Really sorry to hear that xeloda might not be working. Of course you are scared…we are all scared at different stages with this dreadful disease…what I don’t like is when people who are having an OK time tell people who are in a dark place not to dwell on the dark place. The reality of course is that we all go in and out of the good and bad times…except if I’m honest the good times are never that ‘good’ but thats cause I think cancer is a pile of poo with no uplifting features.
I’m lucky in my area in that good pallaitive services and masses of psychlogical support if you want it…problem is I find that all the psychological support in the world don’t make a difference to the loneliness of serious illness.
I do know what you’re saying and it is scary and totally agree with you about people who are having an OK time telling others not to dwell - they should try it sometimes as it’s not easy to do is it.
I have found out today that I definitely have meningeal’s disease so will be having wbr starting on 22 December so not really looking forward to that.
Although I’ll be off Xeloda while having radiotherapy my oncologist wants me to go back on it once the treatment has finished because she still thinks it’s slowing it down but not to the extent it was and this meningeal’s disease is just another complication to what’s already going on for me.
I know quite a few people in the palliative care team (through the work I do on the advisory groups) but there seems to be a huge gap here when someone is diagnosed with mets that they’re not automatically seen by the palliative care team for assessment.
I’m on an advisory group for a breathlessness intervention service and I have a friend who is an ideal candidate for that but no-one in our area was aware of this service (based in Cambridge) so I contacted my Macmillan nurse (who also happens to be my friend’s Mac nurse) and she was referred to the service. She’s been seen by the physio and also followed up by the Consultant for Palliative Care and has been given tips and tools for her breathlessness and also medication (amitryptaline) but it makes me so mad that it was a patient that inadvertently highlighted this service!
I agree with you that it’s not always the case that having psychological input will necessarily help - I’ve done too much work and personal development within my job to want to go down that road although I know our clinical psychologist as a friend but probably would never take her up on the offer of help - probably too stubborn! But the main thing for me is that they are there to listen if I ever do need them as I do know so many within the hospital as quite a lot of us probably do - having been up there for the past 4 years every 3 weeks you get to know them.
Don’t worry girls, I have no intention of posting again. Opinions were canvassed-I offered one. I didn’t expect to be told that this merited that I should “have my neck wrung”. I too have secondaries so know only too well the roller coaster of emotions. However, as we saw just a few weeks ago, several other members felt obliged to leave due to similair heavy handed tactics. I have no desire to participate in a forum where each and every opinion is not treated as being as valid as the next-whether you agree with that opinion or not. Much though it goes against the grain, I will continue to use the forum to access information, but will refrain from posting again. It feels wrong to do so-as if I’ll be taking plenty, and giving nothing back in return, and this is not in my nature.I seem, however, to be left with little choice.
Pinkdove I’m really sorry to hear about your progression. Good Luck with wbr…I hope you and your family still manage to enjoy Christmas.
Take Care…Belinda…xx
I am so so sorry you feel like this - but understand why you do!!!
I have read ‘arguments’ too often on here and am just dumfounded by them every time. I dont usually comment on them but I strongly believe that we should respect what each other has to say - if we dont like it (and we wont like everything what everyone says, or share the same opinion) - then we should keep our negative opinions to ourselves.
Everyone is entitled to their own opinion, thats what open forums are about and I hate to see people being ‘chased’ off.
Hope you do keep posting
Love
S
xx
Obviously its my neck…sorry people who are offended but I can’t remove my post now or yours won’t make sense…and honestly it is what I think, though I use the phrase metaphorically of course. If people on here can criticise celebs like Trisha Goddard who say things which someone else disagree with about how to behave with cancer, then isn’t it OK to do the same when people are actually posting?
Two wrongs do not make a right Jane! So no, it is not OK.
Of course you are entitled to your opinion but you should be expressing it with respect for others who post here. Critising and humiliating other women who post here is simply wrong. Disagree by all means but posting statements saying you would like to ‘ring their necks’ is totally unacceptable in my view.
This forum is for support, not for scoring points!
I am not getting involved with this heated discussion, just wanted to say. I don’t post much now as also 2 and a half years down the line. Had all the treatment that you had and felt the anger that you felt as well. Now I am back at work full time and life has returned to normal what ever that may be. You will feel differently in time, I now find I can get through the day without thinking about BC, this is something I never thought I would say. If you develop seconaries and remember it is an if you may feel differently. My advise for what it is worth, is put your head down and just get on with the treatment there is a very good chance that there will be light at the end of the tunnel. I can see the light at the end of my tunnel although I know I still have a way to go. Enjoy Xmas.
Take care. Lots of love.
Geraldine45
Elaine, I feel just the same as you.I have considered a few times in the past whether to carry on coming on this site or not as I,too feel a bit intimidated by certain comments made.Some people,are more articulate and get their point across better than others.And if you don’t,you just seem to get shouted down.
I will not apologize for being upbeat and positive.I am fed up for being made to feel guilty for using those words on this site by certain people! I am not spending the rest of my months/years being miserable!
I am sorry that some people have been offended by my ‘(w)ring your necks’ metaphor which was probably an unfortunate turn of phrase, though I stand by the general points I was making in my post. I would remove the offending words but it then makes a nonsense of others’ remarks about it. So stay it will unless the moderator chooses to remove it which is fine by me.
Dear all
We have been following this thread and we want to make it very clear that we are here to ensure an atmosphere where everyone who wants to post feels comfortable to do so. If you feel we are achieving this, or if you feel we are not stepping in enough, please let us know either on here by private message or by emailing the moderator.
As you may be aware, we are at the moment gathering together reasons why people don’t post and are very interested in your thoughts and comments on this if you have at one time or another felt that you would like to post but didn’t for whatever reasons.
Our aim is to provide a safe and supportive atmosphere for anyone who wishes to post and we would appreciate your help in ensuring this happens at all times.
I have been away so fortunately have not followed this thread until now.
What we have to remember is its very easy to misunderstand people when they just post their opinion or thoughts becasue we cannot see their facial expressions. We can’t have a face to face discussion which is so much easier when misunderstandings occur.
Some of us are outspoken and call a spade a spade others are quieter and keep things to themselves.
Some day i am going to write a book about my involvement on BC internet sites. I think it would probably be half horrific and half pleasurable.
One of the biggest problems i found is over involvement and dependence on any internet site, its just not helpful.
I wanted to say though that i know so many people with primary Bc and also people some who have posted on here with secondaries. They ALL react differently and do the best they can to survive and cope. If one is super positive (hate that word) and one is falling to bits like i was after DX, I dont think more of one than i would the other.
When my mum was alive she used to quote a poem from the 1st world war, The soldier said how much he loved life and how he didnt want to die.
I for one admire the courage and determination of secondary ladies and hope to God if i am ever faced with it i will have an attitude and the strength like so many have on here.
Please dont rip my post to pieces (LOL)
Lets lighten up hey, this site is so helpful to so many of us.
What an interesting, enlightening thread. I have just finished treatment (TAC chemo, bi-lat mtx, and rads) for primary BC. Large triple neg tumour, ANC (5 out of 19 nodes affected with spread into surrounding tissue). There is no more treatment for me, so no years of taking drugs so ensure IT won’t come back. My NPI is not good and yes I am SCARED. Everyone around me says how positive I am, yes on the surface, but underneath I am screaming. My hubby is as good as gold but I can’t let him see how frightened I am, he seems to think that having all the treatment will mean that I am going to be fine once I am over the side effects and not to look ‘on the black side’ as he puts it ‘we all have to go some time and you could walk under a bus tomorrow’. What utter bullsxxt I can’t help it, I want to see my grandchildren grow up, I have a lot of places to see and masses of things to do and need to do them NOW! I can’t seem to make him understand that I don’t have time to waste any more. If I get secondaries, I will take whatever they throw at me. BC took seven years to kill my cousin and she went through hell. At the time I always said if I got it I would not have treatment. It’s funny how self preservation kicks in isn’t it.
Sorry if I’ve upset anyone, don’t mean to, but this seems to be the only place I can really let my feelings show.
I was dx originally July 07 - through everything at it and I was dx with secondaries last week. I have so much to fit in - I hope they can keep me well enough to do it all. I start chemo again on 28th!!
I am sure its hard for your hubby to understand how you feel, I have no partner, but my dad is being a bit like that - when I told him I was not staring treatment till after xmas in case this was my last he said - dont talk like that. I hope its not my last christmas but I am not going to live whats left of my life with regrets.
I hope you stay clear for many many year, or even forever, but live your life just in case your not. I do hope you can make your hubby understand that