How Truthful Should I be with the Oncologist on Thursday 8th Jan 2009?
I'm sure I really know the answer but would like some advice how to handle my consultation with oncologist on thursday.
I started weekly taxol mid august for 18 weeks. Due to various hospital admissions with infections and now christmas/new year still have only had 14. Last one was 4 weeks ago on thursday.
In that time off, my solid tumour has regrown and my swallowing is becoming difficult and painful. Last time when i had 3 weeks off and I could feel my swallowing getting worse, he was reluctant for me to continue with the taxol as he said it wasn't working. This is my last chemo option so by not having it I have nothing left and will be dead in under 3 months so want these last 4 to buy time and hope that he will relent and let me have vineralbine again.
However, saw last week on GP's computer screen that I now have bone marrow infiltration - I suspected this as my iron levels keep dropping and my wbc counts are slow to come back. I'm angry as have always asked for the onc to be honest with me and withholding this info is important because as far as I can see this shortens my life even more.
If I don't tell him about my swallowing then i think he may suggest having a break for a few more weeks which by then I'll be back to pureed food. My breathing is still Ok and skin mets have not returned and lump in armpit has only grown a little so it's my swallowing that is the issue.So scared now as really feel I'm approaching the end so fast now and yet apart from my swallowing and my spine constantly clicking and causing intermittent excruticiating nerve pain, I'm quite 'well'. I can keep going all day and have steroid induced energy but can't use this energy to any useful activity.
Any ideas how I should approach thursday as I feel the onc wants to finish me off quickly so need to be strong. It's my birthday at end of month and want to go out for nice meal etc and go away for the weekend and feel this will be impossible without further chemo?
I'm sure I really know the answer but would like some advice how to handle my consultation with oncologist on thursday.
I started weekly taxol mid august for 18 weeks. Due to various hospital admissions with infections and now christmas/new year still have only had 14. Last one was 4 weeks ago on thursday.
In that time off, my solid tumour has regrown and my swallowing is becoming difficult and painful. Last time when i had 3 weeks off and I could feel my swallowing getting worse, he was reluctant for me to continue with the taxol as he said it wasn't working. This is my last chemo option so by not having it I have nothing left and will be dead in under 3 months so want these last 4 to buy time and hope that he will relent and let me have vineralbine again.
However, saw last week on GP's computer screen that I now have bone marrow infiltration - I suspected this as my iron levels keep dropping and my wbc counts are slow to come back. I'm angry as have always asked for the onc to be honest with me and withholding this info is important because as far as I can see this shortens my life even more.
If I don't tell him about my swallowing then i think he may suggest having a break for a few more weeks which by then I'll be back to pureed food. My breathing is still Ok and skin mets have not returned and lump in armpit has only grown a little so it's my swallowing that is the issue.So scared now as really feel I'm approaching the end so fast now and yet apart from my swallowing and my spine constantly clicking and causing intermittent excruticiating nerve pain, I'm quite 'well'. I can keep going all day and have steroid induced energy but can't use this energy to any useful activity.
Any ideas how I should approach thursday as I feel the onc wants to finish me off quickly so need to be strong. It's my birthday at end of month and want to go out for nice meal etc and go away for the weekend and feel this will be impossible without further chemo?
Labels: truth dilemma
posted by dippykate @ 11:18 PM
2 Comments:
At 2:21 PM ,
Anonymous said...
Hi Kate, Not sure what to say or suggest. Surely though the fact that whilst you have been on taxol, you have been able to eat and swallow shows that it has been working. And whilst you have had a break from taxol it has grown back. To me that shows taxol is working for you and you should be able to have the 4 sessions that you are still to have
Do you take someone with you to appointments that can fight your corner? Hubby comes with me..sometimes its hard for me to get a word in edgeways because he is talking!!
I wish you all the luck and best wishes that you will get your way on Thursday xx
Am loving your pictures on f/b -you look so well in them its hard to believe that you are so porrly. Your family are gorgeous
Lots of love Jools
At 12:51 PM ,
Anonymous said...
I too am not sure as it is your decision, however, I would be honest about the swallowing and yet beg for anything that might help me be well enough to enjoy my birthday meal & weekend (and some more besides!) unless it is going to make matters worse now there is some bonemarrow involvement.
Whatever, I wish you all the best for today, taking a friend sounds a good idea.
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