Pallative care

[4567tel]

Well after a couple of phone calls I am booked in to see the p,care doctor next Week so things are moving just fed up with it all now

[Kji378]

Hi Terry

I just need to say how brave I think you are. You are amazing, I love the Peacock on you profile picture. That says a lot (whether you chose it yourself, or it was one that is automatically assigned on here). It is beautiful like you - I mean your soul and bravery.

Just know you are not alone and everyone on here is and will support you all the way on your liver journey.

It must be so very cruel and daunting, so stay strong, believe in yourself because you are wonderful and keep ticking the boxes. Keep talking to us on here.

Lots of gentle hugs 🤗

[4567tel in reply to Kji378]

Thanks Kj I feel now all though I don’t broadcast it that it be over sooner than later if this is what it is like at this Christ knows what it will be like as it gets worse now the consultant say sai£ there is nothing more can be done

[Kji378 in reply to 4567tel]

Oh no..I am so sorry if I have made it worse for you. I promise I did not mean it as such. 😟

Do you mind if I ask you have family support or someone close with you, to be there. 💞

(Edit) there could still be hope, a lot of people have been told no more can be done, but they have persevered and are on here to tell their story.

[4567tel in reply to Kji378]

Kj don’t be silly you haven’t made it worse lol it’s just how I feel fed up baffled with will the jargon symptoms that come and go being tired oh lots of things but the one thing that gives some comfort is talking to others on yes my partner and sister help me a lot best regards Terry

[Kji378 in reply to 4567tel]

That's good, you have them with you. I'm sure you will have more support coming your way soon too, from people on here.

Just day by day, do whatever make you feel comfortable. Keep talking, because it's better than keeping it in to yourself.

The "jargon" is tricky sometimes, I understand how you feel in respect of the Liver Lingo being like learning a new language. Perhaps sometimes let everyone else translate it for you, if I don't understand some terminology I ask them to put it into Delia Smith terms. That might sound bonkers, but it helped me.

Day by day I think as I've previously said you are very, very brave. 🤗

[Zukosmile07 in reply to 4567tel]

Now then Tel.... I bet you were a bit of a fighter 😉, infact I bet you still are. My dad is 72 and old school, he still would give me a good hiding. I had a fair old battle with my liver, I used to have arguments with it. I'm not crazy, it sometimes gave me that much jip, I started shouting at it. (Please vouch for me Kji, I know you did 😆). You always have us to shout at buddy you are part of the liver boat crew, don't hesitate we have all seen/been through something like or similar to you. So if you need a chat or a moan or a smile just crack on and type.

I wish you all the best 💯

Danny x

PS my liver nearly got me twice and I had to fight it off twice. One of those times I was on this forum. I went for a gall stone removing and ended up with kidney failure. Now the lovely members were there everyday until I got better 🤩. Also when I had my transplant they were there again, I couldn't of wished for a better bunch of people because they helped get me through. 😘

[4567tel in reply to Kji378]

Hi kj well I decided today to have a bath had good soak and then I could not get out of the lol my partners son had to lift me out it was the wrong decision as it left me exhausted how are you today

[Kji378 in reply to 4567tel]

Good evening Terry..sorry for late reply.

That's a shame, we'll I hoped it helped while you were in. I used to think, emptying the bath or shower plug was (might sound weird) like washing all the bad negative away for the day. However, you got out with help, so despite it leaving you exhausted you did it! Well done 👏

I'm ok, thank you for asking. I had an MRI other day, checking to see if cells in liver have grown or shrunk, ie could be HCC (cancerous) or hopefully just scarred from the Cirrhosis. Helped a friend just out of hospital from a major operation (not liver related) managed a little stroll with the pooch. Sorry not very helpful for you, I know but if it passes a bit of time then that's good. Something else for you to think about I hope.

I'm hoping you have some kind of pain relief. I'm guessing ascites, HE, jaundice etc are some symptoms with you? I won't question any more. I just hope you can cope as much as is possible.

It's pretty quiet where we live, a seasonal town. It is mayhem in the summer. The last year, because of Covid and travelling it was crazy busy last year. I stay away from the visitors, the screaming kids, angry parents, sunburnt children demanding icecreams🍦 The caravans cloggng up the narrow high street that take hours of redirecting, delivery lorries, all get huge road rage. Have to laugh sometimes as that's what people call a holiday, yet end up grumpy and miserable.

If you all you do is rest at the moment, perhaps read or watch some funny things, - things that make you smile, laugh, chortle. Do you draw, or paint? If not try something new, it doesn't have to be in an amazing studio - I don't mean that....just a pad, a doodle, see what they turn into? It's all kind of therapeutic, the brain produces different chemicals when in that goes into this 'mode'. Give it a go.

Keep chatting, here if needed, even if you need a moan, groan - just as everyone else is too.

Lots of gentle hugs. Easy on the baths. Can you get any mobility aids for getting in and out? Just another thought.

Take good care, speak soon 🙂

(Sorry for any typos or bad spelling, I've not read this back to myself) ❣

[4567tel in reply to Kji378]

Good motning kj yup flarę ups of jaundice, itching and spore very sore breasts. Feel I am getting weaker each day or my Im turning into a hypochrodiac anyway hope you have good day it looks cold out there

[Kji378 in reply to 4567tel]

Aww 😔 it's horrible bless you.

"I have a chat with the palliative care doctor tomorrow" ~ that is today is it?

[4567tel in reply to Kji378]

Hi kj well been to the hospice , wonderful people the doctor has got my partner and A counsellor for my partner and i changed some of meds arranged for pain patch every 7 dąys and arranged a care plan for me Iwould really sugest that if you can try and get seen by your hospice the doctor was. Really good she discussed everything in great detal super woman

[Kji378 in reply to 4567tel]

That is brilliant, it must be a kind of relief and so reassuring that you have people there for you to support and understand, for yourself and your partner.

I am not sure if I have read your message correctly, or you mean for me / myself to get seen by hospice ~ either way it doesn't matter. I am doing my best from having a Decompensated liver (it was quite a struggle), to now having a compensated liver that is doing its best, so I consider myself very lucky. I'm not in the same situation as yourself, but that doesn't mean, I can't support or try to help as much as I can.

Good news for the pain relief patch. Know that we are all thinking of you, sending lots of positive care. Sometimes, I wish we could just reach through the screen to just hold your hand. 🖐 - well there is mine anyway.

Speak soon and take care. ❣

[4567tel in reply to Kji378]

I meant you it’s worth a try terry

[Kji378 in reply to 4567tel]

Thank you Terry, I will remember that. Are you managing to eat ok? 🙂

[4567tel in reply to Kji378]

Today I have manager to eat and I have to go to the toilet wonderful info lol

[Kji378 in reply to 4567tel]

Great stuff ...do not worry about sharing toilet info' 🙂 you are most definitely not the 1st or the the last to share such news, in fact yours is very tame compared to others, including myself.

It is a bit grey and nothing funky weather wise to report here, I'm afraid.

Also I am away fir a few days until Sunday on an adventure for a big birthday, apparently the signal is not very good, so I might be hanging out windows with a colander or sieve on my head, trying to get reception! So bear with if I can not reply faster. I will be back 🦾 😃

Rest, eat, keep chatting to people on here, keep ticking the boxes. Put some good music you enjoy on. 😊

Take care ❣ 🤗

[4567tel in reply to Kji378]

Have a good time

[Kji378 in reply to 4567tel]

Hi Terry, hope all as well as possible and you are still ticking the boxes, managing to eat ok.

We went to Port Isaac today. Doc Martin aka Martin Clunes, no where to be seen, but I don't rate him as a good doctor anyway 🤣 I'm joking. It was very quiet but interesting.

[4567tel in reply to 4567tel]

That sounds super hope you had a great time. Nothing much here usual things broken sleep, itching , conkers up my nose but hey ho liver to go lol. Doctors phone call tomorrow afternoon sounds ominous Most probably to ask what religion, or how I am eating lol ok good to hear from you regards Terry,

[Kji378 in reply to 4567tel]

Good afternoon Terry 😊

Have you had the phone call from Doctors yet?

I hope he/she gave you some good advice ❣

[4567tel in reply to Kji378]

No still waiting but phone is playing up

[Kji378 in reply to 4567tel]

Fingers crossed you will have either heard by now, or tomorrow. 🤞

[4567tel in reply to Kji378]

Hi kj well doctor phoned the hospice and has added more tablets steroids, stronger anti nausea, and pain patch. The doctor said he wanted to take me to a football match I said that’s good of you he said no not really my rattle has broken

[Kji378 in reply to 4567tel]

Aww your doctor has a good sense of humour. Who (very big EDIT) DOES he support though? You might want to rattle him! 😂 sorry.

[4567tel in reply to Kji378]

Morning KJ well had really late night last night ( chatting with my sister ) really good talking about when we were kids and past things How are you good I hope loads of things to do today more paperwork and learning how to use these bands to strengthen my legs ((some chance) Imsothin now my sister’s dog tried to bury me in the garden lol regards Terry

[Kji378 in reply to 4567tel]

Hi Terry that's lovely news, talking is a must. How great your sister and yourself can have some fond memories, aww that's fab.

Im not sure if you mean the bands on your legs are like the ones that are weighted, to build up muscle? Do you mean those, or the ones that look like protective cricket shin pads (to keep your mobility stable)? Well whichever, I hope they help you.

You still have a great sense of humour A MUST! Good on you. I can imagine. Can you or are you able to have Fortisip Protein shakes or the likes, I put them in coffee, or with milk on cereal. You can just drink them, they are not very big bottles 125ml but full of everything you need, to help put on weight.

I am OK, thank you for asking. I'm just about to do a post about my battle with Cirrhosis and how today is exactly going to be my 4th year of abstinence.

I have just had an appointment made to see if I have any Varcies that need banding. Fingers crossed because that's not a nice experience but could be worse so must grumble. The operation is fine, they put me under Propofol so I am out of it, but had to have 2 Varices (grade 2) banded, better that than a bleed, most definitely. No results of MRI but it does take a while as we know, especially with the pair NHS staff off I'll themselves or family are with Covid.

Have a good evening, lovely to hear your news...try a bouncy ball for the door get a cricket bat if it comes near you!

Take care 🤗🤗🤗

[4567tel in reply to Kji378]

Hi kj these bands are like thick rubber bands that you use as resistance I done about ten minutes with and I was knackered legs ached and shoulders were sore and the good news on the orders of my sister were that I’ve got do it again tomorrow aargh. I have ordered one of those air fryers so that’s comIng tomorrow then one of the guys I worked with going to pop in for a chat so it’s all go here I’ve had some strange pains in my lower stomach area and chest today like dull aches weird ok hope you are well Terry

[Kji378 in reply to 4567tel]

Hi Terry, apologies replying I had a hospital visit yesterday (nothing to do with Liver related issues- makes a change) so was a bit up to my eyeballs.Also 1st Feb, Tuesday just gone , is going to be my 4th year of no alcohol so I posted my new and received lots of lovely replies. Encouragement goes a long way.

Anyhow, going back to your last text with me the rubber bands - the resistance bands you are using, I know exactly the ones you mean. I had a green one, they feel weird, doing the exercises, but with it, so keep on with using them. Really good all rounder as they help legs, arms, shoulders like you mentioned - I'm not surprised you feel sore. Your sister sounds a lovely lady and obviously cares so much for you, heed her advice and go for one extra exercise every day. Good for you! Don't let the dog get it though or you god knows where you will end up. 😁😆

Air fryers are good, it took me a while to learn they cook quicker than normal ovens, grills and to turn the heat down a little less or it burns quicker. Good idea.

Hope you had a good chat with your work friend.

Pains hmm get back to your GP or Consultant.

Take good care ❣

[4567tel in reply to Kji378]

Hi,ku how are you feeling this morning 4years well that’s something to shout about the air fryer arrived and all three of us crowded around trying how to make lt work thick or what my friend turned up and we had good old chat and boy did we have a lot to to bash our gums about . Nurse coming this morning glad because I have been feeling really giddy this last few day’s . I will let you know results later best regards Terry

[Kji378 in reply to 4567tel]

Hi Terry, any results?

Gums...I have those fake plastic things they call false teeth, 5 top plate and 5 on bottom plate, they are really rubbish, had final fitting still sound like I'm lisping and do a few unintended spits now and again. I had to have a biopsy from the roof of my mouth, looks like I have to have another one. It was horrible after they tooth the 1st one, the stitches were like having a hairy pork scratching constantly there. Still just healing now two months ago.

Nevermind, we have something else in common. Polygraph or Fixodent...that's my quibble! 🤭😬😁😁😁😁

Air fryers are just getting used to them, like I said before, they take less time, but can burn things quicker, so check or get someone to check and turn the temperature down.

[Kji378 in reply to 4567tel]

Hi Terry

How are things going? Just checking in 🤗

[Lantana100]

Well done on taking more control of the situation and booking the palliative care appointment Tel. I’m sure they will be able to help you a lot moving forward and their support will be invaluable for you and your family. As the others have said, keep posting on here. We are all rooting for you.

[Hidden]

Hello, Our nurse led helpline is available Mon-Fri 10am -3pm shoul dyou wish to talk things through on 0800 652 7330

Take care ,

Trust9

[4567tel]

Well I have a chat with the pallative care doctor tomorrow getting very nervous about it what direction will it take what questions will be asked

[Hidden]

Hi 4567tel, i know that Trust9 has posted earlier - but I just to say good luck for today. If there are any questions or discussions with palliative care that you aren't ready to have, it is absolutely fine to say that you aren't ready to discuss that yet. I hope that it goes well and you find it helpful and supportive. Also, write everything down - it can be difficult to retain information when you are feeling so overwhelmed. Keep us posted,Trust10.

[4567tel]

Hi Ninę been to the hospice today really wonderful people Isaw a doctor specialised liver disease and ha organised a care plan for my partner andI pain patch etc Everybody was really good .

[Hidden in reply to 4567tel]

Hi Terry, thank you so much for the update. I'm so pleased the visit went well. That's great that you saw a doctor specialising in liver disease - I'm impressed! Keep us updated as you feel able,Trust10 x