topic Re: My mum with pancreatic cancer stage 4 and terminal in Diagnosis and treatment

My mum with pancreatic cancer stage 4 and terminal

Keri — Sun, 05 Mar 2017 14:06:43 GMT

I'm not quite sure where to start, and it could be a long post, but here it goes:

6 weeks ago my beautiful mum was diagnosed with pancreatic cancer which at that moment we only knew it has spread to her liver. I will always remember that day and of all days, Friday 13th.

In the past 6 weeks it's been a huge roller coaster of not just emotions but events. 2 weeks after being diagnosed her eyes turned yellow and she got jaundice. My mum was admitted into hospital for a stent which they couldn't get in on the first go. Second time round a few days later finally they came with good news. A week later a trip to the oncologist as planned which they could offer chemo although he did say she was lucky to have that stent put in otherwise she either would died, been on her deathbed and refused chemo due to the toxins in her body. The oncologist went on to say that it is stage 4, widespread and terminal. They are not looking to cure but to hopefully stop the growth and symptoms.

a few weeks after, mum had an appointment for chemo which she started on Friday. Today of all days have been really hard to see.

my mum was a positive person. Everyone's rock and go to person for anything. Always active and going 100 miles an hour. Since we all found out about the cancer, mums the complete opposite. She's tired, in pain with bloating and cramps, can hardly eat and lost too much weight for anyone's liking. Mum has always been slim but now she's turning into a skeleton to the point you can see her spine. It's absolutely devastating to watch.

At this moment, I feel like what's the point of chemo if this is going to be her "quality of life". I hope the chemo works to help her and gets back on track even if it's just a little.

I don't really know what to do or say I know I can't help her but be there for her.

between juggling work (full time) and being a single mum living half hour away, I feel so overwhelmed with daily life. By the time I get to mum mums during the week, she's tired from the day she's had with her mental state and what her body is doing. That conversation is slim to none.

I stay over every weekend to spend time with her but this weekend I've felt it's even harder to see what she is going through. She's slept most of today. Just sitting around is driving me insane thinking this is just horrible, you call this life and living?!?

I know there's not a high chance of mum surviving a year. Which is hard to come to terms with. But who knows she could last longer than we think.

i was thinking to myself today how much we are in a bubble until we experience something so tragic. I actually thought cancer was rare but what a shock it's been to realise so many people are going through this.

Today i have mix emotions. I don't want my mum to be like this until either the chemo stops working or she can no longer handle it. Does chemo help to feel better? Or will this just get worse as it goes on?

her cycle is 3 weeks on 1 week off. Mum has to go 1 day a week for 2 hours of chemo.

i don't want to loose my mum and I know I will but I also don't want to see her get worse and have that as my last memory of her.

im positive around my mum and try and lighten her mood with different things. I can't be down in front of her because that doesn't help anyone at all.

I guess i dont know how to look on the bright side at the moment. Today has been a hard day..

I hope there are other people who have felt the same way and can relate. Today is one of those days I think.. Tomorrow will hopefully be brighter..

Re: My mum with pancreatic cancer stage 4 and terminal

Susan_CCNSW — Mon, 06 Mar 2017 02:00:44 GMT

Hi Keri

I am very sorry to hear about your mum’s cancer diagnosis. It must be very difficult to see your mum experiencing so much discomfort and pain. I’m wondering if your mum has been assessed by a palliative care team. Palliative care is not just about end of life but about improving quality of life and trying to ensure people are as pain free and comfortable as possible. You (or another family member) may want to talk to your Mum’s treatment team to discuss her current chemotherapy and engaging with palliative care.

As well as dealing with your mum’s diagnosis, it sounds like you are trying to do a great deal and it’s understandable that you are feeling overwhelmed. Cancer Council NSW have a number of services that may be helpful to you.

You may find it helpful to speak with an individual counsellor. Our counsellors have extensive experience working with cancer patients, family and friends and you can access 6 sessions either via telephone or face to face.

We also have a Telephone Support Group (TSG) for people caring for someone with cancer. The TSG provides an opportunity to regularly talk with others in a similar situation so that experiences, information and coping strategies are shared.

Both of these services can be accessed through calling the health professionals on the 13 11 20 support line who can also assist you with other cancer information and support that may be beneficial for you at this time.

Alternatively, you can contact the Telephone Support Group on 1300 755 632 and the Counselling Service on 1800 734 398. If the call is not answered immediately, please leave a message and the team will get back to you.

Take care and kind regards

Susan

Re: My mum with pancreatic cancer stage 4 and terminal

kj — Mon, 06 Mar 2017 08:15:34 GMT

Keri

As you are experiencing Pancreatic Cancer is a very confronting disease,at stage 4 and terminal devastating for all family members,hopefully her chemo can alleviate and help with pain and possibly shrink tumours with a better quality,but we all respond differently to chemo and its side effects,I remember from my chemo for her to drink plenty of water if possible it flushes toxins quicker.And just try and take it one day at a time you also have to look after yourself very stressful time.

Re: My mum with pancreatic cancer stage 4 and terminal

Keri — Mon, 06 Mar 2017 14:56:54 GMT

Thanks Susan. We have an appointment on Friday with the oncologist for a review. I'll see about speaking with him quietly or one of the nurses about palliative care. I thought that was more for end of life which my mum would freak over or I'll give them a call on my break at work.

We had to take take mum to hospital today as she was in so much pain. She's taking morphine which may have to be increased. So we shall see.

I live in perth so not sure how the counselling would work? Although the hospital mum is with offers this for us. I have support from my brother and we discuss quite a bit. Doesn't help that I can't open up to strangers! Lol

one step at day a time though. Hopefully mum is pain free soon so she can get back to normal to a point. I will discuss my concerns with the oncologist though and see what he can do.

Re: My mum with pancreatic cancer stage 4 and terminal

Keri — Mon, 06 Mar 2017 15:01:10 GMT

Hi kj,

mum keeps trying to eat and drink but it's becoming more difficult with the bloating she gets and fullness. Did you experience this?

I do hope the chemo works and helps also doesn't make her too sick. She's starting to get the vomiting now unless it was just a once off.

its so hard to see her go through this and there's nothing you can do to help. I can't imagine what my mum must be feeling though.

Re: My mum with pancreatic cancer stage 4 and terminal

kj — Mon, 06 Mar 2017 21:20:44 GMT

Hi Keri
Yes I did experience bloating and fullness,It is unfortunately a symptom of PC .I now eat very small meals, as Susan wrote palliative can also help in controlling pain and try for a better quality for your Mum.I do hope the vomiting is a one off, everyone responds differently to chemo I remember my body did not cope too well where friends had minimal side effects.I hope they get the pain under control quickly.Its very hard physically and mentally for those diagnosed and family members.
kj

Re: My mum with pancreatic cancer stage 4 and terminal

Keri — Tue, 07 Mar 2017 00:03:09 GMT

We did wonder whether is was a Symptom of this. Doctors yesterday were going to do testing to see why but they called the oncologist and he said not to do anything.

Mums notnot holding up well. I think she's in extreme denial and doesn't want to face it. We have her will to sort out and finances which she doesn't want to deal with. My dad isn't encouraging with anything at all. It's like mums already giving up. She didn't want to do chemo but she's doing it. I don't want to have a hard conversation with her and get her upset but my brothers tried and she doesn't listen so I think what's the point. Staying positive it's getting harder it's like We are just watching her loose hope and die slowly. I kinda think why doesn't she let nature take its course. I feel that's selfish in so many ways but I just want her to be happy and do what she feels best. I would be beside her no matter what happens or decides no more chemo. I just want mum to be more positive as well and think I'll make the most of the time I have.

I I do think I need to speak with someone and get some things off my chest but I also need direction on how to solve some things which councillors can't do.

Re: My mum with pancreatic cancer stage 4 and terminal

Keri — Tue, 07 Mar 2017 00:05:03 GMT

Sorry to pour things out on you. I don't have many people to turn to and my brother just gets angry with the situation.

Re: My mum with pancreatic cancer stage 4 and terminal

Susan_CCNSW — Tue, 07 Mar 2017 01:47:36 GMT

Hi Keri

It’s good that you have the appointment with the oncologist on Friday. You might find it helpful to write down any questions/concerns you have to take with you. In times of stress we often struggle to remember all that we want to ask and this can be a very helpful strategy. Definitely discuss palliative care, it is so much more than end of life. It involves looking at all the needs of the patient and also involves supporting the family and carers.

On the home page of this Online Community you can find links to services in other States as well as National programs.

Cancer council Perth have many similar programs to Cancer Council NSW and the link below takes you to information about their counselling and support services. When you are connected with the right person, you may discover you open up more than you think.

https://www.cancerwa.asn.au/patients/support-and-services/cancer-counselling/

You can also call the 13 11 20 helpline number and you will be connected to the Cancer Council of the State you are calling from.

Take care

Kind Regards

Susan

Re: My mum with pancreatic cancer stage 4 and terminal

Keri — Thu, 09 Mar 2017 09:18:31 GMT

Hi kj,

Question; with the bloating and fullness where you able to manage and relieve this? Mum also gets pains and she says it's really uncomfortable it's like a baby is kicking but a lot stranger to.

Re: My mum with pancreatic cancer stage 4 and terminal

kj — Sun, 12 Mar 2017 11:48:56 GMT

Hi Keri

sorry for late reply been away camping long week end no net,I was not able to get rid of bloating and fullness still have it moderately ,example one weetbix fulls me up for brekky any more and bloating hits hard nothing seems to help and I know it will be worse for your mum.Pain wise I was different I had pain radiating from back through to chest relieved with morphine,also stomach and diareah pain I did not match pain described by you but all have different pains and symptoms,where is actual pain from which area,I have residual pain after whipple right side under rinds which I wear a hernia band for it helps.Sorry can't offer explanation.

Re: My mum with pancreatic cancer stage 4 and terminal

Keri — Sun, 12 Mar 2017 13:00:33 GMT

All good 😊

the more we hear the more I realise how different everything can be.

mum gets the pain in the upper abdominal area and bloating also gives mum a weird sensation. We thought if that could be controlled she could be able to eat a little more. Morphine does help but last week she was someone so different we found out it was partially the chemo but more of the morphine. Mum didn't overdose but was taking them incorrectly. She has two types, fast release and slow release but the oncologist helped put a plan in place on Friday regarding all her tablets which makes total sense.

She she has a really good day yesterday but today the pain came back and she could hardly eat but found drinking water with fresh lime she can get down really easy.

trial and error from now on I think. Mum is going to see the dietitian soon but I think it will be for supplements.

I I also spoke to mum about palliative care today and she's going to bring it up with the oncologist on Friday. So we shall see what he says. What ever can get us all through it, have to at least try!

Re: My mum with pancreatic cancer stage 4 and terminal

me_mum — Fri, 21 Apr 2017 22:32:16 GMT

Hi Keri, after reading your posts I can actually say what you have said is exactly what I am going through with my mum. Mum is now on her 4th cycle of chemo, she weights around 45kg, she struggles with what to eat and on odd occasions she has tummy pains.

I've decided to stop work to care for her as I know anything can happen at any time. She was admitted to Hopstial a few weeks back because her temp was high, and she hates hospitals...

Mum takes Ensure a meal supplement when she can't eat, hydrate lite ice blocks if she feels her temp is going up, and just rests as she has lack of energy.

It's hard seeing her like this, and I know it's going to get worst...

Take it day by day, and make sure you look after yourself too which I know it's hard too do. Life has changed for me now and I know now I have to change with it 😉 Mon

Re: My mum with pancreatic cancer stage 4 and terminal

Keri — Sat, 22 Apr 2017 00:40:24 GMT

Hi mon.

wow can't believe they are so similar. So sorry to hear about your mum. So hard to see them go down hill.

Mums nevee had a full cycle of chemo. After every chemo session her temp rises and she is admitted into hospital. First time it was just an infection, second time it was an infection and they found blood clots large and small in her arteries of her lungs. Mums currently in hospital at the moment with another infection and an abscess on the liver. It's never ending!! From the beginning she had this bloated tummy which over the long weekend has grown which is why she went to hospital this time too. But doctors aren't doing anything to that until they get rid of the abscess incase it spreads the poison. They did find that tje bloated stomach has fluid but they don't know what has cased this.

We have an oncologist appointment on Friday I missed the last 2 so will be good to go this time.

We we also found out last week my grandma has cancer too. Not sure what type but she's 90 now and not going ahead with chemo. So me my brother and daughter are heading to England to see her and my grandad. Going to be hard knowing it's our last time ever seeing them (unless on Skype)

not even half way through the year and we keep getting hit. Such is life though.

How is your mum doing mentally? Good results with chemo? Any side effects or just tiredness?

Mums also lost so much weight. The oncologist said at the start, you know when chemo is working when you put weight on but that's not the case. I can't see mum doing this any longer than christmas. I think when my grandparents go I think mum might stop chemo, which I wouldn't be against. It will be hard to loose her but at least she wouldn't be in pain and discomfort.

Thankfullymy my brother and dad are around. My mum would be furious if I stopped work, but my work is great with time off I need. I've given them some short notice to go to England for 2.5 weeks. (I finally found a job where I like with great people and don't want to loose it either) I know when mums time comes I can have time off to help her.

Oh im with you on the change thing! I still feel like it's not actually happening even though you can see a lot of changes. I guess that's the mind protecting itself.

how are you coping?

Re: My mum with pancreatic cancer stage 4 and terminal

me_mum — Sat, 22 Apr 2017 06:59:02 GMT

So sorry to hear about your grandma and yes life can change so quickly...

I know what you mean about not seeing them go through pain and yes if mum was at a stage where pain was everyday and it was because of chemo i would be asking her if she would want to stop and I am sure she would say yes.

She will be having her port put in beginning of May as the clinic is finding it hard now to find a vein for chemo in her arm.

I am going ok, I've decided to resign from my job as it's too demanding and I would rather be by mum's side as much as I can.

My dad is around and he does what he can, my brother on the other hand is a lost cause and doesn't care, selfish and only thinks of himself...

This all started Sept last year when we all just came back from my 40th BDay in Hawaii, little did i know that would be my last trip with my mum.

Keep me posted on how your mums going, take care Mon

Re: My mum with pancreatic cancer stage 4 and terminal

Keri — Sun, 23 Apr 2017 16:02:02 GMT

I've been thinking of breaking my lease to live closer but I'm really undecided. Once mums gone then I might as well stay were I am, 5 minutes from work.

mum was finally let out of hospital today with silver chain coming round to give mum her antibiotics. She's so doped up on medication. Falls asleep so easily. I do wonder whether it's the meds or the final stages. She can hardly walk, doesn't really eat and only drinks a little. Her stomach is so large it looks like she's 9 months pregnant. Her ankles are really swelled up from the fluid. I give mum a leg massage every time I am with her which she says it helps. I feel the end is closer than I think. I doubt she will be here at the end of the year. I feel like mum is waiting for my grandparents to pass before she stops it all. I can't really see how the is quality of life. I don't feel like I'm around enough and helping so much. My brother says I'm being silly and I've talked to mum about this before and she says what I'm doing is fine. I just feel so helpless.

glad there is some one else to help you. My dads quite like that but my brother thinks I need to cut him some slack. massive drinker but he has stopped after a huge bust up (again) although every chance my dad can he has more than a few beers. I know when mums gone he will be a full blown alcoholic like he was so I don't feel I should cut him some slack (that's a whole other story lol)

the last trip with your mum will be extra special then. Did you get lots of photos? My mum hates photos last one I got with mum was christmas. But that's ok with me. Mum and I were planning all these holidays just before she was diagnosed. One was to Dubai with the new theme park.

Re: My mum with pancreatic cancer stage 4 and terminal

me_mum — Sun, 23 Apr 2017 19:22:44 GMT

This is what I fear, mum going in pain and what to do when she is in alot of pain, currently she is taking Bascopan for tummy pain, she doesn't like taking medication but I am sure there might be something else she can take.

Your mum sounds like she is abit more advanced than where mum is at I am sorry I can't provide any further advice then to be there with her as much as you can so you will never regret anything.

I also have a feeling dad will go down hill too when mum goes, it would be hard to loose someone you have been with and relied on for so long.

Mum is now saying that she has tingling pains in her hands and feet, tomorrow she has her final round of chemo (4th cycle) my guess is they might reduce her treatment not sure.

When is your trip to see your grandma? It would be hard to leave your mum during this time.

Re: My mum with pancreatic cancer stage 4 and terminal

kj — Sun, 23 Apr 2017 22:31:48 GMT

Keri

Sadly The ascites fluid build up is not a real good sign at this stage of your Mums illness ,it can be caused by her liver not working properly.

Re: My mum with pancreatic cancer stage 4 and terminal

Keri — Sun, 23 Apr 2017 23:05:57 GMT

Mum was on morphine but she got strange and vicious on it so they changed it to this other pain killer called endone which helps to stop the pain. Mum says it's more discomfort but I think she's just putting on a brave face.

Shes only been diagnosed just over 3 months ago it's hard to believe really with everything going on. Feels like so much longer. The oncoligist arent looking to cure this so prolong her life. I think the cancer was in the tail of the pancreas from what my brother said last night and there isn't much they can do with that. It had spread to her neck lymph nodes, was defiantly in her liver as well but mum doesn't want to know any details where I do. So it's hard to ask doctors and the oncoligist.

mums never had the tingling. Is your mum only having 4 cycles? They say mums is long term and how long is price of string.

Im off on the 3rd may. I said to my brother last night I don't really want to go with mum being like this but like he said, mum would prefer we aren't there if she passes although I would always regret not being there. But we have to go, for mum.

Re: My mum with pancreatic cancer stage 4 and terminal

Keri — Sun, 23 Apr 2017 23:10:01 GMT

Hi kj,

i have read this but the Doctors havent diagnosed this yet. It's not priority at the moment until the abscess has gone from her liver.

Mum hoping it's something else but I doubt it. I know if it's left untreated it's not good either.

hopefully the oncoligist on Friday can give more answers.

Last week her bloods came back and they said her liver is working fine haven't heard anything since from mum, not that she's hugley with it to remember what they say.