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SusannaUK
Posts: 112
Joined: Wed Aug 20, 2014 3:32 pm

Re: My 41 years old husband has inoperable pancreatic cancer

Postby SusannaUK » Mon Sep 15, 2014 11:18 pm

Thank you all for your nice words and supportive comments towards me. It means and helps a lot! I just don't feel alone.
Nikki, I will ask the Community Nurse about Diamorphine. It might be better for him too, we will see. Thank you for thinking of me about childcare. I have already been in contact with Home Start and they were really nice, the only problem was that there is nobody who would do weekends. Because they mostly work at office hours. On weekdays we are ok, because the boys are at home only in the morning, then I take them at lunchtime to nursery. Weekends are very hard.
We are getting a lot of support (especially for my husband) from a nearby charity organization for cancer patients and their families. My husband goes there for activities, and counselling, me too for counselling. End of last week they called me and told me that they were thinking how they could help us and offered to pay 6 hours per week for someone to take the boys out at the weekend. We can use this 6 hours as we want, but we have to find the person who we would like to look after the boys. I was thinking of the nurses from their nursery, I will ask them tomorrow. I hope we can do this. Fingers crossed.

Today we had a very hard day, emotionally. He was crying all day, and me too, crying a lot all day. These are the days when he is usually down 3-8 days after chemo. He said to me that I was fantastic and he is sorry that he cannot help me in anything and he told me that I was the rock of his life. We had 1 hour in the afternoon at home and he asked me to sit on his lap and we were just hugging and crying. When I looked at him I just saw how thin and fragile he is, it's heartbreaking. I just cannot imagine him going. We have to be very strong and positive, we agreed in this and also he promised me that he will try to eat or at least drink the energy drinks, because in the last few days he hasn't eaten and lost weight.
After that I had to go to pick the boys from nursery. When we returned he was crying and said to me that he called his Mum in Venezuela and his Mum told him that she loves me so much and she has never met a strong person like me in her life and she thanks me that I am looking after his son so well. This brought tears into my eyes again. Today was just a day of crying but we needed this.
His pain has improved a little bit, but he is very sleepy, slept almost all day.

Sorry, it is too long what I've just written, but this completed my day, just to write it down helps me.

Thank you again for all of you! I am thinking of you all, a lot!
Susanna x

belgrade
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Re: My 41 years old husband has inoperable pancreatic cancer

Postby belgrade » Tue Sep 16, 2014 12:19 am

Hi Susanna,
Having read your post I felt I had to respond just to say I'm thinking of you and your family. I understand how horrible this journey is for you, especially with your little ones who are too young to understand. All I can say is make the most of every day you have together.
Take care,
Hilary

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: My 41 years old husband has inoperable pancreatic cancer

Postby Cathy » Tue Sep 16, 2014 3:15 pm

Hi Susanna,

I'm just quickly catching up after my holiday too and will also email you privately soon but just wanted to say how fantastically well you are coping. I know how tough it is seeing your husband so poorly although I'm pleased you are getting some good support.

I always found it helped to know I wasn't alone.

Take care

Cathy xx

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: My 41 years old husband has inoperable pancreatic cancer

Postby nikkis » Wed Sep 17, 2014 1:34 pm

Dear Susanna,
I hope you find someone to look after the boys at the weekend, the charity sounds great. I think with pain relief the key is to find what works for you and not being frightened of trying different things. I am sure if you husband gets relief from the pain he will feel better mentally as well, but sometimes we just have days when we feel very low, but the next day is never as bad, so I hope it is the same for you.
Love,
Nikki

jimharding100
Posts: 4
Joined: Thu Sep 18, 2014 7:01 pm

Re: My 41 years old husband has inoperable pancreatic cancer

Postby jimharding100 » Fri Sep 19, 2014 1:01 pm

Hi Susanna

My wife normally comments on this forum on our collective behalf but I have a bit of information about the PARP inhibitor your husband has been asked to go on the trial for which I hope is useful!

I am a fairly and have had 16 cycles of Folfirinox now.

I had been referred to a geneticist who I met last week. There is quite a lot of history of various cancers in my family so they are testing for a faulty BRCA gene. Apparently, there are some very encouraging results from drug trials for these things called PARP inhibitors, in cases where the disease has been caused by this particular faulty gene.

It is very interesting. I'm sure it will be many years before they understand fully why some of us contract such horrible things so early in life but hopefully they will one day.

I wish your husband all the best with his treatment, and I hope he is well enough to enjoy the weekend.

Jim

jimharding100
Posts: 4
Joined: Thu Sep 18, 2014 7:01 pm

Re: My 41 years old husband has inoperable pancreatic cancer

Postby jimharding100 » Fri Sep 19, 2014 1:07 pm

Please excuse the typo in the previous post! I'm typing as I'm having treatment so probably a bit fuzzy! I was trying to say I'm a fairly similar age to your husband (37)

SusannaUK
Posts: 112
Joined: Wed Aug 20, 2014 3:32 pm

Re: My 41 years old husband has inoperable pancreatic cancer

Postby SusannaUK » Sat Sep 20, 2014 12:21 am

Thank you all. It looks like that two of the nursery nurses are keen to look after the boys on Saturdays for 3-4 hours. It would be so good, fingers crossed.

Jim, thank you for the information about PARP inhibitor trial. It sounds very interesting and promising. There is also a history of cancer in my husband's family, now I understand why they said that he would be an ideal patient. Let's see what happens.
His pain is not that bad now, but he is sleeping a lot! Almost all day. There are sometimes a few hours when he feels strong and than wants to do everything, he does too much then again bang, falling asleep. I told him that he might need to use his energy a little wiser. Jim, you are also very young, but I am glad to hear that you are doing well and have less side effects and you can also work full time (I've read in another thread). You are doing amazingly well. I will pass the information about PARP inhibitor to my husband tomorrow.
Take care,
Susanna

SusannaUK
Posts: 112
Joined: Wed Aug 20, 2014 3:32 pm

Re: My 41 years old husband has inoperable pancreatic cancer

Postby SusannaUK » Wed Oct 01, 2014 9:33 am

Hello everyone,
Unfortunately my husband is still fighting with big pain. It is now more than 2 weeks. He has some periods (few hours) when he is ok, then he feels like full of energy but than it goes down again and in big pain. We had a terrible 4 days from Friday to Monday, he was in such a big pain, I had to call the hospital and the hospice too. They've increased his morphine (Oxycodone/Oxynorm). Slow release from 130 mg to 200 mg every 12 hours and liquid Oxycodone from 4 ml to 7 ml, whenever he needs it. Unfortunately he need it a lot. He said the pain is as strong as before he was diagnosed or even worse. He wakes up at night because of the pain. It is just so hard to see him like this. Although he's got some good hours when things look "normal", we try to use these hours and spend the time together with the kids, four of us.
The nurses arranged an appointment for him for Thursday with the Palliative Care doctor and they also try to arrange a CT scan because they want to see what is going on inside. I am so so scared!!! The nurses said that unfortunately PC is so aggressive, that the tumours might have grown since last scan, even though after the 5th cycle the CT scan showed decreased sized tumours. Today is chemo day, it is the 10th cycle for him, I hope that everything will go well and they can go on with it. We wrote a long list of questions to ask the doctor. We will see.

Take care everyone,
Susanna x

PCUK Nurse Jeni
Posts: 1086
Joined: Mon Jun 14, 2010 1:30 pm

Re: My 41 years old husband has inoperable pancreatic cancer

Postby PCUK Nurse Jeni » Wed Oct 01, 2014 2:03 pm

Hi Susanna,

Sorry to hear about your husbands pain issues.

Can I ask is he taking anything such as Pregabulin or gabapentin? Do email us on support@pancreaticcancer.org.uk

Kind regards,

Jeni.

knutsford4
Posts: 45
Joined: Sun Sep 28, 2014 3:24 pm

Re: My 41 years old husband has inoperable pancreatic cancer

Postby knutsford4 » Wed Oct 01, 2014 9:09 pm

Hi Susanna,
I'm so so sorry for what your going through, I cried reading your posts, my husband is 48 was diagnosed 2years ago, he is now terminal, they told him a few months in January, it's so hard cos he still looks so healthy, he has back pain this last 5 weeks oncolgious said it was muscular and cramps in his stomach now but only last week the CT showed no change, he's putting the cramps down to the co-codomal he was taking now reading your post I'm going to talk to him about taking to his consultant, he has another scan early November,
Sending big hugs your way, try and stay strong

Martine xxx

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

Re: My 41 years old husband has inoperable pancreatic cancer

Postby sandraW » Wed Oct 01, 2014 9:43 pm

Hi Susanna,
Sorry to hear your husband still has pain, I do hope the doctors can sort something out to make him feel more comfortable, that is what frightens me the most, that my husband will be in pain, and it seems so wrong in this day and age, that people should be suffering.
Lets hope they can get a scan asap and that it at least shows no change and at best further shrinkage. take care sandrax

SusannaUK
Posts: 112
Joined: Wed Aug 20, 2014 3:32 pm

Re: My 41 years old husband has inoperable pancreatic cancer

Postby SusannaUK » Thu Oct 02, 2014 12:21 am

Thank you Jeni, Martine and Sandra!

Jeni, my husband is not taking any Pregabulin or Gabapentin. I will email you tomorrow to send a list of medication he is taking.

About today: he didn't have the chemo. The oncologist said that he is very concerned about this strong pain, so he wanted to cancel the chemo and booked my husband for a CT scan for next week Tuesday. I am just so scared that it will show something bad. I try to stay positive but it is hard...
I don't know when he will have the result of the CT scan, but I guess that pretty quick, as the oncologist said to him that he will see him next Wednesday. Also he found out what kind of treatment is this PARP inhibitor trial, they want him to take part. It would be just tablets, so I assume they would remove the PICC line. But it is so far away, now we are trying to concentrate on the pain issue. Tomorrow morning he is going to the hospital (not where he's getting chemo, another one closer to us, where his oncologist also practices two days per week). He will see a specialist, a Palliative Care doctor and they will review his medication and painkillers etc.
So, that's for today, now I am going to sleep, just too tired and it's very late.

Take care all,
Susanna x

SusannaUK
Posts: 112
Joined: Wed Aug 20, 2014 3:32 pm

Re: My 41 years old husband has inoperable pancreatic cancer

Postby SusannaUK » Fri Oct 03, 2014 5:15 pm

Hi All,

Yesterday my husband went to see the Palliative Care doctor and she kept all his pain killers and other medication as they are. The only thing she's done is prescribed an additional medication called Pregabalin (capsules). This is the medication what Jeni asked me a couple of days ago, if my husband is taking it or not. So now he is taking it.
Does anyone have experience with this medicine?

Take care all,
Susanna x

SueH
Posts: 18
Joined: Fri Mar 21, 2014 9:33 pm

Re: My 41 years old husband has inoperable pancreatic cancer

Postby SueH » Sat Oct 04, 2014 9:50 am

My husband was prescribed pregabalin. I think it takes a few days to get into the system and work fully. My poor husband was in a lot of pain at the time and this drug really helped him. It works on nerve pain in a way that standard pain killers don't. Some people on the site have had a procedure to block the nerve pain. I hope your husband starts to feel an improvement soon. Best wishes Sue

SusannaUK
Posts: 112
Joined: Wed Aug 20, 2014 3:32 pm

Re: My 41 years old husband has inoperable pancreatic cancer

Postby SusannaUK » Tue Oct 07, 2014 11:52 pm

Thank you Sue! Unfortunately my husband still have unbearable pain, we are very worried now. He started Pregabalin on Thursday evening.
He had a CT scan today in the morning and will go to hospital tomorrow to meet his oncologist. He will then tell my husband the result. We are just so so scared! This pain is worrying and scary. The community nurse from the hospice came to visit us on Monday and she said that the best would be if my husband would move again to the hospice for a few weeks. Then they would be able to monitor him and hopefully sort his pain out. Probably he will move in soon. He hasn't had chemo for 4 weeks now, tomorrow the doctor will decide if he can get his 10th Folfirinox or have to be postponed again. It is just so hard to see him suffering, and I am not able to help, which is the worst part. It's so sad! PC is so cruel! I am frightened now of tomorrow's news. I hope that his pain is not back because the tumours have grown.

Take care all of you.
Susanna x