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!
