Hubby recently diagnosed inoperable Pancreatic Cancer

[Millie1963]

Hi, my darling husband Patrick was diagnosed a few weeks ago with stage 4 PC which has spread to the blood vessels and a few lymph nodes, they have said it is inoperable and we are totally devasted and in shock. We have been together for 30 wonderful years and had made plans to take early retirement in August, he is 61 and I am 57, we were so grateful to be in a position to be able to afford to do this, then the bottom fell out of our world

I spoke to a very kind and helpful Senior Nurse at the hospital whilst he was having a stent put in because he was jaundiced, she said that they wanted to do a CT scan to see if the cancer had spread to the lungs and heart. She told me that if it had then we were looking at weeks and if it hadn't then months. I asked her about chemo and she shook her head and said 'quality not quantity' she said that he would go down hill fast and that we should make plans to enjoy the time we have, sooner rather than later, we were so grateful for her honesty. Fortunately the CT scan showed that it hasn't spread to the lungs and heart, so I gather that we are looking at months.

I cannot believe this is happening and feel so angry that he is being taken from me, the future looks so bleak and I feel totally lost and helpless and can't stop crying.

From your experience, can you give me your opinion on treatment please? Was it worth it, or did it spoil the time the person had left?

Patrick is generally fit and well, he has pain and discomfort which is pretty much controlled with morphine, to look at him you would not believe that anything is wrong. Can you tell me what to expect as the cancer progresses, will I just wake up one morning and he will be gone?

[LisaC]

Hello I’m sorry that you are going through this right now.

My fiancé was diagnosed in the middle of November his had spread to his liver and had caused damage to his liver, due to his age (37) they wanted to start him on a very aggressive regime chemotherapy his pre chemotherapy bloods were too bad and he was unable to have the Chemotherapy, he passed away 6 days later. The drs said it was very aggressive and they could not have predicted how quick it took hold. Lewis had been unwell for sometime and was scared to get help due to covid and he probably knew it was bad and did not want to know.

Lewis was in hospital at the end, due to covid we were unable to get him to a hospice but he had the best care in there I did not feel able to care for him at home and the gaps between calls for nurses gave me anxiety so having nurses around 24/7 helped. He was placed on a syringe driver to give him his painkillers so he did not have to swallow them all, he was awake until partway through his last day and he passed peacefully in his sleep.

I hope I have not upset you with what I’ve written. This whole journey was almost 2 months. I made a tribute page to Lewis on the site and it’s raised over £800 to help research new treatments and diagnostic tests so that is helping me.

[Millie1963]

Hello Lisa, thank you for sharing your heartbreaking story, my heart goes out to you. How are you coping

[Essee11]

Hello my dad 63 was diagnosed early sept and initially said no treatment then a second consultant offered him chemo. First couple were a really struggle and he looked terrible but he’s on round 5 of 12 and is doing well. The treatment won’t cure him and is keeping him alive but I’m pleased he is doing it so we can have him for as long as possible. Consultant said Xmas initially. X

[LisaC]

Coping somehow, I’m a nurse myself and my colleagues have been really supportive to me. It was the week before Christmas so it was a very different Christmas.

The only thing that gets me through is knowing that he is not suffering anymore he would have such bad anxiety and panic attacks due to covid.

Lewis had lots of pain and also nerve pain because there is a large bundle of nerves near the pancreas they gave him some medication called pregablin that really helped. Also laxatives to help with the constipation from the morphine and creon to help with his digestion as the pancreas produces digestive enzymes to help break down the food, if he has bloating or feeling uncomfortable after food then creon can help. Make sure you are referred to your local hospice service they were invaluable to us. They are still supporting me so I can call them just for a chat and awaiting bereavement councilling.

[Borobi]

Hi Millie

Sorry to hear your bad news. It’s a terrible place to be.

My husband was diagnosed 2 years ago. He was a very fit and healthy 66 year old. His tumour was contained within the pancreas, but too close to the major blood vessels to have the op. He had 12 cycles of Folfirinox which was definitely worth it - he didn’t have much in the way of side effects and the tumour shrank quite well. Despite subsequent chemo radiotherapy and more chemo the cancer stopped responding and he died last October- 21 months after diagnosis.

He was really well until 2 months before he died, then went downhill really quickly. So I would say if your husband is well, talk to the oncologist about chemo as it will probably give you more time - and with lockdown you can hardly go off and travel the world, can you.

And you’ll know when he gets really poorly.

My very best wishes - I’ll be thinking of you.

[CJG4CJG]

It’s just awful. Awful. Cruel and inconceivable how it just takes hold. It depends on wether you feel your husband could tolerate being poorly and in hospital and the possibility it won’t work. I’d say Enjoy the time you have left together. But my experience is very different to others- yet the ultimately the same. My husband was fit and well, cardiovascularly very strong, strong mind and pain threshold. Minimal symptoms not debilitating. Went to work mon Tuesday (teaching a class of 30 junior school kids), walked 40,000 steps on the Sunday with the dog, following Sunday pain/poorly, Monday jaundice, diagnosed the Thursday and passed away the Monday (26th Oct 2020). All in a week. Got him home and cared for him here, but myself and our children 11&8 are still reeling. It’s a nasty nasty disease and doesn’t discriminate. So sorry for your hubby and yourself. Sending love.

[Millie1963]

Thank you for sharing your heart breaking stories and experiences with me. Trying to be up beat and enjoy each day whilst he is well, don't want to waste this time but at times it is so hard. Sending lots of love and hugs xx

[PCUK Nurse Lisa]

Dear Millie1963,

I am saddened to read of your dear husbands diagnosis and hear your devastation. Others have already posted some wonderful support to you here on the Forum.

I am one of the support line nurses working at the charity, so just wanted to let you know if you do have some questions or need further support, we would be very happy to chat with you over the phone too. There is no obligation at all, I just wanted to make sure you were aware of the support line service we offer.

Sending best wishes,

Lisa

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK Support Line: Freephone 0808 801 0707

Lines are open Mon/Tues/Thurs/Fri from 9am - 4pm and Wed from 10am - 6pm

[Millie1963]

Thank you Lisa, that is good to know and much appreciated

[Justamo]

Hello Millie.

You asked what you could expect as the cancer progresses. I daresay you will have read a few threads on this forum so you probably are aware of the roller coaster you're on.

Do you have a MacMillan nurse ? They are a wonderful support. Our nurses at PCUK really do know their subject and either know the answer to every question or will find it PDQ. Ask for help.

I learned fairly quickly not to put time limits on things and to take life one day at a time. Try to enjoy something with Patrick every day. Don't spoil today by projecting what might happen in a fortnight's time. That might sound a bit glib, but it helped me to cope. Try to reserve a tiny bit of time for yourself; we all need a bit of space no matter how close we are to our partners.

You will experience good days and bad days. Enjoy the good days and keep them in your heart, and on bad days ask for help. Either the helpline here, or your MacMillan nurse. This website has bucket loads of information about the illness, treatment and progression, read it when you are feeling calm and can concentrate properly.

Yes, it all seems desperately unfair, but that's how it is.

With love, Mo