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

[moderator]

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

[moderator]

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

[moderator]

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

[moderator]

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