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Can anyone help me understand my aunts cancer

(33 Posts)
Chipsandonionrings Tue 13-Dec-16 20:21:45

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.

OP’s posts: |
sotiredbutworthit Tue 13-Dec-16 20:23:58

I don't have any advice I'm afraid. All I can say is that she is lucky to have you in her life. Just be there for her to talk to and do what you can. Big hugs. flowers

ElspethFlashman Tue 13-Dec-16 20:38:11

I would wonder if since the chemo hasn't worked, if she is still stage 3 or if there are now distant metastasises.

What you can give her most is your time. It's difficult with the kids, but if I were you I would see her as often as possible and ring frequently. Keep in the loop. Constipation is frequently a problem, as is pain.

Chipsandonionrings Tue 13-Dec-16 20:57:51

They said when she had her op that as the cancer was like little seeds they wouldn't be able to remove it all but they could knock back the progression. At the last consultation they said it hadn't spread but she is due another app with her oncologist in a week or so.

I am trying to provide telephone support but she is not a touchy feely person and if I ring more than once a week she gets stroppy with me! I will visit again at Xmas.

Its all very tricky but I don't want to look back and regret not finding the time.

OP’s posts: |
madgingermunchkin Tue 13-Dec-16 21:13:19

First of all; stop beating yourself up. No matter how much you do, you will never feel like you "did enough".

It would appear that the tumours have either grown, or at the very least, not shrunk. If the doctors have admitted that they cannot cure her, then the new chemo is aimed at slowing it and prolonging her life.

P1nkP0ppy Tue 13-Dec-16 21:17:04

You're doing as much as she will allow Chips and that's really as much as you can do, it's hard when she's a stubborn bugger isn't it!
I'm sure she appreciates everything you do by keeping in touch.
Dh's godmother was like this but we had to respect how she wanted to manage her life while she was able to.

Chipsandonionrings Tue 13-Dec-16 21:36:36

I will take my lead from her, she has been in deep denial and if willpower alone could cure cancer them she would be better by now! She is a remarkable woman.

Does anyone have any experience of how this is going to progress. If this next bout of chemo doesnt to the trick, what are her options?

She has had constipation issues and terrible nausea after her chemo sessions but anti sickness tablets are helping a bit.

OP’s posts: |
madgingermunchkin Tue 13-Dec-16 21:46:18

It's palliative care. You could always phone Mcmillian nurses (took care of my aunt many years ago) to ask for some advice and a general idea of what will happen. They're very good.

Chipsandonionrings Sat 17-Dec-16 07:12:11

I saw my aunt the other day and it's worse than I thought. She has a cataract in one eye making her vision poor and the other eye has been damaged my high pressure in the blood vessels in the eye so is pretty much useless. She is terrified of going blind.

Her cancer isn't responding to the chemo and they are talking about this other type but it's the very strong chemo and they have warned her she might not be able to tolerate the course as the side affects are so bad.

She is pining her hope on a immunotherapy drug that the nhs can't prescribe at £15000 a course. Money isn't an issue and she is happy to pay, she thinks it will cure her but my limited googling isn't backing this up.

She has lost so much weight and is in constant pain, she doesn't like to take the medication as it causes constipation. She won't engage Macmillan or anyone similar as she feels like that is admitting the end is close. Her partner is struggling but she won't accept family help or carers.

Its so sad to see her this poorly and I genuinly feel the end is close. She can't or won't accept this as is her right but I feel so terrible for her.

Does anyone have any experience of immunotherapy drugs?

OP’s posts: |
Chipsandonionrings Sat 17-Dec-16 07:15:48

She had her ct scan this week and next week She sees her cancer specialist who will tell her what the next steps are. Its just so unfair she feels robbed as all the women in her family have lived well into their late 90s and she thought she had another 10 years left. She has had very good health all her life and then this. She is such a strong and remarkable woman (and difficult) if willpower alone could cure it she would be well!

OP’s posts: |
sandgrown Sat 17-Dec-16 07:24:23

Is she well enough to have the cataract treated to help her sight ? I think you sound like you are doing all you can to support her . Perhaps for her accepting outside help is like giving up but you could maybe speak to Macmillan for advice ? She is lucky to have you watching out for her

Chipsandonionrings Sat 17-Dec-16 07:35:25

They haven't said they will do the cataract just that it's an option. Her partner doesn't want her to have it due to the risk of losing the vision and her other eye being useless but she is determined and will do exactly as she pleases. She will find out soon if they can and will.

I think I will ring Macmillan and get some advice. I need to know what sort of timeline I am looking at, I can and will rearrange things to help look after her even if it's just stocking the freezer with meals and doing a bit of cleaning. She is still doing her housework but can no longer get upstairs as she struggles to breath.

She doesn't really want to bother people but it's my privilege to help her as she was the one person I could always count on growing up. Its just so sad up until last week I just thought she was poorly but had years left now I know that's not true

OP’s posts: |
madgingermunchkin Sat 17-Dec-16 09:42:09

TBH, I'm not sure they will be keen to do the cataract as there's a chance she won't come back from the anesthetic.

ElspethFlashman Sat 17-Dec-16 09:48:46

She needs to take her meds. I presume it's morphine she's refusing as it does cause constipation. You just have to take some really decent constipation meds, such as dulcolax or similar. But she would first need advice on what is best for her as she doesn't want to swing the other way I.e. diarrhoea.

The Macmillan nurses would be really good to ask. Also they would be able to discuss with her having a syringe driver which is automatic meds 24/7 and you can put a cocktail of Meds in at one time so it's very handy. They come to the house every day to refill it.

Please encourage her that those nurses are not just for terminal patients but for practical advice for everyone with cancer.

Chipsandonionrings Fri 01-Dec-17 09:42:56

A little update on my aunt. She had the harsher chemo and it knocked the cancer back very successfully. So much so she had a summer off of treatment. Sadly it caused high blood pressure and caused her to go legally blind but she has not lost her sight completely. This has devastated her as its taken away reading, her great pleasure.

She is still as stubborn and difficult as ever. Another side effect is spinal stenosis, so it prevents her walking far and causes sciatica type pain. She is still fighting but has now been told its months. Predictably she is still refusing all help.

I am just gutted as this will be her last christmas. It has now spread to her lungs and spleen. She is looking great as she isnt having chemo and is looking healthier than ever. She wont discuss it just says how well she feels and she cant believe she is actually ill. Does anyone have any experience of what might happen? She wont engage with mac millian, as she thinks thats for the dying.

OP’s posts: |
Reallycantbebothered Fri 01-Dec-17 11:15:01

It's a shame she won't engage with Macmillan as they can provide a lot of support( practically and emotionally for her and partner) that she is palliative she should have had some contact with the palliative care team either from GP or hospital to discuss how to provide symptom relief as and when required ( do any nurses visit her at all?) would she be prepared to go to a day hospice? We have one attached to our hospital which provides reflexology/ aromatherapy and art therapy or just a place to have coffee and chat
Quite often when someone with advanced cancer stops chemotherapy they do actually feel better as not having the toxic treatment and their blood counts recover ( she may have been quite anaemia before), however inevitably the disease will return at some point and it would be advisable for her to have talked to someone about where she wants to be treated ( ie at home, hospice, hospital) to ensure the services are in place
I'm sorry this will be her last Christmas and hope you can make some lovely memories [ flowers]

Surpriseeggsforbreakfast Fri 01-Dec-17 11:18:07

I'm sorry your aunt has lost her sight. Would she enjoy audiobooks? An audible subscription might be a nice gift for her if so 💐

Chipsandonionrings Fri 01-Dec-17 15:12:39

She is not interested in audio books as she can get them from the library. She struggles with tech and thinks it will be too complicated. I took her and her partner out for lunch today and she is prone to tears which is very unlike her.
She has somehow persuaded the drs to give her more chemo for the metesties sp but they have said it probably won't work. She is a hard person to say no too! She thinks she has until the summer. She thinks the hospice is for the last week of life and won't attend. She is not bothered by xmas at the best of times and has told me she will be recovering from chemo so doesnt want to see me. She has a dose on the 22nd. I am just so scared of whats to come. She nursed her first and second husband thru end stage cancer at home, so she knows what she faces. I think she is afraid but wont admit it. Her partner has been diagnosed with senile dementia and I worry what will come of him as his family are all overseas. Its just shit. Thanks for all your support

OP’s posts: |
Gruach Fri 01-Dec-17 15:24:24

I have neither knowledge nor advice - but I sincerely hope that when I need it there will be someone around to love me as much as you clearly love your aunt. I'm sure it makes a difference to her.

MeltingSnowflake Sat 02-Dec-17 23:03:54

I'm sorry to hear this latest news, but so glad the stronger chemo helped her and gave her some extra time.

It must be incredibly painful and frustrating for you to have your (and everyone's) offers of help rebuffed. It helps me sometimes to remember that my mother (who has stage iv cancer) is an adult human being just like me, with her own thoughts, opinions and ways of doing things and making decisions.

I'm not sure I'm explaining that very well - I suppose what I'm saying that, although we wish it was in our hands, it isn't, and just because we wish she would do things differently doesn't mean that she's doing it the wrong way, it's just the way that - for whatever reason - is easiest for her. I don't know. Nothing really makes it better, does it?

Just knowing you're there for her and care so much about her will be a huge support to her flowers

Chipsandonionrings Sun 03-Dec-17 10:09:36

You are absolutely right she lived her life on her own terms and I expect nothing else from her relating to her death. I just want to pick her up and cuddle her and make her feel it will be ok like she did for me as a child.
Cancer is a fucker

OP’s posts: |
YouThought Sun 03-Dec-17 10:57:22

What a sad thread. You Auntie sounds like a strong woman and you sound absolutely lovely.

I'm sorry that I've no wise words.

MeltingSnowflakes post is spot on.

Chipsandonionrings Wed 06-Dec-17 19:36:38

I think reality is setting in now, I have emailed her partner offering support and they are going accept it. They or atleast my aunt was determined to do this on their own. She has had more chemo and is feeling ill. I am going to try and convince her to get some bought in assistance, either cleaner/gardener.
She is still working on a project she will probably never see completed but I can at a distance support that.

They are concerned about my time commitments but my Dh is very supportive and work is only pt, so I can fit it all in.

I am pleased they are letting me in and hope I can make things easier. I am worried about what is to come, cancer is an evil disease and I hope we can ensure the end is well managed, dignified and pain free. Does anyone have any advice on how to achieve this?

OP’s posts: |
Reallycantbebothered Wed 06-Dec-17 20:32:31

I'm sorry your aunt is feeling ill from the chemo,but glad she is more accepting of assistance
I would try to get her round to thinking of letting the hospice at home or Macmillan staff come to talk to her , they can offer so much help- and not just end of life care but symptom relief and practical advice so that she can stay at home and be in control...
In first instance I'd get her to see her GP to see what support is available in your area, or ask where she's having the chemo...she should have a specialist nurse overseeing her care or a consultant she can discuss this with , she could also be entitled to some financial help as well
You sound like such a wonderful niece and hope you can get her the help she will need

helhathnofury Thu 07-Dec-17 07:40:53

I would really push for her to let palliative care be involved. I understand her reluctance...I am 42 with stage 4 cancer and hearing about their involvement made me think well this is it then. But it wasn't and they will take a back seat and just step in as needed. They have solved issues with constipation and vomiting, and I feel better now knowing when the time comes they will make it as pain free as possible.
Your Aunt sounds like an amazing woman, and she is lucky to have you too. Wish you all the best.

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