Well its been 10 days today since i was told that my liver cancer might not be curable.
You ask what have they done NOTHING yeah i cant believe it either,
I have phoned them telling them how stressed i am, The secretary didnt even know who i was so i told her everything and she was going to sort it out, Well still nothing, what am i supposed to tell my kids the doctors dont give a shit.
I'm sorry none of this is making sence to me its just me rambling on i cant see an end,
I feel like a deflated ball a shell of the normal me i have always been up beat positive and happy go lucky but the last few days have really taken there toll on me physically and mentally.
I really am trying to find my PMA (positive mental attitude)
Will keep you all posted if and when i get that call from the hospital
love and hugs
from a deflated bus driver xxxxx
FormerMember
What a situation to be in. I really feel for you, to have that kind of diagnosis and then just LEFT!!! No wonder you feel like you have had the stuffing knocked out of you. I don't think that even a Saint would be able to find their PMA!!!! I know what it's like to be left with no support from those 'professionals' who supposedly work in the 'caring profession'.
Have a BIG hug from me and sending you lots of positive thoughts until yours can kick in again.
I too felt like they had pressed the Reject button on the conveyor belt, and that was that. Did they give you an "Open" appointment? That is where they say that they won't make another appointment now, but you can ring when you need them and they will "try" to see you within two weeks? That's what I was told - me thinking, blimey, with "3-4 months" as the prognosis, I just wasn't sure that I would know when to ring, and then if I'd last the two weeks! HOWEVER look at me, Lady Rose: they told me 3-4 months, and that was 17 months ago. DO NOT GIVE UP HOPE NOW. I know how you are feeling. Do you have a Cancer MacMillan nurse? I found that mine was very helpful with lots of advice about benefits, help etc BUT she did not question the prognosis either.
Have you had a second opinion yet? We are entitled to one, and although my old hospital seem reluctant to forward my old scans, it seems possible that they mis-read the Final Prognosis one slightly. It may be that another hospital looks at things in a slightly different way, gives you more hope, even offers other treatment. It's worth a try.
Sending you hugs and love (and stroking my lucky wood for you - well it's worked for me so far) xxxxxx Penny
Dave and I made it to Little Rock, Arkansas today and we are fed and settling in to the hotel. I'm thinking about you Rose...like I don't have enough worries, uh? But despite all of that! You are on my mind. Take some deep breaths, take some walks and look around. Do whatever you can to take the edge off and keep doing what you are doing and being persistent. Tell them there is a large contention on the website waiting to hear just what they are going to do about it! :) Love, Lori
It may not work but at least you will have some sense of achievement.
Write to the Chief Executive at the Hospital and ask what they are going to do about it. If nothing else, they will have to answer your letter within 21 days.
Ask for a Macmillan Nurse, to support you and your family.
Waiting for a telephone call is deadly, especially when the call doesn't come. But they are obliged to answer letters. All organisations are obliged to answer letters.
You can try phoning the PALS office (Patient Advice and Liaison office) and they are more likely to return your call. They may also be able to get more response from the cancer centre than you can. Even if you get a call from someone at the hospice, don't knock it. They are pretty good at helping you with pain management and home support.
