Metastatic Mid-Life Crisis?

There was a time when I came online and there were lots of cyber friends here and lots going on.  It doesn't feel like that any more.  I used to spend hours reading every post on Inspire and usually answering every one, but I don't go there any more because I don't feel that I belong there any more.

Is this the Metastatic Breast Cancer equivalent of a Mid-Life Crisis?  I was diagnosed with breast cancer over 6 years ago, and in January it will be 6 years since they finally twigged that I really did have a problem with my hip and I was Stage IV all along.  Statistically I have been dead for over 3 years ... there is only one thing 'wrong'.  I'm not dead though, if truth be told, I wouldn't mind being dead.

My main problem with getting support is that I am not dying quickly enough.  I had CBT therapy, but they cut me free with the promise that if I had problems within six months I could just go straight back into the system.  They lied.  When I called I was told I would have to referred all over again and there was not guarantee that I would see the same therapist.  I saw the counsellor at the local Hospice for a while, but again I didn't die quickly enough so they discharged me.  When you are in no-mans-land of being stable no one is interested in supporting you.  My brother and his family are too busy to do anything to help me, except occasionally to ask me round for a meal.  If I drop in I feel as though I am intruding, or no one is in.  That said my niece is supposed to come an help me clear some stuff out of the house next week, but I'll wait to see if she actually turns up.  It is usually the case that if there is some paint to watch dry somewhere that comes first.

Part of the problem is that so few people are aware of MBC because there are three stages of breast cancer ... being a survivor, having a recurrence and end of life/death, and most folks know all about the first 'Pink' stage, wants to ignore the second, and only vaguely acknowledges the third when it is quoted to raise money for a 'cure'; aka treatment for Early Stage Breast Cancer.

At the moment I am off work with depression and stress from having worked the equivalent of over one and a half extra weeks in the last 7 weeks and now being told I have to get out of the office I have been in and go into the big main office with people who made a friend's life such a misery when she worked there that she left ... or in a converted cupboard.  What is even worse is that the people moving in to the office I was in don't even work for the organisation!

Do I feel as though I can express any of this ... no.  Why?  Because breast cancer is Pink and it is all about survivors who on the whole would rather eat something from the jungle than admit that we exist.  After all be don't want to stress them out, do we?  They are the important ones.  They have Primary BC and they are Survivors.

How can I express to my line manager the embarrassment of not being able to just get up and walk away from the chair because of the pain in my hips and lower back?  How do I explain that it is good to be near the loos because sometimes I just have to 'use the facilities'?  How do I explain that I don't want to be seen falling asleep at the mouse because I am so tired, or I just plain forget what I am doing and express my frustration about this?  How do I explain that sometimes I just sit and cry because I am tired, fed up, a friend has just died, I want the pain to go away and a myriad of other reasons.  How can I explain that sometimes I just need to be able to pull myself together without the critical stares of others?  How do I solve a problem like Vicki?

We are all in this together

We all have breasts.  They come in as many shapes, sizes and colours as there are people on this earth.  Few people are happy with what they have - too small, too big, a bit droopy - but if cancer is found in them it can be ... well embarrassing, if you are a man.  But wait! 

• Did you even realise that men can get breast cancer too? 
• Did you realise that because breast cancer is considered to be such a feminine thing that there is little information available, or encouragement to get any changes or lumps in the breast checked out properly by a doctor.  
• Did you realise that nearly all the medical information about treatments is written with only women in mind. 

Of course this means that there are some treatment side effects that men don't have to worry about ... vaginal dryness for instance, what a relief because there are a very few things that men won't have to worry about if they have a diagnosis, but has anyone really done any study into treatment side effects that might be unique to men with breast cancer?  Some information is available, like this publication from Breast Cancer Care in the UK which can be downloaded as a PDF anywhere in the world.   http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/men-breast-cancer-bcc14

Crabby and pissed off, and it's only partly Pinktober

Pardon my French, but at the moment I am in a bit (he-hum) mood.  Pinktober is on its way and I am not looking forward to it.  All the smiling and pretending that everything is great, that buying a pink ribbon really will make a difference when I know that it is a Pantomime.  The heroes (hooray) and the villains (boo) and, worst of all, the happy ending.

Things are not good at work.  The bloke I work with has been in a foul mood ever since the beginning of term and on Wednesday I eventually said why didn't he go home and he blew up.  He was sitting there saying he had nothing to do so I asked him to do a couple of things and he growled that he was busy of facebook.  I was trying to talk to someone on the phone and he starts playing a trailer for a TV series or film without the headphones plugged into the machine.  Give him something to do and he bitches, leave him alone and he groans and the final straw was when he started tapping his pen on the desk.  I've actually come to the conclusion that he was doing this on purpose.  My suggestion that he went home was because he really hates being there and wasn't going to offer to help me with work that was marked for his attention as well as mine because he likes to pick and choose what he wants to do.  He didn't come in on Thursday and started sending all this stuff through for me to do and when I asked that he didn't do so he emailed back, and I quote "Its what you getting F****** paid for you lazy bitch".  I have tried leaving him to sulk, I have tried letting him pick what he wants to do, which is basically nothing for any length of time, and I have tried getting him to do other bits.  None of it works.  He just glowers in the corner like a spoilt child who is having to realise that he is in his late 50's and has a crap job which he chose to come back to after the summer holidays.  I think I am beginning to understand why he has had a bewildering number of jobs over the years.  He can't get another job, though heaven only knows he has spent enough work time applying for them on line and just doesn't want to accept that he is a minion and not management any more.  On top of that the college has agreed this year to pay for him to do a teaching qualification, which as a member of staff he doesn't have to pay for!  All he has to do is just get on with the job for an academic year then he might be able to do some teaching.

I fully admit that I am not always a ray of sunshine and which the systems problems that we have had this term I haven't been in the best frame of mind, but I accept that it is a job, and who else is going to employ someone diagnosed with Metastatic Breast Cancer five years and eight months ago, and so statistically is living well into borrowed time.  Well all I can say to my colleague is put your big boy pants on and get on with it. 

On top of this I have been trying to get some information from Breast Cancer Care, the only UK BC charity that takes an interest in Metastatic Breast Cancer, about what they are planning for 13 October - what they call 'Secondary' Breast Cancer Day.  As of today, 29 September 2013 there is no information available.  Like we can all make plans at such short notice and support whatever they are going to focus on.  I see they have removed their most recent summary report which was for 2011, but basically this is the same information as they had up two years ago.  http://www.breastcancercare.org.uk/campaigning-volunteering/campaigning/current-campaigns/spotlight-secondary-breast-cancer .  I could become a Breast Cancer Voice, but I don't think they would want me because I am too vocal about what is not being done.  I'm not Pink.  At the moment I am a dark shade of blue.

4 April 2014 Stage IV (Metastatic) Breast Cancer Day in the UK

If anyone is interested in this I have started a facebook page https://www.facebook.com/groups/1420485158172456/

The Haven is coming my way.

In the UK we have a charity now called The Haven, formerly the Breast Cancer Haven, which I have always wanted to be able to go to.  Inevitably is started in London, then they set up one in Hereford and then Leeds.  Now they are raising funds to open a Haven in my area, and this news comes hot on the heels of finding that there is going to be a Maggie's Centre in Southampton.

Trying to get to London for early in the day is a long journey by trains packed with commuters, and it also costs a lot of money so it has always been out of the question for me; and yet the approach of The Haven, like that of the Penny Brohn Cancer Centre, is very holistic with alternative therapies, nutrition and Mindfulness Based Stress Reduction meditation at its core.  Dr Caroline Hoffman PhD from The Haven was the person who facilitated the MBSR trial that I took part in and which was actually only for those of us with Metastatic Breast Cancer.  This was done through Southampton General Hospital where my oncologist is based.  This sort of approach is exactly the approach I have taken to learn to deal with having incurable cancer. 

http://www.thehaven.org.uk/how-you-can-support-us/haven-wessex-appeal

Maggie's Centres are similar, but maybe just a bit more of a drop in type of place and are for those with all types of cancer.  The started in Edinburgh and are spreading.  They deal with Financial advice, nutrition, support groups for patients and families, exercise, creative writing etc.

http://maggiescentres.org/southampton/introduction.html

The most interesting thing will be to see what they do for Metastatic Breast Cancer, and how inclusive they would be.  I feel very wary of getting involved with cancer related things because I am 'out' about being Metastatic and there is always that awkwardness about now people react to this.  I guess it is a tiny bit like being gay and coming out.  It's that 'Oh!' moment followed by a silence as their brain recomputes what to say next.  It is just a fact of my life; can't change it, so get on with it.

Only a couple of days ago I was having a day dream about winning a huge amount on the Lottery and how I would tell certain people at work to hand in their notice because I was setting up a Metastatic Breast Cancer Centre, probably in the same village that I work in, and grew up in, because of the good transport links.  Who says dreams don't come true?

Going a bit mad here ... 4.4.2013 as Metastatic Breast Cancer Day?

This year the Triple Negative Breast Cancer Foundation had its inaugural Triple Negative Beast Cancer Day on 3 March - 3.3.2013 http://www.tnbcfoundation.org/tnbcday/index.html which they are planning to continue with in 2014.

Just before they announced this I was thinking that 4.4 should be for Stage IV Breast Cancer.  This is partly because the confusing I have about dates being written as two number because in the UK we put the day first and then the month, and in the US it is the month and then the day.  I get confused unless the date is obvious like 13.02, because there are only 12 months in the year (see how clever I am).  A friend was married this year on the third of January, which to her was 1.3.2013, but to me was 3.1.2013 - see the confusion.  This led me to think that if you have the same day and the same numbered month then no one can get confused, and then the TNBCF announced 3.3.2013.

So why can't 4.4.2013 be an inaugural Metastatic Breast Cancer Day to get us away from the who Pinktober thing.  No one takes any notice of us in October anyway and to be given just one day when the whole month should be more about MBC than Early Stage BC.  This day, 4 April, doesn't really have to be recognised by anyone but us and then try to spread the word.  We are not little children who have to ask permission to do something.  We are adults with an incurable disease and we would really like people to know how little support we get, and how little of the BC research funding goes to help us.  We are dying for research funding, literally.

It would be great if some of you would respond to this.  I don't have many friends, and those that I do on facebook at least, have probably blocked my posts because they focus on breast cancer and they just don't want to know.  Even my family never responds to anything that I post!

In fact wouldn't it be great if we could establish April and Stage IV Cancer Month ... or have I gone mad?

Watching paint dry is better than this!

So is the start of a new academic year where I work.  One week ago I went in to check that I could get on the systems and change my password etc only to find that the office had been stripped of shelves, drawer units and some other things, like the kettle.  An extra desk had been shoved in making it necessary to climb over the desks to get to the windows to open them, because someone nicked the window pole last term.  I thought that was bad.

Went into work on Monday to find that the systems aren't working properly and some of the functions that I rely on to do my job have disappeared altogether.  We were told not to come in on Tuesday because they might be able to sort it ... Wednesday couldn't do anything ...Thursday (today) couldn't do anything and have been told not to go in tomorrow.  It has been so mind numbingly boring that I was sure that somewhere there must be some paint to watch dry which would be more interesting.

What is even worse is that some people are rushed off their feet and no one will let me help them, partly because I don't have access to, and training on, their systems.  And, because everything is no computer based there isn't even some filing to help out with.

Who would have thought that washing up my mug at the end of the day would be the highlight of the day?

Caring, but at what price?

I have just been reading a book review in the New York Times today http://www.nytimes.com/2013/09/08/books/review/knocking-on-heavens-door-by-katy-butler.html?pagewanted=1&_r=0 and it has brought back memories of my childhood, which was spent in the shadow of a father dying of emphysema, angina and progressive blindness from glaucoma.

The book is inspired by the plight of the author's parents after her father suffered a stroke.  “Only later would I understand the rush,” Butler writes. “The hospital was losing money on him with every passing day. Out of $20,228 in services performed and billed, Medicare would reimburse Middlesex Memorial only $6,559, a lump sum based on the severity of my father’s stroke diagnosis.”  The problem of reimbursement for services rendered is not part of the British experience because we have the National Health Service, though the question of the cost of keeping a patient alive would certainly be a part of the equation here, but it is the consequences of the treatment which concerns me.

My mother spelt on a mattress on the sitting room floor after it was deemed that my brother and I should have separate rooms when we got to a certain age.  One of the things my brother and I had to do before going to bed was to bring her mattress into the sitting room.  It was the only way that she could get much sleep, and even that would depend on how well my father was during the night.

Father died just over two weeks after my 18th birthday, it was almost as though he had been waiting for me to be an 'adult' before he went.  He cast a mighty shadow over my life and his illnesses hastened the end of my mother's life.  She was 22 years younger than my father, but died 11 years after him at the age of 68.  When you compare this with her siblings; a sister who is still going strong at 89, one brother who died aged 90 and the other aged 97 it puts a spotlight on her death at over twenty years younger than them at the time of death.

When my father did die it was strange because for the first time that I could remember we didn't have to go out and get, or do, whatever we needed and rush home because father might be ill and was in need of constant attendance.  The idea of being able to browse in shops, stop for a chat, just do things without making arrangements was quite foreign to our whole way of thinking.  The needs of my father over rode the needs of anyone else in the family and the strain of trying not to upset him and bring on an angina attack was not an easy thing with someone on steroids in the 60's and 70's.  It is 35 years since he died and there wasn't even the possibility of having a mobile phone to remain in contact when we were out of the house.

The strain of being a carer for someone is not to be underestimated by anyone if the one they are caring for has a long term chronic illness.  We are not talking about months of caring, but years of caring.  My mother also ran the house, looked after a large garden which my father insisted should have big vegetable beds, partly because his family were Market Gardeners, and partly because they had lived through WW2 with food shortages, and that was just what people did then.  A garden was not an outside room, it was a factory for food.  All this with no help, but a lot of criticism, from my father, and in hind sight I would have to say with little help from my brother and I.  To us severe and chronic illness was just a normal part of life.  I have no memories of 'playing' with my father, but I remember the challenge every Spring to see if he could make it to the bench by the allotments in the village.

What would medical science have done to him today?  Would they have fitted a pace maker and resuscitated him repeatedly?  As it was he was able to go in his own time, and when his formidable determination had finally run its course.  When I was 12 doctors had given up on him and left him to die only to find he was still alive the next day.  This came in between my have an appendectomy and a few weeks later some large kidney stones removed.  My mother took up smoking again during this period - surprise, surprise.

So should the ability of medical science to keep someone alive over ride the natural process of dying?  It is a difficult balance to achieve; a moral and ethical minefield that exorcises the medical and legal professions as well as the religious sensibilities of many.  My father often said that they would not keep a dog alive in the condition he was in, but his own will to live was also strong as he often showed.  Ultimately I think the decision has to be made for and in the best interests of the family.  It is all very well doing 'miracles' of keeping people alive, but those who do the miracles don't have to live with the long term consequences.  We all have to be allowed to go in our own time.  It is scary, and something I have been forced to think of since my diagnosis of incurable Metastatic Breast Cancer.  I don't want to be a burden on anyone and have them put their own life on hold for me.  I want to be allowed to go when my time is right.  That doesn't mean that I won't fight for life for myself or others, but we have to be realistic to realise that we don't have the right to overstep the boundary of death and pull people back to a life they would not want for themselves, and if the carers could say so probably also a life that they don't want.  It has nothing to do with how much you love or care for someone, or whether you can give that love and caring, it is because in the end nature has the greatest power over all living things and we should respect that.

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.

Awareness is the word

It is the word that we hear all the time, so closely connected to breast cancer that it is almost a mantra.  Early detection saves lives; roll up, roll up, get your mammogram here; be Aware of The Symptoms.

But Awareness only seems to go along with the symptoms and catching it early.  Where is the Awareness when it is no longer and Early Stage form that can have a happy outcome?  How about some Awareness that even when cancer has become Late Stage that there is still a possibility of life and happiness even if you are considered to have incurable cancer.

My father died of emphysema less than three weeks after my 18th birthday.  I grew up witnessing and living alongside a disease that could not be cured and which was killing my father, so I guess I have always thought that there could be come sort of a life after a diagnosis of death.  What I find so difficult is the way that those of use living in the Valley Of The Shadow Of Death are not seen as being in a valley that can have sun as well as shadow; that can have beautiful and life affirming days even when we are traveling through it.  The path from one end of the valley to the other is not straight and although the terrain can be difficult there can be those days when you just have to smile at being alive and able to enjoy living.  I was driving out from Oxford to Witney earlier this week and I was just thinking what a perfect day it was and how amazing it was just to be there.  It was the kind of day where I could just have kept heading west into the Cotswolds and wandered around the villages that my ancestors inhabited.  But that world is also in my mind and my soul.  I may not be able to walk through the countryside as once I could, but my mind can still walk through those fields and along those roads just as many of my family did before me.

There is nothing new under the sun ... perhaps, but there are new things for me to do, or places to go because today is a new day that I have not lived before.

Awareness of breast cancer has to be about understanding an excepting the whole journey.  It is about being aware that things can go to plan and the patient can be a survivor, but in some cases it just doesn't work out the way that we would all like it to be.  Awareness is about not only supporting the 'winners' but also the 'losers' and making sure that they get the support that they need.  Why is it that all the support goes to those who, hopefully, will be ok?  Why do we have to sit and listen to people going on about how stressful it is knowing that your cancer might come back, that there might be a recurrence or progression.  Of course once you are in the Valley Of The Shadow you don't need help, understanding or support because ... well you're dead already - WRONG.  Those of us who are Valley-dwellers don't want anyone else to be part of Our Club.  We want to be exclusive, we want to be the last of the last but others keep turning up and joining in.  I have lived with Metastatic Breast Cancer for 66 months.  I didn't die the day I was diagnosed.  I didn't cease to exist, to have feelings or to need support and understanding and yet I, and so many others who live with MBC feel as though we are invisible and unwanted, having become some sort of Zombie - the walking dead.  I am alive, I can kick and I do exists - so get over it!

7 July 2013

At the beginning of the day the 7th of July was probably best known for being the anniversary of the London Underground and Bus Bombings.  By the end of today it is best known for the first time in 77 years that a British man has won the Men's Singles at Wimbledon.  It is one of those where were you on that sporting day, kind of days.  Do you remember when England won the World Cup in 1966?  The first sub-4 minute mile?  Botham's Ashes (going over to Ireland on a ferry for a friend's wedding and losing the coverage half way when he was taking wickets every over - or so it seemed).  Sebastian Coe and Steve Ovett breaking world records in the 800m, 1500m and the mile, then slogging it out in the Moscow Olympics in 1980.  Steve Redgrave and Matthew Pinsent in rowing; last summer's Olympics in London.

I didn't watch the match live, I have to admit, but I have just watched the highlights programme and I have to say I am impressed.  I gave up watching tennis because it seemed to be all big-serves and no rallies but it was actually a great game to watch with some excellent play.  Epic is a word that could be used.

A British man winning Wimbledon has been one of those 'Holy Grails' of British sport that I, for one, never really thought would come about in my life time.  It is one of those things that has Britain applauding the loser with a sense of here we go again ... until today!  It has happened!  Today we got to applaud the home grown winner and commiserate with a foreign loser; it is all rather alien to the British psyche.  British ... sport ... winner.  These have not often been synonymous.  However the irony is that those who are paid the most and who are pampered and preened the most are the least successful.  After all the last time England won the World Cup was in 1966 - 47 years ago, so if it is anything like Tennis we will have to wait another 30 years for a national football team that can actually win something.  Or maybe Brazil 2014?  Or maybe not.

Well done Andy Murray.  Huzzah.

Pure foods for babies

It is really worrying that so many companies are putting Genetically Modified foods into baby formulas and foods.  How can the companies that have produced these foods claim that they are the same as normal corn or soya when the term for them is Genetically MODIFIED, and they protect that modification with patents that, surely, can only be granted to a unique development or invention.



Also go to http://www.robynobrien.com/ and look at the TEDx talk that she did which is on the front page of the site.

The purity of our food is vital to dealing with a cancer diagnosis and good farming practices are essential for the environment and the biodiversity of this planet.  After all we have to protect this planet - it is the only one with Chocolate!

Acceptance is the new Pink

Just posted this on my other blog ...

http://inspiringmetastaticbreastcanceradvocacy.wordpress.com/2013/06/30/acceptance-is-the-new-pink/

Shouldn't we all join together to advocate for MBC?

But what, I hear you say, does MBC actually stand for.  For me it is Metastatic Breast Cancer but recently I have seen this acronym used to mean Male Breast Cancer.  I did a bit more thinking ... turned the heat down before I boiled over ... and began to come to the conclusion that we should be advocating together.  We are the breast cancer groups that the mainly Pink charities choose to ignore.  But why?

In the case of Metastatic Breast Cancer (MBC1) it is because we are an inconvenient Truth that doesn't fit marketing strategies.  As for Male Breast Cancer (MBC2) it is because breast cancer as a whole has become equated with Pink ... Feminine ... Boobs.  STOP!  Rewind!  Men have breasts as well don't they, just like we both have skin, livers, stomachs, bones, bowels ... you get the drift.  The statistical fact that men make up a much smaller part of the numbers of people with BC doesn't mean that they don't exist.  It doesn't mean that they aren't an equally important part of the equation. 

When the talk is about Survivors and Life After Breast Cancer, men fall into both categories.  Unfortunately because so many men down realise that they too can have breast cancer, they fall into the categories of Metastatic and Treatment Until Death far to often.  The first two categories are justifiably celebrated.  There is not a single person with MNC1 who wants even one more member of our 'Gang'.  For all the right reasons we don't want them to know what incurable cancer feels like; we want them to be able to move on and savour Life After Breast Cancer.  However, those in the first two categories should not shun those in the Incurable and Treatment Until Death sections.  They must learn to accept us and our journey, just as we celebrate theirs.

Breast Cancer is an equal opportunity disease.  It doesn't care about your gender, age, race, ethnicity, background, education, sexual orientation or religion, or any of those other 'labels' that humans can be filed under.  It will take anyone who gets in its way, but if you are lucky to have successful treatment in the early stages you have a good chance of being able to leave it by the wayside as you move on. 

But those labels - boy, can they stick; and not just with the general public, but also with the medical profession who seem to want to pigeon-hole breast cancer as a disease of those over 50, who smoke and are overweight.  I put my hand up to the overweight issue, but I have never smoked, had a very active job as a cleaner in a College, and I could possibly have been diagnosed when I was 42, and was finally diagnoses as Early Stage, and a few month later as Metastatic, when I was 47 years old.  It is almost as though you can't have breast cancer unless you tick certain boxes, and yet so many women that I have known have been younger than me, thinner than me, exercised more than me and did innumerable other things 'right' and still have lost their lives to this disease.  Breast feeding helps prevent ... wait a minute what about the woman who had breast-fed 8 children ... how many is the right number?  More than 4 but less that 6?  Pish-tosh. 

So why can't we all join forces and try and make it out into the sun and the flash-lights of the Pink Carpet along with the survivors and those living after cancer treatment?  MMBC?  Men and Mets Breast Cancer anyone?

71% don't know Metastatic Breast Cancer is incurable!

Well, according to a public survey commissioned by Novartis Oncology in the UK although 81% were aware that Early Stage Breast Cancer could be treated so a patience is disease free.  http://www.medicalnewstoday.com/releases/262209.php

In many ways this is the crux of the matter, especially as 20% of those questioned could not even know about, or could not define what Advance Breast Cancer is.

In the UK Metastatic Breast Cancer is usually referred to as Secondary Breast Cancer.  I highly object to this term because the very use of the word secondary makes it sound as though it is not as important coming in behind the more important Primary Breast Cancer.  They are first and we are second in so many ways.  Probably all hospitals have Breast Care Nurses but they disappear from view once you go through the Stage IV barrier into the incurable zone.

Of course the nearly 12,000 people who die each year of Metastatic Breast Cancer have some uses.  Our deaths are quoted to get donations to charities who concentrate all their effort on prevention and Early Stage Breast Cancer (Primary).  Our deaths are an indication that we got it wrong and didn't have any early detection to find the cancer at a curable Early Stage, but they don't like to mention that this is not the case.  They don't mention that 30% of those will Early Stage Breast Cancer will have a metastatic progression, and another 10% are diagnosed at Stage IV.  Our deaths are seen as mainly being of older women because in the UK you get into the screening programme when you turn 50.  In my case I had to phone them up and say too late, mate!  I was diagnosed with MBC when I was 47 years old, and by 50 I was already, statistically at least, dead.

Our deaths are used to raise money to make sure that it never happens again ... then what do they spend that money on?  Ninety Seven per cent, yes 97%, is spent of early detection and research into Early Stage BC and how to stop people getting breast cancer in the first place ... so if you already have MBC how does this help?  Three per cent of the research budget is used for MBC research into the form of the cancer which kills.  You don't die of Early Stage BC and if you are one of the lucky ones you will not have a recurrence and you won't develop MBC.  If you do ... you become one of the invisible.

The Here & Now campaign which had its Pan-European launch in Brussels recently has commissioned a sound installation by two well known artists called I Am Not The Cancer.  Evidently there will be a wider launch later in the year (presumably October) to raise awareness of Advanced Breast Cancer.  But, I wonder, why don't major companies actually do something about finding a cure for the good of those who have cancer, and not for the good of their company profit margin.  There are so many promising natural substances that could be developed which would really help without breaking down the body's immune system and ability to function in the way that cytotoxic chemotherapy can.  But they are not patentable and therefore there is not the big profit margins to be made from a blockbuster drug under patent and all the me-too drugs that are produced after that to hold on to the patent.

I don't want my eventual death to be another statistic to be waved in front of people to get them to give money to something that wouldn't have benefitted me anyway.  I have come across so many people who go on about all the money that goes to breast cancer by comparison to other cancers and in some ways they have a point.  All that money to find a cure, and what has it achieved?  Pink Ribbons, Races For Life, Wear Pink To Work days ... for a cure?  Not from where I stand.

3.30am ... can't sleep, again

In the wee small hours of the morning, when the whole wide world is fast asleep ... I lie awake wondering why that sounds so nice as a lyric to a song, when the truth is ... what the hell do I do until I am tired enough to go back to sleep?

I am in a bit of a pattern of waking about 3am until about 5am and then going back to sleep for a few hours.  At least I now don't have to get up to go to work by 8.30 as I now start work at 2pm, but I am finding it difficult to tell what time of day it is, and what day of the week it is as well.  My hours of work were changed and the number of hours I work was cut in the reorganisation of my part of the College.  Working in Education has its advantages, even for the Minions in the Support Staff, because I only have to work during term time but this reorganisation has left me feeling pretty side-lined partly because I feel disconnected with what is going on in the rest of the place.

What to do about not being able to sleep right now?  I live in a terraced house so I can't do some sewing on my machine in case I wake up the baby next door.  Experience tells me that Teddy Bears are not great conversationalists at this time in the morning.  I am actually too tired to read, but not tired enough to sleep.  Actually, does any of this make sense?  Am I rambling?

There was a time I could sleep well all night.  Now I toss and turn trying to get comfortable.  I have gone back to having the radio on low so that it distracts my thoughts just enough to get to sleep.

I think I have bored myself enough and I need to get back to bed and sleep.  Night!

Nature can help too ...

http://www.medicalnewstoday.com/articles/259069.php

So ... why are some people so against any of the natural substances that can help our bodies fight cancer, of any kind and not just breast cancer?  Why isn't more notice taken of the Environmental factors which are influencing our chances of developing cancer?  In 1964 there was a 1 in 20 chance of developing breast cancer during your life.  In 1971 Richard Nixon declared 'war' on cancer.  By 1981 there was a 1 in 14 chance and now it is 1 in 8.  TRILLIONS of $, £, Euros, and other currencies have been spent on trying to find a cure for cancer ... or have they?

Less than 3% of the money donated to breast cancer research is used for trying to find ways of dealing with Metastatic Breast Cancer, which is the kind that kills hundreds of thousands of men and women annually.  Please note that I mentioned that this is a disease which also kills men - a fact which is often ignored.  The number of men who die is small in comparison to the number of women who die but since when did one life become more valuable than another for any reason ... and gender certainly isn't a reason.

Where has all the money gone?

Why are we being told that breast cancer rates are improving?

When I was born I had a 1 in 20 chance ... by the time I was diagnosed with breast cancer it was 1 in 8.  NEWS FLASH - them ain't great odds and they are NOT getting better.  I am not a statistician and even I can spot that this isn't the improvement that we are being told there is.