And more and more and more bad news

Tricia, the way your husband and yourself has been treated is disgusting.

I am so sorry to hear your news, but you

should not always believe what doctors

say about a prognoses, there are lots of

members on Mac that have proven this,

so take one day at a time, and i hope

that will be a very very long time. It has

been a shock for you and understandably

you are scared, and your emotions are

all over the place. Is there a family member that you can talk to, or have you

seen the Macmillan nurse yet. Come on

here and let your feelings out, people

understand what your going thru, you

can let yourself go and hopefully you will

get good advice and a shoulder to cry on

I was going to send you a pm, but i cant

seem to get thru, but you can send me

one anytime you want to talk.

With Love Lucy Lee. xxx

Oh God Tricia - you have been treated appallingly and anger is top of my list too. Like Lucy says - hope you've got people around though no-one can really soften a blow like this. Maybe telling a Macmillan nurse would help to get your thoughts in order before tackling the 'team'.

As far as the prognosis goes plenty of people go far beyond what they're initially told so hang in there - is it possible for you to get a second opinion?

wishing you all the best

kx

I can only add my disgust to the earlier comments. I am so very sorry for you both.  We have had some rough treatment from the NHS, but nothing to compare to this.  When we have problems, I complain and complain and then colmplain again.  But you have so much else to deal with now, and complaining can be a very exhausting and time consuming proceedure, precious time that you will want to spend with your husband.  I wish you   some really good quality time together, and hope you will be able to make some wonderful memories to treasure.

Stay strong, and use this site to get anything you need to off your chest

Love

Daffie

Hi Tricia

Sorry to hear how bad things are for you.  I had a completely different experience at Clatterbridge - I had a lot of respect for my consultant, even though I've been discharged from there now as they can't be of any more help to me.  The consultant I saw wasn't always available on my visits, due to holidays etc, but he was great at answering emails - usually within a couple of hours.  As I have melanoma, it won't be the same person - however, I would suggest asking a member of the admin staff to give you his email address - and you could try this route.  I know that email is not everyone's favourite form of communication, but I found it really helpful to be able to plan what I was saying, sticking to the facts, without all the emotional baggage of a telephone conversation.  You've also got the reply to refer back to if you forget what he's said.

This may not be of much use to you - but it's just a suggestion.

hi tricia,

sorry for the hell you have both been through...... but dont get that time scale stuck in your head... i was told i had 3 to 4 months to live in march 08... im still here and planning to be here for longer still....(read my biography)... i know a terminal dx is un describable you cant get your head around it ... and i found that i was at the "acceptance" stage long before any of my family... my poor hubby is still struggling... but we are making the most of everything.... is so easy to just give up... but i refuse to .. every morning i wake up and mentally lock my secondary tumours (5 large ones in my liver) in a big box, i kneed them in like dough, telling them to get back in the box... i dont know why my mind lets them escape during my sleep... but i get them back in every morning... i know this might sound silly to you, but i think its part of the reason i am still here.... never give up....

good luck liz xxxx