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


Dandygal76
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Thanks, PW, for sharing DG's good news, she must be exhausted. If you read all the threads on here you would think they are all about different illnesses. I don't know what's worse - the disease or the treatment.

Chin up, DG, and fight another day.

Much love, Mo

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So the roller coaster ride sadly continues. Please note the words poo poo are mine and not Leigha's.


Latest update:-



Hospital ceased all supportive measures. Now he his going downhill fast because he is not getting their help. It is the elephant in the room I said, everyone rejoicing at how well he looks but no one wondering why it happened to start with. And now, without the help of the hospital it is turning poo poo again. At least he is there though and will sort the drips again etc. It is the dehydration that makes him feel so awful. x

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Massive, massive respect to PCUK who have now lifted DG's ban in light of circumstances. I will no longer be posting any updates, that's for DG to do as and when she's up to it I am very aware that DG has been so supportive of others despite her own family's fight so it's now payback time! Thank you so much PCUK x

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Dad is bad. And it is not usual PC symptoms (are their any usual PC symptoms). The main issue is massive headache which is constant. If he moves his head he is sick. If his head stays still he feels no nausea. If he looks right he can see, otherwise he is blind. The medication is barely touching this. I know it is clutching at straws but he did crook his neck bowling at new year and this seems progressively worse since then. But I have been told that when cancer is in the brain the first thing they ask is any pain in the neck. What came first... the chicken or the egg. It is rare I know for PC to go to the brain but we will have MRI results today... the only place I have not had scanned. It is just mad. He went to NHS oncology appt last week, all set for Folfirinox. They were all amazed. The cancer clinic manager even e-mailed me and said how well he is doing. There is no old cancer left but whatever it has mutated to has come back with a vengeance I think or perhaps, hopefully, the treatment has caused something else.


I just want him out of pain. I have already said to my family that if this is in his brain then we need to stop and get him to the hospice. I could push for and probably succeed in getting more chemo but at too much of a price for him. If it is something else we can fix then I will be back all guns blazing (because dad will want that). He was supposed to be at nano on his pancreas today. I have so many thoughts going through my head of how I should have got him to do this differently. Should we have started with Forfirinox? And I must remember all those times I have preached to people that there were no right answers and hindsight is a wonderful thing. Look at me thinking this... we killed the original cancer and Folfirinox has done that rarely on its own.


And to lovely 'S' that follows us... i get totally what you are saying. I am tired and I want to have a day when I don't have 25 pages of pancreatic cancer up on my laptop as well. I really get it. x

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Yay, welcome back DG, you've been missed!

I so hope your dear Dad's situation has calmed again, he's had such a bumpy ride this past week.

Love and hugs

W&M xx

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I just did a long post of what is happening but it did not post and it is pointless now. Scan results back. It is in his brain. Only place I did not scan as so rare. We are done.

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So sorry DG...there are no words. Be with him now, be his daughter and not his Boudicca. You can't say you haven't given it your best shot.


Loads of love as you face this next chapter.


Vx

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Feeling so sad for you at the moment and sending wishes of strength and fortitude as you face this new and ghastly challenge.

Much love to you and your family and wishes of comfort and peace to your Dad

W&M xx

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I HAVE JUST DELETED MY POST AS I SAID I WOULD. MY SINCEREST APOLOGIES IF I OFFENDED ANYONE. I "SPOKE" WITH RAW EMOTION YESTERDAY, NEEDED TO OFFLOAD AND POSTED BEFORE ENGAGING BRAIN. OF COURSE THERE IS HOPE. I JUST WANTED HIM TO BE ONE OF THE LUCKIER ONES, THAT'S ALL.


AGAIN, I AM REALLY SORRY. NEXT TIME I MIGHT TRY TO THINK FIRST. XXXX

Edited by Proud Wife
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This whole thread is a tribute to DG and her family. Nobody on this earth could have fought more bravely than DG and her dad.


Thanks PCUK for allowing access to DG.


Thanks PW for channeling for a few days. Please don't stay away, I can understand that this news opens up scars but your experience and wisdom is invaluable to us.


DG, stay with us. We care about you and will continue to support you.


Love, prayers, hugs - the whole damn lot.

Mo

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Welcome back DG and I am so sorry about your Dads news.....this evil cancer never stays still long enough for us to relax it just marches on relentlessly. I am thinking of you and your Dad and the family .

Elaine

X

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Dear DG,

This is shocking. It happened so quickly.

I can't help but cry. I was so inspired by your story. It felt like you could move mountains and that your father would definitely succeed. I am so sorry.

Wishing you strength for what's to come.

Big hug,

x Stepuha

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Darling Dandy,


You have been so very kind to us all and an inspiration to many. I want you to know that we love you, warts, swearing, and generally rattling cages and all, every bit of you and you must never let anyone devalue the contribution you have made to this forum and more importantly to your Dad. You told him you would fight for and with him as long as he wanted to fight and you did, you were the best. No one could have done more.


Support now has a different focus but I know that you will approach it with calm and dignity to make sure that every hour is as good as it can be for your Dad. You will make sure he can move towards his final release and sleep in peace, knowing that you will let him go when the time comes and carry his genes of courage and strength to have the best life for yourself and those you love.


Louis asked me just before the end what he must do to pass and I told him that no one told us how to be born or how to smile or how to cry and he would not need any help to go. When the time comes Dad will know what to do and will go to another room where he will have release from his pain. The cancer will not have won, your Dad has lived a full life, has seen things, done things, made a difference to those around him and will not be defined by his illness.


Go gently now Dandy, we are with you and will be here in the wings keeping vigil with you.


I wish you and the family love and peace xxx

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Dear DG my heart goes out to you, you have gone above and beyond with your love for your dad and he know this. My thoughts are with you and your family.


Marmalade what a lovely post.x

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Thank you all so much.


PW, you know I love you... please delete your bit today. Yes, it is pants but I agree with Sones, people need hope and we cannot give them much else so why not give them that.


I am exhausted... it 4am in the morning and guess what I am doing? letter writing. Don't take this as the whims of a desperate daughter. We have a lovely Miss S that follows us and lost her mum and I really fricking get it. I am also tired and I don't want to have 25 pages of PC research on my computer. I want to do normal things again. However, my dad is at probably status 0 after I did what I do. He says 'they are talking tiny, it is only a small met to the brain' and onward he wants to fight. Me, I feel done but it is his life. There is something going on with his membrane as well. I am just so so tired. And now, they will have to be very firm to give a clinical reason not to treat with Folfirinox.


I told my son today I thought grandad is going to die.. It was the worse thing I have ever dealt with in my life.


Anyway, apparently we are not done. A lesion on the brain is no different to is spreading to the lungs. And he is right... it is just another organ.


At the end of the day, he is at 0 status so he is good and not suffering. I think I am over tired. x

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Quickasyoucan

Dandygal you don't know me but I have followed your story and my 83 year old dad has stage 4 of in uk. I am not up early I am in Australia which makes supporting dad v challenging. I just wanted to say courage mes braves to you and your dad. Dad's oncologist told him this week without a scan that he thinks tumour is chemo resistant due to dad's lymphedema and suggested dad give up after one cyle. My brave dad has chosen to continue chemo and wait to see what the scan says when we finally get a date from nhs rather than giving up on a supposition especially as oncologist said he could be wrong. Your dad is a fighter as are you and my thoughts are with you and all on our collective journey.

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thank you


I have taken the swear out but I just messaged PW and Marmalade this.


I feel !!!!... I want it over now. How bad is that. Henry (9) said to me this morning that it will be good when grandad dies because I will be less stressed. Then he asked me who will decorate his bedroom when he dies. I just blew... i said YOUR GRANDAD LOVES YOU AND HE DOESNT WANT TO !!!!!! DIE. I was the worse mother ever. He left the house in tears. My sister (who is a head teacher) said it is a life lesson and that he just has to deal with it. I felt awful and told the school what I did to make sure he was okay. They were great. They pulled him out to talk to him and he sobbed apparently. He is the loveliest boy and he has lost his mum. I am so tired and I cannot sleep I am just all over the place. I am about to go out for a run and it wont help.. x

Edited by Dandygal76
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Quickasyoucan

Take care of yourself I am sure you are as good and competent a mother as you are a devoted daughter. The feeling of wanting it over is a normal emotion you are runnng a slow motion marathon.

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