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.

I work for Macmillan (non medical) and am having a hard time keeping it together on the train reading through your honesty and bravery. Delays are shit there's no other word.

Never give up. You never know with cancer, they do not know it all and they're finally throwing everything they can at it. Turnarounds happen. You are loved.

Dear Pamela, you are so brave both regarding your illness and in sharing your story with us.
Please don't give up just yet. I have had 2 different stage 3 cancers (for those who don't know, Stage 4 is terminal) one at age 38, the other at 48. I am now 72 and pretty fit for this age. The surgery and treatment in both cases was gruelling but thank goodness, it worked. The first cancer I had to wait 3 months for the operation and it was hell knowing that at any moment it could develop into Stage 4. I was single and childless and a nurse informed me that mothers were prioritised. I understood that and couldn't really argue against it but it was still hard.
Like you, I had a very supportive husband. Every day he made me an organic fruit salad. On the days I couldn't eat I had wheat grass juice. I took CoQ10 and Pycnogenol as an American M.D. told me that it helped the chemo. to penetrate the cells. My Surgeon and Oncologist (for the latter cancer) were very open-minded for the time and recommended meditation, walks by the sea and watching comedies to lift my mood.
I very much hope you will be given a workable plan on Tuesday. Meanwhile, I have added you to prayer chains i n UK, USA, France and Columbia. Good luck. X

Being in so much pain is utterly exhausting, I really hope you manage to snatch a little sleep while your husband is dealing with the doctors.

Once you have good pain relief in place you may well find you get your appetite and your strength back.

I had a dear friend who was diagnosed with terminal cancer at 28. Our local hospital weren't very helpful and he was ready to throw in the towel. But the hospice were brilliant at pain management and their wonderful care and support meant he had a few unexpectedly good extra months of enjoying time with friends and family.

I really hope the doctors prioritise your pain management as a matter of urgency, then you can make plans for your treatment. Thinking of you and sending hugs.

Have only just seen your posts and I am so sorry what you are going through. What a lovely family you have. Glad you got to go home and be surrounded by familiarity and love. I too am in awe of your spirit. Sending hugs to you and your family x

Thank you for those photos Pamela, you have a beautiful family. I’m horrified that you have been left in pain like this. You mentioned a critical care nurse you had contact with? I wonder if they could help with pain/sickness or at least point you in the right direction?

I hope you feel the love reaching for you from all over the world. You have moved me more than I can express in words. Caroline x

❤️ from France, Pamela.

I am so sorry to hear your news. Good idea to be organised (just in case). It was a real comfort to my mum that Dad had organised everything. He died of a heart attack. it was very sudden so he must have done it some time ago!

I'm so very sorry to read your updates. It's completely unfair. I have no words, other than to say I am praying for you and sending you all my love. ❤️
Oh, and what a beautiful family you are. You ate stunning Pamela 💕

Do you have hormone involvement from the pancreatic one? You’ll probably be sent to a neuroendocrine dr regarding that

my friend had exactly that cancer and the stent made her feel so much better - if that gives you a little bit of hope

Hoping Tuesday brings some positive news on a way to move forwards. Thinking of you and your lovely family.

Hi Pamela - I posted on your thread when you first made a thread. Just wanted to add to your feelings of frustration, bil was diagnosed in a Spanish speaking country but the doctors here refused to let us translate the reports or look at the scans.

So we had to start from scratch while he got worse and worse, loads of other frankly appalling time wasting from the teams involved.

Of course loads of other staff - usually nurses - going above and beyond.

I did a lot of advocating for him as my sister wanted to make sure their business wasn’t going to crash and she could support the kids.

Left me wondering how people manage when they don’t have family or friends.

anyway it’s been around 5 years now since he passed. We miss him and make sure his name is spoken often.
The eldest has passed his degree and been travelling, middle is doing a levels, third is doing GCSEs.
You sound like you are doing all you can to leave a lasting legacy and memories for your family and I really wish you all the very best.

@WilsonMilson , I'm so sorry you are going through such an awful awful thing. And your family too, it's heartbreaking.

You've very generously allowed us to see your deepest fears and darkest thoughts and I'm glad that you've found support here. I wonder with such, very understandly, emotional and personal posts if it's wise to share photos and the names of your loved ones? Your humanity and your "Pamela-ness" shine through in your writing even without the personally identifiable info.

I'm sure, should your son stumble across this thread one day, he wouldn't read it as it would be too painful for him. But others in his, or your husband's life, might see it and people can be so thoughtless and tactless. We're also all aware of the nastiness of trolls and of the insensitivity of the media at times. You can tell me to shush and that you've made this choice consciously and deliberately. But I just wanted to check you'd considered it fully. If you do decide to retract the photos or names, please don't delete the entire thread. So many posters are here for you and it is incredibly important for you to have an outlet for your feelings.

I hope your pain is better controlled today.

Dear Pamela. I’ve only just come across your post. I am so sorry to hear about your diagnosis

I had to have a stent put in bile duct due a blockage. In my case it wasn’t cancer, just a large gallstone which had got stuck. The relief from my symptoms was almost instantaneous. They did it through an endoscope and I had a sedative. It felt like it was over with in 5 minutes.

My DH was diagnosed with an aggressive form of bladder cancer over 7 years ago. He responded fantastically well to his chemotherapy and radiotherapy and is in remission.

My thoughts are with you are your family. I hope you have a positive outcome xxx

Beautiful photos Pamela. Thank you for sharing. This is how I will think of you.

X

Sending love and strength. Look up Andreas AMMF army on Facebook - may be a great source of information for you. She had your diagnosis a few years ago.

Reading this all has broken my heart. I just wanted to say please stay strong & keep the faith.
My dad was diagnosed with Stage 4 Non Hodgkins Lymphoma when I was 19 (10 years ago) my life fell apart, we are an extremely close family and I couldn’t imagine my life without dad in it so I can completely sympathise & relate with what your son is going through.
He was extremely sick and went through many rounds of chemotherapy and was part of a trial for a new chemo, I will never forget when he was admitted to hospital on Christmas Day as he had sepsis. The chemotherapy did help although as a blood cancer he will never be in remission, he has bloods every 3 months under a consultant and his health has declined since having covid but he is still with us.
I guess I wanted to tell you that medicine now is wonderful and there may be something out there that can shrink it and give you more time with your family, I really hope this is the case.
You will be in my thoughts and I really hope to read some positive news from you soon ❤️

Good afternoon Pamela

I'm Toasting you from the rooftop bar at John Lewis in Oxford Street (who even knew that existed?). I can just imagine your glamorous self reclining on a sofa here (and you really are v glam !!) Aperol in hand. Something to aim for (maybe in NI?) once your stent is in and pain back under control.

It may seem a million miles away but anyone who followed Dame Deborah last year will know that incredible, unimaginable highs and terrible, terrible lows are part of the (fucking) cancer.

I'm hoping that the hospice can help with pain to get you through to the stent if that's an option.

In the meanwhile let the countless healing and good vibes from across the world deep into your body to give you power and strength and some relief too

Hugs, as ever x

Pamela, I am one of the hundreds of people who have been following your thread and hoping for a miracle. You write so clearly and well that it feels you could be any one of us. I can't find the words to say how sorry I am, it's been painful to read about your endless waiting for treatment and inadequate pain relief, may that be sorted soon for the love of God. There is something so special about a happy family of three, you in those happy beautiful photos are how you will be remembered. Feeling as ill as you do makes it hard to imagine ever being well again but there are stories of hope on this thread and I pray that something can still be done. Sending fortitude and love xx

I've only just seen your thread but wanted to say thank you for sharing your journey with us, and the photographs of your beautiful family. You are so much stronger than you could ever know. Sending so much love to you and your family and hoping with all my heart that you get some better news soon. 💐

Hi,

I just wanted to say thank you for sharing your story and being so honest about the struggles you are facing. Being an avid Mumsnet consumer, and someone who researches and works with people having cancer treatment I started following your thread right from the beginning. You are so articulate and write so beautifully. Little did I know my mother would be diagnosed with pancreatic and liver cancer within the last month. She is not as young as you - mid 60s but was still working full time and living life to the full - but it is still such a shock, and the toll this cancer is taking on her body and spirit is hard.

You have a beautiful family and I think of you all every day. I am so sorry you have this horrible beast to contend with and I wish I could take it away from both you and my mum ❤️

Hi Pamela and family, Siobhan here from Dublin. All is not lost love. There are treatments, surgery and so on. The stent when fitted will bring relief and may build you up for chemo. Please God there is something out there for you.

In the meantime, and I don't mean to suggest that NI treatment options are inferior, but you could consider getting a second opinion from the world renowned hepatobiliary specialist centre in St. Vincent's hospital in Dublin.

Thoughts, prayers and hugs as always.

First I’ve read your thread. Probably the most honest and raw thread I’ve seen in a long time. Where you have breath in your body and love from others you have hope. You have a beautiful family to live for, please try dig deep. Keep going, there are lots thinking of you.

I am very rarely moved to write on a thread, but you have truly touched my heart. You are a brave, beautiful lady Pamela. Your pictures show such joy.

Your lovely son, husband and your family WILL BE OK. They will. You can comfort yourself that they will be able to endure this because of your obvious, deep love for them and because of all the happiness that you have brought to their lives.

Your love, your life together, your 'family' has baked that strength into them - all the happy times full of love that you have had as a family is what will keep you all strong. Feel blessed for those times and know that none of that can EVER be taken away, no matter what the future holds. Your shared history and memories will be a comfort and a strength to them forever.

Love, courage and prayers being sent from London