I have been reading all your questions and blogs for a long time now and not been able to say anything... It took me forever just to fill in my details...I have just been lurking in the background soaking in all the positiveness and information that´s been a really big help to me. I have attended the Penny Brohn Cancer Centre twice, also a Mindfulness Course along with relaxation and meditation. I have just asked my oncologist for help in getting Avastin. I don´t know yet whether or not I will as here in Wales we do not have a "Drug Fund".
I want to thank you all for your inspiration whether I have felt up or down. I will have to have my 3rd line of treatment soon (hopefully not too soon!) dreading it... I so enjoy being with my Grandchildren, friends and family...and you all out there.
My very best wishes to you all
Lindab
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LindaB
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Dear Lynda I've just read your profile. You've been through so much and have been thoroughly unlucky to have suffered negligence in the hospital. No wonder it's taken you a bit of time to post on the site.
We should join for ces to lobby MPs AMs and anyone else who will listen to ensure the treatment for ovarian cancer is as good as the other regions. If not I'll be leaving Wales and will camp on the doorstep of the Royal Marsden.
Yiu're done amazingly well! Don't ever lose heart or hope.
Hi Annie, thanks for taking the time to read my very long profile and replying to me. Yes, we should join forces to lobby MPs. The fact that Wales does not have a "Drug Fund" is disgusting! Let me know when ya going to the Royal Marsden and I shall join you on the doorstep lol!
I won´t lose heart or hope...thanks to people like you.
I am sunning myself now in Spain (hence the late reply) and have to visit the internet cafe...just what I need before I start the chemo for the 3rd time around.
What about we start a blog 'Anyone from Wales?' and ask if they want to put their energies into lobbying for better funding here. Apparently the Welsh Assembly Government made a strategic decision last year not to put the funding into cancer that is in place in England. Perhaps we can get a sub-group together?
What do you think? When you're back home and have time let me know. There's strength in numbers and good that we could make a combined approach.
Good for you having a sunny holiday in Spain before you start the chemotherapy again. You've got your priorities right - and you're escaping what has been horrendous wet weather and gale force winds that have ripped branches from the trees. The sun came out this afternoon and nearly blinded me I was so unused to it. Apparently more rain to come.
I have been slow getting on here, I have not got my grades and stages, I have asked the doc for them in writing, so I can put them in. Welcome here, I find it a lifline, the girls on here are so brave and sensible, thanks Lindab
Hi daisycandoit (love the name). Thanks for your reply and for your warm welcome and just so sorry about the delay in replying...I am in Spain sunning myself whilst I can before my chemo starts yet again...at the internet cafe which is very hot right now...
I will keep you informed when I know what´s happening.
I agree with the sentiments about lobbying! I do this whenever I have to opportunity with my local MP and have worked with another OC charity in the past on it's lobbying project. Unfortunately I was not well and unable to go to the Houses of Parliament to lobby MPs. As you say, the cover, support and services we can get are very different in different parts of the country. Which part of Wales are you in? We go there very often, .... near to Carmarthen, as my hubby comes from near there. Love going there, it's soothing for the soul Unfortunately, I'm a bit out of the loop at the moment, caring for my parents, Mum has just had a spinal op and Dad has memory probs.
Hi wendydee - you will have to give me some tips on lobbying as I would not have a clue! Postcode lottery is a bummer and something should be done about it. I am in Anglesey in North Wales...if I am not mistaken Carmarthen is South Wales.
So sorry about the late reply but after posting I took a flight to Spain... need some sunshine before I start treatment again...at the internet cafe right now and had a lovely surprise to the replies I received.
So sorry to hear about your parents and hope your situation improves somewhat so you can have some time to yourself. My mother had alzhiemers...she did not know me for a long time before she passed away. My thoughts are with you and a really big THANK YOU for taking the time to reply to me.
I shall keep you informed when I get back to the UK when I know when I start chemo and if I can get Avastin...awaiting the Health Board authorisation for this free drug to be issued to me!
My goodness your experience makes me feel humble. I agree about lobbying MP's! I went to a day organised by Target Ovarian Cancer and they are onto this one. I know your part of Wales as my niece and her brother both lived and taught in Llandudno, I spent my teens in Hoylakeband we visited N Wales on Sunday school outings!
Enjoy your grand children and give em hell at clinic appointments!
Hi MargaretJ - I have just typed a reply and then lost it and here I am starting all over again! Good to hear from you - I see it took you 2 years also before completing your profile (glad its not only me lol). I wish I knew where to start with lobbying MPs...I have not got a clue.
So sorry about the late reply but after posting I took a last minute flight to Spain and here I am at the internet cafe surprised at the replies I received..makes me feel really good.
Yes, Llandudno... its a 2 hour round trip for me to go there but I love the shops..only a small M&S but when I feel up to it take off there every now and again. The cinema is also there so long trip just to see a film!
I am missing the grandchildren being out here but will let you know what´s happening when I return and when I know something. I am waiting to hear if I can get Avastin...wish me luck. (will give em hell at the clinic lol!)
Good to hear from you! Good luck with the Avastin! I did a lot of M P lobbying in the 1980's on behalf of teachers. You write to your MP and ask to see them at the house at a particular date and time, then bend his/her ear on the subject of your choice. Write and/or email with your views asking him/her to back your cause; find out when & where they have surgeries and go and tackle them head on.
A two hour round trip would require dedication indeed! I hate to rub it in but I cycled into York today to see the Norwegian film Headhunters! Very gory! However it only took me 20 minutes each way! Tomorrow I shall cycle in to the theatre!
I envy you your sunny Spain though. I am hoping to visit my ex's sister in Arroyo in the autumn. She was widdowed just before Xmas and we have not seen one another since I divorced. My ex is also living in Spain but in Javea so I am unlikely to bump into him. Thank goodness!
He is Welsh but from the South! Maesteg!
Enjoy the sun! I had good news last week - see my Brilliant News & Brilliant News has Knobs on! - I hope that you get your avastin and make progress with remission!
Hi Linda, you've certainly been through the mill (read your profile) .hope things are looking up, I have found this site really helpful and you get great support it lightens the load.Let us know how you get on Love Sue x
Hi Sue...thank you so much for your reply...good to hear from you. After posting I took a last minute flight to sun myself in Spain whilst I can before treatment again.. I am at the internet cafe right now....so sorry for the delay in getting back to you. So surprised I got replies. I will let you know how I get on when I know something myself.
I am sorry about the delay in getting back to you all. OMG what a good response from you all. I am going to have to look into lobbying MP's and look up Target Ovarian Cancer....after I posted on here I took a flight off to sunny Spain and I am enjoying the relaxation whilst I can before my chemo starts again....I am at the internet cafe right now.....just wish I could drink the Sangria!! I will stay in touch with you all. Love Linda
Good to think of you enjoying the sun, Linda! As for lobbying, I trained as an Ovacome ROCC and they gave us some info on lobbying MPs, but I find the simplest way is to google my MP or go on the house of Commons website and send him an email. Fair play, he always replies, even if he sends a stock answer and is not of my political persuasion
I email him about a lot of things, health, education, pensions ... I'm probably a real pain, but if I feel "HEY, THAT'S NOT FAIR!", I think I ought to do something about it. It's good to get these things off my chest too.
However, like Margaret, I did my first lobbying as a teacher. Went up there in '88 and met Kenneth Baker, talking to him about his reforms in the '88 Education Act .....don't get me started on that one though
Anyway, enjoy the sunshine, Linda. Just concentrate on getting yourself well for now, lobbying can come when you feel stronger!
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Unfortunately, I'm a bit out of the loop at the moment, caring for my parents, Mum has just had a spinal op and Dad has memory probs.
thank you
How would you finish this sentence, "Dear Cancer, Thank you for...."
Thank you all, re my Mums passed away
Thank you
Thank you
