My Dad

[SteelCityBaggie]

My Dad is 65 this year. I lived with him when he split from my mother when I was 16. Soon after that I went to University. I lived with him for a year before moving off to another university and settling in the city where I am now, about an hours drive away. We have season tickets to West Brom and go to every home match along with either my daughter or adoptive son. He has been taking me to the footy since I was 8. I am always there to help him with his computer problems, and he is always there if I have problems wih my business like I did a few years back. We don't phone each other every day, we are not that sort of family, but we are there for each other when the needs arise. He adores his grand children, and was very supported when my wife and I decided to adopt. He has been retired a couple of years now having sold his business, and he and his wife enjoy a very active retirement travelling all over the world etc etc. He used to be a heavy smoker, but gave up several years ago. He cut out red meat several years a ago too, and eventually cut out meat all together. He has made a concerted effort to keep himself fit by exercise and healthy eating.

A few months back he was noticing he was becoming breathless. He went to the doctors who immediately sent him to the hospital for tests. They found out he had fluid on his lungs - or more accurately, between the lungs and diaphragm. He went back to have his lungs drained, samples taken from his liver and various scans. While waiting for the results, which seemed like weeks, his lungs started filling up again. He went back to have them drained again and was told the biopsy from his liver was inconclusive as they had taken dead tissue, but they knew he had a tumour on his liver from the scans. They took another sample, and the wait started again as his lungs filled up again.

Yesterday, he went back to the liver specialist for the results. He has cancer on the liver, which is secondary to either pancreatic or bile duct (I think) cancer. He is seeing the oncologist next Wednesday.

I am not coping with this very well at the moment. My Sister, who lives a lot closer, tells me he is relatively upbeat, almost relieved to know, as he always suspected it was the case from day one. His wife is distraught. She feinted in the doctors office, and it is the first time I have ever heard her cry.

I have been on antidepressants for about a year now, which have helped me greatly, but the last 24 hours have knocked me for six, feeling almost as if I have taken a backward step. I am confused, angry, upset, numb and scared all in equal measures. I become tearful at the drop of a hat. I cry because of his grandchildren.

I took myself off work today and went walking and geocaching on my own. It took my mind off things, but as soon as I got home the big black cloud just came and engulfed me again. There are other family issues complicating things which I won't go into here, but my head is totally f%#cked up at the moment. My wife is very level headed and practical about it all, but I am afraid my mood swings will start affecting them again, like it did before I was on meds.

I am taking the day off work tomorrow again and driving down to see him. Just need to put my arms around him and tell him how much I love him. But I know he will just tell me to stop being silly . Obviously we won't know anything concrete till next week, but my sister and I have resigned our selves that it is serious and that he may not see out the year.

Thank you for listening, and I will try and keep you updated.

[PCUK Nurse Jeni]

Hi there,

Thank you for sharing your heartfelt story about your dad, and I am so very sorry that you have had this blow to come to terms with. I guess by the time you read this you will have spent some time with him, and you might have more of a picture of what is going on, and how he is feeling. I hope that you managed to give him that big hug that you spoke about, and tell him you love him, even if he told you to stop being silly.

When your dad sees the oncologist, it is likely that they will discuss chemotherapy treatment with him. If your dad is still relatively fit, apart from the fluid in the lungs, then it is possible that he will be eligible to have chemo. It depends where the primary tumour is, but the drugs used for pancreatic or bile duct cancer, (also known as cholangiocarcinoma), are very similar. It is likely that he will be offered gemcitabine as an infusion, with the possibility of adding in another oral chemotherapy - capecitabine. See the below link for more in-depth information on the drugs. http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/GemCap.aspx

It is not surprising that you feel a whole range of emotions right now - it is a tough time and hard to come to terms with the news, especially when you have a good and close relationship with your father. What you are experiencing is reasonable, given what is going on around you. The positive thing is that at least you are able to identify the emotions you are feeling, which is often more difficult for a man. It is good that you registered on here, and at least you can feel that you can put things down in black and white, and it may help you when you offload.

You are also welcome to contact our support service, by emailing support@pancreaticcancer.org.uk, if you feel it might be beneficial? I answer all emails in my capacity as oncology nurse. I would be more than happy to help.

Kind regards,

Jeni.

[SteelCityBaggie]

Thanks for your lovely reply Jeni. More than anything I ever expected.

Anyway, an update. I got up this morning still feeling pretty down. Dropped son off at play scheme and went off to do a bit of geocaching to keep myself occupied before setting off to my dad's. Don;t remember much about the journey. My mind was all over the place. I think I may even have shed a tear or two on the way.

Anyway, today was a beautiful sunny day, and got there to find dad sunning himself in the garden. Both he and his wife were very upbeat. We sat and chatted about things, and basically he is in the frame of mind that what will be will be, but no point getting down about it, certainly not until he sees the oncologist on Wednesday, which will no doubt result in another series of scans, biopsies, endoscopies etc etc, but so long as they get to the bottom of it, the better. Then treatment can commence. I came away feeling a lot happier, and am certainly not feeling as down as I was. That said, I am sure Wednesday will be difficult for me.

A bit of an update on the symptoms. Fluid on the lungs is no longer an issue, as I had mistakenly said in my first post. The main problem is the tumour on his liver pushing up on his diaphragm, effectively preventing one of his lungs from working, so I suspect priority will be to reduce/remove that tumour. Also, he is having trouble sleeping at nigh because of bile reflux, which I assume is associated with the primary cancer.

His biggest disappointment was that today was the day he was going to be booking seats for a trip to Canada. That will just have to wait I suppose

Wednesday will be more difficult for my Sister, because that will be the first anniversary of her mother in law passing away.

Have everything crossed, but not losing sight of reality completely.

Thank you for listening.

[SteelCityBaggie]

My dad went to see the Oncologist today. The cancer in non curable, as we suspected. Still no more details on the primary cancer - pancreatic or bile gland - but he starts chemotherapy next week. He will be on Gemzar, 7 weeks on and 3 weeks off and see how it goes from there. Hopefully this will reduce the size of the tumour on his liver, allowing him to breathe more easily. As you can imagine, I am feeling pretty numb at the moment.

Thankyou for listening

[Nardobd]

Hi and I'm sorry the news wasn't so good today. Ted, my hubby was on Gemzar (also known as gemcitabine) and is going back on it again. It helped him so let's hope it helps your Dad too.

Nicki