Mum newly-diagnosed with pancreatic cancer

[Raevyn]

Hi all,

In advance, apologies for the long post and Thank You for reading.

My Mum is 72, already not in the best of health (pacemaker, diabetes and legally blind) and at the end of January a CT scan for something else completely unrelated discovered a large mass in her liver. As no other tumours could be seen it was assumed it was a slow-growing primary liver cancer which had been there for years and plans were formulated to try chemo to hopefully shrink it, (surgery wasn’t an option due to her health and the amount of liver that would need to be removed) pending biopsy results.

We saw the Oncologist for the results just over a week ago now and got a shock-the liver cancer was secondary, not primary and most likely originated from the pancreas and/or bile duct and “migrated” from it’s original position to the liver.

The Oncologist also said it’s likely she has cancer in other parts of her body as well even though they didn’t show up on the scans at this stage.

Any chemo they could offer would make her sicker than she already is and only give her an extra couple months or thereabouts, so she decided against it.

She asked the Oncologist to tell her what the prognosis is either way and to not sugar-coat it.

He said on average, of those with her advanced metastatic type of cancer, 50% make it to 9 months with treatment. With no treatment, average is around 2 months.

Fortunately at this stage although getting worse, her pain is manageable but we know it will get much worse before the end.

We’re trying to make sure she can stay at home for as long as possible until toward the end, when she’ll go into hospice.

A Palliative nurse will be visiting her weekly from now on to check up on how she is going.

I’m the only one of my siblings who lives locally so am arranging all the paperwork for Enduring Power of Guardianship, Attorney and her Will according to her wishes and have been doing my best to help with meals, washing dishes, washing clothes and shopping while we try get practical home help put in place. I contacted family and close friends to let them know after finding out the news and am also keeping in touch with my siblings and updating them whenever there’s anything new to report.

Most days I’m so exhausted by the time I get home I manage to have something to eat before going to bed and completely passing out.

People tell me I’m strong and am being brave but I don’t feel like I am at all. I cry a lot before dropping off to sleep and have had some nights where I haven’t even been able to get to sleep until early morning (in one instance, until 6am)

I am on a Disability Pension myself, (Husband is my carer) on meds for a long term heart issue, have bipolar disorder and am unable to take the meds that work for me as they counteract the heart meds. I’m starting to find things a struggle and fear that everything will get too much and I will have a breakdown and not be able to help Mum anymore.

My Husband and Daughter have been saints, Husband driving Mum and I to appointments and being supportive of us both, understanding when I’m too tired to cook dinner, or being snappy and irritable, or generally just not very present in my Family’s life, he and my Daughter have been taking turns looking after things at home, cooking etc.

So that’s where things are right now.

I know this is not going to be an easy road for any of us and thought if I was able to talk to others familiar with what’s ahead that it might help. 🙂

[kj]

Hi Raevyn

My heart goes out to your Mum ,yourself and family,having palliative care involved will help control your Mums pain,you will have to be guided by the medical team as her disease progresses further, as to the options available,I have a relative with bipolar 2 who is on meds and for the most part they are ok,Gee you are doing an incredible job of being there for your Mum without meds,but you must also try and look after yourself I know it’s easy for me to say but if you become very unwell,you won’t be able to help Mum or yourself,have you had a chat to a medical professional about your  situation.

I have had friends pass from this disease with similar prognosis to your Mum however they were having chemo.And the time frames involved were different.

Take care of yourself also.

Im not a carer of a terminal loved one so I can’t imagine the thoughts and stress you are going through.I hope another carer going through similar can provide more  helpful advice for you.

Its great your husband and daughter are very caring and supportive at this terrible time in your life

kj

[Raevyn]

Hi all, 

@kj Thank you very much for your kind reply. My apologies it’s been so long since I last posted. 

I’m currently worried about Mum’s state of mind. 

A visiting palliative nurse said to her (with the best of intentions I’m sure) that the prognosis of how long she may have left is really only a rough guide, everyone is different and she could still have another couple of years yet. 

While I realise in *theory* this could be correct, Mum has become suddenly cheerful. In fact, *too* cheerful, deciding that she is fine, the Oncologists are wrong, she has plenty of time and we may as well cancel the once-weekly visits from the palliative nurses. It doesn’t help that she hasn’t slept in two days (not due to pain or discomfort, just “can’t sleep”)

While I don’t want to be a pessamist and/or make her feel bad, she is not being realistic and I dont know how to handle it. 

I realise it’s probably just one of the stages of acceptance or whatever, I don’t know whether I should say something to the palliative nurses or just wait and see what happens next. 

Apart from that, she said earlier in the week the pain comes and goes, but when it’s there, it’s getting worse and her current pain relief is only taking the edge off.

Also much more recently, (in the past couple of days or so)  she has been getting pain in the stomach after eating and last week told us seperately (myself and a palliative nurse visiting previously) she was starting to get occasional pain and could feel a lump in her groin area as well. She told me the nurse dismissed it saying the only way to find out what it was, was via a biopsy and there was no point in that as she wasn’t undergoing chemo anyway.

I’ll see how she is tomorrow and over the next few days. I’ve read a lot of info but am still feeling a bit lost and unsure of whether what is happening is normal or not. (If you could call any of this “normal” anyway)

If anyone has experienced anything like this, what did you do and how did you cope with it? Any suggestions/further info/ideas would be much appreciated.

Thank You 🙂

[kj]

Raevyn 

Sometimes the pain medications can cause different mood swings and thoughts,it may also be how your Mum copes with the thought of death.An increase in pain is not good,occasionally the body can’t process the pain meds properly they build up causing confusion ,you are so right what is normal in this situation ,everyone is so different with the body’s and minds response.Also a lack of sleep does not help mind or body,Maybe some meds to help with sleep might help.

[Raevyn]

Hi Kj, all.

It’s been some time since I’ve posted. 
Mum is still with us and has beaten the initial prognosis of  2-4 months she was given.  (Nearly 8 months since diagnosis) 
She has done so well, only occasionally needing strong pain relief. Most of the time she just takes Panadol. 
I’ve noticed in the last 2-3 weeks especially, her mood swings are getting a lot worse, as is her anxiety and irritability. Today was particularly difficult. She was stressed and confused about Her food menu and shopping list. After two hours of slowly and patiently going through everything, it was finally sorted, but not before a couple of near tantrums and angry outbursts, which, more than ever,  is not like her at all.  The palliative Nurse had visited beforehand and Mum seemed fairly calm and communicative although she was contradicting herself at times (for example saying she had a good night, slept well but was very restless and had kicked off most of her blankets) 

I spoke to the nurse as she left and voiced my concern, she agreed there were definite signs of deterioration. 

As we were Finally leaving, Mum pulled me aside and said how she had recently seen glitter in the air and how pretty it was and that she saw it as a blessing.

As her eyesight is bad I don’t know whether it was something to do with it getting worse, or whether she has been hallucinating as it’s not the first time she’s mentioned about either seeing or smelling something unusual. 
Has anyone else had a family member go through this and if so, how long roughly was it until they passed? 
We’re trying to organise a scan to check on what is happening in her body as she hasn’t had one since diagnosis.  We should know by this time next week if/when a scan will be done. I’ll hopefully have some kind of update to share by then. 
Thanks everyone for reading. x

[kj]

Hi Raevyn

Thats great that your Mum has gone past  her initial prognosis,and to read that most of the time Panadol helps her well done,I hope the scan goes well for her,we are all different how the body handles illness,good luck with the scan results.I hope that you are going ok as well

[Raevyn]

Thanks @kj.
Will see how we go today, am finding it difficult as she is good at pretending everything is fine so that others think she is going quite well when that’s not actually the case.
As there’s no cancer in her actual pancreas, just the secondary large tumour in her liver, (biopsy identified the cells as not being from the liver but most likely the pancreas or bile duct) she looks rather jaundiced and when tired face looks pale and drawn as well. I’m encouraging her to rest as much as she needs and not push herself too much.
I’m just trying to take things one day at a time. 🙂