my wife was diagnosed with stage four pancreatic cancer about three months ago

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Hi everyone, my Wife, whom I married only four weeks ago after being together seventeen years, was diagnosed with stage four pancreatic cancer about three months ago.  She went to the Doctor's with what she thought were gallstones.After having various tests she eventually had an mri scan which showed a mass on her pancreas which turned out to be cancerous.  Eight weeks later just before commencing chemotherapy she had a ct scan which showed that the cancer had spread to her liver, which wasn't a surprise after eight weeks, so the cancer was now stage four, incurable.  She opted for the strong chemotherapy which made her extremely ill and in hospital for two weeks, which put her treatment back. She's is now on the less effective chemotherapy which she seems to be tolerating.  After a lot of thought we have decided to take a positive stance and are looking at it from the point of view of that we are living with stage four cancer and not dying from it, although ultimately that will happen. We're going to embrace each day at a time.  I'm having feelings of anger at the moment, number one, why treatment wasn't started earlier, number two that no one fully explained how chemo could affect your life, and number three, the text book responses you get from Nurses and Oncologists you get when you ask questions.  In fact we dread going to see the Oncologist because it's always gloom an doom, they look at the medical condition and not the person. Being a same sex couple as well I have felt that we have not been taken seriously.  I was also wondering why a simple test or screening programme as not been developed so pancreatic cancer could be detected earlier and not when it's too late to cure.  Sorry for the rant, I am a Nurse so tend to be more of a critical thinker.  It would be fantastic to hear from people in a similar  situation.  

  • Hi Shazbaz,

    It’s Megan here from Macmillan’s Online Community team. I saw your post and wanted to offer some support whilst you are waiting for other group members to reply.

    I am so sorry to hear about your wife’s cancer and what you have both been through. It’s important that you have support around you, so I'm glad you have found our Online Community. It can be comforting to speak to others with similar experiences and access peer support when you need it.

    Alongside posting in the pancreatic cancer forum, there’s also the Family and friends forum and the Carer’s only forum that may also be useful groups for you to join. Here you can connect with others who are also supporting a loved one living with cancer.

    It can take time to process a loved one’s incurable diagnosis, and it’s natural to feel a range of emotions like anger and anticipatory grief. By joining and posting in our Supporting someone with incurable cancer forum, it may help you to feel supported by connecting with people who are in a similar situation.

    All of our forums are safe and supportive spaces for you to talk to others, ask questions, and share how you are feeling. Another way of finding support here on the Online Community is by reading our Community news blogs. In this part of the site, the Online Community team shares guest blogs, site updates, and support information.

    I’ll link you to the ‘supporting someone with cancer’ section so you can take a look at some of the blogs.  

    If you have questions about the side effects of chemotherapy and how to manage these, you may wish to chat with our Nurses here at Macmillan. They can provide trusted information and reassurance, alongside talking through your concerns for as long as you need.

    To get in touch with the Nurses, you can post a question in our Ask an expert section on the Community or contact the Macmillan Support Line. The Support Line is open from 8am to 8pm every day and to get in touch, please call 0808 808 00 00. There’s also the option to send an email or use live webchat during the opening hours.

    When you get in touch with the Support Line there will be options to speak to the Information Nurse Specialists and Support Advisers alongside the Money and Work teams. If you need a listening ear, then the teams are here for this too as sometimes it can be helpful to talk to someone who is there to listen.

    I do hope the above information can be helpful but if you have any questions about the above, or ever need any additional support, please don’t hesitate to get back in touch. You can email community@macmillan.org.uk or send a private message to the Moderator account.

    Best wishes, 

    Megan
    Macmillan's Online Community team

  • Hi Shazbaz, I've only just joined and I see your post was 4 months ago, but if you are still around here just wanted to say Hi, I'm someone who definitely had A LOT in common with you! My partner has metastatic pancreatic cancer, diagnosed in September. We are a same sex couple (not married). She is 59. Had one dose of chemo start of december then ended up in hospital for over a week. Due to see oncologist again tomorrow with a hope that chemo could recommence on Friday. Be happy to chat, with someone else who's been in same situation ... its tough!!

  • Hiya there Harmony 60, I've ,just seen your post.  Unfortunately my Wife Sarah passed away five weeks ago after putting up a tremendous fight against this God awful cancer. The less effective form of chemotherapy didn't suit her and she landed up in hospital again on iv antibiotics, which wasted another week of her life. I question whether or not the chemotherapy was worth it in my Sarah's case, it just seemed to make her overall health so much worse, I'm not sure if it ever suits anyone, I just felt they offered it her so that they were seen to offer something knowing that it would fail and ultimately the cancer was going to kill her anyway. In the end she came to the decision to stop it after which she had two reasonably good months, she wanted quality of life not quantity. The chemotherapy was giving her chronic sickness and loose stools and she couldn't eat anything at all.. She rapidly declined within a week and landed up in hospital again, she was put on end of life care and came home. I looked after her until she peacefully passed away and made sure she was comfortable and pain free because that was all I could do for her, she had a lot of love bless her, albeit grumpy with me at times. She had a Distinct Cremation Funeral and I'm arranging a celebration of life Disco for her as she requested.  She was hoping to make Christmas but it simply wasn't to be, she definitely won the battle but lost the war and lasted a good six months. I was dreading Christmas and New Year but I haven't been too bad, the emotion of it all hits you in waves more than anything, grief is such a weird thing it seems to amplify all your emotions, I can only describe it has being happy and then at the drop of a hat sad. I'm trying to put my life together now and have joined a couple of online gay ladies groups including East Midlands Lesbian Social Group so that I can make new friends and join their events. Myself and Sarah generally kept ourselves to ourselves and didn't have any gay friends so it will be nice to meet like minded people because it can be isolating otherwise. Anyway I wish you both the very best, I'm happy to chat with you Guys anytime. xx

  • Thanks for replying when probably the last thing you want is to be reminded of all this. So sorry for your loss. We've had a rather bleak day ... appointment with oncologist this afternoon when the first thing he commented was that 'A' was now jaundiced. (Something I'd vaguely suspected couple of days ago but hadn't realised the implications.) AS this is unlikely to be due to a blocked duct (as not that part of pancreas was affected ... an urgent ultrasound will confirm this) but due to liver struggling to cope, it means chemo is no longer an option. Chemo was what she was hoping for, to provide some relief from the pain and keep her alive for longer. So now the outlook looks rather bleak sooner than we'd expected. She's now got morphine to help with the pain so at least should be more comfortable. But lots to come to terms with, as I'm sure you'll understand. She has a son age 26 who is estranged from his dad, so she's his only relative in this country ( he has an aunt and grandmother in Romania where she comes from) ... this is going to be even harder for him, especially as they are very close. She says she's now going to start thinking about putting her affairs in order ... something that's been worrying me for a while to be honest, as (for example) all the household bills are in her name at present (eek!) 

  • We both found the whole experience very surreal to be honest, your natural extinct as a human being is to go into survival mode while everyone around you is giving pitying glances and treating you like one of the walking dead.  All I can say is that Sarah got through her cancer diagnosis by not thinking about it, in her words, and carrying on as normally as she could.  It's my name on all the bills so that wasn't an issue for us, Your best both treating it as a journey and reacting to things as they evolve.  Having said this you also have to think in a practical way as regards financial issues, we also sorted her funeral out which was one of the hardest things to do but meant that when the time came we didn't have to think about it. She had a Distinct cremation funeral and I've organised a celebration of life 80s Disco on the 20/1. My heart goes out to you both, it's very much a dark road all you can do is live a day at a time and enjoy every precious moment.