Finished chemo amd having a break.......a bit scary though.....

Well it's been one hell of a summer! - not the same one for me as most of you have had.

I haven't actually seen any of it although I have felt how warm it has been. I started the 4 rounds of chemo (cisplatin/pemetrexed) at the beginning of June and finished it 2 weeks ago, and now summer has gone. I haven't been out and worn any of my summer clothes, my summer sandals bought in readiness remain unworn.

But.....I have finished chemo, what I can only describe as hell on earth, not something I would wish on anyone. When I say finished I mean finished (for now anyway) no maintenance to follow.

I have been extremely sick as the anti emetics didn't work and have literally felt like I was dying. I think emotionally it has also hit me how poorly I actually am. Because the Iressa (the targeted chemo tablet I had for the last 2 years) worked so well I sort of blocked it out of my mind that I was poorly and had a relatively 'normal' couple of years. This however has bought through all the emotions I probably should have felt when I was first diagnosed. I am seriously ill........I am dying......

I got the scan results this week.....I don't know what I was expecting....what I hoped for was to hear that the chemo had destroyed the cancer and there was no longer any left. I didn't get that.....I was told though that that never would have happened because of the Iressa. The first scan during these 4 cycles of chemo had showed 3mm shrinkage, which they said was good. This time no change, which they also said was good. (I have to believe that they are telling me the truth as it didn't feel like it was good news?!?). I really wanted to ask for a break of a couple of weeks before I started the maintenance chemo as I only really had 2 days that felt 'normal' between the last 2 treatments and I craved a bit more. I also hate the way the steroids have made me look, I have gained 6kg in weight! and have the typical big round 'Moon' face. I don't look like me :(. I was getting very depressed with it.

So what are my options? 1/ I could have the maintenance chemo (pemetrexed on its own) 20 min infusion every 3 weeks- would still have to take the steroids though. Or.......not have anything and have a break from all treatment, after all I have been on permanent chemo for the last 2 1/2 years! 

Apparently the difference in progression free survival is only 1-2 months, which means that it would only be 1-2 months extra time I would get being on the 3 weekly maintenance chemo before the cancer starts growing again, compared to if I just have nothing as at the moment my cancer is classed as 'stable' (That's why the scan was classed as being good, my disease is stable).

So I have opted to have the break! I really want some normality back and I want to lose the steroid 'moon' face! And have some 'normality' for a while :). I am also told that the longer I can survive as 'stable' the better my chances of staying stable are. So If I am still stable at 3 months, the chances of reaching 6 months are high and so on. I will get a CT scan every 3 months or sooner if I feel unwell or become symptomatic.

Afatinib is not a option at the moment as the disease is stable and I need to have progression to get it. Even then it is not set in stone :(. Although it is now licenced, it is not yet approved by NICE. The only option maybe to have to pay for it, that would be thousands that we don't have, but we will cross that bridge if/when we come to it.

There are other options like other chemo's and clinical trails and even try Iressa again or Tarceva.

For now....I am slowly getting over this last chemo and when I get to the day I feel normal again I shall  be making the most of every normal day I have. That includes a much needed holiday. I am keep everything crossed that 'stable' becomes my best friend and that it's going to be a long relationship :)

Positive post while I'm buzzing!

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 :)

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......

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.

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!

It's not always how it looks!

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!

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!