Our story...

[WhatEvenisaPancreas]

I'm hoping writing this down will feel cathartic and allow me a nights sleep!

Hello! My step dad was diagnosed with inoperable pancreatic cancer with mets to his liver in January 17. It was discovered through a CT scan to get to the bottom of something unrelated, which turned out to be nothing. It was an incredible shock, obviously. He is 57 this year, incredibly fit (a postie) and healthy and had experienced no symptoms other than a tummy pain which the doctor said could be muscular.

No timescale was ever discussed as he didn't want to know, but he was told it was inoperable and would be on palliative care only. I took to Google straight away to absorb every piece of information I could, beforehand I didn't even know what the pancreas did or where it was, and leaned about the devastatingly bleak diagnosis. I went into full on psycho research mode, spewing information left, right and centre, wanting him to turn vegan, wanting him to take additional supplements, and suggesting things that weren't even legal. This was my way of dealing with it, although he wanted none of it and just wanted to follow the doctors advice. I think my research psycho mode also annoyed my sister. I made myself feel very ill, to the point of almost signing myself off work, with the feeling that it was down to me, and only me, to cure him. I felt like I had to keep everything and everyone together and conquer PC.

He was offered palliative chemo, two types; gemcitabine or folfirinox. He chose folfirinox. He has just (yesterday) had his 6th treatment and we are awaiting the results of the CT scan to check the progress, which is not nice. He really hasn't done very well with his chemo and is the only time he feels ill. Once he has recovered he is back to his normal self, he looks so healthy​, has put on weight as the doctor gave him permission to eat whatever he wants, to the point where he is having to buy new shirts haha.

Whilst the fact he feels so good when not affected by chemo is amazing, it also makes it very hard to comprehend and accept that he is so ill for me. Obviously I can deal with that, and would much rather he felt well, I'm just explaining how I feel. Why does he feel so well when he is so ill? I just don't understand.

It's been just over 5 months since diagnosis and nothing seems to have changed which I am entirely grateful for, but I am so confused. I go through all the stages, denial, disbelief, delusion, all the D's. Could he overcome this? Could they be wrong? Will be go downhill all of a sudden? I just don't get it.

He had a blood clot on his arm where his thingy me bobbie has been put in, but daily injections sorted that. This week it was found he had blood clots on his leg which are rather painful, and tonight he was rushed to hospital after feeling breathless as they thought he had clots on his lungs. Mum fell to pieces as she was on her own (I live 3 hours away which plagues me with guilt), but it was found it wasn't blood clots, his lungs were clear and he was sent home with morphine for the pain in his legs. Are blood clots common with cancer?

I have so many questions. I mostly want to know what will happen so I can prepare, but I guess noone can tell me that. I pray so hard that by some miracle he will survive this and we can just go back to being normal. My psycho mode has dimmed a little, which allows me to feel a little better, then extremely guilty with the feeling I could be doing more the very next second.

Reading your experiences has helped a lot, so thank you. I apologise for this waffle and if you've made it this far, thank​ you, you deserve some sort of prize.

Xx

[Didge]

I love your title! In spite of extensive knowledge of cancer I had no knowledge of pc or even where it was like most of us. Now all on here know where, what shape, symptoms of something wrong etc.

I am glad your step dad is making good progress. Folfirinox can work wonders and if it was caught early even though metastatic it could destroy all the tumours. The prognosis is not good with metastatic cancer but you learn to live for the day and never let hope entirely die. There are always a few who defy the odds and hope for new treatments to become available. I think we all suffer from feeling we should do more but ultimately it is the patient's choice what they do and we have to respect that. Xx

[WhatEvenisaPancreas]

Thank you for your response, Didge. Isn't it amazing that we now have an incredible awareness of PC, it's signs and symptoms etc, yet so sad that it took something so profound for that to happen.

I'm not even sure he is making good progress, he hasn't had any scans etc since the diagnostic ones, but in terms of his overall health when not affected by chemo he's doing good. He talks a lot about 'when he is finished with the chemo' and things he will do as if the chemo is going to cure him, but the doctors have said it won't. He also desperately wants to go back to work. Mum thinks he's delusional, but we leave him to it. I believe the mind is extraordinarily powerful and positive thoughts like this can only help.

I did quite a bit of reading post diagnosis on the types of chemo available and Folfirinox seemed the most promising, then again, everyone is different. He does really struggle on it though, he has his treatment on a Tuesday, then usually feels really quite poorly for a week, with a week of feeling well. Tiredness, nausea, lots of low moods and sadness, and the most incredible, annoying and incessant hiccups. Thankfully they did not come to play after the 5th round so fingers crossed!

It is the patient's choice, you're right. I definitely do respect that now and have stopped trying to cram vegetables and turmeric down his throat

[Didge]

I continued to try to cram turmeric and juices down my partner's throat until nearly the end but he countered it by eating kilos of liquorice all sorts as soon as my back was turned! Btw blood clots are common both with pc and the chemo but as long as it's treated it is manageable. If your step dad wants to believe he can be cured then that is how he copes x

[Elaine123]

Hi I think that is very common in family of PC sufferers that we try everything available in the hope we can either hold back the inevitable or cure them. My husband passed away in April and there was not a day in the five months since his diagnosis that I didn't try to hold back his progression. Your stepdad sounds as though he has an extremely positive attitude to it al so that will go a long way to helping him. Wishing you all the strength to continue to support him in the way he wants to live with PC. Take care

Elaine

Xx

[PCUK Nurse Rachel C]

Welcome to the forums. I appreciate that this is probably not the place that you thought that you would find yourself, however, I am sure you will find this a very supportive community to be part of.

I am very sorry to hear about your stepdads recent diagnosis of pancreatic cancer. Clearly, a huge shock for everyone, especially your stepdad.

My name is Rachel, and I am one of the nurses working for the charity, so please do not hesitate to contact us (Monday-Friday 10am -4pm- details below), should you wish to.

Best wishes,

Rachel

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Veema]

Yep...I'm another that turned to doctor Google in the hope of finding that miraculous cure...we force feed our loved ones all sorts of potions and supplements (it was green smoothies for us), but there's only one thing you can be sure of and that is that we all will die, whenever that may be.

Be very much led by your Dad...it's great that he has you to champion his cause, but sometimes it's better to sit back for a bit and enjoy what you have right now. Positivity is an amazing thing and I'm convinced that it went a long way towards my husband lasting as long as he did...he also didn't believe he was going to die and I let him think that...he also was very well right up until the last couple of months...even the folfirinox didn't have many ill effects.

Lots of love and strength...there will be some tough times ahead, but for now enjoy the fact that he feels well and get some memories made.

Vx

[Justamo]

Yup. Been there, done that etc.

I am so stupid that I thought the harder I worked looking after my guy, then the quicker he would get better. About the only thing I did right was trip over PCUK on my way to the chanting-at-the-moon/eating green goo/drinking organic tea websites.

You'll get all sorts of help on here. Sensible, helpful stuff from sensible, kind and helpful people, realistic advice from the helpline and the occasional streak of anarchy. And total nonsense from me. But, please bear in mind that your mission is not to find a cure for PC. Other people are doing that. You are required to put the kettle on when necessary, have a box of tissues handy, and keep yourself more or less in one piece most of the time. If you want to have a meltdown have it on this forum and we'll all rally round.

Do you have a name ? I was going to call you PCV (for PC Virgin) but it sounds too like PVC. As in double glazing.

Take care

Mo

[WhatEvenisaPancreas]

Thank you everyone for your lovely words. I am very thankful. I feel less frantic today, I've traveled up to be with him and my mum. Today is a bad day, he has been crying lots, and has begun to have panic attacks which are quite scary. I'm hoping tomorrow to get mum to call the palliative care team and ask for some advice. I don't know whether they can get him some counseling or whatever to help? Does anyone have any experience of this?

It's a bit Jekyll and Hyde with him, off chemo he's very positive and you wouldn't know anything was wrong, when he's had his treatment and for the week after it's almost as if he believes he's going to die imminently and it's the end of the world, so down, so emotional, and nothing like himself.

Mo, that's exactly what I should be doing. That message really hit home, thank you.

My name is Kathryn. X

[Justamo]

Hi Kathryn.

I'm sure I've read a post somewhere about patients having bouts of depression during chemo. Check out the list of side effects for whatever drug he is having. Somehow it's easier to deal with depression if you have a hook to hang it on, rather than blame it on a bleak prognosis.

Glad you're with the family, sleep well (ish) and God bless

Love Mo

[Elaine123]

Hi Kathryn...Pete was similar with the crying and negative thoughts at one point and the GP prescribed an anti depressant which after a time lifted his mood which then added to his quality of life. I am afraid PC is such an up and down disease that as one issue is under control then another takes its place. Just concentrate on the issue that is happening at the moment , you will eventually realise that everyone's journey is so different that there is no rules as to what should happen and at what stage things happen. Thinking of you all

Elaine

X

[WhatEvenisaPancreas]

Thank you again for your replies I've spoken to mum today and she's going to give the palliative care team a call on Monday to explain the panic and dark moods etc and hopefully there's something they can do about it. Mum's also going to see some sort of therapist herself next week so is going to ask if there's anything she can recommend. He's just gotten up for the first time since I arrive home yesterday afternoon. He's on the verge of tears a lot, though holding it back, and doesn't look very well his entire left leg is so swollen and painful from the blood clots. He said on Sunday the cloud will begin to lift and he'll start to feel like himself again. I wish chemo didn't affect him so much but I suppose I should be grateful he has the opportunity of chemo. We should find out the results of his CT scan on Thursday, so fingers crossed.

He's determined to get up early for the rugby tomorrow too so that will do him good. Xx

[WhatEvenisaPancreas]

Hello again

Just wondered if anyone had any outside support from like Macmillan or Marie Curie etc?

I'm not really sure if we'd qualify but I'd really like my mum, and Steve, to feel a bit more supported. Other than the oncologist that they see once every other week for bloods they're sort of on their own. Mum's struggling with it a little at the moment, and my step dad is really struggling mentally. He has barely been out of bed since his chemo day (Wednesday), only for a trip in the ambulance and about 20 minutes in front of the TV on Friday.

I've told mum to ask for some support but she thinks there won't be any available as there's nothing they need to 'do' nursing wise.

Kathryn x

[Justamo]

Is there a hospice near you ? Marmalade did some courses at a hospice and found them very helpful. Pending more advice from forum members, I think you should phone McMillan and get advice from their helpline.

Your mum can claim Attendance Allowance too. McMillan will advise and will probably submit a claim for her. Extra money is really helpful for laundry, taxis etc.

You'll get lots of answers to this one Kathryn.

Take care

Mo

[Veema]

It depends on your area. In our area, we dont have macmillan in the community because the council wanted a service that covered other illnesses as well as cancer, so our hospice nurses cover it. You should definitely be able to get some support though. You will need his oncologist or specialist nurse to refer you to Macmillan or whoever covers your area.

I think Marie Curie only deal with end of life care, but I might be wrong.

Good luck.

[raun cesar]

Attitude is what change things and it seems your stepdad got it. I wish you all the strength to support him. As a carer your mom can claim allowance…Good Luck!!

[WhatEvenisaPancreas]

Hello everyone,

We are in a very, very different place now unfortunately. I'm not really sure where to turn or what the answer is, or what to even say, so I'm just going to spill it out as it comes.

My step dad is now a shadow of himself, he was slim to begin with but has lost a lot of weight (in the past 4 weeks he has lost 21lb) and looks horrific. He doesn't eat (hasn't eaten since Monday) and spends all but an hour or so in bed everyday. He is constantly tired.

He finished his first round of folfirinox, the scan showed the tumour in his pancreas had shrunk and the lesions in his liver had begun to die. For one reason or another he ended up having 9 weeks or more off before beginning round 2. He had the first lot, went back to the oncologist for his bloods to be taken ready for his next dose and they refused it as he'd lost 13lb.

He's since decided he's not having any more chemo any way and has had his PICC line out.

I don't know what to do. Neither does my mum. He's just wasting away! He's tried the drinks, they give him heartburn and won't drink them, he's on steroids which sometimes make him feel hunger but every time he eats he pukes it back up (he's just puked back his coffee for goodness sake) and so doesn't want to eat because he doesn't want to puke.

The oncologist is organising another scan to check what's going on, which scares the living stuff out of me, and wonders if there is perhaps a blockage.

Is there a blockage? Is he just dying? Is this what happens towards the end? I guess what I'm trying to ask is is this normal??

He has never asked about a time frame. This is the most stressful thing I've ever endured! Please shed some light if you're able. Xx

Edited September 1, 2017 by WhatEvenisaPancreas

[Justamo]

Kathryn, I'm so, so sorry to hear this news. I don't blame him one little bit for not wanting to eat when all he does it throw up.

My darling cousin died quite recently. Despite being a professor of medicine she forgot all about her training and asked her own doctor what was going to happen 'at the end'. She was told that gradually she would eat less and less, drink less and less, and sleep more and more. And then she wouldn't wake up. Sounds very simplistic, but it comforted Joan and therefore it comforted her partner and me. And that's exactly what did happen - at home, in her own bed, with her dog lying beside her and her partner holding her hand.

You will get some very sensible and informative answers from others on this forum, I hope they can help you. Meantime I am thinking of you and your mum and praying for you all.

Love and hugs

Mo

[WhatEvenisaPancreas]

Mo, thank you. I think the problem is that I have never really accepted that this would kill him. He seemed pretty invincible. This is all just so sad. I really struggle to know what to say to him, how to be around him etc. Just all so heartbreaking.

Constant crashing waves of realisation. X

[Veebee]

Hello I'm sorry to read that your stepdad and your Mum and yourself are at this stage of this dreadful disease. I don't know what else to say to you but just be with him and make sure he knows that he's not alone. The hard reality of the situation with my late husband didn't dawn on me until his last hours and even then, I thought he had a UTI and he would have antibiotics and hang on somewhat longer. We go on so long with them through the ups and downs of this illness that when the actual time comes for us to face up to the facts, then, we want to believe that they'll hang just a bit longer and, maybe, rally once more. My thoughts are with you all. xxx

[Justamo]

Thinking of you Kathryn, and hope you're coping.

Love, Mo

[WhatEvenisaPancreas]

Hello everyone.

Unfortunately, or fortunately perhaps, my step dad passed away in the early hours of yesterday morning.

The very next day after sending my last post he was taken to hospital. It turned out it wasn't the coffee he puked, but dried blood. They gave him fluids and waited until he'd eaten a meal, kept it down, and then discharged him. The following evening he was taken by ambulance to the hospital after continuing to puke old blood where, thankfully, they admitted him. They ran some tests, gave him xrays and put a camera down his throat and couldn't find active bleeding, only an ulcer at the bottom of his esophagus which they assumed had been bleeding.

His red blood cell count was very low so they transfused him with 3 units over the course of 3 days but it didn't make a difference. Nobody really explained how poorly he was, although we had an idea.

He was admitted Sunday evening, and whilst visiting Wednesday evening he became very anxious and delirious, seeing cracks in the wall, restless etc. And the following morning we had a call from the nurse to say he had deteriorated significantly and he'd been put on a syringe driver. She advised us to go, and so we did.

He was conscious, he explained he was told there was nothing more they could do and whilst he wasn't worried about dying, he was worried about us. We had time to talk though his worries, reassure him, and spend such lovely quality of time with him, reminiscing, laughing and joking. We spent the entire day and night with him and by the evening he was quite out of it, sleeping a lot, waking up and giving us a smile. It was a lovely time, yet so sad. They fast tracked the getting home process and he was able to be taken home the following morning at 10am.

By this point he was unable to hold a conversation and was very sleepy but unable to rest as he was puking blood every 15 minutes. It was a fight to keep his symptoms under control. Thankfully, Saturday evening after another call to 111, some hit squad angels disguised as community nurses arrived and actually sat us down and had a conversation with us. They explained he was hours away, what to expect, and prescribed his everything they could. From then on he was absolutely peaceful. No more blood. It was a lovely time where we could spend time together, talk to him, have him squeeze our hand and reminisce.

I just wanted to share my experience and to say thank you. Whilst I didn't post often, I read a lot and was always amazed at the support on offer and the honestly and vulnerability of the posts. This really is an amazing place.

To those people still coping, I wish you all the very best and send you all my love and strength.

Kathryn xxx

[sandraW]

Kathryn,

I am sorry to hear your step dad has passed away, this disease is relentless, it is truly horrible.

Even though your Dad dd not have an easy passing, I am glad you managed to get him home and that the "angels" gave him the help he needed.

As you say the forum is an amazing place, I got lots of support when I needed it too, sending you love, strength and a ((hug)) for the next stage of this journey, take care sandrax xx

[Veema]

So sorry Kathryn...there are no words that will make you feel any better, but you can take comfort from the fact that his death was peaceful and you were with him.

Much love and strength...my Dad died 2 weeks ago and I'm finding it much worse than when my husband died...you just expect them to be around forever.

Vx

[PCUK Nurse Jeni]

Dear Kathryn,

We are very sorry to hear of your stepdad's passing.

Sending our condolences to you and your family at this sad time.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707