After 2 years husband suddenly in denial

[Nardobd]

Ted, my hubby was diagnosed with locally advanced (inoperable) pc two years ago last month. He was given chemotherapy as pallative care and his tumour shrank, tumour markers (CA19-9) decreased. Last year the tumour markers went back up and he was getting stomach pain so was given 2nd line chemo. This was cut short because it led to him getting a number of infections but whilst he was on it his CA19-9 reduced by 90% back to almost normal levels.

Now the tumour markers are back with a vengence, having trebled in the last six weeks. He had been having stomach pain during the last few weeks but last weekend decided that he would try not taking Creon. The stomach pain is much, much better since he hasn't been taking it. CT scan this week shows no change.

Ted has now declared that he doesn't have pc . He explains away stomach pain by saying that the Creon caused it. He explains high CA19-9 by saying (correctly) that this could be a result of gallstones which were diagnosed at the same time as pc. Have asked for PET scan but the consultant says that it gives both false-positives and false-negatives and says it won't take us any further forward. All the consultant can offer is another biopsy but says that negative biopsy doesn't prove no malignancy. Ted points to others with inoperable pc and says that he doesn't have the same progression of disease. Consultant explains this by saying that he is extremely reactive to chemo and very lucky.

Don't misunderstand, I'm delighted that Ted hasn't deteriorated in the same way as most people with the disease and very grateful that he's still here but I can't pretend to understand why. Ted's explanation is very positive and tempting but I can't imagine that it's true.

All this has thrown me completely - I feel like my life has been turned upside down again and I can't seem to get my head around any of it right now!

[Ellie]

Hi Nicky

I've been wondering how you and Ted were getting on. We haven't heard from you for a while.

What a strange situation you are in! I can imagine that it's really bugging you, because you want it to be black or white, like I would. To be in limbo, not quite knowing or understanding what is happening must be so frustrating for you. It would be easy to say don't worry too much- just make the most of knowing that Ted is holding his own, but that's not easy to do, is it?

It's probably down to taking one day at a time and holding on to that feeling of being grateful he is still with you. Things could certainly have been much worse, like you said.

Thinking of you

Love

Ellie

x

[ladywood]

Dear Nicky, I dont really know what to say, how strange and I can imagine very unsettling for you. I wouldnt want you to have false hope but Ted IS different from most people diagnosed with pc so maybe he'll carry on being different and astound all the medics! It sounds like he's getting excellent care anyway so as Ellie said just take one day at a time and see how it goes . I know you cherish every extra day you have with Ted and please god you will have loads more time together. I'm not that good at putting my thoughts in writing but wanted to say something, as you were so kind and helpful to me when I first came on here. Wishing you and Ted the very best. Let us know how things progress. Thinking of you. Love Marie x

[Nardobd]

Thanks Ellie and Marie

Yes, it's taking it one day at a time again...but then you know I've always had trouble with that concept! It's just difficult coping with a sudden change of attitude and, as you both know, it's bad enough having your life turned upside down once, without someone then trying to turn it the right way up again! Our nurse specialist has said that when patients do as well as Ted, they seem ok for a long time and then go downhill very quickly, so let's hope that's wrong too. I'm sorry to winge on, especially when there are others so much worse off.

Thanks again for your support.

Love

Nicki