My Mum, My World, Stage 4 PC

[Julie1982]

Nearly 3 weeks ago we received the devastating news that my beautiful mum has inoperative PC. Our world is shattered, I started googling lots then I came across this site, I though it may be helpful to share how I'm feeling and mums storey.

Mum is 58, was fit and healthy and never ill, she experienced a couple of bouts of upset stomach and decided to go to the dr as it was very unusual for her. They run full bloods and said that her red blood cells were very high, they did a re run and they came back the same.

That afternoon mum had a call from the hospital asking her to go in for a Ultra sound scan the next day. Mum had started to show signs of jaundice, in particular on her eyes, I felt sick, something was telling me that something serious was wrong!

The results of the Ultra sound showed that there was a blockage, but it was apparently not clear so they wanted to do a CT scan.

Every day up to the CT scan I could feel the anxiety and mums jaundice was getting progressively worse.

We had a call from the hospital to go in and discuss the results of the scan, that morning mums anxiety was sky high but we were in it together.

Mum asked me not to go in the room with her and dad, as she didn't know what she was going to hear, I respected her wish. My emotions were high, mum and dad must have been in the room about 25 minutes and the nurse came out to get me. I walked in the room and my parents looked blank, I sat on the bed and the nurse next to me, the consultant started talking to me 'now you know we have been doing some tests on your mum, well we have found 2 things firstly a blockage in her bile duct which is causing the jaundice, we will arrange for a stent to be fitted to help clear this. There is no easy way of saying this but we also found a Tumour in your mums pancreas' I looked at mum and then the consultant and said can you operate? He said no it's terminal. I broke down, my dad was crying and mum was just numb. How just how could this be happening.

A few days later mum had the stent fitted, it was quite a stressful procedure, as you are awake and she kept gagging as the tube went down, mum was also very dehydrated so the struggled to insert the cannula. After the stent was inserted mums jaundice got worse, but I put this down to the build up of bile being released.

Mum continues to really struggles with eating little and often. She is taking creon, but just has no appetite, she's loosing weight and refuses to try the drinks from the dietician as really doesn't like milk!

Anyway after a discussion over the weekend she has agreed to call the cancer nurse today to discuss trying some tablets to help stimulate the appetite.

Mum has a biopsy scheduled for the 5th August and then we see oncology on the 15th.

I am currently not working, as want to be around to support my parents, but also mentally I'm just not strong enough, my Job is very demanding and requires a high level of resilience which I just don't haven't the moment. I'm seriously thinking about taking a career break, and focussing on being there for my family and maybe getting a part time job in a supermarket to earn a few pennies and keep me meeting people.

I'm only 34, single and live on my own! I had so many dreams that my mum was to be part of. I had recently been looking at having a child on my own and mum was going to be the main career to allow me to continue working PT, this has now all been put on hold as without mum I won't cope! The thought that she will never meet my children, or a potential husband to be is devastating.

I'm off to visit the hospice today with my sister and dad, mum has refused to speak to anyone at the moment which is fine, but we want to know what support is out there and what we can do for mum.

Sorry for the long post.... I'm sure there are people on this forum that can relate to what I'm going through and my feelings, if you have any advice it is warmly appreciated.

Taking each day in my stride.

Love Julie xxx

[Dandygal76]

Hi Julie, I am so sorry you are all going through this. It feels so helpless at first but you are not powerless. I have to go to work now but will post later but please read my thread on my dad if you get a chance - it is a bit topsy turvey though I am afraid but there are options to fight back. There are also fruit based calorie drinks...

Ensure Plus Juce

Fortijuce

Clinutren Fruit

Resource Fruit

Provide Xtr

They do not have to be milk based and your GP should be able to help. It is all such a shock, things will hopefully settle.

My suggestion now would be to look at some trials before starting NHS chemo if you can. It may not be the option for your mum but once she starts NHS chemo (if that is an option you have) the trial options will become more limited.

Also, phone PCUK and discuss trials etc. The nurses will really help you.

Much love. x

[Dandygal76]

Nearly 3% still make it 5 years (and that is without the newest data). You mum is young and the median age for this is 72. The odds, whilst bad, are on your side until you are told otherwise. Never give up unless you have to give up because the beast takes over or because that is your mums choice....

http://www.targetedonc.com/publications/evolving-paradigms/2016/pancreatic-cancer/evolving-paradigms-in-pancreatic-cancer

Google stage 4 pancreatic cancer success stories. It may not make a difference but that regained hope in my family made this whole journey more tolerable and less desperate.

Some people have to be the lucky ones and why not your mum and my dad. x

[WifeampMum]

Hi Julie

Welcome to the forum but I'm sorry that you find yourself here and in such circumstances. You will get plenty of advice here and everyone will be rooting for your Mum. I hope you find it a big help, though nothing can take away the pain of having a loved one diagnosed with PC.

I have no direct experience to share as my husband isn't stage 4, but I agree with Dandygal that it's too soon to give up hope and that there are most likely treatment options. You'll know much more after the biopsy and meeting with the oncologist. In the meantime I also think it's a good idea to read PC Stage 4 survivor stories - there are plenty on the Internet.

I wish you and your Mum the very best

W&M x

[PCUK Nurse Chris]

Hi Julie,

As others have already said welcome to the forum and i am sorry you find yourself in this situation. I hope being on this forum leads you to getting the support and help you need.

I would also like to take this opportunity to introduce our service. This is a free service that is available from 10am - 4pm, Monday - Friday (apart from Public holidays). It is run by a team of specialist nurses, with experience in varying aspects of pancreatic cancer. There is no limit to the amount of times you can contact us, and we have no time limit to our calls, so are happy to spend time in discussions. We have different experience in looking after patients suffering from pancreatic cancer, and of course, their families and loved ones. Feel free to contact us via phone (freecall 0808 801 0707) or email (support@pancreaticcancer.org.uk)- whichever is more convenient to you and we will respond to you as soon as possible.

If you don't mind I will also email you personally to answer some of the queries you have mentioned in your post.

Kindest regards

Chris

Pancreatic Cancer Nurse Specialist

Support team

Pancreatic Cancer UK

[Proud Wife]

Hello Julie

I am so very sorry to hear of your mum's diagnosis. 58 is no age at all to have been dealt so a cruel blow. I'm struggling today and my post will be uncharacteristically brief but didn't want to ignore your post.

I am so pleased you have shared your story and will be able to benefit from the support that you will receive on here, both from our brilliant specialist nurses and "forum family" members, who totally understand what you and your family are going through.

Take care and just try to take things one day at a time at present.

PW xx

[Veema]

So sorry you have this in your life.

When my husband was first diagnosed, he became very badly jaundiced and that has honestly been the worst he's felt through the whole thing...once the stent does its job and the jaundice has gone (I believe it takes a good while for the bilirubin levels to get back to normalish), she'll start to feel better in herself. There are lots of ways to build her up and get calories in without using milk...have a look at some high calorie smoothies using fruit and veg with a lump of coconut oil or peanut butter for instance (they kept my husband going in the early days)...pinterest is great for ideas and coconut oil is supposed to be good for cancer. My husband was also prescribed omeprazole which helps the creon be absorbed and make it work better...might be worth asking about that.

And lastly...it's very scary when initially diagnosed...you say she is stage 4, which implies some spread, but you don't mention where this is...if she is offered chemo (or the benefit of a trial) take it and see if she tolerates it...my husband tolerated chemo really well and is still here 18 months down the line...we've just had some more crappy news, but he's determined to keep going as long as he can.

Good luck,

Vx

[Dandygal76]

Yes Veema, you are right on other calorie lifters. We blended in nuts and things in the nutribullet when making smoothies. Olive oil got drizzled or put into everything as well (1 tablespoon is 120 calories)... over veg, in scrambled egg... wherever we could squeeze it in. Wife&mum also gave me the recipe for fortijuice jelly which is on my thread somewhere. I also added coconut oil into the jelly.

And I agree, those initial weeks of diagnoses is horrendous but it does settle for most when they get the chance to fight back. x

[Julie1982]

Thank you for your kind words and support.

Today I'm feeling quite emotional, not helped by the fact I'm full of cold and have a sore throat!

Everywhere I go at the moment there seems to be talk of death and cancer, I feel so trapped and my emotions are up and down. Living on my own, when you break down it can be quite scary, as feels like it's never going to stop, but on the plus side no one can see the true pain that your going through.

Tommorow is another day and each day I'm trying to take in my stride.x

[Dandygal76]

Hey Julie, I am sorry you are feeling so low. Your emotions will settle though hun... I was exactly where you are at now on 5th February and it was total meltdown. And the whole family commented about how all we could see is cancer everywhere... tv, radio, magazines, conversations, collections, sponsorships... I can even remember almost bursting into tears in Tesco because every bag I took at the till had the Cancer Research charity on the side. Oh, and how many celebrities seemed to have succumbed to PC at the time as well... there were a fair few high profile PC cases. Well, we are almost 6 months later and although I think I acknowledge in the back of my mind sometimes, our brains are amazing and mine has managed to turn a lot of it back into white noise again now so that I do not notice it all.

My sister lives on her own and she was the same but had the situation she could not break down so much because of her kids - 8 and 12, especially as they were not told for a while afterwards.

And doesn't crying make our eyes look awful. Me, mum and my sister looked like we had all aged 10 years with wrinkly puffy eyes. I think that is what made us stop much of it in the end... my dad could see a mile off we had all been crying. So, eventually, you do learn to suck it up and not just that, tolerate the situation so much more.

A couple of months or so afterwards we were all sitting at the table for Sunday dinner and the conversation was how we never thought at the start that we would be able to sit there like we was and do something normal ever again... but we did and it was lovely. It will happen for you all as well.

And yes... one day at a time is a good way to cope.

I hope you feel a bit better soon.

xxx

[Julie1982]

Today is the day, 2pm we have our meeting with oncology, 4.5 weeks after diagnosis. Mums jaundice has come down significantly, however her very poor appetite has not improved leaving her quite weak.

I had really hoped that over the last month we would have been able to do a few nice things, visit a few places together and enjoy time together, sadly this has not been possible, I have spent a lot of time with mum just chilling on the sofa and being there if she ever wants to talk.

I remain off work and have no interest in my work right now, this is causing my family and me more worry! I have a demanding job which requires a high level of resilience which k just don't have at this current moment in time. Work have referred me to our occupational health team next Monday, I can't see that they will be able to help, as nothing can change the situation and thinking that the best thing I could do would be to resign with a good reference, take a career break and just find a part time job in a supermarket or something. Has anyone reading this experienced similar issues with work? Do you have any suggestions? Ironically I work in HR, so I'm normally the one managing such situations with managers and OH! I've only been there a year next week!

Time to go and shower and put my big girl pants on and be as strong as possible for mum. xxx

[Dandygal76]

Hey Julie,

I hope everything goes well today. The chemo can help with the symptoms for PC and once with the right team mum might be able to eat more and get a better quality of life.

Regarding your job, I really would advise you not to make any rash decisions like quitting just yet. There is nothing wrong with being off for a bit whilst you get your head around things. Non work related stress was put on my certificate but I am lucky, my work just let me take the time off (and still do whenever I need it) without further certs. I suppose it also depends on their policies as well because I am entitled to 6 months full pay sick leave and then half pay the rest of the year.

The thing is, when your mum starts to get the chance to fight back you don't know how things will be and what decisions will be made. It is so fraught at the start of this journey that it is difficult to imagine any normality returning but a new normal does slowly form.

Obviously it is a very personal decision and absolutely your decision, I am just saying if you can delay that decision then why not do that and err on the side of caution.

Much love to you and please update us after today. The waiting is the hardest bit around all of this.

xx

[Guest]

Hi Julie,

I know this sounds odd but please contact your local Macmillan financial adviser before you do anything at all about resigning. They are brilliant and will follow up for you.

Its a terrible shock for you and of course you want to support your family.

M xx

[Sueoliver]

Hi Julie,

My Mum died in January of this awful disease. My work were really great they let me reduce my hours and I was also signed off by the DR when things were really tough. Have you had a meeting with your work and asked to reduce the hours for now? Have you spoken to your GP it might be worth it.

I know how you feel but I am glad I kept my job as it really keeps my mind occupied now.

Take care of yourself and this forum is really helpful.

Love Sue x

[Julie1982]

Hi Sue

Unfortunately I have a very demanding job that requires a high level of resilience, I just don't have this, there are not other jobs in the team! I've been off sick 6 weeks, and have no desire to return, I just want to be with my mum and do anything I can. Having a career is no longer my current focus, mum is my number one! It upsets my mum that it has come to this but I am trying to reassure her that I'm not made of bricks, that o need to take a step back and want to be there for her.

Today has been a really bad day, mum has barely eaten anything and drinking is hard! She feels vile, has a horrible taste in her mouth! The doctor confirmed that her thrush had not gone so is now on tablets. I would do anything in this world to give my mum some energy right now, help her find that fighting power that I know she once had!

On Tuesday they offered mum chemo, she is taking some time to consider the side effects to each! We had done good news also that the biopsy of the organ they said it had spread to came back negative!! But it is still attached to majour blood vessels.

I have a long day ahead tommorow, am driving my dad on a 500 mile round trip to his brothers funeral! An unexpected death!

Thank you for your support, sorry for typos.

Julie xxx

[Dandygal76]

Julie, that is good news. It sounds as though you are down to stage 3 and I have seen people with great results from this... there is every hope for your mum. Still a perilous journey but so much more hopeful. x

[Sueoliver]

Hi Julie,

I totally understand and and I would be the same. I only work part time so it was different. The time with your Mum is precious and all consuming.

Look after yourself as well.

Love Sue xxx