denial becomes reality

hi everyone,

i have recently posted about the concern i have for my relative because she seemed in utter denial about her illness and it was worrying me.

she called me last night fairly frantic, saying she now realises she is at stage 4 and what that means. she was sobbing, scared and distressed. we are very close and it was soul destroying. in a way i am glad that the realization came from within because i didnt want to destroy her hope and positive outlook.she sees the doctor on friday re starting chemo so we will take it from there. she is obsessed with the 5 spots on her liver and wondering what that means exactly, but i'm sure he will tell her on friday. thanks for listening.

Hi there

As I think we said at the time, each person has to take the news on board in the way that is best for them. It's taken a long time but I am pleased (in a way) that your relative has now accepted the situation, altbeit that it's frightening for her. From here the doctors can advise her and you can all move forward together, speaking openly and honestly. I'm pleased that she has an appointment to see the doctor so soon and hope that the chemo helps.

The spots on the liver could be anything - if the radiologist was sure it was a spread they would have said so. Your relative can ask the doctor on Friday and see whether she can get any more enlightenment then.

Your love and concern for your relative is evident and she's lucky to have you.

Nicki

thank you nicki, i do love her very much, and i will do whatever needs to be done to help her. its all about her.

Hi again

I re-read your original post, and while they were doing the bypass they would have taken a biopsey to see what the liver spots were/ type of pancreatic cancer it is. Most are adenocarcinoma, which merely means a cancer derives from a gland cell. This is the type I have, and I too have 'spots' on my liver. It's very difficult to hear you have cancer, even worse to be told it has spread, as treatment options become more limited and you do feel doomed. She will see such words as incurable on her diagnosis records, and palliative on her treatment regime, which again saps the life from you, which is a natural reaction.

The standard treatment is gemcitabine by iv infusion. It only takes 30 minutes so you are not hooked up for hours like some. It is also done on an out patient basis, so that is a plus too. I have this once a week for three weeks with one week off. I tolerate it very well, and they give me domperidone tablets to counteract any nausea. I don't and never have felt nauseous on this, but I have found that the gemcitabine can increase the intestinal stasis that the bypass induces, so with these tablets and the lansoprazole, I don't feel so bloated nor get acid reflux at night ( which can be painful and scary !). They also give an anti nauseant at the time of the iv and a dose of steroid. The only effect from this is a change in tolerance levels where you might loose your temper more easily ( that's all I have at any rate). Nor does gemcitabine make your hair fall out. Another plus.

I have just started my fifth cycle, and my tumour marker has come down dramatically. It's my birthday next week...one I didn't think I would reach. My oncologist has trouble making good news sink in, but she keeps trying bless her, and I am feeling more positive about my treatment. My next goal is Christmas, my grandsons 1st birthday and the new year. I am also getting a big telescope to look at the stars-- a boyhood obsession. So goals are important. Your aunt my see this as pointless, but as she wakes up to each new day little thoughts like this can be introduced.

She may also be suffering from disinterested surgeon syndrome, the post surgery attitude of surgeons who have done their job so it's on to the next patient. It can feel very hurtful.The oncologists I found very different. They are with you for the long haul, so can afford to appear more human. And don't forget, the whipple procedure is no universal panacea. There are problems associated with it, recovery takes longer and five year survival is still very low. ( sorry folks). I have good quality of life now for which I am very grateful.

That's the view from a fellow suffer anyway. Carers have their own feelings and frustrations they have to deal with ( I know you aren't a physical carer, but you are someone who cares deeply, so same thing). There are many support groups about. Have a look on google. My wife just wanted to go to a group meeting for carers only and just scream at the injustice of it all.

It's no ones fault . It's just life. Let your love shine through. It's all any of us can do sometimes

Martin

hello martin

just back to the forum-been unable to go on for some time, i just wanted to thank you for your very useful answer, and i will be passing the info to my aunt.

take care

laura

Hi

Glad my ramblings helped a bit.

Best wishes

Martin