Asymptomatic but incurable. Struggling to understand

Thanks Rainie. I’m still fit and well and got things booked to look forward to. So long as I’m still in the game I’ll do my best to stay positive.

Thanks for such a thoughtful reply, A.

Hi Annette, sorry i took so long to reply, crap morning + appointments, it is mid summer in Sydney nice when it's cloudy too hot when sunny, i have green eyes so have less melanin. Can sympathise with poor sleep, went 16 months on 2 hours a night. lots of help i'm up to 4. Did look into dog passport but as the only place i was ever likely to fly to was Aus i couldn't put Poppy in cargo for a day. When we went on the ferry i used to get up half way across just to look at the stars, amazing. 

Eddie

You are right not to ask for a life expectancy prognosis. They rarely know because it varies so much from patient to patient. Just remember that nobody really knows how long they have got. People can live for many years on palliative treatment. Treatments have improved greatly and they are able to extend quality life longer and longer. 

Hello MarkWFD. not posted for a while, I hope you are doing ok. I know you are also on the head and neck forum and just wanted to say if we can help in any way you know where we are, take care.

Eddie

Hi Eddie. Thanks for getting in touch; it means a lot to me. I hope you’re OK in the circumstances.

Things have improved somewhat in that I’m to have some radiotherapy on the lung/chest mets in Feb alongside indefinite immuno. We’ve had to push a bit to get the radio and have to pay for it but thankfully have been able to get the £ together. So the hope is to get rid of the evident cancer and keep the systematic stuff at bay for as long as poss. Feeling more positive although always reminded that this is, overall, palliative treatment.

That's good news Mark, getting treatment and fighting back makes us all feel a little more positive, I'm sure it wasn't cheap but it seems to be happening quickly which is good. You will get used to the palliative side of things and won't think of it so often and get on with life. I am not bad, had 4 tests this week, same day, half way through Dr told me to go and relax as next test in 90 minutes, so i went for a massage, Dr  not very happy, I'm really happy your feeling better, it's a hell of a blow a diagnosis like ours, I hope the treatment does it's job and blasts the little bas#ards to hell, I don't know if you have had RT before but you will find the radiologist so helpful and supportive and will answer any questions they can or find someone who can. take care and feep in touch, we may be an older generation but we understand.

Eddie

Thanks again Eddie and good for you(!)

I had 30 fractions of radio last summer. It was pretty hardcore and my mouth hasn’t recovered even thou all the cancer has gone. That said, I’m told what I’m about to have will be a walk in the park in comparison. It’s MRI guided/SABR. The only likely side effect is a bit of tiredness.

Thanks for letting me know, i know very little about SABR, though i know a few who have had it on one of my forums, but my guess you have done your homework, take care.

Eddie

I’m glad you are getting the radiotherapy and sorry you have to pay for it. I hope it will be effective.  I have had immunotherapy and radiotherapy. Palliative is a horrible word and so is incurable or terminal cancer. I think of it as ‘living with cancer’ in the same way other people live with other difficult illnesses. 
When l was first diagnosed, l could think of nothing else apart from the fact l was going to die soon. Life didn’t seem to have any purpose. My prognosis was about 2 years but l am still here three and a half years later. I don’t think about it much now… So try not to dwell on it. Try to make the most of every day.