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deb3927
Posts: 5
Joined: Tue Jul 15, 2014 11:22 pm

Re: Mum's diagnosis

Postby deb3927 » Thu Jul 17, 2014 8:58 pm

I only learned of the creon tablets on here, I will ask my mum to ask about them if her weight is still coming down next week.

I do hope your mum gets to see the graduation and wedding next year! I have heard of people hanging on against the odds when they have something to wait for! Fingers crossed for her!

My mum couldn't have her chemo today as her platelets were down and next week is her week off so she will have a 2 week rest. I am hoping this will give her a little boost as she has been so tired this past week and lost all interest in everything! I live abroad so I call everyday to find out how she is etc then give her my news and lately I have been getting inappropriate responses (not rude or anything, just wrong) as though she has switched off and is just making noises where she thinks they should be! I then take the hint and cut the call short as I assume she is just too tired for conversation! She has changed so much in such a short time, when she first started on the chemo I couldn't get a word in! You are so right, this is such a tough journey!

Debx

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Mum's diagnosis

Postby Sueoliver » Wed Jul 30, 2014 7:15 am

My mum is having her 3rd folfirinox on Friday. She has coped well with the first 2 but they were both reduced by 20%. This one is going to be stronger.
She is weak though and seems to sleep more going to lay down through out the day. My one concern is that she never goes out. She hasn't really been anywhere since diagnosis in May! Is this normal? Has anyone else experienced this? She used to be out all the time. She hasn't even been to my house!
Gosh this is so hard!
Sue

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

Re: Mum's diagnosis

Postby J_T » Wed Jul 30, 2014 8:59 am

Hope your mum's next session goes well.

With regards to not going out, my husband was like this after the folfirinox was stopped. He was very tired all the time, developed clots in both legs and didn't have the energy for anything, watching tv even. Its very hard to see but there was no point chivvying him along because we could see how tired and ill he was.

Its a bit different for you mum because she's still having treatment and you may find she picks up a bit after this session and starts to feel well again. I hope so.

Julia

brodders
Posts: 65
Joined: Fri Jun 20, 2014 7:51 pm

Re: Mum's diagnosis

Postby brodders » Wed Jul 30, 2014 4:13 pm

Dear Sue,
I have removed a post in the past for being too honest. All I can say everyone is different and it's great that your mum is having chemotherapy - hopefully in a few weeks she will get stronger. Just enjoy her. Cate xx

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Mum's diagnosis

Postby Sueoliver » Wed Jul 30, 2014 10:54 pm

Hi Cate I don't think honesty hurts especially under these circumstances we are all going through! It is all so emotional! Mum went for blood tests today and her chemo has been delayed a week as her bloods aren't right!
Thankyou Julia for your reply you are right there is no point chivvying them along! Hopefully when mums bloods are back to normal she will have more energy.
Vanessa if you are reading this how is your mum? How are you?
Sue x

Ruthos1
Posts: 21
Joined: Sun Feb 02, 2014 10:28 pm

Re: Mum's diagnosis

Postby Ruthos1 » Thu Jul 31, 2014 2:31 am

Hi to you all,
I first posted on this forum in January I if remember rightly.
All of your stories bare a huge resemblance to mine.
My mum is also 75.
She was diagnosed on Xmas eve 2013 with advanced PC despite three biopsies coming back inconclusive.Her diagnosis was then changed to chronic pancreatitis. A repeat CT scan was performed a few months after this '2nd' diagnosis which revealed increased inflammation around the head of the pancreas, a laparoscopy was performed and pancreatic cancer was confirmed two weeks ago.
I live in Corfu but have been coming backwards and forwards to England every 10 days to be with my mum.
She has been amazing , remains cheerful and tries to enjoy every day ( she is on creon , which have helped with her weight loss and takes morphine for the pain, which is getting steadily worse). We, however had our first appointment with the oncologist today and I think 'things really hit home'.
We saw a lovely specialist nurse, who has referred mum to a dietician and Macmillan nurses will be in touch, although she is a little reluctant to have 'visitors' as she is a private person.
I am due to fly back to Corfu on Saturday but will return within a week/10 days.
I just wanted to say that I have read all of you messages on here and my heart goes out to you all, I also feel that I have reached the point where I feel the need to be 'in contact' with other people going through similar now.
When I think of the forthcoming months it fills me with fear and dread.
My thoughts are with you all.
Ruth
X

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Mum's diagnosis

Postby Didge » Thu Jul 31, 2014 9:46 am

Ruth, I think the fear dread is something which we are all familiar with whatever the stage we're at. My partner was operable but now has pain in a suspicious place so is in the process of having tests/scans. The truth is that this cancer has such a low survival rate that it is very hard sometimes to cope with the likely future. I do try to do what I tell everyone else to, and live in the day and not the future. But it is really hard! As you know there are so many people here to support you whenever you need it. We are all living in some kind of nightmare. Thinking of everyone here too, whether sufferers or family/friends.
Didge x

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Mum's diagnosis

Postby Sueoliver » Thu Jul 31, 2014 5:24 pm

Hi Ruth I think it helps to beable to post on here. At least we all understand each other. I went round my mum's the other day and just stood there and burst into tears. She was so shocked asking what on earth was the matter!! I said to her I just felt so sad! She replied that she was ok and she would survive! That told me!
I am also dreading the future but I do try to live in the day. Sometimes it is just impossible.
At least we can all support each other somehow!
Sue x

brodders
Posts: 65
Joined: Fri Jun 20, 2014 7:51 pm

Re: Mum's diagnosis

Postby brodders » Thu Jul 31, 2014 6:03 pm

Hi Sue,
Please try not to think about it - its so very hard I know. I wasn't nearly as brave as you - I only joined the forum after my precious mum had died. Nothing can prepare you but please enjoy the present if you can. My darling mum said to me when I cried -' please don't be sad I am only sad if you are its life'. You will hopefully have many more months together. Cate XXXXXXXXXXXXXXXXXXXXXXXXX.

Ruthos1
Posts: 21
Joined: Sun Feb 02, 2014 10:28 pm

Re: Mum's diagnosis

Postby Ruthos1 » Fri Aug 01, 2014 12:09 am

Hi Sue,
Your mum sounds so brave like my mum and it makes it all the more saddening and very difficult.
I will take the advice given and take each day at a time and not look too far into the future.
Am still so scared, but must be strong as my mum only really gets upset when she sees me upset.
Take care ,
Ruth
xx

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Mum's diagnosis

Postby Sueoliver » Sun Aug 10, 2014 9:01 pm

Mum has had 3 sessions of chemo now but this time it has really taken it out of her. She hasn't eaten for 3 days as she keeps being sick. She is hardly drinking anything either. I keep telling her to drink water but she only has a few sips!
When she had her chemo they said one part wasn't prescribed the one in the syringe! Nobody seemed to know why!
This is truly terrible and I can't bear seeing her like this.
I can't see any improvement at all with this folfirinox chemo she actually seems worse!
Sue x

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

Re: Mum's diagnosis

Postby SueH » Mon Aug 11, 2014 1:13 am

Hi Sue

Sorry to hear you Mum is not doing well. Does she take Emend for the sickness, you take one before the chemo and then one for the next two days. It was the only thing that stopped my husbands sickness when he was on the fox. Re the syringe of chemo ( the bolus). My husbands oncologist said that this was the part that could bring down the white blood cell counts the most. So if his bloods were getting low they would reduce it for him. Maybe her white blood cell count was getting low? I would ask the doctor next time you see him if you are concerned.

Hope your mum feels better soon. If you are worried call out the doctor. If she becomes dehydrated she will feel worse.

It is awful seeing someone you love go through this.

best wishes Sue

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Mum's diagnosis

Postby Sueoliver » Mon Aug 11, 2014 6:45 am

Thankyou Sue that explains it as they delayed her chemo by 1 week as her white blood cell count was low. She is going to have injections for 5 days for this. I will see how she is today and ask her if she was prescribed Emend.
Thankyou. Sue

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Mum's diagnosis

Postby Slewis7313 » Mon Aug 11, 2014 5:56 pm

For information, I have Emend for days 1 to 3 and the cell boosting jabs for days 5 - 9 (inclusive) for EVERY cycle.

Steve
X

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Mum's diagnosis

Postby Sueoliver » Mon Aug 11, 2014 8:22 pm

Thankyou Steve I will pass that information on. I hope you are doing well. Sue x