Can I refuse to go to hospital anymore?

Dear 

I also have a DNR. No one can force you to go to hospital or have any treatment if you have capacity, I’m assuming you are thinking of a situation where you’re are not in control of the course of events and someone else calls an ambulance. If this is the case then it’s important that you make anyone relevant aware of your DNR and that it’s existence is visible in your house and you carry  a copy around with you, which I do when attending dialysis for instance. I know some people have a large note on their fridge door for instance so it’s seen by emergency services. Even if you are admitted to hospital there is no reason to believe you will be given cpr as a default position.

.https://compassionindying.org.uk/making-decisions-and-planning-your-care/planning-ahead/dnar-forms/

Hi Jack

 is correct in everything she says, with respect to refusing treatment, no one can force you to have treatment for anything. Given that your mum is still alive, she needs you now. I know that it's a bit of a journey to go to see her and I respect you immensely for going and I'm sure your mum is happy to see you. 

You wouldn't want to give up living and refuse treatment if you are in great pain and your organs are shutting down. I think I remember you said you were going to write a book, is that right? Then you mentioned that you were wishing to go to a handful of places and you were wanting to paint as well? Enough reasons to live, I'd say. Just think of the pleasure you could give to people either through writing or painting and the drawing you did of Carrie Fisher is delightful, such an exact likeness.

On your profile page, the first sentence is "Live the best you can"

I hope this message is food for thought, Jack.

Tvman xx

Dear Johnty and Tvman

im going to do all these things but I’m still traumatised by what happened to my mum in hospital. When they forced a Deprivation of liberties D.O.L on her. Plus the fact my suicide attempt nearly two years ago. I’m worried about one placed on me. Other than that I’m fine but I’m suffering a lot of head pain that is really incapacitating me, forcing me more to bed. Like most of you, I’m scared. Just got home. I’m also starting to feel sick more. Yes I’m going to do that book. I need to. But I’ve got to finish my Frida Kahlo crochet bag first as I want to use it in February when I go to V&A. I really would love to live in a narrow boat, so I don’t exactly belong in any one place, just go back to my family’s travelling ways. We were Carnival people. Still have some in the UK fairs and circus. I’m frightened of being an prisoner at some point.

Hi Jack

Glad to hear that you are not thinking of doing anything. We all have those fears of coming to the end. When I was neutropenic a few weeks ago I was thinking a lot, but at the same time I was telling myself that I shouldn't be thinking that way. 

Oh Jack, you have an interesting background. I have thought many times that I would like to live on a boat or at least cruise the rivers of Ireland and also lower and upper Loch Erne. I'd like to spend a couple of weeks on the Norfolk Broads just letting the world go by, doing a jigsaw, reading, stargazing. That's not going to happen with my wife though, not her scene at all. Doesn't like small boats, big ships are fine though. Maybe we will take a cruise this year, nothing very expensive though, we don't have a lot. 

I'll have to google Frida Kahlo crochet bag though, no idea about that. Keep your pecker up Jack and try not to worry. Ever thought of counselling? I had a few visits, it was good to see one for a few weeks.

Take care of yourself Jack

Tvman xx

Your wife isn’t daft. Those large cruise trips are luxurious and expensive. I prefer narrow boats and self catering. 

The Frida bag is my own design. I don’t think anyone has crochet one like mine before. I have her head, neck and shoulders, plus her braided and flowered hair. Just got to finish the hair and sew the lining on the inside of the bag. Then make the bag scrap. Of course I’m not going to do anything silly. Just scared of my liberty being taken. I wouldn’t mind a cruise. But I am interested in the northern lights and the ice hotel. But it costs nearly £4000 for three nights. New Zealand is another place. New Orleans. I can dream. Might go back to Wales in May for the day. I love Wales. Cannot understand why Anne Robinson has it in for the Welsh. They are lovely.

Hi Jack

Sorry I read your post this morning and wanted to answer but I managed to break the charger for my laptop and I hate writing a long message on my phone. All sorted now.

I can relate to how you are feeling in so many ways. I also have a DNR in place. Before Christmas the chemotherapy was causing so many issues and I was spending more time attending appointments to sort it out and having it than days out the hospital. I was truly fed up and spent most days exhausted and lying on the sofa. It's finished now and already I am feeling so much better and touch wood the immunotherapy has thus far is much easier.

I was trying to recall if you are on any sort of treatment at the moment but I am guessing probably not? I wonder if how you are feeling is recent or if something has triggered it lately? Maybe the headaches and feeling ill? If so and you are worried it could be worth talking to your team about it. Even if it is what you think, lots can be done.

We understand the rough patches and the can't keep doing this but sometimes it's worth talking things through and keep pushing through as scary as that sounds.

like you say however, if you do not want any intervention, no one should be able to force you. However, if this feeling is more recent, I would suggest taking time to talk and think carefully.

I can't crochet but have recently started to knit again to try and improve my concentration with a view to going back to work, and making some clothes that may actually fit as everything is huge on me. It's therapeutic and helps my dexterity too (I can't feel properly in my right hand).

I am even thinking on getting a few bits of clothes too. Not much, but it's a whole different headspace to where I was a month or two ago. 

Honestly I thought I wouldn't make Xmas and now I am keen to go back to work.

Take it easy, pamper yourself a little or a whole lot. Talk and try to do one thing a day that makes you smile.

P.S. I also want to get to see the northern lights too, I wanted to see the wonders of the world in person was on my bucket list. Things like the pyramids, Niagra falls, northern lights....

I just wanted to sit quietly and supportively with you, whilst you are feeling like this,

Hi

How nice to hear from you and, more important, to hear that you’re feeling better.

I can relate to so much of what you say. I had a very rough few months in the run up to the new year and was feeling so down that I didn’t think it worth buying the half price Christmas cards. In four weeks covering the end of October and beginning of November, I had 16 hospital appointments in 20 working days. The Christmas holidays consisted of me cancelling plans either because I had another hospital appointment or I just wasn’t well enough. Thankfully Christmas itself was spent in the company of my family who looked after me. 

 I have turned the corner though now and I’m feeling much better. I’ve written about it elsewhere so I won’t repeat it here. 

One of the decisions I made while I was unwell was that I won’t do anymore chemo. The idea of feeling that unwell and making it worse and last longer by pumping in more poison made no sense. 

So does this feel true now I feel better? I think so. I’ve talked to my daughters about it and they agree. I have been in more or less continuous treatment since November 2016, I’ve had just three months without doctors pumping in poison. There comes a time when you have to take control and say enough is enough. 

Will this remain true when decision time comes? I don’t know. But I do know it’s my choice and I feel more in control for having taken a hold of that idea. 

So as others have said, it’s up to you. It’s your body and your choice. I realise you face difficulties that I don’t, including your mum, your deafness and living alone. But I hope that taking control of your decisions will help you to feel stronger too. 

My love to you both 

xxx

Dear Ginajsy and Daloni

i didn’t cope with the liver biopsy. Also in 2003 I had n complete hysterectomy with the removal of everything but my cancer nightmare started even further back to 1997 with tumours found in my ankle. I got told they will always grow back. And they do. I had one removed from my arm in the lates 2000s and another one in the same ankle. I promised myself after the hysterectomy that I wouldn’t put myself through further treatment. None have been offered, they have said my cancer is inoperable and that chemo isn’t possible. I’m relieved there. Also I’m very spiritual with being a mix of Native American, Romany and Celtic. I’m not afraid of dying, to me it will be a release. But God isn’t finished with me. He wants me still around for some reason, it’s up to God when it’s my time. He knows best.  I have my cats, I will never forgive myself that as I was dying to take my life, the people I entrusted my cats to temporarily, disappeared my cats. It was a nightmare. It doesn’t matter as to whether they were microchipped. The police visited the people, said I’d given them to them. Then when the police were resent back to them, their excuse changed to another. But my mum’s social worker knows how much I love my cats. She knows I wouldn’t give them away as my mum and I have an arrangement that they will live with all the others with my friend. My mum’s social worker even supported me in all the five months they were missing. I think she was worried about them too. The CID became involved and they were found, Because Draco was a sickly cat, he’d run up a vet bill with them and I had to agree on paying it before both of them could be returned. I hate myself for selfishly putting my own suicide attempt first and putting my lovely cats at risk. My cats are my glue. My cats are a responsibility I need, my cats need me in every way. My mum needs me by my visits. 

Anyway im lucky that I have a roof over my head, can visit my mum, share my home with my cats, help the homeless on my night shifts, writing my book, my artwork, my crochet and knitting.the ability still to walk, eat and go on my trips, especially to London.  Just that I get scared. I did make a promise to my Mum’s social worker when I was discharged after the suicide attempt . I promised her if I started to get down and such, that I would go and find someone who would be there for me. Guess what? My next door neighbours, who I didn’t get on with, have actually proven to be a great support. Loads of people have shown and provided me with that support ever since. If I’m honest, l love my life, just scared of it all being taken away.