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Charlie81
Posts: 11
Joined: Mon Jan 21, 2019 5:06 pm

loosing hope

Postby Charlie81 » Tue Feb 05, 2019 9:11 pm

I know that people come here for hope and for solidarity and there are some amazing people on here. In particular KeithKerry and toodotty, for their wisdom and bravery - they astound me, and veema have really struck a chord with me as a post she wrote about her Dad could have been written by me.

However, tonight I can't write a hopeful post. I am lost. For those of you that haven't read one of my posts my, 64 year old, Dad has been diagnosed with pancreatic cancer.

I can tell from other posts on this forum how much we all love our loved ones and I can hear how special and unique each of them are to you all. So I would like you to understand a bit about me and my Dad. He is my rock, the only man that has never let me down (my husband badly let me down when I was pregnant with our second child but my Dad was there for me). My Dad is funny and I mean really funny. He knows how to appreciate life and could always find the maximum joy in any situation (either by just stopping and taking time to appreciate how amazing something simple is - like marvelling about how wonderful it is to eat cold watermelon in the sun, or getting blankets and sitting under the stars and watching for shooting stars, to midnight swims, or being the last in the pool in the evening sun, trying to buy the biggest Christmas tree, our stupid wassapp conversations, or silly games). I could talk to him about my problems and if I ever had anything that needed fixing he would be there - even if I didn't ask him. I would just turn up at home and he's be there mowing my lawn or fixing my door. He is an amazing grandfather (I have two boys: 2 and 4) and he has already built them a den in the back garden. Life will be infinitely greyer without him.


Our journey with pancreatic cancer started after several incorrect diagnoses, and one trip to the doctors where they just said no it isn't your heart and didn't even bother to investigate what it was. This period was from the beginning of September until we eventually went private in the middle of December. He was diagnosed in the middle of January and we are still waiting to see an oncologist to see if he will be offered chemo but he has lost a lot of weight and he has now lost his appetite. It started in the tail and was 7cm when diagnosed, which I know is big, with the vomiting that has now started I am scared that it is now blocking the small intestine, which probably means the tumour will now as large as the entirety of the pancreas. He also has breakthrough pain and cannot tolerate morphine.


When I visit he is still talking about recovery and plans for a barging holiday, even though he has been told he is terminal and I am terrified that when we see the oncologist he will be told no treatment. I know that the statistical prognosis with chemo doesn't really feel that much longer than without chemo but I would rather, if he has to leave us, that he goes with hope, still talking about a time that might be happier than with no hope and simply sent home to contemplate his fate. If I am honest I think I can see that hope fading in him daily.

I am so sad on so many levels. I will miss my Dad more than words can ever convey but to see his lovely spirit broken will be the worst thing I will ever have to endure. I know that none of you can make this better and it can be hard to respond under those circumstances but I needed to tell someone. The only thing that I have that is a positive for me is that I have no regrets about my relationship with my Dad, my whole life has been spent making him happy because his happiness makes me happy so I chose a house to be near him (and my mother) and we have had summer holidays and Christmas holidays together for all my life and I am now 38.

My whole life I have felt blessed because I have never measured my happiness in money but in my relationships and I had my parents, my husband, and my two boys and that was all I needed. I know it sounds corny but it is 100% true. If I was driving to work and was feeling down about something this is how I would cheer myself up. I would tell myself that I am rich in life because I had all the people I loved and I still know that I am blessed with my children, husband, and mother but my Dad will leave a hole that will never be filled.

Sorry for bringing you down, I know you are all going through your own s**t, and while I am not hopeful there are people who beat this thing even with a stage IV diagnosis so don't give up hope.


Love to you all. xxxxx

Kerry
Posts: 26
Joined: Wed Jun 20, 2018 7:22 pm

Re: loosing hope

Postby Kerry » Tue Feb 05, 2019 9:33 pm

Dear Charlie,

When I read your post it resonated in so many ways and I really feel for you.

My dad meant the world to me and was the most kind thoughtful man I’ve ever met. We never had lots of money when we were kids but I had the best childhood anyone could wish for. I also had no regrets and had spent lots of time with my dad, even more so an adult. My dad knew how much he was loved, even if we didn’t say it out loud all the time.

I wish I could offer you some hope in what I know is such a desperately terrible time. What I can say is that your dad’s life is spread across many years and this is a small part of it. Seeing him suffer and become weak is heartbreaking but you will in time remember the good times and the times when he was strong and healthy.

My dad couldn’t tolerate morphine and ended up in hospital talking about all sorts of wierd stuff and acting really strange. He was given the synthetic version of morphine (Oxy something) and was a different man with this. Ask the doctor if your dad can try it. Apparently it’s more expensive and that’s why they don’t give it to everyone.

I’m sure you’ve been told about creon but if you haven’t, ask about this too. It helps with digestion and should be prescribed for your dad. You could also ask for him to see a dietician - it didn’t help my dad much but I know some people have found it useful.

Give the nurses on this site a call. I found them extremely helpful.

Make sure you look after yourself and get support where you can. I hope your dad gets seen soon and is offered some treatment.

Charlie81
Posts: 11
Joined: Mon Jan 21, 2019 5:06 pm

Re: loosing hope

Postby Charlie81 » Tue Feb 05, 2019 9:56 pm

Kerry,

Thank you, your words have genuinely given me some comfort. There is such a lot of truth in them.

Something that has really helped me is that when my Dad was diagnosed I felt like hardly anyone would understand because I believed that my relationship with my Dad was special but now I realise that there are actually a lot of people who have a similar kind of special relationship with their own Dads. It helps to connect and know that I am not alone.

I think you are right. In time I will be able to see this as a small part of his life. Moreover, while his life had some tragedies (my parents miscarried two boys, which is why I am so sad that he is missing out on helping to bring my two boys up), we have also been extremely blessed and happy in this life. This is not an ending we would want for anyone we love but I do believe that counting your blessings helps and I even now I can do that. I greatly appreciate you taking the time to read my post and to respond. I appreciate your compassion It does help to know others care.

Charlotte xx

Saxon
Posts: 24
Joined: Mon Jan 15, 2018 8:35 am

Re: loosing hope

Postby Saxon » Wed Feb 06, 2019 2:10 pm

Charlie,

Read your story and really feel for you.

You have obviously been blessed with loving parents and a devoted father who is full of life and been a strong and positive influence on your life. The journey ahead will not be easy, but he has the benefit of a loving daughter and family that will stand by him and be there to support him and remind him of all the good times that he's had and to see first hand the fruits of his labours in bringing you up.

I'm sure that with your support he'll be able to maintain his positive outlook during the dark times and plan for whatever the future holds.

Charlie81
Posts: 11
Joined: Mon Jan 21, 2019 5:06 pm

Re: loosing hope

Postby Charlie81 » Wed Feb 06, 2019 7:08 pm

Thank you Saxon, I do appreciate that you took time to write to me. People's kindness is a comfort and as awful as this is, you are right, I have been blessed with my parents and I realise that some people grow up without a parent or worse. Also I cannot imagine how people feel who are facing this alone.

I don't know how much comfort we can really provide my Dad as I feel that facing your own mortality is something that you can only truly do by yourself but we are there for him and we will be present with him to the very end doing anything and everything that we can to help him. I wish I believed in God and heaven. It would be such a comfort to think of us all reunited.


Thank you Saxon and I don't know your story but I hope that you or your loved one is winning the fight.

J9pkr
Posts: 16
Joined: Wed Sep 26, 2018 8:35 am

Re: loosing hope

Postby J9pkr » Wed Feb 06, 2019 10:02 pm

Hi Charlotte,

My Mum (72) was diagnosed with inoperable PC which has spread to her liver in September.
It was the most horrific day of my life so far. It was a complete shock, Mum has never smoked always been very fit and healthy and it came out of the blue. I asked her to go to the docs as she said she had a feeling of being full and sometimes feeling nauseous and under the weather.
I am an only child and Mum and I are so close and she is my best friend. And like you we Holiday with my parents spend every Christmas with them etc we live 10 mins away from each other and are a close knit unit.
For the first month post diagnosis it was very dark days and I thought I would never smile again. I know what you are going through and it is cruel and horrific. In accepting the situation I went through shock, denial and every emotion you could think of whilst trying to stay positive for Mum and also be a Mum and be strong for my 10 year old son.
It is a rollercoaster ride and we are now nearing the end of her first cycle of chemo. This has not been straight forward and she has really suffered with side effects of the drugs. To watch someone you love feel so poorly is terrible but a strength comes from somewhere that you do get through it. There are lots of dark moments but much of it is peppered with lighter times. I am strong because she loves me and she is strong because I love her. Without sounding too sentimental your children will give you strength as my son does me. My Mum is devastated by the thought she will not see my son grow up and that is one of the most heartbreaking things about this diagnosis.
I hope your Dad is offered some treatment as exposure to an Oncology team does make it more bearable and although there does not seem to be many good news stories about PC online you do hear about patients that are doing well etc from the consultants and that does give you a degree of hope and a chance to consider a more positive future than you can see at the moment.
I wish you the very best for your journey. J

kate2101
Posts: 86
Joined: Fri Jun 15, 2018 4:20 pm

Re: loosing hope

Postby kate2101 » Wed Feb 06, 2019 11:32 pm

Hi Charlotte

I’ve been trying to find some words of comfort for you since reading your post a couple of days ago. I am 60, diagnosed stage VI in June. I have three children (big ones!) 33, 27 and 23. Unfortunately, although I had a wonderful step father for most of my adult life until he passed away 4 years ago, my relationship with my father was non existent. I envy your relationship with your father but I know that comes at a price and it’s so hard to watch someone you care for so much suffering. Talk about repeating mistakes, my first husband and I divorced about 12 years ago and he’s been very absent in his children’s lives. I remarried only 2 years ago, full of plans for a happy retirement until this nightmare reared it’s head. I feel really guilty for giving my children this problem when they should be worry free and enjoying life
and very angry that my life has been turned upside down.

From my experience, early days after diagnosis was the worst time. I hope your dad is offered treatment very soon, it’s surprising how you get into a routine. I was given a very poor prognosis as I had multiple tumours in the liver and the best on offer was chemo (Folfirinox) and a prayer. Very briefly, I responded very well to the chemo, tumour markers dropped from off the top of the scale to not far off normal. Not sure if you’ve read any of my recent posts but I have just returned from America where I had open Nanoknife procedure. Biopsies of my liver tumours show all benign and the pancreas tumour has been ‘zapped’. I’m under no illusions that this is a cure but hopefully might buy a bit more time.

Please don’t give up. Research all you can and think outside the box. Your father is very lucky to have your support as I am to have the love and support of my lovely children. Be brave x

PCUK Nurse Jeni
Posts: 1082
Joined: Mon Jun 14, 2010 1:30 pm

Re: loosing hope

Postby PCUK Nurse Jeni » Thu Feb 07, 2019 4:04 pm

Hello Charlotte,

Thank you for sharing your very moving post and speaking so beautifully about your dad and the relationship you have.

As others have said, its a very precious relationship, and you are fortunate that you have had the privilege of this. But as Kate said, it comes with a price.

I am sure that you have touched so many on here, and we all hope that your dad gets to start some treatment soon, if he is able to do so.

Its difficult to fathom what you must be going through right now, and also trying to be there for your little boys. I wonder Charlotte, have you heard of Winston's Wish at all? An excellent children's charity which helps support children whose loved ones have a life limiting illness - here is the web link in case:

https://www.winstonswish.org/

It might be something you wish to have a look at over time?

Charlotte, we are always available should you wish to call or email.

Very best wishes,

Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: loosing hope

Postby Proud Wife » Fri Feb 08, 2019 6:39 pm

Hi Charlotte

I am so sorry to hear that your Dad has joined the club nobody wants to join. I lost my hubby to pancreatic cancer 2.5 years ago (still feels like yesterday) but also my lovely dad to stomach cancer when I was the same age as you. They were both the same age as your dad too, so many similarities.

I want to pick up on your dad's positivity and plans for the future. FANTASTIC! To me, that's the right attitude. My hubby, diagnosed as advanced stage 4 actually convinced me he was invincible, despite a terminal prognosis and I'm sure that's what helped him. He survived 14 months, 9 of which after diagnosis were just brilliant and you'd never have known he was ill. When it was his time, he deteriorated and 8 days later joined my Daddy upstairs. My son and I both feel, given his diagnosis, that we made the absolute best of it.

You express concerns that your Dad might not be offered chemo. Everyone is different and chemo is of course not for the faint hearted but there's still hope. I think he'd have to be pretty poorly for them not even to try.

My advice for what it's worth? Push for the oncologist appointment and perhaps ask his GP for a short dose of steroids to promote a sense of well being and appetite, as well as anti sickness medication. My hubby was on Metaclopramide (spelling?) which not only helped with the sickness but emptied his stomach quickly, meaning he became hungrier, faster. I managed to get 4 stone on his before he crossed the divide.

Whatever happens, your Dad will ALWAYS be with you and your sons. Just in a different way in the end. I constantly talk to my hubby (even when I'm out shopping, I just ignored the strange looks!) and I know he guides me as I carry on for both of us.

Strength to you and purple hugs xx

Charlie81
Posts: 11
Joined: Mon Jan 21, 2019 5:06 pm

Re: loosing hope

Postby Charlie81 » Sun Feb 10, 2019 11:53 am

Hi all,

Sorry I have been off the grid recently. I have been round at my dad's a lot and then there is a lot to do with two small children but I wanted to thank you all for your replies. I really appreciate you taking time out of your day to encourage another. It's one of the only beautiful things in this journey; the kindness and compassion of others. It makes me feel part of a journey with other people (less alone) and its wonderful to see the kind and brave side of humanity. My dad wants me to go to do a few jobs with him today so that is a good sign. I would like to reply to you all in turn.

J9kpr - thank you for your response and I am sorry that your family is also going through this. I really liked what you said about drawing strength from our love for one another. I also agree that children help. I know that I have to make sure they are still having attention and happiness during this time and that gives me permission to take time away from the situation without feeling too much guilt because they are also important. Plus just giving them a cuddle helps.
I totally understand about the devestation that you and your mum feel about the potential that she will not be here to see your son grow up. This is also a big sadness for us. I hope that it doesn't work out that way, and that she beats the odds.
I also hope that my dad gets some chemo as people do seem to say that once you have a team around you it can feel easier. Wishing you many more happy years together and sending you love and strength. xxxx


kate2101 - Thank you; it really touched me that you spent time to think about it.
I do hold onto what you say. I would pay this price to have had my dad in my life than to have not had him. I know that I have been blessed with him and when I am feeling stronger I know that the lessons he has taught me in life will carry me through. The key ones being bravery and having fun in life. My Dad has always found joy in the simplest of experiences and I will use his example to get through life if he does have to leave us.
I am so sorry that you must feel like all your hopes and dreams from two years ago are now less certain. It's so unfair. However, I pray for you. It sounds like things are going in the right direction for you and I met a woman on line called Lois and she has seemed to respond to treatment like you and she is five years down the line - holidays, winning golf tournaments etc. I very much hope this will be you. I am also saddened to hear you feel guilt. I think that is part and parcel of being a Mum!! But I am sure you know that you have nothing to feel guilty about, no-one would willingly chose this. Thank you for your story of hope. It was wonderful to hear. xx


PCUK Nurse Jeni - I did not know about Winston's wish and I will look into it. Just to say that I have spoken to the nurses in the past and I think you do an amazing job. I will be fundraising when I have the time. Right now the priority is my Dad but when things settle down. I am going to support the wonderful job you all do.


Proud Wife - thank-you for responding. I am sorry that you are living life without your husband. I have no idea how that feels but if I try to imagine it, then I imagine that there is always a gap in life but I hope that around that gap there is still a beautiful life. I think that maybe its like a jigsaw and that there is a piece/pieces missing but that I hope the rest of the picture is still beautiful. If that makes any sense. I guess I haven't experience true loss yet so this is me guessing and hoping that you can still find joy in the rest of the picture.
I have to agree I do like it when we plan. It is a wonderful feeling to continue imagining the happy times, and then to hear of hopeful stories and think, just maybe we will do that. I am glad that you and your son look back on that time with some fondness and that it wasn't all sadness.
Also thank you for your advice, I will look into all of that, especially the metaclomopromide as I know they are not keen to give him steroids. Thank you for saying he will always be with me and there is truth in that as I pretty much know in advance what he would think/tell me/nag about so I will always be able to consult him in a way when he does leave us. Sending you and your son, all my love xxx


love to you all xxx