Loocie's Sarcoma Journey Thoughts, Feelings & Snippets.

[SillyLoocie]

Had a very nice time tis past weekend. I wasn't feeling so great because of this darn cold, but it was nice to get away. I actually slept a lot. Certainly didn't have much wine, but I'll be able to do that another time. I am heading into the city tomorrow for my check up, etc. I don't know where I stand with my drugs, so I hope to find that out too.

[SillyLoocie]

​Well, it seems that once the clinical trial is officially over, my access to the KTP-330 will cease. At that time, I will likely be taking a couple of months off & give my body a rest. We will have to discuss what will be next for me in regards to treatment. I guess the reassuring thing has been that throughout this treatment, the CT scans I've had show little change in the development & growth of these damn tumours. I've stopped asking why so much & just find myself visualizing this condition to evaporate, disappear or just get lost..
This is very stressful for me & once again the worrying is in the background. The trial could end in one month or six months,,,,we don't know when, but soon it will not be an option for me. I'm feeling that old feeling of apprehension. It's not easy living with this!

[Hondamanic]

Keep strong and never give up on faith. You will over come this!!! xo

[Lynn49]

​Well, it seems that once the clinical trial is officially over, my access to the KTP-330 will cease. At that time, I will likely be taking a couple of months off & give my body a rest. We will have to discuss what will be next for me in regards to treatment. I guess the reassuring thing has been that throughout this treatment, the CT scans I've had show little change in the development & growth of these damn tumours. I've stopped asking why so much & just find myself visualizing this condition to evaporate, disappear or just get lost..
This is very stressful for me & once again the worrying is in the background. The trial could end in one month or six months,,,,we don't know when, but soon it will not be an option for me. I'm feeling that old feeling of apprehension. It's not easy living with this!

Loocie....I don't even know what to say. You continue to struggle against NF that has a firm hold on you, and now this devastating news regarding that drug not being available to you after the trial period is over!
There are so many trite, cutesy sayings on the web that are supposed to make people who are battling cancer feel better and I admit to trying to find something, anything that could possibly make you feel better, to encourage you to keep fighting, to lift you up, but they all seemed so stupid just now! There just isn't anything that says "I don't know how on earth you do it" or "I can't imagine what you're going through", or "What can I do from here?!".
What I can do is tell you that I'm here (way over here! Woohoo!), that if you ever want to chat, vent, scream in all capital letters, you can.

And since I couldn't find a cutesy thingy to say all that, I'm sending you this doggie to bring a wee smile to you...

[Lee03]

I'm having a hard time posting this after Lynn's post and I'm sure I posted this before, but I really love this.... This is for you Loocie

[Lynn49]

I'm having a hard time posting this after Lynn's post and I'm sure I posted this before, but I really love this.... This is for you Loocie

That's sweet, @Lee03 , and it's encouraging for many situations in life.

The ones that I dismissed yesterday were the, "there's a "can" in cancer"..."having cancer was the best thing that happened to me" (yes, that one is really out there!..."you're on a journey" (journey?! how about a nightmare!)....maybe it's just me, maybe it's because it's so difficult to know the right things to say, but...yep...it's probably just me...

[Skippy]

Sorry my dear friend that this is happening to you.I too wish I knew the "right" words to say,but I want you to know I'm thinking of you and praying for you.

[Natalka]

You continue to be in my prayers and positive thoughts every day, Loocie!

[SillyLoocie]

Today is worldwide NF awareness day. May is NF awareness month. NF is neurofibromatosis, which means tumors of nerve endings (any nerve anywhere in the body). Watch for the blue and green awareness lights on the CN Tower, Niagara Falls and other locations around the province. Watch for people wearing blue and green or with facebook profiles in blue and green. Help us spread the word about NF - share the conversation.

Neurofibromatosis (NF) is a term for three distinct disorders: NF-1, NF-2, and schwannomatosis. NF causes tumours to grow on nerves throughout the body and can lead to blindness, bone abnormalities, deafness, disfigurement, learning disabilities, loss of limbs and excruciating disabling pain. In some instances even cancer. NF-1 affects one in every 3000 people and is more common than cystic fibrosis, Duchenne Muscular Dystrophy and Huntington’s disease combined.

[Lynn49]

Good evening, @SillyLoocie ! I spend some time last week wandering through NF clinical, patient sites and it's a damnable disease for sure!! I can only wish you all the best as you battle against it and offer lots of cyber-hugs throughout the process...

[SillyLoocie]

Well, here we are on a hump day - the middle of the week again. One of the many issues with NF-1 is the unpredictability of how a malignancy is going to behave (or not behave). One of my friends is nearing the end of his struggle with this illness. He has been given 2 weeks to live. He won`t be coming home anymore. The hospital is getting him into a hospice. He has language & intellectual barriers that also make it difficult............but a guy who has his heart in the right place. I am so sad this is happening to him. One of the reasons I must be even more determined to keep the faith.

I`m sure people do not want to hear me go on about this, but because NF is just not getting much in the way of recognition, My job is far from over.

[Lynn49]

[Lynn49]

Although I really like this one!

[Lynn49]

Well, here we are on a hump day - the middle of the week again. One of the many issues with NF-1 is the unpredictability of how a malignancy is going to behave (or not behave). One of my friends is nearing the end of his struggle with this illness. He has been given 2 weeks to live. He won`t be coming home anymore. The hospital is getting him into a hospice. He has language & intellectual barriers that also make it difficult............but a guy who has his heart in the right place. I am so sad this is happening to him. One of the reasons I must be even more determined to keep the faith.

I`m sure people do not want to hear me go on about this, but because NF is just not getting much in the way of recognition, My job is far from over.

[Lee03]

Big hugs Loocie.... xoxo