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Re: My 41 years old husband has inoperable pancreatic cancer

Posted: Wed Oct 08, 2014 12:07 am
by sandraW
Just to let you know I am thinking of you and your husband of course. hope he gets good news tomorrow, and that he gets a bed soon so they can get his pain sorted. sending cyber ((hugs)) take care sandrax

Re: My 41 years old husband has inoperable pancreatic cancer

Posted: Wed Oct 08, 2014 8:44 am
by Sueoliver
I hope everything goes well today. Stay strong. Sue x

Re: My 41 years old husband has inoperable pancreatic cancer

Posted: Wed Oct 08, 2014 7:50 pm
by knutsford4
Ack Susanna, I hope your news is ok today, sending cyber hugs to you all ❤️❤️

Re: My 41 years old husband has inoperable pancreatic cancer

Posted: Thu Oct 09, 2014 11:05 pm
by Cathy
Hi Susanna

Have been thinking of you lots and am hoping and hoping that you have good news, or at least not bad news.

Cathy xxxx

Re: My 41 years old husband has inoperable pancreatic cancer

Posted: Fri Oct 10, 2014 7:49 pm
by wackywacky
Hope your news was good x

Re: My 41 years old husband has inoperable pancreatic cancer

Posted: Fri Oct 10, 2014 11:50 pm
by SusannaUK
Hello All,

Thank you for your nice words and that you are thinking of us.
The CT scan result itself is actually good. They compared it with the July's scan. The pancreatic (main) tumour has decreased in size again. Not too much, just a little bit. The other spots he has are the same size, some of them a bit smaller, but most of them stayed the same size. So that is a good news.
Oncologist now doesn't know why my husband has such a big pain. He thinks it might be something to do with a nerve in spine or something. He now referred my husband to MRI (spine). It will be on Monday. He prescribed steroids to my husband. Also he told him on Wednesday that he can have the 10th Folfirinox. But my husband said that he would like to wait 1 more week, because of this pain and because he has a bad cold. Unfortunately all of us have a bad cold at home, started with the boys, then me, then my husband. So next Wednesday.
What worries me is that the oncologist also said that most of the times the CT scan is behind reality. Which means that the scan shows the picture of that moment, but the pain can be a pre-sign of the tumour growing. This is just so scary!
Tuesday night was quite a nightmare. My husband fell in the bathroom at 4 am. I just suddenly woke up heard him shouting for help. He was brushing his teeth in the bathroom (don't ask me why at 4 am) when he just fell asleep standing. He hit his ribs very badly at the edge of the bath. Since then he has even bigger pain.

In the meantime hospice called that they have free bed, my husband can go in. Now he doesn't want! He said that he worried about me how I will cope, so let's wait a bit. I don't think that there is anything to wait for. I want him to go for 2 weeks to sort out the pain. It is just so hard to see him like this. Today the nurse came to visit us from the hospice and two of us tried to convince him to move into the hospice but still doesn't want... We agreed that next week he will give a day when he moves in. I hope finally he will understand that this is the best for everybody and it is really just a couple of weeks.
So that's the update on us. Good thing, not that good things.

Take care All,
Susanna x

Re: My 41 years old husband has inoperable pancreatic cancer

Posted: Sat Oct 11, 2014 9:22 am
by Slewis7313
Good news on the scan results Susanna. It's interesting that they said the CT scan my be a bit behind what is happening in real time and perhaps indicates that PET scans do have a useful place in the Pancreatic Cancer world. But as said, the scans are positive and confirm that things are being managed and held at bay, even reduced at the original site.

It does sound to be the right time to focus on the pain and (based on what I have read on this forum), the Hospice's are the experts. A two week stop could make such a difference to both his quality of life and your concerns. Hopefully you can convince hubby to take them up on the offer which will hopefully put him in a stronger place to move forward with the fight!

Whatever is decided, The current results look good and I hope the pain issue is resolved as soon as possible!

Steve
X

Re: My 41 years old husband has inoperable pancreatic cancer

Posted: Mon Oct 13, 2014 10:55 am
by The Isle of Skye
Hello Susanna


The other evening unable to sleep I got up through the night and went online to find some help, answers, advice that might help ease the pain. As I was searching I came across this caring and supportive forum and read your post. I was so deeply moved by your situation and cannot imagine the grief that you and your husband must have injured these past few months in trying to come to terms with his diagnosis. You have remarkable courage and strength, both of you. A precious time for you to be together and as a family that must be difficult when your husband is experiencing so much pain and discomfort. I have spent the past few days continuing to search for pain relief and have found a lot of information that I have downloaded you may too find useful, certainly seems to have brought relief to others. I can send you the information through email to look at if you would like to get in contact.

My email address is {email address removed - moderator. Please ask us if you wish to obtain it}

(I'm new to the forum but couldn't see anywhere that I am not supposed to include my email address in a post. I'm sorry administrators if this is not the case).


Best Wishes to you Both
Fiona x

Re: My 41 years old husband has inoperable pancreatic cancer

Posted: Mon Oct 13, 2014 5:20 pm
by nikkis
Hi Susanna,
So glad to hear the scan was ok, paul has periods where his pain gets worse but there is never a reason found, and then things get better, but pain is always an issue for him to some degree, and as of the last scan nothing has ever grown since he started chemo August 2013.
The hospice sounds a good idea, and I can understand him not wanting to leave you and the boys, but if they sort his pain out things will be much easier for you as a family. Our local hospice used to let Paul come and go, so he would have some nights there and some at home, I wonder if there is some sort of compromise he would feel happy with if he still doesn't want to go in,

Best wishes,
Nikki

Re: My 41 years old husband has inoperable pancreatic cancer

Posted: Tue Oct 14, 2014 12:38 am
by SusannaUK
Thank you for your posts Steve, Fiona and Nikki.

Steve, I am sorry for my lack of knowledge. Is PET scan similar to MRI scan? I will search it on the internet when I will have a little time.
My husband had an MRI scan this morning, they looked at his spine because the oncologist would like to find the reason of this strong pain.

Fiona, thank you for your intention to share information about pain relief. I will send you an email tomorrow. Thank you for your nice words about us. I've been trying to do my best, it is really hard, but unfortunately most of you know exactly how hard it is. So sad.

Nikki, thanks for the hospice information. My husband also had a big freedom when he was in hospice for 2 months in Summer. I understand why he feels like not going in (yet). He is worried about me and the boys being alone but I told him I would be fine. I also told him that if he delays moving into hospice he will be in pain and will suffer longer. I am still trying to convince him... He would really like to travel abroad. He is determined and the oncologist said that we can go between two treatment. He would like to go to Hungary to visit my family and I would be just so happy if we could do this. But I told him that first his pain needs to be sorted out. I hope I can convince him at the end and we can travel. I think I will start a new thread about travelling because I would like to know other people, patients travel experiences.

Wednesday my husband is going again to the hospital and hopefully he can have the chemo because it is now too long since he had the last one. He is a bit worried because he has a bad cold, running nose. We will see what the doctor says...

Take care All,
Susanna x

Re: My 41 years old husband has inoperable pancreatic cancer

Posted: Wed Oct 15, 2014 8:50 pm
by Fifi
Just want to say great news about the scan. A little bit is actually a lot when it comes to pancreatic cancer. No change is actually the best you can hope for and to have shrinkage is amazing. I hope your husband knows just how good his results are. He should be very proud of himself, he's doing well.

Leila xx

Re: My 41 years old husband has inoperable pancreatic cancer

Posted: Wed Oct 15, 2014 9:15 pm
by Cathy
Hi Susanna

Wonderful news about the CT scan. I know what a worry that was so I am so pleased for you :)

All I can say with regards to the hospice is that what Jonathan (my partner) had in mind when he went wasn't that he was going for him but for me (for respite)... Maybe that is a different way to broach the subject?

Wishing you all the very best

Cathy. Xxxx

Re: My 41 years old husband has inoperable pancreatic cancer

Posted: Wed Oct 15, 2014 11:36 pm
by nikkis
Susanna,
Hope you get that pain sorted soon so you can go to Hungary. We went to the Algarve in the summer with loads of drugs including morphine and everything was far easier than I expected. The hospice staff were really helpful at sorting things out for us, so I am sure yours will help you.
Hoping the chemo went ahead today,
Best wishes,
Nikki

Re: My 41 years old husband has inoperable pancreatic cancer

Posted: Thu Oct 16, 2014 9:35 am
by J_T
I do like to hear good news so great to hear the scan results were good. As Leila says stability is good!!!

Also hoping you get your trip sorted.

Julia x

Re: My 41 years old husband has inoperable pancreatic cancer

Posted: Wed Oct 22, 2014 12:46 am
by SusannaUK
Thank you Ladies!
My husband is still in big pain, last week he didn't have the chemo due to chest infection. He got antibiotics for a week. Tomorrow he's going again and hopefully he will get the 10th cycle, because he hasn't had chemo for 6 weeks. He is moving in to the hospice on Thursday this week. I really hope that they will be able to sort out his pain. He is very very weak, losing weight and most of the time just sleepimg. Heartbreaking for me and for the boys too.
I will update you later on this week.

Nikki, thank you for letting me know about travelling.

Take care all,
Susanna xxx