Breast Cancer Now Forum

Good Idea Thumbie I have yet to tell my dx to many people because of the I first reactions I had. The pink campaign seems to have had the effect that if you are dx secondary it must be your own fault. Questions such has when did you last have your mammogram were fired rapidly . Although I did not like it I can understand them because of the real truth about this dx is not out there. I was just has ignorant the hardest part for me was getting over a straight secondary dx . I like them assumed it must be my own fault. I know now because of wonderful information on these boards and my own research tht this is an awful secret kept hidden well by the pink money machine. At first I did not have the energy but my old fighting self is back. I will keep saying it BCC you are not representing the large proportion of women with this dx and those who will be dx in the future. ... View more

Hi Lemon Grove I totally agree with everything you say about secondary people being given so much grief. We have to fight to be noticed once we are dx. Please BCC listen to those who are in the know to the brave people who are fighting this awful illness. I repeat what Lemon grove has said body image day is an insult. Please use your power and our money more wisely. We may be ill and sometimes frail but that does not mean that we should stand for the second class treatment that our government and quite frankly your organisation is dishing out. Mara ... View more

Hi vicki & lucinda Just to let you know my breast cancer nurse did call back. We had a long chat about the woeful lack of support for secondary ladies even more so o those dx straight out like myself. i think Vicki is right we need an advocate I am not sure how we go about this. But my first step at the moment is to write to myhospital trust not to criticise my care team because thy are brilliant and are well aware tht there is little provision ,but to labour the fact of the lack of secondarycare experience and support medically and mentally is just not there. Maybe if we all take this stand and also remind BCC how important this issue is. My hospital alone has a least 100 secondary patients 10 percent dx straight away. Mara ... View more

Hi Belinda just about to read The summer book. Will let you know how I get on with it. i like to read but I use films to escape . I love to go the cinema on my own ( i have always used this has a stress buster now its needed more than ever)in th after noon and so far I have not fallen asleep. ( Russel crowe and supermn helped) If I am to tired i watch soppy movies at home. Just watchedareal tear jerker about a border collie called Duke I had to check the end first to make sure it had a happy Ending. That's the great thing about reading favourite books no surprise sad endings. my gormless shopping today is a really healthy three bags of watercress and three dozen eggs my online order arrived must remember not to shop late a night. Mara ... View more

Hi Maggie and all members of the gormless club please dont't get upset you are not alone. Too many gormless incidents for me to mention at the moment. I also love the feel of books I like the idea of a squidgy paperback . I just wanted to say hello to everyone I am relatively knew to all this but some fun would be really helpful. Scottish lass I am a reader a would love to exchange and discuss my books I am reading. thats if I can find them. I have habit at the moment Of leaving them somewhere usually in the garden fortunately not too much rain at the moment Lol. For some reason I never loose my kindle. I hope we can carry on withthe gormless thread. It makes us all feel so much better knowing we are not alone. Mara ps will report on my gormless shopping outings later ... View more

Hi Abbie and all you great ladies I was also diagnoised in February. A heck of a shock. I have not had chemo yet, I feel that it is to come one day in the future the far future I hope. After my lumpectomy and aixill they found during scan that I had hot spots in the bones hence the double whammy. I have not had anyn biopsies on the hot spots. I am on letrozole and exegeva I just feel the less people know the more normal my life can be for now. A couple of good friends plus hubby know and they are such wonderful support . Chatting on here really helps to there is somuch help and comfort to be found amongst the ladies here. Thanks for the warning Mrs Blue about privacy. Take care everyone Mara ... View more

Thanks flinty an interesting read I just read something else along these lines on a us site. always open to new ideas health or otherwise. mara ... View more

Thanks elinda I finally got my answers but from the onc still no phonecall from the BCN. The onc department are still insisting that they should be there for me. I am lucky I have a good network of friends and awonderful family. I am concious that many others are not so lucky and need the support? Thanks everyone at least I know it's not personal . Mara ... View more

Hi lemon grove Just wanted to say well put as usual. I am also aware of how well these boards and BCC support us. That does not make me any less angry that they felt justified to pay £110.000 on a member of staff (were do these salaries come from)and only £21,000 on a secondary awareness campaign. I know I am new to all this but I am already well aware to how our dx is treated. Lets get reality out there BCC . Use the money wisely. Mara ... View more

Hi everyone thanks for your answers. Philomena they were when I rang I checked their time tables. The last time I head from them was at my last surgeon meeting when they said they would be there for my op and call me at home neither happened. They were supposed to be there for my first onc appointment again a no show. By the time my op happened they knew I had a double whammy dx. I think that is when you fall of the list despite this being the most devastating time emotionally. My district nurses and Gp have been really supportive so have my great team at the hospital.the weakness in my case is the BCN nurses. I think this is why I was so aggravated. By the BCC body image campaign. They need to find out more a bout our experiences at dx and support afterwards. Not just as history girl said to be offered a feel good day. Just shows how little they deal with the devasting dx of secondaries. thanks again Mara ... View more

Bump ... View more

Hi doodlecat I just wanted you t o know you have not sent anyone to sleep. I have only just read the thread. It is o said that our treatments are such a lottery. The individual personalities of onc nd doctors play such a large part in our health. Has lilac says I hope you have one one strong to help you maybe they can take on these people because when we are vulnerable we are sometimes weak and do not ask the righg questions. I was getting frustrated yesterday because bcc nurse yet again had not returned my call. So I can only imagine how difficult all this iplease has suggested try and get a second opinion there are lots of good onc's and doc's out there. take care Mara xx ... View more

Whoops pressed the wrong button lol. i was going to say that the things are a little better now not sure why but I am coping. That is unil I meet up with supposely well meaning people asking me vey personnel questions. I am trying to stay private at the moment. That's why chatting on these boards really helps. thanks Sarah for starting us off on this discussion Mara ... View more

Hi Abbie We are on the same timeline . . After my lumpectomy an aixill clearance. I am exegeva shots and letrozole. I m still. In shock after receiving the Double whammy ... View more

Hi fudgeincornwall and Lanii just to say hi from a your neighbour in Devon. i am quite new to these boards like you I was diagnosed with mets at the same time. good luck with trials all of you mara ... View more

Hi Alison Thanks for posting the link. I will try and listen today. Had a busy few days Hospital visits etc. Lemongrove I was sorry to hear your news it is hard to be tough and double checking all the time we really shoulden't have to. Before BC I had an under active thyroid (well still have. Lol) i had to be my own adovacate took years to get it right. most doctors could not see out of the box and treatment was totally controlled. My response was to research and fight. Jjust got it sorted and then this happened. I was astonished to find that I will again have to be mine own advocate Well at least I have had some practice. take care everyone mara ... View more

Hi everyone I tried write a long reply and lost it. ( Took me ages) so i will Just to say how much I agree with you. i want my diagnosis to be recognised as the devasting illness it really is. Mara ... View more