Its been a while!: Well its been a... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Its been a while!

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Well its been a while since my last post, probably as i'm too busy living life to the full!

Since my last post we have had 3 charity events raising around £2000 so far for Roy Castle lcf. I've been inundated with requests to make my knitted 'owl' tea cosy's and my clothing sales have led me to dedicating a bedroom to a 'studio' for clothes. Were off to America to visit friends in various desinations and weve had the first party of the year! Phew! I don't seem to stop and time is flying by.

I've just had the results of my latest CT scan which shows no change from the previous one. That my friends means I'm stable, the tumour is still collasped, there are no visible mets and I have another 6 months of carefree living to do.

Since this happened to me I have learned so much, initially the shock of the diagnosis is terrible. Not just hearing the 'C' word but being told that it was stage 4 and couldn't be surgically removed and that my only hope was chemo. Being a nurse I knew exactly what that meant....but....what I didn't know was there are new treatments that I'd never really heard of that were now available. These treatments are based on gene mutations. Luckily for me I am one of only 10% of people to have one. Hence for the last 15 months I have been taking a drug called 'Iressa'. Anyone who has seen me will know that I don't look, act or feel ill. I do feel different, that could be from the surgery as I do now have nerve damage but on the whole I a pretty much as normal as I can be. There are some side effects from the drug, most dissapreared after 6 months or so the few I still have and now become normal to me so I no longer notice them. For me this drug is a wonder drug and incidentaly its the only drug I take!

I have also learned that being postive and keeping active is one of the most important things that anyone in my position can be. Everyone that does so seems to live longer, some years and years and years. I have also learned that I just need to survive long enough for the next new treatment to become available. At some point my current treatment may stop working as my body will become resistant to it. Even as we speak scientists are developing other drugs that work with it to continue its potency, these drugs are being trialled now with great results. I am rapidly becoming a sort of 'expert' in the field of lung cancer and seem to be answering blog enquiries on lung cancers forums everyday.

This whole experience has been life changing for me and not in a bad way. I'm getting to do all the things I always wanted to do and more! Without trying it fir it all in around work! Thats my hobbies, lunching with friends, shopping, fashion (I love clothes) and I am doing some good with all the charity work and support to other lung cancer victims.

Life is too short people, don't leave things you want to do for 'one day' for some that day never comes. For me, I'll have no regrets! xxx

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Billculbard profile image
Billculbard

Hi Lyn

If your story up till now doesn't inspire and encourage people, I don't know what will! None of us are here for ever, and have to make the best of the time we've got. The way you're going, you'll need to apply for an extra life, to fit it all in. :)

Glad to hear of your latest CT scan result. Hope you have a great holiday because you must be ready for it by now.

Love Bill x

Thank you, :) my application is already written out Bill! lol I think we'll have a great time although we'll probably need another holiday after that.

Love lyn x

sandra123 profile image
sandra123

Hi Lyn

What a marvellous inspirator you are; you certainly give hope to all. Thank you.

I am new to this site and am certainly pleased to have discovered it.

My husband, Brian, was diagnosed with stage 4 adenocarcinoma at the end of April this year. It was discovered via pain in his hip which we thought was due to wear and tear. The consultant admitted him to hospital straight away as he would never have walked again if he had broken it.

He had 2 'pins' put in and has radiotherapy to help it to heal.

He has secondary in his bones, liver and left adrenal.

He has also had the first lot of bone infusion and a test for the gene mutation.

We are keeping everything crossed and praying that he is amongst the lucky 10% and hopefully should know on Monday, 2nd July.(They had to send another sample of tissue as the first test went 'wrong')

They thought at first that he would not be well enough to have chemo if the test was negative but, thankfully, have said that he is.

Thank you for reading this. Have a lovely weekend everyone.

Hi Sandra,

I am so pleased you have found this site, there is hope please believe it.

I hope you get the results you need, but even if you don't, don't give up there is awlays hope.

Hope you are having a lovely weekend too

lyn xx

suesal123 profile image
suesal123

I've just been told that I have NSCLC Stage 3 and that I am going to be receiving Iressa which you have been on. Reading your comments gives me great hope for the future. Thanks for helping at a very difficult and uncertain time.

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