scared

[sammyjo]

Hi

I have never written on a website like this before so thought I would give it a go and see if I can learn anything or find peace, maybe just get stuff off my chest?

My dear uncle was diagnosed with advanced in-operable pancreatic cancer 8 weeks ago, and it had already spread to his liver. 2 other uncles, Grandma and Granddad (Uncle H's brothers and parents) both died of pancreatic cancer. He is tired a lot of the time, having to sleep a lot. He is in a fair amount of pain, and his skin is a yellowy grey colour. It is hard to digest, as my uncle has never been poorly...in fact I don't even recall seeing him so much as sniffle with a cold!

Uncle H has decided to refuse any treatment (Dr's say it would only prolong life, not cure the cancer), as he thinks he will have a better quality of life without the chemo. I respect Uncle H's decision, but I am struggling to come to terms with the fact there doesn't seem to be anything anyone can do to help. I know love and support and a positive attitude goes a long way, but I just wish there was something I could do to make all of this stop and go away! Naïve, I know.

My uncle is truly a wonderful man, so strong, so positive - I am blessed to be able to call him not only my uncle, but one of my best friends.

I know no one has real solid answers, but I feel as though I am waiting for the inevitable...I know the eventuality is that he is going to pass away, but I feel like I am sat watching a ticking time bomb with no idea how long it is until it goes off...

I feel so sad and upset, and I wish there was something I could do to help uncle H. I am genuinely scared of this awful disease. I am scared that it is blatantly in my family, taking loved ones too soon.

The only thing I can think of to make any sense of this is that the good die young, because they are simply too good to be here....they go on to a better place where everything is happy and good and the reason we don't get it is because we haven't seen it. I don't know if it makes sense at all but what other reason can there possibly be?

J

[kwaitang]

Hi. I wish I could help you in some way but you have just mirrored what I am feeling. All I can say at the moment is that you are not alone in feeling this way. I too am scared and angry. I think that whenever you feel bad it just helps to write it down and post on here. It may help to relieve the pressure a little. At least on here people can empathise with you. Folk say it all the time but here goes - stay strong for him - sometimes it works, sometimes not. Best regards. Arlene.

[Bee]

Hi J and welcome to the forum, I hope it will bring you some comfort.

All I can say is that you are not alone and everyone her is going through a similar range of emotions. As you say they're are no answers but all I can suggest is my current motto, take each day as it comes and focus on now rather than what lies ahed.

Take care

Bee xx

[Jwilson]

Hi J. You have made a good decision by using this forum as everyone on here is in the same boat. Yes the disease is terrible and you want to sometimes scream why me? Why us? Since your uncle has decided not to have chemo I think the best help you can give is make sure he is as pain free as possible. His GP will put you in touch with a team of nurses, they will be Hospice or MacMillan, whatever their practice works along side. Don't be scared of the name Hospice nurse! In our experience the girl we have been assigned to is just terrific and we can ring anytime. She is the one who is the expert in pain relief and she advises the GP who writes the prescrtion. The yellow colour might be jaundice if the tumour is pressing on the bile duct. That can make you very itchy and you can be more comfortable by taking antihistamine. Listen to expert here, I am not even a nurse but in the last few months I have learned a lot about pancreatic cancer!

I hope your uncle gets good care from people who know what they are doing and that he is not in pain. That's the bit I find so hard, if my husband is in a lot of pain it's so distressing. One of the support team ie the nurses will email you and they are really really good, I hope you get feedback from them soon. You can even phone them directly for help and advice.

Good luck

June

[LindaH]

Hi J,

It is awful and seems so unfair. My father died of stomach cancer aged 60, his two sons died of the same aged 58 & 59.....I'm now 59 ......I didn't stand a chance really of getting away with it.

I beat Breast Cancer in 2007 then just last year before Christmas, Pancreatic came in as a primary cancer....Merry Christmas Linda !!

I have gone down the Chemo path and I am so pleased I did. I can totally understand your Uncle not wanting to endure Chemo, it isn't easy, but I want to live as long as I can. I want to see my 21 year old daughter graduate, I'd love to see her married and would dearly, dearly love to hold a grandchild in my arms, these last two may not be possible....but never say never.

Live for today J with your Uncle, love every precious second, I do and will until my last breath.

((hugs)) Linda x

[welshgirl]

Hi

My mother too had an uncle who died of pancreatic cancer back when things weren't as advanced as they are now, he didn't have chemo either but didn't live for long unfortunately. All the family on my mother's father's side died of some form of cancer so her chances were pretty slim of not having cancer.

Linda, I hope you are doing well, please stay in touch, my post is "mother in a million" you have written a few times and I'm interested in your journey. Good luck to you, my thoughts are with you.

Nia x

[marie souter]

Hi, I am in a similar position with my mom, she was diagnosed on Easter Sunday this year, stage 4 pancreatic cancer spread to the lungs, offered palliative chemo only but refused it...my mom has had a few hiccups along the way down to meds and sickness but she is pretty much holding her own. The only thing I can tell you is what I stick to and have advised the rest of my family who are feeling the same way as you... HE is very much still here, live for today and help him fulfill any wishes in the meantime, take full advantage of the good days, and support him on the bad. My mom hates talking about cancer 24/7 as she feels like all she is seen as is a cancer victim waiting on death row...remember this when you're thinking of his future 'or lack of it'....see things through his eyes if you can, try to think of it as he is living with cancer rather than dying from it...only talk about the cancer if he brings it up, I'm not saying avoid it entirely but I discouraged family from it being the only topic of conversation as my mom felt like everyone was just waiting for her to die and she felt like..hey I'm not going anywhere for as long as I can...only give up on their life when they do...when my mom prays to go then I will too for her sake....I encourage mom to eat well (lots of protein enriched foods as lack of appetite tends to show lack of protein more than anything else) drink plenty, I was honest with her from the start and said the people who die quickly are the people who take to their beds and give up, they don;t eat, they don;t drink, inactivity causes pneumonia, blood clots, more problems with constipation...mom now tries to get herself up and out...of course she has her bad days and I won't lie they are hard...very hard to watch, I've moved in with my mom and been there since easter sunday .. my husband and family support me on this as the way I see it they are going to be there long after she is gone, I have already had so many special moments..I think its also important to try and relay how imperative it is for him to tell family if he feels a decline in his health so the symptoms and cause can be jumped on quickly to keep him here as long as possible...and this is gonna be a rollercoaster...don;t give up on him just be there for him and cherish him as long as you have him...live for today, avoid listening to timescales..(everyone is different) he will go when he goes..this is how I see things with mom, its a terrible time and my heart goes out to you as it would to anyone in these circumstances ... hope this helps xxxx