So frightened for my Dad

[kateeighty8]

Hello all – since my Dad was diagnosed with Pancreatic cancer on 16th August, I have been reading a lot of the posts on this website, and have been both comforted and horrified by the heartfelt accounts of this terrible illness.

Nine weeks ago, my parents were on holiday with us in Crete and my Dad appeared to be a fit and healthy 74 year old, playing volleyball in the pool with his grandchildren. Since then we have seen him deteriorate at an alarming rate, losing practically all his appetite, becoming extremely weak, and losing over four stones in weight. Today he cannot even stand up from his chair unaided and is in a wheelchair.

The doctors originally thought he may have a stomach ulcer, but the emergency endoscopy took too long to take place and he became so weak that on the advice of the GP we took him into A&E, where he was admitted and a few days later was given the scan that showed the cancer in his pancreas, with further ‘shadows’ in his liver. We knew of course then that he was in a very serious situation indeed.

On Tuesday he went to his first oncology appointment, where he was told that no treatment was going to take place. They told him that chemo was not going to help and that there was nothing at all they could offer him. The advice is to keep him as comfortable as possible at home, with whatever physical support the NHS can offer.

As a family we are devastated. I think Tuesday was the worst day of my life. I needed to support both my Mum and Dad, but I felt useless and numb. I had to tell all three of my daughters that their much loved Grandpa has months, possibly weeks left to live. I listened to my mum and dad talk about end of life care and funeral arrangements. I can’t believe this is happening, and that it’s all happening so quickly. The hospital won’t give us any narrower estimation of life expectancy than ‘weeks or months’ and I can’t understand that – is that normal? I know it’s difficult for them to estimate but I’ve read about so many people on here who have been given a better idea than that, I just don’t know.

I don’t know what I’m looking for by writing on the forum, but I feel very lost and felt that I needed to reach out.

[Birchen]

Oh Kate how dreadful for you and your family. I have not posted on here for a while but I know how shocked you must all be. We had the same news in 2013 after a family holiday and nothing at all prepares you for it. My husband had a tumour in the tail of his pancreas but with numerous nodules in both lobes of his liver. He did have chemo, which he tolerated really well (Gemcitabine/Capecitabine) and he lasted for 6 months. His oncologist did give him a time frame of between 3 and 6 months. During the 6 months he played lots of golf and we had lots of family time. It might well be worth asking whether your Dad could have some chemo to give him more time. On a more positive note we found our local hospice was brilliant in helping with discussing medication and just listening to us as a family. I hope you get the help and support you need. Take care Lyn

[kateeighty8]

Thank you so much Lyn for reading my post and for your kind words. I'm so sorry to hear that you lost your husband and I'm sure you must treasure the last months you had with him. As I understand it, there are different types of pancreatic cancer (I'm new to all this so I don't have specifics), Dad's oncologist told him that he has the worst one and that no chemo would have any effect. I think also because Dad is so weak he may not have been fit enough to be considered for it. In some respects, I'm glad it is something he won't have to go through. It seems all we can do is take care of him and give him all the love we can for however long he has.

Thanks so much again xx

[MSH]

Hello Kate, I'm sorry to read of your news, it must be devastating for your family. You're right there are different types of pancreatic cancer. The majority are adenocarcinomas, but a proportion are neuroendocrine which are easier to treat. Then you can get uncommon types such as squamous cell. Within the broad adenocarcinoma group there are many different forms of genetic change which determines just how aggressive a tumour might be or how they might respond to treatment. It seems your father's disease is very aggressive. Chemotherapy can be quite toxic in itself, and the concern would be that rather than helping, it might blight those weeks he has left. The emphasis now should probably be on symptom control.

Mark

[Ant11]

Kate,

Welcome to the forum where nobody really wants to be. One thing for sure though you will receive a lot of help and support from the lovely people who regularly post with tips and helps. It's like an extended family and with some good news and the sad times they all stick together. I would also suggest you give the support nurses either a call or email as they have so much knowledge and expertise which you will find "priceless" Just remember too you are never alone.

[Ant11]

Kate,

Welcome to the forum where nobody really wants to be. One thing for sure though you will receive a lot of help and support from the lovely people who regularly post with tips and helps. It's like an extended family and with some good news and the sad times they all stick together. I would also suggest you give the support nurses either a call or email as they have so much knowledge and expertise which you will find "priceless" Just remember too you are never alone.

[sheena]

Hi hope all is well for you and your dad.my hubby was diagnosed in March .was also very weak due to a lot of weight lose .but we decided to give chemo a go ,on the conditions if it made him to ill then he would stop.was put on gemzar as oncologist reckoned he couldn't cope with folfrinox .He has been on chemo for 3 months now, we know it isn't a cure just to prolong his life, but he has coped ok on it .

[LMD]

Dear Kate

So very sorry to read about your Dad's diagnosis.

This website and forum are an invaluable source of information and support. The specialist nurses are amazing, so helpful and kind - do call them if you need or would like to speak to someone.

Hope your Dad is comfortable and that things improve. Thinking of you and your girls xxx

[allyc1]

Kate, so sorry for your news this week. It's absolutely devastating. My dad was diagnosed back in Nov which was treated with chemo, but the last few weeks he has has problem after problem which has caused for him to have no treatment as so weak and tired! He was told on Monday that it had spread to his liver! He is besides himself so withdrawn and constantly crying and it breaks my heart to see him like that. Please keep in touch and let me know how you are Sending you a big hug xx

[belgrade]

Hello Kate,

Your post has really struck a chord with me and I am so sorry to hear about your Dad. My husband first displayed symptoms following a family holiday in Crete in September 2012, but we didn't realise there was something seriously wrong until he became jaundiced on holiday in Tenerife in April 2013. He was admitted to hospital for tests when we returned home but wasn't diagnosed until June 2013. Sadly, he too became extremely weak, couldn't eat and lost over 7 stone in weight. He couldn't have chemotherapy but in his final days he received effective palliative care and passed away peacefully and pain free 7 weeks after diagnosis at the age of 61. He had Chron's disease and had been diabetic for over 15 years, which we now know put him at a greater risk of P C. He deteriorated very quickly, but others on the forum have been lucky enough to still lead active lives and have coped very well with chemotherapy and other treatments. If there's one thing I've learned about PC, it's that people are affected differently. Never give up, there's always hope, but make the most of every day you have together.

My heart goes out to you,

Hilary

[kateeighty8]

I am so overwhelmed by all the replies and kind words from everybody here - thank you all so, so much. It seems I have a lot to learn about this horrible illness. Although it is a comfort to know that my family is not alone in going through all this, it saddens me so much to think that others are suffering too. Ally, I so hope that your Dad is able to come to terms with his situation and finds some way to make peace with it, it is so heartbreaking as you say to see someone you love in such desperation. I'm sure your love and care will mean the world to him. Hilary, how strange that our stories are so similar, I'm so sorry for your loss. I am very much afraid that as the oncologist will not consider chemotherapy, Dad may too have a very short time left, and we are indeed trying to make each day as special as possible. Yesterday he had quite a good day and was even able to have a short trip out with my Mum, who is coping so well and is nothing short of an angel with him.

It has meant so much to me to read all your kind messages and share your experiences too, I will let you all know how things go. What a terribly cruel thing this cancer is. Thank you,

Kate

[Guest]

Hi Kate,

Your post struck a chord with me also. I just had to message you.

I am so sad to read about your Dad. I know how alone and frightened you feel. My Dad was diagnosed February 2014. After many misdiagnosis. His cancer was in the body of the pancreas and spots on his liver. Dad had also lost 4 stone in weight. The Oncologist told me he had about 6 months. When they say that, you seem to think it will be to the day. I felt like I was counting down. Dad was fortunate to have chemo, and he did tolerate it quite well. He suffered more, at the time, with very severe diarrhoea. Sadly though, my lovely Dad passed away April this year.

Do you know what medications your Dad is taking?

Have you called the nurses in this forum? I promise you, it is absolutely worth calling them. They will give you amazing advice and you will learn a lot, which you really need with cancer. It is so evil, all the advice and information you can get, will benefit you and your family, I promise. Please give them a call.

Also, please don't be afraid to call people and push and ask questions. Some medical professionals don't tend to see any urgency, or show care. If you are not happy with something, or just have a question, then you need to call them, and call them direct.

My heary goes out to you and your Dad. Make the most of every minute. Life is very precious.

Leila xxx

[Sueoliver]

Hi Kate,

I am so sorry to hear about your Dad. This illness is devastating for everyone involved. My Mum was diagnosed in May 2014 and was a fit healthy woman playing golf the week before diagnosis! To say it was a shock is an understatement. She was given 8-12 months and is still here. She is strong willed and determined!

Like everyone else has said the nurses on here are great and very knowlegeable you can talk to them about anything!

This forum has also been invaluable to me and people understand!

Take care of yourself as well.

Love Sue x

[kateeighty8]

Thank you Leila for your kindness and advice, so sorry to hear that you lost your Dad. I'm not sure what medications Dad is on, my Mum is looking after Dad and attending appointments etc - she is an absolute star and I'm so proud of her - and of course helping Dad manage his medication. Perhaps it would help me to understand all that's going on if I found out a little more information. I feel that it's my Mum that needs all the support right now but I will talk with her about it to perhaps share the burden. Thank you for writing to me, love to you xx

Thank you also Sue, I can't believe how many people have taken the time to reply to my post and you're all so kind. Yes, the shock is unbelievable, and it just goes on hitting you with numbness, sadness and panic. There's a real feeling of rolling with the punches. I do hope your Mum is comfortable and still feeling strong, she sounds amazing! Love Kate xx

[sandraW]

Hi Kate,

Sorry to hear about your lovely dad, this disease is truly horrendous.

Your mum seems as though she is doing a wonderful job, I looked after my husband too for 19 months he died in April.

I am sure your Mum will need lots of support its a heavy burden for her to carry, I have two sons who are wonderful but live away from our home town, they visited often and phoned daily, but I always felt as though I couldn't get upset on the phone as they then worried more so I put on my brave voice. I did however have a very good friend, who was amazing and let me blubber away on the phone if I needed too. Explain to your Mum that you are there if ever she needs a good cry, doesn,t change anything, but certainly lets some of the stress out, as I am sure she will have her brave face on for your Dad, take care sandrax xx

[kateeighty8]

Hello Sandra, thanks for your message. So sorry to hear that you lost your husband, it's so terribly sad. My sister and I are trying to support my mum wherever we can but at times feel quite useless. Sometimes it's enough just to go and sit with my dad while she goes out for a bit, it is such a full time job looking after someone so unwell and I worry that she doesn't get any time for herself. Of course there are lots of hugs and tears too, and she is very good at talking about things openly. She is so amazing.

Dad is trying to stay positive and get the most out of each day. He is doing a few 'bucket list' things when he has the strength, which is both a joy to see and heartbreaking in equal measures. I have told my almost grown up daughters that they need to get on and think about their own bucket lists NOW because all of this really has shown us that life is so precious and we need to live every day to the full while we are fit and healthy. Dad's enthusiasm is as contagious as ever and he is inspiring us all. He has shown that no matter how physically weak you become there are still things that can give you joy, and with the help of good friends and family these things can be achieved.

I hope you are all well. I think about all your stories and advice every day and it gives me strength. Thank you x

[Marieb]

Hi Kate

So sorry to hear about your dad. For many of us the story of misdiagnosis is very familiar and one that I can personally relate to. It makes me so mad that this is considered to be a silent cancer...I wasn't silent, I was complaining with the key symptoms for months!

I am so sorry to hear that your dad has so little time but you sound like a really close family. Make the most of your time together, it is very precious.

I was lucky to be offered Folforinox as I am young and fit but it looks like even for me it's proving very difficult.

take care of yourselves, and thank you for taking the time to reply to my post...its great to know that there is support out there through all of this.

Marie X

[kateeighty8]

Hello all, sorry I haven't posted in a while.

Just to let you all know that my Dad passed away peacefully yesterday morning. He remained at home throughout, surrounded by family and cared for and loved to the end by us all, particularly my wonderful Mum who has done everything she possibly could for him. She attended to his every need 24 hours a day, barely sleeping, keeping him comfortable, fighting his corner when needed with the occasional unhelpful professional, protecting his dignity, helping him to make the most of each day, and of course simply loving him.

I cannot explain how much Dad will be missed and how difficult it is to believe that he truly is gone. I'm simply heartbroken. I am so pleased that he went so peacefully, with no pain, cherished in his own home. Pleased too that we all had the chance to talk properly with him, tell him anything we wanted him to know, share our tears and laughter with him, and those last important hugs and kisses.

Both the Macmillan and Marie Curie nurses were marvellous, so supportive and knowledgeable, a real source of comfort to my Mum.

As a family we have become closer, and our focus now is on supporting my Mum and looking to the future, while keeping Dad firmly in our minds and hearts.

Thank you to anyone who has replied to my post, you have all been so kind. All your advice and good wishes have made a very real difference to me. I hope that sharing my experience has helped others to feel less alone too, and I would encourage anyone to join in the conversations here. I certainly will continue to follow your stories and hope to contribute if I can be of any help in return.

Much love to you all.

With great sadness,

Kate

XXX

[belgrade]

I'm so sorry to hear that your Dad has lost his fight, but glad that it was peaceful and in his own home. I lost my husband to this cruel disease just over 2 years ago and don't know how I would have coped without my 2 daughters. Your Mum will need a lot of support and understanding in the coming weeks and months, sometimes very hard when you yourself are grieving. Your Dad will never really leave you as you will always carry him in your heart. My thoughts are with you and your family.

Take care,

Hilary x

[Marieb]

Hi Kate

I am so sorry to hear of your loss, from your words it is easy to tell that you loved your dad very much. pancreatic Cancer is so cruel but it at least sounds like he had a peaceful death. I lost my mum last year, she had a condition called Sjogrens Syndrome, it isn't normally terminal. She went into hospital for what we thought was something minor and 10 weeks later we lost her. In her final days she was looked after by MacMillan nurses and like you we were able to be with her night and day.

I will always be grateful for that time and the way she was supported to die well with the people she loved.

You and your family are in my thoughts tonight.

Marie

[WilliamS]

So sorry to hear your news Kate. Thinking of you and your family.

[sheena]

So sorry to hear your news x

[Sueoliver]

Dear Kate,

I am so very sorry to hear your news. Take care of yourself and your lovely Mum.

Thinking of you all,

Love Sue xxx

[jay]

I am so sorry Kate, thinking of you and your family,

love Jayne

x

[sandraW]

Kate, I am so sorry to hear the sad news you have lost your lovely dad, but its good it was so peaceful, and that you all had the time to be together as a family and say your goodbyes.

I am glad you got the support you needed from the nurses, they on the whole do a marvellous job.

Your dad's decline was obviously very quick, and you must all still be trying to come to terms with that, as well as the shock of loosing him. I am sending love and strength to you all, and I hope the latter memories are soon forgotten, and your memories become that happy time, of him playing volleyball on his holiday with his grandchildren just a few short weeks ago. take care, love sandrax xx