Thursday, 13 March 2008

What the oncologist said - Part II

Lilies so heavy they made their own vase fall over when they opened!

I am up and dressed and it isn't even 9 am yet - hurrah! Still feeling a tad the worse for wear, but in comparison to earlier this week, I am in the peak of physical fitness and comfort! I can even swallow a cup of normal tea without retching, and that has got to be worth something!

Anyway... I saw the oncologist yesterday. I gave him a hug as advised in one of my healing books. It felt good. I felt better towards him - more of a person trying to help another person rather than some doc in an office looking at some patient's file.

The meeting was a long one. Here is what we know (if you're interested in the medical nitty gritty...)

The tumour is called a pancoast tumour in the apex of my left lung, and is Non Small Cell Lung Cancer (NSCLC for short), staged at IIIA, which means it has spread to the lymph nodes in the chest on the left side.

Okay.

It has not shrunk in response to 2 cycles of chemotherapy using Cisplatin and Vinorelbine, and is unlikely to respond to a further 2 cycles. But I've already had the 3rd, and I've decided to have the final cycle after Easter.

My oncologist wanted to sack the chemo for radio immediately, but I am going to Centre Parcs with my family (the Willow Foundation have arranged everything, more on them in a minute) and I feel that I, no WE, need this break, together, as a family, and at a time when I am well enough to do things with them. Doc says he's happy to go with this plan, and this way, we get to see if the final 2 cycles will have any effect - they might, mightn't they?!

So what we have at present is what we call 'stable disease'. It isn't growing or spreading, and it isn't shrinking either. After chemo, and a week's break, we start radiotherapy - 20 hits, one a day, at a hospital an hour or so away. And that can only happen once.

After radio, if the tumour is still there, we watch and wait. The overall survival rate after 5 years for patients who have chemo + radio + surgery, is "not significantly better" than for those who have chemo + radio. Doc says if I make it to 5 years then the chance are I will live out my life. 25 % of patients make it to 5 years, so I've got a 1 in 4 chance. Given that cancer is a 1 and 3, and I won on those odds, maybe I'll be lucky again, hey!

It's a lot to take in. Cancer is a strange beast. There are so many factors at play, and the main one seems to be mental attitude. I threw the I Ching yesterday, and it said I had to be calmly resolute, that fighting the disease with violence was useless - I had to resist it with passive determination, with love. So I'm going to try to learn to do just that.

A quick note on The Willow Foundation

This organisation arranged special days for young people (between 18-40) with a life threatening illness. I was given their website address from another patient with lung cancer, and after filling in a form they rang me and arranged everything for me and my family to go to Centre Parcs - something we never could have afforded, especially not now. If you know of anyone in my position (God I hope you don't!) but if you do, please pass on the website to them. They are a wonderful organisation doing wonderful work, something I'd like to do if when I am better. You could also donate to them if you fancied it...

So this blog will be interesting over the next few years, eh. Soon the treatment will be over and life will continue, and I'll have to work out what I'm going to do, and how I'm going to cope. There's so much work to be done on myself... getting fit again, staying healthy, meditating, yoga, etc., etc., and writing. Lots of writing and getting published.

And lots of hope. Yes. Lots and lots of lovely, luscious hopefulness.

10 comments:

Cal said...

Great news that the tumour hasn't grown by I'm really disappointed for you that it hasn't shrunk. Shrink tumour shrink! Will the radiotherapy help it shrink? Is it more effective than chemo? I hope radiotherapy isn't as unpleasant as chemo, you've really gone through it over the last few months.

But how lovely about the Centre Parks break. It sounds like a fabulous charity. I bet you're all absolutely gagging for a break. I really hope the change of scenery and feeling that you're on holiday will help lift your spirits and strengthen you. Thinking of you and beaming 'get well' vibes across the internet xx

Lane said...

Yes you do need a break. A bit of down time with family out of your natural habitat is just what you need. Loads of fun, fun fun:-) You can ride at Centre Parks too can't you?
I'm sorry too that there's no shrinkage but the odds are HEAVILY weighted in your favour. You've come this far. You can go all the way.
Luscious hopefulness. I like that.

I can smell those lillies from here:-) xx

JJ said...

Bugger about the non shrinkage. I hope the radiotherapy starts to see the b@stard off.

Center Parcs will be lovely, and just what you all need. What a fab sounding charity.

I hope your parcel arrives soon. It's actually turned into two parcels - one from UK and small one with something I forgot from Thailand. So don't be alarmed by strange second package.

JJx

Zinnia Cyclamen said...

This blog has always been interesting. Thrilled about CenterParcs, that's great news. Having things to look forward to is so important. And, yes, getting published is one of those. Just one more chemo and then you'll be off (I'm guessing from the experience of others I know that the radiotherapy side-effects won't be nearly as horrible as the chemo ones). Go, Lisa, go!

Denise said...

My sister had the 20 sessions of radiotherapy you mentioned, for cervical cancer. They weren't optimistic at the beginning but it worked completely, the tumour vanished. ALthough she found going to the hospital every day quite draining she had no side effects from the therapy, and found the pain she'd been suffering from the tumour started to diminish within days. I really hope it works the same for you. Have a fab time at center parcs, I hear it's great!

hesitant scribe said...

cal - I know! Shrink shrink shrink is what is needed! I'm also hoping that radio isn't as horrid as chemo! It's an everyday trip to hospital though, and tiring but no nausea, so that's gotta be a bonus!

lane - Centre Parcs - woohoo! And oh yes, I am going to be riding everyday, so god knows what the rest will do, hahaha!

jj - need to email you my love! will do that. But before I get round to it, you did make me cry! Tears of joy, and gratefulness, and well - just thank you so much! Huge hugs! And the second one hasn't even arrived yet!

zinnia - thank you! 5 years the man said, to home free. My husband I'll have plenty of time to write my book, but you know, I have more than one to write, so better get a move on!

denise - oh my, that is encouraging news! Thank you. I have to keep positive and hope the pain goes for me too, along with the tumour. How fab would that be!

SabineM said...

What a lovely foundation. I have to go check them out. I wonder why the 18-40 age range!
I am glad that you will be getting a break away from it all and with family!
I am sorry that the tumor did not shrink! But at least it hasn't gotten bigger so that is a great sign!

Enjoy yourself!

Thinking of you too! And sending Get well vibes from my end of the world! ;-)

Rob Spence said...

Glad to see you are staying positive. Mental attitude seems to be so important, and yours is great. I hope the break is a good one, and that you get to do plenty of horse riding. In the words of Winston Churchill, just keep buggering on, kid.

KAREN said...

Wonderful lillies!

The odds are in your favour - I too know people who have responding favourably to radiotherapy and lived a long, full life.

Centre Parcs is great fun and I'm sure you'll all feel better for the break.

Have a wonderful time and, like everyone here, I'm sending you lots of 'shrinkage' vibes :o)

hesitant scribe said...

sabinem - I think they do 18-40 for 'young people' as other charities do other age groups? Thanks for the shrink vibes - keep 'em coming!

rob - cheers me dears! I will indeed keep buggering on. Good to hear from you... hope all's well at uni and beyond :)

karen - yes - we live in hope of the radiotherapy doing wonderful things, and I'm going to try to help it with all the mindful stuff too!

Thanks everyone! It's such a lift to log in and find all these wonderful comments!