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Sunday, 30 October 2011

Research funding from Pink Ribbons

Through a friend from an America forum I have read a blog page which really sums up so much of what those of us with metastatic breast cancer think and feel about the way that we are forgotten in the Pinkness of breast cancer, the fluffiness of breast cancer, the survivability of breast cancer. For those of us who have Stage IV cancer the only definition of being cured it that you die of something else! They are not trying to cure me, but providing palliative care to ease symptoms. Then they wonder why so many of us have depression and find the process of coming to terms with this diagnosis is so difficult because they give us no hope.

If you look at all the research that makes the headlines, and even those that doesn't but which some of us search out from medical newsletters and the web, it is all about prevention and stopping BC spreading. About 30% of those who are diagnosed with early stage BC will end up with mets, but BC is projected as being curable to the general public, and some young women think that is a way to get a free boob job! Ladies, think again. This disease KILLS.

The research into preventing mets is often focused on pharmaceutical medicines rather than using diet and nutrition and lifestyle as a way of preventing this. Cancer patients are just not told about this approach, unless they are really lucky to have an oncologist with an open mind. Many people with MBC only seem to want to use conventional medicine which is toxic to the whole body and not just the cancer. We all need to take some responsibility for ourselves. None of us intended to get cancer, but there are so many different things that cause it to happen that we have to do everything we can to help our body work against the cancer. There are many things we cannot alter, but there are many things that we can, we can stop storing food in plastic containers, stop eating processed junk (also known as convenience food) and go organic, give up dairy and red meat which are full of hormones and growth factors just as a starter. Then we have to do what we feel comfortable with. I take supplements, eat organic food whenever possible, gave up dairy and red meat, try to do weight bearing exercise to strengthen my bones and have given up wearing perfume and try to use personal care products without parabens etc.

‎'No one actually survives metastatic breast cancer' - You can live with it, and many of us are, but they tell us it can't be cured. Cancer Research UK once told me that they use 4% of their research budget on any form of metastatic cancer research. WHAT? They raise money based on people dying of cancer then ignore the type of cancer which causes 90% of those deaths. We are ignored by doctors until it is too late as we don't fit the profile (too young, etc.) then just tell me they will only give us palliative care and that this will be the cause of my death. If 90% of cancer deaths are caused my metastatic disease why do we get 4% of the research funding?

Read the blog at:

Friday, 28 October 2011

Big Business and politicians - do they know right from wrong?

I have the BBC as my homepage and one of the top stories this morning was this 'Directors' pay rose 50% in past year'.

What planet are these people on?  It is like the Liam Fox resignation debacle a week or so ago - WHY DO THEY THINK THEY CAN GO ON DOING THIS?  Do the bosses and the politicians really think that they can just go on with 'business as usual'? 

Responsibility.  This is a word that seems to have been forgotten, along with empathy, respect and consideration, and all those other 'old-fashioned' things that gave society a sense of cohesion, such as:
  • Simple things like holding a door open for someone 
  • Gratitide for what you do have, rather than bemoaning what you don't have
  • Doing things for others without expectation of reward
  • Making do with what you have, not endlessly wanting more
  • Being kind to the environment in the knowledge that we share this planet, not own it
  • Having ethics in business - it is not all about making money
  • Working hard and putting effort into your job
  • Loyalty
I could go on, but what would be the point?  It will just depress me.  Those at the top are fast becoming the scum of the earth with a greed that knows no bounds, and a contempt for the consumer and the voter.  Does anyone in politics really believe in anything any more?  Can they tell the truth?  Can they keep their word?  Have any of them even had a real job?

Thursday, 27 October 2011

My problems are as nothing compared to what some have survived

We can all tend to get lost in our own world and forget the terrible experience and horrors that others have been through, and which make our experience pale into insignificance. How easy to become bitter after the experience of being caught up in the Holocaust and seeing how low humanity can sink, but one survivor has given us something that is truly inspiring; a vision of how we should all try to approach what life throws at us.

The Gift of Choice   -   By Gertrude Hildreth Housman

I came into this world without being asked

And when the time for dying comes

I shall not be consulted

But between the boundaries of birth and death

Lies the Dominion of Choice

To be a doer or a dreamer

To be a lifter or a leaner

To speak out or remain silent

To extend a hand in friendship

Or to look the other way

To feel the suffering of others

Or to be callous and insensitive

These are the choices

It is in the choosing

That my measure as a person

Is Determined

Things to help when you are feeling down

I went on a Wellness and Wellbeing day course at the Penny Brohn Cancer Care centre a while ago and bought a copy of their book The Bristol Approach to Living with Cancer. For some reason I went to the back page where they have a list of suggestions for the down days.

The last suggestion is to have a Rainy Day Box, a shoe box will do, and keep in it your:

 favourite music

 relaxation CDs

 humourous books or DVDs that can always be relied on to lift your mood

 a favourite food treat

 letters or cards that you enjoy reading to support you

 favourite quotations

This is such a simple idea, but is one that could have such a huge impact. When I get down I don't always know where to go for things to help inspire me again, so to have them all in one place is a great idea. However, in all honesty, I don't think the food treat would be there most of the time as I would have decided to have it even on a sunny day!

By coincidence I was given a Memories box and I was wondering what I could do with it as memories also have a negative feeling about them, but things to inspire and comfort is a much better idea. I think I will give it a try, and maybe putting it together will also be a comfort and support.  More of a Making Memories box perhaps?

If music be the food of healing, play on...

It may sound obvious, but I wonder how many of us actually use music as part of our daily practice to reduce stress. Evidently 30 trials with cancer patients have shown that music can help to heal cancer patients as well as helping the patient to control pain.  I don't like to take strong painkillers, though I am forced to give in sometimes just to get some sleep or rest, as I prefer to use mind over matter and breathing techniques to control pain; and to be honest I am just so used to it I tend not to focus on it much, it is just there.  But there are times when it is good to remind myself to correct my posture and focus on releasing the pain and tension through concentrating on my breathing for a while and bringing myself back to the present moment.

I know that I don't listen to music enough these days as I gave my small music centre which I had in my 'office' to my aunt when her music centre CD stopped working. I can play the radio over the internet but I seldom think to do so.

Where I do use music is when I go to hospital for a treatment and I listen to some relaxing music, or a guided meditation while I have the treatment. That way I can take myself to some beautiful places far away from the dark, grim hole that is the chemo clinic at Southampton General Hospital; windowless and soulless. When I walk into down (ok shuffle on my Nordic poles) I also play music on my MP3 player and at times it can be really magical walking along looking at a beautiful blue sky with puffy white cotton ball clouds and listening to Vaughan Williams 'Lark Ascending'.

I have just turned on my little dock for my MP3 player to listen to some music, but it is not only music that can really lift my mood. I also have some downloads of ambient sounds of Forest and Farm sounds which can be really relaxing; listening to the birds and the sounds of trees rustling as well as farm animals. You can get them on Amazon (other downloaders are available) for about 80pence and some of them last for an hour, which is really good value. Also you can listen to a sample before you buy so you can decide whether it is your 'thing' or not. Right now I have the Ambient Farm Sounds and some music playing so it is rather like an outdoor concert!

Monday, 24 October 2011

Orthopaedic news

I managed to find my way to the orthopaedic at the Royal Bournemouth General Hospital on Thursday.  Was called in to see the surgeon about 20 mins late and after a brief chat I was sent off for another x-ray of my left hip as the scans and x-ray that I had done a couple of months ago had not been sent through.  I had written copies of the reports, but he wanted to assess the state of my hip and make sure that the problem is only caused by osteoarthritis and not bone mets.  Evidently that dictates which technique they will be using for the hip replacement, whether they can use ceramic or have to use a kind of cement to hold it together, as they did when my right hip was replaced.

The wait for the x-ray was about 30 mins, then I booked back in to the orthopaedics out-patients and was called in to see the surgeon again.  He said that they could offer me an injection but that would only last a few weeks or months and then I would be back to my present state.  If it wasn't for my Stage IV diagnosis I would probably go for this option as it would delay the need for a hip replacement.  However, I don't potentially have a long life expectancy so I won't have to worry about the need for a replacement of the replacement, so I am just going to go for the other option of a hip replacement.  I am down to have it anytime, and I am prepared to be called in at short notice so I will be packing a bag so I will be ready to go.  I was able to have part of the pre-op procedure done while I was there, with a form to fill in and a "beautiful" ECG which is good to hear.  I gave them a copy of my print out of the blood test results that I had done on Monday 17th to save my poor little veins.  I will have to go back for more pre-op but at least I am on the way.

I got home today after spending the weekend at Eastbourne and I have been doing way too much walking.  I didn't get much sleep last night because of the pain in my hip and sleeping on a harder mattress; and that despite taking some co-codamol.  I have thrown caution to the wind today at did some walking near Beachy Head, and stopped at Chichester on the way home and had a look around the cathedral.

Sunday, 23 October 2011

Oh I do like to be beside the seaside...

Greetings from sunny Eastbourne in West Sussex, the London and County Pub on Terminus Road to be exact.  It is a Wetherspoon pub and so has Wi-Fi.  I have just enjoyed a Portobello mushroom, chickpea and pumpkin seed roast and am finishing off a mug of rather strange Green Tea.  Have netbook, will travel.

I am having a veg out day after spending yesterday at Battle and paying my respects to Harold at the site where he fell in the Battle of Hastings in 1066.  William the Bastard (or the Conqueror) founded an abbey on the site of the battle and a town grew up around it, surprisingly called Battle!  Luckily the battlefield is not too big and I am very pleased with myself as my Nordic walking poles and I managed to make it round the battlefield, though at one stage I was beginning to wonder how many more rough steps there would be, and I really was beginning to think I had made a huge mistake.  It was a really lovely sunny, crisp October day and only 8 days after the 945th anniversary of the battle.  There were still flowers around the site of the High Altar of the Abbey which is the traditional site of where Harold fell.  Actually being at a site really gives you a feeling of what it must have been like, especially going down, and then up, the hill which had been flattened to may way for the Abbey anyway.

I am not exactly a Bucket List person.  I don't have anything written down, and I don't necessarily have a priority list either, just when the opportunity comes along I make sure I use that opportunity, rather than letting it pass.  1066 is possibly the most momentous date in English history, as it meant a sudden change in the entire power structure of the country.  So maybe for me cancer is my 1066.  Nothing will ever be the same again, and I know that I am a very different person today than I was when I was diagnosed 4 years ago.  When something like that happens there is no way that you can go back to the way things were.  You cannot undo the moment of victory that the cancer had, the scars from the battle that proved it has such power, but at the same time you do not have to capitulate and give in.  If you can find a way of connecting to yourself and what you really need in life then ultimately you are the winner.  For me the things that I need are fairly simple as life is lived in each individual moment and by definition they are ordinary minutes, but minutes that have meaning.  Life for most of us are not made up of moments of fame; most of us will never make it to 5 minutes, let along 15 minutes of fame but to be honest that is fine with me.  Looking out over the English Channel, which is right outside the hotel where I am staying, and seeing the sun and the waves is more than enough to make a special moment for me.

Wednesday, 19 October 2011

At last, an orthopaedic appointment

Eight weeks after my oncologist agreed to write a referral for the problems with my left hip I now have an appointment tomorrow morning at 9.20 at the Royal Bournemouth General Hospital.  It might have been quicker if my GPs surgery hadn't just scanned the oncologist's letter and the scan and x-ray results and done nothing about it for 5 weeks; four weeks because it had never been read, and one week waiting for my GP to be at the surgery.  Five weeks despite the oncologist mentioning the impact this has been having on my quality of life, my limited life expectancy, and asking this to be done as a matter of urgency.  But then my GP is the queen of 'come back when things get worse' - pardon?  HOW much worse?

Anyway, I have to admit that I am a little nervous about tomorrow.  I don't know the RBGH at all, though I drove past it nearly everyday during the three years I was at Bournemouth University 2002 - 2005, but I am hoping that the experience will be so much better that Southampton General Hospital.  I get stressed out even thinking about that place and yesterday ended up spending 7 hours there waiting for a 10 minute slot to see the oncologist and 30 minutes to have an infusion of Zoledronic Acid (Zometa).  Not only were things already chaotic, but the oncologist forgot to send through the prescription for the treatment, which wasn't realised until 5 hours after I had seen him!  Grrrr.  I can feel the blood pressure rising.

I need to be able to approach a new hospital as a totally new experience and leave behind the negativity that I feel for Southampton.  I am also thinking about changing my GP so I can have a completely new medical team, and if I like Bournemouth I might move my cancer treatment there.  Not sure what the facilities are like at Bournemouth, or whether I would still have to go to Southampton for some things.  I don't have anyone to go with me which might have been a good idea, but after waiting so long I was not going to pass on such a quick appointment.  I only get the letter from Bournemouth when I got home from work on Monday evening; I phoned yesterday when I finally made it from the hospital and now I have an appointment for tomorrow.  So wish me luck, and I will be taking a Teddy for support as well as a book for the wait.

Sunday, 16 October 2011

Metastatic Breast Cancer Awareness Day - 13 October 2011

Will this day make a blind bit of difference?  Is anyone really interested in trying to find ways of helping those of us with this cancer to live longer and better lives?  I have become cynical enough to think not.

One problem is the inability of the medical profession to think outside the box.  This article shows just what I mean. Oncology Professor father thinks that his son's use of alternative treatments is hog wash, but they are working for him at the moment and without the dreadful side effects of conventional treatment.  But for the medical profession they are not proven to be effective because there haven't been trials.  What about the trials that have bought and paid for my the pharmaceutical companies to show that their products work?  How accurate are these and what do they actually prove?  Or are they just a marketing tool to push product?

Cancer charities attitude to secondary cancer.

I got home late last night after two days at the Macmillan cancer voices conference at the Hilton London Gatwick hotel.  I feel a mixture of huge enthusiasm and sadness that the conference is so much about survivors and what happens after cancer treatment.

If anyone has actually read this blog, or noticed the title, I have Stage IV breast cancer - this is considered incurable and my hospital is only giving me palliative treatment with a view to easing symptons.  My cancer is ER+ and HER2+ which is supposed to be one of the more agressive forms and the average survival after diagnosis is 3 years.  I was diagnosed in September 2007, although they didn't finally 'discover' that I had mets all along in January 2008 (so try listening to the patient...) when I was 47 years old.

Cancer charities raise money on the back of people like me, and by using the fact that so many thousands of people are dying of cancers of all kinds.  When they get the money what do they spend it on?  Admin, prevention, education, raising awareness, research to prevent cancer and stopping it spreading in the first place.  But what about us, the people whose cancer has spread and are considered to be incurable?  How big a bite of the cherry do we get?  A couple of years ago I asked Cancer Research UK, one of the biggest cancer research charities in the world, just how much of the £100,000,000 a year they invest in research was send on researching metastatic cancer; the kind of cancer that kills.  The answer?  4%.  Yes you did read it correctly.  FOUR percent.  That is not much of a bite, and when it is it a bit of the pit, not the juicy flesh.  This is actually about the average anywhere in the world.

There were times at the conference I really wanted to shout out about this.  What about the people who are likely to die from this disease?  Why is everything seemingly about supporting people in their cancer journey and 'after' their treatment.  I have a 2% chance of being alive in 6 years time.  Anyone who thinks that these are good odds please raise your hands I don't think they are too great either.

Not one of us who are Stage IV want to burst anyone's bubble of confidence that they will survive, but we also should not be ignored and not spoken about in hushed tones.  At one of the workshops a lady asked what secondary cancer was and I had to explain to her.  It turned out that she was about to start working for Macmillan, a cancer support charity which is 100 years old this year, and she had no idea what secondary cancer is.

The enthusiasm came from some of the grass roots initiatives that they are trying to start up of support being available in local communities to help with taking people to hospital and doing shopping, gardening etc.  Sounds like a really great idea, but a massive task.  I know that there are changes going on concerning the website and their search for volunteering opportunities doesn't seem to be working at the moment so I can't have a look at what they have going on around here at the moment.  The trouble is that a lot of these things are based in cities and not small towns.

Monday, 10 October 2011

Making some progress with getting sorted

I finally got round to asking a neighbour, who is also a professional gardener, if they would give me a quote for clearing my front garden.  It has been pretty deserted for about 9 years now and is a complete mess with small trees growing in the lawn.  It would be so great to feel as though I have a bit of control over at least that part of my world.  I just want it cleared and a new lawn laid as I should be able to manage to mow that if I get a decent mower.  The lawn area wouldn't be too big either.

If I finally start to get that sorted out then I would have to get around to sorting out some of the other things that seem to evade my attempts at control.  I seem to endlessly move things around, and although I do have occasional throw outs it never seems to have much of an impact.

Of course one of the problems is that I feel guilty about getting rid of things, especially having been raised by parents who seemed to have the motto of "keep it, it might come in useful".  I have been slowly weeding things out and taking books down to the Community Centre in the town, or to the local Oxfam shop which specialises in books; and I did make a long list to sell on Amazon, but I got no further with that.  I don't really want to let them go.

I do feel that getting rid of clutter is quite liberating, but I also look at it from an environmental standpoint at well.  These things should be reused, but who would want my old stuff.  With clothes, at least, a charity can sell them for rags if they are not good enough to sell as an item of clothing and I would much rather things were used again than go to landfill.  I can be a rather obsessive recycler at home, and I also end up redirecting rubbish at work if it can be recycled.  I have even been known to bring it home to put in my own recycling bin.

Humans have had such an enormous impact on the world.  What people think of as being a natural landscape has most often been influenced or created by humans.  There is no where in Britain that is really natural, and the area that I live in is completely formed by human use, and over use, of the land.  Why do people think that they have the right to continue to abuse this planet?  Do we really need a lot of the things that we have.  Do we really need a lot of the things we want.  For me life should be about having the things you need, and occasionally having the things that you want.  I still have the 'fridge that my parents bought around the time my older brother was born and furniture my father owned in the 1920's and 1930's.  I have photos of houses he had decades before I was born and I still have some of those pieces.  I don't need this year's in colour for a sofa after all; and let's face it a 1950's style 'fridge is actually very fashionable.  Keep it long enough and it will come back into vogue.

Thursday, 6 October 2011

Time ...

I was just browsing something to do with metastatic breast cancer and somehow I ended up looking at some videos on YouTube that Michelle Ann posted.  I had to give up looking at them because they made me sad as Michelle Ann was a friend through a forum and she died a few weeks ago of this disease. 

How long before I become one of the statistics of breast cancer?

Sometimes I wonder if I am fooling myself by thinking that I could have a future.  I am not sure where it is, and I am not sure that I really want to know where life is going to take me.  Some people crave fame, travel, excitement and wealth.  Personally I am content to just bumble along in life and concentrating on the little things; the little moments.  I have pretty much everything that I want at this point in my life, though these are not the things I dreamed of having.  I wanted to be married, have children but these are things that will never be and over time I have come to accept this.  Why waste your life hankering after something that you can never have?

Time is something that we all think of as endless, but for each one of us it is the thing that confines us more than anything else.  Not enough time in the day, didn't sleep long enough, no time to do certain things; we measure our lives in time ... how old we are ... how long since ... I have to be at work by ...  Why?  Time is only limited if we allow it to be that way.  When did the future become more important than the present?

Carpe Diem - if not now, when?

Monday, 3 October 2011

Where does the money actually go?

I just read a thought provoking article about giving to charity, and considering that we are at the start of Pinktober and the mad rush to buy anything pink to raise money for breast cancer charities I wanted to put some thoughts down on 'paper'.  I am coming to the conclusion more and more that 'charity' it now just a marketing industry with the main aim of raising money to fund well paid jobs for a few. Doing charity work used to be a vocation, and still is for the millions who volunteer, but what about those with nice big pay cheques who are making such a nice living out of it all. Those who worked for charities used to be paid less than those in a for-profit organisation because they were trying to maximise the money they raised for the cause they were concerned with, but it almost seems to be the other way around now. Come and work for this charity and get paid lots of money to 'grow' our business ... NO you are a charity NOT a business. Do what you are supposed to do, what you claim to do ... you are not working in The City or on Wall Street to make money for yourself, you are working for a charity for the the benefit of others.

Why are there so many different charities all with the same aim? Think of the money being wasted on salaries for those doing the same job in each charity. I think it was a Canadian cancer charity which was criticised recently for spending more on fundraising than it did on research ... and you can be sure that this is not just a problem in this one charity. What about the millions they all spend on Branding, and re-Branding themselves every few years. WHY? Who gives a damn if they have a jazzy new logo? Why buy Christmas card where pennies from the £'s or $'s that they cost to buy actually goes to the charity funds? I'd rather buy cheap commercial cards (or make my own) and give £10 to a charity as in the end they will get much more. Think how much these cards actually cost to produce, then think who is getting the profit.

'Charity' sadly seems to be learning more from the Banking industry than any true and pure understanding that I have of what charity should be. Occasionally I get to help in the League of Friends shop in my local hospital and they do a 25% discount for helpers - why? I want to GIVE to the cause, not take advantage of it to save myself money. That said, the League have at least learned from past mistakes. Years ago they bought a scanner for the hospital and gave it to the NHS. The NHS then decided that it was too good for our little community hospital and moved it to Southampton General Hospital, the big acute hospital in this area. Now the League of Friends only loan equipment so it benefits those that the money raised is supposed to benefit. My little hospital now has an MRI scanner which is better than those in SGH and it will stay here.

Charities have to remember that they should be keeping their word, and as an advert says, making sure it "does what it says on the tin". If you are fund raising for cancer research, then fund the research, not marketing jobs and business consultants.

Sunday, 2 October 2011

Rambling thoughts...

Advice is so much easier to give than follow, that is why you give it away! We all deal with things in our own way, and we have to find that path for ourselves. We have all walked away from a situation thinking 'that's ridiculous', but it does strike a nerve and eventually makes us do something really dangerous like get our two atoms of brain cell to make a single spark of intelligent thought. Then the answer can seem so obvious you wonder why you hadn't thought of it before...

I always think that writing something down can really help you sort out your thoughts. It may never go anywhere but the bin, but having put them into some sort of order can give you time to think. Also with writing, especially on a computer where you can play around with it, you can leave it for a while and return to it when you are more settled. Often I will then re-read it and wonder what the heck I was talking if I can't understand it how can I expect others to!

We all think that our problems are the worst, precisely because they are OUR problem, and we are experiencing and feeling the effects of those problems. We live with those thoughts in the wee small hours and all day as they press down on us and we have to find ways of releasing that pressure without alienating everyone else. Depression, in my opinion, is a coping strategy but also a cry for help by hoping that others will notice the depression and reach out to you; but it is a coping strategy that cannot be successful in the long term because it is avoiding dealing with reality, and I have been doing that for over thirty years! Having cancer made me realise that I am the only one who can change my life for the better. There is no magic pill which will take it all away and make everything into a fairy tale, pills can help and support you, but only your actions can make things better. That takes work and I have had many failures along the way, and hit many brick walls at high speeds trying to do so. But depression is a natural thing which I have come to embrace as a way of letting out the negative and sad parts of my being but I finally feel as though I have some control over it and it no longer rules my life. As with my cancer I have it, it doesn't have me any longer.

It is difficult to look back and realise that you have wasted your life and know that you don't have time to be able to make a real difference.  But there again does it really matter.  I can't go back to being a teenager and tell myself how lonely my life would be because of choices I made when I was 14, because I am not sure they were really choices.  It was the only way I could survive at that time and in reality I have done the best I could do at that time.  You can't live with the airy fairy idea that if only I had done that everything would have been so much better...newsflash!  Life is not Hollywood, no one shouts 'cut' lets do that again, until you get it right.  My life is what it is and in all honesty it has not had much of an impact on the world.  I am a worker ant type, not a strutting peacock, brave lion, sleek cheetah; I will not be remembered my many people, but then maybe that in itself if a good thing as I hope I haven't had that negative an impact on anyone either that they would have cause to think of me.

A cancer diagnosis may be Stage 0 and never come back, but that diagnosis can still be the most devastating and profoundly life and soul altering experience that will ever happen to that individual. Who amongst us would ever want them to know what a Stage IV diagnosis is like. There is a difference between possibly and probably, and it is one which is what makes all the difference. Stage 1, they might possibly have a recurrence and die, Stage IV we will probably die.  We all still have to deal with our lot in life as best we can at the time, I just like to think I am making a pretty good job of life at the moment...