back on Xeloda and BBC Breakfast

Hi All

Although the Xeloda made me really ill, the poistive side is that my cancer was reduced by 48%, which is great.(not that i could go through that again)

They have started me on half the dose to see how I get on with a view to toppin it up gradually. I just hope that I’m not missing the enzyme and don’t take the same reaction again, because it became at it’s worst after all the tablets were finished so there’s not a whole lot you can do my the, Anyway started them on Tuesday night and still feeling fine at the moment so fingers crossed.

A man is coming to interview me at 5pm tonight regarding co-payment, the Scottish Health Minister is due to make a decision on it in the next couple of weeks so he is up visiting a few cancer patients in Scotland. I’m not sure if they will only put it on the Regional part of the programme or if everybody will be able to see it, I will ask toinght and let you all know.

I don’t particularly like being on the telly but if I don’t fight my corner I can’t expct other people to.

Diane

Hi Diane
glad you are feeling better.
Crazy isnt it ? My feelings are this, we are in a horrid position we are terminally ill taking drugs that make us feel really rotten, rob us of our femininity we look at our family and wonder all the what ifs?
On top of all that we have to fight for drugs that could extend our life. I have been so grateful for the very sensitive media coverage. I am in the South West your are in Scotland Mills is in the North East this is a national problem and we must continue to make our stand. I dont know you but I am proud to know you in cyber space. Keep the prssure up your end I promise I will and I think I know Mills will.
Good luck.

Love Debsxxx

It’s just a shame there aren’t more of us speaking up and making more a fuss about it, united we stand springs to mind. i’ll let you know if will only be covered in Scotland or if it will be UK wide, the man is coming from London to do the interviews so I’m not sure how it will be broadcast.

I really don’t believe the Scottish Government have got any intensions of changing the system, I think they will sit tight and if England put it through in October they will follow suit, which is fine with me as long as it happens.

The fact is how can you put a cost on a life, the NHS are failing us, and then putting obstacles in our way so that we can’t pay for our own treatment why should we have to wait until we have no other options before our oncologist will fight our corner for these drugs it immoral. I wonder what all these MP’s would do if them or their loved ones were put in our position, they would probably pay for private treatment with there fat pay checks, however we don’t have that luxury.

I think it’s a political nightmare no MSP in Scotland want to put their hands up and admit that the NHS is failing cancer patients.

Diane

It was him Debs, I mentioned that I’d never met you but had spoke to you via this site, he said you were a wonderful strong person.

It will be be broadcast on Monday UK wide so hopefully you will be able to see it.

I hate it because you never know from what you have said how it will be edited and how you will come across, but I must admit I have been quite annoyed about it today so I hope how passionate I feel about it comes across.

Graham said he had a list of oncologist he had to speak to and they all pulled out at the last minute, they hve obviously been told to say nothing! Now why doesn’t that surprise me.

Anyway, how are you doing on your Avastin is doing the job, hope you are well.

Diane xx

Diane

Hi Diane,
I look forward to seeing you in my home! He is a lovely guy and working very hard to make a change with our help I am sure it will happen. He edited mine in a very sensitive way and I am certain he will do the same with yours.
Chemo stopped in May as my body could not take much more I have avastin and pamidronate every 3 weeks. I am going tomorrow. I have 2 small new tumours but the others are all behaving and staying shrivelled I will be going back on chem in a few weeks. Not looking forward to it as it made me so ill. Hair is about half an inch hubby says I look like an excentric (spelling) fashion designer.

Love Debsxxx

Hi Diane,
only just logged on maybe you have gone to bed.
I know what you mean, we have been told we have this terrible illness but we dont really feel ill, just not 100%. That changes once treatment starts, we can have so many reactions some minor some major. When it goes wrong it is very scary and we tend to let our guard down which frightens our partners. It suddenly becomes a reality.
I am sorry you have had such a bad time on zeloda after my first few I got more used to it and was able to have a more reasonable time. The worst thing was my feet. Hubby now trained in the art of foot rubbing! Hope it improves for you, it is a powerful drug and with the shrinkage you have already had is really encouraging.
Have a lovely birthday tomorrow and enjoy your time away with family and friends.
We have set our T.V. to record Monday Breakfast BBC it will be good to put a face to the name.

HAPPY BIRTHDAY TO YOU!

Love Debsxxx

Thanks Debbie

I went to bed and good old cry last night and a chat with my hubby Eddie. Sometimes that just all you need eh

Feel better this morning, pulled my socks up and brushed myself down and am ready th face another day.

Love

Diane

xx

Hi Diane
have a lovely day, glad you are feeling better.
Love Debsxxx

your are dead right Debs, I am still continuing the fight. I have not posted lately as I am having trouble with Zometa. It has damaged the nerves in my face and caused severe pain in my ears, face, neck and head. I am having trouble controling the pain as I don’t want to feel knocked out all the time, I need to function. Anyone else had this !!
We need to kepp the pressure on both in the media and with our onc. They need to fight our corner as well. As more ONCs come out in our favour it creates an atmosphere where other DRs and ONC feel they should make a stand, safety in numbers as it were. My feeling is the media want to support us but they need to know who we are, its time to sand up and be counted. Ring your local paper, I am taking part in the Citizen’s Jury on Wdnesday and will report back. The interview I did for Sky News will be broadcast on 9th September, the programme is called What Price Life.

Hi Mills,
maybe we should try and get an appointment with Mr Brown if we could get a few more of us involved? Not just avastin but cancer treatment in general.
Glad to see you back on the threads.

Hi Diane
Hope you enjoyed your birthday.

Love Debsxxx

Hi Mills

I am also hoping to be at the Citizen’s Jury on Wednesday. (though I think our views are different.) Hope to meet you.

Jane

Debs

I was thinking the same maybe as many as possible should try and get together to see Mr Brown because maybe then he would realise just how many are affected by cancer. I saw a piece in the paper about fertility treatment on the NHS so we should be able to get even more treatment on NHS.

Will watch out for you Diane on the TV.

Beli x

look forward to meeting you JaneRa, whether are views are different or not. I agree with Debs, we need to be counted. The government needs to know just how many of us are living with secondary breast cancer and what our needs are. I agree with Belinda, the government are prepared to pay to create life (IVF) at a cost of £25.000 but not prolong it (cancer drugs)
Looking forwad to seeing yo on TV Diane
Colette

Hi Diane,
you did really well and I just hope Wednesday they make the right decision.
I have seen myself and Mills on tv but this time I found it really hard, hubby and I both had tears in our eyes. Maybe his were because I burst into tears! It was really nice to put a face to the name but also really sad because now you are real. Hope you understand what I am trying to say.

Re a two tier system, we who are dying are not responsible for a two tier system it is the government choice to deny life extending drugs to those that NEED them. Somehow they deem this as fair.
Pass me the sick bucket oh yes just remembered we cant afford them.
Rant over!

Diane you looked really good and so did your lovely family.

Love Debsxxx

I know Debbie, I did actually say that it was only because the NHS are failing us that we are in this position and that if they got up to speed with the rest of the world we wouldn’t need to be in this position. Obviously he edited it. I have absolutely no doubt that they are not going to change a thing here, i believe they are going to wait until what happens in England and Wales in october.

Then the Scottish Parliment will backtrack and do the same as England and Wales. If they don’t then i am fortunate in as much as I live about one and half hours from the border and if necessary will go over it to get the treatment I deserve.

My friend sent me an email today regarding an enzyme that can be found in 90% of cancers and that they have managed to understand what they need to do to turn it off and subsequently stop the cells growing. If you haven’t seen it I can forward it to you but you would need to give me your email address.

Diane