A forum for advanced pancreatic cancer issues

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ma2houra
Posts: 22
Joined: Mon Dec 12, 2011 11:50 am

Re: MY MUM

Postby ma2houra » Mon Dec 19, 2011 11:18 pm

Thanks Nikki, i appreciate you're kind words.
Oncologist would'nt give mum enzymes saying they wont help her unless she has 'offensive stools that float'. So thats a no go. Her pancreas is apparently still functioning so she does'nt need them. In the meantime she's vomiting crying and asking for death...and im spitting bullets!
Last edited by ma2houra on Sat Dec 24, 2011 4:22 am, edited 1 time in total.

ma2houra
Posts: 22
Joined: Mon Dec 12, 2011 11:50 am

Re: MY MUM

Postby ma2houra » Sat Dec 24, 2011 4:21 am

Thanks Nikki,

mum goes from one extreme to the next..i seriously think alot of her physical ailments are due to emotional pain.

Soo sick of constipation, nausea and pain. Those three things are ruling our lives right now. Its a vicious cycle and finding balance is haaaard.

oncologist said enzymes wont do a thing to help mum. He wouldn't prescribe them as his opinion is her pancreas is still working and doing its job. Unless she had offensive floating stools then she doesn't need enzymes. Is that true? Everywhere I've looked suggests enzymes are important to aid digestion.

I don't know...he is the professional after all, who am I to argue with him. In the mean time she still has little/no appetite, feels full quickly and can't tolerate most foods, feels bloated alot and has pains in her tummy. I wonder why, are they all side effects of chemo? Her gastroenterologist suggested there may be tumors in her intestines, poor mum, should of seen her face. She looked soo deflated and empty.

Her CT perhaps didn't see the intestines? Iam not sure whats going on around us sometimes, its frustrating. Maybe next scan I'll ask for a full body one.

Chemo hit hard this time round. Mum lost half her hair in one go, it caught up with her. She says no more chemo (for now) until some relative comes and convinces her otherwise. It is her decision, to be honest the amount of rubish she has to put up with just for a chance to prolong a few weeks doesn't seem worth it but then again who am I to say that. So what ever she decides Iam good with. If it works its supposed to ease the pain...which it hasn't so Iam doubting gemcitabine but wont know for sure untill her next CT.

thats it for now. good night

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: MY MUM

Postby Nardobd » Tue Dec 27, 2011 9:58 am

Hi there

I'm so sorry that your Mum is suffering so much, emotional pain often manifests itself in physical problems but that doesn't make them any less real.

I'm not a doctor either but what I know of Creon is that it is a synthetic attempt to replace enzymes if the pancreas isn't making them. Many people with pancreatic cancer are prescribed it "just in case" and indeed that was what happened with Ted. However, he found that the Creon increased the abdominal problems and the consultant confirmed that it isn't always necessary and that his pancreas may still be working. Ted stopped taking the Creon and hasn't suffered any ill effect from doing so.

Your vicious cycle is also ours - save that Ted also wakes up with acid reflux most mornings. It is incredibly hard to deal with and so frustrating for Ted and, I'm sure, your Mum.

Here in the UK the CT scan they give pancreatic cancer patients is the whole torso. The difficulty with the intestines is that because they are soft tissue and they loop around the body it is difficult for the scan to detect small tumours in them. That's why the gastroenterologist couldn't be sure.

Ted responded well to gemcitabine and has had 3 courses of it. He's lucky in that the side effects he does get are minimal but I know they can be vicious. At the end of the day, the best thing you can do is to tell Mum that whatever she decides you will support her fully. Only she knows whether the side-effects are worth it!

I hope you had a decent christmas and that the New Year brings you better things. Keep us up to date.

Nicki

ma2houra
Posts: 22
Joined: Mon Dec 12, 2011 11:50 am

Re: MY MUM

Postby ma2houra » Wed Jan 04, 2012 3:11 am

I feel numb, no feeling, no sadness, no tired, no anger, no energy.
Gemcitabine chemo didn't work for her. Her tumours are bigger, pain worse, nausea storming. Its like she jumped of a cliff and crashed, she's soo low right now.

We just spent a few days in hospital trying to control the evil three (pain, constipation & nausea) and finally by the end of day two she felt a little better, relief!

Then two hours later oncologist came in with CT results and told her chemo probably made her worse because her tumours are bigger. No more Gemcitabine...what are we to do now? Mum put all her hope in chemo and thought it'll shrink her tumour, instead it gave her some pretty bad days and made her feel weaker then ever.

I had this drive to get her well. I was soo busy with organising and preparing, thrifty with keeping on top of her pain, managing all the endless doctors appointments and being super punctual with medications. I had the "can do" attitude..tried to think of the whole person, her spiritual needs, emotional self and positive environment.

What a blow, well is shouldn't be, oncologist told us she had a 50/50 chance of not responding but naturally we grasped at straws and believed whole soul she would be one of the 5% who survive this and she would have that miracle "spontaneous remission"

Pppffff!! What idiots we are! So life jumped up and slapped us in the face. REALITY CHECK, mum's dying...

Oh my God my mum's dying, she looks like she's dying, she feels like she's dying and I can't do anything to stop it. Deep deep down inside my heart I knew but always thought it was ages away. She's deteriorating sooooooo fast. I can't cry, can't feel sad and no longer react to her moans and whimpers. I stayed with her in hospital and during the night I woke up to hear her whispering over and over in prayer to God. "ooooohhhhh lord please don't let me suffer" over and over again, this went on for about an hour. I pretended to be sleeping.

I am horrible, and I don't know why all of a sudden I'm disconnected. So there were no words of hope, nothing.

I watch her suffer, vomit and turn in pain with a blank look on my face. Thats all I got. I got nothing left.

Please help

CFF
Posts: 56
Joined: Fri Apr 22, 2011 9:38 am

Re: MY MUM

Postby CFF » Wed Jan 04, 2012 10:10 am

I'm so sorry to read your post and update about your mum.

I do understand. It's the most painful thing in the world to watch someone you love suffer so much and feel as if you can do very little about it and certainly nothing about what's round the corner.

I've just read some of your previous posts. You are being amazing and very brave. I was the one in our family who managed the appointments, chased up doctors, sat at bedsides, administered meds etc which I found exhausting enough and I don't even have any children!

No wonder you are feeling numb. You must be exhausted. And coming to terms with treatment not being successfully and therefore what this means for your mum is truly awful and you need time to let this sink in.

I can't really offer much advice that will really help. Other than, try not to put too much pressure on yourself. By just being with your mum when you can will be a comfort to her. I'm sure she knows how much you love and support her. I wonder if you can get some help from friends and family with your children and everyday stuff.

Finally, you are doing a brilliant job - try to have some faith in yourself that you are and will be strong enough to get through this.

It is a terrible terrible illness. I lost my dad 3 months ago. I am still so very heartbroken. But I'm here and functioning and I'm able to remember the good times more now as well as the illness. And he's not suffering anymore.

Thinking of you x

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: MY MUM

Postby Nardobd » Wed Jan 04, 2012 7:03 pm

Hi there and I'm sorry the news wasn't good.

First of all CFF is right, you are understandably exhausted. You can't help Mum unless you look after yourself. Get some sleep and treat yourself - doesn't have to be a big thing, your favourite coffee, an hour spend on a hobby or just a long bath. You feel disconnected becaue you are shocked and exhausted. It doesn't make you a horrible person, just someone that can't deal with the enormity of what's going on right now. Get some sleep (I can't sress how important that is) and allow yourself some time.

I over-react to some of Ted's results and think "OMG, this is the beginning of the end"...I'm happy to say that so far I've been wrong (long may that continue!). I hope that this is the same with you.

Mental attitude is so important and you need to look for hope for your Mum. Talk to the oncologist about whether there are other chemotherapies which may help your Mum if gemcitibine isn't the one for her. Other possible drugs include Fluorouracil (aka Adrucil, Efudex, Fluoroplex), Erlotinib (Tarceva) and Capecitabine (Xeloda). Let the oncologist know that giving up isn't an option!

Of course your Mum is worried about suffering. You can help! You need to let her know that you're going to do everything in your power to make sure that she will not be left in pain - that you'll make sure she gets pain relief even if you have to create a scene to achieve this.

My thoughts and prayers go out to your Mum, you and the family. Keep us updated.

Much love
Nicki

ma2houra
Posts: 22
Joined: Mon Dec 12, 2011 11:50 am

Re: MY MUM

Postby ma2houra » Thu Jan 05, 2012 1:06 pm

Thanks Nikki & CFF,

I really admire your courage and strength. This forum is the best place to connect with others going through the same thing, it's comforting to know someone else out there understands what you're going through.

Can I please ask...nausea? Mum's nausea is soo bad most days she cant get out of bed. Has anyone experienced this? Why might this be the case? What has helped?
Also fatigue. She feels soo weak that bathing is an effort, is this likely to continue or might it get better?

Thank you for all your lovely comments and thoughts.
Till next time...goodnight

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: MY MUM

Postby Nardobd » Thu Jan 05, 2012 7:20 pm

Hi

Nausea can be very debilitating. As well as chemo causing nausea, one of the problems with pancreatic disease is the fact that the stomach doesn't empty out as fast as it normally would and this can cause nausea too. Ted takes Metroclopromide for nausea and finds it helps. There are other anti-nausea drugs and you can ask the oncologist for advice on which one might help Mum the most.

Ted also goes through cycles where he is more fatigued than at other times. Soo many things cause fatigue - pain, depression, interupted sleep, nausea, to name a few. Ted also finds that if he's having a tough time he sleeps more to get away from it all. Let Mum rest as much as she needs - it's the quality of the time you spend with her that's important and that will be better if she is rested. Engage her mentally when she is up to it - does she like crosswords or word puzzles? Otherwise gossip (it's well known that we women can't help enjoy talking about other people's problems - celebrities, friends, whoever!).

Sending more comforting and caring thoughts your way.

Nicki

ma2houra
Posts: 22
Joined: Mon Dec 12, 2011 11:50 am

Re: MY MUM

Postby ma2houra » Mon Jan 23, 2012 10:47 am

Thank you nikki for the encouragement. I find comfort to hear the replies of others, it feels like I'am not alone.

Mum has deteriorated quickly. In the past month she has not been outside the house, just sleeping and sitting (mostly in pain). She has also gone off her food and the nausea will not back off.

These are issues she has had since diagnosis... what's new to the picture is panic attacks.
Lately its been almost one a day where she goes off into this tornado of emotions, yelling, screaming, pulling her hair, scratching her eyes out & crying uncontrollably.
...If you only knew my mother before cancer...
what a cruel disease, what a bitter world. My eyes have not dried up today. I feel soo sorry for mum because helplessness takes hold and there's nothing to do but put atavan in her mouth and wait for the episode to pass.

Has anyone else experienced anything like this? Is it apart of her disease or are the medications doing it. Has she finally let her wall down after 56yrs of bottling things inside? I don't know why now the panic has begun and if I cry anymore my eyes might melt away.

Please comment if you can..I need to connect with you

CFF
Posts: 56
Joined: Fri Apr 22, 2011 9:38 am

Re: MY MUM

Postby CFF » Mon Jan 23, 2012 5:05 pm

hi there,

Sorry to hear your update.

I can understand how traumatic it is to see your mum like that. My dad got very distressed at times in last few weeks. He found it really tough to feel so out of it with the medication and couldn't cope that that level of consciousness. We had to get him some sleeping pills at one point but didn't use them too often.

I remember that the Macmillan nurses were also quite helpful with talking to dad about the emotional impact of being so poorly - have you got nurses coming in that can help support you and your mum?

Thinking of you

PCUK Nurse Jeni
Posts: 1070
Joined: Mon Jun 14, 2010 1:30 pm

Re: MY MUM

Postby PCUK Nurse Jeni » Mon Jan 23, 2012 5:56 pm

Hi there,

So sorry to hear about your mum. It sounds harrowing and wearing for her, and the rest of you who are watching.

These sound like quite serious panic attacks? Has her doctor seen her? Have they investigated why she is in so much anguish?

I think people have down days when an illness like this takes hold, but I have not come across this level of distress before. Has she had a counsellor or anything come and give her some psychological help? If not, I would say she needs this at the very least.

Hope things get better soon.

Jeni.

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: MY MUM

Postby Nardobd » Mon Jan 23, 2012 6:46 pm

Oh I'm so sorry to hear about this.

Ted experiences utter frustration with pain...we've had quite a month of it and it's got to the point where he just wants to scream! Add to that the (understandable) terror of having a terminal illness and I can quite understand the panic attacks, although as Jeni says they do seem very severe. Your Mum can't express how she is feeling and it just boils over into one of these attacks. A counsellor or psychotherapist may help because Mum might be able to express to them the feelings she doesn't want to burden you with.

Pancreatic cancer takes its toll on all of us - the patient and those who love them and have to sit around feeling helpless. Rest assured, you are helping just by being there and letting Mum know you love her so much.

Lots of thoughts of strength and comfort coming your way.

Nicki

Drew
Posts: 24
Joined: Fri Dec 30, 2011 7:34 pm

Re: MY MUM

Postby Drew » Mon Jan 23, 2012 7:50 pm

Just been reading your posts and I can connect all your Mums symptoms to that of my wifes ( Heather ). All that is apart from the psychological bit, I don't think I could cope with that one. I also relate to your feelings, its hard to see a loved one in so much pain and failing so much. Heather has lost 4 st in weight from her operation back in May last year.

For pain she was on oxycontine 80 mg twice a day plus 20mg oxynorm for breakthrough, pregablin 250 mg twice a day and amitriptaline at bed time. It took a while to get there but she is now pain free most of the time and only uses the breakthrough twice in 24 hours, it used to be every 4 hours. For the past few weeks she has been very confused , sleepy, and halucinating. The oxy meds have been replaced with MST 100mg and 30mg breakthrough. Still very sleepy but better than being in a lot of pain.

After her op she was prescribed creon ,omeprazole,dioctyl progressively and now suffers from bearable digestive problems.

Heathers success in pain relief came from the palliative care team.

Hope this gives you something to research.

You have good support on this fourm and will get a lot of questions answered. I know its very hard but keep your chin up and be strong for your mum.

Drew x. Sorry about my spelling lol

ma2houra
Posts: 22
Joined: Mon Dec 12, 2011 11:50 am

Re: MY MUM

Postby ma2houra » Tue Jan 24, 2012 12:30 pm

thank you for the lovely comments,

I love that soo many out there care, it touches my heart every time.
To those of you who are suffering I feel for you and pray for your loved ones that a little blessing may fly your way from far down under.

Mum refuses counselling/therapy..Of course she would her denial is bigger then the ocean!!
Even with us kids she finds it excruciating to open up and refuses to do so. After her panic attack she will cry like an infant and lean in and kiss my hands and arms, it's those tiny moments that her guard is down, she is vulnerable and scared and needy and that breaks my heart. I whisper to her quietly that im with her and I'll never leave her, I tell her its ok to feel this way..if she needs to scream and cry it's ok, I will be there listening. Then she calms down and her eyes deviate away from me.

Often in our private times I chat with mum and let her know how important she is to me, how much I love and need her. Its rare to see her feelings come out in this way and she told me it frightens her to death to have another attack. I heave a huge sigh. Today she didn't have one, thank God, but then again today I didn't leave her for a minute so she didn't have the chance to have a panic attack!

She seems to think its the level of pain that sends her on a bender but i gently told her that i think it may be emotional stress and she quietly nodded her head. She feels like she's lost her independence and freedom being cooped up in bed most of the day while everyone around her is enjoying the hot summer she's stuck at home feeling sick, add to that the times when she's left with just dad and the walls start to close in on her.

Pain is a fear that shadows her. She double dosed on oxynorm twice by accident today and spent all morning vomiting. the palliative care nurse help a little but they can only visit once in a while so in the meantime its trial and error.

Mum wants to visit her sister in germany, she hasn't seen her in 37yrs!!!! Oncologist oohed and uummed before reluctantly telling my sister that she can go. She is on clexane for blood clots and I was wondering if anyone knows if it is safe to do a 25hr flight from australia to germany in her condition. We are thinking about splitting it up and staying a day where ever we stop over so its not tooo tiring but seeing as we didn't get a clear answer from her oncologist Im a bit reluctant, mum's eager to go and it would be nice for her to see her sister. Any thoughts?

Thank you for giving me the opportunity to vent..problem shared is a problem halved.

Sending positive vibes and sunshine your way, :)

PCUK Nurse Jeni
Posts: 1070
Joined: Mon Jun 14, 2010 1:30 pm

Re: MY MUM

Postby PCUK Nurse Jeni » Tue Jan 24, 2012 12:53 pm

Hi there,

If she is on clexane, it should be ok to fly, though is she strong enough to stand the flight? I guess if the oncologist said yes, then it's yes! No chance of the sister coming to her?

Good idea to split the flight up, and have a stop over. Be prepared. Plenty of fluids, flight socks, pain relief, snacks, pillow for sleeping, etc...Also, good to contact the airline before the flight to let them know how ill your mum is, so that they can also prepare. It will be a big project, but if it helps to make her feel better, then that's important. Also, the change of scenery might do her good, and it will certainly not be hot! So, she may be able to get out a bit more.

Hope all the plans go well!

KR,

Jeni.