Handhold, in HDU with respiratory failure and terrified

[Seafour]

Just that, is anyone awake?

I'm glad I came here because my default is always to think of others before myself ensuring that when I get my wings they will be great big fuckers so I was heading towards a thinking of maybe half a dozen people who would be out of pain for Christmas' but you lovely lot have got me thinking again.

I've also had a visit from one of my favourite GP's who has reminded me how much my lung volume has reduced in the last six months and told me that I need to get on with it or it will be too late.

I have to mention my GP practice, having sued one of the partners for clinical negligence separate from the NHS trust, it was suggested that I left and found another practice. I scheduled a meeting with the practice manager to discuss it. He obviously thought I was going to take up his recommendation of an alternative practice.

The conversation went:
Sea: I asked if I, dh or any of our dc had ever upset any of his staff, been rude, failed to attend an appointment or wasted a GP's time.
Him: No
Sea: do you think it would be more or less convenient for me to attend the surgery a short roll from my house or one that was a car ride away
Him: squirming uncomfortably it could be awkward if I needed to see a gp and Dr x was on duty.
Sea: really, why
Him: well you know because of your accident, the thing with your back
Sea: your referring to my clinical negligence claim
Him: no no not at all, it's just likely to make you feel uncomfortable isn't it, if that was the only gp available
Sea: no why would it make me feel uncomfortable, I've done nothing wrong, if Dr x feels uncomfortable about treating me, my dh or any of our seven children registered here then I would be most surprised because that would be totally unprofessional.

There followed an uncomfortable silence........a very long one

Him: we couldn't ever guarantee that you wouldn't see Dr x, you won't get any special treatment.
Sea: good I don't want special treatment just competent and safe treatment for myself and my family. I have no reason to believe that Dr x makes a habit of making mistakes and then trying to defend them with a pack of lies so I won't be going anywhere.

And I wheeled away with dignity.

But since then I have had a sterling service from them, they always come and do a home visit if I'm unwell and the two gp's that generally look after me have been fabulous since they discovered my paralysed diaphragm. The cynical bit of wonders if they're trying to mitigate the ten years where they (along with lots of others) failed to act on my symptoms.

I stayed because I have no reason to believe that any other practice would be different and my moral compass is set in a way that thinks it would be grossly unfair to burden another practice with a patient who is very expensive to administer due to someone else's incompetence.

@C4pinkwheels, long time! I'm off the boot camp threads now but remember an amazing summer 2017 when we got to know each other a little bit.

Stay strong, you are amazing. Sending love and hugs

Theviceofreason I feel honoured, I truly do. The being let down by friends thing is shit, I often find myself wondering what the dynamic is like for them as a group now because I just remember lots and lots of laughter because (and I'm not one to blow my own trumpet) I'm bloody funny in good company, I will be the one to say what everyone is thinking, I'm good at one liners and love making people smile.

Being let down by dsc was hard but they were in an impossible situation, they had lost me and then their own mother, I was the easy target. They were a voice box for their birth mother, I don't believe that we raised them to be so devoid of compassion that they wanted to see me and my family cut off from dh and time has proved that. In recent months in the run up to my surgery once again their mother has had a relapse but her now adult children are less easy to manipulate, the demand that they take it in turns to come home at weekends, the total control of their every breath when they are there has made them start to question the validity of her illness, the need for everything to be about her, all of the time.
I guess time, distance and observation from afar has all helped, I will do everything I possibly can for myself, hate being helped, am very undemanding and my problems are real, the equipment, drugs, emergency equipment can be seen and touched. The contrast is vague, changing symptoms that come and go, no specific diagnosis and a demanding, woe is me attitude and the need to control everything.
Besides which I love them all very much and have only ever wanted what's best for them.

As for our NHS, I do have good support now but it's been hard won and I have no real faith in the system as a whole just certain professionals within it. I'm always suspicious, always second check and sometimes to an unhealthy level, have to see every test result, X-ray and will want a full list of scrub nurses, theatre staff on the day. I insist on being part of every handover (all done at the end of the bed in HDU) just in case someone misses something and I die.

Yolo how lovely to see you here, I hope you're going to stick around for my surgery next week if it happens, I'm sure there will be some epic posts during recovery as I won't be able to do much else.

I'm off the bootcamp threads too - someone there had a problem with me so I gracefully rolled off into the sunset taking my gammeldags with me

Marievan I go to London so infrequently now that I just take the car, pay the extortionate parking charges because it's a treat and that's what my PIP is for.

I'm sorry you find yourself isolated at home, it's crap and a growing problem in society, do you have any hobbies or groups you could go to?
Glad you have cats for company and a for getting around.

@Borntobeamum I wanted to respond to your offer of rl friendship, you do live within striking distance of me, it was a really kind thing to say, thank you.

maybe one day when my surgery is over and I've recovered we will have a huge Seafour picnic and we can all meet up - that would be strange.

That would be grand!! X

I insist on being part of every handover (all done at the end of the bed in HDU) just in case someone misses something and I die.

I don't blame you, I never cease to be amazed at the ability of some HCP's to miss/ignore/forget vital information.

I'd go for Option B, sometimes you do have to prioritise yourself. Stay strong Sea

Still following your story; still amazed by your strength!!

Sea I've read all of this thread with such rising emotions. Horror, anger, fear, rage, terror. I keep being pulled back to reality that this is your life I am reading about. Your actual emotions, as you suffered through them. You write so beautifully it is like a terrible, wonderful novel. Terrible in what you have suffered; how you have been treated and mistreated. Wonderful in your strength, your love for your DH and family, your beautiful writing. Your grit. You are a story teller. You were born that way. Your truth needs to be shared in a wider forum than this, although I am incredibly grateful to be here with you.

As to your friends. F Them All. Truly. Their loss. You sound like just the person I would want to be friends with. I wish I was within striking distance of you. I'd love the opportunity to get to know you IRL. I shall content myself with being your friend here.

Sofarsogreat thank you, I have never been one for telling my story, I'm a modest person and one of life's givers. I found it hard to stand up for myself always, I would shout and complain about others not getting their medication on time but not stick up for myself. I guess that changed last year, the possibility for the medical profession to cock up so monumentally shocked even me.

This thread is giving me so much confidence, until talking about it here I didn't realise how much hurt, shame and guilt I was carrying around still from those lost friendships. Just hearing that there are rl people who would want to know me is very healing. Thank you

seafour argh sounds awful, I've been touched up on a bus before but I just got off st the next stop. I wish I was as brave as you to confront him.

Please feel free to live LONDON through me. Over the years I've moved further out - now zone 4 but work central.

I'm so sorry to hear of what your poor dd had to go through. I'm hoping she is still finding passion in her music.

I've just caught up on your writing, actually I'm stuck for words !
It always amazes me that people can go through so much and can be as kind and compassionate as you seem.

You really should write you definitely have a talent for it. I have been glued to your posts.

I hope your better for your surgery and wanted to say just keep on being you. You come across as a wonderful person people would want to know. Your old friends for want of a better phrase really don't know what they are missing your an inspiration.

Rach there was no confrontation really, just the swinging nut whack. Like I said in my previous post I always found it difficult to stick up for myself but in the split second between him getting off and me heaving a sigh of relief I realised he was going to get on another tube and do it to someone else, so I had no choice I had to stop him. I just pushed past him as he entered the opposite platform turned round and swung my 1990's iconic hard shell briefcase up between his legs. I'm proud to say he went down hard, under his long grubby anorak he was wearing joggers with the front and crotch cut out. I think I hurt him rather a lot.

More than happy to live London through you, I spent my early years in near one of the most beautiful parks in London, miss the parks more than the tube. Me and one of my brothers used to buy "red bus rover" tickets in the school holidays and have lots of adventures. This was primary school age because our parents thought that was ok.

Peanut thank you for the kind words, I would love to know what my old teachers would think to see words like yours. The day I was expelled for being pregnant (it was a long time ago) the deputy head told me I would be a nothing, a nobody and I was condemning my child to a life of misery, poverty and pain.

Well we kind of did ok, I was lucky I was given a council house when I was sixteen on a sink estate and it was the biggest motivator ever. There was no way my dc was going to grow up there surrounded by people with no ambition or motivation to better themselves. I just wanted out and with the naivety of youth all I had to do was work hard, save money and escape.

So are you all coming on this journey with me, Through surgery, out the other side and fighting my way back to fitness?

Be warned, there will be bodily fluids, tears, tantrums, lows and hospital food but there will be highs too, lots of firsts and a trip to The most beautiful place on planet Earth.

I hope you like to have company seafour, you're going have plenty of it on this journey!

I think there is more people than you know on this journey with you.

P.s I'm a teacher, I taught pregnant teenagers for a while 15 years ago. They are some of the best parents and people I've ever.

Let that be a lesson to anyone whoever tells anyone else they won't be anything.

Be warned, there will be bodily fluids, tears, tantrums, lows and hospital food but there will be highs too, lots of firsts and a trip to The most beautiful place on planet Earth.

I'm in, I've dealt with the bodily fluids, tears, tantrums, lows and hospital food all before and come out the other side, and I can't wait to see you come out the other side too. By the time you're out of hospital you'll be begging to get rid of me

Hospital food? Well I'm out!

Just kidding, here for the ride and the stories.

sea I’ve just read your entire thread & I’m in total awe of you. I just had to say how amazing you are about your GP surgery. My DH was diagnosed with advanced cancer earlier this year & we have discovered that 3 years ago some test results were reported to him as normal were very far from that & that cancer was already taking hold. We are suing the G.P independently of the practice & I really don’t want to leave the practise.
We are all devestated at the error & my children will lose their Dad decades earlier than they should have. DH’S cancer is one of the most curable when caught early.
One of my sons has disabilities & a rare chromosome abnormality & it’s taken 10 years to get his condition understood by the GP’s. Reading your post has given me the courage that should the ask I’ll defend our right to their care. So huge thank you for that.

Gosh that was very me, me, me. Sorry! I meant it though, you are amazing & I wish you the very best for your upcoming surgery.

I’m in for the journey.

I actually quite like hospital food. When DD was in and waiting for her surgery (to remove a very unwelcome tumour who arrived uninvited) I volunteered to eat the mash potatoes!

Diangled I am so so sorry to read your story. I hope you have a shit how legal team, please tell me you have absolute confidence in them.
If there is anything I can do to support you in having the conversation with your surgery please let me know.
Drop me a pm anytime.

Sandunes where is this hospital with the edible mashed potatoes, because there certainly isn't any where I'm going.

Welcome aboard my bus