A forum for advanced pancreatic cancer issues

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Jool2504
Posts: 42
Joined: Wed Sep 19, 2012 12:28 pm

Re: Help - Husband just being diagnosed with advanced cancer!

Postby Jool2504 » Tue Sep 25, 2012 11:41 pm

Earning morning to everyone. First chemo session at 16:00 today. Bills still not sleeping well at night I'm off to sleep in single bed, last time I did he slept all night.
Hospital have said he shouldn't have too many side effects on the gem chemo treatment. He took him amitriptoline at tea time then his oxy at bedtime think when he takes them together they counteract each other. He's having really bad dreams & twitches are terrible he twitches / jumps so much it wakes him up. Can hear his groaning in bed whilst I type this. The district nurses came today I read the paperwork afterwards saying his eating is inadequate & told me they are concerned about his anxiety. Got a script for fortisip, flamin chemist have had to order it so will collect before chemo tomorrow.
Has anyone else experienced the purple toe thing? Oncology say its a symptom of PC, it gets really bad when he's in bed or stationary but as soon as he walks about it goes.
Work have said I have to work from office no more working from home if I go back, can't do that when I'd be in Brum & Bill in Mansfield, have been offered exit on capability so would get a small payout. Macmillan are dealing with forms, attendance allowance & blue badge. Just have to decide what to do about work, realistically I'm going to have to take the package. Have arranged meeting with building society to see what I can do.
Got to go Bill is stirring.
Thanks for the advice, dreading seeing him hooked up to IV.
Nite. J

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

Re: Help - Husband just being diagnosed with advanced cancer!

Postby laura » Tue Sep 25, 2012 11:50 pm

hi jools, please dont worry about the chemo brian had 19 months of gemcitabine. its over within the hour, youll have a cup of tea and biccies, talk to others, and bingo,time to go, am sure you will wonder, what you were worried about this time tomorrow
wish him well from me [ if you can] and you sleep well, talking of amitryp, the dr tried me on it and i had awful dreams, wasnt at all gd for me, yet bri takes one at night, no probs, strange isn't it ?
love and strength laura x

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

Re: Help - Husband just being diagnosed with advanced cancer!

Postby susikus » Wed Sep 26, 2012 5:28 am

Good luck with today Jools. Laura is right - the chemo admin is relatively easy. From what I can gather people react differently but many people get a bit of nausea and tiredness - well we have that already. Our chemo is not today after all - but we are seeing the oncologist again today, then tomorrow we have a chemo training session for patients and relatives starting chemo - 2hours long, organised by MacMillan - and then we have the chemo appt at 2.30pm on Friday.

We will be thinking of you today. Hope it all goes well, let us know tonight if you can.
Hugs, Sue

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

Re: Help - Husband just being diagnosed with advanced cancer!

Postby DRAD3 » Wed Sep 26, 2012 8:12 pm

Hi Jools - hope all went well today. My husband also had very fitful nights - lots of twitching and restlessness - perhaps just the anxiety and worry - he must have had many nightmares he didn't share with me - understandable. No experience of the purple toe I'm afraid but it would seem the doctor's aren't too concerned, from what you say. Sorry to hear that work have forced you into a tight corner - I do hope that you manage to come to a decision that you can live with and that doesn't leave you in a financial pickle. So much to think and worry about as well as PC - you are doing amazingly well coping with it all, Jools. Love and continued strength.
Deb
x

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

Re: Help - Husband just being diagnosed with advanced cancer!

Postby yorkypaul » Wed Sep 26, 2012 8:34 pm

Hi Jools. I am not yet experienced enough to give accurate advice but would like you to know that you are both constantly in my thoughts and prayers.

Jool2504
Posts: 42
Joined: Wed Sep 19, 2012 12:28 pm

Re: Help - Husband just being diagnosed with advanced cancer!

Postby Jool2504 » Wed Sep 26, 2012 8:48 pm

Bill is my hero, he was fantastic today, once he was hooked up he fell asleep, think he was worried about initial reaction that his body would have. It only took 50 minutes, he was feeling quite sick but seems ok now, he's had pineapple juice & chunks & tasted it, first thing he has tasted right in days. He said he was tired but has only just stretched out on sofa & is now asleep. Looks like he's twitching quite bad in his sleep, going to speak to Dr about alternative to zomorph, his zopyclone has been doubled just hope he sleeps tonight he was up 6 times last night! Chemo next week is at 10am which will suit him better.
Last night I decided to try & contact his sisters whom he's not heard from in 4+ years, his niece called this morning, sadly his eldest sister died in February, she also had terminal cancer but it was lung, she had a stroke & died. His youngest sister has altziemers (excuse my spelling) his nieces are coming to visit on Sunday. I had to break the news but he took it far better than I imagined. Strange situation as my family are close.
Hope he has a good night & is ok in the morning so I can pop out & get a few things.
Thank you all for being so supportive.

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

Re: Help - Husband just being diagnosed with advanced cancer!

Postby susikus » Wed Sep 26, 2012 9:16 pm

That sounds like it went well Jools, well done both of you. I hope ours goes as smoothly on Friday. How many sessions are you doing? And are you monitoring with CT scan or blood tests or both? I hope you have a good night tonight, sleep well...

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

Re: Help - Husband just being diagnosed with advanced cancer!

Postby laura » Wed Sep 26, 2012 10:48 pm

hi jools, so glad some of your fears about chemo, were unfounded, did your hubby not have an anti nausea injection prior to chemo?, bri used to have metocloropine [domperidone] , he had 8 a day every day i used it as preventative rather than cure, sorry if i have already told you that!!!!
bri usually found that the next day and half,after chemo, were pretty well non existant, tiredness, some sweating / shivers, just replanned our days /life?. though other times we would go shopping on the way home, and he'd be good, played it by ear, hope it works out the same for you both, thinking of you and wishing you so much luck. love laura xxx

Jool2504
Posts: 42
Joined: Wed Sep 19, 2012 12:28 pm

Re: Help - Husband just being diagnosed with advanced cancer!

Postby Jool2504 » Wed Sep 26, 2012 11:27 pm

Tried sleeping with him but his tremors are horrendous he's smacked the wardrobe 5 times in half an hour, think its the amitriptoline thinking back he's been like this for just over a week & that's when he started on them. Another call to the GP in the morning.
He has 8 weeks of chemo before a CT scan as his blood tests have all come back
Normal it was the ultrasound that found the cancer. He has 3 more chemist then is seeing oncologist again.
Susi hope the chemo goes as well for you. He had anti sickness into his IV and tablets to bring home, 4 per day before food. Friends father in laws being diagnosed with PC today he's having his pancreas removed next week.

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

Re: Help - Husband just being diagnosed with advanced cancer!

Postby susikus » Thu Sep 27, 2012 8:16 am

I hope you managed to get some sleep in the end Jools! I think you're right about the amitryptaline and we need a hotline to the GP! I am very impressed with how our GP surgery is handling us - the first time we've needed anything more than routine assistance. I hope yours are as good and keep asking if they're not. Let us know how today goes. We are off to chemo training session today and chemo itself at 2pm tomorrow so I am keen to hear all the details. Lots of love to you, Sue

Jool2504
Posts: 42
Joined: Wed Sep 19, 2012 12:28 pm

Re: Help - Husband just being diagnosed with advanced cancer!

Postby Jool2504 » Thu Sep 27, 2012 7:37 pm

Hi all,

Susi how did the training session go!
24 hours post chemo & he seems ok, decided to go with the advice of giving Bill the sickness pills 4 times a day instead of half an hour before he eats. He's felt a bit sick during the day but far better than expected, I've felt sick all day with a bad head!!
The GP came & had his meds changed, no more amitriptoline but now on another depression pill can't recall name similar to diazepam. Strangely he's slept better today, new meds at bedtime.
Macmillan occupational health visited were getting a bath lift & sometime for the toilet, Bills not happy but gave in reluctantly. He seemed very sad afterwards. He's now in the bath. He was up 4 times in the night hope tonight improves.
New car tomorrow hope he likes it.
Have a good evening all.

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

Re: Help - Husband just being diagnosed with advanced cancer!

Postby laura » Thu Sep 27, 2012 11:15 pm

hi jools, glad that your 1st 24hrs have passed uneventfully. long may it last, no reason why it shouldnt, good that the anti nausea tabs are doing their job, not surprised that you feel yucky! are you? sometimes 1st thing in morning i feel nauseus, just worry isnt it?
am sure your hubby feels sad, he knows his life is/has going to change, he will soon find a new "normal", hopefully as he realizes that its there to help him, and finds that it does, he should be ok, if he lost a leg in an accident he would happily use crutches to get around i guess.!!
tis lots of changes to get used to, soon become part of life. good luck and love to you both. laura xxx :P

Jool2504
Posts: 42
Joined: Wed Sep 19, 2012 12:28 pm

Re: Help - Husband just being diagnosed with advanced cancer!

Postby Jool2504 » Fri Sep 28, 2012 5:01 pm

Oh what a morning Bill slept from 11pm last night till 6am which was fantastic but he had a temperature of 98.3 so rang emergency no and had to take him into notts city hospital, he was coherent enough to show me the way, he's been talking rubbish a bit of late. Hospital was very good took bloods & anti biotics straight into him, they said he could be in till Sunday, I left at 11 to get his pjs etc & pick up new car, Bill then rang to say the oncologist had been to see him & he could come home, so collected car & went back for him. He really is getting quite doddery on his feet & very easily confused. They took X-rays, bloods & a MRI must have been ok.
So we're home, he's had lunch in hospital then cuppa & yogurt then snoozing on sofa.
I'm exhausted again.
Susi hope today's gone ok,
Laura thanks.

Jool2504
Posts: 42
Joined: Wed Sep 19, 2012 12:28 pm

Re: Help - Husband just being diagnosed with advanced cancer!

Postby Jool2504 » Fri Sep 28, 2012 5:01 pm

Oops sorry it was 39.3

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

Re: Help - Husband just being diagnosed with advanced cancer!

Postby susikus » Sat Sep 29, 2012 10:12 am

Gosh Jools, that was an eventful couple of days! How is Bill feeling now and how are you? I hope you're not coming down with something - that would be just the worst possible timing! Our chemo went really well, our night not so well. More tweaking of medication required! It is a case of trying to get the right things for the right person at the right time isn't it? Lots of trial and error. Are you having chemo every Wednesday? I hope you both had a good night's sleep last night, think I need a nap...
lots of love, Sue