Sad :O(

I had been a member of the Inspire forum (Advanced Breast Cancer Group) since May 2009.  When I first joined it was an absolute life line to others who had Metastatic Breast Cancer (aka Advanced BC) and gave me a sense of community with others that I didn't have on a personal basis.  I live alone and have no immediate family.  I don't feel able to ask what family I do have to help me because they are inevitably 'too busy', and I don't want to be a burden to them any sooner than I may become one.

The relief of being able to commune with others who just understood was immense; people that I didn't need to explain how the knowledge that your cancer cannot be cured actually feels like; people who just get it.  You are starting from an even playing field.  I have met very few of my friends on Inspire as many live thousands of miles away, but I feel a connection with them which runs very deep.

Recently there have been new members who seem to want to be argumentative and strident about their point of view and who just don't seem to get the concept of accepting other points of view.  Heaven only knows I have had my run-ins with members over the years, but these new members seem to report others to the moderators using terms like 'mean girls' and turning things into a 'Junior High' sort of environment.  Members have been banned because of this when they are expressing an opinion.  These new members don't seem to have the empathy or understanding that others might be upset or having a bad day and in my opinion they are the ones who have turned it into a sort of Junior High with their complaints.  We are all big girls, dealing with the biggest girl's problem of all - the fact that we have an incurable disease which will probably be the cause of our death many years before we should have died.

Sadly it is no longer a place I wish to be and that is really upsetting.  It is now a place that is sucking the life out of me, rather that uplifting me and giving me a sense of community. 

Will I ever go back ... right now I don't think so.  I just don't need the stress.  I don't know if the advocacy work I am trying to do is worth the effort.  Hardly anyone ever comments on my posts, and I wonder if anyone is listening, or reading what I have to say.  Some blogs get a lot of comments ... does everyone disagree with me?  Am I wrong in what I write?  Is there any point?

The closer it gets, aka I hate Breast Cancer Awareness Month

It's coming in about 5 weeks.  The dreaded time of year when I will be constantly reminded that I am not one of the Survivors.  That my pink ribbon has a band of black on it for the friends I have lost since the PinkFest last year ... Angela, Corinne, LaVonda - stop!  The list is too long.

Here in the UK only one of the breast cancer charities actually seems to do any campaigning for Metastatic Breast Cancer, and I have gone back to their web site and it just seems to be the same thing that they were doing two years ago.  They have figured out that support for those with MBC is inadequate (wonder how much they spent on that study/survey).  Heck, they are still trying to find out how many of us there are in the UK living with Metastatic disease, though they actually got the pilot scheme up and running last year; so I guess that is some sort of progress.

Why are they wasting time and resources finding out what anyone could already tell them.  Finding out what anyone involved with breast cancer clinics could easily tell them.  Exactly how many years is this going to drag on before there is anything actually done ... I don't think I will live to see it, that's for sure.

Evidently the pilot also found that four years since change was called for, 47% of the 598 patients identified were not recorded as having been referred to a breast or palliative care clinical nurse specialist or any other key worker following the diagnosis of their recurrence/metastasis. 

That's because there are virtually no breast clinical nurse specialists for Metastatic patients because all the support goes to those with Early Stage Breast Cancer, who of course, since they are considered curable, really need all the support rather than those of us with the incurable form of the disease who need none.  That is obvious, isn't it?

Why is this?  Because everyone has been brainwashed (not to mention Pinkwashed) into believing that breast cancer is a totally curable disease which is similar to having your appendix out.  Nothing too serious and you get a free boob job thrown in if you are lucky.  Breast Cancer is about pretty pale pink ribbons, pink wigs, pink t-shirts, pink feather boas and races, walks and wearing pink to work.

Isn't it?

Breast Cancer Awareness video - It's not just about Mammograms

I have recently been working on some Metastatic Breast Cancer awareness videos and this is one I made earlier (this morning) - points there for a gratuitous Blue Peter reference for anyone in the UK.  I am hoping that as many people as possible will watch it and also share it on facebook, twitter etc.

Too often BCAMonth is all about Pink Ribbons and Mammograms.  For some of us it is a difficult month to have the message that breast cancer is curable thrust down our throats when well over 400,000 people die of the disease each year.  Ten per cent of those who die are in the US and about 20% are in the European Union, of which the United Kingdom is a part.  Deaths are only mentioned when they want people to give money for a 'cure' but 97% of those funds go to research for those with Early Stage BC, and only 3% for those with the incurable form of the disease!

http://youtu.be/QPIOF9LplWc

Listening

I am in Gloucester at the moment to attend the 286th Three Choirs Festival in the cathedral, and other venues in the city.  I came three years ago when it was last in Gloucester and it is something that has stayed with me; the sound of instruments and voices reverberating in the cathedral which is one of my favourite places.  I attended Evensong yesterday which was broadcast live on Radio 3 (so some of you may be able to get it on the BBC iPlayer if you are interested), but as always what really came to my mind was the sound, the use of the acoustic and the fact that this space has been used for worship for at least 900 years.  It is also the way that hearing something 'live' really makes you listen to what you are hearing, as well as finding new things that you hadn't noticed before.  When sound is around you, you have to follow it and locate it.  On the radio/CD player/MP3 it is just there in your ear and the fact that you don't have to locate it in the same way means that you don't listen to it with the same sort of concentration.

I was reading a blog earlier this morning which is also about listening http://kdhhealthcomm.wordpress.com/2013/07/31/reach-for-your-best/.  How many of us feel that doctors just don't listen?  That they have made a diagnosis almost before you have walked in the room and said a word?  How many of us actually think they are even listening to what we have to say? 

The medical profession doesn't feel the need to listen to the patient because they have all the answers already, and they have a medical degree ... true, but you don't happen to inhabit my body, have my symptoms or know how I am feeling.  If various doctors had listened to me, looked at their own test results and ignored the statistics which said I was too young to have breast cancer I may not now have Stage IV, Metastatic Breast Cancer.  Of course I understand that I may still have had a progression to Stage IV, but when health car professionals are constantly going on about early detection saving lives ... I find it a bit hard to take.  After all they didn't listen to me.

At the moment the NHS has a campaign about lung cancer.  If you have had a cough for more than three weeks go and see your doctor and get it checked out.  Chances are it is not lung cancer, but if it is then getting it early makes it more treatable.  Wonderful.  But I have a friend who has had a cough for 18 months, has mentioned it to her doctor and nothing has been done.  Well, or course, she doesn't smoke so maybe that is what rules out the possibility of lung cancer because statistics say ...

I am not a statistic on a piece of paper, I am a statistic that is moving and breathing and you need to listen to me to locate my problem.  I am not the skeleton hanging in the medical school classroom, and I am not a list of symptoms given in a certain order of 'importance' as dictated by statistics.

I am fully aware that my cancer is incurable.  I am fully aware that there may be nothing you can do about some symptoms.  I just want to feel that you have listened to me, acted on what I have said, and then told me the truth of the situation.  If there is nothing you can do, then so be it, but my experience with the medical profession has left me feeling that they will only do something when it is too late because you don't present with the top 3 symptoms as statistically you are supposed to.  So do me a favour doc and just listen.