i'm also very sorry you and your family are going through this.
my dh was first dx back in feb 02. since then he's been at death's door many times, but still he beats the odds and comes back for more.
you'd never know by looking at him just how much his body has fought, and his quality of life is very high.
atm he's downstairs singing irish drinking songs while making breakfast.
cancer doesn't always kill right away--it may get him yet but in the meantime he's living large if you know what i mean.
Being the spouse of a survivor, and being raised by wolves, I had no idea how to deal with the initial diagnosis. Family was no support, and of course I couldn't ask DH what he needed because HE didn't even know.
Sounds like you've got the best facility available to you. That's number one. Yes, have someone go with dad to appointments because he'll never remember to ask all his questions, and recall all the replies by himself. Go to appointments with pen and paper in hand, and questions already written down.
The net is useful, but in the same breath I'll say to take it all with a grain of salt. DH dx changed more than a half dozen times before they got it right. Each time I researched the new disease and made myself more nuts. What they finally decided upon was something essentially with a death sentence, a cancer combination that prior to him, did not exist. Research and the doctors gave him less than 5 years. It's been 8 and... knock wood.. so far so good.
Don't be surprised if dad starts to push you away. He's got an awful lot to process and doesn't know if he has the energy to share with others.. he needs to focus on his own healing.
They often say that cancer is harder on the caregivers than the patients themselves. I believe this to be true. Dad my shut folks out, start being secretive, start acting weird. No matter what he does, what he's doing is going to be just fine for his own journey. He is the only one who matters. Which is why I suggested you find a group. You won't be able to be open with dad about some of what you're feeling and that's what the group is for. As well as for the times he starts shutting folks out.
If family is suddenly coming in to town in droves, stay at a hotel. Inundating the patient's house with an influx of folks and kids is going to be distracting and exhausting. He's going to tire more quickly but won't want to mention it. He also may feel like crap, so descending on him expecting him to be the same old dad may be a little unrealistic. Limit visits to a few hours each, then leave him to nap, or snooze.
I'm rambling.. there's a lot more to it. But if you truly keep the focus on dad, you should be fine. Expect the worse, prepare for the best, get 2nd and third opinions, and don't freak out -- because every ounce of energy you waste worrying, freaking out, etc, takes away from the care you can be giving him.
It is a shock. I know.
Take some time to do somethings for your self. It will make you stronger. If you have a horse, ride. My mare helped me through chemo, by just going for a walk.
Read a good book that doesn't have any heartbreaking parts.
Go shopping with a friend.
Hugs to you and your Dad.
My father died this year on Flag Day of cancer. It was his 2nd go round, having been originally diagnosed with lung cancer two years ago.
He went thru chemo, radiation, had about a year's remission. Then, it came back & metastasized. He was scheduled for more treatment, then opted not to do it.
We went home mid-March to see him while he was still able to be somewhat active.
After that, I sort of buried my head in the sand and was thankful to be across the country so I didn't have to personally witness his decline. My sisters flew back and forth to see him, spend time with my mom.
I just couldn't do it.
Do whatever feels right for you. And according to your dad's preferences.
Thank you all for your support and tips. I am lucky that I work in an excellent academic/medical research university and fortunately with that comes great contacts. I'm going to be consulting with some of the leading cancer docs at my institution to get advice and perhaps even a referral to a colleague who specializes in my dad's type of cancer. We will make sure he gets the best treatment he can, and hope for the best. Feeling slightly more optimistic, and hopefully will have good updates in the future.
As a primary care provider, IMHO, the initial diagnosis and staging causes the most anxiety for patients and their families. Once the diagnosis is confirmed, hem/onc moves pretty quick to initiate treatment modalities.
I know when I worked at 2 seperate academic centers, there was a patient advocate who worked with our cancer patients and was sooo helpful for patients. If your Dad has a good primary care provider, stay in very close contact with them- meet them, get your Dad to ok (& on paper) that it's ok for the PCP (and hem/onc) to talk with you about his status, meds, concerns etc. That is very very helpful, will reduce your stress and keep the "what the md/pa/np said" from being forgotten, confused, or wrong.
For now, it's a scary diagnosis and you can help your Dad & family best by getting medical info from reputable sources (mayo, aafp, etc) that has literature citations vs a "forum" board UNTIL you are further along. Then, whatever. But right now, the basics of eating, sleeping, exercise (riding!!), friends and family are what will hold you together.
I wish I were closer and could help more.
I am so sorry.
And the wise, Jack Daniels drinking, slow-truck-driving, veteran TB handler who took "no shit from no hoss Miss L, y'hear," said: "She aint wrapped too tight."