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shelda
Posts: 59
Joined: Thu Feb 04, 2016 11:41 pm

Re: Totally in awe of my wonderful Husband!

Postby shelda » Thu Feb 25, 2016 10:57 pm

Evening pw hope all okay xxshelxx

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

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Fri Feb 26, 2016 8:06 pm

Hi Shel

Thank you very much for asking! Yes all good. Oncologist very happy with hubby. Although tumour markers have increased they are still not very high and he thinks it best that hubby have another 6 week break from chemo to recover from the Folfirinox. The next step will be Gemcitabine and Abraxane but not I suppose until he really needs it which is hubby's view and I have to respect that.

Given that he has no symptoms at all and continues to eat well, it is probably the right decision. I've seen the new thread about maintenance chemo which was great to read but hubby wants to keep the new chemo in his arsenal of future weapons so to speak and attack when he really needs to. He can then go back to Folfirnox or a version of it at a later stage. Oncologist described restarting chemo in terms of driving and deciding when to cut in front of another car without causing an accident. I hope and pray it's the right decision but in any event, hubby can enjoy another 6 weeks at least without chemo.

How's your mum doing and are you holding up okay? Don't know about you but I'm shattered today and have been battling a migraine - probably because I've been getting myself in a state.

(Very very very) Proud Wife tonight xxx

shelda
Posts: 59
Joined: Thu Feb 04, 2016 11:41 pm

Re: Totally in awe of my wonderful Husband!

Postby shelda » Fri Feb 26, 2016 9:29 pm

That sounds good news has he had a recent CT too?? So good he's still got his appetite. Sounds like you could both do with getting a little break away to a nice hotel, bet he's looking forward to 6 weeks of "normality".
I'm fine just trying to take everything day by day...hope that migraine shifts soon and you can enjoy your weekend after the build up to that appointment. Lots of love xx Shel xx

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

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Sat Feb 27, 2016 11:14 am

Morning Shel,

Yes, 6 weeks ago which showed just one of the liver mets to be growing (which is why, combined with increased CA19.9 I started to panic) but stable for the rest. He will have another CT scan in 6 weeks time so will know more then. However, everyone has been telling me to go by how hubby is and I think that message has finally sunk in now and as long as he continues to out eat me, I know all is good as I can eat for England as it is LOL!

And yes, we were planning on using the next 6 weeks to live life to the full and go away etc but my health isn't brilliant either, I said as soon as I hit 50 it would be all downhill from there and I was not wrong!! That's why my hubbys diagnosis came as such a shock as I was the ill one and he was taking care of me!

I am due to see specialist on Monday and depending on results of MRI we will take it from there. Apart from being diabetic myself, I have throat and neck problems and now I am having problems using both arms and so it goes on...

Will pop over to your side now to see how your mum's doing! That's all you can do, take it day by day. Hope you are able to enjoy your weekend too. Take care xxx

Fifi

Re: Totally in awe of my wonderful Husband!

Postby Fifi » Sat Feb 27, 2016 12:59 pm

Hi Proud Wife,

I just wanted to comment on what Dianne wrote you about the Ca19-9. I know how very anxious those numbers make you feel, more so the loved one than the patient. My Dad couldn't have cared less about them, he was only interested in what the scans showed. Dad's numbers came down quite steadily, if they happened to go up by 10 say, I was very upset, but as Dianne said that doesn't really mean anything, it could be a slight cold or unfeeling. I wouldn't worry about these going up by a small amount.

It is so amazing that your husband has a wonderful appetite, rarely not many people do. Seriously embrace that. Dad's appetite was pretty ridiculous, he would have porridge for breakfast, cream muffins and chocolate bars at 11, a roast dinner, a salad for tea and a pizza or kebab for supper. He was desperate to put weight on. He wanted to get to 11 stone for Christmas.
Your husband is fighting, and long may he continue to win. I really hope your husbands next scan results show shrinkage. State of mind is so important and it will relieve some pressure from his mind.

Leila xx.

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

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Sat Feb 27, 2016 6:50 pm

Hi there Leila

I've read all of your posts today and my heart really goes out to you. Your dad was far too young, as is my hubby and indeed, lots of others on here too. That's part of course what makes it so hard to accept. However long we have our loved ones is never ever long enough.

Am I right in that your dad ate loads but failed to put on weight? That was an amazing amount of food he put away. I'm constantly in the kitchen now, cooking up all types of goodies to keep his interest in food. The funny thing is, before he was diagnosed and for most of our 20 odd years together, he never ate much at all and didn't get excited about food. Now I get, "how long for dinner, I'm starving!!"

It really makes me therefore wonder when the cancer started, could it have been brewing for many years undetected or do tumours like this grow within months? I don't even know if anyone knows the answer to that, not that it makes any difference, I'm just amazed to see such a change in his eating habits.

I think Leila, shrinkage is a hope too far, I will settle on stable; time will tell and in the meantime, Nigella Lawson here (I wish!!) will carry on cooking delights!!!

Thank you so much for your continued support, it really means a lot. I just wish I could wave a magic wand and make your hurt disappear. If you ever want to get things off your chest, I'm always here xxx

shelda
Posts: 59
Joined: Thu Feb 04, 2016 11:41 pm

Re: Totally in awe of my wonderful Husband!

Postby shelda » Sun Feb 28, 2016 12:14 pm

Just read your lovely message in mine P. Oh dear I'm sorry to read of your own health worries, I hope that you are managing to look after yourself too as well as your lovely hubby?? Seeing how my dad is I can see what you are going through and like you my dad has health problems and my mum and the family have had such focus on dad being poorly mums has come as a massive shock, she's always been the strong one.
Let's hope this nice dry weather continues for you to have a nice break away.
Take care P xxx Shel xxx

Fifi

Re: Totally in awe of my wonderful Husband!

Postby Fifi » Mon Feb 29, 2016 2:58 pm

Hi Proud Wife,

Dad was a tall slim man, before diagnosis he was a very typical 3 meals a day, no snacks at all. If he missed a meal time, he would just wait until the next one. As a child he never had chocolate or crisps in the house. He went down to just under 9 stone. He ate loads, as you have read, he did out weight on, mostly on his stomach. But no where near enough as he wanted. If he didn't suffer with diarrhoea, then maybe he could have kept more weight on.
We don't know for sure what caused the cancer, whether there even is a cause, but Dad always thought it came from Hernia he had a year before. He was always certain of it. I don't know anything about hernia's to comment, that's just what my Dad thought.
When it comes to scans on the pancreas, the same as before is always a good result. I would say that to my Dad, if they say its the same, don't be upset, it is a good result and shrinkage is an absolute bonus.

Dad did say, if he had his time again, he would have ate what he wanted all his life and been big. Keep cooking him great meals. Not many people are able to have such a great appetite with this nasty disease. I did fight hard to get my Dad steroids. They didn't want him to have them as they are to give someone an appetite, but I wanted them so he didn't lose muscle mass. We did eventually get them, whether they helped, I don't know.

Leila Xx

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

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Thu Mar 03, 2016 1:41 pm

I don't know if I've spoken too soon. On advice of oncologist, we've been reducing daily dexamethasone from 2mg per day and were down to 1/2 mg but I have noticed a mood change with hubby, decreased appetite and he is starting to lose weight. I've upped him to 1mg daily but doesn't seem to make much difference yet. Will give it to weekend and then up to 2mg. I'm presuming he will only need creons if stools pale oily and floating or would they be needed if he continues to lose weight despite going up on dose of dexamethasone?

Leila, I think you are probably right although being big brings it's own health problems of which I'm walking proof so it makes me wonder what is actually best! That's strange that you should mention a hernia. Hubby had a tripple hernia op about 12-18 months before diagnosis. I'd never have thought that a hernia could do it, I would have said diet and lifestyle perhaps but now...???

Am I right that its the anniversary of your dad's passing next month?

PW xxxxx

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Totally in awe of my wonderful Husband!

Postby J_T » Thu Mar 03, 2016 9:28 pm

Hi Proudwife, the only way to know if Creon needed is to do a faecal elastase test. When Ray was ill our oncologist told us several times Ray didn't need Creon. Armed with information from Jeni and Dianne we pushed for the test and guess what? He needed Creon!

Creon can't do any damage and will probably help.

Good luck with it.

Julia x

Fifi

Re: Totally in awe of my wonderful Husband!

Postby Fifi » Fri Mar 04, 2016 8:43 am

Hi Proud Wife,

What Julia says is absolutely right. Creon will not hurt. Creon isn't a medication. It is an enzyme. GP's know sod all about them, do not take thier advice on them, because they don't even know what they are. Speak to the oncologist. But it will not hurt your husband whether he may need them or not, to take them.

I don't think lifestyle has anything to do with it anymore. Dad had a great lifestyle. Very very fit, ate very well. Had a roast dinner every day with plenty of veg. I think the best people in the world, or just being picked out.

Yes, you are right. Dad passed away 21st April, 6.25am. It would also be his 64th birthday this Monday.

Leila xx

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

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Fri Mar 04, 2016 9:14 am

Thank you Julia and Leila, much appreciated. Hubby hates taking pills so I've got my work cut out for me!

I've just read Ray's story Julia and I'm really sorry, Ray didn't have an easy ride at all. As I get to know you all on here,it;s important for me to understand what you all are going through or have been through.

Leila, Spot on about the best people in the world being picked out for this awful disease. I could not agree more.

You will probably find the first of everything is the very hardest to bare. First Christmas without your Dad, first Easter. Now you are approaching his birthday, that's a really hard one. I've always marked these "special days" by lighting a remembrance candle, buying some "birthday" or "anniversary" flowers for the house and on birthdays, either going out or making a nice meal for my hubby and son....just something to acknowledge the day and to show that loved ones will NEVER EVER be forgotten. When my son was little, I always used to write him a birthday card and give him a present from his nanna and poppa, little things like that can help.

If you are finding it hard to cope the nearer you get to those memorable dates and you would like to, please ask moderators for my email address, more than happy to support you in any way I can. You are not alone ok? xxx

shelda
Posts: 59
Joined: Thu Feb 04, 2016 11:41 pm

Re: Totally in awe of my wonderful Husband!

Postby shelda » Fri Mar 04, 2016 10:28 pm

Hi P, hope you and hubby are both okay xx

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

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Sat Mar 05, 2016 1:59 pm

Hi Shel

Yes thank you very much - better! Hubby seems to be eating more now and weight stablised so it seems we took the dexamethasone down too low.

How's things with you? Will pop over to you side now! xxx

Fifi

Re: Totally in awe of my wonderful Husband!

Postby Fifi » Sat Mar 12, 2016 11:31 pm

Thank you Proud Wife, that is very kind of you.

How is your husband at the moment?

Leila xx