Saw oncologist yesterday, always come away feeling depressed :(( I think it's because it makes me think about it, things, life......
I try to pretend the're wronge' and it's not really there. I want to think about having a future, I want to make plans but it just doesn't feel like I can.
I cried today on the phone to a friend, a friend who prays for me every day, there are some really lovely, caring people out there and I thank you all with all my heart for being there for me.xxx
Friday 27 December 2013
Thursday 26 December 2013
Merry Christmas!
This is probably the last post of 2013......hope everyone has had a lovely Christmas! We had another big family Christmas with 13 of us at our house for Christmas lunch. Thank fully I didn't cook, that would be my husband Paul and son-in-law to be Stuart. As you can imagine, lot's of clearing up and washing up to do.
Just reading back my last post I was waiting for the results of my biopsy testing for the anti-PD1 antibody to come back from San Francisco. Sadly the specimen was too 'old' to be tested so last week I had another biopsy taken. (CT guided needle biopsy) they did say I may get the results before Christmas but I didn't, I thought it was a long shot. Never mind I should hear soon.
After all this time of writing this blog, this is the first time I have worked out how up put on a photo! May have to go back and 'edit' all my previous posts now :)
Well back to the 'what's next' bit.......can't remember if I mentioned it but I am off to the BTOG conference at the end of January (British Thoracic Oncology Group) as a 'speaker' for Astra Zeneca (they make the drug Iressa/Gefitinib that I took at the beginning of my journey) I am quite excited about it as I am also going to attend the exhibition and other lectures. It will be a couple of days of valuable learning and information gathering.
I have contacted Boehringer Inglehelm UK to ask if they will be at the conference a I want to talk to someone about accessing Afatinib (it's not approved by NICE yet) should I test negative for the PD1 antibody (that will be my next hope for treatment). They have replied to, to say they will be there and there will be someone for me to talk to!
2014 is a bit of a milestone year for me - it may not make sense why - but to me it does, my bank cards, passport etc all seem to run out in 2014 - I don't want to 'run out' .........my goal has been to 'have to renew everything'! It will also be 3 years in May since I had my first mammogram! A the time the lady who did it said, 'see you in 3 years time' I said 'I hope so.....' as at the time it seemed quite a long shot.
2014 will be a year of lot's of fab things happening. The biggest and most important being Tanya's wedding on 2nd June. It will be here before we know it and it will be lovely, can't wait!
We also have several fund raising events already in the pipeline. 6 so far to be precise! 3 more craft fairs, the annual sponsored walk, the annual charity lunch (although that may be till near Christmas again as the one we have just had was lovely) and a Bavarian night! Not to mention a joint venture that a friend is organising for me and the Stafford half marathon! (I'm not running but I will be there with the awareness stand showing support.
I also have a mission to get into the local secondary schools to try and get through to the kids the dangers of smoking! I did write to the council about it but they reckon they have a programme in place, The ASSIST programme, supposed to be research based and supposed to work. I would question it though as the amount of young people - mostly girls- coming out of school and 'lighting up' it quite alarming! I have however managed to get an appointment with the deputy head at Weston Road Academy in January, he is very keen on working with me on this project!
I have also contacted my MP - Jeremy Lefoy- to try and get him on board with all my campaigns, not heard from him yet though so after Christmas I will be on the case again.
Well that's all from me this year so just want to wish everyone a very Happy New year and hope that 2014 is going to be a good year for everyone xxx
Tuesday 12 November 2013
Where has the year gone?
I really don't know where the time is going, it never went this fast when I was at work although I think what I do now is like a full time job!
It is a year since we went to Candice and Duncan's wedding in Mexico, a year since I started to get tumour progression.... a very difficult but rewarding year indeed.
What has happened in the year then?
More fund raising events: Reynolds Revival, second annual sponsored walk, 2 charity craft fairs! 2 of these events were whilst I was also undergoing chemo!
I had my photo taken by 'Rankin' for the 'Alive exhibition. (He sent me an A3 size photo and the actual exhibition print, plus signed books!) I've been on TV twice talking about lung cancer and been in a Daily Mail article along with BBC reporter Robert Peston. I won the Roy Castle Ambassadors award and I underwent 4 months of the most gruelling chemotherapy, put 10lb in weight on with the steroids and got most of the side effects including a big fat face! 3 more of my friends have died from this horrible disease, I think of them often :( ........ I have made friends with more younger NEVER smokers who like me have advanced incurable disease. I realise though that under the circumstances I am truly blessed.
We had the whole family round for Christmas day ( we are doing it again this year) our one and only holiday this year was back to Mexico this time with my sister and brother in law, and was very much needed!
I have received more knock backs from ITV's programmes (they are never interested in talking about lung cancer) however CRUK wanted me to do a TV report for them about there research programme to help lung cancer. It's still a pittance compared to what they do for other cancers though but it's a start. I have also been asked to speak at the British Thoracic Oncology Conference in Dublin in January!
Health wise, I started coughing again 5 weeks after my chemo finished :( still coughing now. I'm having a Ct scan on Friday and if there is progression (I'm pretty sure there is, after 4 years I know the cough very well) I will have another biopsy, well 2 in fact. 1 will be to see if the tumour has mutated again or developed different mutations, the other to see if I have the PD-1 antibody. If I do I should be able to start the phase 1 anti-PD-1 trial in the new year. There are several Anti-PD-1 trials going on around the world all in different phases and so far the results are looking very promising, giving people another 1-2 years before the disease progresses again. Keep your fingers crossed that I test positive!
It is so important that we keep spreading the word " you don't need to smoke to get lung cancer" that is the only way we will get the support, and research funding we need. There is a stigma because of smoking and no one deserves to get any form of cancer, but.....smoking does remain the biggest risk factor and passive smoking is also deadly!
We need to tackle the treatment of lung cancer in several ways! Early detection does save lives but it is not as simple as that with lung cancer! Who do we screen? At present the plan is to only screen over 60 heavy smokers! The people who complain to the GP of a persistent cough and get sent to see a specialist quickly are smokers! It seems to me the poor younger never smokers are being penalised for NEVER smoking! As most of you know I had been coughing for 17 months before I was diagnosed and even when I collapsed and they saw the 'mass' on my CT scan it was misdiagnosed and took a further 5 months for me to get a diagnosis! If I had a breast lump (which I once did) I was seen by a specialist within 2 weeks!
You can't screen everyone (money wouldn't allow it!) so for people like me our only chance is research into new treatments to prolong our lives. Although it's been a long time coming the research that is being done seems promising (I did so well initially because of Iressa - a biological chemo that treats people with a certain gene mutation) we just have to live long enough for the next new treatment to be licenced and approved by NICE! For this we need your support and your help in raising awareness!
It is a year since we went to Candice and Duncan's wedding in Mexico, a year since I started to get tumour progression.... a very difficult but rewarding year indeed.
What has happened in the year then?
More fund raising events: Reynolds Revival, second annual sponsored walk, 2 charity craft fairs! 2 of these events were whilst I was also undergoing chemo!
I had my photo taken by 'Rankin' for the 'Alive exhibition. (He sent me an A3 size photo and the actual exhibition print, plus signed books!) I've been on TV twice talking about lung cancer and been in a Daily Mail article along with BBC reporter Robert Peston. I won the Roy Castle Ambassadors award and I underwent 4 months of the most gruelling chemotherapy, put 10lb in weight on with the steroids and got most of the side effects including a big fat face! 3 more of my friends have died from this horrible disease, I think of them often :( ........ I have made friends with more younger NEVER smokers who like me have advanced incurable disease. I realise though that under the circumstances I am truly blessed.
We had the whole family round for Christmas day ( we are doing it again this year) our one and only holiday this year was back to Mexico this time with my sister and brother in law, and was very much needed!
I have received more knock backs from ITV's programmes (they are never interested in talking about lung cancer) however CRUK wanted me to do a TV report for them about there research programme to help lung cancer. It's still a pittance compared to what they do for other cancers though but it's a start. I have also been asked to speak at the British Thoracic Oncology Conference in Dublin in January!
Health wise, I started coughing again 5 weeks after my chemo finished :( still coughing now. I'm having a Ct scan on Friday and if there is progression (I'm pretty sure there is, after 4 years I know the cough very well) I will have another biopsy, well 2 in fact. 1 will be to see if the tumour has mutated again or developed different mutations, the other to see if I have the PD-1 antibody. If I do I should be able to start the phase 1 anti-PD-1 trial in the new year. There are several Anti-PD-1 trials going on around the world all in different phases and so far the results are looking very promising, giving people another 1-2 years before the disease progresses again. Keep your fingers crossed that I test positive!
It is so important that we keep spreading the word " you don't need to smoke to get lung cancer" that is the only way we will get the support, and research funding we need. There is a stigma because of smoking and no one deserves to get any form of cancer, but.....smoking does remain the biggest risk factor and passive smoking is also deadly!
We need to tackle the treatment of lung cancer in several ways! Early detection does save lives but it is not as simple as that with lung cancer! Who do we screen? At present the plan is to only screen over 60 heavy smokers! The people who complain to the GP of a persistent cough and get sent to see a specialist quickly are smokers! It seems to me the poor younger never smokers are being penalised for NEVER smoking! As most of you know I had been coughing for 17 months before I was diagnosed and even when I collapsed and they saw the 'mass' on my CT scan it was misdiagnosed and took a further 5 months for me to get a diagnosis! If I had a breast lump (which I once did) I was seen by a specialist within 2 weeks!
You can't screen everyone (money wouldn't allow it!) so for people like me our only chance is research into new treatments to prolong our lives. Although it's been a long time coming the research that is being done seems promising (I did so well initially because of Iressa - a biological chemo that treats people with a certain gene mutation) we just have to live long enough for the next new treatment to be licenced and approved by NICE! For this we need your support and your help in raising awareness!
Friday 13 September 2013
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 :)
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 :)
Friday 30 August 2013
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 :)
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 :)
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!
Saturday 6 July 2013
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!
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!
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!
Saturday 29 June 2013
I am still waiting for the 'light switch' to go off!
Well I am now on my third day post chemo and still feel ok! So much different to last time!
Don't get me wrong, I couldn't get ready and go out but I am able to sit watch TV, do my knitting all without falling asleep at all in the day!
I even got up this morning cleaned the kitchen, did some washing, made breakfast updated my next charity event all over facebook, answered emails and am currently knitting!
I did have a bit of a headache starting so I had 2 paracetamol which didn't really do anything so went straight for the oramorph, just 1 ml that was at 8am, Headache coming back now so just has another 1ml.
I am in no doubt that it will hit me at some point, especially when my blood count starts to drop but for now all these sort of days are a 'Bonus'.
And on the really bright side...my cough seems to have gone! Scan on 17th and am feeling really positive!
Don't get me wrong, I couldn't get ready and go out but I am able to sit watch TV, do my knitting all without falling asleep at all in the day!
I even got up this morning cleaned the kitchen, did some washing, made breakfast updated my next charity event all over facebook, answered emails and am currently knitting!
I did have a bit of a headache starting so I had 2 paracetamol which didn't really do anything so went straight for the oramorph, just 1 ml that was at 8am, Headache coming back now so just has another 1ml.
I am in no doubt that it will hit me at some point, especially when my blood count starts to drop but for now all these sort of days are a 'Bonus'.
And on the really bright side...my cough seems to have gone! Scan on 17th and am feeling really positive!
Wednesday 26 June 2013
First day post second IV chemo....
Well what an eventful day yesterday! I certainly don't do things by half!
Paul took me to the hospital for 8.30, I was one of the first to be called through. Bloods all OK so chemo regimen started with the usual venflon insertion and flush. Then onto saline with potassium and then a litre of pre-hydration, the only difference was the ondasetron (anti emetic) was omitted (I did have the emend though which comes in tablet from) . Sue arrived with more goodies to add to the picnic and Paul went hope with John with orders to make one of his now 'famous' pizza's for tea. Well last time was ok apart from feeling tired and we had steak and chips!
All going swimming well at this point, Next infusion was the first chemo -pemetrexed- followed by another flush and more saline pre-hydration. Managed to do some crochet and we tucked into our picnic, tuna, sweetcorn, mayo roll and cheese and chutney roll, a twix and mini cadbury chocolate fingers, not all eaten at once may I had and not much different to what I had last time. One final cup of coffee before the cisplatin (can't taste if after I've had that for 2 weeks!) so I thoroughly enjoyed it!
It all went down hill from then on......I suddenly couldn't concentrate on any more crochet and started to feel a bit sick. They gave me an anti-sickness tablet (can't think want it was called not stemetil) We had already rung Paul and John to come back for 3 o'clock as we should have finished by then.
Sue being the nurse went and got some paper mache vomit bowls- just in case- Glad she did as then it started.........but .....didn't stop.
They were giving me re-hydration at this point, followed by something containing magnesium. After bringing up about a litre they called the doc who prescribed another anti-emetic - cyclizine- given IV. No more 'up chuck' for about an hour. Paul and John had arrived and we told Sue & John to go home, although Sue did want to stay, we did think after the cyclizine I would be OK.
Oh No, another litre and a bit came up.....doc called again and I was given IV metaclopramine plus more IV fluids as I had been sipping water but couldn't keep it down.
If this didn't work I would have been admitted. By 7pm I hadn't been sick for 40 minutes and I didn't feel that nauseous any more so I decided I would go home, with instructions to ring emergency number and would have to go to EAU. They did say what had happened was highly unusual as they never have anyone who is sick on the day of chemo! (told you I never do anything by halves!) I was advised to stay nil by mouth until the morning as a precaution. I had had extra IV fluids though. (I did suck a couple of ice cubes!)
Got home was tired and had started to develop a headache, it was about 5/10 by then so acting quickly and had 2.5mgs of oramorph! It did the trick. Watched Wimbledon highlights, some shocks there eh? Caught up on Corrie and Emmerdale and fell asleep. Woke up at 10 Paul was also asleep woke him up to take me to bed lol. No more nausea at all!
Decided to further pre-empt things and have a diazepam. Fell asleep pretty much straight away and apart from needing the loo a couple of times (all that IV fluid) had a fab nights sleep! Woke up this morning not feeling too bad at all! Sorted the washing out so Paul can take it to Andrea for ironing.Just had half a piece of toast, got my jug of water, a glass of movicol (to counter act the effects of the morphine) and a nice fruit smoothy to sip. And here I am writing by blog! I am not under any illusion it will stay like this and am sure at some point the fatigue will hit me but this is a far better start than last time, apart from the sickness yesterday :)
Paul took me to the hospital for 8.30, I was one of the first to be called through. Bloods all OK so chemo regimen started with the usual venflon insertion and flush. Then onto saline with potassium and then a litre of pre-hydration, the only difference was the ondasetron (anti emetic) was omitted (I did have the emend though which comes in tablet from) . Sue arrived with more goodies to add to the picnic and Paul went hope with John with orders to make one of his now 'famous' pizza's for tea. Well last time was ok apart from feeling tired and we had steak and chips!
All going swimming well at this point, Next infusion was the first chemo -pemetrexed- followed by another flush and more saline pre-hydration. Managed to do some crochet and we tucked into our picnic, tuna, sweetcorn, mayo roll and cheese and chutney roll, a twix and mini cadbury chocolate fingers, not all eaten at once may I had and not much different to what I had last time. One final cup of coffee before the cisplatin (can't taste if after I've had that for 2 weeks!) so I thoroughly enjoyed it!
It all went down hill from then on......I suddenly couldn't concentrate on any more crochet and started to feel a bit sick. They gave me an anti-sickness tablet (can't think want it was called not stemetil) We had already rung Paul and John to come back for 3 o'clock as we should have finished by then.
Sue being the nurse went and got some paper mache vomit bowls- just in case- Glad she did as then it started.........but .....didn't stop.
They were giving me re-hydration at this point, followed by something containing magnesium. After bringing up about a litre they called the doc who prescribed another anti-emetic - cyclizine- given IV. No more 'up chuck' for about an hour. Paul and John had arrived and we told Sue & John to go home, although Sue did want to stay, we did think after the cyclizine I would be OK.
Oh No, another litre and a bit came up.....doc called again and I was given IV metaclopramine plus more IV fluids as I had been sipping water but couldn't keep it down.
If this didn't work I would have been admitted. By 7pm I hadn't been sick for 40 minutes and I didn't feel that nauseous any more so I decided I would go home, with instructions to ring emergency number and would have to go to EAU. They did say what had happened was highly unusual as they never have anyone who is sick on the day of chemo! (told you I never do anything by halves!) I was advised to stay nil by mouth until the morning as a precaution. I had had extra IV fluids though. (I did suck a couple of ice cubes!)
Got home was tired and had started to develop a headache, it was about 5/10 by then so acting quickly and had 2.5mgs of oramorph! It did the trick. Watched Wimbledon highlights, some shocks there eh? Caught up on Corrie and Emmerdale and fell asleep. Woke up at 10 Paul was also asleep woke him up to take me to bed lol. No more nausea at all!
Decided to further pre-empt things and have a diazepam. Fell asleep pretty much straight away and apart from needing the loo a couple of times (all that IV fluid) had a fab nights sleep! Woke up this morning not feeling too bad at all! Sorted the washing out so Paul can take it to Andrea for ironing.Just had half a piece of toast, got my jug of water, a glass of movicol (to counter act the effects of the morphine) and a nice fruit smoothy to sip. And here I am writing by blog! I am not under any illusion it will stay like this and am sure at some point the fatigue will hit me but this is a far better start than last time, apart from the sickness yesterday :)
Tuesday 25 June 2013
And tomorrow ...we do it again
Can't believe it has come round so quickly!
Tomorrow I have my second lot of the dreaded Cisplatin/Pemetrexed combo only this time I am losing one of the anti sickness drugs!
We have a good idea of what to expect now and we are armed with Morphine and Diazepam!
This last week I have been trying to do as much as I can for the next charity event our 'Contemporary Craft Carnival'. I can't wait, I love the little committee we have and we have all become such good friends. We all have different things to bring to the table and I think it is safe to say I am the leader lol. We have all done a few craft fairs (the others more than me) and we have learned from others mistakes of what to do and what not to do. Plus, we have come up with our own idea's of what will make our's a success!
It is in 3 1/2 weeks time so I will have a week and a bit when I return to the land of the living to get on the the final bit's. That includes making sure I have enough things to sell and last minute advertising! We have all had jobs to do and everything is on track. We've even booked the Christmas one! Exciting times!
I will be having scans after this cycle too so keep everything crossed that it is working. I will be having a break of an extra week or so after this one so I get an extra couple of weeks of feeling ok. I hope its a couple if weeks and a bit as we have tickets to see the 3rd day of the ashes on the 3rd August!
I'm still coughing and that concerns me as it gets worse as the day go's on. I've also been going in and out of AF (Atrial fibrillation, heart arrhythmia) which can be quiet frightening when it's happening. The ventolin has been triggering it so I have been trying not to use it but last night it just happened on it's own and lasted all night! Today I'm back in sinus rhythm!
the other good news is....my hair is still here! Literature said if it's going to fall out it will be at day 21 and we are day 22 today lol.
I'm not going to write again now until I am feeling ok again, just hope it's before 2 weeks. If it isn't so be it! Que sera sera!
Tomorrow I have my second lot of the dreaded Cisplatin/Pemetrexed combo only this time I am losing one of the anti sickness drugs!
We have a good idea of what to expect now and we are armed with Morphine and Diazepam!
This last week I have been trying to do as much as I can for the next charity event our 'Contemporary Craft Carnival'. I can't wait, I love the little committee we have and we have all become such good friends. We all have different things to bring to the table and I think it is safe to say I am the leader lol. We have all done a few craft fairs (the others more than me) and we have learned from others mistakes of what to do and what not to do. Plus, we have come up with our own idea's of what will make our's a success!
It is in 3 1/2 weeks time so I will have a week and a bit when I return to the land of the living to get on the the final bit's. That includes making sure I have enough things to sell and last minute advertising! We have all had jobs to do and everything is on track. We've even booked the Christmas one! Exciting times!
I will be having scans after this cycle too so keep everything crossed that it is working. I will be having a break of an extra week or so after this one so I get an extra couple of weeks of feeling ok. I hope its a couple if weeks and a bit as we have tickets to see the 3rd day of the ashes on the 3rd August!
I'm still coughing and that concerns me as it gets worse as the day go's on. I've also been going in and out of AF (Atrial fibrillation, heart arrhythmia) which can be quiet frightening when it's happening. The ventolin has been triggering it so I have been trying not to use it but last night it just happened on it's own and lasted all night! Today I'm back in sinus rhythm!
the other good news is....my hair is still here! Literature said if it's going to fall out it will be at day 21 and we are day 22 today lol.
I'm not going to write again now until I am feeling ok again, just hope it's before 2 weeks. If it isn't so be it! Que sera sera!
Thursday 20 June 2013
What's the plan?
Had my oncology appointment this week. I have a lovely young oncologist who is super interested in treating lung cancer I am so glad I met him as he fills me with hope.
The headaches I am have been having are unusual however not unheard of. He thinks it's could be the ondansetron (anti sickness med they add to one of the infusions) so we are going to omit it next time. I am quite sensitive to some drugs piriton being one and now we know indomethacin is another!
It won't leave me completely without anti emetic cover as I will still have emend. It's a bit trial an error. I'm also getting a brain scan at the same time as the next CT just to make sure there is nothing else lurking in there! I still have a headache although just mild now and paracetamol seems to now do the trick.
So what's the plan?.....I will have the scans after the next chemo to see if it is working. If it is and I can still tolerate it (that's my body as in blood counts etc) then we will continue with another 2 cycles. I am however having a break of an extra week or so after the second one which is good as I have another charity event - our 'Contemporary Craft Carnival' charity craft fair - to attend! I have put so much work into it I don't want to miss it :) I will then go onto the 'Alimta' maintenance for a bit or for as long as I stay stable.
If it's not working, we can try Afatinib, it's not licenced yet but I can get it via the accelerated access programme. It is known to work very well with people with the EGFR mutation like I have. There is also the option of a clinical trial with a vaccine that is also looking very promising.
Then even better thing is If the chemo is working I still will have these other 2 options further down the line.
He also said that lung cancer in people with the gene mutations is a totally different disease. Most of the advances in treatment are with treating people with the genetic mutations so from being in a very unlucky place I am one of the luckier ones.
There is so much that needs to be done to help everyone with lung cancer and I won't stop anything I am doing until I am not longer able to.
For the rest of this week I am making the most of feeling better, mostly knitting T cosy's and even venturing into town tomorrow with my sister for coffee and cake!
The headaches I am have been having are unusual however not unheard of. He thinks it's could be the ondansetron (anti sickness med they add to one of the infusions) so we are going to omit it next time. I am quite sensitive to some drugs piriton being one and now we know indomethacin is another!
It won't leave me completely without anti emetic cover as I will still have emend. It's a bit trial an error. I'm also getting a brain scan at the same time as the next CT just to make sure there is nothing else lurking in there! I still have a headache although just mild now and paracetamol seems to now do the trick.
So what's the plan?.....I will have the scans after the next chemo to see if it is working. If it is and I can still tolerate it (that's my body as in blood counts etc) then we will continue with another 2 cycles. I am however having a break of an extra week or so after the second one which is good as I have another charity event - our 'Contemporary Craft Carnival' charity craft fair - to attend! I have put so much work into it I don't want to miss it :) I will then go onto the 'Alimta' maintenance for a bit or for as long as I stay stable.
If it's not working, we can try Afatinib, it's not licenced yet but I can get it via the accelerated access programme. It is known to work very well with people with the EGFR mutation like I have. There is also the option of a clinical trial with a vaccine that is also looking very promising.
Then even better thing is If the chemo is working I still will have these other 2 options further down the line.
He also said that lung cancer in people with the gene mutations is a totally different disease. Most of the advances in treatment are with treating people with the genetic mutations so from being in a very unlucky place I am one of the luckier ones.
There is so much that needs to be done to help everyone with lung cancer and I won't stop anything I am doing until I am not longer able to.
For the rest of this week I am making the most of feeling better, mostly knitting T cosy's and even venturing into town tomorrow with my sister for coffee and cake!
Monday 17 June 2013
Exactly 2 weeks
It has been exactly 14 days since they stuck that needle in my hand and I started this new part of the journey.
It has taken exactly that time for me to recover to something resembling 'normality' so today I am writing at a normal speed with more than 2 fingers so will there will probably be lots of errors but that means in some ways I feel back to my normal self :)
Yesterday was the 2nd 'Annual' sponsored walk for Lung Cancer that I have organised. The first one, 10th June 1012 was something I said I wanted to turn into a 'yearly' event (whether I was still here or not) Last year there were about 40 people taking part all wearing our 'yellow' Roy Castle T shirts. We raised around £1,400.
This year, I wasn't quite sure what was going to happen. Because of what has been happening to me I hadn't been promoting it on the run up like I had then previous year - understandably so - but I was determined it was still going ahead. I had been collecting sponsors which mainly came from my old RAF pals who are based all over the place but with the social media we have we all are still in touch. There was also a lovely young lady; Laura Green that until yesterday I hadn't actually met although we had talked and became quite close on Facebook.
Laura is 23, her dad, Al was diagnosed with NSCLC stage 4 about 10 weeks ago. He too had never smoked. Laura saw a comment I gad written on the Roy Castle FB page and contacted me to ask some questions. I wanted to give her and her family some hope as I believe there is hope, I spoke to her dad on the phone and I think he felt reassured. Over the following weeks Al started his chemo and although he hasn't been 'officially' told if it is working or not, he symptoms are less and he is feeling much better. He has just 1 more session to go now.
Laura, wanted to do something to help others like her dad and me and asked me if I was doing the 'dream walk' I told her I had my own walk organised and as she was just 'up the road' in Wolverhampton, why didn't she come and join us on out walk over Cannock Chase.
Well what can I say, she has thrown herself into organising her family and friends to all come and join in. When I turned up to Milford Common yesterday I cried. There were about 100 people, mine and Laura's family and friends all wearing 'Blue' (this years colour) Lung cancer t shirts. Laura's dad Al was there with Dawn his wife and little sister Roberta, Laura's partner Tom and little daughter Gracie so I get to meet them all. Al even walked the whole 5 miles!
My daughter Tanya had baked some fabulous cup cakes with the Roy Castle logo on for everyone to offer a 'donation' for after the walk to go into the charity pot. I have to say, she bakes the best cakes I have ever tasted!..... and she made £70 to add to the pot!
My dad who is 74 did the walk in my place as I still wasn't upto it. What an emotional day, all these people......I think our message is well and truly getting out there. To top it all at the present the total we have raised between us is £3735.13 and there is still sponsor money to come in!
So despite how hard the treatment is I cannot say it isn't worth it!
It has taken exactly that time for me to recover to something resembling 'normality' so today I am writing at a normal speed with more than 2 fingers so will there will probably be lots of errors but that means in some ways I feel back to my normal self :)
Yesterday was the 2nd 'Annual' sponsored walk for Lung Cancer that I have organised. The first one, 10th June 1012 was something I said I wanted to turn into a 'yearly' event (whether I was still here or not) Last year there were about 40 people taking part all wearing our 'yellow' Roy Castle T shirts. We raised around £1,400.
This year, I wasn't quite sure what was going to happen. Because of what has been happening to me I hadn't been promoting it on the run up like I had then previous year - understandably so - but I was determined it was still going ahead. I had been collecting sponsors which mainly came from my old RAF pals who are based all over the place but with the social media we have we all are still in touch. There was also a lovely young lady; Laura Green that until yesterday I hadn't actually met although we had talked and became quite close on Facebook.
Laura is 23, her dad, Al was diagnosed with NSCLC stage 4 about 10 weeks ago. He too had never smoked. Laura saw a comment I gad written on the Roy Castle FB page and contacted me to ask some questions. I wanted to give her and her family some hope as I believe there is hope, I spoke to her dad on the phone and I think he felt reassured. Over the following weeks Al started his chemo and although he hasn't been 'officially' told if it is working or not, he symptoms are less and he is feeling much better. He has just 1 more session to go now.
Laura, wanted to do something to help others like her dad and me and asked me if I was doing the 'dream walk' I told her I had my own walk organised and as she was just 'up the road' in Wolverhampton, why didn't she come and join us on out walk over Cannock Chase.
Well what can I say, she has thrown herself into organising her family and friends to all come and join in. When I turned up to Milford Common yesterday I cried. There were about 100 people, mine and Laura's family and friends all wearing 'Blue' (this years colour) Lung cancer t shirts. Laura's dad Al was there with Dawn his wife and little sister Roberta, Laura's partner Tom and little daughter Gracie so I get to meet them all. Al even walked the whole 5 miles!
My daughter Tanya had baked some fabulous cup cakes with the Roy Castle logo on for everyone to offer a 'donation' for after the walk to go into the charity pot. I have to say, she bakes the best cakes I have ever tasted!..... and she made £70 to add to the pot!
My dad who is 74 did the walk in my place as I still wasn't upto it. What an emotional day, all these people......I think our message is well and truly getting out there. To top it all at the present the total we have raised between us is £3735.13 and there is still sponsor money to come in!
So despite how hard the treatment is I cannot say it isn't worth it!
Friday 14 June 2013
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......
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......
Saturday 8 June 2013
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.
Thursday 6 June 2013
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.
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.
Sunday 2 June 2013
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 :(
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.
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 :))
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