Friday 27 December 2013

Thursday 12th May

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

Thursday 26 December 2013

Merry Christmas!

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