Not on here often so sorry for taking absolutely ages to respond.
Thanks so much for the kind words - i do find myself ranting quite a bit!!! But then again i was like that before cancer so not much has changed Ha Ha.
i have had more bad news since last post - on 22nd December my christmas present was that i was told i have less than 12 months to live! Great.
tablet chemo for 3 months has not worked and now they are putting me onto Paclitaxel - another strong chemo that will make me lose my hair again - only just got it looking nice too. i have weeping skin mets that are even getting a bit odourous whichis so damn embarrassing. Still working full time to make ends meet and have only just got a MacMillan nurse as no one at the hospital had told me i could have one! 5 months after being diagnosed secondary! She is fab and has told me i have also been entitiled to a benefit that i knew nothing of but cant be backdated so i am rather peeved at that too. Does anyone else find the lack of information given to them is diabolical? i have found far more info on everything on the MacMillan and Breast Cancer care sites than anyone has provided me with.
right now i feel like a guinea pig and that the oncologists just dont know what to do with me so just keep trying this and that with no actual faith in what they are doing.
I hope all of you are doing well and thanks for the support. its just a damn shame that any of us are in this situation.
I have posted stuff under ‘Herceptin not working for me’.
Today was the start of my first dose of Paclitaxol. I will be getting weekly doses. I have been given this as I had great results with Taxotere,they said I should respond well.
I also agree that lack of info is shocking. I got told yest by McMillan CAB that I should have been getting a benefit from April 09 which no-one told me about. I was also told it can’t be back dated. I think its such c**p we are put thro and I get no support from the Breast Cancer nurses, Onc Unit are really good but don’t know the ins and out of benefits which the nurses do.
I do hope you got on ok with chemo again. I really hope your get a result from this, I know 2 women who weren’t given much hope but then after few doses of this their tumours shrunk, 1 girl is on Herceptin for life.
Hey and as you can see from my profile pick I will also be losing my lovely new do, it’s a bit longer now. Oh well I’ll do anything to get better/have hope, it’s only hair.
I wonder if the benefit you are talking about is DLA Disability Living Allowance? If so I urge you to apply for it if you are entitled to it. It has made such a difference to my life. I needed help to complete the form as it is quite lengthy. You can get help with this though. I hope you have applied for a blue badge too. It means that I can use my car much more therefore to the things I need to do without totally knackering myself. If anyone wants more info please PM me.
Wow, that is just such a kick in the teeth…I really feel for you. Have they said whether the 2 that show now may have been hidden behind your large previous tumour?
Sending you lots of hugs and so sorry that you have to go through it all again so soon!
Hi Debracat and Sharon, I am so sorry that things are so difficult for you at the moment. You are much younger than me and I do not think I could cope if my daughters were diagnosed with BC. It just doesn’t make sense why so many young women are being diagnosed. When I was, way back in 1989, I was one of very few younger women dealing with BC. Life is just so unfair. Hugs and lots of support being sent yuur way.
thanks for the support and kind words - its a shit thing to have to say thats its nice to know people really know what we are going through.
Sharon - i too wasnt told about DLA until i finally got a Mac nurse 2 weeks ago(no one told me about Mac nurses either). I also have been entitled for at least 3 months and its disgusting that it cant be back dated. I am sure things would change if whoever it is that gets to make these rules ends up with cancer touching their life one way or another. I only have 10 months left to live - that money could have bought me the holiday of a lifetime before i`m to ill to enjoy it!!! its just sick making isnt it?
How are you finding the Paclitaxel? i had first one on thurs = on weekly treatments too but i didnt have good response to taxotere coas my tumor got bigger through it(even tho i supposedky didnt even have a tumor cos it was meant to have been removed!) so dunno how it`ll go. In bed laid up at the mo trying to summon up the energy to get up and can only be arsed to type one handed so apologies for the mistakes!
hope you all feeling ok and a bit more positive than me at the mo`.
take care
So sorry about your bad news. I just wanted to comment on prognosis as this must be so awful for your to bear. Apparently statistically Oncologists are more often wrong than they are right about prognosis. We used to have a forum member who was given 3 months to live and lived a further 2 1/2 years. I myself was given a sell-by date of 2 years and that was 3 years ago and I still consider myself to be ‘going strong’ now, and I know there are other members like me. Herceptin didn’t work for me either, so I know what a blow that is. I hope that your new treatment works really well, and that there will be further, kinder treatments for you in the future.
