A forum for family, friends and carers of pancreatic cancer patients

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
msemma87
Posts: 6
Joined: Sun Nov 09, 2014 9:27 pm

The beginning of a hard journey

Postby msemma87 » Wed Nov 12, 2014 3:10 pm

Hello all. Here is my story, my dad has recently found out he has pc which has spread to his liver. He is still waiting for a biopsy but we sadly know this is not good. I just cant believe this is happening. Its annoying at the moment as in the last couple of months I have moved about 70 miles away and I dont drive but I am trying to be there as much as I can.

Hes got my mum, but her health isnt great either and my brother is nearby at least. My dad has already decided not to accept any chemo offered, which I respect his decision. Last time I was there we talked, talked for a good 3 hours, mostly nice stories but of course about what is going on. Hes told me hes not scared of dying but hes more worried about the aftermath and how we are going to cope. He said he can die a happy man knowing his job as a father is done. But I think its so cruel hes spent his whole life working and providing for his family, he finally retires this year and now this happens.

I thought to come on here because I know ive got to be strong but myself am already struggling to cope. I feel very much alone. I am in a relationship but its very complex so at the moment its hard to get support from him. As I said im trying to be strong and enjoy whatever time we have left but im scared.

I would be grateful for any advice please as I want my dad to get the best care and most importantly he is not in any pain. I feel overwhelmed at the moment as I know there is loads to sort out but feel lost.

Thank you

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: The beginning of a hard journey

Postby J_T » Wed Nov 12, 2014 5:24 pm

Hello welcome to the forum and so sorry to hear your dad's diagnosis.

All the things you are feeling are normal and everyone here will understand. You will get lots of support and advice from the forum members and you can get specific advice from the two nurses here, Jeni and Dianne. PC is their specialism and you can ring or email during normal working hours. They are brilliant, use them!

Choosing whether or not to accept treatment is a very personal thing, sounds like your dad has thought things through so good for him. He may even change his mind at a later date.

Do keep us updated of his progress.

Regards
Julia

EmmaR
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: The beginning of a hard journey

Postby EmmaR » Wed Nov 12, 2014 5:54 pm

Hi ,yes it is a hard journey but this forum will get you through it to the end be it long or short as Julia said use the nurses they have helped so many of us and we do know what you are going through this time ast year I was where you are with my hubby and I know my daughter was feeling like you sadly we lost a wonderful man just 8 weeks after diagnose but the forum family gave us strength to cope with it so please remember you are not alone .
Keep strong
Sending love and hugs
EmmaR x

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: The beginning of a hard journey

Postby nikkis » Wed Nov 12, 2014 5:57 pm

Hi there,
Sorry to hear about your Dad, it sounds like you are there for your parents as much as you possibly can be, so don't feel bad if you fall apart a bit from time to time. My advice would be to make sure your parents get support from whoever is in their area early on, Macmillan, a hospice and maybe someone they trust at their GPs.We have been supported by our local hospice in the community for over a year now, and they are great, and it really helps to build those relationships before you really need them.

Most people find the forum helps, either for advice or just to let your feelings out, so post whenever you need to and I hope you can feel a little bit less alone,

Best wishes,

Nikki

msemma87
Posts: 6
Joined: Sun Nov 09, 2014 9:27 pm

Re: The beginning of a hard journey

Postby msemma87 » Wed Nov 12, 2014 6:16 pm

Thank you for your kind words. It just annoys me that its taken so long to get a diagnosis, because they havent done the biopsy yet its still not confirmed. But the scans have shown it is cancer of the pancreas and has spread to the liver so at the moment hes not being offered anything and the biopsy isnt until monday and then the wait for the results!!!! until then my poor dad has got to wait in limbo, knowing he hasnt got much time left. Im heartbroken and so close to christmas too. its very cruel.

I know his appetite is low but been trying to get him little treats he enjoys which he likes. I wanted to take my parents out for a meal but because my dad cant eat much he didnt want to go, but he told me 'take your mother out as she needs to get away from me' awwwwww. Thanks for the support.

rsk1974
Posts: 80
Joined: Thu Jul 31, 2014 1:21 pm

Re: The beginning of a hard journey

Postby rsk1974 » Wed Nov 12, 2014 7:52 pm

This is hard journey and at least on this forum we have all gone through the emotions and understand. I think most people have something to get frustrated with in the diagnosis etc. Stay strong and your dad sound's an amazing man

brodders
Posts: 65
Joined: Fri Jun 20, 2014 7:51 pm

Re: The beginning of a hard journey

Postby brodders » Wed Nov 12, 2014 8:42 pm

Hello, hope you are ok. Your dad has said things very similar to what my mum said when she was first diagnosed. Like you I also live around 70 miles away from my parents, my precious precious mum died nearly 7 months ago - can't believe I am saying that. It is a hard journey but you will get strength from your dad's strength. You have this time to love him, not everybody has this, which I do take comfort in now ( you probably don't feel like that at the moment ) Take care, love Cate. Xx.

brodders
Posts: 65
Joined: Fri Jun 20, 2014 7:51 pm

Re: The beginning of a hard journey

Postby brodders » Wed Nov 12, 2014 8:47 pm

Ps just re read your post - my mum didn't experience any pain, just discomfort in her last night. Not everyone is as lucky, she actually 'zoned out' accepted her death and passed away incredibly peacefully. So please don't worry not everyone experiences pain and if they do there are some amazing nurses around who will try to alleviate it. Xx

Pete12
Posts: 45
Joined: Sun Sep 21, 2014 11:36 am

Re: The beginning of a hard journey

Postby Pete12 » Wed Nov 12, 2014 11:32 pm

Sorry to hear of your dads situation. Have they definitely confirmed that it has spread to his liver? The reason I ask is that I was diagnosed with cancer in my bile duct in April this year, and they carried out a biopsy of my liver as they suspected from blood tests that it had spread. The test came back stage four which they said was confirmation that the liver was affected. I had a further liver biopsy taken during the procedure to put in a stent to allow bile to drain in to my duodenum. They said that this confirmed that the cancer had spread to my liver and that there was nothing more that could be done and sent me home. Two weeks later I received an appointment to see a specialist at my local hospital. I assumed that the meeting was to arrange chemo. however, I was shocked when the Consultant started to explain that he would be carrying out a Whipple procedure on the 6th June and that he had reviewed the test results, and in his opinion my liver was not affected. The operation went well and all the cancer was removed along with 4 affected lymph nodes. I am still healing but getting stronger each week. I had a CA19-9 tumour marker blood test three weeks ago which came back as 20 which is considered within normal levels. It's always worth getting further opinions from specialist consultants.

Good luck
Pete

Dcoleman
Posts: 38
Joined: Wed Apr 30, 2014 10:46 pm

Re: The beginning of a hard journey

Postby Dcoleman » Thu Nov 13, 2014 1:00 am

Really sorry to hear of your dad. I found this forum a great help whilst my dad was going through his illness. His also spread to his liver. It was a year after the first scan he had at which they said he had a small cyst that they diagnosed pc. I still feel guilty that we didn't ask for a second opinion and that other treatment could of been done to help him but hindsight is a wonderful thing and I can't get angry now. Our local hospice were lovely so try and get good contact if you have one local to you. Dad wanted to be cared for at home. Like a few other people have put on here my dad never seemed to be in much pain not until the last 2 days and even then it was bearable. He was having oramorph up until a week before then unfortunately his swallowing became poor and they put a morphine driver in. My dad never moaned about his illness. We were very lucky that dad passed away extremely peacefully with us all with him. It was devastating but I got a lot of comfort from reading the posts on here. I tried to keep a little blog going every few days to firstly air my feelings and also get feed back from others on here that have been through what I was going through. My dad passed away on nov 1st which ironically was the start of pc awareness month! Take comfort that you are most definitely not alone and we are all there keeping you strong. X

msemma87
Posts: 6
Joined: Sun Nov 09, 2014 9:27 pm

Re: The beginning of a hard journey

Postby msemma87 » Thu Nov 13, 2014 9:09 am

rsk1974 wrote:
> This is hard journey and at least on this forum we have all gone through
> the emotions and understand. I think most people have something to get
> frustrated with in the diagnosis etc. Stay strong and your dad sound's an
> amazing man


Thank you, yes he is an amazing man. so smart and with him finally retiring he was looking forward to enjoying life, very cruel what has happened xx

msemma87
Posts: 6
Joined: Sun Nov 09, 2014 9:27 pm

Re: The beginning of a hard journey

Postby msemma87 » Thu Nov 13, 2014 9:15 am

Pete12 wrote:
> Sorry to hear of your dads situation. Have they definitely confirmed that
> it has spread to his liver? The reason I ask is that I was diagnosed with
> cancer in my bile duct in April this year, and they carried out a biopsy of
> my liver as they suspected from blood tests that it had spread. The test
> came back stage four which they said was confirmation that the liver was
> affected. I had a further liver biopsy taken during the procedure to put in
> a stent to allow bile to drain in to my duodenum. They said that this
> confirmed that the cancer had spread to my liver and that there was nothing
> more that could be done and sent me home. Two weeks later I received an
> appointment to see a specialist at my local hospital. I assumed that the
> meeting was to arrange chemo. however, I was shocked when the Consultant
> started to explain that he would be carrying out a Whipple procedure on the
> 6th June and that he had reviewed the test results, and in his opinion my
> liver was not affected. The operation went well and all the cancer was
> removed along with 4 affected lymph nodes. I am still healing but getting
> stronger each week. I had a CA19-9 tumour marker blood test three weeks ago
> which came back as 20 which is considered within normal levels. It's always
> worth getting further opinions from specialist consultants.
>
> Good luck
> Pete

Im glad your getting better and beating this horrible cancer xx well his story is, he first went for a blood test and ultrasound scan thinking he has gallstones. they found dark spots on his pancreas and liver, so a meeting with the doctor at the hospital explained there is a strong chance its cancer. so another long wait for a ct scan which has confirmed it is cancer and it started on his pancreas and has spread to his liver. now he is still waiting for a biopsy to see what stage it is. must be horrible waiting, good or bad you just want to know xx

msemma87
Posts: 6
Joined: Sun Nov 09, 2014 9:27 pm

Re: The beginning of a hard journey

Postby msemma87 » Thu Nov 13, 2014 9:18 am

brodders wrote:
> Ps just re read your post - my mum didn't experience any pain, just
> discomfort in her last night. Not everyone is as lucky, she actually 'zoned
> out' accepted her death and passed away incredibly peacefully. So please
> don't worry not everyone experiences pain and if they do there are some
> amazing nurses around who will try to alleviate it. Xx


Im so sorry for your loss hugs xx
my dad is worried about, in his words 'losing his marbles' while on pain relief and he had a bad experience on morphine when he had an operation on his legs a few years ago. That is his biggest worry at the moment

Fifi

Re: The beginning of a hard journey

Postby Fifi » Thu Nov 13, 2014 8:53 pm

Hi,

Sorry to hear about your dad. My dad also has this and has spread to his liver. I live about 70 miles away too, and I don't drive. I get the train home every week. My boyfriend isn't very supportive, and constantly complains about having to drive me, even though he only takes me once a fortnight. He is good with my dad whilst there, so I guess that is something.

I know how hard this is for you. It breaks my heart what is happening to my wonderful dad, and I would give anything to take it away. My advice to you is to carry a notebook with you to every appointment. Write down questions you may want to ask. Don't be scared to ask them. Comsultants don't tend to offer information. Also, keep chasing all appointments. Time isn't a thing you can waste.

Also, I understand and respect that it is your dads decision about treatment, but, my dad was diagnosed on the 13th February. They gave him 6 months. He's still here. He's put 2 stone on. He looks amazing. He's doing well. Chemo has worked so far and he is on a break from it. I know that sadly, this doesn't happen for everyone. Just something to think about?

Please keep posting.

Leila xx

msemma87
Posts: 6
Joined: Sun Nov 09, 2014 9:27 pm

Re: The beginning of a hard journey

Postby msemma87 » Sat Nov 15, 2014 2:43 pm

Fifi wrote:
> Hi,
>
> Sorry to hear about your dad. My dad also has this and has spread to his
> liver. I live about 70 miles away too, and I don't drive. I get the train
> home every week. My boyfriend isn't very supportive, and constantly
> complains about having to drive me, even though he only takes me once a
> fortnight. He is good with my dad whilst there, so I guess that is
> something.
>
> I know how hard this is for you. It breaks my heart what is happening to
> my wonderful dad, and I would give anything to take it away. My advice to
> you is to carry a notebook with you to every appointment. Write down
> questions you may want to ask. Don't be scared to ask them. Comsultants
> don't tend to offer information. Also, keep chasing all appointments. Time
> isn't a thing you can waste.
>
> Also, I understand and respect that it is your dads decision about
> treatment, but, my dad was diagnosed on the 13th February. They gave him 6
> months. He's still here. He's put 2 stone on. He looks amazing. He's
> doing well. Chemo has worked so far and he is on a break from it. I know
> that sadly, this doesn't happen for everyone. Just something to think
> about?
>
> Please keep posting.
>

> Leila xx

Thank you for post Leila, good news about your dad. its lovely to hear positive progress xx just trying to stay strong xx