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?

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

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

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!

Tuesday 21 February 2012

living with...: Busy busy busy!

living with...: Busy busy busy!: Just stopped for a breather in my busy schedule! I've now recovered from the flu (which I must have caught on the plane!) and feel like ...

Busy busy busy!

Just stopped for a breather in my busy schedule! 

I've now recovered from the flu (which I must have caught on the plane!) and feel like myself again! In the last week I've organised a sponsored 10 mile walk, organised a charity fancy dress Town and pub crawl and a charity luncheon with the help of some good friends and the Roy Castle lung cancer foundation which is where all the proceeds will go. We also have collections in the local supermarkets, a pub quize and a music festival in the pipeline! I'm hoping to make it all fun for everyone taking part, and make some of the events an annual thing whether I'm here or not.

So far I've raised £146 on my just giving page in just a few days! (thank you to all the people who have sponsored me, I won't let you down). I'm hoping that following all this years events will raise a few thousand and also raise awareness!

I'm still surprised that people don't know that lung cancer kills more people than the other cancers combined and alarmingly more women than breast cancer, ovarian cancer and cervical cancer combined! Yet still women think it's breast cancer that needs our support. The 5 year survival rate for breast cancer is now 95%, when I started my nurse training in 1983 it was 50%! Its come this far because of the campaigners, awareness and the early detection programme (mamography). Its about time Lung Cancer got the same support. At present Lung cancer receives less that 5% of research funding which is unbelievable in light of the facts

I am only one person but together we can try and turn this around and in another 20 years we may get the same results!

Sunday 5 February 2012

living with...: Back from Jamaica!

living with...: Back from Jamaica!: Just got back from a fab 2 weeks in Jamaica! We didn't think we would be able to go again but as time go's on I feel that more is possibl...

Back from Jamaica!

Just got back from a fab 2 weeks in Jamaica! 

We didn't think we would be able to go again but as time go's on I feel that more is possible! We were worried that maybe this time it wouldn't be the same - we have been 4 times before, always to the same place and always had so much fun and always a great holiday. But guess what....it exeeded our expectations. Once again we had such a fab time, we met so many new friends who I know we will keep in touch with and hopefully see again :)). 

I also bought back with me the usual 'gift' of an extra 5lbs in weight! Slight improvement on the usual 7 from previous years lol (I blame it on the fact there were no pancakes for breakfast!).

We were viewing this trip as the last one to Jamaica as there is a whole world to visit but I can guarentee it won't be lol, the only thing that will hold us back will be finances.

It has taken me a couple of days to get over the jet lag and the fact I have come down with a 'cold' from the plane hasn't helped, I have no energy :(. I have such alot to do........I have the charity sky dive to organise, a charity luncheon to plan (got some good raffle prizes already!) and not forgetting the famous Barrington garden parties!


On that note I'm signing off, It's time for Sunday Lunch X

Tuesday 3 January 2012

New Year...here's to you

Happy New Year everyone!

I feel this is going to be a good year! In 2 weeks time, were off to Jamaica, I didn't think we would ever be able to go again but we are and can't wait!

Went to the gym today - first time this year, (I haven't been for about 6 weeks either as no time before christmas) need to get my fitness up to scratch again, plus could do with losing a few pounds before  we go as I always put a few on when were there lol.

There was a photographer there from a regional newspaper, they were doing a story on 'the gym' being a new years resolution. They picked me and my sister to be photographed. When asked if we were there due to a new years resolution I told him my story. He asked for my mobile number and asked if the paper could ring me.

When I got home I had a phone call from one of the reporters, they now want to follow my Lung cancer awareness campaign and feature any fund raising events I organise! He wants me to ring up whenever I have anything planned! How great is that!

So here's to the New Year and all that it may bring!