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Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Thank you and our story... but we are not that far yet!

Postby Dandygal76 » Fri May 06, 2016 9:54 pm

With the review of my posts and the latter responses I feel like I offended everyone other than PW. I am sorry for that. I was not my best but I have a good heart. You will all get out the other side of this, I promise, and I wish you all the best. x

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Thank you and our story... but we are not that far yet!

Postby sandraW » Sat May 07, 2016 12:45 am

Dandygirl, I do not feel in any way offended, and I am more than certain you have a good heart, and that you are just trying to do the very best for your beloved Dad and help anyone else you can along the way. Please don't feel the need to step back from the forum ( I read the post on Mark's thread} you posted with the best of intentions I am sure, and I for one need to know if your Dad manages to build the new bedroom for his grandson, take care love sandrax

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thank you and our story... but we are not that far yet!

Postby Wife&Mum » Sat May 07, 2016 9:28 am

Hi Dandygirl,

I'd be really surprised if people took offence over your posts so please don't feel you have to stop posting unless you have other good reasons to stop. This Forum needs posters like you so I do hope you will stick around for as long as you want.

I was so pleased to hear about your Dad's good CT results and wish him continued good news for his treatments.

W&M xx

Fifi

Re: Thank you and our story... but we are not that far yet!

Postby Fifi » Sat May 07, 2016 10:39 am

Hi Dandygirl,

You have have done absolutely nothing wrong at all and neither have you wife & mum. This forum needs people like both of you. I know myself when my Dad was poorly, I would have welcolmed any advice and help I could possibly get, if I chose to listen to it then that was entirely up to myself. If I was getting no help, I wouldn't have continued to be here. Please both of you, please still post. You both need support and it saddens me you feel this way. Everyone needs support here, whoever they are, whatever their circumstances. We do not have to take advice we don't feel is 'helpful' to us, and to our situation. We post 'helpful' things because we care and want to help our loved one.

Leila xx

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

Re: Thank you and our story... but we are not that far yet!

Postby Proud Wife » Sat May 07, 2016 4:17 pm

Totally agree with everything Leila has just said.

Leila, you are spot on. I too welcome any advice, whacky or otherwise. Whether I will take it is another matter but as I said before, knowledge is wealth and when you are literally fighting for survival, you never know, one comment here or there may...just may....make a difference.

D76, whatever you do, please continue what you have been doing because you are far ahead of me in terms of research!

xxxx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Thank you and our story... but we are not that far yet!

Postby Dandygal76 » Mon May 09, 2016 10:25 pm

Thank you so much for taking time out to deal with my precious ways. I am not in the thick of it as you are.. we are in a good place. I had no right to throw my rattle out of the pram. I again wanted to delete my comments... but I have not. It will not be my last emotional response. I think we are a relatively small circle of support. My responses are my responses... this whole thing is crap to be honest. x

Fifi

Re: Thank you and our story... but we are not that far yet!

Postby Fifi » Mon May 09, 2016 10:34 pm

Lovely to see you back Dandy. You haven't thrown your rattle out your pram! You are hurting. Your lovely Dad has been diagnosed with this dreadful illness, and you are hurting. Just like we all are.. You should not have been made to feel the way you have.
It might not have even been intended for you. I myself was incredibly sensitive when my Dad was ill, and I left for a while, but I know I needed to be here. Was sad really, the lovely lady that thought she has caused my leave, really had nothing to do with her, it was someone completely different.
You need to be here Dandy. You are fighting for your Dad's life. I know for certain, if I hadn't found this forum, my Dad would not have survived as long as he did, I truly believe that. I never had the confidence until I came here.
If someone, anyone, doesn't agree or like you what you write, we do not have to reply.
This forum is incredibly precious, so much more so for people like yourself who are sadly going through this. I have been there, I know how you desperately feel.

Leila xx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Thank you and our story... but we are not that far yet!

Postby Dandygal76 » Tue May 10, 2016 9:57 am

Oh Leila... it really is a bitter pill at times and very unfair on a man who has really looked after himself. Saying that, it is of course unfair on anyone who gets it! Sometimes it just gets a bit overwhelming. My dad has always been such a strong man but he sorted out his fishing gear last week on his week off and did not make it yesterday now he is back on the chemo. He said he feels crap and he was better feeling crap at home. I replied that is great... keep the positive thinking up and his was reply is that he feels 'positively crap'. Ha ha! Not! I am so sorry you lost your dad, I can't bear to think about it but we are not in that place yet and we need to live for today. What really scares me is how people seem to turn so quickly when they start losing the battle. I am also beating myself up on when to tell my son the truth and there are 2 firm camps of opposite advice on that one. But, the thing is, although the NHS said it is terminal and 6 months I don't want to tell him that because we have opened up new doors. I want him to finish his GCSE's and have the summer we all had after exams - it was great wasn't it? I have read your thread and posts - I know you had a wobble as well, perhaps it is just part of the journey. Much love to you. x

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Thank you and our story... but we are not that far yet!

Postby Dandygal76 » Tue May 10, 2016 10:03 am

Sandra - I am not so sure about this bedroom stuff to be honest. Dad came round at the weekend, started to move a radiator, pulled all the floorboards up, created utter devastation and then hit a brick wall as chemo side effects kicked in. He ran out the door and left me in chaos and I had to move the bed over the missing floorboards. Not ideal and I am not impressed! Ha ha ha! But, my 16 year old is still nagging him - they have no idea do they. Bloody teenagers. x

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Thank you and our story... but we are not that far yet!

Postby Dandygal76 » Tue May 10, 2016 10:09 am

By the way - does anyone have any suggestions for this awful salty taste my dad is getting and is putting him off food. The trial gave him a mouth wash but then he just gets a medical taste that is also putting him off food. x

PCUK Nurse Dianne
Posts: 286
Joined: Tue Aug 14, 2012 3:29 pm

Re: Thank you and our story... but we are not that far yet!

Postby PCUK Nurse Dianne » Tue May 10, 2016 10:19 am

Hi Dandygirl,

Thanks for your posts and 'sticking with things'. You mention the salty taste in Dad's mouth, I wonder if he has tried some of the herbal teas, ie lemon, ginger, or even lemon and ginger drinks. Ginger ale, or ginger beer especially as they can be quite 'cleansing' in the mouth and ginger is also good for nausea. If he finds they may be a bit overpowering due to the effervescence,just let the bottles go a little flat. Also boiled lollies can be very good for stimulating saliva and may help with the salty taste too.

I hope that helps and of course would be interested to hear if there is an improvement with this.

Dianne
Pancreatic Cancer Specialist Nurse.
Pancreatic Cancer UK support Team

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Thank you and our story... but we are not that far yet!

Postby sandraW » Tue May 10, 2016 12:38 pm

Hi Dandygirl,
Just reading your posts about telling your Son, you will be surprised at just how much they pick up, our grandson was 14/15 our granddaughters 9/10 and 6/7 and they obviously knew that granddad was poorly. Then we explained that granddad was not going to get better, but hopefully he would be around for a long time, but that he would not get better. Our grandson asked one of the teachers at school about PC and she said she would look into it for him. She then explained that the outcome usually was not good, he obviously didn't want to upset us by asking us about it. but did mention that he had asked at school, he didn't look into it himself though. As my husband deteriorated which happened quickly, they knew that granddad would not want to be ill, and the two older ones saw him for the last time 6/7 days before he died. Strangely enough our granddaughter was the one who wanted to see him in hospital, our grandson didn't, but even though I told him he didn't have to go in to see granddad, as his sister did I do think his hand was forced if you understand, but then he wanted to visit again the next day which he did. My husband was still "normal" at that stage although in pain and jaundiced, they then made the decision that they didn't want to see him again,
which was what we wanted, but let them make their own descion, the younger granddaughter was away on holiday, by the time they returned, we decided it was best not to take her to the hospital as it was a 4 hour journey from home.
I must admit our grandson (actually step grandson, as apart from my son, my husband was the first other stable man he had in his life) was totally devastated when his granddad did die, but he carried his coffin into the crematorium, at my husband's celebration of life, and both granddaughters stood up together hand in hand and spoke about their granddad and how much they loved him.
It's a year now since we lost my husband and they can now smile when they talk about him, which they do all the time and they all have a pendant which they wear everyday with granddad's photo etched onto it.
Of course what you decide to do is a totally personal matter, and I understand about his exams, we didn't have that problem, but I would be surprised if you son hadn't already picked up on how worried you are, and in a way started to put things together in his mind, what ever you decide its the right decision for you, take care sandrax xx

Fifi

Re: Thank you and our story... but we are not that far yet!

Postby Fifi » Tue May 10, 2016 8:27 pm

Hi Dandy,

My Dad was also given 6 months, and at first I was on countdown, I thought it would be to the day. But Dad was amazing and he fought so very hard for his life. I cannot imagine what the patient must go through in their mind, I guess we would never know. If your Dad trusts you and is happy for you to take over, then I would do just that. They have enough to think about without everything else. Dad's emotions were just the same, he would be feeling crap and just feel so very down, and then the next hour he would be feeling a little better.

With regardsto telling your son, I think Sandra's advice is very good. I don't have any children, but I think at your son's age, they would just take it in their stride, I think I would have done at his age if it was my grandparents.

Leila xx

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

Re: Thank you and our story... but we are not that far yet!

Postby Proud Wife » Wed May 11, 2016 6:19 pm

Ah I've found that post D76 and it was rattle not dummy. You didn't throw your rattle out either my lovely! The only thing precious about you is the fact that your are a precious daughter, wife, mother etc to your family.

I'm sorry to hear that your Dad's not feeling super. You'll know how I feel about carrying on with chemo now but to my line of thinking, there's a huge difference between first line and second line chemo and you just never know, if your Dad's not getting a placebo, the new drug may be just the miracle drug we are crave for. He's got to keep at it! I remember Ruth saying she would be her own statistic and I think that's absolutely right. I hope and pray the treatment will give your Dad some quality time and you can all say it was worth it. We can and you will, especially on the days he's not feeling so crappy.

Please don't let the news of anyone's decline dampen your dogged determination as everyone is different.

With regard to your son, forgive me if you've already said but what does your son know about his grandad's illness. Does he know he's having chemo? Does he know it's PC? If he does, I bet you he's googled everything.

Keep up the spirit xx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Thank you and our story... but we are not that far yet!

Postby Dandygal76 » Wed May 18, 2016 11:55 pm

Sorry PW, stayed off this post for a while. And, thank you so much Sandra nd leila for your response, your voices of reason have really helped me settle things in my mind. I have been sneaky... the moment I googled PC and saw the horrible crap that came up I was on the ball. I wanted to say it was bowel cancer (much better outcome) but dad would not have any of that and so we went with stomach cancer (50:50 chance). The 4 grandchildren would have googled stomach cancer. I know there are rights and wrongs of that but my son is now smack bang in the middle of his GCSE's. There is also some warped outcome of this in that my dad spent so much time on his education that my son wants to do him proud now.. he is studying more than most of them! I want him to have this summer.. that magical one after exams, plans for first holidays away, new girlfriend etc. I just don't want to tell him to be honest. I am not in the place of NHS saying is imminently terminal, I think we will prove them wrong. So how do I tell him what NHS said when to be honest i think they talk crap! Probably not on the whole but they were quite negligent in their approach for PC with dad. It is trained into them. Please do let me eat my words on this. This will be a successful thread! x
Last edited by Dandygal76 on Thu May 19, 2016 1:01 pm, edited 2 times in total.