legalities etc

Erm, not sure how to say this but it would appear that we have explored all orthodox medical avenues and they have turned into cul de sacs....

Sutent is obviously not working so perhaps it's time to explore other avenues.... which of course may also turn into cul de sacs....

Would I do this if it was me with phaeochromocytoma?
Would I be googling and exploring, looking for a solution, a prolonging of life?

Somehow I think not....  but it's not me... it's the man I love and I don't want to see him suffer.

So check out Pam's story ( http://lifewithpheo.blogspot.com )  and tell me what you think... Am I grasping at straws ?   Could marijuana lower Ian's hormone levels?

Is medicinal weed available in the US the same as the weed we could buy (illegally) in the UK from someone who grows it in his basement/shed etc...?

There are ways of "smoking" weed without the tobacco - vapourisers for instance - which are easily available, but getting hold of the weed itself is a different matter.  How can I be sure of a quality product with the appropriate levels of THC?  What if it has been sprayed with chemicals or something else?

So many questions, so little time...

The priority now is maintaining hormone levels within acceptable limits.  Adrenaline levels of 40000+ is not acceptable.  My main fear is CVA (a Cerebral Vascular Accident or stroke)  I don't want the man I love to be crippled, reduced to a vegetable, immobile, incontinent and unable to express his needs.  Of course this may happen anyway but it's a Hobson's Choice when you are faced with watching your loved one either deteriorate from cancer, have a heart attack or suffer a major stroke...and medicine can keep you alive for a long time in a debilitated state these days...

I've always had a "living will" and a "death plan" my nearest & dearest are aware of so my life is not prolonged unnecessarily.  I don't want any heroics should I personally suffer a major event but the big lad doesn't have this in writing and legally I could be in big trouble if he became debilitated and chose to end his suffering, despite knowing he really wouldn't want to endure the humiliation and despair severe & prolonged illness can cause...

So, what to do? 

Decisions, decisions, decisions...

Comments welcomed......

Love, Life & Complications...

Over the last few months Ian has been feeling well.  He has gained weight and the drop in his adrenalin levels have vastly improved his general wellbeing & mood.  With funding for Sutent (Sunitinib) now being provided by Pfizer the worry over funding/money/battling the unfairness of the NHS has ended.  It was a huge relief and enabled us to regain our lives.  We found each other again and remembered why we had fallen in love all those years ago.
I've learned to live in the present, not worry about the future and enjoy each day.  Ian has got his life back and is no longer dominated by cancer.
Unfortunately recent tests have shown an increase in adrenalin levels again.  Back up to 42,000: higher than they were pre treatment with Sutent.  Although he is feeling OK and we are maintaining a "Que Sara Sara" attitude there are many nights I don't sleep. Despite the reassurances from the consultants that the tests aren't always accurate and the fact that Ian is feeling well I can't help wondering if Sutent has ceased to be effective, or another "phaeo" is happily proliferating in a hidden corner of his body somewhere. 
So we are spending time with friends, enjoying the often bizarre local summer festivals and Derbyshire customs.  Ian is applying for tickets to every game at Old Trafford (the only place I am allowed to sing in public!) and we are hoping to see the comedian Ross Noble and possibly John Simm in Hamlet in October.
Whatever happens now my job is done.  I have saved Ian's life many times now: through a combination of luck, recognising symptoms, providing appropriate care and juggling his medication.  Debra, Claire, Elaine, Gill & Robyn amongst others saved me too and got me through the most despairing times.
I'm not a great believer in fate, nor do I have any faith in deities but I wonder if my early experiences in life gave me the resilience and tenacity to fight the system, manipulate the media and give Ian the best chance at life. 
It's been a year now since Ian was literally dying.  We've worked hard to strengthen our relationship and I'm happy we have had these 15 years of laughter & passion with all the ups and downs and have got back to where we were; the first night we met when I knew he was "the one".  Many people go through this life without ever finding the love we have shared.  We've been lucky.  So I raise a glass to Doris Day "Que Sara Sara" (Whatever will be will be)...

And so it all began...

With a stutter in a gene...somewhere remote probably, a fluke occurrence somewhere between interphase & mitosis at a guess.  Maybe it occurred pre birth, maybe later something somewhere in the complexity of human development went haywire.  The how or why isn't really important.  What is important is dealing with the here and now... and so our "cancer journey" begins