Got to write this now for 2 reasons:
1/ I can still remember the 2 'good' days I have just had and ....
2/ I am buzzing fro all the steroids I had pumped into me yesterday so I have the energy at the mo to do it!
......the one thing I don't have though is the ability to spell or even notice things are spelled wrong so you may just have to guess what I mean....I'm blaming that on the steroids as I am trying with 2 fingers at a speed you cannot imagine and I mean FAST!
Yesterday had the LAST of my BIG chemo sessions, the last one ever of that type anyway, will still have to go every three weeks now for maintenance. That is providing this has worked, have scan on Tuesday or Wednesday next (can't remember off top of my head). Told Paul that I may need a wheel chair though to get me there as it is early days after chemo lol.
I then see oncologist the week after to get results and all being well I will start pemetrexed (Alimta) maintenance chemo. I am hoping for a break if a week or so, so that I can feel pretty much like 'me' when I start it than I don't think it will be so hard.
I will do this until it is no longer working or my blood counts are not recovering and I can no longer take it. Then hopefully I will be able to access the new targeted drug Afatinib. Afatibib is not 'approved' by NICE yet although it is in the process. It is however available on compassionate grounds (when all else has failed) through the cancer drugs fund. This is the fund that the current government are trying to abolish! So...we are hoping for one of 2 things, by the time I need it, it will be 'approved' or 2 the cancer drugs fund is still in existence!
I have so much to live for the main thing at the moment is to see my lovely daughter get married, and to be 'giving her away' to her wonderful 'fiancé' who I know will love her and take care of her. <3
I do feel also I need to take some time her to apologise to anyone who feel my recent posts have been a little abrupt/aggressive maybe and not really like me. Please understand that my body has been pumped with 'poison' for want of a better word and lot's of strong steroids! (if you don't know what they do 'google' it Dexamethasone). It's not until the days I feel like me again that I think oops maybe I shouldn't have written that, but at the time it's a different story.
So for the next few weeks something I write may need to be taken with a pinch of salt.....
On the whole I am still positive and I have to hope all I have been through/still going through will be worth it :)
Friday 30 August 2013
Saturday 24 August 2013
This is so damned hard...
I think everything has been getting to me lately.
It's been 2 weeks and 3 days since my last chemo and I still haven't recovered...an I'm doing it all again on Thursday. I still can't taste anything properly -apart from some chocolate- and that doesn't last long before I have this horrible taste in my mouth again.
I am suffering many of the side effects from the steroids, my face is becoming round like the typical 'moon' face, my eyes look so sunken with dark circles, I just don't look like me anymore :( I feel depressed when ever I look in the mirror. My patience had been wearing thin, although I still think I am justified being pee'd off with some things/people. Plus I am gaining weight like no body's business, oh whoa is me.
I feel totally lethargic with no energy to get off the sofa, I have been out today to town with Paul for coffee but with in an hour of pottering around town I had had enough, it's just too much effort.
I am ok doing things on the internet as I can pick it up and put it down at my leisure and to those reading I probably seem perfectly normal, no one can see how much I am suffering from reading text.
I hope I get a bit of a break after the next and last big/strong chemo cycle or I think I will be getting on the plane for my hols in a wheelchair as I doubt if I will have the energy to get on any other way.
I just want a bit of normality......
It's been 2 weeks and 3 days since my last chemo and I still haven't recovered...an I'm doing it all again on Thursday. I still can't taste anything properly -apart from some chocolate- and that doesn't last long before I have this horrible taste in my mouth again.
I am suffering many of the side effects from the steroids, my face is becoming round like the typical 'moon' face, my eyes look so sunken with dark circles, I just don't look like me anymore :( I feel depressed when ever I look in the mirror. My patience had been wearing thin, although I still think I am justified being pee'd off with some things/people. Plus I am gaining weight like no body's business, oh whoa is me.
I feel totally lethargic with no energy to get off the sofa, I have been out today to town with Paul for coffee but with in an hour of pottering around town I had had enough, it's just too much effort.
I am ok doing things on the internet as I can pick it up and put it down at my leisure and to those reading I probably seem perfectly normal, no one can see how much I am suffering from reading text.
I hope I get a bit of a break after the next and last big/strong chemo cycle or I think I will be getting on the plane for my hols in a wheelchair as I doubt if I will have the energy to get on any other way.
I just want a bit of normality......
Sunday 18 August 2013
How much work time and effort does it take to organise a charity event?
Just lately I have been feeling so frustrated, upset and damn right being trodden on from a great height!....
I'm doing my best 'for the greater' good so to speak and not for any selfish reasons what so ever! (Unless you can call giving me a bit of a purpose selfish?)
I don't think anyone knows exactly how much work, time, effort and 'love' for the want of a better word that I put into all of this.
Everything I have done until the Craft fair has been to raise awareness and funds for Roy Castle, and every event has been successful in terms of what it set put to do. I didn't want people just parting with their money but wanted people to 'get something out of it to' and hopefully learn just how important supporting Roy Castle and lung cancer patients is.
for example: The luncheon, the 'Reyolds Revival' and even my home 'coffee shop' for the day were all 'win win'.
So it made sense then for me to look at a Charity Craft Fair! I thought that not only would it continue to raise awareness and funds for Roy Castle but it would also help local crafters who struggle to find somewhere lovely to showcase their 'makes' without it costing a fortune for the privilege before they have even started! With help from some fellow crafters and friends the Contemporary Craft Carnival was born!
The amount of work that go's into it however is that of a full time job and then some! I wanted to learn from other organisers mistakes and make this one that people flocked to be part of. An event where we didn't forget anything and everyone who attended as a stall holder had a great chance of selling their makes and even got some orders before the event. That has happened.
What is frustrating/upsetting me is that I am not doing all this for 'me' I am doing it to help others. I am also doing this whilst suffering from advanced lung cancer with NO chance of a cure and whilst undergoing gruelling chemotherapy. So why is it then that some people can't even do me the courtesy of answering my emails and paying for their tables for the event when asked to? Especially when I know they have read the messages. I don't even mind a message to say why the delay is, but not 'I will pay on.....' and then nothing! I am trying to do this around my chemo, yes to make it a bit easier for me but I don' think that is too much to ask? I am having chemo every 3 weeks for the foreseeable so it is not going to end.
I haven't once let anyone down, If I say I am going to do something I will do it no matter how poorly and crap I am feeling.
I guess maybe people don't realise?? And although I am not one to ask or want sympathy (I certainly don't) and little consideration wouldn't go amiss. So if you didn't realise...you do now.
I would however like to say a BIG thank you to all those who have relied to me and paid for their tables when they said they would and all those who have offered to help.
I'm doing my best 'for the greater' good so to speak and not for any selfish reasons what so ever! (Unless you can call giving me a bit of a purpose selfish?)
I don't think anyone knows exactly how much work, time, effort and 'love' for the want of a better word that I put into all of this.
Everything I have done until the Craft fair has been to raise awareness and funds for Roy Castle, and every event has been successful in terms of what it set put to do. I didn't want people just parting with their money but wanted people to 'get something out of it to' and hopefully learn just how important supporting Roy Castle and lung cancer patients is.
for example: The luncheon, the 'Reyolds Revival' and even my home 'coffee shop' for the day were all 'win win'.
So it made sense then for me to look at a Charity Craft Fair! I thought that not only would it continue to raise awareness and funds for Roy Castle but it would also help local crafters who struggle to find somewhere lovely to showcase their 'makes' without it costing a fortune for the privilege before they have even started! With help from some fellow crafters and friends the Contemporary Craft Carnival was born!
The amount of work that go's into it however is that of a full time job and then some! I wanted to learn from other organisers mistakes and make this one that people flocked to be part of. An event where we didn't forget anything and everyone who attended as a stall holder had a great chance of selling their makes and even got some orders before the event. That has happened.
What is frustrating/upsetting me is that I am not doing all this for 'me' I am doing it to help others. I am also doing this whilst suffering from advanced lung cancer with NO chance of a cure and whilst undergoing gruelling chemotherapy. So why is it then that some people can't even do me the courtesy of answering my emails and paying for their tables for the event when asked to? Especially when I know they have read the messages. I don't even mind a message to say why the delay is, but not 'I will pay on.....' and then nothing! I am trying to do this around my chemo, yes to make it a bit easier for me but I don' think that is too much to ask? I am having chemo every 3 weeks for the foreseeable so it is not going to end.
I haven't once let anyone down, If I say I am going to do something I will do it no matter how poorly and crap I am feeling.
I guess maybe people don't realise?? And although I am not one to ask or want sympathy (I certainly don't) and little consideration wouldn't go amiss. So if you didn't realise...you do now.
I would however like to say a BIG thank you to all those who have relied to me and paid for their tables when they said they would and all those who have offered to help.
Tuesday 13 August 2013
Time for a new post......
So much has happened since my last post it really is time for another.......warts and all I'm afraid!
I seem to have come under some 'criticism' a bit lately from a variety of sources and true to form I take it on the chin and to the most keep shtump, as not to hurt peoples feelings! Well they do it to me without thought so, if I do offend anyone with this then I am sorry. But in the words some of you have said to me 'It's a free world' and If you are allowed to get tings off your chest that bother you, then why aren't I ??
I have always been an extremely hard worker. At the age of 17 I joined the RAF. At 21 I resigned left the RAF to pursue a career in nursing. At the age of 25 I became a single parent (through no real fault of my own) with a 18 month old baby. I worked hard and made a career for myself, buying my own house and sometimes not only working my main full time nursing job but also have 2 other part time jibs on the side to help make ends meet and help us to have holidays and run a car. I never even had a landline phone! I didn't always get it right, but who does, life is a learning curve!
I have always been a very happy person and always strived to help others even though I sometimes I put those closest to me second. I have however always been there for my family and everyone when they have needed me.
In 2006 I had my first bout of Ill health, I was diagnoses with 'skin cancer' the malignant type! I was not a big sun worshiper and the place where it was had never really seem the light of day lol. It was however caught early and surgery was all I needed. I got the all clear in 2009.
If you have been reading this blog you will already know that in 2011 I was diagnosed with advanced, inoperable Lung Cancer, despite having NEVER smoked. I was given literally 3-6 months to live without treatment or 6-12 months with. To date I am still here 2/12 years later. This hasn't been easy, it has been a battle but I have never once felt sorry for my self or complained.
Firstly I had to get over major surgery, It was they only way to get a diagnosis after 15 months of visits to gp etc. Diagnosis was all the surgery did as by the time they 'went in' the main tumour was 11cms and had already spread throughout my lung and into the pleural space, putting me at a stage 4 and giving me a 4% chance overall of seeing 5 years. I was in my 40's!
I decided that I was not going anywhere without a fight, but also realised very early that although I was a fighter there were so many people out there who were not like me. People who were frightened, people who were ashamed because they had smoked and people who could not see the light at the end of the tunnel because of the 'sats' they had read and been told. I set out from that point to do my best to change this and fight for everyone. To put myself out there no matter what people thought of me. And... to try and change the opinions of the small minded. Only then may we see some change in attitudes and some much needed funding into lung cancer research!
Lung cancer remains the BIGGEST cancer killer, killing more people that many of the other cancers combined! It is the BIGGSEST cancer killer in women. Killing more women that breast, ovarian and cervical cancers combined yet it gets less than 5% of research funding!
My battle has been an very hard struggle....I still get blamed for 'smoking' when I first tell anyone I have lung cancer. No wonder many patients keep quite about it! On the whole 25% of people getting lung cancer have NEVER smoked, but that still means that 75% of people who get it DO!
I am against smoking (apology to smokers) I hate it! My cancer could have been and probably was triggered by passive smoking. I do however understand the addiction etc to an extent, however I wouldn't wish this that I am going through on anyone. Hopefully it wont happen to you but the chances that it will are far higher if you continue to smoke than they were for me! Knowing this why do you still do it? Live a day in my shoes.....I can't plan a future anymore, I have to live 3 months at a time between CT scans and looking out for 'symptoms' that says my cancer is growing/spreading!!!!! I have recently lost a good friend because of my views on smoking, but if smokers have the right to justify why they do it, why can't I say why I think they are fools to do so....I just hope this never happens to you and in your minds it never will. No one deserves lung cancer, smoking or not or why increase the risk?
Another thing I have been doing since diagnosis has been throwing myself into raising awareness and funds for lung cancer. Changing attitudes has been the biggest hurdle. Often no one wants to hear, especially the press and media! Only this year (2 years down the line) did I really manage to get the story into the mainstream press, and that because the wife of BBC journalist Robert Pestons' wife died (an also NEVER smoker). We forget however that an even more famous British person died of lung cancer but it is never spoken of! HRH King George V1. Is it because he was a smoker!!!!! No one deserves lung cancer, smoking or not!
My fund and awareness raising seems to be getting somewhere if only locally and somewhat on Facebook! It still seems to get me into some sticky situations though! Complete with criticism from others, this upsets me sometimes but not always. The bigger picture is more important.
I had been doing quite well with treatment until October 2012, when my tumour which had been 'stable' (treated with a targeted chemo therapy tablet drug) started growing again. I started to become 'symptomatic' and it was decided that I would have a CT scan every couple of months to watch the progress. In April 2013 it was decided that I need to change to a gruelling intra-venous chemotherapy (Cisplatin/pemetrexed) I didn't start this however until June 2013 as I changed oncologist and moved over to the Care of New Cross hospital as they are a big cancer centre and can give me a better chance! All during this I have continued to do the fund and awareness raising, despite being very poorly at times. I have never just sat back and put myself first. Which is why I find it difficult to believe I get criticism from what I am trying to do! I have decided that I no longer care about the criticism and that I will continue to do what I am doing. None is for selfish reasons, so my friends you are either with me or just leave me to it. All the events I am organising are 2 fold, raising the much needed awareness and funds for lung cancer but also giving back to the public so everyone gets some enjoyment out of it and maybe learns a little.
So... if you would like to continue to support me I would be very grateful, even it means it is my name in 'light's, to me you are not forgotten. This story needs a 'face' a 'figure head' and I am willing to put myself out there and be just that, for the greater good. Don't forget I have a death sentence hanging over me and I am sure none of you would really like to change places!
I seem to have come under some 'criticism' a bit lately from a variety of sources and true to form I take it on the chin and to the most keep shtump, as not to hurt peoples feelings! Well they do it to me without thought so, if I do offend anyone with this then I am sorry. But in the words some of you have said to me 'It's a free world' and If you are allowed to get tings off your chest that bother you, then why aren't I ??
I have always been an extremely hard worker. At the age of 17 I joined the RAF. At 21 I resigned left the RAF to pursue a career in nursing. At the age of 25 I became a single parent (through no real fault of my own) with a 18 month old baby. I worked hard and made a career for myself, buying my own house and sometimes not only working my main full time nursing job but also have 2 other part time jibs on the side to help make ends meet and help us to have holidays and run a car. I never even had a landline phone! I didn't always get it right, but who does, life is a learning curve!
I have always been a very happy person and always strived to help others even though I sometimes I put those closest to me second. I have however always been there for my family and everyone when they have needed me.
In 2006 I had my first bout of Ill health, I was diagnoses with 'skin cancer' the malignant type! I was not a big sun worshiper and the place where it was had never really seem the light of day lol. It was however caught early and surgery was all I needed. I got the all clear in 2009.
If you have been reading this blog you will already know that in 2011 I was diagnosed with advanced, inoperable Lung Cancer, despite having NEVER smoked. I was given literally 3-6 months to live without treatment or 6-12 months with. To date I am still here 2/12 years later. This hasn't been easy, it has been a battle but I have never once felt sorry for my self or complained.
Firstly I had to get over major surgery, It was they only way to get a diagnosis after 15 months of visits to gp etc. Diagnosis was all the surgery did as by the time they 'went in' the main tumour was 11cms and had already spread throughout my lung and into the pleural space, putting me at a stage 4 and giving me a 4% chance overall of seeing 5 years. I was in my 40's!
I decided that I was not going anywhere without a fight, but also realised very early that although I was a fighter there were so many people out there who were not like me. People who were frightened, people who were ashamed because they had smoked and people who could not see the light at the end of the tunnel because of the 'sats' they had read and been told. I set out from that point to do my best to change this and fight for everyone. To put myself out there no matter what people thought of me. And... to try and change the opinions of the small minded. Only then may we see some change in attitudes and some much needed funding into lung cancer research!
Lung cancer remains the BIGGEST cancer killer, killing more people that many of the other cancers combined! It is the BIGGSEST cancer killer in women. Killing more women that breast, ovarian and cervical cancers combined yet it gets less than 5% of research funding!
My battle has been an very hard struggle....I still get blamed for 'smoking' when I first tell anyone I have lung cancer. No wonder many patients keep quite about it! On the whole 25% of people getting lung cancer have NEVER smoked, but that still means that 75% of people who get it DO!
I am against smoking (apology to smokers) I hate it! My cancer could have been and probably was triggered by passive smoking. I do however understand the addiction etc to an extent, however I wouldn't wish this that I am going through on anyone. Hopefully it wont happen to you but the chances that it will are far higher if you continue to smoke than they were for me! Knowing this why do you still do it? Live a day in my shoes.....I can't plan a future anymore, I have to live 3 months at a time between CT scans and looking out for 'symptoms' that says my cancer is growing/spreading!!!!! I have recently lost a good friend because of my views on smoking, but if smokers have the right to justify why they do it, why can't I say why I think they are fools to do so....I just hope this never happens to you and in your minds it never will. No one deserves lung cancer, smoking or not or why increase the risk?
Another thing I have been doing since diagnosis has been throwing myself into raising awareness and funds for lung cancer. Changing attitudes has been the biggest hurdle. Often no one wants to hear, especially the press and media! Only this year (2 years down the line) did I really manage to get the story into the mainstream press, and that because the wife of BBC journalist Robert Pestons' wife died (an also NEVER smoker). We forget however that an even more famous British person died of lung cancer but it is never spoken of! HRH King George V1. Is it because he was a smoker!!!!! No one deserves lung cancer, smoking or not!
My fund and awareness raising seems to be getting somewhere if only locally and somewhat on Facebook! It still seems to get me into some sticky situations though! Complete with criticism from others, this upsets me sometimes but not always. The bigger picture is more important.
I had been doing quite well with treatment until October 2012, when my tumour which had been 'stable' (treated with a targeted chemo therapy tablet drug) started growing again. I started to become 'symptomatic' and it was decided that I would have a CT scan every couple of months to watch the progress. In April 2013 it was decided that I need to change to a gruelling intra-venous chemotherapy (Cisplatin/pemetrexed) I didn't start this however until June 2013 as I changed oncologist and moved over to the Care of New Cross hospital as they are a big cancer centre and can give me a better chance! All during this I have continued to do the fund and awareness raising, despite being very poorly at times. I have never just sat back and put myself first. Which is why I find it difficult to believe I get criticism from what I am trying to do! I have decided that I no longer care about the criticism and that I will continue to do what I am doing. None is for selfish reasons, so my friends you are either with me or just leave me to it. All the events I am organising are 2 fold, raising the much needed awareness and funds for lung cancer but also giving back to the public so everyone gets some enjoyment out of it and maybe learns a little.
So... if you would like to continue to support me I would be very grateful, even it means it is my name in 'light's, to me you are not forgotten. This story needs a 'face' a 'figure head' and I am willing to put myself out there and be just that, for the greater good. Don't forget I have a death sentence hanging over me and I am sure none of you would really like to change places!
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