MY MUM

[ma2houra]

My mum is having her first "good" day since being diagnosed with PC in late October 2011. She woke up this morning humming her favourite tune, walked around the house without keeling over and cooked us all lunch, steak and mash. (yumm)

For the last seven weeks since that unforgettable day she has been soo sick to even finish one sentence. Some physical sickness but most emotional. Mum wont talk about anything. Her fear, her pain, her anger is just buried far away however it shadows her every minute of the day.

I am soo sad my mum is sick..so sad for the time she will lose, I feel cheated. My mum is 56yrs old. She was always in perfect health, never suffered from anything in her life. Her love and skill for fishing in the ocean would put any man to shame, always laughing and active and focused on loving her family and life...to have this blow rain down is cruel.

Seeing her weak, pale, nauseated and losing weight faster than ever breaks my heart. We anticipate she will suffer these symptoms however whenever she does it feels like our grief gets bigger and bigger.

Life throws things at us we are sometimes not prepared for, not willing to bear or can't take the brunt, but when you're mum gets sick...thats a whole other ballgame.

Rambled on enough..not making much sense just typing whatever comes to mind looking for the theraputic effect.

thanks for reading/listening to me.

[lynbo]

Hi

Ramble as much as you like, that's what we're here for.

Glad your mum had a better day, it lifts your spirits eh?

Hope your ok, you obviously don't sleep, like me!

Lynbo

Xxx

[PCUK Nurse Jeni]

Hi there,

Sorry to hear about your mum. It is a difficult time for everyone involved.

Is there a plan of care in place for her? Is she having an operation or chemotherapy?

Regarding the symptoms of nausea and weight loss, is she on any anti sicKness tablets, or any pancreatic enzyme replacement supplements to help with weight loss?

If not, then she should be.

If you would like to email me at support@pancreaticcancer.org.uk I would be happy to help.

Kind regaards,

Jeni, support manager.

[rachelqt]

Hi

Im very sorry to hear about your Mum, I do know how you feel, my Dad (60) was diagnosed in Sept 2011. Its so hard to see a loved one who was once full of energy and life to deteriorate to PC. The feeling is just horrendous.

What I will say is try and stay positive. My Dad was very ill and went down hill quite quickly when he was diagnosed and now he is doing quite well since he started chemo and got his anti sickness medication sorted out, something we thought we would never see.

This forum is a great support if you are looking advise or just a chat!

Look after yourself..Rachel xx

[ma2houra]

Hello all,

Thanks for the lovely comments. We are still finding our bearings, getting used to the idea that mum's sick (believe me if you know my mum that notion is foreign)

Oncologist put her on gemcitabine as a palliative measure to try to ease the pain, she's had four sessions already but still in alot of pain so doubting if it's working for her.

In regards to nausea meds, pain meds, she's on fentanyl patch 40 and stemitil anti emetic. Not doing the best job but keeping symptoms simmering instead of boiling over which is thankful.

Oncologist did not once mention enzymes or a pain management plan which iam a bit angry about because at her diagnosis he promised her she could/would be pain free so it's a let down on his part considering mums biggest fear is pain (not death) hmmm.

She's visiting alternative medicine to try and boost her immunity and strength during rounds of chemo and thankfully got enzymes from that clinic, along with weekly vitamin C IV and vitamin B12 forte wich is doing wonders!!

Although we all feel like we have been dropped on our heads I am grateful mum's ok today, I feel blessed to sit with her and chat and laugh and not have to "visit" her cancer. I only wish I could do something to lessen the trauma of the days I know are around the corner.

...By the way I was looking at the cancer drug called "Ukrain". Thoughts anyone?

Bye for now

[PCUK Nurse Jeni]

Hi There,

Could you email me with the name and strength of the enzymes you got from the alternative place, and also, the exact ingredients? Thanks.

I have not heard of them ever prescribing such enzymes, as these are part of a conventional medicine treatment, and I want to make sure you have been given the correct medication.

I have not heard of the drug you mentioned. Is it the correct name/spelling of the drug, so I can look it up?

Email address: support@pancreaticcacner.org.uk

Many thanks,

Jeni.

[Nardobd]

Hi there

Don't ever apologise for rambling/venting/asking/informing - that's what the boards are for! We all stick together here and help as much as we can when we can.

Ukrain is an anticancer drug based on the extract of the common weed, greater celandine (Chelidonium majus L.). This plant contains a range of alkaloids, most notably chelidonine, also known as benzophenanthridine alkaloid.

Research on Ukrain started about 20 years ago. Meanwhile, numerous in-vitro studies animal experiments, case reports, and case series, have emerged. Collectively, these data suggest that Ukrain has anticancer activity in a wide range of cell lines, which could be of clinical value.

BioMedCentral conducted a critical evaluation of the clinical trial data in the form of a systematic review in 2005 using seven trials which met their inclusion criteria. Without exception, their findings suggest that Ukrain has curative effects on a range of cancers. However, the methodological quality of most studies was poor. In addition, the interpretation of several trials was impeded by other problems.

Their conclusion was

"The data from randomised clinical trials suggest Ukrain to have potential as an anticancer drug. However, numerous caveats prevent a positive conclusion, and independent rigorous studies are urgently needed."

Hope that helps.

Nicki

[louiepc]

Hi

I just wanted to say how sorry I am to hear about your mum. Please don't worry about rambling, ranting, or asking questions. I have had some fantastic help and advice from these boards.

My mum has PC too, it's truly awful the way it takes hold.

Take care.

Louie xx

[ma2houra]

Good evening all,

What a day..stuck in school with my kids all day doing reports interviews and the like, seriously all I could make out was the teacher was moving his mouth, sound was coming out but I had no clue in hell what he was saying, just kept eyeing the clock thinking "I gotta get back to my mum!!"

Iam sure he was saying something important but since mums diagnosis I've developed a pattern of drop kids off at school each morning and speed over to mums house...I drive soo fast and she's just like 5min away, don't know why I do that!! give her breakfast and clean up a little then sit down with her and see "how she's doing". About 2pm race back home to cook something light for dinner, pick up kids from school, feed them, wash them, listen to their day as i fold washing or hang washing (washing NEVER ends at my house) then race back to mums after tea to see she's still alive.

Been doing alot of racing around, like everything has all of a sudden become urgent, nothing can take up any time because I feel like that time is owed to mum. Is that weird? I seriously gave everything up in my life or put it on hold because I dont want to miss a single second, I want to soak in every second with her, every minute is precious now.

When I think about it it's really silly because most of the time she's either resting or sitting quiet, it's not like we are making unforgettable priceless memories together, I just feel secure being near her, even if we don't say a word to each other.

The time Im not there I miss her soooooo much like Iam sort of trying to get used to the idea that sooner or later she wont be there... I am soo cruel arn't I.

How are you all doing in the situation you are in? I hope you are having some warm sunshine and blue skies, smiles and good times. That's what I wish for all of you suffering with your loved ones from this nightmare. As much as I wish my mum was well, I also wish for your mum's and dad's to be well. PC is not fair, it doesn't give you a chance to try, it's a blow that pierces straight to the heart because hands are tied, frustration settles in and emotions are ripped apart.

With all the things on offer regarding medicine and the like for PC, each has it's own list of pro's and con's. Some offer promising hope others are just fake and downright inhumane. I know somethings we are trying are not proven, or the stats dont quite make them the "best choice" or reaserch is not complete whatever whatever but whats our other option?????

I'll be frank, Iam clutching at straws and willing to take any little bit of hope out there. Honestly I dont think Gemcitabine is helping because her pain has increased when it should of decreased. She's taken on board ALL the side effects around, is suffering from everything ten fold due to her drug sensitivities so if alternative helps even a wee bit, then alternative it is. Jeni you asked about her enzymes. Here is a run down of the product. Its called Digestaid, made by a company called Eagle. Ingredients are:

Each tablet contains:

Betaine hydrochloride 300 mg

Pancreatin (porcine) 200 mg

Pepsin (porcine) 100 mg

Sodium tauroglycocholate (bovine) 50 mg

Papain 30 mg

Bromelains 20 mg

Potassium (as chloride) 13 mg

Chromium (as amino acid chelate) 200 mcg

and powdered:

Gentiana lutea (Gentian) root 20 mg

Foeniculum vulgare (Fennel) seed 2 mg

and essential oil:

Peppermint oil 1 mg

and regarding the Ukrain I found this, (don't know how viable the source is):

http://www.ukrain.ua/mainnew.html#pancreas.

Like everyone in this situation..we are trying..and try we will, life is precious and giving up is not an option for me at the moment.

Rambled till your eyes dropped off ey?! hehe sorry (again)

Thanks all

[PCUK Nurse Jeni]

Hiya,

I don't think these enzymes would be sufficient for pancreatic enzyme replacement. Your list mentions Pancreatin 200mg. Does it specify the amounts of protease, lipase and amylase contained in it? This is what is needed for the digestion of foods, especially fats, but all food really.

Usually, large amounts are needed, and often these need to be increased as time goes on, or with a more fatty meal. I am going to email the contents of your list to a pharmacist, and ask if this will be sufficient. I will email you with the results.In the meantime, are the symptoms improving?

Kr,

Jeni.

[louiepc]

Hi ya

A lot of what you say, I can relate to. I have three children and find myself thinking, right their in school today, as soon as I drop them off, I can go to Mum. I too rush everywhere. Constantly rushing, to the point that I think I may see myself coming the other way one day - lol.

It's not weird - well not to me.

Luckily, we have managed to get some really lovely times with Mum for the our memory banks. Birthdays etc. Unfortunately time is running out for us, but make as many memories as you can, like I said to my children, no one can ever take them away, and when you are feeling sad and low, those memories can carry you through.

Not sure if I would advise looking at my posts, as like I said Mum's time is running out, and some of it, isn't pleasant reading.

I am worrying myself silly over the fact that as of next week I have the children with my 24/7 and being Christmas, no one is going to want to have 3 extra kids hanging around. I'm sure things will work out ok, but trying to juggle normal family life, with something like this is extremely hard. My poor children, have put up with so much. They are palmed off to friends at a drop of a hat, and have a mummy who is very ratty and shouty. Anyway good luck hunny.

Louie xxxx

[ma2houra]

Hey all,

Just got here (mums house) and she's weak and in heaps of pain ((

So i took over cooking breakfast and she went to sleep, bad days are expected but not welcome, Louie i hope ur mum is doing ok, i really feel for u and her. This forum is an amazing place to connect seeing others in the same situation lessens the feeling of isolation and lonleyness. I can relate to you..also being ratty and snappy and usually at the poor kids or hubby!

At the end of day we are not made of steel nor can we control every situation..thats what i keep telling myself anyway, so we do the absolute best we can and leave the rest to God to help out.

Jeni thank you soo much for looking at the enzymes, you are right I dont think they are enough for mum either but am unsure as to what would be the better substitute, she still has lower abdo pain and pain at diaphram area, had little/no appetite and feeling full early, is dropping weight fast and extra tired. The right mix of enzymes could help a little I think.

Thanks again

[PCUK Nurse Jeni]

Hi,

I have sent you an email concerning the enzymes.

KR,

Jeni.

[ma2houra]

Hi Hi,

Hope everyone is well and keeping sane this time of year.

Thank you soo much Jeni for the information on enzymes, mums next got chemo Monday so I'll see the onc and ask for a script. I mentioned it to her and she was excited that perhaps something might help and she would feel better...

which leads me to today. Being end of year and holiday season (and stinking hot summer) mum really wanted to go have a bbq in the park. All week she has been reminding me and the rest of our family. For some reason she was hooked up on the idea that Saturday we must all go to the park. Naturally we all agreed, my sister and brother pushed back other plans as mum was soo insistent...yesterday and today pain level was unbearable.

Poor mum for the past couple of days she's been downing liquid morphine, endone and up'd her fentanyl to double the dose and her pain is measured in moans and yelps.

Naturally she was drugged up to the point she was really dizzy and nauseated, and still, with one hand on her tummy and the other on her hip she dragged around the house moaning, and reminding us that she wanted to go to the park.

It was really awkward, we didn't have the heart to refuse she'd been looking forward to it all week and we clearly couldn't go, over 35 degrees Celsius we would all get heat stroke.

She came to a compromise, we decided to have the bbq at my house, that way we could be inside and outside as suited us all. Mum agreed but barely. Weak from constant pain she came sat down ate a few small bites then flopped on my couch in front of the kids channell, I think she watched wiggles for about 10 min then apologized and left.

We felt soo deflated. The sadness overwhelmed me, I felt so bad for her. She hasn't had many good days at all, its unfair. I know many cancer sufferes lead almost near normal lives, yes in pain and suffereing side effects of disease and treatment but not all the time every day.

Anyway that's my whinge for the night.

[Nardobd]

Hi

I'm so sorry to hear that the bbq didn't go as planned and that your Mum is in so much pain.

I really hope the enzymes help your Mum and that she has more good days so that you can share that precious time with her and build up some wonderful memories.

Love

Nicki

[ma2houra]

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!

Edited December 24, 2011 by ma2houra

[ma2houra]

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]

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]

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]

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]

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]

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]

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]

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]

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