So scared!!!

Hi guys..

I'm new to this site and after having a read and a sob at some of the sad stories on here have suggested my mum joins just so she realises she is not alone.

My wonderful dad, Ray, has been diagnosed with pancreatic cancer, it is to far advanced to operate, its spread to his liver and lymph nodes, they are starting chemo next week to attempt to slow the growth down and ease his pain.. this is all such a shock, he's 62 and has been fit and healthy apart from kidney stones and diabetes that became insulin controlled last year..(now we realise it was probably the cancer that had bought the diabetes on)

I am struggling with all of this, i adore my dad and do not want him to die, any advice on how i can help him and my mum through this will be gratefully received. I have a family of my own but dad comes first now as i know time is ticking bye, i just dont know what to do.... this is all so sudden and 3 weeks on it's still not sunk in.

Love Karen. xx

Hi Karen and welcome to the gang!

It's natural to be scared and to feel that the world has been turned upside down - I remember feeling like that for quite a while after my husband's diagnosis. Ted is 63 and, like your Dad, was always as fit as a fiddle. It was too late for them to operate on Ted too, so their stories are very similar indeed.

Chemo is such a scary word, isn't it? If they're anything like us, your Mum and Dad will be pretty worried but you can reassure them it's not as dreadful as it used to be. Of course, everyone reacts differently and not everyone is on the same drug(s). Ted had gemcitabine monotherapy (ie alone, not in combination with any other chemo drugs) and apart from a bit of nausea and feeling more tired, he was fine with very few other side effects. Oh, he had a little hair thinning but that wasn't such a bad thing - he doesn't look so much like a mad professor now!

If you've done a bit of reading on the forum you will know that some other people have had worse side effects, but that's by no means inevitable and even then it's still not as terrible as, say, 10-15 years ago. Most of the side effects can be dealt with by other medication and a bit of TLC.

When Ted was diagnosed and they told us it was probably a matter of months, it was like my world ended, so I really do know what you'[re going through. I'm pleased to say though (*touch wood*) that more than a year on, he's still very much here and getting on with life. After the initial shock wore off (and it does after a while, honest!) we decided that we would make the necessary adjustments but we weren't going to focus on the cancer, just enjoy each other. It helps to give some semblance of normality and that is so important.

That's not to say that will be right for you or Mum and Dad - everyone finds their own way of coping. Mine is by researching in depth what trials and treatments are available and whether Ted would be eligible to be included in a trial which looks promising. We recently met with some doctors at University College London Hospital but in the end Ted didn't join the trial for a number of reasons. Still, it keeps us hopeful and positive to know that real research is going on.

Some people find it easier to "not know". That would be torture for me. Whatever the right route is for you and your parents will gradually become apparent. For the moment, you just need to be there for them both. Some TLC and a comforting word mean more than you could ever know. It's obvious that you're very loving and supportive, so just be you - after all that's what your parents brought you up to be!

One practical tip I can give you is to get to know the specialist nurse assigned to your Dad. They are more accessible than the consultant and often can facilitate quick appointments, give advice and generally support both patient and family. They also have contacts at other support agencies and networks so can often help there too.

What part of the country are you in? I'm down south in Hampshire and we're very lucky that our local hospital is a specialist centre for pancreatic cancer. I do hope your Dad doesn't have to travel far to his chemo clinic.

Do keep in touch and let us know how things are going.

Kind regards

Nicki x

Hi Karen, my stepdad was diagnosed last March with pancreatic cancer, fortunately it was operable and he had a whipple procedure followed by 6 months of chemo onky to be told the week before christmas that it had spread to his liver, he has now just started a new round of chemo which will hopefull give him a bit more time. I totally understand how you are feeling, I have never been so scared as I am at the prospect of losing him, I make sure that nothing ever goes unsaid and that I spend as much time with him as I can. I have 2 children who idolise him and him them so Itry to make sure he sees plenty of them. I feel I'm rambling a bit too much about myself here but when he was first diagnosed it helped me so much to know that I wasn't alone and to have an outlet for all my sadness and most of all anger. please keep in touch on here because believe me it really does help, there is some fantastic people on here with good advice and a 'virtual' shoulder to cry on. Take care x

Hi Emma and it's nice to hear from you again. I'm so very sorry to hear that your Dad's cancer has spread to the liver. You're not rambling at all but if you need to chat do start a new thread so that all of us can try to help.

Nicki x