After 20 months of endless campaigning to raise awareness for lung Cancer, I have finally got my slot on national TV.
I had written to Daybreak, Lorraine, This Morning etc, each several times and each time being told 'it's not something they are thinking of covering at the moment'. I did, however in November get a slot on Daybreak (via Roy Castle) for Lung Cancer Awareness month only to be cancelled 24 hours before and be replaced with a story on the return of the white stiletto heel!
Then low and behold yesterday I had a call from BBC Midlands Today to see if I would do a story :) It all stems from meeting a lady called Sandra during one of my fund raising events last year. Sandra has a friend who works for BBC Midlands today and told him my story. Today we filmed and on Thursday will be on TV! The story is the one I have been trying to get across since my diagnosis. 1/ Anyone can get lung cancer...There are more younger (under 50) non smoking women getting lung cancer than ever before. 2/ Lung cancer kills more women than breast, ovarian and cervical cancers combined. 3/ lung cancer is the biggest cancer killer yet gets less than 5% of research funding. 4/ It was only in 2007 (only 5 years ago) that they started recognising the different types of lung cancer and treating them accordingly with different drugs! That I am still amazed by. 5/ It had only been in that last couple of years that we have had the biological chemotherapy to treat people with the genetic mutations. I was one of the first to access the drug Iressa on the NHS. 6/ There is hope even when diagnosed at a late stage especially with the availability of new treatments.
Lung cancer is still predominantly caused by smoking however there are increasing numbers of people who have never smoked or who gave up years ago getting lung cancer, this is estimated to be around 60% of all new cases. Although a screening programme is being trialed it is only going to be for older (60 plus) heavy smokers who are deemed to be most at risk. I know they have to start somewhere but it seems to me that the non smokers are being discriminated against. Younger non smokers with Lung Cancer get a really rough deal as it seems that due to not smoking the usual investigations are often not done until many symptoms are present, as no one thinks it could be lung cancer. By the time it is diagnosed it is often at the advanced, inoperable, incurable stage, I am a prime example of this.
In my interview I am trying to show that with research and funding into treatment we can live longer than expected and live relatively normal productive lives. No 'smoking cessation' campaign is going to help people like me!W have never smoked. Nor is screening for early detection, we would not be considered 'at risk' ! The only chance we have is research and funding to help turn this 'death' sentence of a disease into a treatable one. The only way this will happen is to stop the stigma and hope that people see us like every other cancer patient.
Tuesday, 5 February 2013
Thursday, 17 January 2013
The reality of living with Lung Cancer
This post may seem a little different from my usual 'upbeat' posts but I assure you I am still as positive as ever.
Paul and I visited the Penny Brohn Cancer Center last week as I thought I need to put myself in the best place I can to cope with IV chemo and the battle ahead of me. As you can imagine most of the stuff I already know, I just needed reminding how important things like diet and exercise are. The new things we 'learned' were meditation and visualisation although I don't think it's really 'me' if it helps I'll give it a go. One new thing I did learn is that it's not just being positive that the real survivors have in common. The people who do 'best' are people who can display the whole range of emotions.
This is one thing I haven't been doing and I have to say it scared me. I feel 'flat' I don't feel that physical pang of excitement, that physical feeling of fear, I don't feel anything. I'm not depressed and am still hopeful but I feel flat. I don't seem to be able to feel any other way, I think it's a way of blocking out all the emotions I can't bear to feel.
With all this in mind I have decided I must talk about the things I don't want to talk about, get these things off my chest. How do I do this without upsetting the people who love me, the people who want me to be strong and keep fighting? I don't know. I thought perhaps should just write it down so here go's.......
I'm watching ITV's 'This Morning' they are talking about this seasons make up trends and how to be 'fresh faced' and another 'article' on how people are annoyed that lottery tickets are going up in price! I'm reading peoples posts on Facebook some moaning about trivia, some planning this years/ next years holidays some just talking about things in general that make them happy. Me, I can't get excited about 'make up' trends, I'm struggling to cope with chemo induced 'dry/sore' skin. What do I care about lottery ticket price, even if I won the money wouldn't buy me what I want most 'to live'. People don't realise how lucky they are to be oblivious to what the future holds, to be able to make plans months/years ahead, to even be going out to work, to have a life ahead of them! I can't do any of those things, most of all be 'oblivious'. Everyday I am frightened, everyday I feel devastated, everyday I feel angry...why me?? Everyday I still can't believe it. Everyday I have constant reminders that my life is slipping away. Everyday I imagine peoples lives going on without me, I don't want to die. Everyday...I never ends.
Monday, 14 January 2013
Latest news
Hope everyone is having a great start to the New Year.
Since my last post I have had my 6 monthly CT scan and results. This time I was not so lucky. I have disease progression in the form of a new tumour, only small at the mo 2 cms x 3mm. It means the Iressa is no longer working to full capacity, the cancer has found a way to ignore the good work Iressa has been doing. What does this mean for me? Well we don't know how long I have had this new tumour or how long it has taken to grow to it's current size. I will have another CT scan at beginning of February this will give us the information we need. In the meantime I continue taking Iressa as it will still be working on some of the cancer. the theory is 'bad brakes are better than NO brakes'!
So what is the plan? Currently it is IV chemo for 4 -6 months, then move to another TK Inhibitor - Tarceva. There is another drug however, Afatinib, which has been designed to take over from Iressa once it has stopped working fully. It is not yet approved by NICE therefore not available on the NHS. It is however being given to patients at Christies (Manchester) via the cancer drugs fund. I have asked to be referred there so i can see if I can get it. Please keep everything crossed for me. If I can I may still have to go down the IV chemo route first or may (hopefully) be able to switch straight over. It's all if's and but's but I live in hope.
On a lighter side my 'craft's' are proving a huge success, I can't keep up with the demand lol ! Well, I'm still working on 'orders', I also have things in 3 shops, my hairdresser sold out of my Owl key rings in 3 days! I have my Owl and Cat tea cosy's in the Cup Cake shop in town, they sold 8 within 6 working day's! I have loved doing the craft fayre's over the last few months and can't wait to do more. I seriously need to replenish my stock, make more for the shops and put my new idea's into fruition. There just isn't enough hours in the day :))
Monday, 5 November 2012
Lung Cancer Awareness Month, I'm having a rant!
Well it's November again....once again there is very little support on the TV or in the media. I was supposed to be on Daybreak but my slot was pulled the night before and replaced with an article on the 'return of the white stiletto' featuring one of those girls from TOWIE!
Unbelievable....
There was however some mention of lung cancer awareness month with a lady called Alison and Jenny Frost, neither of who'm were wearing their white supporters ribbons as I would have been. There was no mention of the struggle us 'incurable' patients face or the fact that more research and funding for drugs is needed to give us a chance of life. The main thing again - according to the 'expert' they interviewed was how it is related to smoking!!!!! 9/10 cases he said were caused by smoking and that Alison (who didn't smoke) was an exception I am very please for Alison that she was lucky enough to be caught early at stage 1 and didn't need any adjuvent chemo, that is the 'exception'. The majority of us are not that lucky, especially if we are under 50 and have never smoked! We are the ones who are often dismissed as 'worrying about nothing' or 'its all in your head' like a story of a young 36 year old lady that I read today with an array of lung cancer symptoms that no one put together, she is now stage 4 with mets to brain, liver and bones! How could any of us have lung cancer?? Hello....we have...if only someone would have listened!
The expert on Daybreak also said that the rise in women with lung cancer is due to the increase in women taking up smoking in the 60's and 70's????? I'm sorry but even though I was born in the 60's I don't think I was at an age to start smoking! The women who have lung cancer that I have now met (and yes there are quite a few) are in the 30's and 40's some were not even born (or were very young) when this 'smoking habit in women' started! To cap it off, non of us have ever smoked! Explain that one please Mr Expert!
I may upset people with the next bit I'm going to write, but I'm writing it anyway..... We went to a wedding reception on Friday night just gone and to be honest I couldn't believe how many of my friends and other young women/people were 'nipping outside to smoke' throughout the night!
There I am, the one with lung cancer, the one with the 'death sentence' the one who has never smoked. There they are with such little regard to there lives and their health. It makes me angry and sad. They can do something about the risks they face with their health and try and prevent it, but they choose not to. I hope none of them are unlucky enough to find the selves in my position.
The thing is, they would never be in my position if they get lung cancer and carry on smoking, I am doing well because I was fit and healthy and I never smoked. Smokers who get Lung Cancer wouldn't be able to have the same drugs as me (they don't work if you smoke!) and wouldn't have the same chances of live after the fact as me ( treatment doesn't work as well in smokers). Small cell lung cancer (the one most smokers get) is far more aggressive, giving you 'weeks' as opposed to 'months'. If any of my friends who continue to smoke are reading this, please stop...SMOKING KILLS - FACT and its not just lung cancer you are putting yourselves at risk of getting! The choice is yours...would you stand in front of a bullet? I doubt it..so why are you smoking?
Unbelievable....
There was however some mention of lung cancer awareness month with a lady called Alison and Jenny Frost, neither of who'm were wearing their white supporters ribbons as I would have been. There was no mention of the struggle us 'incurable' patients face or the fact that more research and funding for drugs is needed to give us a chance of life. The main thing again - according to the 'expert' they interviewed was how it is related to smoking!!!!! 9/10 cases he said were caused by smoking and that Alison (who didn't smoke) was an exception I am very please for Alison that she was lucky enough to be caught early at stage 1 and didn't need any adjuvent chemo, that is the 'exception'. The majority of us are not that lucky, especially if we are under 50 and have never smoked! We are the ones who are often dismissed as 'worrying about nothing' or 'its all in your head' like a story of a young 36 year old lady that I read today with an array of lung cancer symptoms that no one put together, she is now stage 4 with mets to brain, liver and bones! How could any of us have lung cancer?? Hello....we have...if only someone would have listened!
The expert on Daybreak also said that the rise in women with lung cancer is due to the increase in women taking up smoking in the 60's and 70's????? I'm sorry but even though I was born in the 60's I don't think I was at an age to start smoking! The women who have lung cancer that I have now met (and yes there are quite a few) are in the 30's and 40's some were not even born (or were very young) when this 'smoking habit in women' started! To cap it off, non of us have ever smoked! Explain that one please Mr Expert!
I may upset people with the next bit I'm going to write, but I'm writing it anyway..... We went to a wedding reception on Friday night just gone and to be honest I couldn't believe how many of my friends and other young women/people were 'nipping outside to smoke' throughout the night!
There I am, the one with lung cancer, the one with the 'death sentence' the one who has never smoked. There they are with such little regard to there lives and their health. It makes me angry and sad. They can do something about the risks they face with their health and try and prevent it, but they choose not to. I hope none of them are unlucky enough to find the selves in my position.
The thing is, they would never be in my position if they get lung cancer and carry on smoking, I am doing well because I was fit and healthy and I never smoked. Smokers who get Lung Cancer wouldn't be able to have the same drugs as me (they don't work if you smoke!) and wouldn't have the same chances of live after the fact as me ( treatment doesn't work as well in smokers). Small cell lung cancer (the one most smokers get) is far more aggressive, giving you 'weeks' as opposed to 'months'. If any of my friends who continue to smoke are reading this, please stop...SMOKING KILLS - FACT and its not just lung cancer you are putting yourselves at risk of getting! The choice is yours...would you stand in front of a bullet? I doubt it..so why are you smoking?
Saturday, 21 July 2012
The hello from the USA
Just thought I'd stop by and say hello. just having my morning coffee and checking emails etc and posting photo's to FB.
We're now on the 4th leg of our USA trip and are in San Diego.
We've started out in Wisconsin visiting friends we met in Jamaica in January.It was one of those we'll visit 'one day' things but when you have stage 4 lc who knows when 'one day' will be so....as soon as we got my latest scan results and they were good we booked a flight!. We spend six days there with glorious sunshine (temp 32) mainly in the pool at there house, we were fed 'Amercian' size portions so the weight had piled on! We had the most fantastic hosts and have friends there for life. We went to their neighbour's wedding the second day we were there and have an open invitation to go back whenever we want.
We then headed for Las Vegas to see an old friend I haven't seen since my RAF days some 30 years ago. We sped all of $1 in the casino lol, we're not gamblers. The hotels were amazing though, what an experience! My friend has lived there for 27 years so we were shown all the sights the tourists don't see and visited bars that the locals use. It was a staggering 42 degrees! Too hot to be outside so we spent our time visiting the hotel 'shopping malls' to keep cool. The shops were fantastic as was the food!
We then went to San Fransisco which has become one of my favourite places in the world and definitely want to go back again. July however is one of the coldest months - go figure (I'm turning American!) We were not prepared so the first thing we had to do was buy a couple of hoodies to keep warm lol. Still no rain and better temp than the UK. We did so much walking I think most of the Wisconsin weight gain has now dropped off! We ate 'clam chouder' at pier 39, hired biked and cycled 8 miles across the golden gate bridge, visited Alcatraz and of course there were the shops in Union Square.We've been on the trolly's and cable cars and even walked some of those steep hills you may have seen! I could live here!
Were in San Diego for 6 days before we reach New York (the last leg) so far we've been to 'Old Town' which was like an old 'western' town steeped in history, we've been 'downtown' (had to but comfy walking shoe, as even my flip flops had given me blisters). We've been to the San Diego Zoo, which was fabulous. Were off to 'Fashion Valley' today for a stop of shopping then tomorrow (our last full day) off to Balboa Park which as well as a park has lots of museums. Its also 'gay pride' here this weekend so we think that the park will be lots of fun as there is music and all sorts going on.
Well that's the adventure so far. Don't be envious, go and do it for yourselves! Life is for living!
XX
We're now on the 4th leg of our USA trip and are in San Diego.
We've started out in Wisconsin visiting friends we met in Jamaica in January.It was one of those we'll visit 'one day' things but when you have stage 4 lc who knows when 'one day' will be so....as soon as we got my latest scan results and they were good we booked a flight!. We spend six days there with glorious sunshine (temp 32) mainly in the pool at there house, we were fed 'Amercian' size portions so the weight had piled on! We had the most fantastic hosts and have friends there for life. We went to their neighbour's wedding the second day we were there and have an open invitation to go back whenever we want.
We then headed for Las Vegas to see an old friend I haven't seen since my RAF days some 30 years ago. We sped all of $1 in the casino lol, we're not gamblers. The hotels were amazing though, what an experience! My friend has lived there for 27 years so we were shown all the sights the tourists don't see and visited bars that the locals use. It was a staggering 42 degrees! Too hot to be outside so we spent our time visiting the hotel 'shopping malls' to keep cool. The shops were fantastic as was the food!
We then went to San Fransisco which has become one of my favourite places in the world and definitely want to go back again. July however is one of the coldest months - go figure (I'm turning American!) We were not prepared so the first thing we had to do was buy a couple of hoodies to keep warm lol. Still no rain and better temp than the UK. We did so much walking I think most of the Wisconsin weight gain has now dropped off! We ate 'clam chouder' at pier 39, hired biked and cycled 8 miles across the golden gate bridge, visited Alcatraz and of course there were the shops in Union Square.We've been on the trolly's and cable cars and even walked some of those steep hills you may have seen! I could live here!
Were in San Diego for 6 days before we reach New York (the last leg) so far we've been to 'Old Town' which was like an old 'western' town steeped in history, we've been 'downtown' (had to but comfy walking shoe, as even my flip flops had given me blisters). We've been to the San Diego Zoo, which was fabulous. Were off to 'Fashion Valley' today for a stop of shopping then tomorrow (our last full day) off to Balboa Park which as well as a park has lots of museums. Its also 'gay pride' here this weekend so we think that the park will be lots of fun as there is music and all sorts going on.
Well that's the adventure so far. Don't be envious, go and do it for yourselves! Life is for living!
XX
Friday, 22 June 2012
Its been a while!
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 'owl' the 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 positive 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! That's 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
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 'owl' the 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 positive 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! That's 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
Saturday, 24 March 2012
It's 12 months today.....
12 months ago today (by the date) I was in hospital undergoing surgery to determine what the mass was that had been showing up on my CT scan for the last 5 months. The mass everyone thought was pneumonia.
I woke up to be told it was cancer, adenocarcinoma, and it had been inoperable. The tumour itself was 11cms and was too close to the cardiac vessels and it had already spread. I remember thinking it was a dream (I was full of morphine though). I don't think it was until the next day that it really sunk in. I remember my sisters crying, my husband and my daughter trying so hard to be brave and my mum and dad devastated. My surgeon came to see me and told me not to give up hope as they had sent a specimen to be tested for a genetic mutation and if positive I would be able to have a new form of chemo therapy. He also told me to eat everything I could so I wouldn't lose too much weight and I would have the strength to fight. He said on average people lost about 3 stone!
Initially, I thought I can't fight if I'm not fit, so I did eat. I ate everything that was put in front of me and I lost a grand total of 0 pounds! I had my 50th birthday 3 weeks later, not the 50th celebration I had planned but special all the same, I was alive!
I had the all important oncology appointment that week. The one that would determine what treatment I was to have. I was positive for the EGFR mutation and could have the targeted chemotherapy! I felt a pang of sorrow however when I had to sign the consent form for 'palliative' treatment. I was told that this chemo was just supposed to stop the tumour growing, not to shrink it, but if It didn't grow it wouldn't spread. Within a few weeks I was no longer coughing, I was getting stronger and stronger, the pain meds were being reduced and I was able to do more and more for myself.
So what has happened in the last year? In May I had my first scan, the tumour had shrunk by 20%. In July I did the race for life-walking only but I did it in 50 minutes. We went to Majorca and Spain in the summer. We had 2 fancy dress parties in the garden. I joined the gym, our extension was completed (although I'm still waiting for rails in my walk in wardrobe) I went to Cannes and Monte Carlo. Second scan in October shows tumour is now immeasurable and has collapsed! I bought clothes and shoes I have always wanted (the 'one day I'll have one of those' kind of items). We had a lovely Christmas. We went to Jamaica (again!). I started fund raising for Roy Castle lcf and have been getting stuck into my hobbies!
What haven’t I done? I haven't been down in the dumps or sad. I haven't lost weight! And I haven't lost my hair. I feel blessed for every day I have and don't intend to waste anytime I have feeling down. Overall I've had a fantastic year and hope I will be hear this time next year to write an even longer blog!
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