact at all on my mobility so I felt a bit guilty about getting the service at all! 

Sarah xx

I’ve always been fine with the contrast for either, but I had a couple of really bad mri experiences which developed into ptsd about any kind of scan. It’s awful, and I understand my fear is irrational but even with counselling, I can’t get seem to get past it.

Those I had in the last two years took a huge amount of effort, shaking, and crying uncontrollably. And an eternity before being able to even get in the scanner room. I do anything to avoid them!

Sarah xx

You mustn’t feel guilty Sarah you have been through so so much before and after the surgery.Even if you don’t think the stroke affected your mobility a stroke is a horrible thing to go through whichever  way it presents itself.Mum used to say that she was sure she was getting deafer each time she had one and it certainly seemed that way.Her mini ones mainly affected her speech but her arm and leg were noticeably weaker after a larger stroke.It was only after I mentioned to her neurologist that mum was still talking rubbish a month after a supposed  mini stroke that he put up the scans to compare.He was furious with the hospital as mum had had a major stroke which was quite obvious as a large black area on the scan.I said to mum all along it wasn’t a mini stroke and she knew it too.x

How awful for you,I hope the staff were understanding.

Oh, your poor mum Jane, how awful for you both. A stroke is really scary and the talking rubbish was something I found really frightening because I was scared I’d never be able to communicate properly again. We are lucky to have an award winning stroke unit at hospital pretty close to us which was excellent and did give me a lot of help. It seems like your mum wasn’t followed up properly and that would have made me really angry in your position. It just takes a short scan to use as a comparison. I’m so sorry you had that to go through along with everything else.

Sarah xx

They were FANTASTIC with me Jane-so kind.

Sarah xx

I'm with Jane, Sarah  please don't feel guilty at all. I do hope you can get some help though, mobility is so important and pain is, as you said, very draining. You deserve all the help you can get. From wherever you can get it.

Like Jane's mother I have a very handy daughter who fights my corner for and with me. But I have also learnt to be tougher than I used to be, especially as I've got older. Just because we're old we don't deserve to be fobbed off with less than useful treatment. And younger medics can think that way sometimes. I always ask them what they would want to do if I was their mother. That usually makes them think!

Thank you Latestart -what a kind post! I used to do what I was told, I never questioned any doctors, but all that changed when I had my stroke and had a complete meltdown in the hospital on the ward. I think it was the fact that the stroke gave me such a scare, I’d felt very bitter about the lack of care and support I had after my surgery and I just exploded!

it certainly got me action! I got incredible support from then on, from speech therapists, occ health therapists and probably most importantly counselling. That stroke changed everything for me, and in a good way. I wish I had been able to have that support after my surgery.

Now I speak up for myself, I ask questions, I have refused to even see my gp again because they made a serious error in diagnosing me with something life threatening and I feel better for taking back control.

I have a new gp now, also useless, but met a locum at the surgery for a review appointment recently who had worked under my urology consultant and finally there was someone who understood what exenteration surgery involved! He spent 45 minutes with me going through my recent blood tests, updated my incorrect nhs records which didn’t mention any of my surgeries and he listened. So I shall ask for him again if I need to visit the surgery. 

I‘m only 62, not on the scrap heap by any means, but I am so much better now about asking for help that I need, and I have been very grateful for the compassion and care I’ve received. At last!

I have become firm, assertive even, but never rude. I just refuse to put up with any substandard treatment which I’ve been unfortunate enough to experience in the past. I correct nurses who tell me I haven’t had my bladder removed, refuse rectal antibiotics when they don’t believe my rectum has been removed, and I’ve refused IV antibiotics when I’ve had dreadfully placed cannulas which left me with blood running down my hand. I simply say can you please find a doctor who can re do this correctly. 

It’s like the stroke switched on something in my brain after I was able to talk sense again. 

Sarah xx