Yesterday I started the next step on this journey.... My IV chemo started. I want to write it all down so I can hopefully sit back and say it was all worth it.
It stated on time, There were 11 infusions altogether if you count the flushes, although most cam out of same bag. Only 2 chemo agents which went through with no problems, the Mannitol was painful though!
To start with they flush you, rehydrate you and give anti sickness meds, the the first chemo - pemetrexed only takes 15 minutes to go through, I managed to do some crochet before this to make sure I didn't dislodge the needle with the wrist action lol, it was fine.
From about midday I started to get tired, I thought it was lack of sleep from the last 2 nights initially but after reading the side effects leaflet from the -emend (anti sickness) I think it could be that as it came across like a wave. I didn't really recover it just got worse, not a bad thing but with all that fluid going in and the Mannitol (diuretic) I kept needing the loo!
It was 16.30 by the time it was all finished, apart from feeling extremely tired not else seemed that bad. I had Steak and salad for tea and even managed a bar of chocolate. Indigestion is also another side effect so rather than my beloved orange juice to drink - as well as the water- we got some strawberry nesquick to make milk shakes. The tiredness did completely take over though and I went to bed about 8.30. I did exactly as I had been told and took a full litre of water to bed, It's difficult when you are so tired to keep drinking then have to keep dragging yourself out of bed to go to the loo!
This morning is another story! I feel like CRAP! Still extremely exhausted, not like me at all. I have the headache from hell, not sure what to take for it?? Not sure about paracetamol as it may mask infection, non steroidal's can cause indigestion and I'm already prone to that, feel nauseated - although not to bad, next anti sickness, emend, isn't due until 9.45. I do have some 'extra' (Domperidone) just in case but will only take if absolutely necessary. Have had a small breakfast, cereals as had to have food with dexamethasone. Didn't taste it, in fact all taste had gone, had coffee, didn't taste it but need it's laxative effect, don't want to get constipated and that's another side effect of something. I can't imagine feeling like this for longer than a few days. I feel ill :(
Sunday, 2 June 2013
Tomorrow I start IV chemo
I have had another roller coaster week this week with mixed emotions.
Stopped taking Iressa a week ago so felt a bit strange having 'no' treatment for a week. Started folic acid tablets following the IM injection and today I started the dexamethasone. 8 mgs so far have been taken, I hope I sleep tonight!
On Thursday we went up to Liverpool as (If you are on Facebook are bound to already know ;) ) I had been nominated for the Roy castle Ambassadors award. And guess what......I WON!
I never win raffles, was useless at sports day so never won anything there or even things on E bay but this is the best 'win' I could ever hope to win. My lovely family were there too and I hope I made them all very proud. Apparently I gave a good speech too although I now cannot remember a word I said!
We stayed up in Liverpool for a few days and had a lovely time. Just today to recover and I had all good intentions of giving the house a 'spring clean' It never happened I was just too tired. I did make a very large Sunday Lunch and ate a family size bar of Cadbury's whole nut as I'm told I will lose all sense of taste afer the IV starts so I wanted to really enjoy something :)
We have some sweets to take with us tomorrow and I will be making sandwiches as the nurse said the ones that have there are not that good..... yes....I am starting IV chemo tomorrow.
I know I need it as I'm coughing a lot more, having a few pain twinges and generally don't feel as good as I did. Going to write this more again now as I want to keep a good record of the things to come and try and write a good account of what it is like and whether it is worth it. At the moment I feel everything is 'worth it' I don't want to die and still have so much to live for and so much I still want to do. Another holiday is one thing and to see the stats for surviving lung cancer increasing is another! I also want to see CRUK jumping on the band wagon and actively supporting Lung Cancer is another, that they will do when the stats 'on paper' show promise I'm sure. It won't be for another 5 years or so as we ate about 5 years behind but when it does remember you heard it here first!
I'm signing off now for tonight but I will hopefully be back tomorrow to tell you how my first day has gone.
Stopped taking Iressa a week ago so felt a bit strange having 'no' treatment for a week. Started folic acid tablets following the IM injection and today I started the dexamethasone. 8 mgs so far have been taken, I hope I sleep tonight!
On Thursday we went up to Liverpool as (If you are on Facebook are bound to already know ;) ) I had been nominated for the Roy castle Ambassadors award. And guess what......I WON!
I never win raffles, was useless at sports day so never won anything there or even things on E bay but this is the best 'win' I could ever hope to win. My lovely family were there too and I hope I made them all very proud. Apparently I gave a good speech too although I now cannot remember a word I said!
We stayed up in Liverpool for a few days and had a lovely time. Just today to recover and I had all good intentions of giving the house a 'spring clean' It never happened I was just too tired. I did make a very large Sunday Lunch and ate a family size bar of Cadbury's whole nut as I'm told I will lose all sense of taste afer the IV starts so I wanted to really enjoy something :)
We have some sweets to take with us tomorrow and I will be making sandwiches as the nurse said the ones that have there are not that good..... yes....I am starting IV chemo tomorrow.
I know I need it as I'm coughing a lot more, having a few pain twinges and generally don't feel as good as I did. Going to write this more again now as I want to keep a good record of the things to come and try and write a good account of what it is like and whether it is worth it. At the moment I feel everything is 'worth it' I don't want to die and still have so much to live for and so much I still want to do. Another holiday is one thing and to see the stats for surviving lung cancer increasing is another! I also want to see CRUK jumping on the band wagon and actively supporting Lung Cancer is another, that they will do when the stats 'on paper' show promise I'm sure. It won't be for another 5 years or so as we ate about 5 years behind but when it does remember you heard it here first!
I'm signing off now for tonight but I will hopefully be back tomorrow to tell you how my first day has gone.
Saturday, 25 May 2013
2 years 2 months on......
2 years 2 months on can you believe it, I can't.
...and is it really 3 months since my last post....I wish time would slow down.
My roller coaster journey is moving forward, literally. I feel I'm at least half way (may be more) up the big incline, I can't get off, sooner than later I will be at the top then.......I don't want to think about that.
My tumour has been growing for months now, we've know about it since November but it started sometime in the 6 months before that. It's been a bit of watch and wait but now I'm becoming symptomatic, coughing, wheezing and my breathing is making some weird noises!
I still don't feel too bad, not lost weight (which is a good thing - please tell that to the things in my wardrobe that are still too small lol) apart from my chest does feel tighter as the day go's on. So the time has come to switch to the dreaded IV chemo.
I have now changed my oncologist (and hospital) only because it will be easier for me to access new unlicensed drugs and drug trials when all other options have gone.
How do I feel about it? It's strange really as I don't want it at all but I don't really have a choice if I want to live..... and I do want to live. I can't imagine saying 'no more, enough is enough' although I'm told that may happen. I can't think of anything that would make me not want to not live.
I have had a relatively 'normal' life since this diagnosis although I suppose it's not 'normal' to anyone who hasn't got this. Monthly hospital appointments. scans that you always worry will show something, plus the side effects of the drugs (although they were nothing I couldn't handle) I mean 'normal' to the extent of it not stopping do most of the things I want to do. I've thrown myself into raising awareness and fund raising for Roy Castle (the only dedicated Lung Cancer charity) and also had the time to do my hobbies (although not all of them as there really isn't enough time in the day), done a bit of travelling and I've love every minute of all of it...I don't want it to change but it's going to :(
...and is it really 3 months since my last post....I wish time would slow down.
My roller coaster journey is moving forward, literally. I feel I'm at least half way (may be more) up the big incline, I can't get off, sooner than later I will be at the top then.......I don't want to think about that.
My tumour has been growing for months now, we've know about it since November but it started sometime in the 6 months before that. It's been a bit of watch and wait but now I'm becoming symptomatic, coughing, wheezing and my breathing is making some weird noises!
I still don't feel too bad, not lost weight (which is a good thing - please tell that to the things in my wardrobe that are still too small lol) apart from my chest does feel tighter as the day go's on. So the time has come to switch to the dreaded IV chemo.
I have now changed my oncologist (and hospital) only because it will be easier for me to access new unlicensed drugs and drug trials when all other options have gone.
How do I feel about it? It's strange really as I don't want it at all but I don't really have a choice if I want to live..... and I do want to live. I can't imagine saying 'no more, enough is enough' although I'm told that may happen. I can't think of anything that would make me not want to not live.
I have had a relatively 'normal' life since this diagnosis although I suppose it's not 'normal' to anyone who hasn't got this. Monthly hospital appointments. scans that you always worry will show something, plus the side effects of the drugs (although they were nothing I couldn't handle) I mean 'normal' to the extent of it not stopping do most of the things I want to do. I've thrown myself into raising awareness and fund raising for Roy Castle (the only dedicated Lung Cancer charity) and also had the time to do my hobbies (although not all of them as there really isn't enough time in the day), done a bit of travelling and I've love every minute of all of it...I don't want it to change but it's going to :(
Tuesday, 5 February 2013
I'm on TV! Thanks BBC
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.
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.
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?
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