Pancreatic and liver cancer

[WilsonMilson]

Diagnosed today. I can’t believe it. I thought I had gallstones. The liver tumour is already 7cm, I can’t even remember what the pancreatic one was, it’s on the head of the pancreas. They did more CT scans to see further spread but I don’t have those results yet.
I just am in a blur.
My pain has been getting really bad the last few days and I’m worried this is it. I will have a meeting probably next week to discuss the plan for treatment -if any.

I’m not ready. I’m 45. I have a son and a lovely husband. I have elderly parents.

I’ve gone into hyper organisation mode. It’s madness really, but tonight I bought birthday cards for my son, husband and mum for the next 4 years. I’ve been transferring money to different accounts to make it more accessible. I’ve emailed my son’s school, I’ve started writing to do lists.

My mum is flying in on Friday and will stay with me. I’m just so devastated and so sorry for my poor son and husband. I cannot believe this.

Sending you lots of love and positivity Pamela, hoping you are a lot more comfortable now you are home with your lovely family xx

just checking in on you Pamela, hope you are on your way home as I type this and that you get you bath. Thinking of you and your boys

I got home yesterday about 11am, but I’m incredibly ill. I can’t really walk much without terrible pain and the stairs are very difficult. Eating is extremely challenging and I feel sickened and pained all the time and am lying down most of the time. I actually feel as though I’m trapped in torture, it’s honestly purgatory. You wouldn’t let an animal suffer like this.
I feel so much worse for that hospital stay, not a single good thing came from it. I am now angry and defeated that this has taken so long, I was so much fitter on May 17th and now it’s nearly July and I’m at death’s door with still not a fucking plan. I feel so let down.
I don’t even think it matters now, I’m not fit enough for any treatment. I know that in myself. I lost so much weight in hospital and now I can barely do anything at all. I’m lying in bed with a basin and poor Kerr is in all sorts of panic and trying to feed me (I don’t want to be fed, I truly don’t want anything) and is so scared I know and just trying to help. I’m so yellow and gaunt. I hate to say this, but I don’t want to suffer like this anymore. I can’t see a way out now. I want peace. I’m glad to be home, but the me who came home wasn’t the me who left and I’m scared. I don’t think I have very long left. The whole MDT bullshit that has been going on weeks and weeks just seems to futile - finally they have all the tests and scans they need, but so much time wasted that it’s all just pointless.

I don’t want to die and leave my family, but I can’t go on like this. I just can’t. It’s too painful. I am terrified of dragging on weeks like this in increasing torment.
I’m sorry this is such an awful update, but I’m just so done. I’m more scared of continuing to exist like this than I am of dying at this point.
I love my boys and my DM and DGrandma so much, I just hate them seeing me like this. I don’t want them to remember me like this, I want them to remember me the way I was before this horror befell us all. I want Jacob to remember his mum the way I was, not this, never this awful skeletal creature with hollow eyes and a tortured soul. I hope he remembers me the way I was. I ordered photobooks of all good pics on my phone of us over the last few years. I want to be remembered that way.

Dear @WilsonMilson they will remember everything about you, not just this, you are NOT reduced to this.
I'm so sorry. Just sending all the love and wishing you relief. 💗

@WilsonMilson ((hugs from afar)) we brought my DH home to die and he held on for nearly 3 days at home. This IS NOT THE memory we have of him. Ours are all the happy times, the 'normality' stuff we never remember the horrid bit. Obv we talk about it but our over riding memories are the good things we did.

Reach out to the hospice - they are experts in this, they where the only people that managed to get my DH pain under control.

This is heartbreaking to read, I really think your pain control needs looking into urgently

Hi Pamela. I've been following your story, though I haven't commented before, and I've been keeping you in my thoughts.

My Mother suffered similarly to you (not cancer, but an aggressive liver disease with a rapid decline) and although I was with her constantly in her last weeks, and saw what the disease did to her body, that isn't the image of my Mum that's in my head. I remember the beautiful lady she was. Although I'm obviously still praying for you and hopeful that you will soon have treatment, I wanted to offer you that peace of mind, I hope that is OK.

I wish you peace of mind, to know that you are loved and those you love know what they mean to you. Sending love, and will continue to pray for you.

Don't despair Pamela. None of us would wish you to be in pain and I hope you will be able to rest. There's so much love for you from Mumsnet ❤

Pamela, I’m just so desperately sad you are in such pain and turmoil. You shouldn’t be in this pain, it should be managed by hospital, or whoever. Can Kerr contact your GP? Are community nurses calling?

I wish I could help, but I am praying in my own way for you, Kerr & Jacob. This is so unfair for you all.

Sending you love & strength. Kate x

You sound amazing. I am so sorry for your endurance. My advice is to get your husband to call your GP and demand they send a nurse or doctor in urgently within the hour and not to take no for an answer. Pain relief can be set up very quickly. Get him to ask about urgent hospice care. I wish I had done that for my Dad, but it was all too quick (and the hospital was not as honest as they should have been with us re timescales). He died in hospital.

My Mother-in-Law was at home and I sincerely mean it, having lay at her side for weeks on end - the care at home was superb and she was not in any pain at all and passed very peacefully.

My memories of both are vibrant wonderful people and the last few weeks and days did not define them. I promise you that xxx

Pamela I’m so sorry to hear of your pain. Your family will remember you for the awesome person you clearly are and you live on in them always. I do hope there can be some help to manage your pain. Focus on the precious little pieces of joy, a smile or a hand hold from those around you, focus on that and try not to worry about other things now. We’re all still here and thinking of you. 💐💐💐💐

Dear Pamela, I've been following your messages and I just wanted to send you my love and hugs.

Oh Pamela I am so sorry you have been so let down by the system and continue to be in such distressing pain, it really is unbelievable.

I second what others say and ask you to contact the hospice for help with pain management, it’s not fair for you to be suffering so much and if you can start to feel better then time with your lovely family will have so much more quality.

I am still hoping for a miracle for you (and your family) in all of this, and that a treatment is found and started for you immediately.

with much love
Sara xx ❤️

Oh Pamela, you have been so terribly let down. I am so sorry. But you are so much more than this and you always will be. You’ve touched all of us on this thread and made an impact on our lives, we’ll always remember you and your courage and bravery as will everyone else who has had the privilege to have met and loved you.

you and your family will never be far from my thoughts ❤️

I was going to come on here and suggest as others have that your DH contact your GP. They will have access to ways of getting you pain relief and they should be able to do this very quickly. He needs to stress the absolute distress you are in, you should not have to suffer like this. I'm really very sorry, pain as you are experiencing in completely all consuming and once they have it under control you should feel both mental and physical relief. I hope this happens soon xx

Pamela I'm so sorry to hear your latest update. Once again you have me in tears for the cruelty of it all and for the dignity you continue to show.

I promise you your boys will not remember you like this whatever happens. They will remember you as the vibrant, intelligent, loving and kind woman you so clearly are. Your boys have been so lucky to have you support them and mould them in the way you have until now. You have done everything you can and it was absolutely enough.

We are all rooting for you. I hope your relief comes soon however that is achieved. If you have any strength left and Kerr feels able to I would make him get you some better pain relief.

I’m so sorry to read your update Pamela, I have been cheering you on from here in Exeter. Your strength, love and intelligence shine through in your posts and I’m sure that’s what your loved ones are seeing too.
this is a truly shitty situation and there are no words to ease your pain but I am sending you prayers and love xx Daisy xx

I am very sorry to hear you are in pain and scared. I know it must be hard for you to write this update. I have no advice as such but i’ll keep thinking about you and your family. sending loads of love.

I’m so sorry. You should not be in pain, it is incredible that you were in hospital and they did not manage to control this. I agree with the other poster who mentioned the hospice. They can offer great support and are experts in keeping people pain free.

Pamela, I'm so sorry it's so very hard for you. Will they give you a plan today? Once you have information you have choices. I agree that the hospice will be able to help you. You are so evidently loved by your family.

This is heartbreaking to read Pamela. I feel you have been very badly let down by those involved in your care. You have been left to just get on with suffering without treatment or adequate pain relief and that’s completely unacceptable. I realise Kerr must be in absolute pieces but would he able to find out about an urgent hospice referral? Most hospices can provide care at the patient’s home. I would go via the GP or even phone the hospice directly and ask them what to do. I’m holding you in my heart.

Hi Pamela
So sorry to hear your latest update. We had someone in our family who sadly passed away from pancreatic cancer. It's awful.

I don't know why, but the time from diagnosis until there was a treatment/management in place was a complete fiasco. I fear this is to do with how strained the NHS is.
He was passed around hospitals and so on and it was hell.

However, once they gor a management plan in place (treatment was not possible at that stage) things did get better for a few months and he was able to enjoy time with family and friends and complete some projects.

Your husband should insist on the GP coming out as an emergency. Community nurses need to be coming too because you need proper pain management immediatel.

Happier times in the last year. I wanted to post some pictures. Me, Kerr, Jacob, my mum and grandma. This is how I want to be remembered.

Keep fighting, hopefully this is a blip and once your stent is in you'll feel so much better. You are a beautiful family x

Lovely photos of you all. You write beautifully. Sending love ❤️