Prognosis reliability

Dear Ricardo, I think getting a accurate prognosis is one of the most challenging parts of modern medicine, every cancer patient is so individual, but doctors can only go on statistics and you are not a statistic. I have a very rare blood cancer which little is know about so I have no idea how much longer I have left, nevertheless I decided to start attending my local hospice for emotional support. This has enabled me to get on with living my life, I don’t dwell on the fact that no one can give me a accurate prognosis I just try to enjoy each day while I’m well enough to do so. If I’m out of hospital and at home that’s good enough for me. 
best wishes 

jane

I haven’t asked about a prognosis because it’s so uncertain. I’m so glad you’re still able to enjoy life . Long may you continue to prove them wrong. 

Hi Ricardo,

i had a similar prognosis in July and am pondering the same....although I am 49 and was told “a small number of months”.  At the time family agreed this sounded like 2-4 months.  I asked should I expect to reach Xmas and was told that everyone is different.  I think it is very difficult for consultants to be accurate as some people will do better and some worse - which are we? No one knows.

i think of it in terms of tumour burden and a runaway train.. in the early days, the tumours grow but our bodies cope and we live fairly normal lives. That’s where we both are today. The runaway train trundles slowly along and no one notices.  And then the tumour burden becomes overwhelming and our bodies cannot cope and at this point we go downhill.....the runaway train starts hurtling along at high speed, no longer under control.  And how fast this happens has lots of factors, how fit we are, how aggressive our cancers are, even where they are....so no one can predict this accurately.

so where does that leave us? I think it means, hope for the best but plan for the worst.  Have your conversations with loved ones now,  get your affairs organised.  Enjoy the things you love now.

i think we will always want more time, whether we are 91 or 49 but perhaps what is more important is to think about what we are doing with the time we have now.  Easy to say but hard to live.  I hope to see the spring, which I love but I know this might be a long shot.  But I might plant some bulbs just in case.

Thinking of you and hoping you have had a good day, love heather xxxx

Thank you for this, Jane. This is exactly what I am trying to do, but it is not so easy for the family. However it is what we must do.

i am certainly not in hospital condition and am still very active. Long may it continue for both of us.

Thank you for this Roobarb. I’ve had 40 years more than you so my heart goes out to you. The more I ask the question with the Doctor, the Hospice support lady and now here the more I realise that I just need to “get on with living” . We are now making plans for Christmas, which I never thought I would see, and working on the basis that having a goal to work towards is good for us.

i like your analogy of the train, most of my affairs are in hand, Power of Attorney, Will etc. I just have to clear my desk drawers etc etc!!

I look forward not backward and try to get family and friends to do the same. In addition the Hospice support is super. I am going to the “Mans Cave” tomorrow!

Keep smiling.

Dear Ricardo, I’m glad you found the advice of fellow forum members informative. It’s heartening to read your making plans for Christmas. The hospice is a great way to stay focused on living well and provides fantastic emotional support through the simple act of friendship.i wish you and your family all the best .

jane

Thank you I must admit I struggle every day and sometimes things seem very bleak indeed and I have not got peace or acceptance of my situation. And I see my family struggle too.  However in amongst everything there are good moments and I have happiness and joy.....almost like a normal life! Like you I am tentatively thinking about Xmas and try to look forward and not dwell on things too much. And thinking of you doing the same does help.

and today is a lovely sunny day after a lot of rain so I am hoping to get out on a pony and look at the scenery (mostly mud at the moment).  Have a good day in the man cave x

Dear Roobarb, I was sorry to read you have been struggling recently, I think thoughts of celebrating Christmas stirs up a lot of emotions, as for families it’s a special time of year. I don’t have any children or extended family so it’s much easier for me to bypass the whole thing. However don’t let anything stop you making plans to have a magical time with those you love, having goals to reach for is important for all of us, for me it’s to spend quality time every day with my long suffering husband ! I think we’ve spent more time together since I became ill than we had in years and I treasure each and every day.

jane