Re: Recently diagnosed, our journey so far.

Dear Curlwurly35,

This must be incredibly hard for you and your family.  I strongly suspect that your mum knows she is not going to get better.

What support are you all getting?  Have Macmillan nurses or Marie Curie been involved or mentioned?  How involved is your Mum's GP?  Are district nurses coming in?  You should not be having to manage the emotion and end of life decisions on your own without professional help.  It is mentioned a lot on the forum that we don't have expiry dates stamped on the bottom of our feet and whilst it's not an exact science, I do believe that professionals (such as Macmillan or Marie Curie) do have an indication as to how long an individual might have. 

Even if your mum does not want any involvement from Macmillan or hospice, they can still support and help you and the rest of the family.  Your Mums GP or consultant should be able to get this done immediately for you

I forced my sisters GP and consultant to take my sister back to hospital and tell her prognosis.  It was just not something I felt I could do on my own.  Nobody had officially told me a timescale but her decline was rapid and she needed to know that chemotherapy was no longer an option.  We all thought she didn't 'know' but my sister eyeballed her consultant and asked him how long she had.  He told her 2 months at best and she died 2 weeks later.  Those 2 weeks allowed her to do the things she wanted and needed to do and despite us thinking she didn't know the true picture, in reality she did.  I'm not trying to be blunt- what I'm trying to say is if you go with your gut and if you feel she is declining quickly then do what you can now for her.  Put your energies into what you can control now for her. 

You have been doing everything for her that you possibly can - please don't doubt your actions and decisions.  Use your energies to continue to do the best for her and spend time with her.



In the stars now . . . .

Re: Recently diagnosed, our journey so far.

Curlwurly35.....I am so sorry to hear of the latest developments.  My heart is with you and your family.  May these times of anger and regret be replaced by love and tenderness.  These are the most precious of moments to harness forever.
Hugs and tons of love,


Re: Recently diagnosed, our journey so far.

Dear Curleywurley, I too am sorry for what your Mom and you are both going through. I believe there comes a time when we trade places with our parents, a very hard thing to do and Mom is not doing herself any favors. IF she is nearing the end she is using what energy she has on anger and discomfort. It takes a lot of good energy to have that not so good attitude when it is needed for her comfort. This is a time for making a few more good memories even if they are at home and the bottom line is comfort. I would talk to her Doc and ask him what he would do if it was his Mom. I do have a short article on how to know if the end is near and would e mail it to you if you like. I only do that if someone requests it. I also like Clare's idea of having your Mom's GP tell her what is really happening. Best of luck to you and Mom.


Re: Recently diagnosed, our journey so far.

Dear CurlyWurly,

I'm so sorry to hear of your Moms progress.  I can 100% understand how you are feeling with regards to Prof Lodge.  When Dad was diagnosed he chose to listen to Dr Bramhall at the QE and have chemo, we never got to chemo due to Dads bilirubin being to high despite 3 metal stents.  I often wondered if I should have pushed Dad to see Professor Lodge sooner, rather than when we were told in the September that chemo was no longer an option.  I felt we wasted 6 months but this was my Dads choice and we had to respect it.  I did write to the macmillan nurse Catherine at the QE after Dad died and she passed my email onto Dr Bramhall highlighting my concerns regarding not operating on Dad as Professor Lodge would have done. He replied to me offering to send my Dads scans to another hospital for their advice as he was certain an operation wouldn't have saved Dad, it may have given him a few more months but the quality wouldn't have been good. This did make me feel more at peace with our decision.  He would have spent his last days possible in Leeds, miles away from family.  His wish was to be at home, which luckily was able to be. Perhaps you could mention this and all your other concerns to the QE, and see what they have to say.

As for weeks or months, nobody knows. Nobody as a expiry date stamped on them, and I know it's hard but you really have to live day by day. Dad was told by Russells hall hospital he'd got 2-3months, he went on a further 7. My heart breaks for you as I can remember every day of Dads journey with CC.

Thinking of you all x

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".

Re: Recently diagnosed, our journey so far.

Hello everyone,

Thank you all for your support and encouragement. Unfortunately Mom passed away last week due to her CC.

She was taken back in to hospital 6 days before she passed, Dad had a phone call in the morning to say Mom was agitated and distressed and that we should all go to the hospital to see her.

Mom passed away shortly after we all arrived, we were all with her and told her we loved her.

Even though it was expected it doesnt prepare you for when it does.

There will always be a big void in out lives as Mom was such a bright and bubbly character.

We have lost a diamiond but the skies have gained a star.

Re: Recently diagnosed, our journey so far.

Dear Kate, I am so very sorry to hear about your Mom. I know that you know she is now in a kinder and more peaceful place. Please accept my condolences
and know that mothers never really leave their children and she will always be around you.

To my dearest family some things I'd like to say
But first of all to let you know that I arrived okay,
I'm writing this from Heaven. Here I shall dwell with God above
Here, there's no more tears of sadness. Here is just eternal love.
Please do not be unhappy because I'm out of sight
Remember that I am with you every morning, noon and night.
That day I had to leave you when my life on earth was through
God picked me up and hugged me and He said "I welcome you,
It's good to have you back again,
you were missed while you were gone,
As for your dearest family, they'll be here later on.
God gave me a list of things that he wished for me to do
And foremost on the list was to watch and care for you
And when you lie in bed at night, the days chores put to flight
God and I are closest to you . . in the middle of the night.
When you think of my life on earth and all those loving years
Because you are only human, they are bound to bring you tears
But do not be afraid to cry, it does relieve the pain
Remember there would be no flowers, unless there was some rain.
One thing is for certain though my life on earth is o'er
I'm closer to you now than I ever was before.
There are many rocky roads ahead of you and many hills to climb
Together we can do it by taking one day at a time.
When you're walking down the street and you've got me on your mind
I'm walking in your footsteps, only half a step behind
And when it's time for you to go . . from that body to be free
Remember you're not going . . you're just coming here to me.


Re: Recently diagnosed, our journey so far.

Dear Kate,

I am so very sorry indeed to hear of the passing of your dear mum. Please accept my sincere condolences. Having lost my dad to this disease I know the pain that you are feeling right now. Please know that we are all here for you and y thoughts are with you and your family right now.



Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Recently diagnosed, our journey so far.

I am so sorry to hear of your mom's passing. I'm glad you were with her at the end. My condolences are with you and your family. I pray the hurt and anger can be replaced with acceptance and you can fill your thoughts with wonderful memories you have of your mom.

"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Recently diagnosed, our journey so far.

so sorry to hear of your loss.