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.