Mum with pancreatic cancer, I'm feeling a bit bewildered and lost.

[FranklyMeDeer]

I've posted on a couple of other threads in this topic but I think the time has come to post my own.

Last week my mum was diagnosed with pancreatic cancer following a CT scan for abdo pain. She's been told it's inoperable and that she has metastases in her liver and lungs. She's since had a biopsy and we're awaiting the results.

I live on the other side of the country and haven't seen her for a couple of months. Went to see her this weekend and it's floored me. She's jaundiced, lost loads of weight and spends an awful lot of time in bed due to nausea and pain. She's really been downplaying how ill this is making her feel.

Obviously now I'm aware I'm pushing her to accept the help that's out there. My siblings and mum's siblings are also on the case, she has plenty of people who will stick up for her if she can't or won't do it herself.

This kind of situation isn't something I've had the misfortune to deal with before now and I have loads of questions, I hope I can just blurt it all out here so that I can deal with RL better.

Once we have the biopsy result, what happens then? Given what we already know, especially that pancreatic cancer has poor outcomes, I'm mentally fortified to hear that we're dealing with making her remaining time as comfortable as possible. How does that work, would she be referred to a palliative care team? How do we access support services? How the fuck do we help her when she's refusing to admit she needs help yet she spends so bloody long every day either in bed or leaning over a bucket?

I've been very frank about all this with my aunt who is an absolute warrior and has now designated herself my mum's spokesperson on all things cancerous. She will accompany her to appointments and make sure that docs know precisely what's going on, not what mum decides to tell them.

I want to be there but I also don't..my relationship with mum is a bit strained, she's not a particularly loving or supportive person and she has been very disappointed with me over the years whenever I havent behaved in certain ways which has completely eroded my self esteem. She's seen as a good person from the outside, religious to a fault, I think a lot of people would be shocked to know how she's left her own children to sink or swim whilst going off to do good deeds in the community. I'm a tad bitter tbh but there's nothing that can be done about it now and I want her remaining time to be comfortable and as happy as possible.... My aunts are moving heaven and earth to get her the very best care and I feel horribly guilty that I can't (won't) do the same. I have ,my dh and dc's and they need me here. I'm maybe only going to be able to get to mum a couple of times a month for a few days until, well, the end comes I suppose. I work in a school, so it's difficult to take leave as and when, and I don't want to use up all their good will with emergency leave until I'm really going to need it later on.

This is rambling and confused which is about right for how my head is right now. Any words of wisdom would be so helpful.

Hi Frankly,
Your mother should be referred to palliative care team by her consultant in hospital- this will either be the hospital palliative care team who can deal with her symptoms when she is in patient and then refer her on to the community palliative care team, (if she wishes to be cared for at home)
Your mother will also have a clinical nurse specialist who will have been coordinating her care since her diagnosis- have you been able to speak to them regarding what happens next- your mum should have had a cat scan and may need a stent inserted if she is becoming jaundiced ( but this is not always the case) she may be referred to an oncologist to discuss treatment but again this will depend on biopsy result
I know how difficult it is when you live so far away, but realistically there is only so much you can do, so you mustn't be hard on yourself.
The Macmillan website may be a useful resource,
I'm lucky that the hospital I work at has a Macmillan 'pod' where relatives can get useful info re benefits / treatment etc as it can be so confusing and frightening regarding what happens next
I hope you get some answers soon and in meantime if there's anything else you're not sure of , I can try and advise xx

Thank you so much for replying, I had just come on to bump the thread as I'm not sure how to manage waiting for the biopsy results so can I pick your brains a little more?

My sister thinks my mum has stopped taking her usual medication for preexisting conditions, most notably her heart. Dsis lives with mum currently and is anxious that she'll drop down dead one day because of not taking her heart meds. I don't think it's likely but then I'm not there seeing her fade day in day out.

I've offered to arrange a home visit from her gp but she's said she doesn't think it's necessary. We don't yet have a date for the outcome of the multidisciplinary team, biopsy results etc. Biopsy was last Thursday. Mum just wants to wait until she's seen again at the hospital. I'm assuming that any referral to Macmillan or palliative care will be made after this appointment? Do we need to wait until then or should we be pushing things through? As a family we're going round and round in circles with no idea what to do for the best.

Thank you again.

She's had a cat scan, she was told that the cancer is inoperable and has already spread to liver and lungs, that was when the biopsy was arranged. So we already know the prognosis is poor.

Hello,

I just wanted to reply to your post to say how absolutely sorry I am that you are going through this. My mother was diagnosed earlier this year after the same symptoms you describe. She was also told she was inoperable (after a couple of months of you are, oh no you aren't) to the point that the operation was cancelled just a few days before.

I can't offer too much in terms of help but I can offer support as I know how you are feeling. Our local hospice has been a great support and I hope they will continue to be.

Sending lots of love to you and your family x

Thank you. Can't sleep tonight. I just feel so helpless and sad.

Hi Frankly

I'm really sorry to hear about your DM. My DF has just died from this disease so I understand how frightening it can be.

On practical matters my DF's palliative care was arranged via his GP. Some GPS are more proactive than others, so it may be you end up having to push things a little. We saw the GP after my DFs biopsy. The GP then put us in touch with the Macmillan nurse.

I must say that it wasn't really until quite near the end that we got very regular visits. The Macmillan nurse called occasionally, but it was only after DF was discharged from hospital, following complications that palliative care really seemed to kick in for his final 3 weeks. At that point my mum had a one hour daily visit from a district nurse. My DM was looking after my DF at home ( where he died). I have to admit I was slightly surprised that there wasn't more help earlier, or even at the end. I live far away though so don't know if this was because my DM was reticent to ask - it may very well have been ( for example no-one told her what she should do when DF died until a friend of mine who was a GP thought to ask her). She did get some specialist equipment at final stages to help DF.

If your DM chooses a hospice then I think things are obviously a little easier in some ways.

I hope that doesn't sound too matter of fact. Again I'm so sorry you are dealing with this, it is a shocking illness and everything seems to happen so quickly. It is very hard on both the individual and those caring. I hope you can find a little space for yourself. If it is of comfort my DF's last days were very peaceful and well managed, so he had little pain at the end.

Wishing you strength for the time ahead.