A forum for advanced pancreatic cancer issues

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Joined: Fri Mar 30, 2012 10:27 pm

a familiar story

Postby sadsloth » Tue Apr 03, 2012 10:24 pm

Hello, I am new to this forum, but have read many of your stories with great sadness.

My Mum has recently been diagnosed with advanced pc, that has spread to her liver and lung. This was picked up after she was admitted to A&E with DVT. Since then she seems to have deteriorated so quickly it's scary, and she is now a mere shadow of herself. Everything seems to have happened both so quickly, and so slowly – it will be almost 2 months from the tumours being discovered to her starting chemo.

She says that she isn't really in pain, but is uncomfortable everywhere. I feel that she is trying to protect us by not really letting on how bad she is feeling. She is definitely putting on a brave face, and has an amazing ability to sound perky when she picks up the phone – although a conversation of more than a couple of minutes proves difficult due to her breathlessness and cough. Most debilitating seems to be the tiredness – she needs to spend most of her time resting after doing the smallest of daily tasks. I'm worried that this will be much worse when she starts the chemo.

She has been on her own for many years, and has a good support network. But at the moment I am finding it hard to balance helping her and looking after her as much as I would like, and allowing her to maintain her independence, which is very important to her.I also know that she won't ask for help, but already feel that she needs quite a lot of it. She is already getting confused about things, again something I can only see getting worse. I know that we have a tough time ahead of us.

I don't really know why I am posting this. Maybe just to let you all know that there is someone else out there going through this at the moment. I guess if anyone is able to offer any tips to combat the tiredness then that would help. (She had been having great trouble sleeping – but that seems to have improved a bit since they upped the sleeping tablet dosage – I had hoped that this would help ease the tiredness in the day too, but it doesn't seem to have made a difference).

Thanks for listening (reading!)


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Re: a familiar story

Postby Barbara2 » Wed Apr 04, 2012 2:15 am

Hi S,
I am also quite new to this forum my husband having just been diagnosed with pc, I just wanted to say I have already found a lot of support here and I hope you will too. I am sorry to hear about your mum and I hope she improves with the chemo, my husband is not strong enough to start his yet but hopefully will be soon. I'm afraid I'm not qualified to help with the tiredness but I'm sure others with more experience or knowledge than me may be able to offer some suggestions.
Barbara x

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Joined: Wed Aug 10, 2011 10:38 pm

Re: a familiar story

Postby louiepc » Wed Apr 04, 2012 8:42 am

Hi S

I am very sorry to hear about your mum's condition. It is very difficult looking on, seeing someone you love deteriorate so quickly. My Mum had pc.

She suffered terribly with tiredness. We just used the days that she had energy as special days, but sadly they were few and far between.

Not everyone suffers with tiredness through the chemo, my mum did, but your mum maybe different. Some people don't really have side effects. I suppose it all depends on the strength of dosage that is given.

Take care - carry on posting, this a great site, where at least everyone is in the same boat to some degree or another, people understand what you are going through and talking about.

Louie xx

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Joined: Sat Feb 14, 2009 6:25 pm

Re: a familiar story

Postby Nardobd » Wed Apr 04, 2012 7:20 pm

Hi S and I'm sorry to hear about your Mum.

Tiredness is something which is common with this disease. My husband gets days when he is more tired than others and it's important to make use of the times when he has more energy.

You and your Mum are in my thoughts.

Kind regards

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Joined: Sat Jun 25, 2011 9:22 am

Re: a familiar story

Postby ali » Wed Apr 04, 2012 8:52 pm

Hi S and Barbara
these boards become a great support,i found them so helpful last year when my mum fell asleep forever to PC--she died in june after only feeling very unwell for about 14 weeks,but was advanced with liver mets. No jaundice or ascites--so every case differant.
she was 79 but was active,driving,golfing lady till then.
So good and bad days for me--at moment reliving all that happened from last years mother's day (3rd April ) when first felt "could not eat"--seemed to happen overnight.
make sure you ask for all the attention and care your loved one's require--as PC moves so fast and i found hopital staff seem to forget this some times,although was only in 10 days and we took her home --thinking weeks/2-4 months but --no only 4 nights in own bed and fell asleep on the 5th evening----only good thing, it was so quick for her as did not suffer for too long or really visibly deteriorate too much--looked pretty much the same although obviously thinner.So glad to be back in her own bed,even had her friend to visit 2 days before she died (only for an hour ) and got some make-up on---no way she thought she was going to die that weekend

Sorry to go on and on but i had great chats with Lynn, laura,Rachael,Louie and others.
I am still drawn to these boards ,but don't post much these days.
I am interested and deeply saddened how quickly the registered numbers have increased since i joined last June

take care and much love to all
Helen xx

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Joined: Fri Mar 30, 2012 10:27 pm

Re: a familiar story

Postby sadsloth » Wed Apr 04, 2012 10:55 pm

Dear All, thank you so much for your kind words. I have read about all of your situations and my heart goes out to you all. Since Mum's diagnosis I have learnt so much about this illness, but the speed and ferocity with which it takes over peoples' lives never ceases to amaze me. It seems so hard to write the right words, but...

Barbara, I'm so sorry that your husband is so unwell, I hope for you both that he is able to gain enough strength so that treatment is at least an option for him.

Nicki, again I am so sad to hear that your husband is suffering so much, you and your husband are both an inspiration in your long battle against this cruel disease

Helen & Louie, I am so sad to hear about your respective losses, and amazed that you both have the strength of character to remain active in the forums providing support to others

Even before I posted on the forum I had found comfort here, and hope that I will be able to do the same for others....

Thanks again

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Joined: Sat Aug 28, 2010 6:23 pm

Re: a familiar story

Postby lynbo » Thu Apr 05, 2012 12:22 am

Dear S
Maybe keep a dairy of the amount of sleep & tiredness? I did with my husband, and they tweaked his medication a little, they lowered gabapentin and upped his oramorph?
Like the others say - everyone is different, sometimes my Andy would have a really good active day, followed by total wipeout
Live each day as it comes and love lots
Much love
Lynbo xxxx