Friday, 12 December 2008

A small price to pay

Im not quite sure where Ive got this new found confidence from - Ive never been a shrinking violet exactly but now Im finding myself going into meetings/interviews full of people Ive never met, walking up to them and introducing myself. Maybe its because Im so selfsure of the subject we are about to discuss or so determined that my voice, and that of other patients, will be heard.

The past 2 weeks have been full of such meetings - PCT patients committee meetings - and on Monday I met with a medical research company to be interviewed on the side effects of Sutent. I was especially pleased to take part in this. Much is made of the side effects, after all the treatment, although it isnt called chemo, is tantamount to chemotherapy in that the side effects are the same. And looking back over this blog I have moaned about them often enough !

But the fact of the matter remains, a fact I wished to reinforce with the pharmacutical companies, however unpleasant the side effects can be from time to time its a small price to pay. For what it the alternative? And apart from a few days over the past 9 months life has carried on pretty much as normal for me - just look at what Ive done, where Ive been. what I have achieved - and none of that would have been possible had I not been on Sutent.

In fact to put it very bluntly - I would be dead if it were not for Sutent - thats the bottom line.

Still, its encouraging to see the drug company who make Sutent are looking at the side effects, especially the long term ones, presumably with a view to 'tweaking' the drug in some way to reduce them.

The interview, which took over an hour, highlighted 2 things. That patients need to be fully informed of the possible side effects they may suffer and the fact they can be controlled and managed to a greater extent - and how fantastic (the interviewers words) I look right now. He also commented on my 'seemingly unshakeable' positive attitude - no matter what was thrown at me.

Ok - so I may have diarohhea, sore hands, cramps, and various other unpleasant visitors for part of each cycle but the fact is Im still alive. Like I said, its a small price to pay. And how lucky am I to have been funded for Sutent anyway.

Christmas is almost here, a time to look back and be thankful for everything the past year has brought you - and I have so much to be thankful for.

Tomorrow Catherine and I are off to Fuerteventura for a week - for some Mum and daughter time which I think is badly needed. Of all my children Catherine is the one who worries me most. At times she displays quite a lot of anger towards me - its something I understand completely. My own mother died when I was young and for ages after I felt so CROSS with her for leaving me. I think its a natural reaction but one that needs to be talked about and dealt with, hopefully she can recognise why she is feeling this way.

And it will be a nice week in the sun (hopefully) and a rest before Christmas really hits me when we get home !

I also start cycle 9 tomorrow - Im starting to feel an old hand at this now !


mortonlake said...

my dear have come so far ,done so much,suffered like hell.but you are here.and as you say,thats all that matters.from the first time i read your journal i was so impressed,and awed by your determination,your sheer bloody mindedness to live,and keep going. you proud.enjoy that sun,have a lovely xmas.its you that has helped me cope when times got bad. thanks for sharing with us your and my best wishes for the future,mort xxxx

LYN said...


Yasmin said...

Glad to hear your getting on with things and your positive attitude amazes me "you go girl" and have a fabulous time with your daughter, I'm sure she'll appreciate the the time you will spend together.

Take care


Deb said...

Congrats Jane on becoming such a wonderful advocate for not only yourself, but many other cancer patients out there. My motto is always "if I can help just one person, then it's all worth it" and you my dear and helping so many others through your commitments. No doubt, it is a busy schedule at times but cancer patients need a voice and I can tell you are very passionate about what you do.
Bravo for Sutent!!! My husband also would not be here if it were not for that drug, so I share in your excitement as well. He now is on continuous 50mg and doing good....amazing!
You and your daughter have a wonderful get-away now and take care.
Hope to hear from you when you get back home.

Sybil said...

Hi Jane, you sure are a great great woman and are admired by us all very much.
Have a wonderful trip hopefully you will find some warm sunshine and a chance for some good chat..
come back to tell us all about it soon...much Love Sybil xxx

Kath Lawrance said...

I have always said that you leave the banner carrying to the 18-2l's because they are the ones with so much passion. However, it's certainly there, lurking when needed , within us all for when we see injustice. Shades of grey are there for those not directly affected. Mea culpa. And you, brave warrior - atta girl.