Ok...I have just started a group on facebook called Inspired Metastatic Breast Cancer Advocacy. I had to invite some people to be able to create the group, so I have invited the Inspirettes that I have contact with on facebook. Find the group at http://www.facebook.com/groups/345296408880546/
At present this is a secret group so only members can see what is going on. I am the only administrator at the moment, but if any of you want to join and volunteer to be an administrator then just let me know.
With all the talk about advocacy and facebook I thought that we could start with a group to do some 'blue sky thinking' about how we can get something done.
I will be going away for a few days tomorrow so don't worry if you application to join is not dealt with promptly as I won't have internet access. Though if any of you are quick off the mark and want to be administrators then that should solve that problem. I am not sure if you can create a facebook account using your screen name that you use on Inspire if you want to remain anonymous.
What does the team think? It is a baby step, but we need to start somewhere. Using social media might mean that we can spread the word quicker than by setting up a formal advocacy group, especially as we are from different countries. Vicki xxx
Thursday, 26 July 2012
Inspired Metastatic Breast Cancer Advocacy
This is mainly aimed at member fo the Inspire Advance Breast Cancer group, but some of you might also like to consider joining as well. There has been some discussion in Inspire about advocacy following the removal by The Gathering Place of the exhibit they commissioned from Angelo Merendino.
Wednesday, 25 July 2012
Sunshine = Vitamin D
The sun has been shining on this part of the south coast of England for the last few days. After weeks and weeks of rain which has given me cause to start planning to build an ark the sun has come. Of course this being England there is no real indication as to how long the sun will stay, but that doesn't really matter.
Having the sun shining down on me as I have been going for my daily walk to strengthen my bones and keep my self moving, also means that I have been able to well and truly top up on Vitamin D which is important to help the body synthesize calcium, but is also something that most women with breast cancer are deficient in.
I follow an integrated approach to dealing with my cancer and although I do have conventional treatment of Letrozole (Femara) and Zoledronic Acid (Zometa) to control the hormone production in my body (my cancer is oestrogen positive) and strengthen my bones. However I have never been convinced that conventional medicine has many answers to offer me that will not actually cause more side effects, one of which is possibly excellerating the cancer after holding it back for a while. I prefer to use more natural approaches that tackle the cancer while being kinder to my body than pharmaceutical medicines. After all a recent study has shown that conventional medicine is 62,000 times more likely to kill you than supplements and I know which I prefer to try http://articles.mercola.com/sites/articles/archive/2012/07/24/pharmaceutical-drugs-vs-nutritional-supplements.aspx?e_cid=20120724_DNL_artNew_1
As with any treatment we all have to go with what we feel is right for each of us and I know that many only want to consider the conventional western medical approach, and if that is right for you then that is what you should do. I know that there are those who say there is no evidence to support claims about Vitamin D etc, but I have just put in a search on PubMed for Vitamin D + breast cancer and there are 1133 entries. Just one of them is
Having the sun shining down on me as I have been going for my daily walk to strengthen my bones and keep my self moving, also means that I have been able to well and truly top up on Vitamin D which is important to help the body synthesize calcium, but is also something that most women with breast cancer are deficient in.
In a new study, women with vitamin D deficiency at the time of breast cancer diagnosis were 94% more likely to experience cancer spread and 73% more likely to die over the next 10 years, compared to women with adequate vitamin D levels http://www.webmd.com/breast-cancer/news/20080516/vitamin-d-deficiency-worsens-breast-cancerConventional medicine does not yet recommend taking Vitamin D supplements, but I am told that they give them to breast cancer patients at the Royal Marsden Hospital in London, which was the first dedicated cancer hospital in the world. This is despite the likelihood that those who are Vitamin D deficient are more like to have agressive cancers. http://www.canceractive.com/cancer-active-page-link.aspx?n=509
I follow an integrated approach to dealing with my cancer and although I do have conventional treatment of Letrozole (Femara) and Zoledronic Acid (Zometa) to control the hormone production in my body (my cancer is oestrogen positive) and strengthen my bones. However I have never been convinced that conventional medicine has many answers to offer me that will not actually cause more side effects, one of which is possibly excellerating the cancer after holding it back for a while. I prefer to use more natural approaches that tackle the cancer while being kinder to my body than pharmaceutical medicines. After all a recent study has shown that conventional medicine is 62,000 times more likely to kill you than supplements and I know which I prefer to try http://articles.mercola.com/sites/articles/archive/2012/07/24/pharmaceutical-drugs-vs-nutritional-supplements.aspx?e_cid=20120724_DNL_artNew_1
As with any treatment we all have to go with what we feel is right for each of us and I know that many only want to consider the conventional western medical approach, and if that is right for you then that is what you should do. I know that there are those who say there is no evidence to support claims about Vitamin D etc, but I have just put in a search on PubMed for Vitamin D + breast cancer and there are 1133 entries. Just one of them is
J Steroid Biochem Mol Biol. 2010 Jul;121(1-2):343-8. Epub 2010 Feb 13.
Vitamin D and breast cancer: inhibition of estrogen synthesis and signaling.
Source Division of Endocrinology, Department of Medicine, Stanford University School of Medicine, Stanford, CA 94305, United States.
Abstract
Calcitriol (1,25-dihydroxyvitamin D3), the hormonally active metabolite of vitamin D, inhibits the growth and induces the differentiation of many malignant cells including breast cancer (BCa) cells. Calcitriol exerts its anti-proliferative activity in BCa cells by inducing cell cycle arrest and stimulating apoptosis. Calcitriol also inhibits invasion, metastasis and tumor angiogenesis in experimental models of BCa. Our recent studies show additional newly discovered pathways of calcitriol action to inhibit the growth of BCa cells. Calcitriol suppresses COX-2 expression and increases that of 15-PGDH thereby reducing the levels and biological activity of prostaglandins (PGs). Calcitriol decreases the expression of aromatase, the enzyme that catalyzes estrogen synthesis selectively in BCa cells and the breast adipose tissue surrounding BCa, by a direct repression of aromatase transcription via promoter II as well as an indirect effect due to the reduction in the levels and biological activity of PGE2, which is a major stimulator of aromatase transcription through promoter II in BCa. Calcitriol down-regulates the expression of estrogen receptor alpha and thereby attenuates estrogen signaling in BCa cells including the proliferative stimulus provided by estrogens. We hypothesize that the inhibition of estrogen synthesis and signaling by calcitriol and its anti-inflammatory actions will play an important role in the use of calcitriol for the prevention and/or treatment of BCa.
Copyright (c) 2010 Elsevier Ltd. All rights reserved. http://www.ncbi.nlm.nih.gov/pubmed/20156557
For the role of Vitamin D with all diseases there are something like 55,000 entries. If you put in Vitamin C + cancer there are 9786 entries. How can they say there is no evidence? Because they can't be patented and therefore pharmaceutical companies can't make big profits from them. But I know which I prefer to try. Do the research yourself and make up your own mind.
Tuesday, 24 July 2012
The Gathering Storm
I copied my post about the Gathering Place taking down the photographic exhibit of a woman dying of metastatic breast cancer on to a forum for folks with advanced breast cancer and it has upset one reader who took exception to "The pink fluffy people are upset that Stage IV really does exists, and are scared that this may be their future - be afraid, be very afraid my little survivors as it could well be YOU."
I am not sure that she understood, or wanted to understand, what I was saying and maybe I didn't make myself clear enough in original blog entry. She is hurt by this because she doesn't have Stage IV breast cancer, but has been affected by cancer and has had a double mastectomy, and cancer took one of her kidneys last year and she almost died. She said that if she had died it would have been due to cancer although she is not Stage IV. I apologise that I obviously didn't explain clearly enough that I was talking about Stage IV metastatic breast cancer as I don't know enough about other cancers and their Staging to be able to comment. Maybe Stage I kidney cancer can kill you, but my understanding has always been that Stage I is a small, localised tumour that is considered curable. It is only when it progresses that it kills, but maybe I am wrong. However if the person in question did lost a kidney to metastatic breast cancer then, as far as I am aware, she is indeed Stage IV.
The 'fluffy pink people', as I rather dismissively refer to them, are the ones who want us to celebrate and support the concept that they are going to live, but who don't want to give support to those of us who are not expected to survive. God knows how much we all celebrate with them that they stand a good chance of surviving having early stage breast cancer. NO ONE would deny them the glory of being given an all-clear, and every one of us would pray that this will be the case. We actually don't want any more people joining the number of those of us who have been told by conventional medicine that they consider us to be incurable, and in my case that the only action they would take would be palliative. However I would have thought that the very fact that they will hopefully remain my 'fluffy pink people' would give them the empathy and understanding to want to celebrate those of us who will never be fluffy or pink. Instead they seem to want to ignore us and deny our existence rather than thinking 'there but by the grace of God go I' and supporting us to celebrate what life we have. The actions of The Gathering Place was another sign that this support is not mutual, that we are to be denied equality as being LIVING human beings in need of compassion, but an ugly reminder of what could be their fate. Hence the 'be afraid, be very afraid my little survivors as it could well be YOU'.
As I have stated before I grew up with a father who died less than three weeks after my 18th birthday. I have only the very vaguest memory of him being able to do things normally, but I do remember being carried in to say a last goodbye to him in the middle of the night, and on more than one occasion. Illness to me is something completely normal and an organic part of life. Life is, after all, the world's worst sexually transmitted disease. So far it is 100% fatal to mere mortals like me. Maybe that is why I don't understand why people are so scared of illness, and especially if it is life threatening, see it as being something that sets you apart from others.
I have probably mentioned my friend Hilary who died of stomach cancer 8 years ago (liver secondaries). I went to support her with her first dose of palliative chemo, and stayed with her to support her and was reading a Sherlock Holmes story to her when she died three months later. I couldn't comprehend how some friends could treat her as dead before she died. I made sure that in the hospice, even when she was in a coma, that she had her favourite music playing, I talked to her, and read to her. I told her, not long before she stopped breathing, and while she was in a coma that she had succeeded in everything that really mattered in life and that we loved her, but when she was ready she should slip away...I would be there. Yet she had a friend who phoned to ask after her and wondered what she could do for her. I said to send her a card or letter as she was off to London for the weekend, and that she tell her the latest, and about the trip. 'Oh I can't do that, I've already sent her a card' was the reply. One reason I stayed to support Hilary was because no one else seemed to want to do it, people who had known her longer ... even her family. They were happy to come to see her occasionally, but I knew that Hilly and I had many problems with depression, low self-esteem and self-confidence that we were trying to overcome by going to university to try and get the qualifications to pursue the career that we had always wanted. I just couldn't let her die alone, and in so short a time after her husband had walked out on her and they had divorced. Even when she was ill he liked to phone his 'friend' on occasion and whitter on about how happy her was with his new wife and life in Singapore, and even when he came back to the UK on business a month or so before she died and he had the opportunity, he didn't want to see her because it would upset HIM too much!!!!!
Stage IV is still about LIFE. That is what we struggle to get others to accept when all they want to do is put us on the other side of the line marked 'incurable = dead'. I will not be dead until I take my final breath and my heart and brain stop functioning. Even then it will only be the body that dies, the person remains. When we get the support with our stage of LIFE, the celebration of that life and the acceptence that is, to me, doled out in buckets to the fluffy pink people who are looking the other way, then I will cease to use the fluffy pink people analogy. Sadly through the actions of The Gathering Place and the general lack of acceptance of our illness, I don't see that happening in my life time ... but what the heck, the United States of America has a President whose father came from Africa! Who knows ... watch this space.
I am not sure that she understood, or wanted to understand, what I was saying and maybe I didn't make myself clear enough in original blog entry. She is hurt by this because she doesn't have Stage IV breast cancer, but has been affected by cancer and has had a double mastectomy, and cancer took one of her kidneys last year and she almost died. She said that if she had died it would have been due to cancer although she is not Stage IV. I apologise that I obviously didn't explain clearly enough that I was talking about Stage IV metastatic breast cancer as I don't know enough about other cancers and their Staging to be able to comment. Maybe Stage I kidney cancer can kill you, but my understanding has always been that Stage I is a small, localised tumour that is considered curable. It is only when it progresses that it kills, but maybe I am wrong. However if the person in question did lost a kidney to metastatic breast cancer then, as far as I am aware, she is indeed Stage IV.
The 'fluffy pink people', as I rather dismissively refer to them, are the ones who want us to celebrate and support the concept that they are going to live, but who don't want to give support to those of us who are not expected to survive. God knows how much we all celebrate with them that they stand a good chance of surviving having early stage breast cancer. NO ONE would deny them the glory of being given an all-clear, and every one of us would pray that this will be the case. We actually don't want any more people joining the number of those of us who have been told by conventional medicine that they consider us to be incurable, and in my case that the only action they would take would be palliative. However I would have thought that the very fact that they will hopefully remain my 'fluffy pink people' would give them the empathy and understanding to want to celebrate those of us who will never be fluffy or pink. Instead they seem to want to ignore us and deny our existence rather than thinking 'there but by the grace of God go I' and supporting us to celebrate what life we have. The actions of The Gathering Place was another sign that this support is not mutual, that we are to be denied equality as being LIVING human beings in need of compassion, but an ugly reminder of what could be their fate. Hence the 'be afraid, be very afraid my little survivors as it could well be YOU'.
As I have stated before I grew up with a father who died less than three weeks after my 18th birthday. I have only the very vaguest memory of him being able to do things normally, but I do remember being carried in to say a last goodbye to him in the middle of the night, and on more than one occasion. Illness to me is something completely normal and an organic part of life. Life is, after all, the world's worst sexually transmitted disease. So far it is 100% fatal to mere mortals like me. Maybe that is why I don't understand why people are so scared of illness, and especially if it is life threatening, see it as being something that sets you apart from others.
I have probably mentioned my friend Hilary who died of stomach cancer 8 years ago (liver secondaries). I went to support her with her first dose of palliative chemo, and stayed with her to support her and was reading a Sherlock Holmes story to her when she died three months later. I couldn't comprehend how some friends could treat her as dead before she died. I made sure that in the hospice, even when she was in a coma, that she had her favourite music playing, I talked to her, and read to her. I told her, not long before she stopped breathing, and while she was in a coma that she had succeeded in everything that really mattered in life and that we loved her, but when she was ready she should slip away...I would be there. Yet she had a friend who phoned to ask after her and wondered what she could do for her. I said to send her a card or letter as she was off to London for the weekend, and that she tell her the latest, and about the trip. 'Oh I can't do that, I've already sent her a card' was the reply. One reason I stayed to support Hilary was because no one else seemed to want to do it, people who had known her longer ... even her family. They were happy to come to see her occasionally, but I knew that Hilly and I had many problems with depression, low self-esteem and self-confidence that we were trying to overcome by going to university to try and get the qualifications to pursue the career that we had always wanted. I just couldn't let her die alone, and in so short a time after her husband had walked out on her and they had divorced. Even when she was ill he liked to phone his 'friend' on occasion and whitter on about how happy her was with his new wife and life in Singapore, and even when he came back to the UK on business a month or so before she died and he had the opportunity, he didn't want to see her because it would upset HIM too much!!!!!
Stage IV is still about LIFE. That is what we struggle to get others to accept when all they want to do is put us on the other side of the line marked 'incurable = dead'. I will not be dead until I take my final breath and my heart and brain stop functioning. Even then it will only be the body that dies, the person remains. When we get the support with our stage of LIFE, the celebration of that life and the acceptence that is, to me, doled out in buckets to the fluffy pink people who are looking the other way, then I will cease to use the fluffy pink people analogy. Sadly through the actions of The Gathering Place and the general lack of acceptance of our illness, I don't see that happening in my life time ... but what the heck, the United States of America has a President whose father came from Africa! Who knows ... watch this space.
Sunday, 22 July 2012
Music that INSPIRES
I belong to a forum called Inspire (Advanced Breast Cancer group) and a thread going on at the moment is 'Music to fight cancer by - a playlist for fun. However I just came across this and wow, it kinda sums up how I feel at the moment!
http://www.youtube.com/watch?v=GrPWFQdnYVc Mary J Blige 'The Living Proof'
I have already posted Helen Reddy 'I am Woman' http://www.youtube.com/watch?v=Zu4xpDuf84A&feature=related. As I am not at work for the summer, and I work in education the theme has to be http://www.youtube.com/watch?v=qga5eONXU_4
Music is something that can really take me places. I was given an MP3 player for my 50th birthday a couple of years ago and I keep it is my backpack so I can listen to something when I am out walking. Even more importantly I listen when I am having to wait around hospitals and during treatments. It really helps to have something to listen to that can remind me of somewhere wonderful, or a guided meditation that can take me to places where there is calm and brightness as the medication is pumped into my veins. Treatment is not something that any of us wants to have, but the more you resist it the less it will work for you. I 'see' the Zoledronic Acid going to the areas where it is really needed, and where it is a bit like Zorro weilding a sword made of killer T cells and popping cancer cell bubbles.
We all have music that we love, and music for different moods. I only like good music, but because I like it, it is good music. Vaughan-Williams 'The Lark Ascending', Rachmaninov piano concertos 2 and 3, and so many other things that he composed. On other occasions Jimi Hendrix's live version of Johnny B Goode can really hit the right note in tune with my mood. I just wish I had some musical talent to go with this love of music, I wish I could sing because that must be a marvelous thing; to say nothing of being very cathartic.
I went to the Three Choirs Festival a couple of years ago when it was held in Gloucester and hearing the music in the Cathedral was magical. At only one concert did I sit in the nave with a view of the stage, the rest of the time I sat in the Quire and admired the architecture while the music floated around me. The Three Choirs is on at the moment, and this year it is in Hereford, last year in Worcester, then back to Gloucester next year. Some of Elgar and Vaughan-Williams music was written for the Festival and my great-aunt sang in the Gloucester Cathedral choir for many years, but sadly the musical talent didn't reach me. I remember once, years ago, when I went to Gloucester to do some family history research I got there before the Archives opened so I went to the Cathedral for a while. It was a hot summer morning although it was only about 8am and when I walked into the cool of the cathedral the organist began to practice Bach's Toccatta. I am not usually a fan of organ music, but a great organ in a great church can be amazing as you can not only hear the music, but you can feel the music as the ground vibrates when it is at full throttle. How some of my ancestors must love being buried in the cloisters and being able to listen to that sound...
http://www.youtube.com/watch?v=GrPWFQdnYVc Mary J Blige 'The Living Proof'
I have already posted Helen Reddy 'I am Woman' http://www.youtube.com/watch?v=Zu4xpDuf84A&feature=related. As I am not at work for the summer, and I work in education the theme has to be http://www.youtube.com/watch?v=qga5eONXU_4
Music is something that can really take me places. I was given an MP3 player for my 50th birthday a couple of years ago and I keep it is my backpack so I can listen to something when I am out walking. Even more importantly I listen when I am having to wait around hospitals and during treatments. It really helps to have something to listen to that can remind me of somewhere wonderful, or a guided meditation that can take me to places where there is calm and brightness as the medication is pumped into my veins. Treatment is not something that any of us wants to have, but the more you resist it the less it will work for you. I 'see' the Zoledronic Acid going to the areas where it is really needed, and where it is a bit like Zorro weilding a sword made of killer T cells and popping cancer cell bubbles.
We all have music that we love, and music for different moods. I only like good music, but because I like it, it is good music. Vaughan-Williams 'The Lark Ascending', Rachmaninov piano concertos 2 and 3, and so many other things that he composed. On other occasions Jimi Hendrix's live version of Johnny B Goode can really hit the right note in tune with my mood. I just wish I had some musical talent to go with this love of music, I wish I could sing because that must be a marvelous thing; to say nothing of being very cathartic.
I went to the Three Choirs Festival a couple of years ago when it was held in Gloucester and hearing the music in the Cathedral was magical. At only one concert did I sit in the nave with a view of the stage, the rest of the time I sat in the Quire and admired the architecture while the music floated around me. The Three Choirs is on at the moment, and this year it is in Hereford, last year in Worcester, then back to Gloucester next year. Some of Elgar and Vaughan-Williams music was written for the Festival and my great-aunt sang in the Gloucester Cathedral choir for many years, but sadly the musical talent didn't reach me. I remember once, years ago, when I went to Gloucester to do some family history research I got there before the Archives opened so I went to the Cathedral for a while. It was a hot summer morning although it was only about 8am and when I walked into the cool of the cathedral the organist began to practice Bach's Toccatta. I am not usually a fan of organ music, but a great organ in a great church can be amazing as you can not only hear the music, but you can feel the music as the ground vibrates when it is at full throttle. How some of my ancestors must love being buried in the cloisters and being able to listen to that sound...
Mustn't tempt the weather gods!
The sun is shining today and the sky is a strange colour - blue! I can hear the hum of lawn mowers on a Sunday afternoon and all seems to be right with the world. I have booked a few days away because I think I should actually get on and do something this summer.
One priority is to find someone to give me a hand with taking some stuff to the municipal dump. The dump actually has a lovely view of the Isle of Wight on a good day so it isn't as awful as it sounds. I have a couple of TVs that need to go, amongst many things. In the UK we have gone over to digital TV so the old sets are of no use. One was a cast off from my brother, who had it cast on to him from his in-laws, so it has done the rounds. The little one that I had upstairs had an integral DVD player and I was hoping to be able to keep this for my Qi Gong DVDs but the player has packed up as well. So now I am using the portable DVD player that I got for my travels so I can watch some favourite films because there is usually only rubbish on the TV.
I actually watch very little TV these days, and I've even stopped buying a paper on a Saturday to get the TV Guide for the week. You know when you were a teenager and you thought you would never get out of touch with the latest trends and culture...well I don't have a clue! I wouldn't know what was Number 1 if I tripped over it, and I have no idea what is on TV. I guess it was partly a reaction to the domination of 'reality' TV (which is so unreal it is unbelieveable) and programmes like the X Factor and Britain's Got Talent...ooooh and worse still those programmes with 'celebrities' that no one has heard off, except that they are 'celebrities' for doing nothing and having little or no talent. Besides which they are 'celebrities' for such a short time that no one is going to remember them in 5 years time anyway.
I have become very selective about what I watch on the Box and my main way of finding out what is worth watching is to use the BBC iPlayer facility. This means that I don't miss part of the programme, and if I really like a series I can put it on series record. I only really do that with University Challenge because A. I can never remember what time it starts when the time is approaching (8 or 8.30) and I tend to get it wrong; and B. because I can answer some of the questions, in the early rounds at least which is pleasing to my ego (especially when the contestants get it wrong).
The main thing is that I just don't feel the need to use TV to fill my time, or my imagination. I would much rather read a book, or meditate, or blog for that matter. After all you are entitled to my opinion, as this blog sub-title suggests.
Crickey that sky is a beautiful colour...
One priority is to find someone to give me a hand with taking some stuff to the municipal dump. The dump actually has a lovely view of the Isle of Wight on a good day so it isn't as awful as it sounds. I have a couple of TVs that need to go, amongst many things. In the UK we have gone over to digital TV so the old sets are of no use. One was a cast off from my brother, who had it cast on to him from his in-laws, so it has done the rounds. The little one that I had upstairs had an integral DVD player and I was hoping to be able to keep this for my Qi Gong DVDs but the player has packed up as well. So now I am using the portable DVD player that I got for my travels so I can watch some favourite films because there is usually only rubbish on the TV.
I actually watch very little TV these days, and I've even stopped buying a paper on a Saturday to get the TV Guide for the week. You know when you were a teenager and you thought you would never get out of touch with the latest trends and culture...well I don't have a clue! I wouldn't know what was Number 1 if I tripped over it, and I have no idea what is on TV. I guess it was partly a reaction to the domination of 'reality' TV (which is so unreal it is unbelieveable) and programmes like the X Factor and Britain's Got Talent...ooooh and worse still those programmes with 'celebrities' that no one has heard off, except that they are 'celebrities' for doing nothing and having little or no talent. Besides which they are 'celebrities' for such a short time that no one is going to remember them in 5 years time anyway.
I have become very selective about what I watch on the Box and my main way of finding out what is worth watching is to use the BBC iPlayer facility. This means that I don't miss part of the programme, and if I really like a series I can put it on series record. I only really do that with University Challenge because A. I can never remember what time it starts when the time is approaching (8 or 8.30) and I tend to get it wrong; and B. because I can answer some of the questions, in the early rounds at least which is pleasing to my ego (especially when the contestants get it wrong).
The main thing is that I just don't feel the need to use TV to fill my time, or my imagination. I would much rather read a book, or meditate, or blog for that matter. After all you are entitled to my opinion, as this blog sub-title suggests.
Crickey that sky is a beautiful colour...
Friday, 20 July 2012
The Gathering Place - but only for cancer survivors
The Gathering Place - A caring community for those touched by cancer, unless it kills you that is!
http://www.touchedbycancer.org/2012/07/art-imitating-life/
The link actually says more that they probably meant to say about the attitude of the cancer community to metastatic cancer - aka the cancer that kills. "Art imitating life". Hmmm.
Cancer, and breast cancer in particular, is dominated by "survivors" and while many cancers can be 'cured' this is not the case for all cancers and I am fed up with the pink fluffy people who simultaneously want to shout about how they are cured and then expect others to listen to them whinge about the stress of having 'cancer that nearly killed me'. Stage I or Stage II cancer does NOT kill. It only kills when it progresses to Stage IV when it is considered incurable. It almost makes me want to wish Stage IV on them, but I wouldn't actually do that to anyone.
This art exhibition has imitated life in that it has been banned and censored by a charity because it has upset some of their volunteers and other visitors. The pink fluffy people are upset that Stage IV really does exists, and are scared that this may be their future - be afraid, be very afraid my little survivors as it could well be YOU.
Such charities are happy to raise money from the FACT that thousands of people die of cancer each year; actually world wide I think it is over 7 million. But what happens to this money? Does it go towards research for a cure? No most of it goes to 'prevention' or stopping cancer becoming incurable. It goes to the fluffy pink people. I once asked Cancer Research UK who much of their annual research budget of about £400million they spent on any type of secondary cancer, the answer was 1%. Yep, you read that correctly, one per cent goes to research into the cancer that kills - of any sort, not just breast cancer.
Someone I know once went to a Breast Cancer 'support' group and after she mentioned that she was Stage IV no one would speak to her; she never went back. Another friend was told up front by the 'support' group that she went to that she was not to say she was Stage IV. She ended up giving support to the pink fluffy people, who should actually have been giving her support except that they don't want to recognise that we actually exist. We are their nightmare, but no one wants to tell them that there is something like a 30% chance that they will join us. The survivors are upset about seeing photos of us; but how upsetting is their prejudice and reaction to the truth of our situation to those of use who are living with this?
http://www.touchedbycancer.org/2012/07/art-imitating-life/
The link actually says more that they probably meant to say about the attitude of the cancer community to metastatic cancer - aka the cancer that kills. "Art imitating life". Hmmm.
Cancer, and breast cancer in particular, is dominated by "survivors" and while many cancers can be 'cured' this is not the case for all cancers and I am fed up with the pink fluffy people who simultaneously want to shout about how they are cured and then expect others to listen to them whinge about the stress of having 'cancer that nearly killed me'. Stage I or Stage II cancer does NOT kill. It only kills when it progresses to Stage IV when it is considered incurable. It almost makes me want to wish Stage IV on them, but I wouldn't actually do that to anyone.
This art exhibition has imitated life in that it has been banned and censored by a charity because it has upset some of their volunteers and other visitors. The pink fluffy people are upset that Stage IV really does exists, and are scared that this may be their future - be afraid, be very afraid my little survivors as it could well be YOU.
Such charities are happy to raise money from the FACT that thousands of people die of cancer each year; actually world wide I think it is over 7 million. But what happens to this money? Does it go towards research for a cure? No most of it goes to 'prevention' or stopping cancer becoming incurable. It goes to the fluffy pink people. I once asked Cancer Research UK who much of their annual research budget of about £400million they spent on any type of secondary cancer, the answer was 1%. Yep, you read that correctly, one per cent goes to research into the cancer that kills - of any sort, not just breast cancer.
Someone I know once went to a Breast Cancer 'support' group and after she mentioned that she was Stage IV no one would speak to her; she never went back. Another friend was told up front by the 'support' group that she went to that she was not to say she was Stage IV. She ended up giving support to the pink fluffy people, who should actually have been giving her support except that they don't want to recognise that we actually exist. We are their nightmare, but no one wants to tell them that there is something like a 30% chance that they will join us. The survivors are upset about seeing photos of us; but how upsetting is their prejudice and reaction to the truth of our situation to those of use who are living with this?
Thursday, 19 July 2012
Tonight is a full moon
Which may explain why I have had a rather hyper day, or maybe it is the meditation that has been making me feel so good today. I have even figured out how to add extra pages to my blog so I can post some more things about me and hopefully include some information that I think is important. I had noticed these extra pages on other blogs and was wondering how I could do that as well, and preferably without losing the entire thing.
This morning I had a call from Macmillan Cancer Support in reply to my interest in a survey they are doing about being on your own and having cancer. For those of you who don't know it Macmillan is the biggest cancer support charities in the UK. I have been one of their Cancer Voices for a while, but so far I have only reviewed books and other literature that they provide to cancer patients, carers and health care professionals. We had a very interesting conversation, which had the added advantage of stopping me doing the washing up :O) though of course I had to go back to that afterwards. [Why is it that when ever you empty the washing up bowl you find something else that needs washing up?] One thing that I said is the I feel we need to come out of the closet a bit more about cancer. Why can't we talk about it like it is a normal thing when it affects so many? Other people can bore you to tears about their pregnancy, or are treated normally if they break a leg ... but have cancer and you become an out cast. A sort of 'Don't Ask, Don't Tell' of illnesses.
Because I grew up with a father who was so ill I have always considered illness to be a perfectly normal part of everyday life. Others have had little or no experience of illness and seem to be completely thrown when you say you have cancer. After all it is only cancer. I haven't grown another head or turned into an alien; my eyes are still in the normal place and not on antenna that have sprouted out of the top of my head. They predict that one in three people will have a personal experience of cancer, and one in nine women will develop breast cancer during their lives. This is main-stream people, not some weird cult. It is even said that everyone has cancer cells in their body, it's just that some people don't develop a tumour, or the disease. So why is it such a DADT subject?
It was also good to know that one of the biggest cancer charities is actually taking an interest in those of us who have cancer and are on our own. It is never an easy thing to have, but sometimes I envy those who have someone to go home to each day, and to remind them that there is a normal life out there. At times I get very depressed and this is made worse by being on my own, not having someone to shout at, or ask when supper is going to be ready? Did you iron my shirt? To do things with, to distract you from the fact of having cancer. On your own you can dwell on this too much and not have someone to snap you out of it and into a different headspace. On the other hand I know how hard it is to deal with someone else's illness and the potential loss, but I do dwell on the idea that no one will miss me, or even notice that I am not there any more.
Wasn't I just typing about how good I felt today? And I do. Now I must get ready to go and howl at the moon ... howwwwwuulllllllllll.
This morning I had a call from Macmillan Cancer Support in reply to my interest in a survey they are doing about being on your own and having cancer. For those of you who don't know it Macmillan is the biggest cancer support charities in the UK. I have been one of their Cancer Voices for a while, but so far I have only reviewed books and other literature that they provide to cancer patients, carers and health care professionals. We had a very interesting conversation, which had the added advantage of stopping me doing the washing up :O) though of course I had to go back to that afterwards. [Why is it that when ever you empty the washing up bowl you find something else that needs washing up?] One thing that I said is the I feel we need to come out of the closet a bit more about cancer. Why can't we talk about it like it is a normal thing when it affects so many? Other people can bore you to tears about their pregnancy, or are treated normally if they break a leg ... but have cancer and you become an out cast. A sort of 'Don't Ask, Don't Tell' of illnesses.
Because I grew up with a father who was so ill I have always considered illness to be a perfectly normal part of everyday life. Others have had little or no experience of illness and seem to be completely thrown when you say you have cancer. After all it is only cancer. I haven't grown another head or turned into an alien; my eyes are still in the normal place and not on antenna that have sprouted out of the top of my head. They predict that one in three people will have a personal experience of cancer, and one in nine women will develop breast cancer during their lives. This is main-stream people, not some weird cult. It is even said that everyone has cancer cells in their body, it's just that some people don't develop a tumour, or the disease. So why is it such a DADT subject?
It was also good to know that one of the biggest cancer charities is actually taking an interest in those of us who have cancer and are on our own. It is never an easy thing to have, but sometimes I envy those who have someone to go home to each day, and to remind them that there is a normal life out there. At times I get very depressed and this is made worse by being on my own, not having someone to shout at, or ask when supper is going to be ready? Did you iron my shirt? To do things with, to distract you from the fact of having cancer. On your own you can dwell on this too much and not have someone to snap you out of it and into a different headspace. On the other hand I know how hard it is to deal with someone else's illness and the potential loss, but I do dwell on the idea that no one will miss me, or even notice that I am not there any more.
Wasn't I just typing about how good I felt today? And I do. Now I must get ready to go and howl at the moon ... howwwwwuulllllllllll.
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