My poor mum pushed from pillar to post

[empsol]

We thought my mum had a blockage in her liver the surgeon removed a gallstone did a biopsy and sent mum home,back in hospital the week later not well but still no biopsy results everything fine your bloods fine go home, no contact for 2 weeks mums got jaundise how strange still no biopsy results chase the hospital over 2 weeks various specialists to be told "oh your mum missed her appointment to see the specialist for the results" reply "she was in hospital"oh well come next week

In the meantime my mum received a letter on Sat 8th Sept from another hospital to see a specialist in the outpatients clinic on Monday 10th Sept @1400

Call from my sister 999'd mum too ill to attend specialist appt today going to casualty now. I arrived at A&E @ 10.30 spoke to secretary of consultant asked someone to come and tell mum what the biopsy said as I knew she needed to see the specialist at the other hospital "oh no problem she replied I'll send the macmillan nurse" ( Oh God please no )

Macmillen nurse came down to casualty told my mum she had cancer and she needed to go to see specialist no internal ambulances will have to take in car with wheel chair

So discharged from casualty off to MRI by car sorry mum no ambulance

All 4 kids together now specialist arrives sorry youve got pancreatic cancer and weve got no beds go home we'll call you introduced to the specialist nurse .

Called day later got bed come in left on the assessment ward for a week no doctor called the specialist nurse promises to visit but forgets again,Friday evening 14th Sept Doctor arrives trys to discharge my mum taking up a bed - Called PCUK thank god for you and your reassurance we would have gone mad

Monday 17th Sept family called in by specialist to discuss mum theyve done a catscan arrived at 5pm

pushed in small office 4 kids,1 specialist and one of his colleges

Sorry he says I'm late for a meeting your mum has got stage IV cancer with mets in the liver "how long we say" 6 months with chemo weeks without " Sorry specialist says got to go late for meeting"

4 kids go to canteen "What do we do , do we tell her" Can't believe whats just happened my poor mum, panic sets in with the 4 of us as we start to understand that my mum could be gone before Christmas. Decide not to tell mum go visiting as usual too much information to process for mum in one week need help

19th Sept -specialist tells mum scan results says specialist nurse will explain everything - Nurse forgets to turn up again

Mum hasnt eaten anything for 11 days ask for Fortisip drinks told a dietician has to approve as they're expensive wait 2 days still not approved start shouting nurse gets drinks they are on the ward

Mum hasn't opened her bowels for 2 weeks -

Mum not being washed we are caring for my mum on a rota basis at visiting time waiting for the oncology appointment

Mums getting more poorly by the day - Tell nurse we want to take mum home Thurdsay 21st

Discharge nurse comes immediatly lets plan for Monday 24 Sept "she says"

Ambulance booked for 4pm,Doctor informed,district nurse booked lets go

Ambulance picked mum up at 9.45pm she's exhausted,brothers have decorated her bedroom shes happy to be home

District nurse arrived on Tuesday decides mum's a non urgent case visit once a week

get physio re enablement teams in - Independent living !!!

We have to care for my mum on shifts me and my sister over night she cannot get out of bed on her own we're working full time sister in laws, aunties and brothers on a rota

Very poorly we get 3 weeks of poo in one night no aprons,no pads no gloves nothing have bought the Kylie sheets, walking frame, comode, well my mum is a non urgent case

1st Oct Called oncologist secretary to ask about mums appt she says "It will be about 2/3 weeks"

I say "oh we were told on the 19th Sept you had mums paperwork whats the delay "

Secretary says "Doc very busy " reply "Well my mums got weeks to live without chemo bit of a waste of time if the appt is in 7 weeks after diagnosis " Call in the afternoon appt for Thursday 4th October

Physio arrives gets mum out of bed with walking frame we bought (Non urgent case)

mum poo's doesn't know physio sits mum in the chair mum in pain takes her back to bed

mum full of poo chair full of poo bed full of poo - physio leaves

Call from Aunty about what physio has done poor mum shes mortified

Is it really only 2 weeks since we found out the worst news

I called Macmillan told them everything that had happened a wonderful nurse came immediatley no record mum has cancer revised all mums plans and rota care

This is a terrible disease and no one wants ownership district nurse arrives apologises for incorrect care plan

My sister got it right when she said someone should just tell mum to go home and die

that is how she has been treated

This post is not for sympathy its for people who read this to write to there MP's to write to government to know that if you've had a recently diagnosed love one fight for the correct care

Today has been a really good day my mum has her own nurse they will forge a great relationship and she can stop trying to look after us for the first time in her life

[yorkypaul]

Jusus this has moved me to tears. What century are we living in? I feel that our case is just a few steps behind yours in terms of lack of continuity of care and competence. Sometimes it's a lack of care and interest by the individuals concerned, but more often than not it is faults in the system or lack of funds or both. I hope that you now get the care that your precious mum deserves. Please keep us posted. It is essential that PC is brought to the forefront of the public mind. Only then might it get the attention that it desrves if we are to stop its unrelenting, unfeeling cull of our loved ones.

[empsol]

Thank you so much I have also read your forum and know how hard its been for you,the support of this site and the other families who are experiencing the same things are invaluable for information and support.Keep you posted after Thursday when we see the oncologist fingers crossed

[laura]

oh dear dear dear, this takes some believing doesnt it? i am so very sorry for what your dear mum, and you her family, have experienced, shouldnt be me apologising shud it?.

i know our situation is differant to many on here, but even so we have had lots of drs, hospital visits, nurses etc involved and i am SO grateful we have not had this experience.

have you considered going to your PALS office,? they would be able to assist you sorting out this terrible mismanagement.

a lot of "posters" on here do not say which area they live, would be interesting to see if this bad management apertains to certain areas?

apart from a bit of a hiccuph when bri was admitted over a bank holiday with an infection, this was in the very early days pre attempted whipple, there wasnt anyone available to make the decision to do a 2nd stent, bank hol over, was soon sorted.

i do so hope that things improve for your mum, and that she now has a good team looking after you all. best wishes and love to you all laura xx

[susikus]

What a terrible story, I am so, so sorry to read it. Your poor mum and I feel for all of your family as well. This must be so hard for you all. Having PC is hard enough but all of these struggles are making it so much harder. I am glad that, finally, you seem to have someone helping you, and I wish you well for seeing the oncologist on the 4th (oh that's tomorrow! where did september go?)

Will you go with your mum to see the oncologist? May I suggest that you write things down - as they are said - and let it be seen very clearly that you are writing it all down. Ask for everything to be explained clearly, especially if anything is difficult to understand. The whole NHS is a vast system and as we have all found communication often breaks down. In it there are lovely people who do care and do want to do their best and sometimes the system works against them and sometimes they are also ground down by it. There are lots of junior staff and they do not have the power or experience or knowledge to be terribly helpful.

Another tip - ask their name - and write it down! Let them see that you are writing it all down and they will be careful in what they say and how they say it. Be polite and friendly and ask lots of questions and don't let yourself or your family lose their temper. I don't mean to sound harsh because there is so much over which you could justifiably lose your tempers. But if you do then the medical staff will help you less, not more, and in their eyes it somehow becomes your fault - this is human nature and they are working, day in, day out in a vast and uncaring system.

I hope this helps, even if only a little bit. Big hugs to you all and I do so hope all goes as well as it possibly can tomorrow, with love, Sue

[charney]

OMG your post is just unbelievable, your poor mum, I hope she is getting the proper

care she deserves now. We were very lucky with Audrey and the hospital staff in xx were just amazing, the only negative we had was her macmillan nurse who was very hard to get hold off and her manner was very blunt. After reading your post I can only count ourselves lucky in the care that Audrey received.

My thoughts are with you all,

best wishes

cheryl x

[NICOLA]

God, thats awful, my mum too suffered alot of incompetence throughout her care I often used to say what century are we living in here or is this a third world country ? It is so frustrating.

I hope your mum is getting the care she needs now. I hope you are staying strong.

Nicola x

[empsol]

Thankyou for your kind posts I am dreading tomorrow and the appt with the oncologist

but we will all be together when we hear the news

We have a list of questions and are hoping mum can cope with the Chemo

We live in the Greater Manchester area and are told by the district nurse that they are dealing with an increase in pancreatic cancer in mums area

Has all this happened in just 2 weeks -

Will posat tomorrow about the outcome of mums appt

CarolynX

[empsol]

susikus wrote :

> What a terrible story, I am so, so sorry to read it. Your poor mum and I

> feel for all of your family as well. This must be so hard for you all.

> Having PC is hard enough but all of these struggles are making it so much

> harder. I am glad that, finally, you seem to have someone helping you, and

> I wish you well for seeing the oncologist on the 4th (oh that's tomorrow!

> where did september go?)

>

> Will you go with your mum to see the oncologist? May I suggest that you

> write things down - as they are said - and let it be seen very clearly that

> you are writing it all down. Ask for everything to be explained clearly,

> especially if anything is difficult to understand. The whole NHS is a vast

> system and as we have all found communication often breaks down. In it

> there are lovely people who do care and do want to do their best and

> sometimes the system works against them and sometimes they are also ground

> down by it. There are lots of junior staff and they do not have the power

> or experience or knowledge to be terribly helpful.

>

> Another tip - ask their name - and write it down! Let them see that you are

> writing it all down and they will be careful in what they say and how they

> say it. Be polite and friendly and ask lots of questions and don't let

> yourself or your family lose their temper. I don't mean to sound harsh

> because there is so much over which you could justifiably lose your

> tempers. But if you do then the medical staff will help you less, not more,

> and in their eyes it somehow becomes your fault - this is human nature and

> they are working, day in, day out in a vast and uncaring system.

>

> I hope this helps, even if only a little bit. Big hugs to you all and I do

> so hope all goes as well as it possibly can tomorrow, with love, Sue

Hi Sue

Thanks for the info, too brow beaten to lose my temper still cannot believe all this has happened over 2 weeks

Will post tomorrow re the outcome of mums appt

CArolynx

[Hope56]

I'm crying - not that it is too difficult to do these days. I have a very close relative dying from PC and there are similarities in our stories. I read this forum daily (sometimes more often) and although there are some hopeful posts- on the whole there is a feeling that our loved ones are seen as hopeless cases and consequently no one seems willing (or able) to manage the complex needs that those suffering from this despicable disease have. They need specialist care from professionals with specialist skills and experience. By that I don't mean clever consultants who pass the buck but caring nurses and health care professionals who will come in and enable patients to manage symptoms and support them and their loved ones to deal with and hopefully come to terms with the process of this disease and it's eventual outcome. I know some of you have positive stories (Laura for one) but sadly too many of us don't. I am not in a position to post more personal information as I have directed my dear one to this forum for support and wouldn't want them to know that I have been sharing their story. However , I have kept a log of the whole sorry, shameful journey that my dear one has had to endure. When the time comes I will send it to where I feel it should be heard and shout loud and clear to let as many know what absolutely shocking care (or lack) of there is for those unfortunate enough to be struck down by PC. This forum is one amazing place where the power of people support is at it's best. Thank you all. I hope your Mum's care improves and more than anything that her suffering is eased.

[DRAD3]

I am too moved to tears at this truly awful situation - your poor mum - what an absolute nightmare for you and your family - I am so sorry and so angry on your behalf. My husband died in April, aged just 46, after a 15 month battle with this nasty disease and although I cannot complain about the care he received I only wish that we had been more aware of the disease and its symptoms. Perhaps if it had been caught earlier...

Every day (today it was ovarian cancer on Daybreak), there is some news story trying to raise awareness about various cancers - considering how deadly PC is and the fact that some big names (let's face it, celebs can do wonders in bringing issues into the public arena) - Patrick Swayze, Steve Jobs - it is still treated like some dirty little secret that needs to be swept under the carpet - WHY? PCUK is working hard to get this out there and talked about in the same way lung, breast and bowel cancer is - all we can do is help them, talk about it to everyone we know, raise funds for PCUK. In the meantime, all we can do is support each other as we put up with this vicious unwelcome intruder in our lives. I do hope that your mum gets the care she deserves and is entitled to - sending you and everyone love and strength.

Deb

x

[empsol]

Hello

Been to [Name removed - moderator] to see the Oncologist today not good news mums too ill to have chemo referred back to Macmillan so will update tomorrow

[DRAD3]

So sorry that no treatment is possible. You must be devastated. Do hope the macmillan nurse can offer you some hope that your mum can be cared for and you can share some good quality time together as a family. Know that you are not alone - I know we cannot take away your pain but we are always here to listen and understand.

Sending lot of love

Deb

x

[laura]

carolyn, sad to read about the news you have been given about mum, i am sure that you will get so much help and support from macmillan, for all of you, i really do not know what else to say, words seem so inadequate at times.

i truly feel for your mum and family and hope she will get the care and support she deserves, we are all here for you, take care of you as well, thinking of you, love laura xx

[susikus]

Oh Carolyn, I am so so sorry. I hope that MacMillan and your district nurse team will now give your mum their best attention and help her to feel comfortable, and that you and your family get some good time to spend together. Have you involved the GP as well? Please, when you are able, do let us know what is happening. We are all thinking about you and wanting the very best for you and your mum, lots of love to you all, Sue

[yorkypaul]

Oh Carolyn i am so sorry that your mum is so ill. Remember you will need to nag like a terrier to make sure that she gets everything she needs to be comfortable. I have found, to my cost and that of my loved one, that if you (or others) don't keep asking and pushing and checking, you sometimes get overlooked.

You are in my thoughts.

Hugs,

Paul

[empsol]

Just to say thank you so very much for your kind comments

My mum was admitted to the hospice on the 10th October for respite care the disease progressed very quickly and she died at 7.05am on the 23rd October 2012

5 weeks from diagnosis and we are arranging her funeral

The hospice was a wonderful place and we were with mum all the way through until the end

We will continue to campaign for more funding for this horrendous disease

[yorkypaul]

I am so sad to read of the loss of your dear mum. I am glad that you were able to be with her and that you found the hospice to be a good place for her. I lost my wonderful mum just 3 years ago, and understand totally how you are feeling right now. I will eventually lose my lovely wife to this terrible disease and will have to find the strength to cope with it. One of my crutches is this amazing website and the lovely people on it who understand completely.

Please accept my thoughts and prayers and do use the site as a means of support when you need it.

Big hugs,

Paul

[laura]

i am so very sorry to read that your dear mum, has lost her fight, hardly before it began, when oh when, will diagnosis be able to happen SOOOO much sooner, and hopefully be able to save people, my love is being sent to you, also best wishes love laura

[DRAD3]

So very sorry to hear that your Mum has died but grateful that she was cared for well in the hospice and that you were able to be with her. This awful disease just seem to do its worst at such a frightening speed for some, it shocks and saddens me so much. I agree with you about working to help PCUK in raising awareness and research funding - we must start shouting on behalf of our loved ones so that this awful situation can change soon.

Sending you lots of love and strength to get through the coming weeks and months. We are always here for you whenever you need someone to listen.

Take care

Deb

x

[rachelqt]

Dear Carolyn,

Sorry to read about your dear mum. I lost my dad 2 weeks ago and like yourself found the hospice a fantastic place and they made everything so much easier for dad. Such an awful disease and more needs to be done!

Takecare Rachel x

[susikus]

Carolyn, I am so sorry to read about your mum. My husband died a day later so we, too, are now thinking about funerals. PC is a vile disease with so many, many things that can go wrong. Hugs for you as we walk on together...

love Sue

[empsol]

Still reading about this horrendous disease

My brothers and sister are struggling to work out what happened

We didn't have time to process the information and my mum was being given a midazalam driver to help her with dying the hospice didn't know how the cancer had progressed so quickly, it's like dealing with a sudden death. We were lucky that all but one if us has a business so we nursed my mum to the end. When I put on the forum my mum had died I was in a fog now I just can't make any sense of what has happened and I am do devastated for mum that she had so little time

We must lobby our MP's and get more research funding for this despicable disease

Carolyn

[louiepc]

Dear Carolyn

I am truly sorry to hear about your mum, 5 weeks is no time at all to get your head around the fact that your mum is ill, let alone dealing with this awful blow.

You must feel numb.

Take care,

louie xxx

[PCUK Nurse Dianne]

Dear Carolyn,

I am sorry to hear of your mother's passing after such a short time from her diagnosis. Please accept our sincere condolences from all at PCUK, our thoughts are with you at this time.

I am sure after 5 weeks of processing all of this; trying to come to terms with the diagnosis, organising and seeking support and information that you must feel that you have lost time. It is admirable and wonderful that you were able to nurse your mother, and I am sure she would have appreciated that more than anything else.

If we can help again with any information or clarification please do not hesitate to contact us either by phone (020 3535 7099) or email (support@pancreaticcancer.org.uk).

kind regards,

Dianne

Support Team