My mum with pancreatic cancer stage 4 and terminal

[Keri]

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.. 

[Susan_CCNSW]

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

[kj]

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.

kj

[Keri]

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.

[Keri]

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. 

[kj]

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

[Keri]

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. 

[Keri]

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. 

[Susan_CCNSW]

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

[Keri]

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.