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Tuesday, 30 October 2012

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.

Monday, 29 October 2012

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!

Saturday, 27 October 2012

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 ...

Friday, 26 October 2012

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 ...

Thursday, 25 October 2012

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 ...

Saturday, 20 October 2012

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:
ClusterOutlookCopy number defectsComparisons and other notes
1IntermediateChromosome 17‘Luminal B’-like, generally ER+
2Poor2 x faults on chromosome 11Mixture of luminal A&B
3GoodVery few‘Luminal A’-like
4GoodVery few, mainly immune system genesHigh levels of immune cells in tumour
5Extremely poorChromosome 17 (Her2 gene)Mixture of ‘Luminal B’ and ‘Her2’
6IntermediateRegion of chromosome 8 deletedER+, generally Luminal
7GoodChromosome 16Luminal A
8GoodChromosomes 1 & 16Luminal A
9IntermediateCh 8 and/or 20Luminal/ER+
10Poor 5-year outcome; good long-term outcome if alive at 5 yearsChrs 5, 8, 10 and 12Basal-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...

Friday, 5 October 2012

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'.