MY MUM

[PCUK Nurse Jeni]

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]

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]

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]

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]

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.

[Nardobd]

Hi

Ted didn't want to fly when first diagnosed but I eventually persuaded him and we got away for a short break to France this year. He found it perfectly ok, but we're only talking about a short flight.

Rather than a one-night stoppover en route have you thought about doing a 2 or 3 night stop somewhere. That would give Mum more time to recover and she will be more able to cope...you know what it's like the first night in a strange bed - sleep never comes easily.

Keep us updated.

Love

Nicki

[ma2houra]

Been a while,

mums pain cries can be heard in another country and her nausea bouts reflect being swallowed by the ocean

symptoms were NOT being controlled well at all by her oncologist or pall care team.

In sheer desperation and frustration we checked her into a clinic in Germany to try some alternative treatments like hyperthermia with low dose chemo and a range of other therapies.

After day 2 she could leave her bed and eat a full meal .. after week 2 she was her old self again, if nothing buy control her symptoms effectively then it was worth every cent.

Seeing her turn around gave us all hope..she was feeling SO much better looked like she was back to her old self!

We (her family) dared to think this treatment was slowly curiing her. Holding our breath and with butterflies in our tummy we anticipated the result of her tumour markers.

On diagnosis: 130

On arrival at clinic (3 months later) : 550

Six weeks later (still at clinic): 1400!!!!!!!!!

1400!! almost a threefold increase. WOW how could that be. she's never looked or felt better since learning she had PC. We feel so deflated.

I just need to vent, sorry for going on and not making much sense. Whenever we take one step forward we're hit with ten steps back. I should just accept my 55yr old mum is going to die but I cant.

[PCUK Nurse Jeni]

Hi Ma2houra,

It is really good news that your mum has begun to feel better. This is amazing.

In this job, we treat the patient, not just the scans, blood tests etc...

If she feels better, then this is more important than a blood value, especially for your mum.

I think it is good to hold onto these positives, and not solely think about the results. Sure, it is disappointing, and it is understandable that you feel flat about it, but if your mum is well, and feeling better, then grab it with both hands.

Hope she continues to make progress. Sounds like Germany was great. Would be interesting to hear what they did, exactly.

Kind regards,

Jeni.

[louiepc]

Hi

I don't really know much about tumour markers, as mum never had this.

What I would say, is that if your mum is feeling better - fantastic, things with this illness take a downwards turn all too quick. Hold on to all the positive aspects, like mum feeling good, these are the times that will get you through the hard times.

Make stacks of special memories, and know that you have done everything in your power to help your mum, lots of love and best wishes.

louie xxx

[laura]

hi there, what a wonderful result for you all,try to judge how mum is by how you see her, though they scan bri every 12 weeks, the oncology team are more interested in how hes been, how he feels etc. they say the scan doesnt give them this information.

try and take jeni's comments on board, am sure you will, you could use up precious time and energy worrying about something you cannot change, i agree with louie, enjoy every precious moment that mums feeling good.

good luck laura x

[ma2houra]

Hi all,

SOrry havent been here in a while. hope all is well or at least as best as can be.

I have a question (or two)

After poor symptom control for mum's PC we all thought she was nearing end stage and didn't have long to go..however after changing onc. she is now feeing heaps better..almost like her old self.

Her pain, nausea and depression are under control, by that I mean almost non existent.

Here is the question...

How can she be feeling and looking sooooo good yet have her tumour markers spike from 530 to 1400 to 2500!!!!

So that must mean she is ONLY doing well to control symptoms correct? Not her cancer getting smaller?

She is on the Folfox regeime and also hyperthermia local and whole body.

Anyone have any information about this?

How have cancer markers been with you/your loved ones?

How high do they usually go before its the "end"

On diagnosis mum's markers were 130 and she had/has mets to liver and lungs.

all info appreciated. thank you

[PCUK Nurse Jeni]

Hi Ma2houra,

Great news to hear that your mum is doing well! What a turnaround, and so much better for her.

Tumour markers are not always indicative of what is going on, although can be good indicators of what is happening. However, they can't and should not be taken as a "stand alone" result, and should be looked at in combination with scans, and how the person is in themselves. In medical practice, how the person feels is always an indicator of how things are going. So, even if other tests are saying one thing, the concrete evidence is how the person sat in front of you is, and you find this out by clinical examination and careful questioning as to how the symptoms are. In your mum's case, she is a lot better. Also, ca 19.9 levels can sometimes fluctuate ie: they can go up, then come down, then go up again, so they are not totally reliable. In some patients, the tumour markers follow a direct pattern ie: are high, then drop when on chemo, then maybe rise when the person feels worse or the disease starts to grow again. As such, these can tell us that for that particular person, the tumour markers are fairly reliable to indicate tumour activity again. Although her markers are fairly high, they can go a lot higher. The highest I have seen was 65,000. There is no set pattern for how high it gets before "the end", as you put it.

I think to really focus on the fact that your mum is doing so well and the fact that her symptoms are really settled is the way forward. This is the best news you could hope for, and if her quality of life is better, then this is very positive.

Here is a link to Hyperthermia http://bit.ly/IFlt6j , which explains it well. It is given in combination with other treatments ie: radiotherapy or chemotherapy. It is intense heat treatment which dilates the blood vessels around the tumour, causing red blood cells to spread into the tumour. These are rich in haemoglobin, which carries oxygen. The chemo then reacts to the high levels of oxygen in the tumour and causes tumour death. Folfox is combination chemo treatment used for secondary pancreatic cancer sometimes.

I hope your mum continues to do well.

Jeni.

[ma2houra]

Hello all,

Sorry i havent been here in a long time, i have been quietly reading all the posts and catching up on every ones stories.

Im heartbroken reading about all the suffering and pain as i know all too well how it feels. Cried for days over Juliana, it saddens me to think of her family struggling without her and for all those who lost loved ones to PC.

Since i was last here lots happened...we flew mum to Germany in a desperate effort to cling to hope. She had alternative and chemo treatment for about 5 months there. Us kids took turns staying with her in the clinic so she was never alone, mum did SO well there, she was thriving although her cancer got worse.

Its spread to her abdomen now and shes struggling with ascites

Twice a week she goes into hospital and has around 4ltr drained.

I know this is not a good sign..the end is nearing and we are all emotionally spent, i wish i knew when.

Mum is tired of being tired and sick of being sick, shes always going on about wishing she would die quickly. Shes majorly depressed i know and all i can do i pat her arm and cry in the other room.

Ranting on and on i should stop now

Thank you all for being such a great support.

I pray for mum and all of you suffering from this cancer,

We wait patiently for better days

[DRAD3]

So sorry to hear that your mum is not doing well. She must be so tired of fighting and you must be exhausted helping her in her battle. When I first came on the forum when my husband, Gary, was first diagnosed, it was so helpful. I suddenly felt part of a very caring family where everyone understood everything I ever said or thought. It has been quite a comfort, even at times, like you when I have just read how others are getting on. I remember how much hope Ellie's Brian and Nikki's Ted gave me and how devastated I was when they lost their battle - I cried for days for them too. As much for myself as for them because it all pointed to the hopelessness of it all. I'm not being much help, am I? I just understand the point you seem to be at where you know it is hopeless and I am so sorry because I remember how awful that is and how brave you need to continue to be. I wish you lots of strength - know that you are not alone and your mum will be OK. I like to think that just as we are all linked together on the forum trying to help one another, our loved ones who have passed are waiting somewhere close by to help your mum and others like her. Take care.

Love to you and your family

Deb

x

[charney]

I am so sorry to hear about your mum, this truly is an emotional roller coaster of a disease. I lost both my parents to Cancer, although not to PC and the stress of watching a loved one suffer is mindblowing. My Mother in Law has PC and at the moment we are very lucky in that she is coping quite well and Oramorph and diclofenic are taking the back pain away. She too is tired of being sick and tired of not being able to do the things

she used to and gets very low sometimes. I really feel for you and my thoughts go out to

you and your family.

Take carexx

cheryl

[Midnight]

ma2houra wrote :

> 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

To help me with nausea after trying various tablets and capsuls agreed with sugestion from my GP to have a syringe driver put in plus injections of morphine 2-3 times a day and tried various medications eventually 10days later am now getting relief from nausea, reflux, and actual vomiting I had some soup today and a chocolate both stayed down took 2creon 15mins before snd 5ml Oramorph after the food

[Midnight]

remembering your Mum yourself and family in my prayers xx

[ma2houra]

thank you all for your loving kindness and heartfelt words,

i never knew how much this forum helps us emotionally until I read some of the posts and struggles of others.

I close the laptop with a sense of security and a feeling of calmness...

is it because I connect with what others are going through?

I know the feeling of being afraid and sad and angry at life and at cancer.

All of the above.

Its out of trial that generosity peaks, and I am certain that this forum has brought together all those out there who suffer to give despite being in need. My family and I are really greatfull for having this provision.

My mums not doing too well today, she had another fluid drain (ascites) and the doctor was a little heavy handed and hurt her. Its soo sad to see her like this. She just sits in bed with all the sorrow in the world painted on her face, tired of living and not yet ready to let go.

When her body is in pain pills and drugs help ease that but when her heart is paining no amount of morphine seems to help and its this that I fear most. I keep saying to myself over and over that as long as she still has that spark in her eye's I can cope with all that pancreatic cancer dishes out but once that spark starts to fade we all sort of slow down and ease up to reflect on reality.

I wish I can have one day with my mum before cancer struck...I would tell her how much she means to me, I would hug her and never let her go, I would take her out into the sunshine and we would laugh together. Just one day without disease...

All those words are said daily now and hugs are given just as hard but its different, I dont know why or how to explain, it just is. Its like cancer built a wall between mum and me and now matter how close i get i cant seem to break through.

Pain and discomfort, fatigue and nausea seem to dominate her mind and heart lately, she can hear what Im saying but no one's really home, its sad and on occasion I stand back and watch her sleeping and feel like I really miss her already although she is right there. I miss the person she was. I miss having her to lean on, talk to, draw strenght from and go to for comfort. I miss my mum.

I know she doesn't have long to go. Weeks or a few months if we're lucky. I suppose it feels like she'll be around forever. Its mum, mum is always there, ready to help out and ready to love. It's selfish I know but I want her around even if she's sick. It's hard to let go.

If anyone can find it in their heart to tell me how they went in the last few weeks before their loved one passed on I would really love to read your story. I don't know if what I feel is normal, am I being selfish? and what can I expect close to the end? Not knowing is really frighting.

thanks for listening to me ramble

xo

[NICOLA]

Hi ma2houra

Been reading your posts and you really have been through hell, your poor poor mum, my mum too is nearing the end, I think from reading loads of posts on here every story is different. My mum has said she wants to go into the local hospice towards the end so they can support her and give her what she needs, but from past experience things dont go to plan. I just hope and pray that our mums slip away peacefully with us around and no pain (god I cant believe Im typing these words) I still cant believe my mums not going to be here. Taking it day by day and making memories, Love Nicola x

[ma2houra]

palliative care doctor just left.

He told us mum's cancer has spread to her tummy & intestines and her liver is the size of a basketball.

mum took it like a trooper

we all feel flat

life sux

[charney]

I am so sorry to hear about your mum,

my thoughts are with you.

xxx cheryl

[laura]

hi there, so sorry to read your post, such a beastly rollercoaster of an illness, i really hope that your lovely mum is well cared for, its the least we all want and deserve.

sending you wishes of strength and love,

thinking of you all. laura xx

[ma2houra]

I am sitting in a room full of people..the overwhealming smell of roses is suffocating.

Listening to the small talk makes me sick, i dont care about politics or diets or the kind of work he does or she does.

I lift my head and glance over at the picture of my mum..on my wedding day.

She looked stunning, all i can think of is she is better then ALL the people in the room.

...she's gone

Passed on tuesday in my home in the arms of my sister and I. That was her wish and I feel privelidged to have been able to offer her that. She loved my home, loved the open plan and the garden. All she asked was to stay home. Palliative care were great they would come almost everyday and without their support i doubt if it could of been possible.

Out of trials come endurance, we sure endured!

The last two weeks of my mums life were hard to bear.

She became confused...not making sense, then she stopped talking only saying a few words here and there. Occasionally she had lucid moments and i would be so happy that my mum came back. I would drop everything and sit with her and she would tell me how much she loved me and how proud she is of me, then she was gone again.

It broke my heart because I missed her already.

Then she bearly got out of bed, her weakness led to deaper depression. She was sad over her lost independance...and I was sad over her sorrow. Three days before she passed she stopped eating all together.

It was then i knew that was the point of no return. All night her breathing would be laboured and all night i would be in and out of her room moistening her mouth and turning her and holding her hand.

The last night she developed a horrible rattle in her chest and then hiccups. Each time she would hiccup i would burst into tears.

We hoped the sedation would help her pass peacefully but two hours before she died she had a surge of energy. She sat bolt upright and tried to get out of bed. After not talking for days she yelled out "get me up!"

Within 10min the nurse arrived and sedated her..and 15min after that her breathing slowed right down.

Then in a blink she was gone.

I feel so lost and all this feels sureal. I know after the funeral it will be harder.

The world had lost a great person...i miss her already

[NICOLA]

Hi ma2houra, Im so sorry your mum has gone, I lost my mam 2 weeks ago to this awful cancer, it seems most stories on here follow the same pathway, we try our hardest to help but I just felt like a spectator watching my mam fade away.

My mam too had a surge of energy 1 hour before she died the palative care nurses had just settled her then left when she became very restless wanting to be up and shouting out for help then she died with my dad and I holding her hand.

2 weeks on the only comfort I have is that she is now at peace. I believe a mother and daughter bond is the strongest of all. I also found great comfort by making a photo album and I passed it around all of our family and friends after the funeral, everytime I go to see my dad I have a flick through it.

You have done your mum proud and remember she is still part of you xx

[Support Team]

I am very sorry to hear that your Mum has died. Please accept my condolences on behalf of Pancreatic Cancer UK.

Anna