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.
When will 'they' start to listen?
How many of you have heard of David Servan-Schreiber? First watch this trailer http://vimeo.com/44908579 for a film about him and the come back here.
Questions:
It is all a bit like the cigarette manufacturers who spent years denying that smoking had a strong link to cancer, and lung cancer in particular. Today there is plenty of evidence that various chemicals, plastics, additives etc are carginogenic but still they all deny any link. They even use 'consumer demand' for foods loaded with fats and additives as being a reason why they should still be allowed to make, market and sell these products. Now I am not saying that the public has no responsibility in all of this but how many people really think 'it' will happen to them? What happens when there is no real alternative but to buy some of these products because they are not available without the plastic bottle, or the plastic lining in the can? Some of us are prepared to change the way, and what, we buy, but others can't or won't - because it won't happen to them.
Even some supposedly health foods are nothing of the kind, but are advertised as such. One blueberry does not a healthy snack make; so why promote it as a healthy alternative when only one really small part of it is infact healthy and the rest is not. 'Low Fat' often means full of sugar, and 'Low Sugar' often means full of fat or carcinogenic chemicals.
It is not only the hype and marketing which is so worrying because even more disturbing is the kind of influence that these manufacturers have over the politicians and Regulators who are empowered to look after the interests of the consumer. Those same consumers who politicians should remember are also their constituents who voted them into power, and the people who should be able to trust them to do the best for the interests of society, and the planet, as a whole. I now feel that politics is more about ego, power and future employment prospects (and a damned good pension for representing people for possibly only a since term) than it is about DEMOCRACY. Through the influence of these big companies they will put restrictions of natural medicines which have been used for hundreds or thousands of years while allowing the manufacture and distribution of pharmaceutical medicines which according so some sources are 62,000 times more likely to kill you than supplements. Yes you did read that statistic correctly. http://anh-europe.org/news/anh-exclusive-natural-health-products-ultra-safe-and-drugs-as-dangerous-as-war
The bottom line now seems to be that there isn't enough profit in natural medicines because their availability cannot be restriced through patents. What price a human life?
Questions:
- How many times do doctors of conventional medicine say that there is nothing that a patient can do but have conventional treatment - surgery, chemo, radiotherapy?
- How many are told to eat what they like as it won't make any difference?
- Do they know exactly what causes cancer?
- Who makes the biggest profit out of the cancer industry?
- Which organisation thinks that 30% of cancer is preventable?
- Too many.
- Too many.
- No.
- Pharmaceutical companies, makers of the technology to treat cancer and in some health care systems - doctors. http://www.thisismoney.co.uk/money/markets/article-2174537/CITY-FOCUS-The-deadly-sins-greedy-pharmaceutical-companies.html
- WHO - the World Health Organisation. http://www.who.int/cancer/en/
It is all a bit like the cigarette manufacturers who spent years denying that smoking had a strong link to cancer, and lung cancer in particular. Today there is plenty of evidence that various chemicals, plastics, additives etc are carginogenic but still they all deny any link. They even use 'consumer demand' for foods loaded with fats and additives as being a reason why they should still be allowed to make, market and sell these products. Now I am not saying that the public has no responsibility in all of this but how many people really think 'it' will happen to them? What happens when there is no real alternative but to buy some of these products because they are not available without the plastic bottle, or the plastic lining in the can? Some of us are prepared to change the way, and what, we buy, but others can't or won't - because it won't happen to them.
Even some supposedly health foods are nothing of the kind, but are advertised as such. One blueberry does not a healthy snack make; so why promote it as a healthy alternative when only one really small part of it is infact healthy and the rest is not. 'Low Fat' often means full of sugar, and 'Low Sugar' often means full of fat or carcinogenic chemicals.
It is not only the hype and marketing which is so worrying because even more disturbing is the kind of influence that these manufacturers have over the politicians and Regulators who are empowered to look after the interests of the consumer. Those same consumers who politicians should remember are also their constituents who voted them into power, and the people who should be able to trust them to do the best for the interests of society, and the planet, as a whole. I now feel that politics is more about ego, power and future employment prospects (and a damned good pension for representing people for possibly only a since term) than it is about DEMOCRACY. Through the influence of these big companies they will put restrictions of natural medicines which have been used for hundreds or thousands of years while allowing the manufacture and distribution of pharmaceutical medicines which according so some sources are 62,000 times more likely to kill you than supplements. Yes you did read that statistic correctly. http://anh-europe.org/news/anh-exclusive-natural-health-products-ultra-safe-and-drugs-as-dangerous-as-war
The bottom line now seems to be that there isn't enough profit in natural medicines because their availability cannot be restriced through patents. What price a human life?
Tuesday, 17 July 2012
Healing with my father
One level of healing which started ten years ago is my relationship with my father. This has actually been really cathartic for me and began before my diagnosis.
My father was born in 1899 and I was born in 1960, and I had a half-brother who was older than my mother. My father had lived a full life before marrying for a third time in 1953 and becoming a father again with the birth of my brother in 1958. However to a great extent my father was a figure of terror who remained a mystery to me for most of my life. I don't remember a father who was fun, but one who was ill and who sat in the Sitting Room and whose temper was extremely volitile. He would rant for days on end, over and over about the same things. I just didn't understand because his illness was never really explained to me, though I knew that it was life threatening because I would be taken out of bed in the middle of the night on occassion to say goodbye to him. He died less than three weeks after my 18th Birthday. When my father died I stopped sucking my thumb; just stopped with no effort and it took a while for me to realise this. I no longer needed the comfort, my father was dead.
Let's skip on about 22 years ... my 40th birthday came and went and I began to wonder if I really could do something with my life. So I started to return to education and the study of archaeology in particular. To be able to get to university I needed some qualifications so I did and Access To Higher Education course at the college where I worked as a cleaner. I did a module in Biology and for that I had to do an essay about gas exchange in the lungs and so I decided to study emphysema, the disease which had killed my father. The first thing I realised was that I wasn't even pronouncing the name of the disease correctly, and secondly I realised how little I knew about this illness. The research was a revelation, and for the first time I began to understand how the illness effected my father.
Until then I had thought my father acted the way he did because of the power that he had. The research showed me that he was like that because of the lack of power that he had over his health and maybe out of the guilt he felt at having started another family that he may well not have seen grow up. As it was I was just a legal adult when he felt he was finally able to slip away. I understood, at last, how how the disease would have effected him physically, the lack of oxygen, the medications that he was on, the pain, the panic. Suddenly he was no longer the father who had dominated my childhood, but he was an old man who was very ill and trying to protect us by being overly controlling in what I did, where I went etc.
My father experienced many things in life that I have not. He was in the Royal Flying Corps in World War I, lived through the Great Depression, returned to what was by then the Royal Air Force in World War II. He had been married three times and I believe he came to regret not taking much part in the life of his eldest child who I did not meet until just before Father died. Eric actually knew nothing about me as they had severed contact after the death of our grandmother shortly after my brother was born. My Father wanted to protect me, but he ended up squashing me, taking away any self-esteem I may have had and left me feeling ... as though I didn't really exist. He did what he did for all the right reasons, and in all the wrong ways.
I have struggled with self-expression because I hardly dared to do or say anything that would upset him and potentially give him an angina attack that might possibly kill him. I learned to express myself through silence and anger, and a grim determination to just keep going in the hope that I would find something to make being alive worth while. Strangely enough I found that in education and through a diagnosis of incurable cancer. Even more than I did ten years ago, I understand my father and I feel a connection with him, and a peace with him, that I didn't have before. I accept and appreciate him for who he was, and I think he would do the same with the person I am now.
My father was born in 1899 and I was born in 1960, and I had a half-brother who was older than my mother. My father had lived a full life before marrying for a third time in 1953 and becoming a father again with the birth of my brother in 1958. However to a great extent my father was a figure of terror who remained a mystery to me for most of my life. I don't remember a father who was fun, but one who was ill and who sat in the Sitting Room and whose temper was extremely volitile. He would rant for days on end, over and over about the same things. I just didn't understand because his illness was never really explained to me, though I knew that it was life threatening because I would be taken out of bed in the middle of the night on occassion to say goodbye to him. He died less than three weeks after my 18th Birthday. When my father died I stopped sucking my thumb; just stopped with no effort and it took a while for me to realise this. I no longer needed the comfort, my father was dead.
Let's skip on about 22 years ... my 40th birthday came and went and I began to wonder if I really could do something with my life. So I started to return to education and the study of archaeology in particular. To be able to get to university I needed some qualifications so I did and Access To Higher Education course at the college where I worked as a cleaner. I did a module in Biology and for that I had to do an essay about gas exchange in the lungs and so I decided to study emphysema, the disease which had killed my father. The first thing I realised was that I wasn't even pronouncing the name of the disease correctly, and secondly I realised how little I knew about this illness. The research was a revelation, and for the first time I began to understand how the illness effected my father.
Until then I had thought my father acted the way he did because of the power that he had. The research showed me that he was like that because of the lack of power that he had over his health and maybe out of the guilt he felt at having started another family that he may well not have seen grow up. As it was I was just a legal adult when he felt he was finally able to slip away. I understood, at last, how how the disease would have effected him physically, the lack of oxygen, the medications that he was on, the pain, the panic. Suddenly he was no longer the father who had dominated my childhood, but he was an old man who was very ill and trying to protect us by being overly controlling in what I did, where I went etc.
My father experienced many things in life that I have not. He was in the Royal Flying Corps in World War I, lived through the Great Depression, returned to what was by then the Royal Air Force in World War II. He had been married three times and I believe he came to regret not taking much part in the life of his eldest child who I did not meet until just before Father died. Eric actually knew nothing about me as they had severed contact after the death of our grandmother shortly after my brother was born. My Father wanted to protect me, but he ended up squashing me, taking away any self-esteem I may have had and left me feeling ... as though I didn't really exist. He did what he did for all the right reasons, and in all the wrong ways.
I have struggled with self-expression because I hardly dared to do or say anything that would upset him and potentially give him an angina attack that might possibly kill him. I learned to express myself through silence and anger, and a grim determination to just keep going in the hope that I would find something to make being alive worth while. Strangely enough I found that in education and through a diagnosis of incurable cancer. Even more than I did ten years ago, I understand my father and I feel a connection with him, and a peace with him, that I didn't have before. I accept and appreciate him for who he was, and I think he would do the same with the person I am now.
Monday, 16 July 2012
How can I heal me, let me count the ways...
I have spent the day trying to connect with the things I want to do during the summer holidays. I was having a browse through some of the things that I have downloaded over a period of time and decided to start one particular course of study that will really help me.
One of the thoughts that came to mind during the day was 'how can you actually be healed when you have cancer'? I have to say that in many ways having incurable cancer has healed my life in many ways though I appreciate that this may sound like a contradiction in terms. How can something that is potentially killing you also be healing you?
I guess this comes down to what exactly I mean by 'healing'. Healing has become something that has so many levels, and so many ways of working in my favour and I can't honestly claim to have succeeded on every level, but the journey has been fascinating. Odd as it may sound, cancer has been something that has really given me hope for the present and the rather undefinable thing that is my future. I haven't really put that very well, but I don't think that the future as something that has clear boundaries or a time scale; it's just there. Cancer has made me own the present moment in a way that I didn't BC (Before Cancer) because it changed everything almost beyond recognition. This change was not a blinding flash of inspiration, nor a conversion on the road to Damascus, but something that has come about after peeling off several layers of the emotions that such a diagnosis brings to the surface of your being.
I honestly don't see how anyone can go through the diagnosis of cancer and emerge as the same person; certainly not metastatic cancer. When I was first, and wrongly as it turned out, diagnosed with primary cancer I was quite calm about the whole thing. At the pre-op assessment a nurse actually mentioned how calm I was about the planned mastectomy, and I answered that this was because my mother had breast cancer and died 15 years later of something completely unconnected; and that when there was something to really worry about I would. I knew what I would look like physically post-op so that was also not a concern for me. My diagnosis with secondary cancer was not as easy as the primary diagnosis, mainly because I wasn't told directly that the cancer had spread until after the reality had dawned on me.
Sitting in the oncologist's consulting room looking at the x-ray of my right hip as she made an excuse to leave the room, as it turned out to arrange for more x-rays and to admit me straight to orthopaedics, I knew something was very wrong. I could see that the femur was marbled and the thought that the cancer had spread kept popping into my mind. I was told that there was a problem with my hip, hence my admission to the hospital, but no one actually said it was cancer. The used terms like lession, and as I didn't have a medical background I was wondering if this meant something bad, or something really bad. Over the next couple of days before having a total hip replacement I came to realise that it was 'something really bad'.
Somehow when you are faced with something like that and you are on a public ward in a General Hospital where there are things going on all the time it doesn't really sink in as it does in the wee small hours of the morning when you are home alone and unable to sleep. I felt so isolated, and unable to express how I felt, partly because of the good old British Stiff Upper Lip, but also because I didn't want to worry others, nor publicly admit that this was something that I couldn't take on the chin and smile reassuringly about. After all no one likes people who whinge all the time. For a few months I raged against this when I was alone, until I realised that I was wasting my time and energy; and if anything I was giving the cancer more energy to tap into. Also how exactly do you explain this to someone who isn't Stage IV?
Eventually I had to find a way of coming to terms with this, and with finding a way to challenge the cancer because I wasn't going to just sit in a corner, curl up, and die. That I was not offered chemo made me feel as though they didn't think I was worth the expense of the drugs, and that it wouldn't work anyway. Now I am glad that they didn't because it made me go out and find some way of helping myself, and relying on myself rather than just conventional Western Medicine. It made me start to work on the healing of my whole being while coming to recognising that there were many levels on which I needed to heal myself.
I do feel as though I have healed myself on many levels which are far more important that just the tumour level. In many ways the cancer has become irrelevant to this healing process because that isn't what I ultimately need to be healed. The healing that I needed was to accept what was happening, to come to realise that it is this very moment that I need to be present in, and that I could no longer hold on to the pain of the past because it wasn't allowing me to experience the present, let alone any future that I may have. I had to let go of the anger, resentment and sorrow at the loss of my life, but that loss was not due to cancer, but to the fact that I had been unable to enjoy life. It had been something to be endured rather than enjoyed. The cancer may get me in the end, but many other parts of my life have, and are in the process of being, healed. This is why cancer has given more to my life than it is ever going to take.
One of the thoughts that came to mind during the day was 'how can you actually be healed when you have cancer'? I have to say that in many ways having incurable cancer has healed my life in many ways though I appreciate that this may sound like a contradiction in terms. How can something that is potentially killing you also be healing you?
I guess this comes down to what exactly I mean by 'healing'. Healing has become something that has so many levels, and so many ways of working in my favour and I can't honestly claim to have succeeded on every level, but the journey has been fascinating. Odd as it may sound, cancer has been something that has really given me hope for the present and the rather undefinable thing that is my future. I haven't really put that very well, but I don't think that the future as something that has clear boundaries or a time scale; it's just there. Cancer has made me own the present moment in a way that I didn't BC (Before Cancer) because it changed everything almost beyond recognition. This change was not a blinding flash of inspiration, nor a conversion on the road to Damascus, but something that has come about after peeling off several layers of the emotions that such a diagnosis brings to the surface of your being.
I honestly don't see how anyone can go through the diagnosis of cancer and emerge as the same person; certainly not metastatic cancer. When I was first, and wrongly as it turned out, diagnosed with primary cancer I was quite calm about the whole thing. At the pre-op assessment a nurse actually mentioned how calm I was about the planned mastectomy, and I answered that this was because my mother had breast cancer and died 15 years later of something completely unconnected; and that when there was something to really worry about I would. I knew what I would look like physically post-op so that was also not a concern for me. My diagnosis with secondary cancer was not as easy as the primary diagnosis, mainly because I wasn't told directly that the cancer had spread until after the reality had dawned on me.
Sitting in the oncologist's consulting room looking at the x-ray of my right hip as she made an excuse to leave the room, as it turned out to arrange for more x-rays and to admit me straight to orthopaedics, I knew something was very wrong. I could see that the femur was marbled and the thought that the cancer had spread kept popping into my mind. I was told that there was a problem with my hip, hence my admission to the hospital, but no one actually said it was cancer. The used terms like lession, and as I didn't have a medical background I was wondering if this meant something bad, or something really bad. Over the next couple of days before having a total hip replacement I came to realise that it was 'something really bad'.
Somehow when you are faced with something like that and you are on a public ward in a General Hospital where there are things going on all the time it doesn't really sink in as it does in the wee small hours of the morning when you are home alone and unable to sleep. I felt so isolated, and unable to express how I felt, partly because of the good old British Stiff Upper Lip, but also because I didn't want to worry others, nor publicly admit that this was something that I couldn't take on the chin and smile reassuringly about. After all no one likes people who whinge all the time. For a few months I raged against this when I was alone, until I realised that I was wasting my time and energy; and if anything I was giving the cancer more energy to tap into. Also how exactly do you explain this to someone who isn't Stage IV?
Eventually I had to find a way of coming to terms with this, and with finding a way to challenge the cancer because I wasn't going to just sit in a corner, curl up, and die. That I was not offered chemo made me feel as though they didn't think I was worth the expense of the drugs, and that it wouldn't work anyway. Now I am glad that they didn't because it made me go out and find some way of helping myself, and relying on myself rather than just conventional Western Medicine. It made me start to work on the healing of my whole being while coming to recognising that there were many levels on which I needed to heal myself.
I do feel as though I have healed myself on many levels which are far more important that just the tumour level. In many ways the cancer has become irrelevant to this healing process because that isn't what I ultimately need to be healed. The healing that I needed was to accept what was happening, to come to realise that it is this very moment that I need to be present in, and that I could no longer hold on to the pain of the past because it wasn't allowing me to experience the present, let alone any future that I may have. I had to let go of the anger, resentment and sorrow at the loss of my life, but that loss was not due to cancer, but to the fact that I had been unable to enjoy life. It had been something to be endured rather than enjoyed. The cancer may get me in the end, but many other parts of my life have, and are in the process of being, healed. This is why cancer has given more to my life than it is ever going to take.
Starting the 21-Day Meditation Challenge
Today is the first day of the Chopra Centre 21-Day Meditation Challenge and the theme for this summer challenge is love. Hmmm, thought I when I first heard about it but from the intro by Deepak Chopra it sounds very interesting.
Meditation is something that I love to do, but I don't really do it for very long or at a set time. Today is the first day I don't have to be at work until early September - one of the good things about working term-time only in an educational establishment - so I am challenging myself to do the meditation in the morning. This might actually be a really good time to meditate for me as when the new academic year starts in September I will not be starting work until 2pm. As I usually wake up early and find it hard to laze in bed these days (unless I have zonked out the night before and can't wake up early) it will be good to meditate, have breakfast and get on with the day. I wasn't too sure what time the meditation would be arriving in my Email account, but it would appear to be about 7am here in the UK.
I was actually up about 5am this morning because I went to bed so early last night. I am trying to break the habit of waking up about 3am which has partly become a habit from having a snooze in the late afternoon, or early evening. Last night I managed to hold out until I was falling asleep at the mouse, so to speak. Maybe I also slept better because I did a half hour meditation last night; spurred on my the thought of the start of the 21-Day Challenge.
Sometime I think that one of the reasons I find it difficult to get into a routine of doing longer meditations is because I feel as though I get 'lost' in them and then don't want to get on with anything else. The micro-meditations that I do a lot are about concentrating on my breathing to centre myself again, but with a longer meditation I feel as though I can disappear into a white bubble where I can release the physical pain that I may be feeling, but also have the ability to experience just this very moment. So why am I so reluctant to commit to this?
One reason could be that I don't truly believe that I am worth spending the time on. I don't think of myself as being important and I suppose I really did believe it when my father told me I would never be anything or succeed at anything. How powerful these memories can be to be able to pull you back to a moment in your childhood when a parent who has been dead for 34 years confimed your impression that you were noone. I still have to remind myself that I am worth the time to do things that make me feel complete and worthy. As the advert says 'because I'm worth it'.
Meditation is something that I love to do, but I don't really do it for very long or at a set time. Today is the first day I don't have to be at work until early September - one of the good things about working term-time only in an educational establishment - so I am challenging myself to do the meditation in the morning. This might actually be a really good time to meditate for me as when the new academic year starts in September I will not be starting work until 2pm. As I usually wake up early and find it hard to laze in bed these days (unless I have zonked out the night before and can't wake up early) it will be good to meditate, have breakfast and get on with the day. I wasn't too sure what time the meditation would be arriving in my Email account, but it would appear to be about 7am here in the UK.
I was actually up about 5am this morning because I went to bed so early last night. I am trying to break the habit of waking up about 3am which has partly become a habit from having a snooze in the late afternoon, or early evening. Last night I managed to hold out until I was falling asleep at the mouse, so to speak. Maybe I also slept better because I did a half hour meditation last night; spurred on my the thought of the start of the 21-Day Challenge.
Sometime I think that one of the reasons I find it difficult to get into a routine of doing longer meditations is because I feel as though I get 'lost' in them and then don't want to get on with anything else. The micro-meditations that I do a lot are about concentrating on my breathing to centre myself again, but with a longer meditation I feel as though I can disappear into a white bubble where I can release the physical pain that I may be feeling, but also have the ability to experience just this very moment. So why am I so reluctant to commit to this?
One reason could be that I don't truly believe that I am worth spending the time on. I don't think of myself as being important and I suppose I really did believe it when my father told me I would never be anything or succeed at anything. How powerful these memories can be to be able to pull you back to a moment in your childhood when a parent who has been dead for 34 years confimed your impression that you were noone. I still have to remind myself that I am worth the time to do things that make me feel complete and worthy. As the advert says 'because I'm worth it'.
Sunday, 15 July 2012
Sometimes I forget to be grateful for gratitude
There are way too many things that I forget to be grateful for and to truly appreciate. Gratitude is one of them. How often do I actually stop and really think about what I have to be grateful for? Not often. It is another of those words which is over used and under appreciated.
I don't think that gratitude is something that we can possess, but something that we need to give. For me that is the only way that it makes sense. You can hold on to love, or hate, but you can only give gratitude. I suppose that gratitude also goes well with humility, which is probably something that all of us could do with a bit more of! Humility is necessary to actually comprehend that we need to be grateful for something.
http://tedxtalks.ted.com/video/TEDxSF-Louie-Schwartzberg-Grati/
I know that I ought to keep a Gratitude Journal to really focus my mind on what I have to be thankful for but I have never done so. Besides which there are days when I find it hard to be grateful for anything, but I feel that this is because I tend to think of big things when, in truth, it is the little things in life that really give it meaning. Yesterday I got to touch an Olympic Torch, and I am grateful for that, but that will only happen once in a lifetime (well actually twice as I touched two) and while it is a great memory I feel that things to be grateful are the regular things which make up our lives.
Today I am grateful for ...
I don't think that gratitude is something that we can possess, but something that we need to give. For me that is the only way that it makes sense. You can hold on to love, or hate, but you can only give gratitude. I suppose that gratitude also goes well with humility, which is probably something that all of us could do with a bit more of! Humility is necessary to actually comprehend that we need to be grateful for something.
http://tedxtalks.ted.com/video/TEDxSF-Louie-Schwartzberg-Grati/
I know that I ought to keep a Gratitude Journal to really focus my mind on what I have to be thankful for but I have never done so. Besides which there are days when I find it hard to be grateful for anything, but I feel that this is because I tend to think of big things when, in truth, it is the little things in life that really give it meaning. Yesterday I got to touch an Olympic Torch, and I am grateful for that, but that will only happen once in a lifetime (well actually twice as I touched two) and while it is a great memory I feel that things to be grateful are the regular things which make up our lives.
Today I am grateful for ...
- That it is not raining, at the moment anyway.
- That I have some great looking veggie to juice in a moment
- The sun just came out
- I don't have to go to work tomorrow
- Feeling happy
Saturday, 14 July 2012
The Olympic Torch Relay
Today I 'touched' the London 2012 Olympic Games when the torch relay came through the New Forest and there was a handover at Brockenhurst College, which is where I work. It is amazing to think that I have got that close to the Olympics. My aunt attended some events the last time the Olympics was held in the UK in 1948, and though I may not get to see an event live (though the sailing events are based in Weymouth just down the coast) I have become a tiny part of the 2012 Olympics.
This is a photo of the Olympic Torch 'kiss' as the flame is passed from one to another, in this case Steve Baker and Ben Pugh. Unfortunately all the professional photographers are allowed to have the prime view and I had to hold the camera up to get a pick so the kiss is slightly off centre, but I got it! The sun came out just at this moment, but we had drizzle, rain and grey cloud as well as the sunshine, but the sun came at just the right moment.
The incoming torch bearer was greeted by a Samba Band made up of local school children and college students and staff, and some of the Dance Students did a piece that they had choreographed themselves. On the playing fields behind the college they had a mini Olympics going on with archery, tennis, table tennis, paralympics etc for people to try.
The most disappointing part was the all pervasive presence of the sponsors, and of Coca Cola in particular. As the London Olympics in particular are supposed to be Inspiring a Generation to take part on sport and a healthier lifestyle it is sad that two of the main sponsors are Coca Cola and McDonalds which are most certainly not about a healthy life style. In fact someone suggested that maybe the Olympic competitors should be made to train on the products of these Official Sponsors. What kind of a healthy message are the Olympic authorities actually sending? How on earth did such food corporations get to have a free rein with creating and marketing food with the sole purpose of making more and more profit and without a care in the world for the health of those who consume their products. They are even allowed to advertise these products as being healthy - ish. In some ways these companies are right that it is the responsibility of parents to make sure that their children have a healthy diet, but there is not a level playing field when they are allowed to direct their advertising at children, and fill their products with ingredients which are proven to have such a negative effect on health.
Although it is a thrill to be about to come so close to the Olympics, I can't help but feel that somewhere it has lost sight of its core ethos. Higher, faster, further and the ideal that it is not the winning but the taking part that is the important thing. Some of the most memorable and moving memories of the Olympics have not been about the winners, but those who never stood a chance of winning, but who had the thrill of representing their country in their event. How many others remember the marathon runners who used to come in ages after the winner and only just made it to the finishing line. Somehow they represented the world far more than the elite winners. They could have been use struggling determinedly to finish the challenge that they had set themselves, and get to represent their country into the bargain. I seem to remember a 400m (or 800 / 1500m) runner from a small country who was disqualified because he was in the outside lane and didn't understand the rules of running on a track; so when the gun went off he took the shortest route which just happened to cut across the other competitors to the inside of the track. Other competitors who had to borrow running shoes or other equipment because they didn't have any. It actually may have been these competitors who produced the best performances by breaking their personal best, or national records by a big margin, when the ultimate winner may not have even run their best time that season. Remember - it is the taking part and not the winning which really matters.
This is a photo of the Olympic Torch 'kiss' as the flame is passed from one to another, in this case Steve Baker and Ben Pugh. Unfortunately all the professional photographers are allowed to have the prime view and I had to hold the camera up to get a pick so the kiss is slightly off centre, but I got it! The sun came out just at this moment, but we had drizzle, rain and grey cloud as well as the sunshine, but the sun came at just the right moment.
The incoming torch bearer was greeted by a Samba Band made up of local school children and college students and staff, and some of the Dance Students did a piece that they had choreographed themselves. On the playing fields behind the college they had a mini Olympics going on with archery, tennis, table tennis, paralympics etc for people to try.
The most disappointing part was the all pervasive presence of the sponsors, and of Coca Cola in particular. As the London Olympics in particular are supposed to be Inspiring a Generation to take part on sport and a healthier lifestyle it is sad that two of the main sponsors are Coca Cola and McDonalds which are most certainly not about a healthy life style. In fact someone suggested that maybe the Olympic competitors should be made to train on the products of these Official Sponsors. What kind of a healthy message are the Olympic authorities actually sending? How on earth did such food corporations get to have a free rein with creating and marketing food with the sole purpose of making more and more profit and without a care in the world for the health of those who consume their products. They are even allowed to advertise these products as being healthy - ish. In some ways these companies are right that it is the responsibility of parents to make sure that their children have a healthy diet, but there is not a level playing field when they are allowed to direct their advertising at children, and fill their products with ingredients which are proven to have such a negative effect on health.
Although it is a thrill to be about to come so close to the Olympics, I can't help but feel that somewhere it has lost sight of its core ethos. Higher, faster, further and the ideal that it is not the winning but the taking part that is the important thing. Some of the most memorable and moving memories of the Olympics have not been about the winners, but those who never stood a chance of winning, but who had the thrill of representing their country in their event. How many others remember the marathon runners who used to come in ages after the winner and only just made it to the finishing line. Somehow they represented the world far more than the elite winners. They could have been use struggling determinedly to finish the challenge that they had set themselves, and get to represent their country into the bargain. I seem to remember a 400m (or 800 / 1500m) runner from a small country who was disqualified because he was in the outside lane and didn't understand the rules of running on a track; so when the gun went off he took the shortest route which just happened to cut across the other competitors to the inside of the track. Other competitors who had to borrow running shoes or other equipment because they didn't have any. It actually may have been these competitors who produced the best performances by breaking their personal best, or national records by a big margin, when the ultimate winner may not have even run their best time that season. Remember - it is the taking part and not the winning which really matters.
Thursday, 12 July 2012
The limitations of cancer
Yes I know that sounds like an oxymoron but I just came across a definition which puts into words many of the things that I think about cancer. I came to the conclusion a while ago that I wasn't going to give cancer any more power over my life than it already had. It has taken a lot already and I am not prepared to give it more than I absolutely have to. It craves the power to control everything about us, and it succeeded with me for a while. Then I learned to push it away each time it tried to return to the centre of my world and, although I know it is still there on the edge, now it is not at the vortex of my mind. After all cancer has its limitations and although it may have control over some of our cells it ain't got them all. Mindfulness has helped me regain control and focus on this exact moment; a moment in which I am safe, well and peaceful.
Cancer is so limited…
It cannot cripple Love
It cannot shatter Hope
It cannot corrode Faith
It cannot destroy Peace
It cannot kill Friendship
It cannot suppress Memories
It cannot silence Courage
It cannot invade the Soul
It cannot steal Eternal Life
It cannot conquer the Spirit
Author Unknown
Cancer is so limited…
It cannot cripple Love
It cannot shatter Hope
It cannot corrode Faith
It cannot destroy Peace
It cannot kill Friendship
It cannot suppress Memories
It cannot silence Courage
It cannot invade the Soul
It cannot steal Eternal Life
It cannot conquer the Spirit
Author Unknown
Monday, 9 July 2012
It's 6.15am and I've been up for a while.
I think I totally overdosed on sugar yesterday! At work it was the first day of the Staff Training Week yesterday and they were doing free coffee and danish in the staff room of the college. We went down and got a load, then someone got a load more, then I had to go and buy some chocolates for someone who is leaving and got some for my self and ate a load of them. You KNOW what it is like, I am sure. It was partly boredom at work yesterday because I had nothing to do but wait around for the Principal's end of the academic year All Staff Meeting, and do a display for Wednesday to try and explain to the teaching staff what the support staff do to support their teaching.
A couple of years ago on a staff training day we had to sit through a morning presentation of how wonderful the teaching staff are, and how we minnions support their teaching. When they asked for feed-back quite a few of us suggested that they might like to do the same, but the other way round; tell the teaching staff how wonderful the support staff are, and what we do to enable them to teach. They really don't have a clue and since they don't understand what goes on on the non-teaching side of college life. We had a New Student Day last week for those learners who will be starting in September and when they were showing their group round it was a quick walk straight through "here they do travel and attendance", so we started to give our own guide to what goes on there.
Anyway, my alarm has just gone off and I must get ready for work! I am thinking smoothie with blueberries for breakfast.
A couple of years ago on a staff training day we had to sit through a morning presentation of how wonderful the teaching staff are, and how we minnions support their teaching. When they asked for feed-back quite a few of us suggested that they might like to do the same, but the other way round; tell the teaching staff how wonderful the support staff are, and what we do to enable them to teach. They really don't have a clue and since they don't understand what goes on on the non-teaching side of college life. We had a New Student Day last week for those learners who will be starting in September and when they were showing their group round it was a quick walk straight through "here they do travel and attendance", so we started to give our own guide to what goes on there.
Anyway, my alarm has just gone off and I must get ready for work! I am thinking smoothie with blueberries for breakfast.
Waiting for the other shoe to fall ...
I belong to a couple of advanced breast cancer forums and recently there has been a spate of deaths of members with Stage IV breast cancer. Just in case anyone doesn't know what this means, here is a hint ... there is no Stage V breast cancer. These deaths, combined with another post, have brought into focus the guilt that I feel that I have not had a progression in four and a half years, and that I am still alive. In short, I am still waiting for the other shoe to fall. I guess this can also be called Survivor's Guilt. It is not only guilt it is confusion, according to statistics I should be dead by now, so how do I deal with this unexpected time.
The unpredictability of this disease is one of the difficult things to live with. I know that I looked at statistics when I first had access to the internet after my diagnosis and all it did was scare the b'Jesus out of myself. It is not a disease that has a specific time scale, "the fever will break on the third day" type of thing, but we all incontrovertably know that it will get us one day, so when things are stable it can be a bit unnerving. Since I had my right hip replaced in January 2008, because the cancer had spread to my bones and caused a pathological fracture, the scans have shown that the cancer has retreated or stayed stable. The recent blip where the ureter problem could have been progression has really been the only serious threat to that stability. So why do I feel guilty when I hear about the progression of other people's cancer?
The thing is that when you are told that your cancer is incurable it becomes fixed in your mind and there is an expectation that you will not be able to continue a normal life. Although my diagnosis with Stage II in September 2007 (which would have been Stage IV if they had listened to me) I met with calm acceptance. My mother had breast cancer when she was about 54 and had a mastectomy, but did not have a recurrance and died 15 years later of something unrelated. My expectation was that I would be the same and I was not really phased by this diagnosis. So I don't automatically consider cancer to be a death sentence even though I looked after a friend 8 years ago when she was terminally ill with stomach cancer. But to be told that your cancer is incurable is a whole other ball game, and it was one that was not so easy to adjust to, and in particular the concept that the oncologists are not trying to save your life; they are giving you palliative care as and when necessary. So the concept develops in your mind that your time is limited, but then time passes and you are still here and more than holding your own. This is bewildering and takes time to adjust to. All of us do this in different ways and there is no set way to do this, but this is something that no one tells you, and I for one felt like a wimp and a failure that I couldn't maintain an outward demeanor of being completely in control.
One of the first things I always tell anyone who has just been told they are Stage IV is that their sense of shock and dispair is completely normal. So maybe survivor guilt is also completely normal? Maybe especially for me who has had depression for many years and who has even begged God to let me die. I have no husband, no children, so why are people who have someone close and children dying while I stay alive? Is it because I have actually survived years of depression by having this inner streak of determination to just keep going? To keep on putting one foot in front of another? Maybe this is God's way of letting me know that I actually do value being alive by teaching me that there is a limit on how long I will live.
Let's face it, how many of us have really thought about this when we are younger? My father died when I was just about 18, my mother when I was 29, but they were the older generation. Time shows you that you become the next older generation eventually especially if you have a family who are spaced out so much in years. My younger neice is 17, I am 52, my mother would have been 91, and my father 113! One of my great-grandfather's was born in 1829. Until we are faced by our own mortality the future seems to be, well, just there stretching out in front of us. There is the feeling that certain things can be put off because we can do that next year, or the year after ... and on it goes.
I don't think that being Stage IV takes away your future so much as it brings focus to the present. It makes it more important not to waste time on things that will not inspire us; it makes you see the need to just cut the crap! But for those who have young children I feel as though they should have my extra time that the stats say I don't have. But there again maybe this is showing me that I ought to get some joy out of life by living for today.
The unpredictability of this disease is one of the difficult things to live with. I know that I looked at statistics when I first had access to the internet after my diagnosis and all it did was scare the b'Jesus out of myself. It is not a disease that has a specific time scale, "the fever will break on the third day" type of thing, but we all incontrovertably know that it will get us one day, so when things are stable it can be a bit unnerving. Since I had my right hip replaced in January 2008, because the cancer had spread to my bones and caused a pathological fracture, the scans have shown that the cancer has retreated or stayed stable. The recent blip where the ureter problem could have been progression has really been the only serious threat to that stability. So why do I feel guilty when I hear about the progression of other people's cancer?
The thing is that when you are told that your cancer is incurable it becomes fixed in your mind and there is an expectation that you will not be able to continue a normal life. Although my diagnosis with Stage II in September 2007 (which would have been Stage IV if they had listened to me) I met with calm acceptance. My mother had breast cancer when she was about 54 and had a mastectomy, but did not have a recurrance and died 15 years later of something unrelated. My expectation was that I would be the same and I was not really phased by this diagnosis. So I don't automatically consider cancer to be a death sentence even though I looked after a friend 8 years ago when she was terminally ill with stomach cancer. But to be told that your cancer is incurable is a whole other ball game, and it was one that was not so easy to adjust to, and in particular the concept that the oncologists are not trying to save your life; they are giving you palliative care as and when necessary. So the concept develops in your mind that your time is limited, but then time passes and you are still here and more than holding your own. This is bewildering and takes time to adjust to. All of us do this in different ways and there is no set way to do this, but this is something that no one tells you, and I for one felt like a wimp and a failure that I couldn't maintain an outward demeanor of being completely in control.
One of the first things I always tell anyone who has just been told they are Stage IV is that their sense of shock and dispair is completely normal. So maybe survivor guilt is also completely normal? Maybe especially for me who has had depression for many years and who has even begged God to let me die. I have no husband, no children, so why are people who have someone close and children dying while I stay alive? Is it because I have actually survived years of depression by having this inner streak of determination to just keep going? To keep on putting one foot in front of another? Maybe this is God's way of letting me know that I actually do value being alive by teaching me that there is a limit on how long I will live.
Let's face it, how many of us have really thought about this when we are younger? My father died when I was just about 18, my mother when I was 29, but they were the older generation. Time shows you that you become the next older generation eventually especially if you have a family who are spaced out so much in years. My younger neice is 17, I am 52, my mother would have been 91, and my father 113! One of my great-grandfather's was born in 1829. Until we are faced by our own mortality the future seems to be, well, just there stretching out in front of us. There is the feeling that certain things can be put off because we can do that next year, or the year after ... and on it goes.
I don't think that being Stage IV takes away your future so much as it brings focus to the present. It makes it more important not to waste time on things that will not inspire us; it makes you see the need to just cut the crap! But for those who have young children I feel as though they should have my extra time that the stats say I don't have. But there again maybe this is showing me that I ought to get some joy out of life by living for today.
Thursday, 5 July 2012
Clutter everywhere
I desparately need to de-clutter my world, but I am beginning to wonder if I have a resident Clutter Maker in the house because no matter how much I chuck out there just seems to be piles more of it. I turn my back for a couple of days and a pile has appeared where I had just discovered the surface of the piece of furniture. The really weird thing is that I don't buy many things, so where is it coming from? Why is it here? Dear old Clutter Maker just goes into overdrive some times. Does he think he is one of Santa's Little Helpers the day before Christmas who has missed an order of toys for the Big Day?
How on earth do some people manage to keep a neat and orderly house that looks like something out of a magazine? But, there again, I don't think that I would really want to live in a house like that. It must take a lot of effort to be that perfect and to be honest I just can't be bothered to waste my time trying to be perfect. Also, what is perfection in the eyes of one is not perfection to another. Think of all those beautiful people who still see only the imperfections when they look in the mirror. The thin people who think they are fat, or have put on a pound or two and think that is a huge problem. I can't remember which celebrity I saw a photo of recently, probably one of the many 'famous' people I have never heard of, and the thought came in to my mind of how difficult it must be for her to get older and lose that perfect face. It must be quite oppressive to be judged on how beautiful you are, and then to have to age ... though there is plastic surgery to help preserve your looks forever.
I suppose that for some people their house is an expression of their personal style and their social aspirations. For me it is the place where I live, though it is probably as much an extension of my personality as a perfect home. The strange thing is that at work I am very organised, but then that is a space which is easier to retain control over. As I have had to start clearing all my stuff out of the office I have been in for the last 7 years it has maybe surprised me a little that even here I have accumulated clutter. The thing is that I feel guilty about just disposing of things that could be of use in another place, or at another time. It was my parent's 'make do and mend' mentality, and the fact that as soon as I get rid of something I need it again. It is all the fault of that chap Sod who made a law some time ago!
Sunday is a good day for me to do some de-cluttering because the bin men come early on a Monday morning so I don't have the time to rethink my decision to dispose of certain items (I can hear the whispers from my parents "keep it, it might come in useful"). Half the battle is actually being able to get it out of the house and out of reach. Otherwise it can just moving itself from one place to another in a bid to look as though it could be of use to me in the future, and convince me that it should not be chucked out. Sneaky stuff this clutter.
Why do I collect recipes when I know that it is unlikely that I will get around to using them? Why do I keep buying books, when I already have a load that I haven't read yet?
Answers on a postcard...
How on earth do some people manage to keep a neat and orderly house that looks like something out of a magazine? But, there again, I don't think that I would really want to live in a house like that. It must take a lot of effort to be that perfect and to be honest I just can't be bothered to waste my time trying to be perfect. Also, what is perfection in the eyes of one is not perfection to another. Think of all those beautiful people who still see only the imperfections when they look in the mirror. The thin people who think they are fat, or have put on a pound or two and think that is a huge problem. I can't remember which celebrity I saw a photo of recently, probably one of the many 'famous' people I have never heard of, and the thought came in to my mind of how difficult it must be for her to get older and lose that perfect face. It must be quite oppressive to be judged on how beautiful you are, and then to have to age ... though there is plastic surgery to help preserve your looks forever.
I suppose that for some people their house is an expression of their personal style and their social aspirations. For me it is the place where I live, though it is probably as much an extension of my personality as a perfect home. The strange thing is that at work I am very organised, but then that is a space which is easier to retain control over. As I have had to start clearing all my stuff out of the office I have been in for the last 7 years it has maybe surprised me a little that even here I have accumulated clutter. The thing is that I feel guilty about just disposing of things that could be of use in another place, or at another time. It was my parent's 'make do and mend' mentality, and the fact that as soon as I get rid of something I need it again. It is all the fault of that chap Sod who made a law some time ago!
Sunday is a good day for me to do some de-cluttering because the bin men come early on a Monday morning so I don't have the time to rethink my decision to dispose of certain items (I can hear the whispers from my parents "keep it, it might come in useful"). Half the battle is actually being able to get it out of the house and out of reach. Otherwise it can just moving itself from one place to another in a bid to look as though it could be of use to me in the future, and convince me that it should not be chucked out. Sneaky stuff this clutter.
Why do I collect recipes when I know that it is unlikely that I will get around to using them? Why do I keep buying books, when I already have a load that I haven't read yet?
Answers on a postcard...
Humour. One day it's funny, the next it is not.
Humour is a very individual thing, but have you ever noticed how your sense of humour can change from day to day? The death of Eric Sykes made me start thinking about humour and how it can reflect our moods.
I remember watching Blazing Saddles once and crying with laughter in places; but on other occassions I have watched it and just thought how silly it is. There again, we have days where just about everything is amusing and that is not just the Fluoxitine talking! I do have some things that I can return to time and again and still find funny. The Key episode of Yes, Prime Minister is one of the ones that gets me every time, as do just about any of Sir Humphrey's tongue twisting monologues. How on earth he ever managed to remember them, I just don't know. There are jokes that always seem to be funny, even if a bit groan worthy. I love the jokes on the Penguin biscuit wrappers because they are so silly, and a bit like the Antarctic version of Christmas cracker jokes.
Wouldn't it be wonderful to be able to see the funny side of things all the time? Sometimes I just get so lost in the stress of the moment that it can be hard to get out of it and see the funny side of anything. I was figuring out how little I would be earning from my new post at work, I figure I am going to be about 40% worse off when I already had a low paid job, but on the bright side I will not be paying income tax on it as it is below my personal allowance. I was starting to get a bit stressed out about it all and getting grumpy, in short getting into one of those situations that I find it difficult to snap out of. So I have been trying to remind myself that I don't really need that much in life. Food, pay my bills, I don't have a mortgage or rent to pay as I own my house and I live in a beautiful part of the world...is there really much more that each of us needs in life?
I remember watching Blazing Saddles once and crying with laughter in places; but on other occassions I have watched it and just thought how silly it is. There again, we have days where just about everything is amusing and that is not just the Fluoxitine talking! I do have some things that I can return to time and again and still find funny. The Key episode of Yes, Prime Minister is one of the ones that gets me every time, as do just about any of Sir Humphrey's tongue twisting monologues. How on earth he ever managed to remember them, I just don't know. There are jokes that always seem to be funny, even if a bit groan worthy. I love the jokes on the Penguin biscuit wrappers because they are so silly, and a bit like the Antarctic version of Christmas cracker jokes.
Wouldn't it be wonderful to be able to see the funny side of things all the time? Sometimes I just get so lost in the stress of the moment that it can be hard to get out of it and see the funny side of anything. I was figuring out how little I would be earning from my new post at work, I figure I am going to be about 40% worse off when I already had a low paid job, but on the bright side I will not be paying income tax on it as it is below my personal allowance. I was starting to get a bit stressed out about it all and getting grumpy, in short getting into one of those situations that I find it difficult to snap out of. So I have been trying to remind myself that I don't really need that much in life. Food, pay my bills, I don't have a mortgage or rent to pay as I own my house and I live in a beautiful part of the world...is there really much more that each of us needs in life?
Wednesday, 4 July 2012
It's the Fourth of July - Independence Day
Happy Independence Day to the United States of America. Hope you all have a great day if you are celebrating with others, or a quiet day if you are chilling out instead.
When the 13 states declared UDI from the Crown they decided that they were going to do things a bit differently from the 'mother' country. They got rid of things that they thought they no longer needed and declared that it was going to be a new country, based on many principles from the old, but with their own twist. Of course things have not always gone smoothly, and the view of what the Declaration of Independence means now is different from those who wrote it, because society has moved on and what is considered to be right and wrong have changed. Some of those who wrote the Declaration were slave owners who didn't necessarily see it as being wrong. Today is is astonishing, to me at least, that anyone could have thought that was right but you can't really judge the past by the attitudes of the present.
I think that many of us must feel that cancer has forced us to declare Independence from the person that we were before our diagnosis. It is not necessarily an independence that we would have wanted, or that we aspired to, as maybe it didn't necessarily suit all those living in the 13 States. Some decided to remain British and left for the home land, or Canada etc. but others adapted, with or without complete enthusiam. But they all would have had to alter their way of life to accomodate their new reality. We have done the same because our lives will never be the same, but we do need to embrace the changes that are forced on us.
When such a change takes place I believe we have to change or give up. I don't think that any of us can go on the in the same way as before because, certainly if you are Stage IV, there is no real promise of things being the same again. There is no expectation of 'after treatment is finished'. I have not had to have very intense treatment since my diagnosis, just a couple of hip replacements and a continuation of hormonal treatment with bisphosphonates to strengthen my bones (Femara and Zoledronic Acid, aka Zometa, if you want to be technical). It is the expectation of a future stretching out in front of you, and which you take completely for granted that has gone. It makes you think.
On one level this can be liberating because I no longer have to really worry about the future. I used to wonder what I would do when I got very old or when I retired and in some ways that was unsettling and scary. What I also realised was how much of the present moment I was wasting worrying about the future! Why? Why do any of us do this? What is the point of worrying about something over which we have no control and which might never be? We have no idea what is going to happen between now and being 60, or 70, or 80... We do have some idea what is going to happen today because we have a certain amount of control over it. I think I have managed to adapt to my new reality. That is not to say that it has been an easy, or a smooth path. There have been many tears and moments of dispair and these can still occur in my life; but I have come to accept them and realise that I also need to experience those bad moments to be able to get to the calmer moments of contentment and happiness. We should all declare independence from our former lives, which does not mean forgetting and rejecting everything that we have experienced but accepting the new state and embracing it and all the potential that it holds.
When the 13 states declared UDI from the Crown they decided that they were going to do things a bit differently from the 'mother' country. They got rid of things that they thought they no longer needed and declared that it was going to be a new country, based on many principles from the old, but with their own twist. Of course things have not always gone smoothly, and the view of what the Declaration of Independence means now is different from those who wrote it, because society has moved on and what is considered to be right and wrong have changed. Some of those who wrote the Declaration were slave owners who didn't necessarily see it as being wrong. Today is is astonishing, to me at least, that anyone could have thought that was right but you can't really judge the past by the attitudes of the present.
I think that many of us must feel that cancer has forced us to declare Independence from the person that we were before our diagnosis. It is not necessarily an independence that we would have wanted, or that we aspired to, as maybe it didn't necessarily suit all those living in the 13 States. Some decided to remain British and left for the home land, or Canada etc. but others adapted, with or without complete enthusiam. But they all would have had to alter their way of life to accomodate their new reality. We have done the same because our lives will never be the same, but we do need to embrace the changes that are forced on us.
When such a change takes place I believe we have to change or give up. I don't think that any of us can go on the in the same way as before because, certainly if you are Stage IV, there is no real promise of things being the same again. There is no expectation of 'after treatment is finished'. I have not had to have very intense treatment since my diagnosis, just a couple of hip replacements and a continuation of hormonal treatment with bisphosphonates to strengthen my bones (Femara and Zoledronic Acid, aka Zometa, if you want to be technical). It is the expectation of a future stretching out in front of you, and which you take completely for granted that has gone. It makes you think.
On one level this can be liberating because I no longer have to really worry about the future. I used to wonder what I would do when I got very old or when I retired and in some ways that was unsettling and scary. What I also realised was how much of the present moment I was wasting worrying about the future! Why? Why do any of us do this? What is the point of worrying about something over which we have no control and which might never be? We have no idea what is going to happen between now and being 60, or 70, or 80... We do have some idea what is going to happen today because we have a certain amount of control over it. I think I have managed to adapt to my new reality. That is not to say that it has been an easy, or a smooth path. There have been many tears and moments of dispair and these can still occur in my life; but I have come to accept them and realise that I also need to experience those bad moments to be able to get to the calmer moments of contentment and happiness. We should all declare independence from our former lives, which does not mean forgetting and rejecting everything that we have experienced but accepting the new state and embracing it and all the potential that it holds.
Monday, 2 July 2012
100th Post - reflections on work
I guess this ought to be something earth shattering as my blog moves into triple numbers with the 100th post. It should be about looking forward to a brave new future with a new job, but I have doubts that I feel that confident about the future which is, I suppose, why I do not really focus on it very much.
There are a couple of things that have made me feel a bit more reflective recently. One is that I have been told that I have to clear my stuff out of the office where I have worked for the last 6 years as someone else will be taking over the office now that the Attendance Team, as such, is to be dismantled. It feels rather strange to be doing this because I don't know where I will be moved to, or even if I will have a permanent place to work from. Where will I be able to put down my teapot and mug? Where will I be able to keep my organic green tea? Where can I keep a few bits and bobs?
If I don't have anywhere then in some ways it will be quite nice. Everyone knows that I keep my stock of envelopes etc replenished, and consequently they are always coming to ask if I have such and such. Well in future they will have to make the effort to go and get it for themselves. When I got back to work after my recent bout of depression I inevitably found that everything had been used up and not replaced, so one of the first things I had to do was go down to Reprographics to restock because those who have no problem walking can't be bothered to do so. It has however made me get rid of some junk that has been hanging around because I might need it some time. Well actually, no I won't, and today I wasn't feeling in the mood to pass stuff on to others in my area but returned envelopes I won't need to Repro. In some ways it has been a bit unsettling as I feel a little bit as though I am just being chucked out because in the future I will be the lowest of the low in the area, and on the lowest pay grade and with my hours cut by a third.
The other thing that makes me a bit reflective is wondering what the future at work holds. None of us really feel that the management who have masterminded the restructure really have much of an idea what they are going to do with us all now that this has been achieved. I don't think this has unsettled me as much as it has other people. To a certain extent I just go with the flow a bit these days, but almost inevitably you pick up vibes from others in the area. I have been trying to convince them that it is up to our employer to tell us what they want us to do, and to train us to do it; but the whole not knowing what will be going on is really starting to get to us. In someways it is not as immediate for me as it is for others as they will be rolling straight from their current to their new posts on 1 August, whereas I won't be back until the beginning of the new academic year, after the end of the staff training day next week. But still it makes me wonder if I will be able to do the new job, whatever exactly it is, and whether I really want to do it. Do I need this hassle?
A major part of my job will be phoning students and parents about any attendance issues. Do I have the temperament to do this? Do I really want to listen to their angst about various issues? In so many ways I can understand why so many students get anxiety and depression, but I also know that it is the student themself who is the only one who can really do anything to control the problem. After all I stopped going to school when I was 14 years old because of depression, but in the mid-seventies there really wasn't any help and support, whereas now they seem to have it coming at them from all directions. In some ways that angers me because I feel that I was deserted by my 'friends', who completely forgot that I existed, and by the education authorities. I don't want the learners at college to end up as I did because I don't think that enough is done to make them realise that they are not alone, and face the fact they are the ones who have to deal with this. No one else can do it for them. At University in my 40s I began to have another breakdown, but this time there were counsellors to talk to and it was only then that I realised that I was not the only one who had that kind of experience at school. In fact I was about 40 before I became aware that there was such as thing as school phobia, and that it was a recognised problem. When I stopped going to school it destroyed my life in so many ways and it took me 25 years to get the courage to try to get the qualifications to get to university.
It is a classic case of 'if I had only known then, what I know now'! I feel that the students are now being isolated in a different way, by laws of confidentiality and giving them too much control over what others should, or should not, know. I feel they are also being let down by there not being a central place where staff can go to find this information because different people record things in different ways and different places of the student's record. They want the best of both worlds, that no one should know, but then they and their parents get upset when no one knows that they have a problem.
One thing that I really feel quite passionately could be of great help is Mindfulness Meditation as a coping strategy. I have actually even considered offering to teach this. I have found it to be such a profoundly useful technique that it should be passed on. Also I feel that if there was a way for them to find out other students in the same position it may help to decrease their isolation, and thereby their anxiety and depression. I know that the sense of isolation of being Stage IV is very difficult. I really wish there were others who have mets that I could speak to about this whole thing. Forums are really helpful, but they are not quite the same thing as the immediacy of talking face to face with someone experiencing the same thing. However this doesn't seem to be a very British thing to do.
So there you are. I am a bit adrift at the moment, but in the end I just can't allow myself to focus on this too much because it is the here and now that matters...and I need to get to bed. I have work in the morning.
There are a couple of things that have made me feel a bit more reflective recently. One is that I have been told that I have to clear my stuff out of the office where I have worked for the last 6 years as someone else will be taking over the office now that the Attendance Team, as such, is to be dismantled. It feels rather strange to be doing this because I don't know where I will be moved to, or even if I will have a permanent place to work from. Where will I be able to put down my teapot and mug? Where will I be able to keep my organic green tea? Where can I keep a few bits and bobs?
If I don't have anywhere then in some ways it will be quite nice. Everyone knows that I keep my stock of envelopes etc replenished, and consequently they are always coming to ask if I have such and such. Well in future they will have to make the effort to go and get it for themselves. When I got back to work after my recent bout of depression I inevitably found that everything had been used up and not replaced, so one of the first things I had to do was go down to Reprographics to restock because those who have no problem walking can't be bothered to do so. It has however made me get rid of some junk that has been hanging around because I might need it some time. Well actually, no I won't, and today I wasn't feeling in the mood to pass stuff on to others in my area but returned envelopes I won't need to Repro. In some ways it has been a bit unsettling as I feel a little bit as though I am just being chucked out because in the future I will be the lowest of the low in the area, and on the lowest pay grade and with my hours cut by a third.
The other thing that makes me a bit reflective is wondering what the future at work holds. None of us really feel that the management who have masterminded the restructure really have much of an idea what they are going to do with us all now that this has been achieved. I don't think this has unsettled me as much as it has other people. To a certain extent I just go with the flow a bit these days, but almost inevitably you pick up vibes from others in the area. I have been trying to convince them that it is up to our employer to tell us what they want us to do, and to train us to do it; but the whole not knowing what will be going on is really starting to get to us. In someways it is not as immediate for me as it is for others as they will be rolling straight from their current to their new posts on 1 August, whereas I won't be back until the beginning of the new academic year, after the end of the staff training day next week. But still it makes me wonder if I will be able to do the new job, whatever exactly it is, and whether I really want to do it. Do I need this hassle?
A major part of my job will be phoning students and parents about any attendance issues. Do I have the temperament to do this? Do I really want to listen to their angst about various issues? In so many ways I can understand why so many students get anxiety and depression, but I also know that it is the student themself who is the only one who can really do anything to control the problem. After all I stopped going to school when I was 14 years old because of depression, but in the mid-seventies there really wasn't any help and support, whereas now they seem to have it coming at them from all directions. In some ways that angers me because I feel that I was deserted by my 'friends', who completely forgot that I existed, and by the education authorities. I don't want the learners at college to end up as I did because I don't think that enough is done to make them realise that they are not alone, and face the fact they are the ones who have to deal with this. No one else can do it for them. At University in my 40s I began to have another breakdown, but this time there were counsellors to talk to and it was only then that I realised that I was not the only one who had that kind of experience at school. In fact I was about 40 before I became aware that there was such as thing as school phobia, and that it was a recognised problem. When I stopped going to school it destroyed my life in so many ways and it took me 25 years to get the courage to try to get the qualifications to get to university.
It is a classic case of 'if I had only known then, what I know now'! I feel that the students are now being isolated in a different way, by laws of confidentiality and giving them too much control over what others should, or should not, know. I feel they are also being let down by there not being a central place where staff can go to find this information because different people record things in different ways and different places of the student's record. They want the best of both worlds, that no one should know, but then they and their parents get upset when no one knows that they have a problem.
One thing that I really feel quite passionately could be of great help is Mindfulness Meditation as a coping strategy. I have actually even considered offering to teach this. I have found it to be such a profoundly useful technique that it should be passed on. Also I feel that if there was a way for them to find out other students in the same position it may help to decrease their isolation, and thereby their anxiety and depression. I know that the sense of isolation of being Stage IV is very difficult. I really wish there were others who have mets that I could speak to about this whole thing. Forums are really helpful, but they are not quite the same thing as the immediacy of talking face to face with someone experiencing the same thing. However this doesn't seem to be a very British thing to do.
So there you are. I am a bit adrift at the moment, but in the end I just can't allow myself to focus on this too much because it is the here and now that matters...and I need to get to bed. I have work in the morning.
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