Hello from a new member

Hello

The lack of info is so difficult, and this seems to go on for quite a period sometimes.

Other than a scan- which I guess he has had to identify this- what other investigations or appts has he had thus far?

Stage 4, as you probably know, has sadly, limited treatment options. Its very early stages of 1, maybe 2, and without other compromises that may be eligible for surgery- but I think the statistics for this are pretty small.

If he is in relatively good health otherwise, they may well suggest some chemo- perhaps as a palliative option- to prolong life and to make any symptoms easier to control. Though of course, you need to weigh up the side effects this may potentially bring, over coping day to day.

Some people can cope quite well, others not so much and of course the response to treatment is variable.

They will have a discussion at the hospital, called a multidisciplinary meeting, these are usually once a week, to see the best course of action and then will be in touch to talk this through. Have they arranged another appt, over the phone or in person at all?

You will find that the hospital he is under, will likely have a cancer care line you can call, for some general advice- though usually they need permission to discuss anything that is around your husbands specific case. if he is not willing for you to call them or give permission, this can be difficult. The nurses at PCUK are a mine of information and you may find it useful to talk to them. 0808 801 0707 is the Freefone number.

I'm sorry you find yourself in this situation- it is tough emotionally and mentally, takes time to absorb and gaining information and way forward can really drag on which naturally makes you worry about growth and spread and the implications of that.

Please give the nurses at PCUK a call, or an email if its easier, they are very helpful and the info they can give is more geared for this type of cancer.

Try to be a 'normal' as poss for him- which I know is a big ask, esp when waiting for news and if he's feeling under the weather- but he sounds as though he needs things on an even keel, to maintain his control and composure.

Here if you need a chat, or to update us when you know more, I'm in a similar situation with my Dad.

Good luck xx

Thank you for your reply, I just feel so helpless, I’m sorry you are going through this with your dad too. 
my husband has had a CT scan and liver biopsy which diagnosed pancreatic cancer spread to liver. He attended a consultant app on his own  (due to Covid) and was told his diagnosis, at that time he was told that he was fit and healthy for chemo, but since confirmation of his diagnosis his health has deteriorated, we have phoned a couple of times, and have been told he will hear from them in 10 working days., the waiting is unbearable. 
I try to remain normal, around him, but it’s difficult as it isn’t a normal situation, he can’t do things he used to do due to pain and fatigue, and has to go upstairs when I cook my meals and eat, as he feels nauseous with the smell. 
I have read things web sites, trying to stick to NHS and UK sites, and it seems like he can only be made more comfortable, and it’s just a matter of how long. It helps just to message other people in similar situation, as this is a totally unknown territory for me. 
I wish you all the very best with your dad, sending you love and hugs ️

Hello

Onelove3 has given you very good advice and background so I won't say it again.

I would add that it is very difficult when someone doesn't want  a partner or relative to 'interfere' but people cope in the best way they can so it is good to 'go with the flow'.

Squeaky

Thank you, we too are playing the horrible waiting game, my Dad finds out his latest scan results at the end of the month- its hard to think straight until we know what's going on!

Have you managed to have chat with the nurses at Pancreatic Cancer UK?

My Dad is so similar to your hubby, with feeling as though caring and worrying is 'interfering'!

My mum and I aren't allowed to call the oncology team to find out more, or speak too much about it with him...I appreciate this is mainly due to fear and trying to carry on as normal...but the fact is our lives have been turned upside down and its impossible to not worry, wonder and, the need to plan for the future. This is just being practical and knowing what to expect, gosh its hard as well as very frustrating.

Dads situation is that he has had a recurrence, in his lymph nodes and a small spot on his lung. So far, he is doing quite well but we are aware this won't always be the case.

Do you know any more and how is hubby doing?

Thinking of you x

Hi, 

Read your post and resonated so much. How is your husband doing?

My husband got an official diagnosis of inoperable stage 4 pancreatic cancer with liver secondaries on the 26th of January. He was due to start his chemo on 3rd March, but had a stroke the night before. He is exhausted and getting him fed is a nightmare. Basically eating cereal for breakfast and then Ensure drinks with protein powder the rest of the day. 

We have an appointment with his oncologist on Tuesday to review his treatment. They assured me the chemo would just be on hold and they have lots of tricks  up their sleeve, but I am terrified that they won’t be able to go ahead and I will lose him. He is 61. 

Hello Coach61

thank you for your message. I hope you get the treatment you need for your husband, and push push push for it to be quick. You really do need treatment quickly. Don’t wait a minute longer! 

it is with a totally shattered heart that I write this, my wonderful husband lost his battle, and passed away in February, just six weeks after diagnosis, I am heart broken. 
He didn’t get any chemotherapy, didn’t even see an oncologist, as his deterioration was so rapid. It was horrid to see him suffering, in so much pain, and we lost a little bit more of him each day. He spent one night in the hospice, and passed away the next day. I hadn’t got used to him being ill and now he is gone! I can’t believe how quick it was. He was 65, I took early retirement so we could spend our retirement together, he was still working part time and planned to fully retire this month. It is so sad, 

Oh I am so sorry to hear this! I hope you have support and love around you.  

My husband is angry that so much time has passed since he went to the doctor and no treatment yet. He was told he didn’t have cancer before Christmas. Then told he had cancer before New Year and then told again that he only had Pancreatitis in early January. Luckily he was kept on the 6 week cancer pathway and an MRI scheduled to get a better look. 10 days later they then said it was inoperable with secondaries in the liver. 

He then had a DVT a week before seeing the oncologist. But the oncologist was very positive. The liver secondaries were tiny. The plan was to go in with weekly chemo, mid strength for three weeks and a week off. 10 days later, the night before the first treatment he had a stroke. 

That was just over two weeks ago. He is able to walk and talk, but struggles to get some words out and his memory is a bit hit and miss. He also  has some peripheral vision problems. 

I’m signed off from work as it has almost broken me. There are huge financial implications so also looking to get a house sold, down size, sort out our daughter going for her year abroad at Uni. So much to cope with and organise. My sister and her husband have been fantastic support. 

I am preparing myself for the worst so anything else will be a bonus. 

Hugs across the ether.

I'm so sorry to hear this, sending virtual hugs to you. PC is a bleep of a cancer. 

It can be very rapid and take everyone by surprise. Sending you lots of love xx

Thank you. X

I am heart broken, 24 years we had together, and it hurts so much. I do have family and friends who are very supportive, but I still ache for my husband.