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?