New here...

Wow.  CUP really sucks, huh. 

I know what you mean about regular scans / tests becoming too much.  I'm on a trial schedule and a schedule from my initial treatment.  They are overlapping this month and I got a request for a CT at the end of the month.  But I just went for a baseline scan at the start of the trial so I phoned in and said "nooooooo, too much.  Let's drop it!".  

Hi Zarasmum and welcome! I hate to say this but the scans, bloods, oncology and other appointments are par for the course here!

At first they are regular. I visited mt Oncologist every month for over 4 years, regular scans MRI & CT, blood tests etc in between times. Yes you are right, at the beginning I took it day by day, not even month by month as you seem to be. Between monthly appointments we (my husband and I) tried to arrange a day away or if I was feeling up to it a few days away, to make memories. It is not an easy thing to do but you have to try to LIVE while fighting incurable cancer because a lot of incurable cancers are treatable. I have just included the scans etc in my routine but try not to focus on it too much and focus on what I'm going to do, in between appointments.

I have now been doing this for many years and for as long as the oncologist wants to check all is well, then I will do that. Better safe than sorry. Immunotherapy has a good reputation for working well. Good luck with whatever you try!

Hi Zarasmum 

Hello and welcome to our incurables group. Sounds like you've had a tough time. I can't imagine how you feel after 18 months of chemo. I had 6 cycles last year and am still feeling the effects, chronic fatigue and toileting urgency from the radio. I live one week at a time and I know how you feel, it does get wearing, for me and my husband, who probably didn't picture his retirement like this. I get times when I wonder how long I've got and whether I'll see this and that but I read a book a little while ago which made me a bit more hopeful. It was Radical Remission by Kelly A Turner. Basically she researched people that have survived against the odds and the reasons that kept cropping up. I know they are rare cases but it lifted me a bit.

Best wishes for any more treatment you may have.

A x

Hi Zarasmum, that is some journey you've been on, you need a medal for copping with this, I agree with what the ladies are saying, must of us are past our sell by date,so life is for living, so do what you want to do and enjoy yourself. Big hug.

Good luck Zarasmum.

You have had a tough time and my heart goes out to you.

Big, virtual hug.

Mags123