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.