Polution of one sort or another is all around us, and there are probably few places on the planet that don't have direct polution problems.
I think everyone has noticed how those at the top of companies and banks think only of profits and bonuses, and what is in it for them. By using chemicals that are proven to be damaging to the environment and dangerous to people simply because they can make more profit is just plain immoral. In America there is a lot of publicity about the fact that the Susan G Komen for the Cure which is just about the biggest breast cancer charity in the world and which claims to be funding research into finding a cure for breast cancer. They have just launched a perfume which contains chemicals which are known to be a health hazzard, and which they are not declaring on the labelling! Amazing. Are these people completely insane? Raise money with a product which damages health. The more you look into the whole cancer industry the more you have to question the motive behind all of this.
There are non-toxic traditional medicines which have been proven to have anti-cancer properties which have been banned by the EU, and the USA looks to be following in their disgraceful footsteps. These are precisely the sort of things that governments should be funding research into, and encouraging their use as a first line of treatment. They are NON-TOXIC and easily tolerated by patients, but instead these patients are used as guinea pigs for pharmaceutical companies who produce toxic drugs which damage patient's health more often than they produce positive results. Many chemotherapies produce side effects which need to be controlled by more drugs, which cause side effects which need to be controlled with even more drugs...and so it goes on. They claim that Vitamin C given by IV is dangerous and that this vitamin shortened the life of Linus Pauling, a strong proponent of the efficacy of Vitamin C. The double Nobel winner died at the age of 94! Shortened his life? That I should live so long!
Of course these traditional medicines and treatments are from naturally occurring plants, and so can't make big bucks for the pharmaceutical industry. They would be cheap to produce and easy to give, which is another big draw-back (NOT) when the NHS is struggling with the burden of the cost of cancer treatment, as are all countries. When these pharmaceutical drugs go generic they can be produced for 20% of the price in some cases, but the biggest pharmaceutical companies make profits that dwarf the top Fortune 500 companies in America. Please note that these are Profits, not research and development costs.
Yet the medical industry insists that the only viable treatments for cancer are the Big Three of surgery, chemo and radiation. When it was finally recognised that I had metastatic breast cancer (cancer which has spread and is considered incurable) I was alarmed why I was told that the only treatment offered to me after the surgery to replace my hip (destroyed by cancer) was hormone treatment, and the aim would be palliative, not curative. I was 47 years old. This made me go out and find my own sources of hope and I was 'lucky' that I knew there were other ideas out there because of a friend who died of stomach cancer because of the information that she had been sent by other friends. I am now grateful that I was not put on chemo because it was not considered to be "appropriate at this time". What I found was that there is a mound of scientific research and evidence of how these things work and how supportive these strategies are of the body as it tries to overcome the cancer. There are no guaranteed treatments, but there are those that are kind to the body.
So why will conventional Western medicine not even consider these strategies? Since when does science have all the answers? Science has given us so much, but it has also given the world the nuclear bomb, the arms and biological weapons which have killed millions, the chemicals which are contributing hugely to the explosion in the incidence of cancer in the modern world. The Holocaust would not have been so destructive if it hadn't been for the gas that was developed which murdered millions. We truly do not need more ways of destroying the human race or the planet, we are doing a good enough job already. Surely chemo and radiotherapy should be held in reserve when all other treatments have stopped working rather than being used first, so that when patients in despairation turn to the 'alternative' sources when their body has already been ravaged beyond repair by these toxic treatments.
Another part of a supportive strategy that is missing is support in dealing with a diagnosis of incurable cancer. The impact of being told that there is no cure, no hope of survival in the long term is enormous and yet the mental ability to deal with this is a huge part of enabling your body to work against this disease. How often do we all project and prophesy what will happen, only to see it come true? Being about to come to terms with my disease, and being able to accept that cancer is a part of my life, and will be for the rest of my life no matter how long that is, has been the hardest part of this journey. Taking the power to control your life away from cancer and returning it to yourself is not easy, but I truly believe that I am now happier and more content than I have ever been in my life. The power of my heart, mind, soul and personality is greater than the disease. Cancer does not have me, I have the cancer, it is something that I am LIVING with much more than I am dying from.
Thursday, 29 September 2011
Wednesday, 28 September 2011
Think before you Pink
Who really makes money out of the Pink Ribbon industry? How much actually goes towards research?
The silly season is about to explode on us with Breast Cancer Awareness Month in October. So many things will be pinked, and will promise to donate 'x' amount to a charity, but note that many of them will say that they will donate a maximum of £xxx to that charity. So if the amount that they raise from the sale of those pinked products is more than that they will be pocketing the difference as well as all the money from the boost in sales from those who think they are supporting breast cancer charities and research. In fact I have become rather jaded about charities as a whole and cancer charities in particular. I would love to feel that the money I give is really achieving something, but I am not convinced that it is. I asked Cancer Research UK how much of their research budget was spent directly into research into metastatic cancer of any sort. It was about 4%! Metastatic cancer is the cancer which KILLS, this is what people die of and they direct 4% of their research budget to it.
I know that it is wrong that people automatically think that cancer is a death sentence, it is not, but there again too much of the breast cancer charity 'industry' likes to portray it as a curable form of cancer which is all about 'survivors'. The likelihoood that I will survive it for another 6 years is statistically about 2%. I am a metavivor, a term coined by an American BC website/charity, which more accurately describes my situation. I am living with metastatic (or secondary) cancer.
For thousands of people it is about living with breast cancer rather than surviving a long time with no evidence of disease. It is about quality of life and knowing that you have to make the most of each day at a time. The fact that there are companies that only see this disease as a source of profit is wrong. Is this what Western countries are really about - profit? Destroying the world...for profit...destroying people's health...for profit...having more and more things which we really don't need. We should have the things we need and occassionally have the things we want, and not the other way round.
The silly season is about to explode on us with Breast Cancer Awareness Month in October. So many things will be pinked, and will promise to donate 'x' amount to a charity, but note that many of them will say that they will donate a maximum of £xxx to that charity. So if the amount that they raise from the sale of those pinked products is more than that they will be pocketing the difference as well as all the money from the boost in sales from those who think they are supporting breast cancer charities and research. In fact I have become rather jaded about charities as a whole and cancer charities in particular. I would love to feel that the money I give is really achieving something, but I am not convinced that it is. I asked Cancer Research UK how much of their research budget was spent directly into research into metastatic cancer of any sort. It was about 4%! Metastatic cancer is the cancer which KILLS, this is what people die of and they direct 4% of their research budget to it.
I know that it is wrong that people automatically think that cancer is a death sentence, it is not, but there again too much of the breast cancer charity 'industry' likes to portray it as a curable form of cancer which is all about 'survivors'. The likelihoood that I will survive it for another 6 years is statistically about 2%. I am a metavivor, a term coined by an American BC website/charity, which more accurately describes my situation. I am living with metastatic (or secondary) cancer.
For thousands of people it is about living with breast cancer rather than surviving a long time with no evidence of disease. It is about quality of life and knowing that you have to make the most of each day at a time. The fact that there are companies that only see this disease as a source of profit is wrong. Is this what Western countries are really about - profit? Destroying the world...for profit...destroying people's health...for profit...having more and more things which we really don't need. We should have the things we need and occassionally have the things we want, and not the other way round.
Wednesday, 21 September 2011
Seeing it in black and white
My left hip has been deteriotating a lot recently and at the chemo clinic yesterday I got a copy of the referral letter that my oncologist has sent to my GP. In it he states that "she has a limited life expectancy, it would be appropriate to push for this to be done as a matter of urgency". Gulp. That gives me a cold feeling actually seeing it in black and white. I realise that he is trying to get things moved along more quickly, but it is still spooky. At least this time the problem is only osetoarthritis in a hip deformed from birth, it is not the really serious problem that did for my right hip, so there is some good news in this.
I don't think of my life in terms of how long I have to live any more. My uncle died earlier this year at the age of 96, my aunt is 87 (siblings of my mother) but these are just numbers. Does it really matter that I have a limited life expectancy? No is the answer. I know that my life has not been a sparkling 'success', I am not famous, beautiful, wealthy and I haven't really achieved much in life, but I rather think that my life has been a success in a different way. I have done the best that I could at any particular time which I think is more important than some of those things listed above. At the Olympics who is really the greater success; the person with a gold medal run in an average time for that competitor, or the person who came last and smashed their personal best by seconds? We may remember and hear of the person with the gold medal, but I think the one who came last will be able to look back on that day with the greater satisfaction of not only having made an Olympic final, but also of having done better that they had ever done before. It is the one who finished last who will be able to look back on that day as a truly golden moment in their life.
I don't have any expectations in, and of, life and as such I don't think that I have any feeling that there are things that I should have achieved, and didn't. I hope that a few people will remember me fondly when I do manage to drop off my perch, and I wish to make it clear that I have no intention of doing so for quite a while. After all there are a lot of people who could benefit from my opinion as well as my annoyance factor. It is kind of like, if I haven't done it by now maybe I was just never that interested in doing it. There are places in the world I would like to visit, but there are far too many places I haven't seen in my own country to worry too much about the rest of the world. There are times when I am driving in the countryside that I just wonder why people want to be anywhere else in the world. I love this country, and that is not in a jingoistic way, I just feel that it is the right place for me. I even love the weather. After all if you don't experience the bad then you can't really appreciate the good days.
I don't think of my life in terms of how long I have to live any more. My uncle died earlier this year at the age of 96, my aunt is 87 (siblings of my mother) but these are just numbers. Does it really matter that I have a limited life expectancy? No is the answer. I know that my life has not been a sparkling 'success', I am not famous, beautiful, wealthy and I haven't really achieved much in life, but I rather think that my life has been a success in a different way. I have done the best that I could at any particular time which I think is more important than some of those things listed above. At the Olympics who is really the greater success; the person with a gold medal run in an average time for that competitor, or the person who came last and smashed their personal best by seconds? We may remember and hear of the person with the gold medal, but I think the one who came last will be able to look back on that day with the greater satisfaction of not only having made an Olympic final, but also of having done better that they had ever done before. It is the one who finished last who will be able to look back on that day as a truly golden moment in their life.
I don't have any expectations in, and of, life and as such I don't think that I have any feeling that there are things that I should have achieved, and didn't. I hope that a few people will remember me fondly when I do manage to drop off my perch, and I wish to make it clear that I have no intention of doing so for quite a while. After all there are a lot of people who could benefit from my opinion as well as my annoyance factor. It is kind of like, if I haven't done it by now maybe I was just never that interested in doing it. There are places in the world I would like to visit, but there are far too many places I haven't seen in my own country to worry too much about the rest of the world. There are times when I am driving in the countryside that I just wonder why people want to be anywhere else in the world. I love this country, and that is not in a jingoistic way, I just feel that it is the right place for me. I even love the weather. After all if you don't experience the bad then you can't really appreciate the good days.
Sunday, 18 September 2011
18 September 2007
It was 4 years ago today that my cancer journey became a reality. It was 4 years ago that my left breast was removed. I don't normally remember dates that well, but it is the anniversary of my mother's birth and today she would have been 90 years old.
I wasn't really affected by the loss of my breast. After all I am not married or in a relationship, and as my mother had breast cancer when she was about 53 and had a breast removed so I knew what I would look like, it wasn't a shock. I did take a photo of my breast the morning that I went into the Princess Anne Hospital in Southampton, and for some reason I have kept it. It took a while to get used to it not being there - trying to wash it in the shower to find a flat chest on that side, and I sometimes feel as though there is an itch near where the nipple used to be. I guess it is a bit like having a limb amputated, you still get ghost sensations where it used to be.
I was supposed to be fine after the surgery and adjuvant chemotherapy. I was told a 90% chance of being alive in 10 years. If they had listened to the answers I gave to their questions they would have realised that my diagnosis was not Stage 2, but was Stage 4 all along. I suppose if they had realised that they probably would not have done the mastectomy at all, because when you are Stage 4 you are really not considered to be worth the effort or expense. I can live with the idea that I am not worth a great deal of expense, but I can't live with the feeling that I am not worth the effort. The effort I want is information and open mindedness on the side of the medical profession. I want to be able to access information and then make up my own mind. I am reading about Vitamin C at the moment, and one of the claims against it is that it shortened the life of Linus Pauling the double Nobel Prize winner who advocated its use. He died at the age of 94 for heavens sake. Freedom of Information does not include the medical profession. They seem to want to control and dictate the treatment options of their patients. After all I am not a laboratory mouse.
I wasn't really affected by the loss of my breast. After all I am not married or in a relationship, and as my mother had breast cancer when she was about 53 and had a breast removed so I knew what I would look like, it wasn't a shock. I did take a photo of my breast the morning that I went into the Princess Anne Hospital in Southampton, and for some reason I have kept it. It took a while to get used to it not being there - trying to wash it in the shower to find a flat chest on that side, and I sometimes feel as though there is an itch near where the nipple used to be. I guess it is a bit like having a limb amputated, you still get ghost sensations where it used to be.
I was supposed to be fine after the surgery and adjuvant chemotherapy. I was told a 90% chance of being alive in 10 years. If they had listened to the answers I gave to their questions they would have realised that my diagnosis was not Stage 2, but was Stage 4 all along. I suppose if they had realised that they probably would not have done the mastectomy at all, because when you are Stage 4 you are really not considered to be worth the effort or expense. I can live with the idea that I am not worth a great deal of expense, but I can't live with the feeling that I am not worth the effort. The effort I want is information and open mindedness on the side of the medical profession. I want to be able to access information and then make up my own mind. I am reading about Vitamin C at the moment, and one of the claims against it is that it shortened the life of Linus Pauling the double Nobel Prize winner who advocated its use. He died at the age of 94 for heavens sake. Freedom of Information does not include the medical profession. They seem to want to control and dictate the treatment options of their patients. After all I am not a laboratory mouse.
Saturday, 17 September 2011
Looking for something to do
I have been looking at the evening courses that are run for adults this academic year. There are a few Saturday / Sunday short courses that sound interesting, but I don't think that any of them will go very far.
I have been thinking about delving further into Alternative and Complementary Therapies. I use several Alternative therapies as part of my strategy to deal with my diagnosis and also with life in general. I have had depression since I was a teenager and being told that I have Stage IV breast cancer which they were only going to treat with palliative strategies was not the greatest of news. The feeling of anger and frustration that it had been allowed to get that far despite there being evidence that I might have cancer in 2002, five years before my diagnosis. I personally feel that the lack of support for those with and 'incurable' cancer is sadly absent. A lot has been reported about the low survival rates in the UK, and I think this is an important factor. Sorry we can't cure it, we aren't going to try, we will only give you palliative treatment to ease symptoms. Now go away and die quietly.
Where is the encouragement? Where are the coping strategies to deal with this?
I was lucky that I was having Cognitive Behavioural Therapy at the time to deal with the depression I had for so long, but that was disrupted for longish periods because of various things. I had started to have acupuncture in the four months between the Primary and Secondary Cancer diagnosis and have continued with it for nearly four years now. I have a treatment every two weeks which helps to keep my left hip moving, and also balances me. Justin also works on points on the front and back of my wrists which have really helped with my mood.
It has been a struggle to find some meaning to being alive with this diagnosis. I have always rather struggled to find a meaning in life and a place in the world and while CBT really helped it still didn't give me a clear route to follow. There were other pieces to be put in place.
One piece of the puzzle was Mindfullness, a form of meditation which is similar in its approach to CBT. The course that I am considering is to become a meditation teacher. I would like to be able to go into this more deeply and also to be able to hand on these strategies to others so they can better deal with things in their lives. Above all it will give me something to focus on rather than just drifting though; getting up, going to work, coming home, checking my internet groups, going to bed, getting up... I have been feeling more and more that I need to give something to the world. To contribute my own drip into the ocean of humanity and society.
What I would most like to do is to find a way of helping and supporting those in a similar position. I help administer a small forum in the UK and I belong to a big site that is based in the US but I don't know people locally who I could have a close connection to. Maybe this is because I don't have children and live alone, I don't have people to give to directly and my immediate support group is made up of Teddy Bears who have managed to dry out after the crying phase of this journey. I don't focus on the future, but I still want to grow and learn. I am not dead yet.
I have been thinking about delving further into Alternative and Complementary Therapies. I use several Alternative therapies as part of my strategy to deal with my diagnosis and also with life in general. I have had depression since I was a teenager and being told that I have Stage IV breast cancer which they were only going to treat with palliative strategies was not the greatest of news. The feeling of anger and frustration that it had been allowed to get that far despite there being evidence that I might have cancer in 2002, five years before my diagnosis. I personally feel that the lack of support for those with and 'incurable' cancer is sadly absent. A lot has been reported about the low survival rates in the UK, and I think this is an important factor. Sorry we can't cure it, we aren't going to try, we will only give you palliative treatment to ease symptoms. Now go away and die quietly.
Where is the encouragement? Where are the coping strategies to deal with this?
I was lucky that I was having Cognitive Behavioural Therapy at the time to deal with the depression I had for so long, but that was disrupted for longish periods because of various things. I had started to have acupuncture in the four months between the Primary and Secondary Cancer diagnosis and have continued with it for nearly four years now. I have a treatment every two weeks which helps to keep my left hip moving, and also balances me. Justin also works on points on the front and back of my wrists which have really helped with my mood.
It has been a struggle to find some meaning to being alive with this diagnosis. I have always rather struggled to find a meaning in life and a place in the world and while CBT really helped it still didn't give me a clear route to follow. There were other pieces to be put in place.
One piece of the puzzle was Mindfullness, a form of meditation which is similar in its approach to CBT. The course that I am considering is to become a meditation teacher. I would like to be able to go into this more deeply and also to be able to hand on these strategies to others so they can better deal with things in their lives. Above all it will give me something to focus on rather than just drifting though; getting up, going to work, coming home, checking my internet groups, going to bed, getting up... I have been feeling more and more that I need to give something to the world. To contribute my own drip into the ocean of humanity and society.
What I would most like to do is to find a way of helping and supporting those in a similar position. I help administer a small forum in the UK and I belong to a big site that is based in the US but I don't know people locally who I could have a close connection to. Maybe this is because I don't have children and live alone, I don't have people to give to directly and my immediate support group is made up of Teddy Bears who have managed to dry out after the crying phase of this journey. I don't focus on the future, but I still want to grow and learn. I am not dead yet.
Friday, 16 September 2011
In Limbo
The end of another working week and already I find myself looking forward to half term! That is one of the great things about working in admin in education, the holidays. The problem is that I am not sure whether to really plan anything.
Since cancer destroyed my right hip, resulting in a total hip replacement in January 2008, my left hip has been deteriorating. It has always been slightly deformed and now has osteoarthritis. Recent scans have shown that it is now just bone on bone articulation and the deterioration seems to be excellerating. The depressive side of me thinks - your cancer is incurable so they won't want to do anything as it will be a waste of money, and because I am not swollowing painkillers like Smarties they don't take me seriously when I tell them I have a problem. Trouble is that I have been right every time, and they have been wrong about my health. It seems, however, that I might have to go through the hoops of physio etc despite having had scans which show the state that it is in - sigh.
I want to be able to still do things and get out and about, but I can't really make any plans as I have no idea when / if they might actually do something. I think I am just feeling frustrated with several things that don't seem to be going well at the moment; but it is the end of the week and I am tired, which doesn't help.
It is not that I plan ahead that much, but it is nice to have something to look forward to, and nice to have the idea that there is a future out there somewhere. I love the saying 'yesterday is history, tomorrow is a mystery'. Over the last couple of years I have been working on letting go of the past, and not worrying about the future. What is the point in worrying about the future and wasting what is happening right now? I can not actually experience the future, until it becomes the present. I am not alive in the past or the future I am alive NOW and I need to make the most of it. That does not have to involve doing something extraordinary every day, and I don't have a Bucket List as I think that having such a list would make you focus on things that I haven't done, and in some cases things that I am not likely to do. Just living each day and doing the best that I can do each day is the only way to make the most of life.
There will always be days when I achieve more, feel more motivated and when life just seems to be fine. There will also be the opposite kinds of days, but then that IS life. Life is about going to work, doing the washing up, doing the shopping, washing, cleaning...but that doesn't make those days any less valued. Without the ordinary how do we recognise the extraordinary? I can't imagine living in a country where the weather is the same every day as I love the English weather. There are those wonderful days, like yesterday, when it is warm and sunny; the sky is a perfect cloudless blue that can stop you in your tracks. If it was like that every day who would notice the beautiful sky? Why do people complain about rain? This would not be a green and pleasant land without the rain, we would not have water to use without worrying about how much we are using without the rain, crops would not grow without the rain...you get my drift.
Since cancer destroyed my right hip, resulting in a total hip replacement in January 2008, my left hip has been deteriorating. It has always been slightly deformed and now has osteoarthritis. Recent scans have shown that it is now just bone on bone articulation and the deterioration seems to be excellerating. The depressive side of me thinks - your cancer is incurable so they won't want to do anything as it will be a waste of money, and because I am not swollowing painkillers like Smarties they don't take me seriously when I tell them I have a problem. Trouble is that I have been right every time, and they have been wrong about my health. It seems, however, that I might have to go through the hoops of physio etc despite having had scans which show the state that it is in - sigh.
I want to be able to still do things and get out and about, but I can't really make any plans as I have no idea when / if they might actually do something. I think I am just feeling frustrated with several things that don't seem to be going well at the moment; but it is the end of the week and I am tired, which doesn't help.
It is not that I plan ahead that much, but it is nice to have something to look forward to, and nice to have the idea that there is a future out there somewhere. I love the saying 'yesterday is history, tomorrow is a mystery'. Over the last couple of years I have been working on letting go of the past, and not worrying about the future. What is the point in worrying about the future and wasting what is happening right now? I can not actually experience the future, until it becomes the present. I am not alive in the past or the future I am alive NOW and I need to make the most of it. That does not have to involve doing something extraordinary every day, and I don't have a Bucket List as I think that having such a list would make you focus on things that I haven't done, and in some cases things that I am not likely to do. Just living each day and doing the best that I can do each day is the only way to make the most of life.
There will always be days when I achieve more, feel more motivated and when life just seems to be fine. There will also be the opposite kinds of days, but then that IS life. Life is about going to work, doing the washing up, doing the shopping, washing, cleaning...but that doesn't make those days any less valued. Without the ordinary how do we recognise the extraordinary? I can't imagine living in a country where the weather is the same every day as I love the English weather. There are those wonderful days, like yesterday, when it is warm and sunny; the sky is a perfect cloudless blue that can stop you in your tracks. If it was like that every day who would notice the beautiful sky? Why do people complain about rain? This would not be a green and pleasant land without the rain, we would not have water to use without worrying about how much we are using without the rain, crops would not grow without the rain...you get my drift.
Tuesday, 13 September 2011
Freedom in facing the fear
Fear is something that grips your life when you get the diagnosis of a chronic disease. We all like to think that we could handle it; that we could take it on the chin - stiff upper lip and all that. In truth noone knows how they will react until it happens to them. One thing is for sure; life will never be the same again.
There are stages of dealing with the news. Some of the reaction is the public face that we allow others to see, but the rest is the fear that grips your heart, mind and body in the wee small hours. Even when you think that you have it all under control you can lose your grip and fall backwards. This is partly because there is, or there was for me, no hope offered. No concept that you could actually still get better even if a cure is highly unlikely. It is possible to live with incurable cancer, even to make peace with it and allow it to co-exist with you no matter how reluctantly. The problem is finding that hope.
Hope for me came in the form of Jane Plant's "Your Life in Your Hands", a book that I came across when browsing in my local library. I devoured it and just felt such relief that there really were some things that I could do which would support my body and the treatment that I was having. Someone recently joked that due to the rising cost of electricity, gas & oil, and current market conditions, the Light at the End of the Tunnel has been turned off. Well if the light had been turned off this book gave me the switch to turn it back on again. Things as simple as giving up dairy and red meat and getting rid of my plastic food containers was a start. I looked at other things around me. I changed to eco friendly washing up liquid, natural toothpaste, used shower gel and shampoo which has no parabens. All of these things are within my control and I CAN make a difference. I don't have to sit and just take the tablets and treatments and stare at the wall and wait to die, I can actually Live with this - with a capital L.
There are stages of dealing with the news. Some of the reaction is the public face that we allow others to see, but the rest is the fear that grips your heart, mind and body in the wee small hours. Even when you think that you have it all under control you can lose your grip and fall backwards. This is partly because there is, or there was for me, no hope offered. No concept that you could actually still get better even if a cure is highly unlikely. It is possible to live with incurable cancer, even to make peace with it and allow it to co-exist with you no matter how reluctantly. The problem is finding that hope.
Hope for me came in the form of Jane Plant's "Your Life in Your Hands", a book that I came across when browsing in my local library. I devoured it and just felt such relief that there really were some things that I could do which would support my body and the treatment that I was having. Someone recently joked that due to the rising cost of electricity, gas & oil, and current market conditions, the Light at the End of the Tunnel has been turned off. Well if the light had been turned off this book gave me the switch to turn it back on again. Things as simple as giving up dairy and red meat and getting rid of my plastic food containers was a start. I looked at other things around me. I changed to eco friendly washing up liquid, natural toothpaste, used shower gel and shampoo which has no parabens. All of these things are within my control and I CAN make a difference. I don't have to sit and just take the tablets and treatments and stare at the wall and wait to die, I can actually Live with this - with a capital L.
Monday, 12 September 2011
How can I heal?
This was the question that I was left with. Surely there is hope?
One of the early books that I read in an effort to find a way of dealing with my diagnosis was Bernie Siegal's "Love, Medicine and Miracles". Quite early on in the book he wrote something that really stuck a chord with me. Basically he was saying that with cancer it is about the only illness where you are given no hope. If I had a heart attack there would be advice about diet, exercise and how to do this. If I had a stroke there would be rehab to help things improve. With incurable cancer? NOTHING. No advice, encouragement, no guidelines of how you can help yourself. Excuse me? Why not?
Why is cancer a disease that, once it spreads, is just considered incurable and nothing can be done except refer you to palliative care? The 'experts' like to claim that a large proportion of cancer is caused by diet and life style choices, but if this is the case then why can't diet and life style choices make a big difference in countering and reversing cancer?
Bernie Siegal is a, now retired, surgeon who started up ECAP groups of Exceptional Cancer Patients. These are the patients who don't let their oncologists dictate their treatment, who go out and find a way for themself, who are 'difficult' in that they just don't blindly follow the course of treatment that they are given. They empower themselves.
Hilary was my best friend; someone who shared a similar background, who also had depression and was looking for a path in life. We met 10 years ago doing an Access course to enable us to go to University. I went to Bournemouth Uni and got a First Class degree reading Archaeology. Hilary went to Bath Uni to study Pharmacy. Hilary was very anxious and lacked confidence and had to re-do her first year. At the end of that year, the end of my second year, she contacted me to say that she was having tests. At first for stomach ulcers, but then they found that she had stomach cancer with liver secondaries. I went up to support her and took her back into the Royal United Hospital to have further tests and they had put a leaflet about palliative care on her bed. No one to talk to, just a leaflet 'saying' there way no hope. Hilary's brother had died of bowel cancer a few years before and this whole experience crushed her confidence. I went to stay with her while she had some palliative chemo and ended up pretty much staying to the end. She had a bad reaction to this chemo and it nearly killed her, and she never really recovered from this, or had a good quality of life. Was this inevitable? Was this the only outcome possible? Personally I think not, and I wish I had encouraged her to come to terms with her diagnosis and find a way of still enjoying life. Other friends tried to get information to her about alternative treatments, but she could never really attempt to make use of this information; and being a Pharmacy student she was convinced that only conventional Western medicine had the answers.
I really knew that I was unwell 10 years ago. I had to have a hysterectomy and tests showed I might have cancer. The Registrar just casually said this as she walked out the door to speak to the consultant before the operation. I went back to the chemistry class on the Access course, and Hilary noticed I looked a bit blitzed and asked me what was wrong. 'The doctor says I might have cancer'. After the op I was told that there was no cancer in that area and everything was fine. Everyone said how much better I would feel, but after an initial boost I didn't feel full of energy, I just continued to feel worse. I told the gynae and my GP that my mother had breast cancer when she was in her early 50's. It turns out that the cancer markers that indicated that I might have cancer were also breast cancer markers. The attitude was not that we will investigate this, but that I was fat and depressed, and technically too 'young' to have breast cancer and I should go away. I tried to argue how bad my back was, now bad my right hip was getting. Just go away. Something was only done when I finally realised that I had a large lump in my left breast.
For many years I had begged God to let me die, especially after Hilary died. She had such plans for the future and I had none. I still don't. Maybe that was one influence, my desire to be dead. But then why couldn't I also have an influence in my survival? Seigal's book is basically talking of the power of the individual to heal. It is not just Western medicine that heals, but empowerment of the individual can really make a difference. The empowerment has to be of the whole person, and not just the tissue around the tumour; the treatment has to be of the whole body. It has to be Holistic, integrating all the treatments that you feel are right for you. Western medicine, Traditional Chinese Herbal Medicine, acupuncture, reflexology. meditation, supplements, nutrition and exercise. All of these are part of my chosen path as they deal with the whole of my body and not just my disease.
One of the early books that I read in an effort to find a way of dealing with my diagnosis was Bernie Siegal's "Love, Medicine and Miracles". Quite early on in the book he wrote something that really stuck a chord with me. Basically he was saying that with cancer it is about the only illness where you are given no hope. If I had a heart attack there would be advice about diet, exercise and how to do this. If I had a stroke there would be rehab to help things improve. With incurable cancer? NOTHING. No advice, encouragement, no guidelines of how you can help yourself. Excuse me? Why not?
Why is cancer a disease that, once it spreads, is just considered incurable and nothing can be done except refer you to palliative care? The 'experts' like to claim that a large proportion of cancer is caused by diet and life style choices, but if this is the case then why can't diet and life style choices make a big difference in countering and reversing cancer?
Bernie Siegal is a, now retired, surgeon who started up ECAP groups of Exceptional Cancer Patients. These are the patients who don't let their oncologists dictate their treatment, who go out and find a way for themself, who are 'difficult' in that they just don't blindly follow the course of treatment that they are given. They empower themselves.
Hilary was my best friend; someone who shared a similar background, who also had depression and was looking for a path in life. We met 10 years ago doing an Access course to enable us to go to University. I went to Bournemouth Uni and got a First Class degree reading Archaeology. Hilary went to Bath Uni to study Pharmacy. Hilary was very anxious and lacked confidence and had to re-do her first year. At the end of that year, the end of my second year, she contacted me to say that she was having tests. At first for stomach ulcers, but then they found that she had stomach cancer with liver secondaries. I went up to support her and took her back into the Royal United Hospital to have further tests and they had put a leaflet about palliative care on her bed. No one to talk to, just a leaflet 'saying' there way no hope. Hilary's brother had died of bowel cancer a few years before and this whole experience crushed her confidence. I went to stay with her while she had some palliative chemo and ended up pretty much staying to the end. She had a bad reaction to this chemo and it nearly killed her, and she never really recovered from this, or had a good quality of life. Was this inevitable? Was this the only outcome possible? Personally I think not, and I wish I had encouraged her to come to terms with her diagnosis and find a way of still enjoying life. Other friends tried to get information to her about alternative treatments, but she could never really attempt to make use of this information; and being a Pharmacy student she was convinced that only conventional Western medicine had the answers.
I really knew that I was unwell 10 years ago. I had to have a hysterectomy and tests showed I might have cancer. The Registrar just casually said this as she walked out the door to speak to the consultant before the operation. I went back to the chemistry class on the Access course, and Hilary noticed I looked a bit blitzed and asked me what was wrong. 'The doctor says I might have cancer'. After the op I was told that there was no cancer in that area and everything was fine. Everyone said how much better I would feel, but after an initial boost I didn't feel full of energy, I just continued to feel worse. I told the gynae and my GP that my mother had breast cancer when she was in her early 50's. It turns out that the cancer markers that indicated that I might have cancer were also breast cancer markers. The attitude was not that we will investigate this, but that I was fat and depressed, and technically too 'young' to have breast cancer and I should go away. I tried to argue how bad my back was, now bad my right hip was getting. Just go away. Something was only done when I finally realised that I had a large lump in my left breast.
For many years I had begged God to let me die, especially after Hilary died. She had such plans for the future and I had none. I still don't. Maybe that was one influence, my desire to be dead. But then why couldn't I also have an influence in my survival? Seigal's book is basically talking of the power of the individual to heal. It is not just Western medicine that heals, but empowerment of the individual can really make a difference. The empowerment has to be of the whole person, and not just the tissue around the tumour; the treatment has to be of the whole body. It has to be Holistic, integrating all the treatments that you feel are right for you. Western medicine, Traditional Chinese Herbal Medicine, acupuncture, reflexology. meditation, supplements, nutrition and exercise. All of these are part of my chosen path as they deal with the whole of my body and not just my disease.
Sunday, 11 September 2011
You tell me I'm going to die, and you'll only offer me palliative care!
One of the biggest challenges has been in realising and coming to terms with the fact that I am not going to die as soon as I thought I would. That I can still work and have a life, within some limitations. However they are only really limitations if you allow them limit your existence. I can't walk very well, and I'm not able to do many things that I once took completely for granted (who moved the floor so far away?) but I can manage.
There is a long list of things that I can't do, but they are also challenges to find a way around them. The garden has got to the point where it is a total jungle, but I have recently found out that a neighbour is a professional gardener so I need to get around to contacting him about completely clearing my front garden so I just have a lawn out there. At the moment there are trees growing in the lawn!
When you are told that you have six months, possibly a year to live it can make your life crash into a wall and scrunch up. Everything from the past and the future is now squashed into this time frame and it is really had to know what to do, and where to start sorting things out.
In all honesty I can't say that I was very upset about the thought of dying. I was upset about the thought of what a waste my life has been, and the worry that I was going to become a burden to others who wouldn't want to take on that burden; and if they didn't what would happen to me? All very selfish, I know, but in many ways I have never thought that I really fitted in anywhere; that I have never belonged.
The impression I was left with by my oncologist at the time was that I was going to die of this, there was nothing that they were going to do to even try to make me better and that anything they did do would be purely paliative and to ease symptoms. What? You are not going to try anything? You are expecting me just to die quietly in some corner somewhere, and without causing the NHS too much expense in time or money? I know that I am worthless and useless already, but what a confirmation that was that I was just...nothing. I was put on hormone therapy and told I wouldn't be given chemotherapy because it was "not appropriate at this time". So there I am, on Tamoxifen (daily tablet) and zoledronic acid (Zometa) by I.V. every four weeks. The latter is a bisphosphonate to strengthen my bones, which is where the cancer has spread to. Maybe this will work, for now.
It was the thought of not even being given the chance to find something that would really work for me; that could give me a quantity and quality of life so that I could make some meaning of it all. This was the one thing that not only upset me a great deal, but which spurred me on to find a way to help myself.
There is a long list of things that I can't do, but they are also challenges to find a way around them. The garden has got to the point where it is a total jungle, but I have recently found out that a neighbour is a professional gardener so I need to get around to contacting him about completely clearing my front garden so I just have a lawn out there. At the moment there are trees growing in the lawn!
When you are told that you have six months, possibly a year to live it can make your life crash into a wall and scrunch up. Everything from the past and the future is now squashed into this time frame and it is really had to know what to do, and where to start sorting things out.
In all honesty I can't say that I was very upset about the thought of dying. I was upset about the thought of what a waste my life has been, and the worry that I was going to become a burden to others who wouldn't want to take on that burden; and if they didn't what would happen to me? All very selfish, I know, but in many ways I have never thought that I really fitted in anywhere; that I have never belonged.
The impression I was left with by my oncologist at the time was that I was going to die of this, there was nothing that they were going to do to even try to make me better and that anything they did do would be purely paliative and to ease symptoms. What? You are not going to try anything? You are expecting me just to die quietly in some corner somewhere, and without causing the NHS too much expense in time or money? I know that I am worthless and useless already, but what a confirmation that was that I was just...nothing. I was put on hormone therapy and told I wouldn't be given chemotherapy because it was "not appropriate at this time". So there I am, on Tamoxifen (daily tablet) and zoledronic acid (Zometa) by I.V. every four weeks. The latter is a bisphosphonate to strengthen my bones, which is where the cancer has spread to. Maybe this will work, for now.
It was the thought of not even being given the chance to find something that would really work for me; that could give me a quantity and quality of life so that I could make some meaning of it all. This was the one thing that not only upset me a great deal, but which spurred me on to find a way to help myself.
It is more blessed to give than receive
One thing that I have been trying to do is to give a gift each day. This has been part of my strategy to break out of the grief, confusion and stress of being told I have incurable cancer. I thrashed around for a long time trying to find a point in life, but in the end I came to the conclusion that maybe I needed to try to give something back to show that I could still contribute to society in many ways.
That said, my gift today was to myself a lovely mini rose plant to keep in my 'office' at home. I managed to nurse it home without doing too much damage (did lose a couple of leaves on the way) with it hanging on the handle of my trusty shopping trolley. Having an office at home sounds so grand, but it is full of 'stuff', which is a grand title for junk.
Let's get back to the giving thing...I make cards which I sell at work and then give the money to which ever charity we are collecting for at the time; Children In Need, a school in Rwanda etc. At the end of the summer term (I work in a college) I had some money in the pot. I finally got round to spending it as part of the 29Gifts Giving Challenge that I have taken up after reading Cami Walker's 29 Gifts. http://www.29gifts.org/ I decided to do this as a structured way of giving and also thinking about what I can contribute to other people's lives. The idea behind this is that it doesn't have to be something big, it could just be a smile, but it has to be something that you are consciously doing; and that by giving out we are also receiving.
I have a new colleague at work who started on Monday. At work we have a 'milk fund' where a colleague buys milk, tea, coffee, biscuits etc in return for £1 a week from every one who uses this facility. Mandy will be joining so one of my gifts was to pay for her first week. Also she was mentioning how she liked to brew tea in a pot and I gave her a one-person teapot and cup set that I was going to give to a charity shop as I don't use it. I like the idea of it going to someone who will care for it properly, and Mandy was delighted. I gave something, received something and also managed to do something in tune with September's theme of 'Mothering our Mother Earth' by recycling and reusing.
I have found that my concentrating on the small and simple things in life that I have been able to regain control, of myself and my life. Learning, through Mindfullness, to return to the sensation of the breath going in and out of my body, and the reassurance that right this moment I am safe and ok, has been a big leap forward for me. It can stop panic and anxiety in almost an instance. So, with giving in a conscious and structured way I am reminding myself of what I can do for others, and the contribution that I can still make.
That said, my gift today was to myself a lovely mini rose plant to keep in my 'office' at home. I managed to nurse it home without doing too much damage (did lose a couple of leaves on the way) with it hanging on the handle of my trusty shopping trolley. Having an office at home sounds so grand, but it is full of 'stuff', which is a grand title for junk.
Let's get back to the giving thing...I make cards which I sell at work and then give the money to which ever charity we are collecting for at the time; Children In Need, a school in Rwanda etc. At the end of the summer term (I work in a college) I had some money in the pot. I finally got round to spending it as part of the 29Gifts Giving Challenge that I have taken up after reading Cami Walker's 29 Gifts. http://www.29gifts.org/ I decided to do this as a structured way of giving and also thinking about what I can contribute to other people's lives. The idea behind this is that it doesn't have to be something big, it could just be a smile, but it has to be something that you are consciously doing; and that by giving out we are also receiving.
I have a new colleague at work who started on Monday. At work we have a 'milk fund' where a colleague buys milk, tea, coffee, biscuits etc in return for £1 a week from every one who uses this facility. Mandy will be joining so one of my gifts was to pay for her first week. Also she was mentioning how she liked to brew tea in a pot and I gave her a one-person teapot and cup set that I was going to give to a charity shop as I don't use it. I like the idea of it going to someone who will care for it properly, and Mandy was delighted. I gave something, received something and also managed to do something in tune with September's theme of 'Mothering our Mother Earth' by recycling and reusing.
I have found that my concentrating on the small and simple things in life that I have been able to regain control, of myself and my life. Learning, through Mindfullness, to return to the sensation of the breath going in and out of my body, and the reassurance that right this moment I am safe and ok, has been a big leap forward for me. It can stop panic and anxiety in almost an instance. So, with giving in a conscious and structured way I am reminding myself of what I can do for others, and the contribution that I can still make.
Saturday, 10 September 2011
What have we got to lose?
I came across a wonderful quote from Steve Jobs (the Apple man) who has pancreatic cancer. I mention this so that others will see where this quote comes from more easily."Remembering that you are going to die is the best way to avoid the trap of thinking you have something to lose"
In my situation I have nothing to lose. Every day is a gift, and I have everything to gain from each day. I love the Mindfullness of this quote, this really is living in this very moment and is a wonderful reminder to make the most of what we do have. We DO have this moment and there is no point in wasting it in the self pity of having incurable cancer. After all if we don't make the most of today we are wasting what life we do have.
That said there is still a place for having self pity but not for too much, it takes up too much time, and potentially time is the one thing we know we don't have. But then this leads to the question - do any of us actually have anything to lose? There is no guarentee of a future even though we may have planned for it. The husband of someone who used to work at the same place as me was killed in the Clapham Junction crash. His plans for the future were unfulfilled and were 'lost'. There just are no guarentees in life.
This is a difficult concept to get people to understand. Life is hectic and needs to be planned - doing things, going places, thing that must be achieved. STOP! What about today? Sod next week - what about today?
In my situation I have nothing to lose. Every day is a gift, and I have everything to gain from each day. I love the Mindfullness of this quote, this really is living in this very moment and is a wonderful reminder to make the most of what we do have. We DO have this moment and there is no point in wasting it in the self pity of having incurable cancer. After all if we don't make the most of today we are wasting what life we do have.
That said there is still a place for having self pity but not for too much, it takes up too much time, and potentially time is the one thing we know we don't have. But then this leads to the question - do any of us actually have anything to lose? There is no guarentee of a future even though we may have planned for it. The husband of someone who used to work at the same place as me was killed in the Clapham Junction crash. His plans for the future were unfulfilled and were 'lost'. There just are no guarentees in life.
This is a difficult concept to get people to understand. Life is hectic and needs to be planned - doing things, going places, thing that must be achieved. STOP! What about today? Sod next week - what about today?
Wednesday, 7 September 2011
Mindfullness
One of the strategies that I have used to help me deal with life is meditation, and in particular Mindfulness. The only support that I have had from my hospital in the 44 months since I was diagnosed with metastatic breast cancer was to be part of a trial using Mindfullness Based Stress Reduction (MBSR) techniques to cope with living with an incurable disease. So starting in January I did an eight week course at a hotel near the hospital which actually taught me to put into practice that which I had been trying to do simply from reading the theory. I would have to say that this has been an enormous help to me, to be able to bring my attention back to this actual moment by focusing on my breathing. MBSR has the ability to stop you in your thought processes and bring yourself back to a place of safety.
I can use this technique not only in stressful moments, but as an aid to dealing with pain and insomnia. I don't have too much of the latter, but sometimes it really can help you to relax and release. I have an MP3 player and have found some lovely music and guided meditations on Amazon for under £1, which is amazing. I love the feature that you can listen to a sample before you buy, which is especially important with the guided meditations as you need to be guided by a voice that you can respond to in a positive way.
I use meditation when I am having a treatment. I listen to music, or to a guided colour imagery, and 'see' the meds going into my body and focusing on the bones and the cancer. By accepting this into my body it is empowering the body and the medication to do what they need to do. I can take myself to favourite places and I can allow myself to be there on a perfect day when it is warm with a cooling breeze in a sunny day with puffy white clouds in a beautiful sky.
Allowing peace and contentment into my life, and being at peace with the cancer, has been such a positive thing. This is going to stay with me for the rest of my life, so why not befriend it. In so many ways having incurable cancer has been a very positive thing for me. I know that sounds really strange, but that is just the way it has been. I have a meaning to my life, and that meaning is to experience each day as it comes and to focus on that.
I can use this technique not only in stressful moments, but as an aid to dealing with pain and insomnia. I don't have too much of the latter, but sometimes it really can help you to relax and release. I have an MP3 player and have found some lovely music and guided meditations on Amazon for under £1, which is amazing. I love the feature that you can listen to a sample before you buy, which is especially important with the guided meditations as you need to be guided by a voice that you can respond to in a positive way.
I use meditation when I am having a treatment. I listen to music, or to a guided colour imagery, and 'see' the meds going into my body and focusing on the bones and the cancer. By accepting this into my body it is empowering the body and the medication to do what they need to do. I can take myself to favourite places and I can allow myself to be there on a perfect day when it is warm with a cooling breeze in a sunny day with puffy white clouds in a beautiful sky.
Allowing peace and contentment into my life, and being at peace with the cancer, has been such a positive thing. This is going to stay with me for the rest of my life, so why not befriend it. In so many ways having incurable cancer has been a very positive thing for me. I know that sounds really strange, but that is just the way it has been. I have a meaning to my life, and that meaning is to experience each day as it comes and to focus on that.
I'm not going back...
...to read the previous posts. They are from a different part of my journey that was filled with the pain of not having a clear plan of dealing with a diagnosis of incurable cancer. I think that this is the biggest problem of having such a diagnosis. It is like being pushed over and not being able to put your hands down to stop you crashing face first into oblivion.
It is a feeling of intense loneliness, of being cut free from the future and the past and drifting in space trying to find something to hang on to. That no curative treatment is offered, only palliative, made me feel as though I should just go into the corner and die quietly and not waste the time of the oncologists, or waste NHS resources. What can you hold on to in such a position? Where do you go from there?
The destination took me quite some time to locate, and I'm still not sure that I am there. I have found a place of peace and contentment with myself and my life. We are all alive in this very moment - yesterday is history and tomorrow is a mystery. I have wasted a lot of my life and I am not going to waste any more of it by being dragged back by the past and fretting about a future that has not yet arrived for any of us. It is all about the here and now, and I am ok at the moment; I can manage.
Sunday, 4 September 2011
How things have changed!
I have changed the name of the blog as well as everything else about it; but I thought I would leave the posts so I could see where I came from to get here.
I think that more things have changed in the last year than in the previous three years since my diagnosis of breast cancer. I have moved on from being that angry and lonely person, though I am still alone and angry at times.
I made peace with my cancer. I accept that it is a part of me, that it will always be there and that we just have to get on with life together. It was doing a Mindfullness Based Stress Reduction course that really made the difference. I had been trying to use the Mindfullness principles before starting the course in January 2011, but actually being shown how to put them into practice has made all the difference. Right here, right now the cancer and I are ok; we are safe and really have nothing much to worry about.
Having access to the internet has also made a huge difference as it has put me in touch with others in the same position to me, so I no longer feel isolated. I will continue this later as I am going out for lunch with my niece Vicky who is back from her travels and now runs her own hairdressing business...speak soon
I think that more things have changed in the last year than in the previous three years since my diagnosis of breast cancer. I have moved on from being that angry and lonely person, though I am still alone and angry at times.
I made peace with my cancer. I accept that it is a part of me, that it will always be there and that we just have to get on with life together. It was doing a Mindfullness Based Stress Reduction course that really made the difference. I had been trying to use the Mindfullness principles before starting the course in January 2011, but actually being shown how to put them into practice has made all the difference. Right here, right now the cancer and I are ok; we are safe and really have nothing much to worry about.
Having access to the internet has also made a huge difference as it has put me in touch with others in the same position to me, so I no longer feel isolated. I will continue this later as I am going out for lunch with my niece Vicky who is back from her travels and now runs her own hairdressing business...speak soon
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