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susikus
Posts: 188
Joined: Wed Sep 05, 2012 11:01 am

Living day by day

Postby susikus » Mon Oct 22, 2012 9:07 am

I thought it was about time I started a new thread, as I am definitely not 'new to this' any more! Yesterday was two months after learning Pete's diagnosis. It was a diagnosis that we knew was possible and were dreading. My daughter had looked it all up even before we knew what it was for certain.

Those two months have been the best of times and the worst of times. I was reflecting on that this weekend when we had an awful day on Saturday and a brilliant day on Sunday. And yet, nothing really changed. The awful day was because Pete has realised he will never be the man he was, never again be able to do what he wants to do (and what he wants to do most is to walk the dogs!) and the brilliant day was because we had fun and Pete seemed to have more energy than he has had for many a day/week.

Our plans for this week are ring shopping, PICC line insertion and consultant appointment on Wednesday and resume chemotherapy on Friday. What are you planning?

Thank you all for 'being there', Couldn't imagine doing all this without you now.
Sue
xxx

rachelqt
Posts: 175
Joined: Tue Sep 20, 2011 9:18 am

Re: Living day by day

Postby rachelqt » Mon Oct 22, 2012 12:53 pm

Hi Sue!

Your words struck a cord with me as the hardest part for my dad was also that he was not the man he was before. Although on his good months he let nothing stop him, when he had energy he done lots of nice things, like going on family walks, picking my kids up from school and even painting a few rooms in the house (his trade)!

Just over 2wks now since he has gone and it is hard to believe he is not coming home, would you believe its hard getting use to normal life again, as in no hospitals and no worries as how he was feeling/coping! Its just saddness, we feel we dealt with the shock factor a long time ago that dad was terminally ill and this has helped us be that little bit stronger i think!

Hope Pete has plenty more GOOD days infront of him, enjoy them!

Im off to work now which is a welcomed distraction at the minute!

Takecare Sue and will pop in again soon to see how your all doing!
Rachel xx

susikus
Posts: 188
Joined: Wed Sep 05, 2012 11:01 am

Re: Living day by day

Postby susikus » Mon Oct 22, 2012 8:32 pm

Rachel, lovely to hear from you, two weeks is no time at all, you are doing so well. I think you are absolutely right - knowing in advance where you are going does make it a tiny bit easier when you get there. But it is still such a hard journey to make.

Today was a good day for us - we bought a ring! I love it and wearing it will remind me always of this time and of making the best of each and every day.

I wanted to ask you all - does anyone have any experience of taking antidepressants with pc. Our GP suggested them a while back and we refused. Now we are rethinking and they are mentioned in the MacMillan pc booklet (which, by the way, is excellent) and our GP is coming to visit us tomorrow afternoon. Any thoughts would be much appreciated.

love to you all
Sue
xxx

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Living day by day

Postby DRAD3 » Mon Oct 22, 2012 8:52 pm

Hi all - Been a bad week for me, don't know why - feel very down and tearful. Wedding anniversary coming up, first signs that Christmas is drawing near perhaps? I'm off work this week for half term and have packed it full of activities to avoid too much free time (can't allow that as that will allow me to think too much!) Gary and I were "lucky" as we had a precious 15 months of coming to terms with the diagnosis so I am left with just a deep, deep sadness, rather than any shock to deal with. During that 15 months it was a rollercoaster of, as you said Sue, the best and worst of times.
I'm taking my daughter to Harry Potter world tomorrow - I will be looking out for some magic potions, or that magic wand I am so desperate to find for everyone - oh I wish!
I hope you enjoy the ring shopping, Sue. The one Gary bought me in the same circumstances is the most precious thing I own.
Love to everyone.
Deb
x

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Living day by day

Postby DRAD3 » Mon Oct 22, 2012 8:56 pm

Hi Sue - we must have posted at the same time! So glad you found your ring. Good day. xx
With regards to anti-depressants, Gary had diazepan/lorazapan (not sure of spelling) as he used to get very anxious around chemo days (he hated needles) and they did seem to give him a lift and really helped. I really noticed how chilled he appeared when he'd had one and no negative side effects. Hope this helps.
Deb
x

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: Living day by day

Postby laura » Mon Oct 22, 2012 11:35 pm

hello sue, bri has been on venlafaxine for over 2yrs, he was on something else before diagnosis, he had a breakdown whilst working, at home office, he also of course has MCD [mild cognitive disorder] so bit difficult to separate the problems, what causes what!
but certainly they had NO side effects , during the 19months of chemo, or since, i believe anything that helps someone feel,cope better, has got to be good, i have been given, citolaprim since bri was diagnosed, i feel sure it has helped me cope, i seldom shed a tear, and feel fairly steady, even with my friend wendy really ill, im able to carry on, so give it a go, lots of love and good wishes lauraxxx

deb, sorry your experiencing a down time, not surprising love, is it ? youve done so well, and on here such a lot, supporting others, no advice sorry, have a big cyber hug and take care of you, lots of love laura xxxx

rachel, lovely to hear from you, glad your coping a little, such a difficult time, thinking of you. lots of love, take care laura xx

susikus
Posts: 188
Joined: Wed Sep 05, 2012 11:01 am

Re: Living day by day

Postby susikus » Tue Oct 23, 2012 9:38 am

That's really helpful to hear your experiences with antidepressants, thank you Deb and Laura. I am sorry to hear you're having a bad week Deb, the rollercoaster goes on and on...

We had such a bad night - Pete was in a LOT of pain and the worst of it is that we have no idea why so it gives no clues as to how to manage it. Repeated doses of oramorph seemed to do absolutely nothing. Glad our GP is coming today. We've had virtually no sleep.

Tired and dispirited
Sue
xxx

yorkypaul
Posts: 136
Joined: Tue Sep 11, 2012 12:23 am

Re: Living day by day

Postby yorkypaul » Tue Oct 23, 2012 3:56 pm

SHi Sue. I was very sorry to read that Pete had a bad night of pain and that you both had so little sleep. I can totally empathise with you. For us, Saturday night was awful (pain and vomiting again) and yet Sunday night was great - no pain or sickness and a good night's sleep. What is it all about? It's the old rollercoaster again and very tiring. I do hope the GP is able to give you some help today. I will be thinking of you both.
Hugs,
Paul

susikus
Posts: 188
Joined: Wed Sep 05, 2012 11:01 am

Re: Living day by day

Postby susikus » Tue Oct 23, 2012 5:30 pm

The GP has come and we now have different painkillers to add to the morphine based ones, antidepressants and stomach protectors. Our bathroom is beginning to resemble a pharmacy! There was no reason that any of us could discern, just one of those things...

Pete has stayed in bed all day and has had some sleep. He doesn't want to eat at all. I have, depressingly, been filling in life insurance forms ready for tomorrow when we see the consultant.

I have worn my ring all day - I never want to take it off! Our GP loved it and suggested I have a gold chain to wear it on whenever I cannot have it on my finger - very wise.

I hope Andrea is having a good day today Paul. When will you know more about chemo?
Love to all
Sue
xxx

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Living day by day

Postby DRAD3 » Wed Oct 24, 2012 5:30 pm

Hi Sue
So glad to hear the GP has prescribed some more meds to help Pete. How did it go today with the PICC line insertion and seeing the consultant? Is all OK for chemo on Friday?
Deb
x

susikus
Posts: 188
Joined: Wed Sep 05, 2012 11:01 am

Re: Living day by day

Postby susikus » Thu Oct 25, 2012 2:29 am

It is a long story, which I will tell you later, but for now I need to tell you that Pete died at midnight, and I have just come home two and a half hours later. It all happened very quickly but the ward, the doctors and nurses were superb.

RIP Pete, most loved of men.

Sue

yorkypaul
Posts: 136
Joined: Tue Sep 11, 2012 12:23 am

Re: Living day by day

Postby yorkypaul » Thu Oct 25, 2012 7:37 am

Oh Sue, I am so sorry. I looked yesterday and was afraid I had not seen a recent post and wondered if all was ok. You are such a beacon on this site, always there to help and offer good advice. It was obvious to everyone how much you love Pete. You have been a pillar of strength for him. You can expect people to offer you the comfort that he is now at peace and is no longer suffering. It won't help at first, but, in time, you will know it to be the case. Look after yourself, dear Sue, and continue to use your forum family for comfort and support.
I send you my love and prayers. I also pray for the rest of us who are treading the same path, but a few paces behind you. PLEASE stay in touch when you can.
Massive hugs,
Paul xx

charney
Posts: 74
Joined: Wed Mar 14, 2012 2:29 pm

Re: Living day by day

Postby charney » Thu Oct 25, 2012 7:39 am

I have been reading your posts and I am so sorry to hear about pete
my thoughts are with you,
cheryl x

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Living day by day

Postby DRAD3 » Thu Oct 25, 2012 7:27 pm

Oh my dearest Sue - I am shocked and so saddened to hear that Pete has died. I cannot begin to think how you are feeling today as this seems to have come so quickly and I am sure you are in shock yourself. Despite knowing what is to come, one cannot prepare oneself for it at all. My heart is aching for you and I so wish I could give you a hug. Remember we are here for you whenever you need us - I feel we have walked a similar path you and I and our men were similar too. You shared some lovely times and you obviously had a wonderful relationship - I know your memories and the knowledge that you shared a special bond will give you great comfort. RIP Pete and love to you Sue.
Deb
x

rachelqt
Posts: 175
Joined: Tue Sep 20, 2011 9:18 am

Re: Living day by day

Postby rachelqt » Thu Oct 25, 2012 9:24 pm

Dear Sue,
Im so sorry and shocked to read your news about Pete. This is truly a dreadful disease and it makes me angry that it has taken another one of our loved ones.
Just take each minute, hour and day as it comes.
You are in my thoughts and prayers
Rachel x