Why beat around the bush... it's good news. The trial drug is working! I'm still a bit stunned by the news, the good news, the really good news. Delivered by a doctor with a smile on his face, which was lovely to see. And the sun was out. All I needed was for a robin to fly in through the window, perch on my finger and burst into song.
I'm not cured, there is no cure for sarcoma, but I'm now in a holding pattern. Although the cysts have grown it isn't bad because the hard parts within them, the cancerous bits, have softened due to the drug. So the hard bits aren't squashing any of my much more important internal organs. The cysts themselves are full of a liquid substance that is thicker than water and can't be drained off with a syringe, which would seem like the logical solution to the problem. I haven't had to take any hard core pain killers for about two weeks. To my intense relief I also haven't experienced any withdrawal symptoms. I don't know why I am so worried about getting addicted, but I am - even more so the more horror stories I hear about Tramadil.
In celebration we've booked tickets to Australia and leave on Monday. Before we received the news, B had the tickets all lined up and the guy at Trail Finders was willing us on to a positive conclusion. The thought of taking a risk and buying the tickets before we had the go-ahead was too stressful for me to cope with. We haven't been lucky in the risk department so far, but this time it was different.
I'm going to have a break with my family and I'm going to try to feel normal, whatever that feels like. It's been just over a year since this all began and normal feels a long time ago.
I want to ask a question. Quite a few people I know who have had surgery experienced an allergic reaction to the dressing. I know I did. My skin felt like it had prickles embedded in it, and blistered. I have scars from the blistering. Another woman I know had blistering and a terrible rash that led to an infection. Have any of you experienced anything like this post operation? Just curious....
In the meantime, I'm digesting my news.
How do you eat an elephant?
Bite by bite....
8 comments:
That's fantastic! Elaine
Hi Linda,
Great news and have a fantastic trip. In the excitement don't overdo it ! I didn't have an allergic reaction to the dressing but I do find that a good Vitamin E cream from a Health shop is helpful for scar tissue. Love to you both xxx
Thanks, we will have a great trip. Elaine, hopefully see you while we are out there. Faith, thanks for the tip.
xxxx
Linda, I love you. Martz xxxxxxxxxxxx
Goodbye my beautiful big sister. I will miss so much all the love, understanding and laughs you shared around.
Your always adoring little brother.
I'm missing you Lindssss xxxxxx
I started this 'To
Linda' and then felt you were no longer with us, and any post I left should be with any of your many friends and family who may, occasionally, look at this blog. But actually, darling Linda, I can't post without addressing to you directly, because, with, unbelievably, the First Anniversary approaching, makes me realise how ineffectively I am processing the fact that you're no longer here. I miss you so much - one of the truly bright lights of my life, darling Linds. I can't believe you're gone. xxxxx Martz xxxxx
I knew Linda in the early 1990s. We worked together. She was wonderful. Kind and inquiring and feisty and honest. We moved on in our careers and lives. I last saw her in 1999. Quite by chance in Camden Town. I saw her beaming the warmest smile across the road and we spent three hours over two cups of tea.
I googled her name today. Wondered where she was quite out of the blue after 16 years. And found this. She's been gone four years. I have no words for that.
But she was loved. I see that. She was loved and she loved. And that's a huge consolation in such a tragedy of loss. O Linda.
James CP xx
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