This is day 10 0f 21.......

It's 10 days now since I had the first IV chemo. This is the first time I feel anything like up to writing anything. I did try to write the first couple of days and that took me so so long, but since then it just got worse and worse.

No one could even prepare you for this. I couldn't even answer a simple question like 'what is your name?' I am by no means a wimp so if I say it is extremely, extremely, extremely hard then I am probably being generous.

I didn't seem to have the typical side effects that would be expected. Apart from extreme fatigue (and there are no words to say how completely debilitating it is) I had no nausea, I was able to eat albeit it very very small portions, even if is a a biscuit on the hour, small bowl of soup, (we are talking a few tables spoons here) small bowl cereals - half the amount you get in one of those variety boxes - something to try and keep a bit of strength and keep nutrition going in. The difficulty is trying to drink to keep hydrated and that is really important. The cisplatin can be lethal to your kidneys  You need in excess of 3 litres ideally. It is so difficult when you don't feel thirsty, only sips will do as you cannot 'gulp' it down. No other drink tasted of anything, there was no enjoyment what so ever. I couldn't eve taste a cup of coffee until yesterday. And then because you are drinking you need to pee! Just when you are so exhausted you could just fall asleep you have to get up! 

My main problem has been the headache from hell! Nothing would take it away and I mean nothing. I hadn't slept, relaxed or had any 'let up' in 9 days. To start with we thought it may be the anti sickness drugs as they can do that to you, but when it continued 4 days after they stopped, knew it maybe something else. I at this point though couldn't have even told you my name so try explaining to someone else what was happening to me!!!!!

Eventually after trying the typical pain relief, -paracetamol, diclofenac etc called chemo until who said to get GP out. I got prescribed Indomethacin. All this time the headache was going between 5/10 and 10/10. The Indomethacin took it to 5 but sent me psychotic, delirious  rambling and talking utter tosh! Not only that I became barely rousable, So much so Paul had to call for an ambulance at 5am on Wednesday. My blood pressure had also dropped to 80/40. 

It seems I may be particularly sensitive to some of the drugs (not the chemo as such!) the other things they give you to help with the effects and side effects of the chemo. I ended up with morphine for the headaches and diazepam to try and help me settle. 

Yesterday I had  a period with no headache, and when I did have one it was only about a 2-3/10. Today I had a mild one but it has now gone.

Now I am feeling a little more 'normal' (normal with a bad hangover and still exhausted that is)  I realise that this is going to be hell of a lot harder that I/we could ever have imagined. This is day 10 of 21.  I still couldn't go out of the house, my hair needs washing, I have neither the incline or feel the need. I would like to just feel 'normal' no frills, just normal. 

This IS day 10 of 21.....then we have to do it all again......

Day 4 - IV chemo

Finally remembered my password to log bag in and write lol.

This is now day 4 following the first IV chemo. Yesterday was probably the worst day so far, The worse you feel the less you can describe it. I couldn't do a thing yesterday although I did brush my hair for the first time and non came out! Think of your worst ever hangover and x it by about 50, then you may get the idea. Think of that lasting 4 days with no let up.Think of your head being in a vice and a 5/10 headache being bliss! Think also that this is NO guarantee. If I have- like they say a 4-6 out of 10 chance of this working, it also means that the odds are 4-6 out of 10 of it not working. 50%!!!

I also discovered that adding lemon to the jugs of water you have to drink helps it go down and yesterday I reckon I forced down over 3 litres! It didn't really help with the headache but I know I helps overall! 

This is one major learning curve that no one can prepare you for so I am going to share all the things I am finding out. You have to eat, but try to make it very little and hourly/2 hourly. 

Big portions ( and that's probably a very small portion in the ideal world) if very off putting, I have found a piece of toast with smooth peanut butter works well and I can enjoy the taste and it is quite settling on the tummy.. I have had a very small bowl of cereal when I get up with some nice cold milk as that seems to help with the indigestion, can't drink coffee ( just no taste for it, and yes I tried it) so I am having a hot water with lemon in it instead. Lunch has been home made veg soup, with as many veg possible to cram in, only very small bowl though at the mo. Trying to make sure I don't get constipated as that's a side effect of the drugs too, so far so good.

I've also  nibbled on a ginger biscuit and been eating fruit salad chopped right up with a drop of maple syrup on it. I've even been eating a couple of squares of chocolate!  If I don't lose weight on this diet there is something wrong lol. I did however - and I can't believe I did - try and bank a few 1lbs before hand eating big bars of chocolate just in case I really couldn't eat/keep anything down and find I had no 'energy' reserve!

I know there are many people out there going through this and I have to hold my hands up to each and everyone of them, you are all very very brave, If you want to LIVE you have no choice. I cannot understand anyone who would knowingly take their lives for granted and think that 'it won't happen to you' ......it might...... putting yourself at risk is too stupid for me to comprehend. I know there is an 'addiction' but for me my addiction to 'life' and those I love far out way's any other need I have. It's not only you, it's your family watching you have to go through it and feel helpless, I could do that to them if I had a choice.

Day 2

This is now the second morning....It is taking all my energy to write this but I feel it has to be done and I'm not going to sugar coat it.

I cannot explain fully how I feel, It isn't even a case of getting a 'good night's sleep' I feel I've had every single bit of energy zapped out of me, I feel sick, I have the headache from HELL that nothing will take away, I don't know how to get comfortable, I am so tired but can't relax because of the headache. I am supposed to drink plenty but that makes me feel more sick but if I don't my kidneys will suffer the toxic effects of the chemo. Subsequently I need the loo frequently. And yes, just as I start to drop off I have to get up and go. I haven't got much of an appetite but am trying to eat simple things little and often but that just adds to the viscous circle. GRRRRRRRRRRRRRRRRR

I hope all the smokers out there are reading this, it makes me so angry that you all know the risks yet seem to be oblivious??????? I did nothing to get this, shame on you. If you don't care about yourselves please have some consideration for your family that could have to witness this,  IT IS NOT PLEASANT! Ask Paul!

I have never felt so ill in all my life, I have got up to 4 go's at this, after the second one I will have a scan to see what's happening  The results of that and how me and my body are handling things will decide on whether I get the other 2 go's. I have a 4-6 chance out of 10 of this working an d even then that is NOT a cure it's just to buy me some more time.

Those of you who know me know how positive I have been about this so far but I can honestly say at the moment I can fully understand why people would opt to stop treatment. The only thing that is keeping me going and will make me want to go the next round is the chance it will work and the fact this won't last for more than a week.

I hope I can write something more uplifting tomorrow.

IV Chemo - DAY 1

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 :(

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.

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 :(

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.