Halfway through second week now of second chemo and I have to say it has been easier this time. That is 'easier' NOT easy!
I have felt all 'out of sorts' frequently just not knowing how to settle and many of the problems encountered last time have kind of been 'dealt' with although any remedy does the bring another problem of it's own that also needs a remedy! Constipation and cystitis being 2 of them. Painful on both counts especially as I now am in need of haemorrhoid cream....ouch!
I haven't been out of the house now for 11 days but it got me thinking about things......It's not always how it looks!
I have had 2 years gadding about (Thanks to Iressa) looking, acting, feeling relatively 'normal'! However 'normal' couldn't have been further from the truth!
There is no getting away from the fact I am 'terminally ill' to coin a phrase and not a phrase I like to use. I don't get the 'sympathy' (not that I want sympathy, I have never wanted that) that other cancer sufferers do that may have lost their hair ( Lost their hair but ARE CURABLE!) I get.....when are you going back to work? Or why haven't you gone back to work?
Well here is the thing........ I (like many) am living with a ticking time bomb! It could go off at any time! I don't have any chance of a cure! I live between scans and x rays and how I feel each day when I wake up!
I would love to 'lose my hair' BUT be cured! I don't have that luxury!
The recent advances in lung cancer treatment mean that people like me can live what little time we have left without suffering lot's of the really side effects of chemo (although my time has come to sample a bit of that too). It doesn't mean we are OK, it is far from from it. It means that we are being given a bit of a chance to do the things we always wanted to do and cram as much is as possible. Things in general people take for granted....the whole...'One day I will do that.....' We don't have that 'one day i'll.... luxury'.
So next time you see me 'out and about' looking 'well' spare a thought of what is really going on....It isn't always how it looks!
Saturday 6 July 2013
Monday 1 July 2013
When did my lung cancer journey begin?
rcWhat a day I had yesterday! There was so much going on.... it started positive and ended the same.
Yesterday just seemed to reiterate to me why I decided to fight, not just for me but for everyone!
It is 5.30 am! Early I know but I have been awake for about an hour but these words keep going round in my mind....where did it all begin??
Yesterday I had a phone call from CRUK, I had left my story on their 'Tell us your story' section of their website. I read a story about another lung cancer patient on their Facebook page a few weeks ago and although over the last couple of years I have been constantly been bombarding their page with 'what are you doing for lung cancer' as it always seems to be the 'poor' relation, the biggest cancer killer with very little funding and progress!
I was very pleasantly surprised to get a phone call call to say my story had 'struck a chord' Not just because I have lung cancer but because I have inoperable, incurable lung cancer yet I am defying the odds! It is showing that at last the small amount of research and advances are paying off and further reiterating that one thing we all want to hear...HOPE!
So it got me thinking....where did it all begin?
I have been trying to think back....I am becoming somewhat an 'expert' ( not in the field of scientists and oncologists) but I do have a medical background so my understanding is greater than most.
In 2008/9 I had a bout of repeated chest infections (read the evidence, can mean early onset, and it probably makes sense when you read on).
That was probably it, but who would ever have known? I have never smoked and chest infections even 4 would not ring alarm bells! Then late in 2010 I developed an irritating cough, not much just an occasional irritation. I was otherwise fit and well. I ignored this for 6 months! I could now kick myself but as you read on, I really don't know what difference it would have made????
June 2010 I visited my GP to say I had had a cough for about 7 months. I was sent for a routine chest X ray and told it was clear. Phew, I though, but....what was causing my cough? Everything was entering my mind? TB? maybe but how? I'd had the jab!
I started to be unable to string a sentence together without having to 'cough out' my words, but I didn't feel 'ill' as such, or maybe I was and was just used to it! The thing was I had become self employed and I had a contract! I was afraid to keep taking time off work in case I lost my income and livelihood! I had ( s other nurse would say, gone over to the 'dark side' as was working as a 'locum' - No shifts, good pay, no weekends, was in control of my life!
My one contract was due to come to an end so I found another down at The John Radcliffe Hospital in Oxford. I started there is begining of November 2010. I loved it, it was a great place to work. The only down side was I had no car so I went down on a Sunday and stayed all week coming home only at the weekend. All this time my cough was getting worse. The first time I came home on a Friday night I didn't get home until 11pm then had to go back again just after lunch on the Sunday! I decided at that point that If I only got a Friday off once a fortnight I would just come home once every 2 weeks.
The first time I decided to do this I said to Paul for him to come to me on these weekends I as staying down and we would 'alternate'. That week my cough had got unbearable, but if I could only get a Friday off once every 2 weeks I would have to go to GP when I had a Friday off. I said to Paul that in 2 weeks when I'm back I need to go to GP. I didn't make it that far!
Paul was coming down on the Saturday morning, I woke about 4.30am with severe pleuritic chest pain, in my lower right back, I couldn't get a breath in! It frightened me and I didn't know what to do, I was on my own!
I though it may settle, but it didn't. I took myself for a shower thinking it may have been muscular and a hot shower may help. It didn't. I couldn't even lift my arm. I got myself dried and dressed and walked in to the hospital, to theatres where I was working. Apparently I looked grey. They got a wheelchair and took me to A&E.
I couldn't even tell the receptionist my name as I couldn't breath wit the pain.
I was taken to 'resus' put on all the usual monitors, Everything within 'normal' limits. apart from I still had pain! ( thinking about it now, no one offered me anything for it!)
The pain was easing after a couple of hours but was still catching when I took a deep breath. I gave my history etc 'do you smoke?' NO NEVER, I replied!
I had another 'routine' chest x ray, told nothing on i! Then, then came to tell me the inflammatory markers in my blood were raised, they said! may have has a PE (pulmonary embolism) No way I said. Anyway, I was send for a VQ scan to check (this was now 5pm). I was told it wasn't that.... BUT..... there was something there! I was sent for a CT scan, which did show a mass!
I was diagnosed with pneumonia and pleurisy! Phew I thought......I was admitted (properly) and given IV antibiotics. Only then did I let Paul know I had been in hospital all day. He came down on Saturday Morning (my orders)
Oxford discharged me with a letter to my GP saying I had pneumonia and pleurisy ! How? No biopsy? No sputum sample? How? I spent the next 3 months trying to convince my GP I hadn't got pneumonia? How could I? When did I get it? I hadn't been ill?
I had LUNG CANCER and no one even though it?
This is NOT an unusual story! In fact is it far TOO common!
The rest is history....just read my blog from the beginning!
I have questioned , analysed and researched. I have been hitting my head against a brick wall often trying to get heard!
It has taken me over 2 years to get this far. sadly many lung cancer patients diagnosed at this stage don't get that long which is why they don't get heard! I am determined that this cannot be for nothing.
My perseverance seems to be paying off! I am lucky in a way that there ARE advances in lung cancer treatment and so far I have been able to access this. I will never be cured but I would be more than happy to live with this as a 'chronic' illness! I am on a daily basis uncertain of my future but I do believe there is hope!
There has to be hope..... Hope is what keeps me going.
The phone call I had from CRUK yesterday makes me hopeful that at last we are going to be hearing about people like me living with this! People who have never smoked, defying the odds, good news stories! In turn this may be able to dispel the myth 'we have done those to ourselves' we HAVEN'T!
In turn, it may get people thinking, raising awareness had always been at the forethought of what I wanted to do, getting away from that 'blame' culture. Then maybe, just maybe we will will get more support, funding and get somewhere near to the survival rates other cancers have!
Thank you for reading....it was a long one!
Yesterday just seemed to reiterate to me why I decided to fight, not just for me but for everyone!
It is 5.30 am! Early I know but I have been awake for about an hour but these words keep going round in my mind....where did it all begin??
Yesterday I had a phone call from CRUK, I had left my story on their 'Tell us your story' section of their website. I read a story about another lung cancer patient on their Facebook page a few weeks ago and although over the last couple of years I have been constantly been bombarding their page with 'what are you doing for lung cancer' as it always seems to be the 'poor' relation, the biggest cancer killer with very little funding and progress!
I was very pleasantly surprised to get a phone call call to say my story had 'struck a chord' Not just because I have lung cancer but because I have inoperable, incurable lung cancer yet I am defying the odds! It is showing that at last the small amount of research and advances are paying off and further reiterating that one thing we all want to hear...HOPE!
So it got me thinking....where did it all begin?
I have been trying to think back....I am becoming somewhat an 'expert' ( not in the field of scientists and oncologists) but I do have a medical background so my understanding is greater than most.
In 2008/9 I had a bout of repeated chest infections (read the evidence, can mean early onset, and it probably makes sense when you read on).
That was probably it, but who would ever have known? I have never smoked and chest infections even 4 would not ring alarm bells! Then late in 2010 I developed an irritating cough, not much just an occasional irritation. I was otherwise fit and well. I ignored this for 6 months! I could now kick myself but as you read on, I really don't know what difference it would have made????
June 2010 I visited my GP to say I had had a cough for about 7 months. I was sent for a routine chest X ray and told it was clear. Phew, I though, but....what was causing my cough? Everything was entering my mind? TB? maybe but how? I'd had the jab!
I started to be unable to string a sentence together without having to 'cough out' my words, but I didn't feel 'ill' as such, or maybe I was and was just used to it! The thing was I had become self employed and I had a contract! I was afraid to keep taking time off work in case I lost my income and livelihood! I had ( s other nurse would say, gone over to the 'dark side' as was working as a 'locum' - No shifts, good pay, no weekends, was in control of my life!
My one contract was due to come to an end so I found another down at The John Radcliffe Hospital in Oxford. I started there is begining of November 2010. I loved it, it was a great place to work. The only down side was I had no car so I went down on a Sunday and stayed all week coming home only at the weekend. All this time my cough was getting worse. The first time I came home on a Friday night I didn't get home until 11pm then had to go back again just after lunch on the Sunday! I decided at that point that If I only got a Friday off once a fortnight I would just come home once every 2 weeks.
The first time I decided to do this I said to Paul for him to come to me on these weekends I as staying down and we would 'alternate'. That week my cough had got unbearable, but if I could only get a Friday off once every 2 weeks I would have to go to GP when I had a Friday off. I said to Paul that in 2 weeks when I'm back I need to go to GP. I didn't make it that far!
Paul was coming down on the Saturday morning, I woke about 4.30am with severe pleuritic chest pain, in my lower right back, I couldn't get a breath in! It frightened me and I didn't know what to do, I was on my own!
I though it may settle, but it didn't. I took myself for a shower thinking it may have been muscular and a hot shower may help. It didn't. I couldn't even lift my arm. I got myself dried and dressed and walked in to the hospital, to theatres where I was working. Apparently I looked grey. They got a wheelchair and took me to A&E.
I couldn't even tell the receptionist my name as I couldn't breath wit the pain.
I was taken to 'resus' put on all the usual monitors, Everything within 'normal' limits. apart from I still had pain! ( thinking about it now, no one offered me anything for it!)
The pain was easing after a couple of hours but was still catching when I took a deep breath. I gave my history etc 'do you smoke?' NO NEVER, I replied!
I had another 'routine' chest x ray, told nothing on i! Then, then came to tell me the inflammatory markers in my blood were raised, they said! may have has a PE (pulmonary embolism) No way I said. Anyway, I was send for a VQ scan to check (this was now 5pm). I was told it wasn't that.... BUT..... there was something there! I was sent for a CT scan, which did show a mass!
I was diagnosed with pneumonia and pleurisy! Phew I thought......I was admitted (properly) and given IV antibiotics. Only then did I let Paul know I had been in hospital all day. He came down on Saturday Morning (my orders)
Oxford discharged me with a letter to my GP saying I had pneumonia and pleurisy ! How? No biopsy? No sputum sample? How? I spent the next 3 months trying to convince my GP I hadn't got pneumonia? How could I? When did I get it? I hadn't been ill?
I had LUNG CANCER and no one even though it?
This is NOT an unusual story! In fact is it far TOO common!
The rest is history....just read my blog from the beginning!
I have questioned , analysed and researched. I have been hitting my head against a brick wall often trying to get heard!
It has taken me over 2 years to get this far. sadly many lung cancer patients diagnosed at this stage don't get that long which is why they don't get heard! I am determined that this cannot be for nothing.
My perseverance seems to be paying off! I am lucky in a way that there ARE advances in lung cancer treatment and so far I have been able to access this. I will never be cured but I would be more than happy to live with this as a 'chronic' illness! I am on a daily basis uncertain of my future but I do believe there is hope!
There has to be hope..... Hope is what keeps me going.
The phone call I had from CRUK yesterday makes me hopeful that at last we are going to be hearing about people like me living with this! People who have never smoked, defying the odds, good news stories! In turn this may be able to dispel the myth 'we have done those to ourselves' we HAVEN'T!
In turn, it may get people thinking, raising awareness had always been at the forethought of what I wanted to do, getting away from that 'blame' culture. Then maybe, just maybe we will will get more support, funding and get somewhere near to the survival rates other cancers have!
Thank you for reading....it was a long one!
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