Saturday, 8 May 2010

Just a glimmer...

You are in a long dark tunnel and its absolutely pitch black. Suddenly up ahead there is a tiny speck of light... just a glimmer.. but it makes your heart leap with hope.

Well, as I said before, what a difference 24 hrs can make. Dr Steve, St Mary's consultant,came to see and examine me. After just 24 hrs of high dose steroids I can move my legs again ! Up and down, side to side and even raise them off the bed. This is apparently a remarkable response and I sign that radiotherapy could indeed work. I can only stay on the steroids for a few weeks because of the problems they cause and so the problems with my legs would return. With radiotherapy I would have an 80% chance of shrinkage lasting for maybe a few months !! I will have to have an MRI scan to see if my spine is stable and if it is I can at the very least use a wheelchair again. He is going to discuss changing back to Sutent with Dr P too which if Ok, should reduce the need for blood transfusions plus (fingers crossed) start shrinking my tumors again since I've had an 8 month break from it.
So another huge shock.
And another big decision.
How brave am I ?
Can I grow through with awful radiotherapy again ?
The side effects will be very worse as my whole spine will have to be treated. Dr Steve has promised he will dope me up with mega pain killers for each session and they will keep me here at the hospice throughout the treatment.
Am I strong and brave enough to keep fighting ?
One look at Martin's face gives me the answer. Whilst there is a glimmer of hope I can't stop fighting, not even now. Even if the radiotherapy works this is no cure of course but it may make my final weeks/months much more comfortable and would possibly mean I wouldn't be bed bound. The change back to Sutent may work or may not but if it does may slow the progression of my disease elsewhere again.
There are no guarantees, I know that, I have been treading my own path fighting RCC for some time now in the hope it may help not only me but those who find themselves in the same position as me. The one thing I have learned is that you deal with one problem and another pops up straight after.
The most important thing with all the operations, procedures and drugs is to remain steadfast, strong and positive. Smile and laugh with those around you... even if there is precious little to smile about.

Jane

PS. Reading all the comments and thoughts from those following my journey has left me quite emotional and even more determined to fight to the very very end. May I thank all of you from the bottom of my heart especially those who have taken comfort from my words to combat their own personal grief.

18 comments:

mortonlake said...

my god love.said it so often but you are bloody amazing.whatever you decide jane i wish you all the best,keep fighting while theres a chance,you are an inspiration and hope to so many.you owe me a large box of tissues,ive shed enough tears over you,lol.you and martin are always in my thoughts,take care my friend,love mort xx

ADB said...

Where there's hope there's life, Jane - which is a reversal of the old saying. I am very pleased indeed that there is prospect of an improvement in your condition, even if with some mega side-effects. Certainly worth the effort if the decision is made that (on balance) the treatment would be beneficial to you.

You are inspiration to many, Jane, so keep fighting the good fight!

Andy said...

Like you I have had to make decisions about treatment. I had to decide to take part in a trial of a new drug Ofatumumab and I thought of you and in my mind i knew you would say go for it and I did with a good result. 11 months ago I was told I would die in a few months, now I am back at work! You are a true inspiration and I know you will make the right decision, as ADB says where there is hope there is life.

Andy

LYN said...

WOW..THIS WAS NOT WHAT I WAS EXPECTING TO READ BUT AS ALWAYS JANE YOU AMAZE ME..WHERE YOU PULL YOUR STRENGTH FROM I DON'T KNOW ..YOU ARE AND ALWAYS WILL BE MY WARRIOR GIRL..

BLESS YOUR HEARTS...

Sugar said...

Only God knows when our journey here will end, & our next one start. God bless you Jane. We are all praying for you, & your family.
Sugar

Deb said...

You ask "are you strong and brave enough?" oh Jane....you are the strongest an bravest woman I have ever known and my husband holds that status in the male category.
Your post today shows encouraging steps ahead so go for it girl...I just know you CAN do it!!!
The Afinitor is an MTOR inhibitor while the Sutent is VGEF so with RCC who have to keep changing and keep going back on previous treatments.
Wow..you just made my day a whole lot brighter Jane...travel that tunnel Jane and I just know you will be surrounded by complete light!
Take care,
Deb

jimjam said...

Jane, you are truly blessed to have such an excellent and positive medical team around you, I know that some RCC oncs are not so good and seem to give up reasonably early. Don't give up, even when the fighting gets tough, and it does, doesn't it. Let that light shine bright for you.

Jan said...

What a lovely surprise to get this entry very well done ,Jane you are amazing ,bless your dear heart ,and I hope you get a good result if you go for this option ,you know we are all in your corner rooting for you ..love Jan xx

Jackie said...

Jane WELCOME BACK you have more strength and determination than anyone else I know and through your courage we all fight harder and harder.
I've booked a holiday to Mallorca for a fortnight,my first since diagnosis, I just thought of you in Brazil and thought yes I can do this!
You must give your doctors such inspiration and admiration with your continued acceptance and your resolve to do your damndest to keep gritting your teeth and going forward. They will do whatever they have in their powers to help you through and I hope your journey is kept as painfree as possible. Sutent has worked for others after a break and I'm sure it can do so for you! I am crossing everything I can.Keep blogging Jane and we'll keep sending hugs and strength your way. Jackie xx

Manuel Lopez said...

Dear Jane, you are one of the brightest lights on this awful journey. Not just for me but for every other Warrior who is fighting cancer.
We all hope you win this and we pray the cancer is beaten so you can return to the life you love so much.
Keep fighting and never forget there many praying for your recovery.

karen in ottawa canada said...

speechless - that's how you've left me. i send you love & hugs across the pond as always - and across Canada this time too as I'm holidaying on the far west coast this week. my heart, ever grateful for knowing you, is with you.

Melissa said...

Your grace, courage and strength astound me. Sending love and prayers your way.

Cruella de Surf said...

Wonderful news. What an inspiring lady you are. Positive hopes and thoughts from me come with you on the next stage of your journey. I'm continuing to pray for a miracle for you Jane. XXX

Denise_pike said...

In my last message I said I really hoped for a magical miracle cure and that I love happy endings. If anyone deserves a happy ending and some out of this world miracle it´s you. Lots of luck , as the courage you already have. Love Denise.

Alexei said...

Your last post sounded much more like yourself. Go for it Jane, if anybody can fight on it's you.

Funnyface said...

My Dearest Jane,
You are truly amazing. You go from strength to strength, not just physically but mentally too. Your family must be so proud of you. I feel so humble to know a girl like you.
Much love, Jaynee X

Joanne said...

Jane,
You are truly amazing, my hero.
Hugs
Joanne (Ontario, Canada)

Shirley said...

Jane.
It was wonderful to read your blog this evening. You are a "fighter" and a living inspiration. Im lost for words here, - with my eyes welling up...Just carry on "fighting" - cos you are the best..
God Bless, Much love to the family.
Shirley xxxxx