Pancreatic Cancer Timeline - 2018

[Hyperfocus]

Hi all

I've just joined here to outline my dad's 4 week diagnosis to the end timeline. Hopefully it will benefit others in some way as preparation.

Dads PC journey

Age 62

Late Jan 2018 - complaints of pains in abdominal area. Go to A and E who checked and confirm it is hernia.

Feb 2018 - complaints of pain in lower back and abdominal area. Dark urine present. Slightly yellow skin and eyes. Go to GP. Does 2 blood tests to confirm Type 2 diabetes. Prescribed diabetes medication. No referral to hospital/specialist.

2/3/18 - Surrounding people notice distinct yellow skin and eyes. Complaints of severe unbearable back pains in the night.

3/3/18 - walk into A and E who decide to keep my dad for ultrasound scan and CT scan.

7/3/18 - ready to take him home thinking its just a small issue. Consultant calls family in and told it is bad news. Diagnosed with pancreatic cancer and has advanced to a point where surgery is out of the question and even chemotherapy will be of little to no benefit. Results show spreading to liver and possibly bones also. Yellow skin and eyes aka jaundice is getting worse. Bile / bilary duct is blocked hence the jaundice. Dad is walking and talking as normal.

2/3 days later - biopsy done to assess cancer and transferred to liver and pancreas ward.

13/3/18 - liver surgeon confirms the diagnosis including spreading to bones and says chemo unlikely to happen or make a difference. Told best case 12 months of life, worst case 2/3 months.

Mid March - Attempt to Install Stent (ERCP) to unblock bile duct and remove jaundice, otherwise will become extremely itchy. Stent install not possible due to cancer making connection between stomach and bile duct too rigid. Normally it is flexible.

Mid/late March - PTC installed through the side with a tube and drain bag to drain the bile. Yellowness starts to disappear after a week. starting to vomit dark green fluid regularly. Becoming weaker

29/3/18 - Another ct scan reveals large volume of fluid blocked in stomach. Tube through nose put into stomach to syringe vacuum out nearly 4 sick bowls of dark grey fluid. Results reveal that stomach outlet duct is now blocked due to the cancer spreading. Told that stent install to unblock stomach duct is scheduled. Dad is still talking normally but has become weak and is not mobile. Frustration and occasional shouting at people.

1/4/18 - Double bank holiday weekend after which told that no stenting will take place due to extreme weakness of dad and will be too risky to undertake.

2/4/18 - Entered state of Delirium where mind starts to deteriorate. normal speech has started to disappeared. Words arnt as sharp anymore. Completely immobile. Urine tube and catchment added. Hallucinations begin and a lot of sleep talking. Eyes are half open with a lot of drowsiness. Snaps in and out of reality responding to people half the time. Mouth constantly open. Cannot eat anymore. Fluids can be consumed. Recognises people and goes in and out of conversations randomly. Occasional shouting at people. Pains every time he is moved to the side on the bed.

8/4/18 - no sanity left. Many hallucinations. Little to no response to surroundings. Mucus building up in throat and mouth and not being spat out after numerous requests and urges. Breathing giving sounds of gargling due to build up of mucus. Possibly known as the so-called "Death Rattle". Not sure.

9/4/18

My father's pulse stops and is confirmed as no longer alive.

From diagnosis to death was 4 weeks. He was walking talking and joking 6 weeks ago and now he is gone. This is a deadly form of cancer and I urge you all to get yourselves regularly checked and make sure you have a good GP. I would even invest in private scans periodically especially if cancer runs in your family.

He was a great man and a loved character. With no education, he grafted long hours in factories in his youth and there were times when we literally had no money for a loaf of bread when we were young, something we came to learn as we grew older. He invested his time and money into us 4 children and our mum, into our education and today we stand proud in our respective professions; an

engineer, teacher, social worker, and accountant. And we wouldn't be here without his support.

Don't forget to hug and kiss your loved one today, everyday.

May God be with you all.

Edited April 17, 2018 by Hyperfocus

[sandraW]

I am sorry to hear about your dad, this disease is relentless, my husband's story was different he had his tumour in the tail of his pancreas, he had surgery, then 21 rounds of chemotherapy, he had a good 15 months when he could function well, it was only for the last 6 weeks of his life he was in any real pain, same scenario as you re the stent in the bile duct, drain was fitted but he died very peacefully

10 days later. Thank you for sharing your story and the hope that it can help others, please take care, sending love and strength sandrax xx

[Justamo]

Hello Hyper.

I'm so sorry for you, but that feeling is tinged with respect for your concise (and pragmatic) summing up of the ghastly situation in which you find yourself and which many of us share.

We all have different timelines. Peter had a year and five months. What counts is quality, and it doesn't sound as though your Dad has had much of that since he was diagnosed. What we have all learned, from this forum, is to make the most of the good times and to let off steam about the bad times right here. It's a vicious, evil disease and you need all the support you can get. We're all here for you.

I think delirium was the hardest part mostly because nobody really believed that it was delirium and not an infection, and partly because when Peter gathered his senses together he could remember all the things he said and did and saw during the delirium spell. I could sometimes halt it by telling him loudly and firmly that he was confused, and treating him like a stroppy toddler but it broke my heart to do it.

Stay strong. It doesn't sound as though it will be for long.

Take care,

Love Mo

[PCUK Nurse Jeni]

Hello Hyperfocus,

Thank you for your courage and bravery in posting your dad's story on the forum.

I would like to extend our sincere condolences to you and your family at this tragic time - we are sorry for your loss.

It is heartbreaking to hear your dad's story, but the way you have written this out is very clear, and although undoubtedly upsetting, it honestly shows how difficult this disease is in terms of the speed at which it takes hold. I am sure this must have been difficult for you to put this down in "print" so to speak, and see it written there also must have been painful.

I wonder whether you have received any support at all throughout this process? I can only imagine that this was upsetting for you to have to come to terms with in such a short space of time.

It sounds as though your dad was a wonderful person, and you have great memories of his strength to look after all of you. I am so sorry that you lost him to this disease.

Please do not hesitate to contact us (details below) if you feel we can help at all.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707