Pancreatic Stage 4

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Hello everyone,

My name is Lisa, and I am 54 years old,living in Wiltshire.   

I was diagnosed formally on Christmas Eve.  On the 2nd January, my husband (Chris) and I were given the news inoperable, yet chemotherapy was offered to give me a year.  My teaching career suddenly came to an abrupt end in a 30 second statement.

My biggest fear is dying, and each day, it is time running out.  I am dealing with the pain. The head is just playing terrible tricks on me.  I just feel numb, empty and lost.  I know everyone tells you to be positive and stay strong, believe me I am trying but my heart just feels ripped apart.

Has anyone any advice on how to manage my thoughts and emotions, just so I can come across calm again or at least not a pain to those around me.  I hate to think I'm a burden to my husband and children.

Thank you 

  • Hello Lisa

    As you've had no response to your message I thought I'd write and confirm that your message is viewed by many, all feeling your pain and natural fears. 

    I'm so sorry to hear your awful heart breaking news. As my brother had the diagnosis I was with him on his journey. 

    Have you googled "Howard Katz Pancreatic Cancer survivor" who believed 'millions have beaten the odds' and so he set his attitude towards his challenges. He was a young 51 when he heard his news from his Hospital.

    His mother's quote was " if you think you can't, you won't." From that his mother changed his whole attitude and he took on a complete new approach to his news. 

    His story is worth a read and remember every day new medicines arrive to fight all cancers, or hold them back. I hope you find your strength to read up on all info you can here on this site, there is such a good support here. 

  • Thank you so much for replying.  I haven't heard of the book, but I will make it a priority to buy it.

    Just the fact you replied as given me hope.  I just feel so frightened, alone and a burden to others.

    Thank you from the bottom of my heart for your time, empathy and understanding.  You have me a ray of light.

    Best wishes 

    Lisa

  • It's found on Google Lisa. All his story. His attitude and approach to his Stage v PC  is admirable. 

    My bro and I never looked at life as 'glass half empty' ...always... half full. 

  • Hi Lisa, 

    I’m also a Lisa, 52,a teacher and diagnosed with Stage 4 inoperable pancreatic cancer. I was also told I had 12 months in April. I am very sorry to hear of your diagnosis. It’s devastating news and your feelings are perfectly normal. I have just completed 6 months (2 cycles) of chemo every 2 weeks. I wanted to say that I recently had my scans which showed tumour shrinkage and very low tumour markers. The chemo has really worked so far. They tell me now that 12 months was a median estimate and I’m now at the upper end of that whatever that means but the Chemo has bought me more time. I wouldn’t have believed that back in April when I was given the news. I have also the possibility of some new drugs that might help later down the line. There is hope!  As Skippy said, there are new things developing all the time.

    the fear of death and being a burden I found are always there but I have managed to distract myself at times with art or friends popping in for coffee etc on my good days. These moments have become more precious and I live in the moment when I can. I am not really a spiritual or religious person so have sort comfort from my family and friends who have been remarkable and kind. They won’t see you as a burden as they love you!  It’s very hard not to feel that as you will need to rely on others for emotional and physical support. It’s hard to lose independence and the routines you had in your life. But try to think of it as temporary. It’s the treatment that is debilitating more than the disease I found.

    I have tried to see it as an opportunity now to do some things I couldn’t before. I was lucky enough to retire due to ill health via the TPS ( let Me know if you want any advice on this). I hope you have that option too as it helps with the financial impact. Believe me though I was not ready to retire and found the loss of that part of my identity hard but I’m now trying to forge new directions and keeping my focus more short term. I focus on the day/ next couple of weeks and try to have little things to distract  me. I realised that a bucket list was useless as it added pressure and was unachievable. instead I started to try to appreciate slowing down and being with my family more . I keep things as simple as possible now.  I also did things to ease the burden on others like get a cleaner, online food shops etc   

    Telling my son who was just about to start his GCSES was the hardest part but we have found that being open and honest has helped us all. You do have to deal with it bit by bit but don’t try to hide your feelings all the time. 
    you don’t have to be brave and strong all the time . It’s natural to feel overwhelmed and I have been very angry at times. I have been an emotional rollercoaster but I try to roll with it.  If your hospital has a Maggies center then they are great for offering activities , counselling and a community of support for you and your family.  I think they have a website with support on offer too  

    everyones experience will be different and there is no right way to be through this awful situation but I think you will find a sort of routine and the initial fears will be less prominent.  When you start to get clearer info on your treatment path and what it looks like it helps with managing your expectations too .  If you are able to talk open ly with your husband then I found it helpful to get everything out in the open and navigate it as a team one step at a time . 

    I wish you all the best and have my fingers crossed for you. You are not alone and there is hope. 

    Lisa  

  • Hi Lisa,

    Your email has come to me just at the right time.  Today has been horrendous.  When I say emotions are all over the place it would be an understatement!

    Your email has brought me hope and perspective.  I would really like it if you gave me permission to stay in touch with you.  I am going to write my response to you, you have given me a task which I am so thankful for.

    Building a friendship or confidante  to me right now is a gift (heaven sent) ironically.

    You sound brave, ccourageous yet also a realist at the same time.  

    I hope you will know just how grateful I am today, your email is the one thing to give me hope and more importantly smile with joy for all you've accomplished.  Your son has a strong mum, he in return has given you love and determination to fight on and be thankful.

    Thank you for telling me I'm not alone.

    Speak soon Lisa if OK?  It must be in the name and profession...

    Lisa

  • Hi Lisa, 

    I’d love to stay in touch. I have sent you a friend request I think through this forum. Then I can privately message you and give you my email address if you’d like. More than happy to stay in touch. 

  • Thank you so much for replying skippy.  I am trying my best to stay on a even keel.  Today is a dark day.  Yesterday was a bit brighter.  Take each day..     Thank you 

  • Hi Lisa,

    I am so sorry you have this diagnosis, it’s a terrible disease.My husband has been fighting it for 4 years, we think that we’ve won a battle, and then it comes back. It’s an emotional roller coaster, not just for the patient, but also for the family.You will all have lots of emotions. Personally, I feel like we have been robbed.Robbed of the time to enjoy future retirement together, robbed of helping raise the (future) grandchildren together, our son got engaged on 30/12/24.

    But although it may not be curable, it’s treatable.I say to my husband, as long as the medics are able to treat you, there’s hope.Currently his much needed chemotherapy is on hold as he’s physically too weak from infections and bouts of sepsis and other complications.

    Do you have a local cancer charity, Maggie’s was mentioned in another post.We both go for counselling to a local charity here in Surrey once a week.Talking to someone independent once a week really helps us.

    If you feel well enough and can manage it, try to take little trips/ outings or do something special for yourselves in the breaks between chemotherapy.Make memories, because when the treatment or reaction to it is burdensome, those times of enjoyment can keep you and your family going emotionally. Also… give yourself a break, don’t put yourself under pressure, let your family take the weight.Additionally, and this is something I have done from the start of the journey, always have someone accompany you to medical appointments to take notes. My husband doesn’t always remember what has been said/ proposed. Each year I buy an A4 diary ( page per day) so I note, which Dr/ consultant said what, when and where.This isn’t about a schedule of appointments, rather I document everything.It has proven very useful.

    I wish you well, we all have to keep fighting.New developments/studies are happening.In the USA immunotherapy is used to treat PC, but not in the U.K.I was told that this is because there isn’t enough empirical evidence of its effectiveness.However, there  are 2 global trials running at the moment.So you might want to check the Pancreatic Cancer U.K. website for information.

    Best wishes

  • Hi

    I am so sorry for the late reply, I had my first chemotherapy session Friday and it has really knocked it out if me.

    Your advice is very helpful.  I think you are so right taking someone with you always to appointments.  Your husband and I are very lucky to have loving spouses.

    I do feel robbed of seeing our grandchildren grow up.  I feel so much empathy for you both over your sons engagement.

    I am 54 and was looking forward like you both to retirement.   This is nitcwgat I called retirement.

    Please do write again.

    Lisa