I passed my MOT!

For those of you not in the UK an MOT test is a Ministry of Transport test which is done annually on vehicles over three years old to assess that they are road-worthy.

I had my 1 Year MOT of my left hip and they have decided that I don't need to go back there!  Evidently it should last me about 20 years, so I guess I will be due for a refit somewhere around Christmas 2031.  Heavens!  When you see a date written down like that some how it seems as though it should have a 'Star Date' tag in front of it.  So earlier in the year I was under the care of Poole, Bournemouth and Southampton hospitals and I have been fired by the first two.  Not bad going!  I am just working on the last one, which is the sticky one as that is where I have my cancer treatment, but at the moment I only actually have to go into the hospital once every three months because I can have my treatments in the town where I live.

For some this may be the 'holiday' season, but for me it is the birthday season because my left hip is one on the 14 December, my right hip is five on 22 January and the rest of me is 53 in February!  I'm trying to thing what other bits I can have done so I can extent the season!  No, maybe not.  The birthday I am most looking forward to is my right hip's fifth birthday.  When they did that I was told I had six months to possibly a year to live because of Metastatic Breast Cancer!  Shows what they know!  Worryingly it means that I only have about 15 years until it will need to be replaced, but I guess I will just have to cross that bridge when I get to it.

Oh well, no more wasting time, off for blood tests pre-treatment on Wednesday :O(

Lucy

Just as one child has entered the family another one left ... childhood at least.  On 14 November 2012 my niece Lucy turned 18 and legally became an adult.  Last night we went to The Lamb at Winkton and had a big family meal complete with new great-grandparents and their 5 day old great-granddaughter Sophie.  However the star of the show was a grand daughter Lucy.

I had gone into town yesterday to get some helium balloons, but one of them made an escape for the stars when I moved it to the boot of my car and the ribbon hadn't been fastened securely.  So she just had the two, which as I got them had to have teddy bears on them!  I also got some table confetti with shiny 18's, stars, hearts and flowers, but I only remembered them this morning, which isn't a great deal of help!

On my side of the family Lucy doesn't have many relatives.  Her grandfather, my father, died about three weeks after my 18th birthday.  Her grandmother died 5 years before she was born so most of those present were from her mother's side of the family and they are a close family.  I suppose I have always felt a lack of family especially as I have never married or had children - no one ever really wanted me.  I feel separate from them, and rather like an intruder.  For a couple of years of Lucy's childhood I didn't see her at all, despite the fact that we lived in the same town, but this is getting melancholy. 

Will I make it to Lucy's 21st, her wedding, celebrating her children?  Who knows, after all first she has to find out which way she wants to go with her life.  In which case I had better get round to learning how to use Skype so I can keep up with it all!

Sophie

This little lady came into this world at 00.56am on Monday 12 November 2012.  You can tell that her mum is a hair stylist - look at all that hair!  No wondering if her hair will grow, it already has.

She is presented to the world by Vicky and Trevor Sheppard, and the photo was taken by her Auntie Lucy Ford who will be 18 in two days time.  Her name is Sophie, a sister for Holly.

I do like Mondays!

My niece Vicky Sheppard and husband Trevor Sheppard are the proud parents of Sophie, born 12.56 am 12 November 2012 weighing 9lb 1oz by C-section. CONGRATULATIONS and so pleased that she is here at last and congrats to Holly who now has a little sister to boss around! So grandparents Marcus Ford and Lyrain Ford can go and get some sleep as well - your going to need it, and so will Auntie Lucy!

♥ S ♥ O ♥ P ♥ H ♥ I ♥ E♥

I posted this on my facebook page this morning.  At last a Monday morning with good news and something to look forward to, like meeting my great-niece Sophie for the first time.  I do like this Monday!  Sophie was having some breathing difficulties because they think she got stuck so she went off to Neonatal, but should be with mum later today.  Everyone can get a bit of sleep in the mean time, and they are going to need it!

Trevor dropped a knife on his foot on the 7th, which was the due date, and has severed a tendon in his foot which will need an operation to reattach it, so dad is hobbling and mum has stitches!  Welcome to the world Sophie ... things will get better, honest!

Windows 8 is a mystery!

I have not been posting for some time because my PC power pack blew, and it turned out that I was also having problems with the hard drive.  So on Friday I collected a new PC and yesterday I got a new router for the internet connection because I have changed provider.  I have been having a lot of internet connection problems for the last few months which has meant the loss of some posts on various sites and forums, and a huge amount of frustration because it has been difficult to keep up with what has been posted and what hasn't.  There have also just been days when I have given up on the internet before I smashed the monitor!

I now feel rather disconnected from what is going on.  These days I rarely watch TV; preferring instead to used the BBC iPlayer for most of the programmes I want to see on a regular basis, or to catch up with things I have missed.

The only problem with the new PC is that it runs Windows 8 and it is causing me all sorts of problems.  Maybe if I already had an iPhone or iPad it might not be as confusing, but at the moment all I can say is where is the start button for the my computer thingy!?  Why can't I have two or more non internet explorer pages sitting at the bottom of the page waiting for me to click them into life?  It is not that I am a technophobe but I do like things to be where I can find them, and not where I have to search for everything.  When I ordered the PC last Wednesday it didn't really occur to me that Windows 8 would be that different.  So, be warned those who are not computer geeks, it will take you some time to get used to it.

The other problem is that all my favourites have disappeared and it has been an effort to start finding things again.  For a while I thought I had lost this blog as I struggled to get to grips with this new system, but I am slowly getting the hang of it, but if you hear the sound of breaking glass, it is the monitor following its previous partner...

It is almost time to say goodbye Pinktober

A part of me wonders just how much breast cancer awareness month actually achieves.  After all a whole month!  We don't have Remembrance Month, just the 11th day of the 11th month and Remembrance Sunday.  We Christmas Day and Easter Day.  I don't know about you but a month seems to drag on ... and on ... and on ...

Why not a week?  Something that can be focused on, comes and then is gone for another year, rather than something that doesn't have a definate start and finish.  Maybe an Opening and Closing ceremony like the Olympics, with a pink ribbon torch burning in between?  I know that this may all sound a bit flippant, but it isn't ... totally.  Not only that but there are so many different breast cancer organisations which all have their own events going on, and their own ribbon design, it all gets a little confusing. Maybe these organisations could just set out exactly what it is that they do, what they support, or maybe just become one organisation.  These days I have an attention span which can be so short it would embarrass a flea, so what is tonight's breast cancer event and what is their message?  Why not have one big event?

Isn't the problem partly that too many people believe that it won't happen to them because if so many of the foods we eat, things we buy and what is happening to the environment was so bad wouldn't the politicians be doing something about it, like banning some of this stuff?  That sounds so naive and obvious, but sometimes those are the very things that politicians forget.

Disgusted of Tunbridge Wells

Ok, I just couldn't resist the temptation.  For those of you who don't know the story behind the title of this blog I will enlighten you.  There may actually have been, or there reputedly was, a correspondent who wrote to a national newspaper and signed himself as 'Disgusted of Tunbridge Wells' on a letter complaining about something.  After that it got a bit of a life of its own.  As I actually am in Tunbridge Wells, which was one of the first Spa towns there the genteel would go to take the medicial waters at the moment it just had to be done.  I was actually down on the Pantiles today, the original centre to fashionable TW and they are doing some work to a building there.  It has boarding up to protect the public from the work going on and there is some 'graffitti' from Disgusted of Tunbridge Wells, and other such humourous sayings written to entertain those who are passing. 

The public is now deemed to be in need of protection from a building site rather than being expected to have any common sense when coming into the vacinity of something like a building site.  Common sense - whatever happened to that?  It used to be something that we were expected to acquire over the years, it is sometimes also called the blindingly obvious, but now we seem to need to be told what common sense is, and when we should apply it.  It has become something that politicians singularly lack.

I was amused a week or two ago when the European Union was awarded the Nobel Peace Prize  !  !  Yugoslavia and its former constituent parts spring to mind immediately when 'Peace in Europe' is mentioned, but I think that someone has conveniently forgotten that.  Just what the Nobel Peace Prize committee (if there is such a thing) is thinking heaven only knows, but this ranks with Obama getting it now long ago for ... not sure about that one.

I suppose the Nobel Prize organisation hasn't completely lost its common sense ... after all it didn't award the European Union with the Nobel Prize for Economics!

Finding my way

Each of us has to find a way of dealing with a diagnosis of metastastic breast cancer, or metastatic any cancer for that matter.  I think we have all been there with the OMG I'm going to die, and I for one went through a long period of being angry and not really knowing where to turn.  I live alone.  I don't really have close friends around me and my brother and his family are always too busy, especially now that my niece is about to have their first grandbaby.  I am sure that they would be there for me in the event of an emergency, well my sister-in-law would, but sometimes you just need people around you to remind you that ordinary life still goes on and also to just readjust your train of thought and get you to concentrate on something different, something mundane.  When your mind gets hold of something it can be really difficult to alter the way you are thinking without some sort of external distraction and stimulation and sometimes the trivial is just what you need to snap you out of it..

That may be one reason that I have come to rely so much on having a computer and internet access.  This has really been brought home to me because on Sunday morning I went down stairs to put some washing on and came back to find that my computer was ... dead.  Just the flicking of the light to show that the monitor was still working but the main part of the PC was just gone, silent, vacant! 

I have been working on a project to try and find the name and obituary of as many of my on-line friends and those who use one of the same forums as I do.  These are the people who just know where I am coming from.  These are the people you don't have to try and explain things to.  These are the people who know what it is like in the wee small hours of the morning when your mind is racing in any direction except in the direction of peace, contentment and sleep.  I really miss being able to go into my 'office' and log on at any time of day and see what is going on somewhere else in the world.  I have a netbook which I am using at the moment, but I don't like the lap-top style keyboard, and earlier this week I finally fired the finger mouse and got out an old mouse mouse to use.  Oh the joys of clicking and scrolling!

The problem is also partially my internet connection and I am in the middle of changing providers in the hope that things will improve and I won't get the incessant Internet Explorer Has Stopped Working notification which makes me just give up some times.  I was trying to create a group on facebook yesterday and managed at the fourth or fifth attempt, which was going to be my last try before giving up on the whole idea.  Essentially I suppose, I have become one of those sad individuals who is addicted to the internet and their forums.  They are my friends and companions and my blogs are my way of being able to express my thoughts, on my opinions for right or wrong.  I hope someone can breathe new life into my PC soon ...

Oh yes, I forgot to tell you some good news

Tuesday was 'go to see the oncologist to get your scan results' day.  It was not one that I was looking forward to because over the last couple of months my walking has got worse and I've been limping more.  The results were STABLE - again - with a possibility of something starting at L1 in my spine.  It was almost a year since I had a bone scan and I really had begun to wonder what was going on, but last Saturday my pelvis began to shift and the pressure on my right femur has lessened.  Phew!

It is 5 years since the x-ray was taken that showed that my right hip was about to collapse.  The average survival time for someone with Metastatic Breast Cancer would suggest that I have been dead for at least two years, which just goes to show that there is no way that you should go by statistics because it is another way of saying this is an educated guess at best.  Personally I don't think that I have ever fitted into the average category of anything, and I really just can't be bothered to become average now ... not with my statistical life expectancy!

The scan results have given me the confidence to think about what I am going to do in the summer holidays.  I work in a tertiary college (mainly 16 - 19 year olds) so I have a long break in the summer.  Next year, 2013, the Three Choirs Festival returns to Gloucester Cathedral on its three year rotation between Gloucester, Worcester and Hereford, and I fancy going again. The programme won't come out until next year, but I really enjoyed it in 2012 sitting in the choir and listening to the amazing music floating around me.  As one of the evensong services was broadcast on the BBC I suppose I can technically claim that I have sung on the radio!  Yes, that was me you could hear in the distant background and not a howling dog!

But first there is winter to get through, and on Sunday the clocks will be going back one hour to Greenwich Mean Time and the end of British Summer Time.  In some ways I like Autumn and winter, with the drawing in of the days and it is less that two months now until the shortest day.  I actually rather like being able to snuggle up at home with a hot drink and a good book,  or even my PC if it ever comes back home ...

Computer problems

On Sunday morning my PC just stopped working.  I went downstairs to put some washing on and I came back up to a blank screen.  I am hoping to get someone to look at it tomorrow and at least retrieve some data off it, especially my Lost Inspiration project where I have been trying to put a name and face to all those we have lost over the years at the Inspire forum.

Each one of us has an individual path to follow but there are also places that I can go where people just 'get it' because they are on a similar path.  For me the only contact with these fellow travellers is via the internet and my computer and I feel rather lost without it.  I am staying on at work this evening to get some computer time and just remind people that I exist because it is lonely without you all.  I feel rather as though I am in limbo and I know that it will impact on me even more because I will not be at work next week and even though I have a netbook my internet connection at home is rubbish (and I don't especially like laptop style keyboards).  I fired the finger mouse a couple of days ago before I threw it against the wall and now I at least have a mouse mouse, even if the internet access is not up to much.  I can at least play spider solitaire without the added frustration of trying to move the cursor around with my finger.  Who invented this devise?  Did they work for the Spanish Inquisition in a past life?  Are they Martians?

I better go home now ... night ...

Each cancer is individual and should be treated that way

How unique is my cancer?  Totally! 

That is one of the problems with cancer and trying to find treatments - they are all so different.  From the 'outside' it may seem that there is just one disease which should be able to be treated in a uniform manner.  Recent research has shown that it is now possible to identify 4 main sub-groups for breast cancer. 

"This has led to tests, not yet widely used in the NHS, such as ‘PAM50’. This examines 50 separate genes inside a woman’s tumour, and uses the resulting ‘fingerprint’ to group cancers into four subtypes’:

• Luminal A cancers, which are usually ER+ and/or PR+ – and make up about half of all cases. They tend to have low amounts of Her2. Women with these tumours tend to have the best outlook.
• Luminal B cancers, which again tend to be ER+ and/or PR+, but also Her2+. These have a good outlook (but not as good as luminal A cancers), and account for about 12 per cent of cancers.
• Her2-amplified cancers. About one in ten cancers are ER and PR negative, but have high levels of Her2. These tumours have a poorer outlook than the two types above, but can be treated with trastuzumab (Herceptin).
• Basal-like tumours – these are usually the ‘triple-negative’ cancers mentioned above, and make up about 20 per cent of tumours. They have the least favourable outlook.  http://scienceblog.cancerresearchuk.org/2012/04/18/increasing-the-resolution-on-breast-cancer-the-metabric-study/ "

Cancer Research UK have helped fund a genetic study which has identified 10 sub-groups of breast cancer  http://www.nature.com/nature/journal/v486/n7403/full/nature10983.html. 

The ten ‘clusters’

Here’s an overview of the characteristics of each of the clusters identified:

Cluster	Outlook	Copy number defects	Comparisons and other notes
1	Intermediate	Chromosome 17	‘Luminal B’-like, generally ER+
2	Poor	2 x faults on chromosome 11	Mixture of luminal A&B
3	Good	Very few	‘Luminal A’-like
4	Good	Very few, mainly immune system genes	High levels of immune cells in tumour
5	Extremely poor	Chromosome 17 (Her2 gene)	Mixture of ‘Luminal B’ and ‘Her2’
6	Intermediate	Region of chromosome 8 deleted	ER+, generally Luminal
7	Good	Chromosome 16	Luminal A
8	Good	Chromosomes 1 & 16	Luminal A
9	Intermediate	Ch 8 and/or 20	Luminal/ER+
10	Poor 5-year outcome; good long-term outcome if alive at 5 years	Chrs 5, 8, 10 and 12	Basal-like

http://scienceblog.cancerresearchuk.org/2012/04/18/increasing-the-resolution-on-breast-cancer-the-metabric-study/

In fact what all this research shows it how individual each cancer is and how differently each should be treated.  I remember reading an article about Herceptin in a daily paper in the UK when it first came into use on the NHS.  The lady at the centre of the story was claiming that she was having her life shortened by being denied Herceptin, and this was the gist of many articles at the time.  However a short bit at the end of the emotive piece came from the hospital treating her and explaining that because she wasn't HER2+ this new treatment would not help her.  At the time Herceptin was being publicised as though it was a cure for breast cancer, full stop.

Just as there is no one form of cancer there is no 'one cure fits all' approach that can be taken; even within a sub-group.  It is all very confusing, even for those of us who have some understanding of the whole thing, but then I am not a scientist.

While the conventional medical approach should be taylored to the individual and not the type of cancer, I am personally convinced that everyone should use alternative therapies just as individually.  Let me make it clear that by alternative therapies I am not talking about standing on your head under a crystal reciting a mantra.  I am talking about nutrition, supplements and therapies such as acupuncture, reflexology (both of which I have access to and use), reiki, Chinese Herbal Medicine and so on.  There are also approaches such as Mindfulness Meditation, or any form of meditation, Tai Chi, Qi Gong, healing with or without a religious connection, which can have an enormous impact on the health and well being of any cancer patient, be they Stage 0 or Stage IV.  These are treatments which empower the patient, which may be why conventional medicine is not all that keen on them! 

The individual should also be empowered with an understanding of their cancer, if they are the kind of person who wants that knowledge and understanding; and I do appreciate that not everyone is that kind of a individual.  However, for some of us knowledge is power.  After all are you really going to understand why you have to take something like Tamoxifen for five years after your early stage breast cancer treatment if you don't understand why it is necessary.  In the UK someone was doing a survey of tracing how many people were continuing with their Tamoxifen treatment by tracking their repeat prescription requests.  Don't know the out come of that, or whether they contacted any individual who was not continuing with the treatment to find out why they had stopped.  It would be interesting to know.

I am as individual as my cancer is, and that is how I would like to be treated by health care professionals and other practitioners.  Maybe that is one reason I like acupuncture and Chinese Herbal Medicine so much.  It is taylored to the individual at that specific time and that is my choice.  It may not be yours, but then you are an individual as well...

And now for something completely different.

They say that humour is one of the best medications ... read on and prepare to laugh (says she wiping away tears of laughter).  Great start to any Saturday!

Church Ladies With typewriters. They're Back!

Those wonderful Church Bulletins! Thank Goodness for church ladies with typewriters. These sentences (with all the BLOOPERS) actually appeared in church bulletins,
The Fasting & Prayer Conference includes meals...

The sermon this morning: Jesus Walks on the Water.
The sermon tonight: Searching for Jesus.

Ladies, don't forget the rummage sale. It's a chance to get rid of those things not worth keeping around the house.  Bring your husbands.

Remember in prayer the many who are sick of our community. Smile at someone who is hard to love. Say 'Hell'to someone who doesn't care much about you...

Don't let worry kill you off - let the Church help.

Miss Charlene Mason sang 'I will not pass this way again,' giving obvious pleasure to the congregation.

For those of you who have children and don't know it, we have a nursery downstairs.

Next Thursday there will be tryouts for the choir. They need all the help they can get.

Irving Benson and Jessie Carter were married on October 24 in the church. So ends a friendship that began in their school days.

A bean supper will be held on Tuesday evening in the church hall. Music will follow...

At the evening service tonight, the sermon topic will be 'What Is Hell?' Come early and listen to our choir practice.

Eight new choir robes are currently needed due to the addition of several new members and to the deterioration of some older ones.

Scouts are saving aluminum cans, bottles and other items to be recycled. Proceeds will be used to cripple children.

The church will host an evening of fine dining, super entertainment and gracious hostility

Potluck supper Sunday at 5pm - prayer and medication to follow.

The ladies of the Church have cast off clothing of every kind. They may be seen in the basement on Friday afternoon.

This evening at 7pm there will be a hymn singing in the park across from the Church. Bring a blanket and come
prepared to sin.

Ladies Bible Study will be held Thursday morning at 10am. All ladies are invited to lunch in the Fellowship Hall after the B. S. Is done.

The pastor would appreciate it if the ladies of the Congregation would lend him their electric girdles for the pancake breakfast next Sunday.

Low Self Esteem Support Group will meet Thursday at 7pm. Please use the back door.

The eighth-graders will be presenting Shakespeare's Hamlet in the Church basement Friday at 7pm. The congregation is invited to attend this tragedy

First Presbyterian Church. Please use large double door at the side entrance.

The Associate Minister unveiled the church's new campaign slogan last Sunday: "I Upped My Pledge - Up Yours".

I am the face of cancer

One of the biggest problems with getting the awareness message over is that noone thinks it will happen to them.  Even though my mother had breast cancer when she was 53 I didn't really think that much about it, partly because I haven't really noticed that somehow I have got to be 52 years old - FIFTY TWO.  I mean I blinked somewhere about 27 and then I was 47, and I had breast cancer.  How the hell did that happen?

Suddenly cancer did have a very real face, and it was my face looking back at me in the mirror each day, only now it is 'The Face Of Metastatic Breast Cancer' with which I have a complete connection of, understanding of and empathy with.  I understand the fears, anxiety, depression and hope of this face because I am connected to it and I know that this is my reality.  Cold, unforgiving reality.

The problem really is that there are so many messages out there about what you should or should not do.  One minute it is right, but then it is wrong.  Red wine - yes today; any alcohol - no tomorrow.  Maybe the saddest thing of all is that politicians, who are so ready to butt into every part of our lives, don't seem to want to butt into what food producers and manufacturers are doing.  When was it that we became all about self-gratification and only eating something that is totally irresistable, well according to the advertising company?  Why can't food just be good for you and taste nice?  When did the packaging and marketing of food become more important that the actual nutritional value of that food?

I have chosen to take Traditional Chinese Herbal Medicine.  It tastes yuk, but it is good for me, it is helping my body resist the charms of that cunning creature called cancer, but now it seems that even medicine has to taste nice and be flavoured (probably with a load of artificial E numbers) so that there isn't a hint of yukkiness about it.  But, I ask, what is wrong with a mouthful of something that doesn't taste delicious if it is going to help keep 'The Face Of Metastatic Breast Cancer' alive.  I know the choice is mine with concern with TCHM, but what is wrong with something more ordinary like eating broccolli if it is good for you, even if it isn't your favourite vegetable?

The thing is that somewhere along the line there is also a little matter of personal responsibility.  I know that this is controversial when it is related to a cancer diagnosis but there is some personal responsibility involved.  I am not saying that this was necessarily a conscious responsibility.  I worked as a cleaner in a college for 20 years and I know that I have been exposed to some fairly strong, concentrated chemicals over the years, which now I think about it might have contributed to my diagnosis.  There wasn't even compulsory protective clothing when I started, but maybe I should have been more aware of the environmental factors that can cause cancer ... but then again it wasn't going to happen to me.

When I was diagnosed with Stage IV, Metastatic Breast Cancer I began to look back.  All the diet fizzy drinks with aspartame, the plastic bottles that they came in, the chemicals I had used at work and at home, the plastic I kept food in, the carcinogens in personal care products, the list goes on.  For instance did you know that according to Dr David Servan-Schrieber one of the most toxic perfumes is called 'Poisin'?  I was never a big user of cosmetics or perfume, and I never gave much thought to my shower gel, shampoo, face cream because we are led to believe that they are moisturising, nourishing and cleansing our body, not adding carcinogens to soak through our skin into our bodies.  Well think again.  Many companies are not using these ingredients because they are the best, they are using them because they are cheap and can maximise company profits - and people and the environment be damned.  Worse still the government in this and many other countries know that some of these chemicals are hazardous to health and yet they don't butt in here either to ensure that at least the advertising could at least be honest.

One 'rule of thumb' is that the longer the list of ingredients in food or personal care products the more chemicals it contains.  I looked at the ingredients on the packaging of a chocolate croissant a few weeks ago and I could believe how many were listed, and how few I could pronounce.  Do you really need an air freshener to make your house smell nice?  Try some essential oils, open the windows.  After all lets face it, after a very short time none of us notice what out home environment smells like, air freshener or no ... ok there is the exception of the curry from last night and when exactly is that fishy aroma going to go away, but do you really need an artificial fragrance to cover it up?

Our immediate environment, at home at least, is something that we have control over.  We can ditch the plastic, the artifical sweetners, the foods with things you can't pronounce and get rid of personal care products that are carcinogenic ... but there again I was never supposed to be 'The Face Of Metastatic Breast Cancer'.

The Pink-Ness Monster

There are reports that attacks from the Pink-Ness Monster are imminent as it has been spotted lurking on the edge of October ready to pounce. She is large and, of course, pink and resembles a T-Rex as she is big, loud and has a very small head with a small brain which has focused in on only part of the cause that she is trying to represent. She has a liking for candy pink t-shirts with slogans about survivors and life after treatment, and also for pink feather boas and sparkly pink headwear.

She has several familiar’s who follow her around, and do her bidding. The doyenne of the pack, has a liking to be called by the formal title she had from her career in diplomacy. These are skills that she uses very well to present the ideas that the Pink-Ness Monster has become obsessed with. You see this particular familiar’s sister died of the disease they are trying to raise awareness of, but in the process she has focused so much on the awareness, she has forgotten what her sister died of.

The Pink-Ness Monster herself continues to blunder along in the same way that she has done for years, but she ignores the needs of those who need her the most; those less glamourous than them and without the time to get her to recognise just how much that they need her help too. This is partly because her head it so far up in the pluffy pink clouds, and she is so sure that she is right, that she just doesn’t hear. So if you see the Pink-Ness Monster have some pity for her misguided ways … but RUN and what ever you do THINK before you buy any of the products her followers sell in her name because even the Pink-Ness Monster doesn’t get all of the money and she spends it on silly things someti mes, like fluffy pink feather boas that make her feel good.

BBC is predicting sun!

Just had a peek at the BBC website to see what the weather forecast is for today.  I still have the curtains drawn because I still need the light on to be able to see what I am doing, and it is not easy to see what the day is going to be like.  The Beeb predicts sunshine virtually all day, but with the British weather being what it is, we all know how reliable a forecast can be...or should I say unreliable a forecast can be.

One of the things about the weather in the UK is that you learn to take the good with the bad and you learn to accept the bad and make the most of it.  This is not the country for planning a barbecue  much more than a few hours in advance, at least not without a Plan B, or even a Plan C, up your sleeve.  There have been some exceptions to this rule; the summer of 1976 being one of them when we actually had a drought during a long summer without rain.  This summer, for those of you who didn't watch the London 2012 Olympic Games, it has been cool, wet and windy.  Very British in fact to go with a summer of celebrating the Queen's Diamond Jubilee and a British man getting to the final of Wimbledon, as well as the Olympics.  It has actually been very wet but everyone has adapted and certainly parents have had their money's worth of wear from their children's wet weather gear.  And if you are a child?  I can sum that up in one work - puddles!  Splash!

Then there was the summer when I did my training dig as part of my archaeology degree, between the first and second years of the course which must be about 9 years ago now.  When we were out in a field in Dorset excavating in a field with no shade the UK had the highest tempretures ever recorded.  It was actually so hot that when we wheeled out the barrows of equipment in the morning over into the excavation field the tarmac on the road we had to cross was actually melting.  Those of us who were older and wiser (I was the oldest person on the course) came with sensible things like a big umbrella, 4 litres of water to drink a day and sun cream.  The 19 year olds?  The swigged down small bottles of Coke and wondered why they became dehydrated as they topped up their tans during the breaks.  At about twice their age I was surviving while they were wilting.

And what is the moral behind this rambling discourse on the British weather?

Be sensible and take what procautions you can to maintain your health, but remember that nothing goes to plan all the time so be prepared to adapt to what comes along.  Then when the perfect day does come along to surprise you, you will be able to fully enjoy and appreciate the perfection of the day.  Carpe Diem.

P.S. Spookily I have just checked my e-mail and I have had a Thought For The Day that I subscribe to arrive in my In-Box.

W

ithin each one of us there is a master of the universe. Not the universe out there but the inner universe of our thoughts and feelings, attitudes and actions. Most people realise too late what awaits within and how valuable it is. For too long we allow ourselves to be distracted and bewitched by all that is happening outside. To be the master of your inner world is to be the master of your own destiny. Are you going to be the master or a slave?

Stand Up 2 Cancer ... coming to the UK

Just had an e-mail from Cancer Research UK to publicise their collaboration with Channel 4 this October to bring the Stand Up 2 Cancer fundraiser to the UK.  The plus to this is that it is all about funding research.  The possible minus is how much of it will go towards funding research into metastatic disease?  And by that I mean any form of metastatic disease.  I once asked Cancer Research UK how much of their research budget they devoted to metastatic research and it turned out to be about 1%.  I cancelled my Direct Debit contribution to them and I haven't supported them since.  This is

• Outrageous
• Unacceptable
• Mind boggling
• Thought they were about finding a cure for cancer...but not the kind that kills it seems

Whilst I don't deny that early stage cancer should be researched, and ways found for the cancer not to metastasize (spread in the body from the original site) where is the help for those for whom cancer is declared to be incurable?  Great - raise awareness of the risks of getting cancer, and about early detection, but what about those for whom the cancer is declared to be incurable?

If the answer to my e-mail query is that they will be spending a fair proportion on metastatic research then I will support them, and possibly run some form of fundraising where I work.  If the answer is negative then I will not be able to support them.  Don't get me wrong I don't want to deny early stage cancer its share of the cake, but so far they haven't been sharing nice with metastatic disease.  They want their cake and eat it, and leave a few crumbs for those who are dying for their help.

This may sound like sour grapes and in some ways it is, but how frustrated would you be if you constantly read of advances in preventing cancer, advances in ways of stopping it spread, advances in understanding how cancer works but all of which does not translate into help for those who are dying for the help?  I have lived with metastatic breast cancer for 5 years (officially 4 years, 8 months but they got my initial diagnosis wrong) and there is discovery after discovery which never seems to see the light of day again.  Why?  Because it won't be profitable?  Since the government and public in the UK and elsewhere give a huge amount of financial backing to cancer research why aren't them making sure that it achieves something.  Where is the return for the tax-payer?  Why does so much of it get handed over to pharmaceutical companies to 'take and make' out of the research that the tax-payer has funded.  They 'take' the research which has been done and then 'make' out that it was all their idea and their Research and Development that brought this idea to fruition; on top of that they then want to 'make' big profits from something that the public has already funded and helped to develop - where is the return for the tax-payer I ask again?

I totally believe in companies making profits.  I believe in responsible Capitalism.  I am glad that there are companies which have the facilities, resources and scientific expertise to be able to produce medications to help those with a miriad of health problems, but I would like it more if the governments who fund the research would make sure that something monetary was fed-back to support more research.  Instead it seems to be handed over cheaply for corporate profiteers to use as they wish.

But some of us are dying for the lack of research to help us.

 

http://videos.med.wisc.edu/videos/940

http://www.hks.harvard.edu/m-rcbg/fellows/T_Christian_Study_Group/Session%203/Truth_about_Drug_Companies.pdf

Is there really a point in being alive?

I am seriously questioning that there is any real point in my being alive.  At work my line manager hasn't even been bothered to find me somewhere to work on a permanent basis, so I have no where to leave anything and have to carry it around with me when ever I leave the public room I have been permitted to work in.  This is now becoming a room for students to use, and lessons are being taught when I am trying to work, and so I have had to leave but have no where else to go.

Yesterday I went to the Post Office to send off a package and I parked just behind the disabled bays, which were full, for about 10 minutes tops but I displayed by Blue Badge disabled parking badge.  As I got back to the car the traffic warden was walking away having issued me with a £70 parking fine.

I no longer feel that it is worth making an effort to keep going.  This has been the straw that has broken this camel's back.  I will no longer even attempt to go into town and frequent the shops.  I will no longer make myself walk to the nearest supermarket because I need to get some exercise and also because weight bearing exercise is good for the bones, it is also good for the environment that I don't drive.  I no longer feel as though I would be able to attempt to go anywhere where there might be even the slightest parking problem for risk of getting a parking fine, and also the expense and waste of petrol to try and find somewhere to park.

I am so lonely and isolated ... what is the point?  Everyone is always too busy ... and I just don't think that life is worth living as I find it harder and harder to get around.  I just can't be bothered to try and motivate myself any more.

Some times you just have to laugh...

I was just reading an article in the comedy section of the Huffington Post.  http://www.huffingtonpost.com/2012/09/22/13-ironic-speak-english-signs_n_1906008.html?ncid=edlinkusaolp00000009

Ironic "Speak English" signs:










Here, they even underlined the mistake!












Is there an added irony to the quotation marks for speak English?





Mind you we all make typos every now and then, but you thought they would have checked before making signs, especially if they are complaining that English isn't being spoken, let alone spoken correctly.

Somehow this brings my aunt to mind!  Why I head you ask?  She went to university as a mature student at the end of the sixties and read English and Theology.  I still hate writing to her because she used to send my letters back with corrections.  I am still a bit paranoid about punctuation to this day.

Two peoples divided by a common language.  Winston Churchill was certainly right about that, but then his mother was American so he would have had first hand experience of the problem.  While this might sound as though I am gently mocking our American cousins (would I do that?) I can assure them that the English have similar problems with spelling.

I'll forget my head next.

I took a friend out for a meal on Saturday because it was her "21st" birthday so we went to the Housemartin and had a scrummy meal, and I treated myself to one of their mini-puddings, a chocolate mouse ... sorry mousse.  The car wasn't far from the door of the pub but I was a bit stiff so I took one walking pole with me and propped it in the corner when I sat down.  By the time we had finished and chatted for a while I was concentrating so much on the fact that the chair was a bit hard on my bum, and the car was by the door I managed to walk out, leaving the pole behind.  I didn't go out yesterday and I only realised when I had to walk some distance from the parking space to the blood test area in the local hospital that I was a pole short.

Luckily I have three sets of walking poles these days, one to keep at home, one in the car and one pair to keep at work.  I ended up with three because I once went away for a few days and left my poles behind and I had to get another pair, though I ended up getting two pairs as they were so cheap.  As I don't have a set place from which to work at the moment I have two sets of poles in the car so it wasn't too much of a problem.  The Housemartin just got back to me to say that they have my pole, which will be a good excuse to pop in for another chocolate mouse!

These days I use a stick, or two, when I walk any distance outside because I can be a bit unsteady on the old pins and it stops me looking like a drunk lurching around the place.  It is also a matter of confidence because there are days when I know that I will need them to get home.  At first it was difficult to admit that I needed a walking aid of some sort because, damn it, I'm only 52 years old!  When I look at what I used to be able to do ... but that was then, and this is now.  I could probably get one of those mobility scooters and scoot around town knocking children and the elderly flying in all directions, run over the paw of a dog or two and end up in the police station sober in charge of a scooter!  But I will save that for the future.  I have to have some ambitions left in life, something to look forward to.  Like waiting to be old enough to drive, but in my case old enough to scoot.

For me it is important that I still get out and walk because weight bearing exercise does actually help to strengthen my bones.  There is also some rather wonderful about being out on a lovely warm day with just the right amount of breeze and being able to watch the sky changing as the clouds form and reform into different shapes.  I even like the days when the sky goes a blueish gray and the wind comes up and you know that it is seriously thinking about raining.  Will I make it home in time?  Will the clouds get blown out to leave a blue sky?  Will I get wet.  I don't mind being out in the rain.  I am English, so I am used to this but if I am going to get wet I want to get properly wet and not just a bit damp.  Getting a bit damp leaves you with the quandry as to whether to change clothes when you get home, or will you dry out quite quickly ... decisions, decisions!

I also have a trusty Troll.  It is a pull along trolley which answers to the name of Troll who accompanies my on some of my trips into town.  I found I couldn't carry a heavy backpack any more, so this was another way of being able to do my shopping and being environmentally friendly whilst getting some exercise.  Troll anchors me nicely, but means that I can only use one pole.  Compromises have to be made to maintain my mobility and my independence, and it has the added bonus of being good for the environment.  An all round winner in my book.

I've just had a light bulb moment!

This is possibly not as amazing as it sounds.  I have finally managed to get round to changing the light bulb in my grandly named Office here at home.  The bulb was one of the early low energy ones and has lasted me 17 years with quite a lot of use as well.  With these types of bulbs however, they don't blow like the old type so you know you have to change it, this one has just been getting darker and darker; to the point where I need another light on to be able to see what I am typing or doing.  So here I was about 2.30pm and the thought just pinged into my mind so I thought I would just get on and do it.  The only problem is that it has taken me a while to remember where I put the new light bulbs because it has been so long since I have needed to change on.  So there was I standing on the landing with a blank look on my face (nothing too unusual there though) so I wandered around a bit and then it just came to me where they are.

My mind works like that a bit at the moment.  One minute a thought is there and the next minute I have blown it.  I am so good at this that I can do it mid-sentence, but this can be even more embarrassing when you realise that those you were talking to weren't really listening as they can't remember what you were saying either!  You know the feeling ... you go upstairs and by the time you are half way up you are already beginning to wonder why you are making the journey.  By the top it has complete escaped you and is on a plane bound for Australia because it is so long gone.  Never mind.  Go back down stairs and you might just remember what you have forgotten to remember.  I like to blame it on Chemo Brain, but I haven't really had that much chemo, and occasionally the memory comes to mind that I might just have been like this before I had any chemo.

Now if I can only remember what I am supposed to be doing now, I could have another light-bulb moment, or maybe I will just have a nap instead.

Disheartened

I have been awake since about 5am because I am so upset, annoyed and disheartened by an e-mail I received yesterday.  I had requested that someone sign a petition for more funding for metastatic breast cancer.  I interpreted her initial response as being that she could not sign because I had said that early stage breast cancer can be cured.  Her concept is that the impression that breast cancer can be cured should never be given because those with early stage might progress to become metastatic.

Yesterday I also had a newsletter from Cancer Research UK http://supportus.cancerresearchuk.org/PageFiles/666448/cancer-research-uk-annual-newsletter-2012.pdf about what has been happening in the research they have funded in the last year.  It states in this newsletter that sixty per cent of those diagnosed with breast cancer can expect to be alive in 20 years.  As someone with metastatic breast cancer my chances of being alive 10 years after diagnosis is 2%.  My chances of being alive 5 years after diagnosis is 20%, and my MBC diagnosis was 4 years and 8 months ago.

I really do wonder if it is worth trying to change things and get more funding is really worth it.  If early stage breast cancer survivors can't see beyond their won fears of a progression to see that what we are trying to do is take away some of that fear with the development of more effective treatments then how can we expect 'outsiders' to be able to understand.  Or maybe, because they are out side the breast cancer community they will be able to see more clearly that those who are dying are those with MBC, and those who have been diagnosed with ESBC stand a good chance of living a long time after their diagnosis and treatment.  Of course this is not perfect, but sh*t this is cancer we are talking about, not influenza.

Right now I can't see that the Pink people will ever want to understand or acknowledge us full, because they are scared.  It's a bit like when AIDS was first recognised and there was a general perception that you could contract the disease by touching someone with it.  They do seem to think that contact with us will contaminate them.  There are those ESBC survivors who support us which is so refreshing, but I feel that there aren't many of them. 

There is not a single person with breast cancer who wants them to be in 'our gang' and to have a total understanding of what it is like to be told that your stage of cancer is now incurable.  That is etched on my mind and is replayed, though not as much as it once was.  I can remember the feeling that my entire being was cold and tingly, and that I was slowly being sucked down into a form of hell to be lost forever.  We, of all people, don't want to take the hope and optimism from them, but if more was done to help us then maybe they would no longer live in as much fear.

The oppression of having to be 'Positive'.

Why, oh why, are people with cancer forced to feel that they have to be positive all the time.  It is as though just one negative thought will wipe out anything positive, whether that positive is from treatment, exercise, eating the right food, meditation and so on.  One negative thought flicks through your mind and it is all undone.  Rubbish.

Living with cancer, at any stage, is difficult enought, but to expect us all to be cheerful all the time ... where these people in the Spanish Inquisition in a former life?  Have a load of sh*t dumped on you AND expect you to be positive about it?  NO.

I had a bad weekend, if no one noticed from one of my other posts (!), but one thing I know is that every now and then I just have to let out the frustration, anger, fear, self-pity and all those other bad feelings or I will explode.  The one thing that I haven't quite mastered yet is to direct the released missile without damaging people, furniture, or more importantly Teddy Bears.  It just has to come out.  Usually I can use a cover story like a weepie movie, or something got in my eye to justify a few tears without dragging others into my mood.  After all it is my mood and I need to deal with it, and to be honest I am just as likely to be annoyed by someone's attempt at empathy as I am to be helped by it.  After all I am the only one who really knows how I feel right now, and right now I don't need to hear anyone say they understand.  That is not to say that in five minutes time saying that they understand how I feel won't be the right thing to say, but right now!

It takes time to learn how to reduce the stress and focus on exactly what I do have at the moment.  To remind myself that right this second I am safe, relatively well and I don't have much pain.  I have a roof over my head, and food and drink, heating, hot and cold running water ... what more do I really need in life?  Therein lies the rub ... life ... that four letter word again which can be tinged with irony, melancholy as well as the fact that I am still living and functioning.  This brings me back to this exact present moment when all is well.

You matter?

As some of you may have noticed I am not in the best frame of mind at the moment.  I guess I feel that my life is pretty pointless and that I just don't matter.

For instance I went back to work on Thursday to properly start my new post.  I found that I have no desk, no PC, no phone and no one is really interested.  My key card has been deleted so I can't get in any doors, though someone will possibly do something about it some time.  Eventually it was decided that I could be in a small office upstairs for a few weeks until the office where I am supposed to be based has been vacated, because no one thought it was necessary to make sure this was done, after all no one is interested and I don't matter.  So off I go upstairs to have a look once I had got hold of the key.  I found that the door was open and the room is stuffed with junk.  That really makes me feel as though I matter - not.  No one is interested.  A lot of people are so busy that they are totally stressed and have been reduced to tears by the usual mess up at the start of a new academic term, so as I could help at least take phone messages I volunteered to help.  No one was interested, and my former boss didn't think that it was a good idea that I help out some members of her team who have been working from 7.30am to 6pm, or longer!  One friend has been answering e-mails at home past midnight on a couple of days.  They have been told that they are not allowed to have food on their desks as they are out in the open plan part of the area, and then get told they should be answering their phones when they go into the back office to gobble down a sandwich, or make themselves a drink.  I am told I am not allowed to help out, and no one will give me somewhere to do my own job, or tell me what is going on.  Because I don't matter. 

In the end I just found a desk and started to take off phone messages and deal with them because no matter how p*ssed I am with the college where I work I am not prepared to sit around and watch people struggle when I can help out.  It was either that or go home!  Actually writing this down makes it even more astonishingly stupid.  I feel as though I am totally invisible there and it has totally reinforced the concept that they really don't want me there.  I have had to ask when I should return to work because they have reduced my hours and the number of weeks that I work so much I don't really have any spare days to waste.  I could go on about it all, but it only makes me angry.

As a result of this and being excluded from a group I mentioned in the last blog I have been really depressed because I feel so useless, invisible, unwanted.  I started a facebook group for metastatic breast cancer advocacy and I have left that because ... well what's the point?  The group that I am excluded on because of where I live is associated with the main forum that I have been a member of for over three years.  I no longer feel that I want to go there either, especially as they seem to be getting into bed with Big Pharma who are one of the main sponsors of the group that excludes me.  The pharmaceutical company is one that made the HRT tablets I was told to take after my hysterectomy in 2002, and which I was assured by my doctors would do me more good than harm despite my repeated mentioning of my mother having had breast cancer.  This company also makes cancer treatments, so they have the full circle sewn up.  Cause it and 'cure' it, or maybe not because we are now incurable.

However one friend did answer a post I had made and included a link to a TEDx video.  I love TED talks, and TEDx is the locally organised version under TED rules, so to speak.  Watch this an see if you still feel as though you don't matter, and also why you feel that you don't matter.

http://www.youtube.com/watch?v=7FHdHUzRnms

It has made me think and refocus on the fact - does it really matter that no one thinks that I matter, or have any importance?  Why am I wasting my time and energy feeling so depressed I have been crying and sleeping most of the last two days because I have no energy to do anything?  In fact _____ (fill in the word of your choice) you.  I do matter, maybe only to me, and I am not going to let them get me down.  I MATTER. 

Thanks Jo, love ya, hug ya, squeeze ya.  Vicki xxx

I am seriously p*ssed off today

I started a facebook group for other folks with Metastatic Breast Cancer as a think tank for ideas about advocating for, and bringing attention to, MBC.  Someone has posted about a new overarching website that is trying to bring the MBC sites together ... but ... and here is the kicker ... it is only open to US residents.  So if you are American and you live outside of the US you are excluded, or some people have lied about where they come from to become members.  Sod that!  If they don't want non-US residents I ain't going anywhere near it.

Anyway I realised at last that I am not really included in the American breast cancer world so I am out of there.  I have left the group and will give up on Inspire as well.  Why the hell am I wasting time trying to support other people who don't want me around because I am not one of them?????  The problem has always been that here in the UK the apathy is even worse.  I don't feel as though I belong to groups which are heavily skewed to The Pink Fluffy Survivor Thing and there are no MBC groups, except as hidden away corners of Pink Fluffy Survivor sites with it's endless rejoicing over being survivors and life after cancer, as though we are some sort of a failure just waiting to be a statistic that they can quote to get more donations.  It is as though there is nothing between being a survivor and a statistic!  YES THERE IS you bast*rds, and I am one of them.

I think I need to finish this now before I lose it completely.

Have A Nice Day  :O)

Back to work & lost friends

Ok, so I got to work as asked at 8.30am on Friday morning only to find that there is nothing for me to do until 1.30 when we have a full staff meeting, and then the statutory fire, health and safety training at the beginning of the new academic year.  Not only that but I have been told where my desk will be from now on, only to find that the previous occupants know nothing about the fact that they should be moving out of here to another building.  I feel a confrontation coming on and I may find myself somewhere else entirely.  Maybe I will end up in the other building which will make liasing with the folks I am supposed to be working with rather problematic as it is in another part of the village.

Added to that is the fact that the person I was supposed to be working with this year has decided not to accept the job because she wants something full-time.  So why apply for a part-time post?

I now don't have to go back until teaching starts on Thursday 6th September so I am trying to make the most of the last few days of the summer holidays but it is beginning to feel very autumnal.  Or maybe it is just my mood today.  I was trying to find out what had happened to some friends from a support group I belong to because I hadn't heard from them for a while.  I found obits for four of them, though one of them I knew was near her end after getting an e-mail from her a couple of months ago; she hadn't replied.

On-line support groups are very important to me because they are made up of other people who have the same disease and with whom you can connect on a very basic level - they just get it.  Too often they become only about the disease and the treatment options when, in my opinion, they should be about supporting the person and their life, and not just the disease.  Members go on there to rant and rave about the disease and its consequences but rarely do they post about the good things in life, unless they are good scan results.

I wish I had a support group of actual people in this area, but breast cancer support groups are about the smiling pink survivors and their wants and needs.  If you have metastatic breast cancer you are not included, at least not to fully participate.  After hearing several stories, and personally experienced how someone at the chemo clinic awkwardly ended a conversation because I said my cancer had spread, I wouldn't go anywhere near one.  I know they don't want to think about their cancer spreading, but what about a bit of compassion; and who knows if they actually got to know us they may realise that we still have lives worth living.  So much about metastatic disease goes straight from the diagnosis to end of life care!  There can be, and there are, years in between that can be happy and fulfilling.  So how about a bit of support for all of those years?

Petition for more research funding

I have started a petition calling for a fair share of the research funding to go to research into metastatic breast cancer.  I intend to send it to Cancer Research UK who once told me that they devoted about 1% of their £400m annual research budget to research into any kind of metastatic cancer and other organisations in the UK who fund breast cancer research.  As 30% of those who are diagnosed with breast cancer will progress to having metastatic, Stage IV breast cancer the research programme should have 30% devoted to metastatic disease.

http://www.ipetitions.com/petition/fair-research-funding-for-metastatic-breast-cancer/

Please sign it and pass it on; or pass it on even if you do not feel that you can sign it.

Finding treatments to deal with metastatic breast cancer will help not only those of us with this stage of the disease, but also those with early stage breast cancer because it will help to relieve the stress and fear of a progression of this disease.  It may also allow them to embrace and accept those of us with MBC which many of us feel is not the case at the moment.  We are their worst nightmare. 

I can understand the reluctance of the Pink Movement to acknowledge us.  We are not a part of the success story which is the image of breast cancer; not a part of the survivorship which is so celebrated as a corner stone of breast cancer.  There are so many people who think that it is a curable disease but many early stage patients know that there is a Stage IV which is incurable and is something to be dreaded and feared which in turn leads to our sense of isolation.  We are not failures.  We are simply living with breast cancer every day for the rest of our lives.  If you sign the petition it may help us to live longer.

My ambition is to be Pink

I know that it sounds a bit strange to want to be pink, even if it is my favourite colour, but I think that it is actually the ultimate ambition of all of us who have metastatic breast cancer to be completely accepted and welcomed as part of the Breast Cancer Community; as represented by the colour Pink.

The problem of being Pink, for me, is that it has come to represent survivorship and, through Pink Washing, the corporate greed of many companies and organisations who see the colour and its associations as a way of making profit whilst enhancing their image.  After all what are the risks for a big company to produce some pink products to sell in return for a small donation for each item sold?  Worst still there are companies which only tell the buyer in the very smallest of writing that there is a limit to the amount they will donate, but not to the number of items they will sell.  I make cards which I sell for £1.  I could pledge to give £100 to a charity and then sell 500 cards and keep the other £400 profit while advertising that I am selling them for charity.  Hmmm.

I want to be pink because I would like to feel accepted into a community which perports to represent all of those with breast cancer ... but it seems to be as long as you don't embarrass them by having metastatic BC which means you are unlikely to be a 'survivor', or worse still you are a male of the species with breast cancer.  If we think that as metavivors we are shunned by the Girls in Pink then what about the Boys in Blue?  You try finding support, information and acceptance into the community when you belong to the 'wrong' gender.  In part this is a problem that is not helped by men who don't want to 'come out' about their cancer; and it seems to also be part of the problem with getting more done for prostate cancer - all a bit embarrassing, don't you know, and real men don't talk about such things.

It may just be the impression that we get from the main BC community, and it may be only a minority who don't feel able to accept us but they are the minority that we seem to encounter when we are told not to say we have mets at a breast cancer 'support' group because we must not upset or scare the majority.  That is the minority that would not speak to someone who went to just such a 'support' group and after saying she had mets no one would talk to her.  She didn't go again - shock!  Possibly we are being over-sensitive because we really don't want to pierce their pink bubble of surviving and life after cancer.  We genuinely do want them to be survivors, we don't want them to join us, but we do want them to accept us and by accepting us to also support us.  Mets are not catching.  They may even see that we have a relatively 'normal' life.  Four and a half years after my mets diagnosis I still work for a living, I can still contribute to society, I am still a living person.  So while I live I still have ambitions, and one of them is to be Pink.

So what is happening on Metastatic Breast Cancer Awareness Day 2012?

I have been trying to find out what is happening for Metastatic Breast Cancer Awareness Day on 13 October 2012 in the United Kingdom.  The answer seems to be a big fat nothing.  The charity Breast Cancer Care did organise something for last year, but it all seems to have been forgotten, as though we have all gone away - i.e. died.  The small amount of effort that they did put in seems to have fizzled out and it is back to service as normal for Pinktober.  Pink ribbons and survivors.

Is anyone actually interested in our existence, except as a slogan for raising money for breast cancer charities and early-stage awareness?  'Over 11,000 people died of breast cancer in the UK last year' so give us your money so we can educated people about the symptoms of breast cancer and fund research into preventing the spread of breast cancer.  Just one problem with that - WHAT ABOUT THOSE OF US WHO ARE ALREADY STAGE IV?  Sorry to shout but for those 11,000 people finding a way to stop mets happening was just not much use; it has already happened and now they are dead.  What we need is an effective treatment or cure for the cancer when it has spread.  This is the type of cancer which kills, but the focus is all on the survivors who, on the whole, just don't want to acknowledge our existence because we are a reminder of what their future may be ... especially as there is no effective treatment or a cure.

So what will I be doing on 13 October?  I hope to be at the Macmillan Cancer Voices conference near London, and one of the sessions I hope to do is about advocacy.  The other is about campaigning for changes to my local NHS.  However, I have tried writing to the Daily Telegraph and the Daily Mail about MBCA Day but I have not had a reply, but I didn't really think they would take any notice of me.  I may try my more local papers; the good old Lymington Times, or the Southampton Echo to see if they are doing anything to support this day.  The real shame is that one thing that I have found is that it is very difficult to get people with MBC to be willing to support others with the disease.  Maybe it is just because I really don't have much of a life so I am interested in helping others deal with all of this and trying to get information, advice and guidance to others.  So maybe it is me who ought to give up and accept that a lot of other folks just aren't interested?

Treatment day.

Treatment day today so it was off to Oakhaven Hospice to have my i.v. infusion of Zoledronic Acid )aka Zometa).  I have been having this every four weeks since February 2008, except for a few months at the beginning of this year because of my hip replacement surgery.  In many ways my life revolves around these treatments, and it was the reason I had to get home at the beginning of the week, blood test on Tuesday, treatment on Wednesday.  The infusion only takes about 15 minutes to go through, but in total I was there about 45 minutes to give time for the canula to be put in, saline put through to flush my veins before and after the medication is put through, and of course removal of the canula.

This is the third treatment that I have had at Oakhaven and it is soooo much nicer than having to go in to Southampton General Hospital and see the oncologist and then wait and hope that my treatment came through somewhere near on time a couple of hours after seeing him.  At the moment I only need to see the oncologist every three months and have the treatments done locally to me.

Some people think that a Hospice is to be avoided at all costs because they are all about the very end of life, however this is only a part of their function within the community that they serve; but a Hospice is about so much more.  I have used their facilities before, and my first contact was when I was going through a very difficult time and I had reached the point of considering suicide because I thought there was absolutely no hope that I could have a life worth living.

A metastatic cancer diagnosis is not an automatic and immediate death sentence, but I was given no encouragement to be able to think any other way.  I think it was the help from the counsellor at Oakhaven and sheer cussed detemination, combined with finding Jane Plant's book ' Your Life In Your Hands' and Bernie Seigal's 'Love, Medicine and Miracles' that finally allowed me to see that there was a way through the 'fog of war' and into the fresh light of a new and another day.  It was a long and painful journey and the Hospice really supported me and helped me deal with my situation because that is why they are there.  We do not die until the second we die and the brain stops functioning and they know that.  They are about making the most of what an individual has so that we can live life as full as possible for as long as possible.  That is one reason I like to go there for my treatments, the Hospice has more life to it than the Hospital.

Visiting the past

I made it to Hardwick Hall today, as you can see from the photo.  It sits high on a hill with command views all around and thanks to the Cavendish's preferring Chatsworth House a few miles away it is almost unaltered from the time of the woman who had it constructed in the late 16th century, Bess of Hardwick.  In an age where women were ususally nothing more than the chattel of first their father and brothers, and then their husbands (Bess had 4) she became a woman of position, influence and wealth.  She wasn't born to this power, but to an obscure local squire and she aquired her position through a series of marriages.  The house has the tapestries that would have hung in a great house to cover the walls before wallpaper became the vogue, though their colours have faded it still makes quite an impact.  The floors are the orginal concrete and covered with rush matting, just as they would have been strewn with rushes and scented herbs when Bess lived there.  It is possible to imagine her taking her exercise along the great gallery on wet or cold days, or just walking up and down mulling over a problem.  The last person to live in the house was Audrey, Dowager Duchess of Devonshire who was widowed in about 1938 and lived then on and off until her death in 1960.  The house now belongs to the National Trust.

The Tudor period is one of the most interesting and evocative periods.  It was a time when women ruled the country through the turbulence of the Reformation, Mary's attempt to return the country to the Roman Catholic religion, and then the remarkable age of Elizabeth I.  An age when England changed more that it had in the previous 500 years, and an age which must have challenged all those who lived through it and the religious upheaval.  To remain catholic?  Become Protestant?  A Puritan?  Extremes of views that Elizabeth tried to pick her way through to maintain peace.  Two remarkable women with the same name during the same age.

Finding a path to follow for yourself is never easy, and for me it has been a constant challenge to be able to find a direction to go in.  The last few years have forced me to really focus on the way I want to go.  It is not something that anyone would ask for, but it can also be very instructive to have to focus on the here and how; to have to make decisions; to have to let go of many things in order to be able to get a grip on the reality of the present.  I can no longer just drift through life.  There are things I want to do and I now have to just get on and do them.  Visiting Hardwick Hall was one of those things that I can now mark off my 'bucket list' and I think the memory of it will stay with me for a long time.

Lazy days and cold baked beans

I am having a lazy day today.  I have just run out of energy, and as it is raining outside I decided to go back to bed and get some rest.  I like these kinds of days when I can just take it easy and not worry about what is going on outside the door.  It means that I can snuggle up and do some reading, or blogging.  It also means that as I am not going back to the Little Chef next door after the dreadful meal last night I can sit and eat a can of cold baked beans.

I love cold, organic, baked beans.  I never bother to cook them because they are so much nicer cold that I realised that I was eating a lot of them before they heated up, so why not be more envionmentally friendly, not to mention thrifty, and cut out the electricity all together.  It is like custard.  One of my favourite meals is cold soya custard straight from the box.  I have even been known to take either of these to work for my lunch if I don't have the time, or the energy, to make a salad for lunch, or the cash to buy a sandwich once I am there. 

Maybe the attraction is also that I don't have that much enthusiasm to cook these days and my relationship to food has become somewhat problematic.  If you could see me you would know that I am overweight, but that never seems to change even when I go through periods of not eating very much, which I did a couple of months ago when I became very depressed and almost stopped eating all together.  I know that this is no way to lose weight anyway, but I have other things to worry about these days.  It is more a matter of nourishment and when I go back to work next month I will have strange working hours of 2 - 7pm.  I don't like it, but I really had no other choice unless it was to give up work entirely, then I would be on my own for 99% of the week which is not good.  So I am going to have to find a new pattern of eating, and maybe using my slow cooker could be an answer.  Chuck it all in and leave it to cook while I am out, and then I can eat as soon as I get home.

Nourishment is such an important part of my approach to living with cancer.  Getting the right nourishment that is, but I have ceased to fret about it if it doesn't always go to plan.  At the moment I am away from home and without refridgeration at a relatively warmer time of year.  Therefore I can't really stack up on those foods that need to be stored in a cool environment because I just don't have access to those conditions.  Also if you eat out there are limitations on what I feel comfortable about eating, partly because I don't know the source of the food and how it has been grown and produced.  I prefer organic produce, especially on the odd occasions that I eat meat, which is usually white meat anyway.  I don't want the growth hormones, antibiotic residues and the junk food that animals are fed these days to make them grow quicker, be 'healthier' and cheaper to raise.  The same with vegetables, I don't want the pesticides, herbicides and artificial fertilizers that are used to grow tasteless, bland and nutrient free food.  What the hell has happened to our food?  Instead to feeding and nourishing us it is starting to kill us, and that is before they start to process the stuff.

Wow!  Getting off soap box and putting it away neatly, and environmentally.  But seriously folks, we all share the same planet and we are destroying it at a rate that should make your head spin if you thought about it too much.  There are people starving when other areas of the world have a glut of food and just don't get me started on the bees!

Four years ... where has the time gone?

I did a big trip around England four years ago, at about this time of year.  It was the summer after my metastatic diagnosis, and it was supposed to be the last summer I would have to be able to get out and visit some of the places I had always wanted to go to.  It was one of those Bucket List types of thing so I could mark off some of those 'things to do' ...

Well four years later I have revisited one place which was a highlight of that trip, Southwell Cathedral.  It hasn't been a cathedral very long, only since 1884, but it was a Minster before that and the parish church of a small town on the edge of Sherwood Forest.  It was a revelation.  Somewhere that I had hardly heard of, and which I nearly didn't go to because I was trying to pack so much into that trip.  It is a gem, and the carving in the Chapter House is superb.  http://en.wikipedia.org/wiki/File:Southwell_minster_028.JPG  It was so special to be able to visit it again.  The organist was practicing while I was there.  I love the sound of sacred music in a sacred space such as a great church because it seems to be so timeless.  It is even better if there are not too many people around to break the spell of what it must once have been like in such a place.

I took my aunt back to the village where she was born and brought up in the Cotswolds last week.  She thinks that it may be the last time she will be able to revisit the place where she spent such a happy childhood.  I know the feeling.  There have been many times when I have wondered if I would pass this way again, but I no longer find it difficult to think in such terms.  Does it really matter if I never come this way again?  After all familiarity breeds contempt, or so the saying goes.  Nothing can compare to that first moment, the excitement of seeing something for the first time.  These are the images that say in my mind, though sometimes they are also preserved in a photo like the view of the north Devon coast near Lynton that I have as my screen saver at work.  It takes me to that warm summer day with a cooling breeze and looking at the waters of the Bristol channel and the ling casting a purple haze on the ground.  I may not return but I have brought it with me.

It is coming up to the five year mark of my breast cancer diagnosis.  It is further than I even thought I would get, and the best thing is that the journey is continuing.

Days when I get tired of breast cancer

There are days when I just get fed-up with breast cancer.  When I wish that I could do the things I used to be able to do.  I wish I could walk faster; have more energy; not have that feeling that I will never see something again; that I could just do more.

Although I saw the things that I wanted to see in Cambridge today I wasn't really able to just wander around like I used to be able to do.  To spend hours in a museum getting lost in the exhibits and not having to think about walking up the stairs, or just knowing that I need to keep going because standing still is causing me problems.  For instance I had a moment of panic when I was trying to find the car park where I had left Kermit (my car is bright green and reminds me of a frog ... hence Kermit) and as it was late and I was tired I was beginning to wonder if I would find it, and how much energy it might take if I had to walk along another road to find the entrance.  In the end I didn't have to go too far, but that worry is there when I go somewhere I don't know.  But in the end I am not going to let it stop me from doing the things that I want to do.  To see places that I have never seen before; after all I have a very long bucket list.

Sometime I just straight out wish that this damned disease would just get on with it and kill me off, but that is where the stubborn Vicki comes out of the woodwork and refuses to allow that to happen.  It is fast approaching 5 years since my diagnosis of breast cancer, and in January it will be five years since they finally recognised that my cancer was Stage IV.  Maybe one of the reasons that I enjoyed the Olympics so much is that I recognise the determination, dedication and self belief that it takes to succeed when they tell you that something just can't be achieved.  When I first looked at the stats for survival with Stage IV BC I didn't think that I would make it to Christmas ... but I'm still standing.  I'm even wondering if I should start saving to go to the next Olympics in Rio!

London 2012

I have to admit that the Olympics were amazing, and to think that Team GB finished third is stunning.  I think it was at Atlanta in 1996 that we got 1 Gold and a total of about 7 medals.  Not that it really matters where we finished in the medal table because it is the taking part that really matters. Just goes to show what we can do when we set our mind to it and just get on with it.  I just wish I had been able to actually go to an event, I think I would have enjoyed the rowing from Eton Dorney or the equestrian events but never mind - you get a better view on the TV anyway.

Critisisms?  Tickets were a bit of a mess and the BBC commentators did whitter on a bit too much and got a bit too excited by the Team GB successes but we haven't done this well in over 100 years ... so wait an Olympics or two and it will be back to normal service.

Everyone seems to have really enjoyed themselves.  Some of the students from the college where I work were volunteering at the hockey events and I bet they had the time of their lives.

They having been going on about the legacy of the Games.  One legacy which I hope will continue is in volunteering for various things, and that youngsters will see it as a worthwhile thing to do.  I just hope that organisations will open up to those who come forward because sometimes volunteering seems to be a bit of a closed shop as far as those who run them are concerned.  They should be open to new volunteers and new ways of doing things.

Will there be a real sporting legacy?  I hope so, but the Health and Safety Tzars need to ease up a bit so that people can get involved.  For too long the ideology that competition is bad has held sway in schools.  It is still possible to win and lose without it being a negative thing.

I am at Ely in Cambridgeshire at the moment and on the way up here I went past Stoke Mandeville Hospital which was where the paralympics started.  I bet those who have gone through the Stoke Mandeville experience don't see winning and losing as being negative.  None of us wins all the time and we all have setbacks, but that doesn't mean that we stop trying.  I think we just find a new way of winning.  I spent today in Cambridge wandering around the city.  These days I am slow on my feet and I need walking poles to help me get round, but I managed to see the things I really wanted to see.  I saw a wonderful exhibition at the Fitzwilliam Museum 'The Search For Immortality, tomb treasures of Han China.  I went round King's College and had a look at the chapel and the grounds as well as having a wander around the town.  I am fine if I keep moving, slowly but surely and today I achieved all the things that I wanted to achieve.

Yesterday I spent in Ely itself and spent a few hours in the cathedral on a quiet day.  Tomorrow?  I'm not sure, but I am getting the things I want to do done, which is the important thing.  They are not important in the grand scheme of things, but they are important to me.