Can anyone help me understand my aunts cancer

[Chipsandonionrings]

My aunt is very dear to me and has been like a mother to me. I now live 60 miles away and can't get to see her very often, sadly. I have 3 dc - 2 under 3, so to keep the risk of infection reduced I can't take them with me to visit, so this further limits my options.

Late last year she was diagnosed with primary peritoneal cancer. She had an operation to remove her peritoneum (sp).
They didn't find a single tumor but they said it was like rice scattered on a plate. I think it was stage 3 when diagnosed. She had bad ascites (sp) they drained off 4 litres.

She then had chemo which reduced the levels of antibodies in her system.

Since then she has found the cancer markers are increasing and her current chemo isn't working. She is about to start another course of chemo - this is the one that will make her hair fall out.

She is a very practical person and on hearing this started knitting hats!

For a long time she has been saying that they will manage to get the cancer into remission but she has form for epic denial and just telling you the bits she wants to.

So my question is realistically what is next for her? The current chemo isn't working, what is the likelihood of this next lot improving her health. She finally admitted that the drs can't cure it. I did some googling and it doesn't look good. She is mid 80s but in excellent health otherwise and very fit and active. I am seeing her tomorrow and I know that she feels unwell and she thinks it's from the cancer not the chemo. In a week she has another ct scan so hopefully we will have more concrete news then.

I am terrified of losing her but need to be realistic. I need to know what the expected outcomes and expectations are.

She won't tell me very much and I want to be able to offer some practical support. Her very aged partner - 94 is doing a lot but he has the start of dementia. She doesn't want to be a bother but I want to make life a little easier for her.

So far I have bought some hats, warm bed socks, made some bland but nutrtious soups and stocked up on some good books.

I am terrified of losing her and don't want to look back and wish I had done more. She is a stubborn old gal mind and will tell me to back off should she feel like it! When my uncle died of cancer she played down how ill be was and then I got to see him one last time before he died and it was so quick as they had kept the full extent of it from us. I still feel terrible for not doing more for them both at that time and don't want a repeat of that experience, but obvs it's not all about me.

Can anyone share any experiences they have of this type of cancer as googling it just makes me even more worried. Tia.

Sadly my aunt has a chest infection and didn't want to bother the Dr-as she didnt want to take oral antibiotics as they upset her tummy, so ended up being taken to hospital last night. She is now on iv antibiotics and has spent xmas day on a ward. I have been into visit her and she is very poorly. We had her partner over for lunch as he would have been on his own otherwise. Its so sad as she looks like a little frail old lady now.

She is also talking about stopping her chemo and is seeing her oncologist in a few days to discuss her options. We are just waiting to see if it is having an effect. Her lungs are very congested and she thinks its the cancer as opposed to the infection. Looks like the end is getting closer.

My aunt had 2 days in hospital before discharging herself against drs orders. She is at home and is very poorly. She is refusing to take the antibiotics as they give her an upset stomach. She hasnt eaten in 7 days and whilst she has anti sickness meds she is sick or retching everytime she moves. Yesterday we got the dr out and she refused antibiotics, a stay in hospital for iv antibiotics, a hospice admission. They did give her an inhaler which is helping manage some of the symptoms. I found out she has cancer in the adrenal glands, pancreas, spleen and lungs. She is struggling with breathing but wont have the oxygen as it makes her feel claustrophobic.

Her partner has a chest infection but is responding to antibiotics, but he is not coping.

A family member has been trying to help but she has lied to him about the treatment she has had and rebuffed all the help offered to her by drs so he is annoyed and upset so has backed off, as nothing he is doing will help as she wont let him.
She also suggested that he might try and slip the antibiotics into her food which upset him no end.

I dont believe she is trying to hasten her death but dont understand why she is doing this. She wont have a nurse in (could easily afford it) and the family are struggling to help. Its very sad does anyone have any advice? I am swinging from being very sad to very cross with her. In her defence she has always been a stubborn old gal but the pressure this is putting on everyone is immense, I feel guilty saying that but its the truth. What can you do when they won't help themselves.

Sorry to hear what's happening, it must be so hard on you all. It's a year now that she has been dealing with this and in her 80's it must be so hard - I find it hard in my forties!

I understand about the antibiotics, I dread being given them as they cause me tummy problems too. Unfortunately a necessary evil but not anything you can do if she is refusing them.
If someone hasn't already then I think someone needs to have harsh words and be blunt with her at least about getting help in to ease the strain on her partner if nothing else. Try and make her see it doesn't matter in the end if it's family or nurse if you have already lost that part of independence, and accepting professional help she might even improve the way she feels. Maybe give Macmillan a call and see if they can offer advice. Palliative care are very good at managing sickness too.
Last year just before Xmas I was in hospital for pneumonia and got very down. Thought "this is it" the slippery slope of infection after infection, and every time I do get ill I have the same thoughts, maybe she is too. Once you are on top of the illness though positive thoughts return.
I hope things get better for you.

Thanks for your reply helh, I think she thinks this is the end. No one has wanted to have strong words with her as she is so ill. But I will when she is feeling a bit better.I hope she will get over this.

They and she have said no more chemo. She cared for an elderly family member and would get frustrated at them doing exactly what she is now and I will point out the similarities, in the situation.
She is being very selfish which I totally understand but its hard on everyone as she wont do what the dr says.

The other member of our family is very hurt and as they are the closest person to her they would be the person she calls on but I fear she has alienated them. She is a very difficult person that has acted terribly at times and how she is acting now is bringing it all back and they are backing off.

She has started eating now she has the nebulizer to help her breathe more easily so hopefully we will see some improvement.

Its just sad seeing such a lion of a woman suffering like this.

Thank you for taking the time to reply, it helps to get all this out.

Happy new year to you.

So a little update. My aunt eventually recovered from her chest infection without antibiotics, so she was convinced she knew more than the drs, that's so her! It took 2 months mind. She has managed to get the drs to re administer chemo. Its one that she had in the past, 3 yrs ago and they hoped her cancer wasn't immune to it. Sadly it looks like it is. Her levels are high and rising, ca125.

She saw a private oncologist who told her the experimental treatment she was hoping would work, wouldn't be suitable. This was a blow but she recovered.

They want to finish off the round of chemo, she is half way through but not tolerating it as well this time.

She is hard to get a straight story out of her, there was talk of other tablets which might help but she wont discuss the next.options.

She is planning on moving house and is actually feeling pretty well. Her eye sight is worse but she still gardens and cleans.

She thinks its the chemo making her feel ill and not the cancer but wont have the quality over quantity debate. The drs are amazed esp as she is late 80s now.

She plans to live until xmas, so I suspect they have warned her the end is close. She did say at one point that she would plateau and feel well for a period before having a sudden decline. She was diagnosed as terminal 9 months ago so.is doing well.

She wont accept any help but seems to be coping fine. She has had some support from the local hospice and thinks differently of them now.

She is still a stubborn old bugger and I love her to bits. Does anyone have any experience of the plateau? I cant believe she is still fighting this esp as we nearly.lost her at xmas and she has bern fighting this for 4 years. I am very proud of her.

I posted on this thread a long while ago and pleased to see your Aunt is still around being stubborn and feisty. It's impressive that she is still doing her own cleaning and gardening.

Again, I sorry but I've no advice. I just wanted to wish you well.

Thanks YOU, I wasnt really expecting a reply, its just nice to get my thoughts out.

I am amazed at the cleaning, I think she does it by touch! I am visiting her in 10 days. Last time I saw her she looked well as no chemo, so I am expecting her to look ill this time. We speak regularly on the phone which is good. I can almost believe she isnt dying but of course she is