Out of the blue diagnosis - advice needed.

[endee]

Hi

Last week out of the blue after a very short period of feeling unwell, my Mum was diagnosed with pc with liver and kidney secondaries. Originally she went to the hospital with a swollen ankle. Blood tests were taken which showed liver changes. A scan was arranged and WHAM, our world fell apart.

She saw a consultant yesterday who confirmed diagnosis but she has to be refered to another hospital as they do not deal with pc at our local one. She has been told that chemotherapy "would" be the only treatment offered but not for definate it will. I, like others on here have trawled the internet hoping that the next site I visit re pc will give better news than the previous. But it doesn't. Because surgery is not an option the prognosis looks very bleak.

Mum is very weak, does not say much and I think in shock. i am so worried that she does not have the energy to fight this although no treatment has been started yet.

My sister has been staying this past week with Mum and Dad but will return home at the weekend to return to work for a week.

How do we start the conversation of care required. I and my Dad work. Mum needs someone there at all times but don't know how to start the conversation about care share and what mu Mum wants.

Any advice will be very much welcomed.

Thank you.

[Nardobd]

Hi endee and I'm sorry to read your post.

I'd say exactly the same to you as I have written to Sophie on http://www.pancreaticcancer.org.uk/discussion/viewtopic.php?f=4&t=623

As to care, ask the hospital to put you in touch with the local Macmillan organisation. They can offer both practical and emotional help. So, they will have suggestions as to how you might start the discussion and may even be able to offer some nursing care.

Kind regards

Nicki x

[endee]

Thank you for your reply. I am hoping that they will accept my help with care. Cannot at this moment in time even think of someone else doing it. i am lucky enough that my work is flexible. I will broach the subject of Macmillan Nurses as I do think Mum could do with someone that could talk to her and she could relate her fears to without feeling she would be upsetting us.

endee

[endee]

Today has been difficult. My Mum, understandably is withdrawn and angry. Not speaking to my Dad who is frustrated by her disinterest in everything. A horrible day.

[endee]

It is now nearly 2 weeks since diagnosis. We do not have an appointment yet regarding treatment options and Mum is getting weaker and so down. Don't know what to do for the best or which way to turn.

[laura]

hello endee, so sorry to read about you and your familys distress, it is such a shock getting news like this particularly when its unexpected, we all felt the same im sure, the unknown is so frightening. please do contact the macmillan nurses they are so lovely and helpful, they will be there for the whole family, of course your mum feels angry and withdrawn, i think its a natural reaction, keeploving your mum sometimes just a cuddle and holding hands speek volumes its very early days really to be able for your mum to talk about how she feels, sorry this rambling is not very helpful but i do really feel for you all, try to stay positive and strong for each other, anger will sap your strength, take care love laura xx

[endee]

Today has been another bad day. mum is deteriorating so quickly. She can hardly stand or even hold a glass to her mouth. The district nurses have been in and we are getting some equipment to make life a bit easier for her. It is only 2 weeks since diagnosis and still nearly a week until she sees the oncologist. She has now oramorph for any pain which thankfully does seem to be under control. Getting her to take any fluids or food is such a struggle.

Love you Mum. xxx

[Nardobd]

Oh endee I'm sorry to hear that your Mum seems to be deteriorating. Would it be worth phoning the hospital to see if she can get in to see the oncologist any quicker?

Love

Nicki x

[ali]

Hi Endee

I am thinking about you and i know what you are all going through.

It will be six weeks tomorrow since we lost my mum to advanced PC with liver mets

It is heartbreaking.

As with you, my mum had only been feeling loss of appetite/to hardly eating/abdominal fullness and very tired since maybe March/April/May.

She got admitted on 26th May and i felt she was fading away in front of us (the hospital staff did not realise how ill she was).

It was 8 days before she had a CT scan (knowing from an out patient clinic appt. that her liver was enlarged on 10th May and no previous ill health--she was 79years )

We were told the diagnosis on Tues 7th June (and they told her )

We bought her home on Wed 8th (thinking for a few weeks of decent end of life care with all of us around her. (my sister and i are both nurses--and withcommunity staff support )

It was not to be-- on Fri 10th at 4.30pm she got a syringe driver set up for symptom relieve and more or less fell asleep.

She slept away on Sunday 12th June at 8pm.

We are all devestated.

I can hardly type this for crying again.

But all i can say is we are thankfull she did not suffer too much or too long, as i believe reading and listening to others that this illness can have awful symptoms that can go on for weeks.

She did not get to see the Hospice nurse as he was due to visit the following week (as arranged by the hospital )

I am due back at work next week and do not know how i will manage.

All i can say is hug her and talk to your mum as she will still hear you.

I keep trying to think that the rapid deterioration was best for her But it was so quick.

i have not posted much on here but have been looking at boards nearly every day ( i am so glad i joined this on 25th june )

there is someone called Sophie on other board going through much the same scenario---it is happening all the time and the history of " VAGUE symptoms for a period of time " seems to echo throughout these boards.

We had a retiral collection and raised £577 and sent this to PCUK.

Every morning when i wake up, i have to think--have we really been through this--but yes we have but it is so hard.

My thoughts are with you and your family.

My dad died in 2005 but he had been ill--awful too---but this is so differant.

take care

Helen xx

a

[lynbo]

Dear endee

I think you should ring the hospital and ask them for an appointment ASAP, it's not good enough, but if you don't pester you don't get, love to u all

Xxxx

[endee]

Thank you all for your messages. Less than 2 weeks after diagnosis Mum fell asleep forever. The speed and devastation of this illness has left us numb. We stayed by her side 24 hrs a day for her last 4 days with us. We just hope and pray that Mum knew we were there and did not feel alone or frightened. Our world has changed forever, but I was very priviliged to be her daughter.

xx

[Nardobd]

Oh Endee, I'm so very sorry to hear your news. My sincere condolences to you and all of the family. I'm sure your Mum knew you were there for her and felt the love around her.

Take care and remember we're still here if you need to talk.

Sending thoughts of strength and comfort up for you.

Nicki

[ali]

Hi Endee

I am so sad and sorry for your loss, i did "comment " to you on Sat ( as i thought you were much in same position as us only 6/52 ago )---it is so very hard but for your mum and mine--it has to be easier--than dragging out with horrible symptoms etc.

I know these words do not help now or to me maybe never

But people keep saying "it will get better "--at the moment i/ we cannot believe it

Thinking of all your family

Belive me you get through the funeral etc.---that is why there are funerals--too keep everyone really busy for at least 1/52

Again Thoughts With You

Helen xx

[PCUK Nurse Jeni]

Dear Endee,

This is very sad news. And indeed, very quick. It is a devastating blow to you and your family.

Please accept our condolences on behalf of the charity.

Kind regards,

Jeni.

[lynbo]

Dear Endee

I'm sorry about your mums passing, she is out if pain, and I know that she will have known and felt your love for her whilst you stayed with her in those last few days, they say, that even when out of pain, hearing and sense are last to leave the body, so she surely knew you were all there for her.

Don't be a stranger, lots if live to you and your family

Lynne

Xxxxx