denial

[lahug]

i am unsure what to do for the best. my loved one has stage 4 pc with liver mets. she is being offered chemo and sees the oncologist next week to get things moving. she was unable to have the whipple due to the liver and also lymph node spread which left her and us devastated.i thought it was important for her to have acceptance about what is now ahead.although she has been on an emotional rollercoaster all week since the bypass surgery - instead of whipple - she seems to have gone back to a positive frame of mind and is talking about when she is "better"

have any of you experienced this with your loved one, and should i just go along with her, or should she be made aware of her fate? my heart aches for her, and i know fear may be putting her in to denial. will things dawn on her as her illness progresses anyway and we should all go along with things for the time being? i would welcome your views on how to handle this very delicate matter.

[chinup]

Very sorry to hear about your loved one, lahug.

I have replied because your post struck a very deep chord with me. I lost my mother to pancreatic cancer about 18 months ago. From the day of diagnosis until the day she died she was in complete denial about her condition. She never asked any questions (and was careful not to ask anything which may upset her) and she only ever talked about when she was better and how outrageous it was that she had developed the disease in the first place. My dad who cared for her with total love and devotion also found it very difficult to accept the inevitability of it all and took it upon himself to protect her from the truth, even having words with the specialists who got a bit too close to the mark. The outcome of it all is that I never really got the chance to talk to her about important things and we all had to just stand by and watch her dying, we couldn't even reassure her that we would be ok and that we would look after dad. She did get extremely agitated in the end and had to be very heavily sedated. Whether she realised what was happening and this caused her to panic or whether this would have happened anyway, I don't know, but it was a very painful time indeed.

On the other hand my first husband, who died in his 40's about 10 years ago, in time came to accept his cancer was terminal. He tried to be positive at first and I think this helped him a lot with his treatment but in the end it did, as you say, gradually dawn on him what was happening. He was fairly peaceful in the end - he was still making plans and hadn't 'given up' or anything but he still felt he had something to say and give, if that means any sense. The fact that we talked about my future and that of the children was a great comfort to me after he'd gone.

I suspect your loved one has a fairly good idea about what is going to happen but is prepared to face the future with a positive attitude for now. It is a hell of a lot to take in and she is dealing with it in her own way as best she can. My advice would be to be very patient with her and wait for her to bring up the subject of her concerns and fears. I know it is terribly hard but she will be taking it in on some level.

My thoughts are with you.

[smilodon]

Iahug,

I can speak from personal experience, as I was due to have a whipple, only to be woken up by the surgeon and told that they found two spots on the liver.................

Any way, that was in March this year. I was made aware of the prognosis and have dealt with it to varying degrees of success. At first when I came out, I was just happy not to have jaundice any more, and watch the the progress of my surgical incision healing, getting about more and more and getting lots of visits off family and friends. But underlying that was deepening anxiety. It took two months to get out of it. I suppose what I am trying to get at in a very bad way is that there is a fine line, in my mind at least, between accepting what is going on and giving up. The two are very different, and people think you are in denial if you aren't moping about and crying 24/7. But I equate that with giving up. I still haven't 'come to terms' with it according to the medical profession, but again I equate that with giving up. I know two people who were written off ten and five years ago. They are still here for some reason.

It is still early days for you both ,and you have my sympathy and love. take each day as it comes, learn to laugh again and keep the flame of hope burning.

Martin

[lynbo]

Hi

I lost my husband to pancreatic cancer 2 and half weeks ago.

He was 39, and was only diagnosed on 30th June, he was fit and healthy with a pain in his side!

So, when we were told the news, we were floored, especially as the doctors told us 3 TIMES not to worry about cancer.

I think that you go with the flow, realistically, who can make their loved one realise the truth of the whole matter? how can it ever sink in? your emotions are all over, and change from minute to minute.

My husband first asked 'how long have I got' then he was saying ' give me the chemo' he wanted to fight it, and I know that a positive attitude is the only way forward, if you dont have hope, what have you got?

It will consume you and take over every part of your life if you dont have hope, so I think you are doing brilliant, you are being a support, and you are keeping her positive and that is what gives you strength.

I am not sure if my husband knew towards the end? but, if he did, he never showed it, we loved like we had never loved, holding hands and being in each others arms knowing we were in it together. He was an amazing tower of strength, and I am so proud of him.

Your partner sounds very much the same, and I have a great admiration for her

xxx

[Juliana]

Hi Lahug,

My sympathies on your circumstance, all cancer is frightening, but Pancreatic seems more than that....

I totally understand how your wife feels. I am 38 - have 3 very young kiddies, a fabulous husband, house and life. I had the whipple 2.5yrs ago, chemo and radiotherapy but the cancer returned - spread to both my lungs, arteries and possibly liver. For nearly two years after the op, my health improve I literally returned back to normal, especially the first year. In fact, I almost felt like a fraud or like the drs had made a mistake. Even when the cancer had spread to my lungs I 'felt' normal, healthy - and so it was easy to forget or put on the back burner the diagnosis. I admit, there was a strong eliment of denial - but it was what allowed me to get out of bed, see to the kids, be a wife, mother and daughter - function.

This is what your beloved is doing. Her brain is helping her by releasing it's strongest drug to help her 'live' through this ordeal.....some people call it denial, others call it hope.

Only the past 6-8months has my body started to fail me, I have cachexia, which in turn causes terrible fatigue and depression. Through this journey of mine, this year has felt the hardest, my brain can't mask the condition my body is in and so for the first time I actually feel like I have cancer. It's very hard and the depression is crippling.

I am back on chemo, just 1 cycle of capecitabine so far, but the diarrhea has been relentless and my blood results poor, so not sure if they will continue or not.

All I can advise is, support her on whichever path she chooses, if she is in denial - enjoy it and fill that time with pleasureable things, whilst she is still capable - like weekends away, spontanious gifts or meals, or visits to old friends/family you may not have seen in a while. If you have free time yourself then maybe embark on a course together, take up golfing or learn pottery - be creative.

If she is tired, indulge her, favourite treats, favourite films, books - a hot water bottle and a snuggly blanket can do wonders.

If she is depressed, dont push her to be positive and snap out of it, sympathise - let her talk and actively listen. Comfort her, let her cry and give her lots of cuddles. Wrap her up and take her for a drive, somewhere where there is a spectacular view where you can both sit and listen to some favourite music, make a picnic - make sure she feels she hasn't got to exert herself, as sometimes even getting dressed feels like a mountain too high.

If there is anything unresolved in your relationship, try to deal with it as kindly as possible, apologise for....(these are just some random examples, they may even not have any similarities to your relationship, I just find in chatting to most couples there is always 'something' little or large that can surface or still hurt even if it happened 10/20/40yrs ago!)...forgetting a birthday/anniversary, not sticking up for her against a Mum-in-law, putting footie before her, not helping change nappies or do the night feed, not doing the hoovering, not putting the toilet seat down....lol...the list could be endless

It's not easy, and you will be tired, you will get cross and irritable and wonder who will support you through all this. Well, this is where you will find out which friends are rocks, solid, and even under extreme pressure prove themselves to be diamonds....and which turn out to be spectators, or sadly disappear altogether. Don't be too hard on the latter ones, some people just can't deal with it - it's too painful and frightening, they feel they can't offer you anything so back away and remove themselves from the situation.

Learn to accept offers of help, try not to do this all by yourself, you will get knackered and won't be able to function properly for your partner.

Come speak to us, someone will always answer your posts and we will know through genuine experience what you are going through.

Don't be afraid of getting the palliative care team involved, they have totally changed my quality of life - my pain and discomfort was unbearable and without their help I wouldn't be able to get out of bed in the morning.

I hope there is something in the above that helps you, I can go off on one and my posts turn into novellas - so I apologise for the length!

All the best to you both,

Juliana

[lahug]

to all who offered me invaluable advice and information...wow.. what a wonderful bunch of people. i will take on board each and every comment, and feel strength already.thank you so much.

i should clear up something though. the loved one i refer to is neither my partner or husband. she is my aunt, when she was 16 yrs old she beat ovarian cancer but she could not have children due to ovaries being removed, i came along a couple of years later- ( i am her sisters daughter) and the bond we have had ever since is rare and special. she is my friend, aunt .sister ,mother, confidante, all rolled in to one. i didnt say she was my aunt in my message because since telling people my aunt has cancer a few have thought well its just her aunty. sorry if i misled..it was not my intention.

my aunt was very weepy yesterday and today, and she also watched a tv documentary which spoke about the survival stats of pc, and i think that scared her. i think deep deep deep in her heart she knows it is not good but wants to be "the one" who will be cured. she has never googled pc and i think this was the best piece of advice her gp could have given her, as he told her not to. so i will go with whatever she wants, when she talks about going back to work etc i will go right along with it. whatever is best for her is good enough for me.

could anyone advise me on dos and donts for her diet, and also advise about how well chemo is tolerated by a patient at her stage.

very many thanks x

[smilodon]

I had no specific dietary advice other than eating smaller portions more often. This is really important after a double bypass on the gut because as soon as you overload your stomach, it all decides to slow down and you get bloated. Plus drinking plenty of water is vital. Eating more fruit and vegetables and less meat also helps. Before my chemo I was really nervous, as it was yet another hurdle to get over, and I wondered how I would cope. Then I met a 16 year old girl who had just been through 6 months of it ( different cancer). This put me to shame and I decided if she could do it so could I. I am being given gemcitabine (which is usually well tolerated). I have no untoward symptoms at all, unless I forget to take my domperidone and lansoprazole, when I might get nocturnal reflux for two nights after the iv infusion. Don't eat probiotic yoghurts and the like. Hopefully you have hospice, nurse and gps who are looking out for your aunt. They need to know how she is feeling, as tablets can help to take away the acute anxiety so she can function and be with you. It's no shame or weakness, and you don't function through a fog or like a zombie, It helps you LIVE.

Patient loving kindness is the best approach, and through this you will have your true aunt with you. You have this to give in abundance. I wish you both well

Martin

[lynbo]

Hi

You are doing great, and going with what your aunt wants, or wishes is the best way, we only get one chance, so why try and rain on someones hopes, I have nothing but admiration for her, for being upbeat and keeping strong.

as 'smilodon' says, food, little and often, and stuff that is easily digested, i made fortified milk, and smoothies for my husband, and creamy mash and soups?

take care

xxxxxxxxxxxxxxxxxxxxxxx

[lahug]

hello again, thank you for the words of comfort support and advice.my aunt had her first post op meeting with chemo doc today. i was not there but my daughter was-she lives in canada, which makes it so much harder that we are apart..for now. denial has reared its ugly head again, but its scaring us now,and if my daughter had not been with her i dread to think what she would have said when asked questions. he asked her, so tell me what did the surgeon tell you when she came to see you after your surgery? she said well, she told me i now have a couple of small spots on my liver- my daughter had to say, wellno she actually said it had spread to the lymph nodes and there were 5 spots spread throughout the liver. she said she was good when asked how she was feeling when actually she is exhausted and has had loose bowels all night. he asked how her wound was and she said it is healing fine and my daughter had to say well actually it was seeping when we showered her, so it was all cleaned and dressed. the word palliative was mentioned but not in reference to her and she got frantic, saying dont use that word, dont use that word. if she was alone at an appointment i fear she would come across as better than she really is, i told my daughter she is probably very frightened, and when i spoke to my aunt a short while ago, we were talking about different chemos and she said if this one doesnt work, they will try others till they get the one that will cure it... i said margaret, there is no cure for pancreatic cancer(she knows this!) and she shouted to my daughter do you hear what your mum is saying, there is no cure for pancreatic cancer, i dont need to hear this. then i felt awful and tried to backtrack when all i wanted to do was cry..its a terrible strain.a p.e.t. scan is being arranged for her, probably next week, has anyone had one? sorry to go on a bit,i feel so helpless, and my 23 yr old daughter has a heavy load on her shoulders and i feel it should be me. thank god she is a wonderful girl.

thank you for listening..will post results of the pet scan and her frame of mind when i know.my thoughts are with all who contacted me, take care x