HJH's blog

Kate2003

2010-11-08T19:41:19Z

It is with much sadness that I have to inform you that, Kate2003 (Catherine Waldren) lost her battle with cancer on the evening of Nov 5th. I know she had many friends on this site, who will be greatly saddened by her passing. A wonderful lady, a fantastic friend, who will never be forgotten.

I am posting this at the request of her family.

Steffy

The Weeble Principle

2008-07-02T17:09:04Z

Tom and I were just discussing cancer in general, and we came to the conclusion that, It is all a question of being knocked down and having to somehow get up again. Cancer always happens to the nice people it's all about getting knocked down, by treatment, Chemo, Surgery, or Radiotherapy, leaves you knocked out and you have to gather strength and start getting up again. Medical Profession, and their lack of care, compassion, their general lack of decency to cancer patients, when essentially treating a very delicate and personal illness, of which they have little idea of it's effects medically or mentally. They always seem to be able to stun you , and take the wind out of your sails leaving you down on the floor having to recover and get back up again. Maybe that's why everybody says having a strong will and not giving up is helpful fighting cancer, because you need those qualities to pick yourself up, and some some days you really don't want to, and maybe that is why we come on this site for help on the days that you need a hand getting up, or to just put a smile on your face again. Weebles wobble but they don't fall down. what do you think? Steffy & Tomdog x

Refused AGAIN

2008-07-01T08:13:23Z

We went to meet with the PCT and our MP yesterday, what a waste of time. They had already made a decision last Friday, Medical Director of the PCT thought he was doing us a big favour by meeting with us. He also said that he had had an hour telephone conversation with our Oncologist and had corresponded with the consultant, and he doesn't usually do that !!!! Well it's about time he got off his throne and met with the people who are not just case numbers but human beings, maybe he will then see what devastation his decisions make to a families life. The lady chairperson was sympathetic and stated that if it was her husband ill with cancer she would be doing exactly the same as me, to which the Medical Director responded with a half laugh and a raise of his shoulders and said "I wouldn't", almost scoffing at the very idea. I just sat and stared him out, I have never met such an arrogant man. Tom just kept asking what he should do , as all agreed there is no other treatment available to prolong his life, they would not answer him, then the MD stated he should ask his oncologist what he should do, to which Tom replied "the oncologist wants me, to have the drug", so round and round it went. NO they are not going to fund the drug, NO they don't know what else to suggest, and YES they will charge us for any NHS treatment should we fund the drug ourselves, as the rules stand at the moment. I am asking for that today in writing. I am also going to contact the Oncologist on Thursday (she is in Germany at the moment). The Medical Director told us that she had stated that she will be recommending that we do not fund the drugs ourselves, as she had told him we were thinking about it,( don't think that helped), but I need to know why she has said what she did, why have they encouraged us to get funding for the only drug available if she is not prepared for us to fund it ourselves, maybe she thinks the NHS should fund it, or maybe she does not think it is as good as stated, need an answer. We have to have our case looked at by another PCT now, not hopeful. I am so fed up with it all, feel very low at the moment, bit tearful, not my usual fighting self, but I will pick up by next week I am sure. Steffy

Have Your say , So I did

2008-06-29T12:21:51Z

I have just looked at the BBC Homepage and it has under' News 'on the top left of the page an article about, DRUG APPROVAL FOR THE NHS TO SPEED UP. worth a read, talks about NICE and Postcode Lottery and at the end of the article it said, Have You Been Refused a Drug, How will these changes affect you, Have you had to wait for approval of a certain drug. So Tomdog and I emailed them and told them his sorry tale, and we have just had a phonecall to ask if it is alright to pass our details on, of course we said yes, as any media attention to highlight what some cancer sufferers are going through is of benefit to all. Just thought it might be of interest to any other people who are having funding problems, maybe you would also like to add your own comments/weight to the issue on the BBC site.www.bbc.co.uk Steffy & Tomdog

Both sides of the fence

2008-06-04T20:11:58Z

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.