I have had breast cancer and survived it, I think I suffered more mental anguish than physical , it was caught early and I had no spread, so I just have a very large scar and some scar tissue , so I know I was extremely lucky, it was found when I had a check up on the mobile screening unit. I have had 3 lumps removed from my breast prior to the real deal, and my mother also died of breast cancer.
My husband (Tomdog) has now been diagnosed with Liver Cancer and unless he gets funding for a new drug, his life will be cut short, we have lost the appeal for funding , we have been in the newspapers, radio and television, trying to highlight the case of this ridiculous system of funding which causes postcode lottery. I believe it is morally wrong to withhold a drug that you may benefit from on the grounds of cost, especially if you offer to help with the costs yourself (by selling assets), and they tell you if you do that you are unable to get any further treatment on the NHS. WHY? surely if you can put any money into helping the NHS that has to be a good thing, but not them, it is all or nothing, in a nutshell they will not provide treatment and they will not allow you to buy it either without taking away care that you are already getting. CRAZY.
Having had cancer and now being the partner of someone with cancer, for me it was easier to be the person with the cancer. I find it very frustrating not being able to do more than I do. Feels like I rage at the moon, try to engage people on what is happening to cancer sufferers but it feels like I am talking to empty vessels.
FormerMember
Yes, it is absolutely insane and unjust, both economically and morally to tell NHS patients if they top up their NHS care with any extra treatment then they have to wave any further NHS treatment goodbye. Meanwhile we have been paying taxes for it all our working lives, and if we have saved a bit (instead of frittering it all away) we should have the right to spend it how we want. And how better than trying to save the life of someone we love? This government sucks. Bet they don't rely on NHS treatments for their beloved families!
The government relies upon apathy - and I'm afraid that until we are faced with it, a lot of us don't want to think about unpleasant facts (although Society seems desperate to watch violence, horror and death on tv!) What you have already achieved on behalf of Tomdog and yourself is amazing. I just hope that the BBC East coverage stirs up enough people to get the local authority to change their minds about what, in the grand scheme of things, is a relatively small sum.
Talking to a friend the other day who still knows my ex. He is a solicitor, and we agreed that it is still very much what job you do, your status in Society, as to how you are treated by any public body. He always has people jumping to every command. My current partner just has a little part-time job because of his disability - and believe me I'v really noticed the difference as to how we are both treated. I doubt if the hospital would have brushed me off so insouciantly when they misdiagnosed me if I'd still been with my ex. So, what I'm saying is, we need a VIP or a Celeb (something else Society seems enamoured of) to fight your corner. I have already suggested that our second Get-Together is at No 10 Downing Street.
With very best wishes. Not sure if I have said anything useful - but I just wanted you to know that we are all very angry on here about the way Tomdog has been refused the drug he needs. xxx Penny
Steffy its awful whats going on with Tomdog, how dare they refuse him treatment, it really makes my blood boil!!!!! just wondering how we could get a celeb to Buxton, thats a good idea of Penny's, so we need to get our thinking caps on folks, this could be a new mission for us all xxxxxx
thank you for your support, just feel so tearful and frustrated , not knowing what to do next, keep hitting walls, since last November when this all kicked off, he has had no treatment whatsoever for the tumour, and this drug is out there and it could help him, but they will not even fund him for 2 cycles of treatment to see if it could make a difference,so galling. Postcode Lottery !!!!. All about money, they just hope he will die in the meantime , and stop being a funding problem to them.
Thought that maybe we could google celebs who had been involved with cancer/suffered with cancer.
maybe Kyllie Minogue, or her sister, (that would be an EVENT!), Gloria Hunniford,
do any celebs live near to Buxton? any local tv radio personalities in the area, we need media coverage to raise awareness of the people that are being refused treatment on grounds of cost.
Yes, I have a feeling my consultant will be rather relieved when I die and stop telling people all about their mistaking Scale 4 for Scale 2! It's bloody disgraceful that Barry has had not treatment at all yet. xxx Penny
if Thomas knows anyone? have you been in touch with the macmillian Steffy? they are so very good for acting as advocates, just a thought xxxxxxxxxxxxxxx
