No decision today, disheartened

[jules45]

Hi everyone, as promised I said I would let you know if I'm listed today. Just had the phone call from QE to say I need further tests. Neuro and the pain team. So I'll have nothing to report for a while.

Feel a bit down in dumps but thankyou to all of you for ýouŕ support

Julie xxxxx

[Countrywalks]

I do hope you get listed youve tried so hard your very very brave i admire your courage .x

[jules45 in reply to Countrywalks]

Thankyou, its nice people care xx

[Countrywalks in reply to jules45]

I follow your posts and care a lot you need support your a loveley person xx

[jules45 in reply to Countrywalks]

That is very ķind of you

Thankyou xx

[Countrywalks in reply to jules45]

You deserve it and i hope you have a loveley weekend ☔watch out for the storm keep safe xx

[P13jne]

Hi Jules, possibly not the outcome you were expecting, but they may have other ideas to help you. Try to put it out of your mind and enjoy your weekend. Or you can always chat with all of us on here. Looks like it’s gonna be a sunny weekend in Scotland. That’ll help keep my brain, (the little bit that’s still functioning) busy.

Always here for you hunni, Jane xx

[jules45 in reply to P13jne]

Hi Jane, yes I agree, its not worth being depressed over the weekend. I get to see my partner on Sunday so I'll ĺook forward to that xxx julie

[alfredthegreat]

Sorry to hear that Jules, after your anxious wait for the answer. Hopefully after the further tests you will get your listing. Sending you a virtual hug. Alf

[jules45 in reply to alfredthegreat]

Hi Alf, thanks, the reasons are as above, so more trips to Birmingham xxx jjulie

[Wass71]

Hi Jules, really sorry to hear you have further tests to do. I will be thinking of you and hope the move forward quickly.

Best wishes x x

[jules45 in reply to Wass71]

Thankyou so much, julie xx

[Hidden]

Sorry to hear about your extra tests, added anxiety. Fingers crossed that all will work out for you.

Good luck and stay positive,

Mark.

[jules45 in reply to Hidden]

Hard to keep smiling with the prospect of góing back there time and time again without being listed. Pain management will help me so it's worth going for that, but I've got to go on my own now cos partner can't take any more time off work xx

[Hidden in reply to jules45]

It is a very long and difficult place, thoughts are with you.

Mark. x

[sunnysmile]

Hi, can't really add anything here but sometimes life gets very testing - it would seem like it for you All I can add is because I believe in angels and the power of them (I know u guys who don't - don't laugh) but every time I ask for help - it happens!! If you do, then ASK. If you don't ask anyway cause they will help you.

You are alone in Wales and need this - so ASK for that listing xxx you have nothing to lose other than thinking I am a complete nut case - but promise you I am not; just feeling for you xx

[jules45 in reply to sunnysmile]

Your not a nut case,, I've read stories about guardian angels. I will pray to someone, not sure who

Thanks for your thoughts

Julie xx

[jojokarak]

I am sorry your not on it yet!!

I had to have extra testing before they put me on it, please don't be too disheartened you will get on it they just need to be thorough that you will survive and I am positive you will xx

[jules45]

Thank you jo, ìts heĺpful to know youve had the same. Ive read many of your posts and you've been through it

Best wishes, julie x

[Smyally]

Sorry you are having to go through extra tests. This all adds to the anxiety. I hope these get sorted out soon and you get some better news. You deserve it xx

[jules45 in reply to Smyally]

Thankyou for those nice words

Julie xx

[Jammymags]

Hi Jules, I was thinking of you today as we met at the assessment days last week. I hope you get mpositive news soon. Stay strong xx

[jules45 in reply to Jammymags]

Yes, it was a long day waiting by the phone. Just have to remind myself there are people worse than me. They also want to check cancer hasn't spread

I'll keep you up to date

Julie xxx

[Huggy7614]

Hey Julie, so sorry it’s not more positive news at the moment. But stay strong, and fingers crossed for after the tests. Thinking of you. Andy

[jules45 in reply to Huggy7614]

Thanks Andy for that, just feel a bit exhausted by it all

Julie xxx

[Huggy7614 in reply to jules45]

Hi Julie, I know what you mean. It’s an absolute roller coaster ride isn’t it. And you’ve got more of a ride than most!! Stick with it. Andy

[Marydel63]

It must be disheartening, wish you had more of a decision. Hoping for speedy testing and being listed soon.

[jules45 in reply to Marydel63]

Thanks so much

Julie xxx

[Hidden]

Hi

Sorry you've got to go through more testing. Will be thinking of you. Love and hugs Lynne xxxx

[jules45 in reply to Hidden]

Thanks for the love and hugs

Julie xxx

[Grank]

You’ve come so far. Hoping you will have a plan in place very soon. You are in our thoughts.

[jules45 in reply to Grank]

My plan is to phone them if I haven't heard anything in 2 weeks and stay strong xxx julie

[Grank in reply to jules45]

Yes. My wife phoned them twice a week. I think it’s important to be proactive. Do you have an allocated nurse who you can contact directly?

[Hidden]

Every one has a guardian Angel, I am sure yours will sort it

Plus of course a very good team at the QEH

I know what the travelling is like, but it will be worth it!

[jules45 in reply to Hidden]

Hi, its the travelling that is the worse part of it over 2 and half hours and the hospital is massive and I can hardly walk xxxxx julie

[Hidden in reply to jules45]

I really understand, it has been at least 1.5 hours for me for 7 years,

At first walking through the QEH was a major effort.

I can truly sympathise, but now its over and the transplant has been done it has been worth it.

I should have asked for a wheel chair, but never really thought of it.

My thoughts really go out to you, and I will light a candle for you on Sunday and send a request for your guardian angel to help.

David 👍

[davianne]

Oh no Jules, more tests before you get a decision😢 the constant trips from Wales must wear you down. All I can say is try to keep a positive mind until your next visit, and I will be praying for a good outcome and you being listed. Chin up,

David

[jules45 in reply to davianne]

Hi, yes, they want me to see neurologist about a bleed on my brain last year, then check cancer hasn't spread then see pain management about the pain killers I'm on

3 more visits at least and the journey is awful.

Thankyou for support xxx

[davianne in reply to jules45]

Oh you poor girl Jules, I am so sorry you have to go through all this, just to get listed. I will keep everything crossed , and say a prayer for you.

David

[Paulwil]

Sorry to hear about the delay. I also had to have further tests twice.

I was also disheartened, the hospital did say this was quite normal as the information they have gathered normally dictates further scans/ blood tests. This happened twice. I was listed a couple of weeks later.

Best wishes.

Paul

[jules45 in reply to Paulwil]

It's nice to hear that someone else has had delays, at least they haven't written me off completely

Take care, julie xxx

[GrannyDoll61]

Keep the faith jules! Took my hubby a year to be listed then he got the call 2 days after being listed. Very successful transplant a year ago and having a lovely life. Xxx

[jules45 in reply to GrannyDoll61]

What a positive outcome, thanks for that, thankyou xx

[Hidden]

Chin up darling, stay positive, keep smiling Xx 😃

[jules45 in reply to Hidden]

I won't lose my smile.....yet but its hard to think straight playing the waiting game thanks

Best wishes, Julie xxx

[Hidden]

Im sure it is. Be thinking of you. All the best xx

[jules45 in reply to Hidden]

Thànkyou for your message

Bèst wishes

Julie x

[Jans1953]

Hi Jules. I too had no answer on the Friday as I expected. Had to wait and have a CT on the Thursday evening. No call on the Friday but I thought they needed time to review it. They I got a call on early Sunday hours to say they had a liver. I never even got a call to say I was live on the list and he Transplant Co-ordinator said she didn't realise I was live on the list either. Wait for the tests and then after that things can happen very quickly. Good Luck xx

[jules45 in reply to Jans1953]

Thank you for that interesting reply as ive got a feeling that ill be tested then a sudden call. Nice to hear that from you, thankyou

Julie xxx

[P13jne]

Hi Julie how’re you doing, Jane x

[jules45 in reply to P13jne]

Hi Jane, how are you. I'm off my food at the moment for some reason however I've started on protein suppliments from Birmingham hosp dietician. Been pottering In the garden, watering and weeding. Partner here until tonight then boring day tomorrow

Take care, Julie xxxx

[P13jne in reply to jules45]

You sound brighter though, so long as you’re eating something that’s good. I live on yogurt and scones. Prob not the best things to eat but better than nothing. Hope the weather stays good, it’s a bit overcast in Scottieland 😆 always here if you get bored just chat to me. Jane xx

[jules45 in reply to P13jne]

Id be happpy on yogurt and scones. Partner màde dinner àñd ì haď two forkfulls. I'll get some scones tomorrow. Pm me would be a good idea. Love scotlanddrove to carnoustie for the golf once xxxx