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**Urgent** Any cancer experts/people with experience around to answer a query?

(53 Posts)
PussinJimmyChoos Sat 04-Oct-08 21:59:27

As you have probably seen from other threads of mine, MIL has terminal cancer - started in the liver and has now spread to bile ducts and pancreas. She is nearly 80 and also non insulin dependent diabetic

The diagnosis was two weeks ago tomorrow and the doctors said 6 weeks max. DH's family did their nut and told DH to get over there asap (DH is foreign)

DH text tonight with a story about a woman that they had heard of who lived for 10years with this type of cancer. I'm so sad as I don't think this will be the case and really don't want DH to be building up for nothing with false hope, only have a bitter shock if something sudden and nasty happens...

Surely 10 years is not feasible with this kind of aggressive cancer? I asked if it was possible if the doctors had got it wrong, but DH, who is a Biomedical Scientist anyway has seen all the reports and says no.

Apparently the family are going mad with the uncertainty of it. Atm MIL is not eating except for fruit and protein shakes. She is walking around, not in pain (although one of her pain killers does have opium in it so it could be that rather than the disease not spreading iyswim)

Any help appreciated...am so worried about DH

emma1977 Sat 04-Oct-08 22:08:33

Doesn't sound great TBH.

Prognoses are always a possible range of life expectancies, so it is possible that someone lived for 10 years. However, I doubt the majority get anywhere near this.

Not all cancers are painful, and pain isn't always a good indicator of severity. It is good thing for her that she is comfortable, mobile and eating for now.

I can't make any comment on a specific prognosis, but what she has been told already may well be realistic.

cathcat Sat 04-Oct-08 22:12:53

I think you have to put some amount of faith in what the doctors have told you and agree it is terrible to build up false hope.
My dad was given 6-9 months and only had 2, so it can go both ways. sad Sorry for the hard time you are having, I know what it is like.

policywonk Sat 04-Oct-08 22:15:47

There are always a few (true) stories of people who have survived for years after a terminal diagnosis, or people who have become cancer-free. It does happen, but it's incredibly unlikely. It might be a comfort to your husband to think that there is some hope; I doubt that it does him any harm to be aware of these occasional occurrences, so long as he's not expecting the same outcome for his mother.

whomovedmychocolate Sat 04-Oct-08 22:17:45

Puss

You are having a horrible time I know. But honestly this is a resolvable situation and only one way. She will not live beyond six weeks - here's why:

(1) Her liver isn't going to be functioning well and will build up toxic crap in her body which will start to stress her internal organs
(2) If she's otherwise in good nick, her internal organs will start to expire within 2-4 weeks
(3) Most folks get slightly better before dying. Often from a heart attack or stroke. Sometimes they just go into a coma unexpectedly and people just let them die because they will in 12 hours anyway.
(4) People always come up with 'recovered from head being cut off' stories, they think it's helpful. Doesn't change reality. Your DH may well be in denial. Humour him, he's got a lot of grief ahead.

Chin up chuck, you won't be marooned and alone for long I'm sure.

PussinJimmyChoos Sat 04-Oct-08 22:22:14

WWMC - spooky, had just e-mailed you about this! Its not about being marooned and alone, although that is pretty shit I will agree, its more about DH...am so worried for him....he's already stressed to the max. If he has to fly back and then back out again...well, he needs to do whatever it takes but....sad

coochybottom Sat 04-Oct-08 22:23:36

My Mum died from secondary cancer in her liver that had spread from the breast for which she had had treatment 4 years before. Whomoved what you have just said in such a blunt way has sickened me to the pit of my stomach. By all means tell people how it is but not like that!angry

whomovedmychocolate Sat 04-Oct-08 22:24:30

Coochybottom - sorry. Puss and I are friends. Sorry about your mum - really.

PussinJimmyChoos Sat 04-Oct-08 22:26:08

Coochy -please don't be upset by what WMMC says. She knows I appreciate straight talk and no fluff. I'm also sorry if my thread has upset you in anyway

whomovedmychocolate Sat 04-Oct-08 22:28:08

Also Coochy, I have direct experience of people round me dying of cancer and nursing them so I'm perhaps a bit more straightforward than I should be. Both Puss and I have been a bit defluffed round the edges lately!

PussinJimmyChoos Sat 04-Oct-08 22:31:47

Yes, we are so de-fluffed we are practically bald...

Poor DH...think will gently break this to him tomorrow that miracles do happen but to not get his hopes up too much. Mind you, given his job, he knows all this but I guess there is always a part of you that wants to hope...sad

Bloody hate being so far from him at this stage! I can tell the whole family are just very confused atm as they keep expecting her to go downhill, are afraid to hope when she doesn't....very sad..

whomovedmychocolate Sat 04-Oct-08 22:37:36

She may well be putting her house in order so to speak. Sometimes people don't die until they've done what they need to.

Perhaps you don't need to break this to him at all, whatever you say, he's always going to hope and that's right and proper that he should do so. Your job is to listen and remind him that you guys are there and will be there whatever.

emma1977 Sat 04-Oct-08 22:48:22

What your dh is currently doing is starting to go through the stages of grieving, which are important in helping him to prepare mentally to let go of his mum.

He is currently experiencing denial ('the diagnosis/prognosis can't be right') with a bit of bargaining ('if I believe in x,z and z, then she might get better/live longer). This is normal. He will probably reach a stage of acceptance soon.

As WMMC says, be the sympathetic ear and let him get his feelings off his chest. He probably knows the reality of it deep down.

FanjolinaJolly Sat 04-Oct-08 22:49:20

Hello haven't read all replies but just wanted to say sorry about your MIL.

I am no "Expert" but have experience of caring for end stage cancer patients and those undergoing aggressive canccer treatments.

I think that your dh and his family are going through a perfectly understandable grieving process plus the awful "in limbo" waiting period.Although there are occasionally exceptions to the rule (I've seen some occasional pretty amazing "defying the medics/nurses expectations" cases) the Medics would not normally give such a poor prognosis unless they were fairly sure of the advanced stage of disease.Sadly nobody can give an exact time but ususally a ball park expectation.

Sometimes people "plateau out" and seem remarkably well before getting quite poorly.Sort of the calm before the storm.The important thing is that your MIL has her symptoms well controlled.It is fairly normal to "clutch at straws" and hold on to hope,which I think is what your dh is doing.

I think all you can do is be around to listen to him,really,which I am sure you are doing

I am sorry you are in this position and hope your MIL is as painfree as possible and gets to spend some valuable time whilst she is well enough with her family.xx

PussinJimmyChoos Sat 04-Oct-08 22:55:35

I think DH being there has been a huge boost for her. Apparently, she was a lot worse before he came so perhaps its an artificially induced 'high' before the ...... sad I made her a video of DS in the garden with the bubble machine which she loved and it made her so happy so I guess that is all helping isnt it?

DH said they are going mad over there as one minute she seems poorly with BP dropping drastically, then the next minute she is fine.

His visa (due to National Service issues) is only for one month...his brother intially wanted him to save it and only come out when the end was near as he didn't want him to have the agnony of saying goodbye when the visa ran out knowing it was really goodbye, the sister was more of the opposite opinion and then they were both come out asap. I think part of DH is wanting to be there for the end and so is kind of shocked at nothing happening atm....its so weird how it can make people feel isn't it?

whomovedmychocolate Sat 04-Oct-08 23:02:31

Have fb'd you Puss. Off to bed now with hefty!

chegirl Sat 04-Oct-08 23:05:20

HI,

I am really sorry about your MILs diagnosis.

I can only add from my experience.

My DD had leukemia when she was 12 and was diagnosed terminal about 18mths later. We didnt know how long she had but we knew it wasnt long. Drs couldnt tell us and we didnt press them for an exact time because there seemed little point.

What really really didnt help was people telling us that the drs could be wrong, that miracles DO happen, we should stay strong etc etc. Our girl was going to die and people telling us to be strong was not going to change anything and just sort of made us feel guilty.

We did do things to help her, she took oral chemo, she ate whatever she wanted (after hardly eating for two years!), she had whatever pain control she wanted (including gas and air which we were told wouldnt help but she liked it!).

We made her last 6 weeks the best we possibly could, full of love and laughs and as little pain as possible. Ironically she had been in terrible pain for ages but the palliative team managed to keep her almost pain free for her last weeks.

As Fanjol says, she did rally a bit and did some amazing things in her last weeks.

What am I trying to say? I dont know really. Its just that once we had 'switched' from the fight to cure her to the realisation that she wasnt going to get better, we tried to make everything as perfect as it could be. I can honestly say that the day she died was not the worst of our lives. She was at home and in our arms and not in pain and she knew she was loved.

I am sorry to ramble. I am trying to help in a mixed up way.

Best wishes to you and your family.

PussinJimmyChoos Sat 04-Oct-08 23:11:00

Che - I'm so so sorry to hear of your loss. Thank you so much for posting on here and sharing your story - I am really touched

whomovedmychocolate Sat 04-Oct-08 23:11:59

Chegirl - I'm sorry for your loss but you sound like you handled it wonderfully - I don't know if I would be able to be so rational in such a situation.

chegirl Sat 04-Oct-08 23:18:35

Thanks for your messages.

I didnt post to distract from OPs question. Just hard to put into a few words what I felt to say.

Its not really about being rational. Your brain just sort of kicks in. I think it must be a survival thing. I know we are not unusual in how we handled it. We all want to do whats best for our kids.

Back to the original post though. The sort of 'i heard of a woman how lived for 10 years' comment is really common. It must just spring from people wanting to offer hope. I dont know. I just feel that in order to make death as 'good' as it possibly can be we have to make that leap at some point. Dare I say without wanting to offend - particularly with elderly people. We need to say our goodbyes and sort stuff out. BUT this is MY opinion and God knows I know its hard to do.

I wish your MIL no pain and may her last days be full of love and peace.

PussinJimmyChoos Sun 05-Oct-08 10:48:14

Thanks for all your posts. Had a text from DH this am. She had pain meds a 2.30am and then again at 6am...from what I can see, the time between meds is decreasing so I'm having a horrible feeling that this week will be the key week as it were.....

DH said she was still well enough to watch him peg the washing out to make sure he was doing it right though - bless!

Sycamoretree Sun 05-Oct-08 11:07:50

This is so hard - my Dad went through all this and passed away in February. The truth is, an awful lot has to do with the biology of the individual, rather than the brilliance of the doctors (though of course, you want to hope that someone specialised in this type of cancer is treating you MIL). Some bodies respond well to chemo or radiotherapy, others not so. Some respond fantastically, but then the cancer comes back faster than lightening the minute the treatment stops.

I hate to say it, but I think your instincts to protect your DH from false hope are probably right, but on the other hand, I know from experience that this clutching at straws, and waiting for a miracle are sometimes all you have to hang on to, to help your through those incredibly difficult final months/weeks.

My heart goes out to your family.

Blandmum Sun 05-Oct-08 11:13:06

Puss, I'm so sorry that you and your family have to go through all of this.

I hated it when people sent me 'misacle cure' stories. These were kind, wonderful people , who were doing this for the best of reasons, they thought that it would help, but it didn't.

Dh did very well, they gave him 3-6 months and he lived 18, and really lived for 17 of those 18. He was astonishing. But it killed him in the end. and it was down to lucj that he did as well as he did.

the only real advice that I can give you is to do what he did. Plan for the worst (ie accept that it is terminal) and hope for the best...hope to do as well as you can in the time you have.

Sending you hugs and every best wish.

PavlovtheDog Sun 05-Oct-08 11:16:05

Jimmy - I don't have anything constructive to say that might help you hun, just wanted to let you know I am thinking of you.

Chin up. See ya tuesday smile.

PussinJimmyWhoooos Sun 05-Oct-08 21:20:28

DH just text...her pain seems to be in her tummy. She is very very tired - he said he's never seen her so tired. His sis was bathing her today and she couldn't even wash her own hair and this is a woman who hates anyone doing things like that for her.

My tummy went clunk when I read about the hair thing...I don't think she will last the week...sad

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