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Hillbill
Posts: 6
Joined: Sat Jul 23, 2016 11:14 pm

6 weeks!

Postby Hillbill » Wed Jul 27, 2016 9:14 am

It is 3am and I can't sleep. I am still reeling from the shock of it all.

6 weeks ago today my dad (a very healthy 75 year old) had the results of a blood test taken by his GP. He had gone as he had been feeling nauseous and had noticed his urine had changed colour. The Doctor informed him that he thought he may have pancreatic cancer. He told myself, my 2 sisters and 3 step sisters that day. It was a mega blow, especially as my step mum had died last November.

A week later he had started to become quite jaundiced and unwell and we all agreed that he should move to live with my sister so he could be nearer us all. As he hadn't had his hospital appointment yet we transferred everything over to the Blackburn area and he was seen very quickly. He had a CT scan, bloods etc within 2 weeks of his initial doctors opinion which confirmed a tumour in his pancreas. As he was, by this time, very jaundiced, he was booked in for a stent and biopsy and prescribed creon.

Unfortunately the first attempt at stunting and biopsy failed. He then waited a week and a half for a second attempt. Day by day he was getting more and more jaundiced and feeling very unwell, particularly being troubled by incessant itching.he couldn't eat or drink much and whatever he did eat and drink didn't stay down. He felt "full" all the time and was constipated. he said like he was blocked. Several phone calls to the specialist nurse and the GP resulted in laxatives, suppositories, anti histamine etc, none of which gave him any relief. He was getting weaker and more and more unwell.

The 2nd stent attempt, Thursday of week 4, was successful and we all heaved a sigh of relief. That was a premature reaction! Over that weekend dad deteriorated further and by Monday am he was very unwell and we were seriously worried about him. My sister managed to get him an appointment with the GP and I rang the helpline here. I had been using the website for info and advice and had been reading a lot on the forums. The GP prescribed more piraton (!) the nurse on the helpline listened and spoke to me for half an hour, she was incredibly empathetic and helpful and suggested that dad should really be in hospital. We tried to access hospital via both the GP and the specialist nurse to no avail. Instead I was advised to take dad to A&E as this would be the " quicker" route. 11 hours later, at 1.30am and after a long wait on a trolley in a corridor he was finally admitted to a ward. His bilirubin levels were 540, 100 more than before he had had the stent fitted.

I can't believe that that was only a week ago.

Since then things went from bad to worse with all of dads symptoms getting worse not better. On Sunday they rechecked the stent which still appeared to be working but we were told that his liver and kidneys had failed and that they didn't know why, but there was nothing more that they could do for him. On Monday we had to tell dad this , with the help of the consultant, as dad still felt he was " on the mend"! That was the most heartbreaking conversation I have ever had to have. Dad was horrified, but then went into sorting mode, speaking particularly to my uncle about his wishes.

On Monday afternoon the consultant came back with the offer of kidney dialysis as they still did not know why the failure had occurred. We asked them to repeat the CT scan first to see if it was because the cancer had spread as we didn't want him to suffer through any unnecessary procedures. The CT scan revealed that the tumour had spread rapidly , that it had almost encompassed the stent and that both kidneys and liver were also affected.

The Macmillan nurses came yesterday and all treatment has ceased, he's not eaten or drunk for 3 days, fluids were stopped yesterday. The only treatment dad is receiving is for the itching - he is still scratching incessantly. He says he is in no pain. He is getting weaker by the hour and today only had a few moments of lucidity. Having said that, he still clearly says "pardon me" every time he burps! Polite to the end.

We are taking it in turns to stay with him, night and day. The nursing staff have been fantastic, although like many of you we found the 'system' to be dreadful initially - communication and information sharing has been awful.

Dad is still with us, but we know we don't have long with him now. He has been the best of men, the best dad, step-dad, husband, friend. We just cannot understand or come to terms with how quickly this has happened.

I wanted to write something here as I have had to scour the forum to find any other case that has happened with such speed. It is not a happy outcome, but then there rarely is a happy outcome with pancreatic cancer.

I would like to say a massive thank you to the specialist nurses on the helpline. They have been the only people to properly listen and to explain in detail what is going on. i cannot thank them enough for that and for giving me the confidence to take action and to question the medical opinions.

Hillbill (my dads nickname for me!

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: 6 weeks!

Postby Proud Wife » Wed Jul 27, 2016 9:15 am

Just posted on your other thread. I did wonder about the title. Why don't you delete this one and change subject on first thread?

Hillbill
Posts: 6
Joined: Sat Jul 23, 2016 11:14 pm

Re: 6 weeks!

Postby Hillbill » Wed Jul 27, 2016 9:21 am

ive just deleted the contents on the other one, couldn't delete the post altogether!
i will go back and try and change the title too.
thanks

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: 6 weeks!

Postby Proud Wife » Wed Jul 27, 2016 9:29 am

Hello Hillbill

Welcome to the forum. I'm really pleased you have already made contact with our WONDERFUL specialist nurses, they are truly amazing.

My husband survived 14 months. We met a couple quite by chance on holiday during one of his chemo breaks and 5 days after returning home, the husband had been diagnosed with stage 4 PC (exactly the same as my hubby with liver mets) and died 11 weeks later. He was absolutely fine on holiday.

You have drawn an even shorter straw than that and I am so very very very sorry to read your story. It must have been and still be such a massive shock, you cannot come to terms with something like this so soon. There are no words really but pleased rest assured you will have the same type of support you had from the specialist nurses, from what we call the forum family, i.e. carers and PC sufferers who are going through or have gone through the same but from an experience perspective, rather than medical of course.

It's not going to make you feel better but they are other cases where it has happened even faster, that's the nature of this particular beast. It can be very aggressive, totally unpredictable and evil to the core.

I only hope that your dad's care team are able to make and keep him comfortable and that you are able to get some much needed sleep.

We are here if you need us.

Much strength
PW x
Proud Wife

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: 6 weeks!

Postby Proud Wife » Wed Jul 27, 2016 9:30 am

I've copied and pasted my original reply above, will now go back and delete original post. i think that once W&M deletes her post, you should then be able to delete the entire thread. But I could be wrong!

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: 6 weeks!

Postby Proud Wife » Wed Jul 27, 2016 9:31 am

That didn't work! Don't worry we can all use this thread and your first one will go further down as other threads are used.

Hillbill
Posts: 6
Joined: Sat Jul 23, 2016 11:14 pm

Re: 6 weeks!

Postby Hillbill » Wed Jul 27, 2016 10:17 am

Thank you.

I knew nothing about pancreatic cancer before this. I still don't know much. But this website and forum has helped so much during some long sleepless nights. I feel desperately sad for so many reasons, but the 2 that are most at the forefront are that my dad was really keen that his body should go to medical research - this is no longer possible as he hadn't signed the consent form yet and he also has edema ( he doesn't know this though, which is good). Also, he never got back home to put all his affairs in order as he was waiting for the stent to be fitted to "feel well enough". This has really bothered him right up till yesterday.

Thank you for your comments and your help, proud wife. I am also very sorry for your loss. What a terrible illness this is.

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: 6 weeks!

Postby Veema » Wed Jul 27, 2016 1:46 pm

Very sorry to read about your dad...it is an awful disease. I hope he can be peaceful and comfortable now.

Lots of love and strength.

Vx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: 6 weeks!

Postby Dandygal76 » Wed Jul 27, 2016 10:38 pm

I am so sorry Hillbill. We all think we have drawn the short straw by PC becoming part of our lives and then we hear stories like yours and Aimees and we realise it wasn't quite as short as we thought. How is he doing tonight? How are you doing? x

Hillbill
Posts: 6
Joined: Sat Jul 23, 2016 11:14 pm

Re: 6 weeks!

Postby Hillbill » Fri Jul 29, 2016 5:03 pm

Dad died yesterday morning. Literally 6 weeks. We just cannot believe the speed that all of this has happened. Can't make any sense of it.
Thank you for your message x

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: 6 weeks!

Postby sandraW » Fri Jul 29, 2016 6:41 pm

Hillbill,
I am so sorry to hear that you have lost you lovely dad to this truly horrendous disease, 6 short weeks, no wonder you are in shock, but it is not unheard of to loose someone so quickly as the disease often gives just niggling symptoms until he later stages. At least your dad is no longer suffering, I am sending love and strength to you and your family, take care sandrax

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: 6 weeks!

Postby Dandygal76 » Fri Jul 29, 2016 7:47 pm

I am so Sorry Hillbill that you lost your wonderful dad. My thoughts are with you and your family at this time and I send you so much love. x

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: 6 weeks!

Postby Proud Wife » Fri Jul 29, 2016 8:06 pm

Oh no, I'm so sorry to hear your devastating news Hillbill. 6 weeks was no time at all. You are not going to make much sense of it for a while. Please just be aware that you will always get support on this forum if you need it.

My sincerest condolences to you and your family.

Take care x

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: 6 weeks!

Postby Wife&Mum » Fri Jul 29, 2016 10:16 pm

I'm very sorry for your loss and send you my sincere condolences.
W&M xx

PCUK Nurse Dianne
Posts: 287
Joined: Tue Aug 14, 2012 3:29 pm

Re: 6 weeks!

Postby PCUK Nurse Dianne » Tue Aug 02, 2016 1:19 pm

Dear Hillbill,

I am sorry to hear of your sudden loss, and please accept our sincerest condolences on behalf of the nursing team at Pancreatic Cancer UK. I am sure this is a very sad and difficult time at present, however please do feel free to be in touch again at any time should you have any questions that we may help with.

With our heartfelt sympathies,

Pancreatic Cancer Specialist Nurses,
Pancreatic Cancer UK Support Team