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.

Human genes can not be patented

The United States Supreme Court has ruled that companies can not patent human genes and stop others researching specific genes or developing tests. 

http://bcaction.org/2013/06/13/victory-supreme-court-outlaws-human-gene-patents/

Why on earth was the patenting of human genes permitted?  How could one company be allowed to 'own' a human gene and dictate what tests and research could be done with that gene.  Whether or not you agree with Angelina Jolie's decision to have a double mastectomy because she is a carrier of one of the BCRA genes, the announcement came at a critical time to bring the cost of BCRA testing to the forefront of the press.  I don't know if this was intentional, but I think it must have made millions aware of this situation.  I don't deny any company the right to make a decent profit but some have taken this to obscene lengths.  In the case of the Banks they have had their snouts in the trough so long they don't seem to have any concept of what are fair profits and ethical practices.

Do some companies even comprehend that there are profits to be made, and extortionate profits to be made?  Value for money seems to be a concept that is foreign to them because they only value that they can see is profit for themselves and not value for the customer.

Health is a fundamental human right.  It is one that can not be guaranteed, and it is not one that can be possible for all people, but just think where medicine would be now if previous generations of  researchers and companies had taken a similar path to so many today.  Sadly many of the biggest advances in treatments come as a result of war, as with plastic surgery in WW2 with improvements in the treatment of those badly burned, especially in the RAF.  They came to realise that those who healed better were those who had been shot down over the sea, and that sea water had something to do with this healing process.  What would the tucked and tightened of today do if those who had discovered this had patented it? 

But not all of those who take out a patent do it to extract every last penny from their products.  In an interview I saw on the internet there was one lady (can't find it now) who had a royalty cheque of about $2.70 the previous year for the genes she had patented, and such people only have to do this so they can be protected them for others to research for better treatments. 

http://news.nationalgeographic.com/news/2013/06/130614-supreme-court-gene-patent-ruling-human-genome-science/

Homeless frogs and deforestation at Number 11!

So I did have a wildlife garden but now it is almost cleared.  In the process we have made several frogs homeless when their 'pot' was disturbed.  Years ago, when I could garden, I came across a frog, or maybe two, who seemed to like one patch of the garden.  So I put a broken pot over the area he liked in the hope that he would settle in ... roll on a decade or so and probably a generation of frogs or two and Stewart's clearing gave them the shock of their lives (and gave him a bit of a start as well!) when they were uncovered and leapt out of the pot-house at him.  The pot has gone back but I dare not look to see if the frogs have come back.  Mind you it might take them a while to trust my pot again.

I now have fences which are painted 'Forest Green' according to the label and the garden gate is also now Forest Green.  Looks good, though I am not sure how good it will be for the fence because the pot has been sitting around for about 10 years as well.

Of course all of this 'deforestation' at Number 11 has meant that some rather large holes have been uncovered in the fence I share with Number 10 so that will have to be tackled.  The level of one of my flowerbeds is higher than next doors, but luckily the 'deforestation' uncovered some breezeblocks that can be used to built a retaining wall before the panels are put in.  Work on that should start on Tuesday, weather permitting, and Stewart's motorbike which has not been well of late. 

Being able to reuse some of the materials I have around here is helping to make up for the loss of habitat for certain beasties.  There is so much to do and part of the plan is to make a slope down the garden that can take a wheelchair.  It is not that I am in need of a wheelchair yet, but it would make getting my drag-along shopping trolley up to the house a lot easier, and while I have the help and some of the materials I might as well get it done.  When I moved in my brother and his father-in-law, who is a brick layer by trade, did a lot of landscaping of the back garden.  Retaining walls were put in to get rid of the slopes, one of which was very steep and quite dangerous when I would forget that it was there and chase a piece of washing on the whirligig!  However when it came to the steps they were done the way my brother wanted them done, and now I find them a bit daunting at times.  Of course if we had thought far enough ahead we could have used the original slope for a ramp, but 19 years and a day ago when I got the keys to this house who was thinking that I would be in need of any such thing when I wasn't even close to being 40!

Another adaptation I have been thinking of is to have a loo and shower put in downstairs.  In the UK it is now compulsory to include a downstairs toilet in any new build, but not when this house was built.  Although I can manage the stairs it can sometimes be a struggle to get there on time, and that is all I am going to say on the subject!  It would also mean that if the sitting room needs to be made into a bedroom I have all the facilities I need down stairs, because the kitchen is already there.

It is a tough decision to have to make.  To have to far the need for solutions to problems that are likely to arise in the future, near or far.  We all have to face reality, no matter how reluctantly and I would rather have everything ready for when I really need it, than have to struggle to get things done in time.

In the meantime we are having a run of rather nice weather here in the south of England, even if it is still chilly when the sun isn't around.  Everything seems to be about a month late and although it is now May a lot of the trees are still just coming out, but it also means that the blossom is here, camellias and magnolias are in bloom.  I was walking into town a few days ago and stopped to look up at the sky through a cherry tree that is just coming into flower.  All I can say is WOW, life is good.

In an English Country Garden ...

Well, it is in England, in the country, and it is a garden, but it is more of a wild life sanctuary at the moment, or at least it has been.  My niece's brother-in-law has been clearing it a bit so it is beginning to look a bit more like a garden with flower beds rather than a trial to see which weed is more invasive than the next!

I can't dig any more, but I did plant out some potatoes today.  I got one of those potato growing bags a few weeks ago and I thought I ought to get on with it.  I now have a bag out in the garden with some seed pots in and it will be interesting to see how they grow.  Never tried this technique before, though I have grown tomatoes and peppers in grow bags before.  Since I had my hysterectomy in 2002 and my health got steadily worse the garden has been somewhat abandoned.  It used to be rather pretty and because it is small it was manageable.  About three years ago I cleared out the small bed which is under the dining room window.  It is only about 8ft by 1.5ft but I could hardly move for a couple of days and had to crawl over to the conservatory to use the step to get up!  I planted out some herbs there, which I really should make more use of.

Fresh food, straight from the garden - yum.  I remember when I was living in Utah for a few months over thirty years ago picking peaches and eating them still warmed by the sun.  It is not a crop that you can grow in England without a hot house, or a very sheltered south facing wall, but I remember the wonderful flavour.  So much of our food is harvested before it is ripe, especially warm climate fruits which have to be transported to the UK.  With things like melons you can buy them and then have to wait weeks for them to ripen, by which time you have given up looking at them and they have almost instantly started to go rotten.  I love supermarket's idea of 'ready-to-eat' fruit that you could use as hand grenades!

Food is such an important part of my approach to living with metastatic breast cancer, but it is something that I have very much neglected for the last year or so.  I get an organic vegetable box delivered every week, but I end up throwing some of it away because I don't get round to using it.  I used to take a big raw salad to work most days made with seeds, dried fruits, nuts and loads of veg, but now I don't start work until 2pm I don't do this.  I must get back in the habit of eating better because I feel that it is really starting to impact on my health.  I am, however, starting to feel that as I get more control over the state of my house and garden that I will be able to take back some control over my relationship with food.  It is so important, but sometimes I have to admit that I feel a lack of motivation to still be alive ... but there must be a reason.  ?

Mug Rugs and Bunting

I have been madly gathering up a supply of fabric recently.  The daft thing is that I have given a load away over the last few years thinking that I would never need it ... now I do.  The shocking thing is how expensive fabric is these days!

I saw a book on Amazon (other internet bookshops are available) by Christa Rolf called 'Mug Rugs' and I just had to get it.  They are so sweet and a great way of using up scraps by making patchwork rugs for mugs to sit on.  My mother used to make all my clothes when I was a child: she being a child of the Great Depression and 'Make Do & Mend' of World War II and the rationing that continued in the UK for several years.  My parents always taught me to 'keep it, it might come in useful', which may explain why I still have a problem throwing things away to this day.  That was why I took the fabrics I thought I wouldn't need to the textiles department at the college where I work, so they could come in useful for someone. 

The first time I did some patchwork was when I had not long turned 12.  I had my appendix taken out, but they had realised that there was nothing wrong with it but evidently once they go for the appendix they have to remove it.  Further tests showed that I had kidney stones which were removed 6 weeks later.  In between these two operations my father was extremely ill and in hospital and at one point they thought he would die as there was nothing more that they could do for him.  Needless to say this was a rather stressful time for my mother and to keep herself occupied she started to make a quilt from the scraps left over from the dressmaking she had done for my brother and myself over the years.  To give me something to do I was also roped in to doing this.  Now here I am, 40 years later and caught by the patchwork bug again!

Today I made some bunting for a farewell present for someone who is leaving the college where I work for a better job much closer to home.  She is to be married next year and wants a vintage theme and I have managed to make the bunting in the colours she will have as part of her theme!  I always knew I was a genius (occasionally).

Having something that I can focus on and lose myself in is a wonderful thing.  To lose myself in creating something is so rewarding on so many levels.  I have something to show for the time and effort at the end of it, and the very act of creating a unique piece of work is a reward in itself.  There is always the anticipation of wondering if it really will work; have I read and interpreted the pattern correctly ... and I also get to use up so many of those little bits of fabric that are left over from bigger projects.

Renewal - Spring is officially here

It doesn't really feel like it in the UK at the moment.  We are in a cold snap and last I heard April was supposed to be cold as well.  I have to admit that I have become so used to the cold that warm weather is becoming a dim and distant memory.

The clocks went forward at 2am for the beginning of British Summer Time so the evenings are going to be longer, and for a short time the mornings will seem a bit darker, but only if you are up early enough to notice, that is.  For me it is the start of the two weeks of the Easter holidays which means no work.  For the first time in several years I haven't booked to go anywhere for this week and I am rather chuffed with myself that I have started the promised clear up and sort out in my house.  I have recently bought some new curtains which have been hung, though one pair needs to be shortened because it is an odd length window.  I have cut one side and hung it up so it can drop a bit, but I can't be bothered to take the other one down today to start altering it.

I have opened up some of the things I had for my birthday last month and I am certainly going to make use of the 'To Do List' pad.  The pages can be hung on your door handle so I can make a list and put it on the door so I can see it before I leave.  So much easier to leave it behind that way, and be reminded of this when I shut the door when I get home.  Handily, of course, it will be there for me to miss the next day as well.  Brain = sieve.

Happy as I am to have made a start it is scary how much there is yet to do.  As much as I want to de-clutter my life this comes in direct conflict with the instinct to keep something because it might be useful one day ... because it can still have use; still have a purpose.  At least recycling is a God-send in this because it helps to ease my conscience at getting rid of things.  I do try to resist the temptation to palm things off on other people though?  After all what if they don't recycle something that can actually be used again?  What if they just chuck it away?  It isn't the value of the item, it is its innate usefulness that has to be kept in mind.  Well that and the fact that as soon as you get rid of something you need it again!  Karma?

Talking of Karma, I have been following Deepak Chopra's 21-Day Meditation Challenge which started on 11 March.  I have to admit to having missed a few days, so I am lagging behind a bit and have about 4 days to catch up with but I have enjoyed it.  Perfect Health may be the theme, but this is an elusive thing for so many of us.  I like to think that my mind and spirit has become healthier since my body developed cancer.  This may sound like a contradiction but health is so much more than having a buff body.  I never had that even as a small child but I do finally think I have found some peace and contentment.

Oh, if anyone is interested in Metastatic Breast Cancer Advocacy I have started a little website for those who don't want to go on facebook http://imbcagroup.wix.com/advocacy# so check it out, especially the event happening on 15 April on the steps of the Supreme Court in Washington DC.  Just follow the link.

Things change all the time

I finally made it up to Gloucester and I have already been shopping.  I really needed to get moving after nearly four hours in the car due to hold ups getting here.  There was an incident on the roundabout where the road that I was travelling on intersected with the M4.  Mind you, these days I don't really worry about how long it takes to get somewhere when I don't have to be somewhere at a certain time.  The only problem I have is that I have been getting quite a lot of pain in my right leg when I am in the car for a while.

What is hard to do it keep this in perspective.  I have no proof that the problem is caused by my bone mets or that they have started to progress.  Normally I go for acupuncture every two weeks, but this time it was three weeks because Justin went to Slovenia for a skiing holiday.  This week I have had no reflexology which also doesn't help.  I take an approach that includes far more than just the conventional approach.  For me there is no way that I can stick to just the treatment prescribed by MDs.  I think part of the problem is that I have learned from the process of my diagnosis not to trust the medical profession and blindly believe that they have the only answers.  I believe that cancer is caused by a 'perfect storm' of events and influences so I take a 'perfect storm' approach of trying different things to deal with it on more than just the slash/burn/poison approach of western medicine.  I have to deal with it on a personal and spiritual basis.  It took a while to get over my anger and realise that there is nothing that can be done to change my diagnosis.  Yes there was evidence 6 years before my diagnosis that I might have cancer and it was ignored by conventional medicine because I was "too" young. 

Trying to find a way to co-exist with cancer is difficult.  After all no one actually does this willingly and one important thing has been to change my approach as my ways of dealing with this has changed.  I firmly believe in remaining open to new information and evidence about approaches that may help me.  After all it was once believed that the earth was flat.  As I have progressed through 5 years of living with this I have changed some things.  I don't actually meditate as much as I used to because I have found ways of doing this as a part of my life, rather than as a separate thing.  It has become a part of the normal pattern of my life.  It is important to do the things that are important at this stage of my life and not remain in a pattern that I have outgrown.  I am not the same person who was diagnosed over 5 years ago, and I am not the same person as I will be in a year's time.

Thank Crunchie it's Friday

After a sewing marathon on Tuesday afternoon and Wednesday morning I have come down to earth with a bit of a bump.  I feel as though I have used up all my energy for a while.  Yesterday I woke up at 10.30 when I needed to be at my Tai Chi class at 11.15 and even when I got there I was still half asleep and my balance was shot, which takes away the fluidity of the movements when you are trying not to fall over.

This morning I only remembered that I needed to have a blood test done today before my treatment next week when a reminder popped up on my screen.  Groan!  So I had to get a move on because now they have gone back to the 'take and number and wait' system it has been taking about and hours and a half to get through to have the bloods taken.

It did, however, give me the time to be able to get to work early to be able to sort out all the freebies that I have collected lately for the All-Ways Healthy campaign which will be starting on the 11th.  I have had a look at all the stuff that I have and I've labelled the boxes according to which day of the week they will be needed; and I made up some goodie bags for the out-centres of the college.  So all in all I am feeling a bit virtuous today, even if I wish I could sleep for a week - or at least a weekend.

It is hard not to think that my cancer may finally be progressing when I have had an increase in pain and stiffness in my back, and also with the stability of my lower back in particular.  I just keep having to tell myself that I have no proof of any progression, and it is probably connected to not wearing the special insoles in my shoes which have been recommended to me by my acupuncturer (is there such a thing?).  My old shoes started to fall apart and I just hadn't got around to transferring the insoles to my newer shoes.  This is probably a bit of an own-goal really.  Just because I am too lazy to do something it really just means that I am not being proactive and helping myself.

To be honest I have more faith in myself to prolong my survival that I do in the medical profession.  I think that I can influence the cancer by the way if think, deal with stress and what I eat.  However before I can do any of that I need to get some sleep g'night.

Am I wasting my time?

As many of you will know I work in a college in the UK.  College here is mainly for 16 - 19 year olds who are doing A-levels or vocational courses.  I came up with the idea of a week devoted to the awareness of various health and living issues and we are going to have days devoted to different themes - health, mental issues, leisure, food and relationships.  I have been gathering some hand outs and freebies to do with some of these issues and along the way I have spent my own money on getting some items such as some mugs, T-shirts and banners printed to try and tie it all together with a uniform presentation.  This evening I am beginning to wonder why I am bothering.  I gave one of the mugs to the Principal's PA as a gift for the Principal.  I received no acknowledgement of this and as I found it abandoned in the staff kitchen today I can only assume that it is thought of as a bit of a joke.

So why am I wasting my time?  I came up with the idea not to make the college look good, or may the senior management look as though they are doing a good job, but because it matters to me that maybe one of the 3,500 students will remember something that could help them in the future, and with the Teenage Cancer Trust coming on one day, something that may even save their life, or the life of another if they recognise the symptoms in time. 

In the UK it is the perfect time to get them thinking about what they eat as something more than a collection of calories.  There are morals and ethics involved with what we consume to say nothing of the environmental impact that agriculture has on the entire world, especially when people haven't got a clue that there is such a thing as seasonal fruit and vegetables.  Riverford (http://www.riverford.co.uk/) are going to let us have some healthy eating booklets to hand out and are also donating some organic fruit boxes.  I have an organic vegetable box delivered by them every week because I believe that organic food is much better than 'conventionally' farmed produce, and part of that ethos is working to enhance the soil and the environment and not to strip it of every nutrient possible as it destroys the soil and its environment.  Organisations like Riverford actually seem to understand that they are the guardians of the land and not its exploiters.

While there is a chance that the message of how we live is as important as the fact that we live I am just going to plod on and hope for the best.

Becoming a sew and sew

There used to be a time when I made most of my clothes but for some reason I stopped.  I actually gave away many of the fabrics that I had in store because I knew that I would never get round to using them ... and then ... I got the quilting bug!

I was staying in the city of Bath for a few days last week and over the weekend just gone and I wandered around the compact Georgian city searching out fabric shops.  They are few and far between these days, but Bath has some great independent shops including Country Threads http://www.countrythreadspatchwork.co.uk/ which is an absolute Aladdin's Cave of material delights.  It is one of those places where it is actually really difficult to make a decision about what to buy.  There was so much in the reception area, and then you can go down a narrow passage to a large room full of bolts of materials that could make your head spin.  I especially fell in love with the Sakura Park designs by Moda.

Where do you start?  What colours to use?  What pattern to use?  Argh ... I'm melting ...

Another project that I have been volunteered for is to make a christening gown for Sophie (great niece) because Vicky (niece) wants to have her christened soon.  Evidently she had a large shawl that came with her wedding dress and is in the same fabric and Vicky wants me to make an heirloom gown that can be handed down.  So on Sunday we are going pattern hunting.  I was the last one to wear the family christening gown 53 years ago, which my mother always said she gave back to my aunt, but my aunt says she doesn't have.  Mind you my grandmother lived with my aunt towards the end of her life and she had dementia so who knows ... she once gave a diamond ring to the milkman who was honest enough to give it back to my aunt!

I don't think I will ever go back to making my own clothes, but I am determined to have some fun with the fabrics I have already gathered together ... and that is without touching the very favourite designs I kept back; though I guess I will have to hope that the moth didn't get to them first.

Sew mad!

There was a time when I made most of my own clothes.  I never learned tailoring but I could turn my sewing machine to blouses, dresses, skirts and the like.  I would have to say that I have never been a great one for being at the forefront of fashion, I just don't have the figure for that but when my sewing machine gave up, so did I.

A few months ago I got another sewing machine which will take a while to get used to because the foot pedal works the 'other' way round, and the lever to lift the sewing foot is in completely the 'wrong' place, but it is nice to have a machine again.  I bought a skirt a couple of years ago and the first time I wore it I stepped on the hem as I was going up stairs and ripped it along a seam.  I have been able to mend that and wear it again, but the main reason I got it was to be able to make some blocks for the Lost Inspiration Quilt in memory of friends who have died of Metastatic Breast Cancer.  I finished the first three blocks last weekend and posted them off to Texas on Monday because Theresa and Sheryl will be working together this weekend to start putting the blocks together.

It has been a long time since I did any patchwork quilting.  My mother and I made one in 1972 because she needed something to do, and had plenty of offcuts from dressmaking, because between February and April that year I had two operations and in between my father nearly died of the emphysema he had when I was growing up.  He died six years later.  Funnily I can still remember the clothes that she had made with the materials that we were using.  My mother made nearly all my clothes when I was growing up and before she was married she had worked for Singer's, the sewing machine people.  Mu mother was in the WRAF (Woman's Royal Air Force) during the War and was posted out to Paris in 1945.  She hoped to be de-mobbed out there because she wanted to train to be a pattern cutter, and where better to do that than Paris?  Sadly her father was dying so she had to come home and was eventually de-mobbed in the UK.

The Lost Inspiration Quilt is named because of the friends I have lost from the Inspire forum, the Inspirettes as I call them.  I feel strongly that we need to give a face to those who have died from this disease, and not just count them as another statistic.  Melissa died leaving 5 children, the youngest of which was only about 3 years old.  Lisa left four children to mourn her loss for the rest of their lives and the youngest was about 12 when she died.  If we just quite the fact that 40,000 people will die of MBC this year in the US, and 11,000 in the UK that will have a limited impact.  Tell them that Edwina, Marsha, Patsy, Maureen, Karis, Gilda, Kristine, Laurie, Barbara, Alecia, Renee, Christine, Bobby, Linda, Lisa, Ann, Deborah, Pati, Irene, Erice, Julie, Kelly, Kelly, Melissa, Wendy, Kim and Laura have died in the last four months, and that they are just the ones I know about, well somehow it makes it personal.  It makes it personal because it is personal.  They all left people who will miss them forever and a day.  We need to make sure that the day will come when there are treatments that at the very least turn this disease into a chronic disease, or better still a cure.

Quilting and a Quandery

After sleeping for about 12 hours I was up before 6am and getting ready to spend the morning waiting for a delivery.  The morning wasn't much of a loss because it was grey and I filled in the time getting some quilting done and some new blocks cut out.  It is always difficult to know which side of the house a delivery is going to come.  The back of the house actually faces out on to the street, because originally access was going to be at the front of the house, which is now facing away from the road.  Also because I live in a small terrace of houses sometimes people can't find their way up the path between two terraces to be able to find the front of the house anyway.

So; have rotary cutter and cutting mat and will cut out to my heart's content.  I am still working on the Quilt blocks for what I call the Lost Inspiration Quilt in memory of friends who have died from Metastatic Breast cancer.  The trouble is that I am not sure what to say about each of those I am doing a block for, or at least for the first friend.  What do you say about someone else?  How should I use her words to express her story?  Do I just give the bare facts that she was diagnosed as Stage 3 in 2006, and Stage 4 in 2009.  He mother and best friend died in February 2009, her sister had committed suicide at the age of 42 in 1989, her father was diagnosed with Alzheimer's when she was already Stage 4 and she had no support from her brother and his family.  Do I tell how lonely she was and how the only person that really gave her any support was her boss.  One co-worker had actually asked her how she had enjoyed her time off when she went back to work after one treatment break.

Hope do we portray the loneliness of a Stage 4 diagnosis?  The knowledge that we are going to be killed by this dis-ease.  Can you imagine living with that knowledge, a father with rapidly advancing Alzheimer's, the recent loss of your mother, the lack of support from your remaining sibling and the trauma of having to tell your parents over twenty years before that their elder daughter had taken her own life.  But there was also a journey to some form of self-empowerment of acceptance.  This is not a case of giving up, but of not allowing cancer the power of taking your life as well as causing your death.  This is a very individual journey, and one that in my experience has moments of complete despair, great job, peace, anger, contentment and acceptance of our own humanity on so many levels.

I have come to accept my own frailties of character and the sorrow of not having lived the kind of life that I may have, but there again what is the point of fretting about this now?  I can't go back and change anything.  I will not marry, and I will not be able to have children, but it is, what it is, so all that is left is to make the most of the time that I do have.  In some ways the present has been so much more fulfilling and complete than before.  I no longer worry about what others think of me, or of pleasing others.  I do things that have meaning to me and that I want to do.

This is what I see as the gift that cancer has given me.  It has cleared a lot of the mess out of my life, it has pared it down to what is essential like the sound of birds singing and just allowing myself to be happy.  What more could any of us want in life and I just hope my friend managed to find some of that contentment.

Insomnia

So here I am at 3.35am writing a blog entry when I should be sleeping.  Remember when it was possible to sleep all night and well into the morning?  When the idea of getting up before noon seemed to be a bit of a laugh.  I have several nights in a row when I sleep very badly, and then I just zonk out on another day to try and catch up at least a little bit of the lost time.

Once the brain cell engages I know that there is no point in staying in bed because I will just toss and turn and make things worse.  So frequently I will get up and 'play' on the computer until I get tired enough to need to go back to bed.  Right now I am tired, but the brain cell is buzzing.

Tonight I forgot to put the radio on quietly to help me sleep.  Somehow having the radio buzzing away quietly in the background really helps me to sleep.  I go through phases where this helps, and others when it doesn't and I need complete silence to drift off to sleep.  It really is just a matter of finding what suits you at the time.

If I am very anxious about something I try to use visualisation techniques and Mindfulness to calm my mind down and allow the arms of Morpheus to close around me.  By distracting the mind and taking it to a place and time when I was happy and felt good I can allow the whole of my body to relax more.  A vital part of this is to concentrate on the breath; the cooler air coming in through the nostrils and then the slightly warmer air coming out.  Mix that with the visualisation of a beautiful view from a hill on the North Devon coast and ... well I think I need to go back to bed now ...

I hate passwords

I hate passwords and sites that seem to just decide that your password is no longer valid.  I've just spent five minutes trying to log back in to this blog and I was seriously thinking on strangling the mouse!  It's ok mouse, it wasn't your fault, I know that, but you were just the first thing to hand at the time.  I don't want to be told that my password was changed 17 days ago, when I know that it wasn't, so do this and then do that and set a new password (and you are NOT allowed to use a previous password) which has to be longer that this, but shorter than that ... blah.

Mind you, wouldn't it be great if we could have a password to life that we could just reset every now and then and then carry on?  Could we do that with cancer?  Find out where things went wrong and then just change the password that was used at that point and continue on?

I have, however, reached a point where I don't think that I can imagine my life without cancer and this is partly because I didn't have much of a life before cancer.  Not a life that meant anything anyway.  I really do appreciate life far more these days, and I feel far more connected to society and the world around me.  My life has changed a lot in the last 10 years, but especially in the last 5 years.  I think I have come to value myself much more than I ever used to.  I think of myself as having a positive contribution to make, even if it is just to show that you can live with incurable cancer.

The key word there for me is with.  I probably will never get rid of the little beastie but I have learned to co-exist with it by putting it in its place which is in my life, but not at the centre of my life.  That area of my life is reserved for doing things that have meaning to me, if no one else.  The centre of my life has become about fulfilment, meaning, contributing and enjoying just being alive.  It isn't about the grand things in life, about having my photo taken in front of the Taj Mahal, the Pyramids or the Grand Canyon but it is about photos of my family and people that I meet, about places that I visit, of things that I want to do.  I no longer try to be perfect.  I no longer try to be someone that is 'acceptable' to others.  I am someone who is acceptable to me.

Laugh? I cried!

A colleague said something last night that just caught me off balance and slightly more than tickled my funny bone.  In short I lost it.  I laughed, I cried ... I had to rush to the loo; and this morning it is still making me laugh and smile.  Normally I probably wouldn't have found it more than mildly amusing, but yesterday.  My laughter set off my colleague, and he was trying to leave a message on voice mail for someone and ended up having to put the phone down without being able to finish the message.  He sent an Email instead!

It is a bit like the film Blazing Saddles, and the famous bean scene.  Sometimes I can laugh till I cry at that, and other times I just find it mildly amusing at most or just plain infantile; but talking about infantile isn't it amazing how 'we' find it funny when someone farts.  It is like being a little child again who is giggling uncontrollably with a hand clutched over their mouth as sparks of amusement coming out of their eyes.  In some ways this is the secret of enjoying and appreciating life.  To be able to have the wonder of a small child at even the simplest of things.  We lose that as we grow up, but it is the secret of Mindfulness.

All I can say is that last night I was very Mindful!  And so to Tai Chi class ...

FIVE today

Yes it was FIVE years ago today that the hospital finally noticed that I had metastatic breast cancer.  Time flies when you are having this much fun, but it is difficult to take in that I really have made it to FIVE years.  When they had done the scans, done the hip replacement and were finally going to discharge me I asked that, the 'how long have I got' question ... six months possibly a year.  How wrong were they?

Today I had a Tai Chi class this morning and then had to go into work; so how wrong were they again?  VERY.  My biggest regret is that I wasted months in a blizzard of tears, anger, despair and depression because there just didn't seem to be any hope.  At that time I didn't have the internet at home and so I couldn't look for any help in cyber world and there was certainly nothing on offer at the hospital.  You become a non-entity when you pass over to the other side of survivorship; the side where the is rarely anything vaguely like a happy ending.  That hurt, and to be honest I felt as though I was being placed on the rubbish heap because no one cared and no one wanted to reach out a helping hand.  This all goes to Early Stage Breast Cancer and ask just about anyone with Late Stage BC and they will tell you that not only do they feel that they have 'failed' somewhere along the line, but that they are made to feel that they have failed.

When you go on a breast cancer website, other than pink of course, what hits you?  Survivors ... life after cancer and treatment ... moving forward.  Hmmm.  Not sure that anyone with late stage Metastatic Breast Cancer (MBC) feels too much at home with any of that, or are able to identify with life after breast cancer because by the mere definition of our diagnosis there is no life after breast cancer.  That is precisely what we won't have.  Somewhere down the bottom of the page, or tucked away at the side you might find something about MBC.  However who really needs the help and support?  Those who stand a good chance of surviving?  Or those who have almost no chance of surviving?  I have made it to five years, but the chances of my being here in another 5 years is 2%; or to put it another way there is a 98% chance that I won't make it to 10 years.  Them ain't good odds by any stretch of any imagination.  If you were offered those odds on a horse race you would laugh at the suggestion that you would make a bet, but ... I am now more of a lottery playing type.  The odds of winning may be astronomical but I'm going to give it a flutter anyway.

What I wish most is that no one else who receives a MBC diagnosis should have to take some long to find the inspiration to believe that they do have a future.  I am Spartacus!  I am Woman - hear me roar.