I have started a petition calling for a fair share of the research funding to go to research into metastatic breast cancer. I intend to send it to Cancer Research UK who once told me that they devoted about 1% of their £400m annual research budget to research into any kind of metastatic cancer and other organisations in the UK who fund breast cancer research. As 30% of those who are diagnosed with breast cancer will progress to having metastatic, Stage IV breast cancer the research programme should have 30% devoted to metastatic disease.
http://www.ipetitions.com/petition/fair-research-funding-for-metastatic-breast-cancer/
Please sign it and pass it on; or pass it on even if you do not feel that you can sign it.
Finding treatments to deal with metastatic breast cancer will help not only those of us with this stage of the disease, but also those with early stage breast cancer because it will help to relieve the stress and fear of a progression of this disease. It may also allow them to embrace and accept those of us with MBC which many of us feel is not the case at the moment. We are their worst nightmare.
I can understand the reluctance of the Pink Movement to acknowledge us. We are not a part of the success story which is the image of breast cancer; not a part of the survivorship which is so celebrated as a corner stone of breast cancer. There are so many people who think that it is a curable disease but many early stage patients know that there is a Stage IV which is incurable and is something to be dreaded and feared which in turn leads to our sense of isolation. We are not failures. We are simply living with breast cancer every day for the rest of our lives. If you sign the petition it may help us to live longer.
Thursday, 30 August 2012
Wednesday, 29 August 2012
My ambition is to be Pink
I know that it sounds a bit strange to want to be pink, even if it is my favourite colour, but I think that it is actually the ultimate ambition of all of us who have metastatic breast cancer to be completely accepted and welcomed as part of the Breast Cancer Community; as represented by the colour Pink.
The problem of being Pink, for me, is that it has come to represent survivorship and, through Pink Washing, the corporate greed of many companies and organisations who see the colour and its associations as a way of making profit whilst enhancing their image. After all what are the risks for a big company to produce some pink products to sell in return for a small donation for each item sold? Worst still there are companies which only tell the buyer in the very smallest of writing that there is a limit to the amount they will donate, but not to the number of items they will sell. I make cards which I sell for £1. I could pledge to give £100 to a charity and then sell 500 cards and keep the other £400 profit while advertising that I am selling them for charity. Hmmm.
I want to be pink because I would like to feel accepted into a community which perports to represent all of those with breast cancer ... but it seems to be as long as you don't embarrass them by having metastatic BC which means you are unlikely to be a 'survivor', or worse still you are a male of the species with breast cancer. If we think that as metavivors we are shunned by the Girls in Pink then what about the Boys in Blue? You try finding support, information and acceptance into the community when you belong to the 'wrong' gender. In part this is a problem that is not helped by men who don't want to 'come out' about their cancer; and it seems to also be part of the problem with getting more done for prostate cancer - all a bit embarrassing, don't you know, and real men don't talk about such things.
It may just be the impression that we get from the main BC community, and it may be only a minority who don't feel able to accept us but they are the minority that we seem to encounter when we are told not to say we have mets at a breast cancer 'support' group because we must not upset or scare the majority. That is the minority that would not speak to someone who went to just such a 'support' group and after saying she had mets no one would talk to her. She didn't go again - shock! Possibly we are being over-sensitive because we really don't want to pierce their pink bubble of surviving and life after cancer. We genuinely do want them to be survivors, we don't want them to join us, but we do want them to accept us and by accepting us to also support us. Mets are not catching. They may even see that we have a relatively 'normal' life. Four and a half years after my mets diagnosis I still work for a living, I can still contribute to society, I am still a living person. So while I live I still have ambitions, and one of them is to be Pink.
The problem of being Pink, for me, is that it has come to represent survivorship and, through Pink Washing, the corporate greed of many companies and organisations who see the colour and its associations as a way of making profit whilst enhancing their image. After all what are the risks for a big company to produce some pink products to sell in return for a small donation for each item sold? Worst still there are companies which only tell the buyer in the very smallest of writing that there is a limit to the amount they will donate, but not to the number of items they will sell. I make cards which I sell for £1. I could pledge to give £100 to a charity and then sell 500 cards and keep the other £400 profit while advertising that I am selling them for charity. Hmmm.
I want to be pink because I would like to feel accepted into a community which perports to represent all of those with breast cancer ... but it seems to be as long as you don't embarrass them by having metastatic BC which means you are unlikely to be a 'survivor', or worse still you are a male of the species with breast cancer. If we think that as metavivors we are shunned by the Girls in Pink then what about the Boys in Blue? You try finding support, information and acceptance into the community when you belong to the 'wrong' gender. In part this is a problem that is not helped by men who don't want to 'come out' about their cancer; and it seems to also be part of the problem with getting more done for prostate cancer - all a bit embarrassing, don't you know, and real men don't talk about such things.
It may just be the impression that we get from the main BC community, and it may be only a minority who don't feel able to accept us but they are the minority that we seem to encounter when we are told not to say we have mets at a breast cancer 'support' group because we must not upset or scare the majority. That is the minority that would not speak to someone who went to just such a 'support' group and after saying she had mets no one would talk to her. She didn't go again - shock! Possibly we are being over-sensitive because we really don't want to pierce their pink bubble of surviving and life after cancer. We genuinely do want them to be survivors, we don't want them to join us, but we do want them to accept us and by accepting us to also support us. Mets are not catching. They may even see that we have a relatively 'normal' life. Four and a half years after my mets diagnosis I still work for a living, I can still contribute to society, I am still a living person. So while I live I still have ambitions, and one of them is to be Pink.
Thursday, 23 August 2012
So what is happening on Metastatic Breast Cancer Awareness Day 2012?
I have been trying to find out what is happening for Metastatic Breast Cancer Awareness Day on 13 October 2012 in the United Kingdom. The answer seems to be a big fat nothing. The charity Breast Cancer Care did organise something for last year, but it all seems to have been forgotten, as though we have all gone away - i.e. died. The small amount of effort that they did put in seems to have fizzled out and it is back to service as normal for Pinktober. Pink ribbons and survivors.
Is anyone actually interested in our existence, except as a slogan for raising money for breast cancer charities and early-stage awareness? 'Over 11,000 people died of breast cancer in the UK last year' so give us your money so we can educated people about the symptoms of breast cancer and fund research into preventing the spread of breast cancer. Just one problem with that - WHAT ABOUT THOSE OF US WHO ARE ALREADY STAGE IV? Sorry to shout but for those 11,000 people finding a way to stop mets happening was just not much use; it has already happened and now they are dead. What we need is an effective treatment or cure for the cancer when it has spread. This is the type of cancer which kills, but the focus is all on the survivors who, on the whole, just don't want to acknowledge our existence because we are a reminder of what their future may be ... especially as there is no effective treatment or a cure.
So what will I be doing on 13 October? I hope to be at the Macmillan Cancer Voices conference near London, and one of the sessions I hope to do is about advocacy. The other is about campaigning for changes to my local NHS. However, I have tried writing to the Daily Telegraph and the Daily Mail about MBCA Day but I have not had a reply, but I didn't really think they would take any notice of me. I may try my more local papers; the good old Lymington Times, or the Southampton Echo to see if they are doing anything to support this day. The real shame is that one thing that I have found is that it is very difficult to get people with MBC to be willing to support others with the disease. Maybe it is just because I really don't have much of a life so I am interested in helping others deal with all of this and trying to get information, advice and guidance to others. So maybe it is me who ought to give up and accept that a lot of other folks just aren't interested?
Is anyone actually interested in our existence, except as a slogan for raising money for breast cancer charities and early-stage awareness? 'Over 11,000 people died of breast cancer in the UK last year' so give us your money so we can educated people about the symptoms of breast cancer and fund research into preventing the spread of breast cancer. Just one problem with that - WHAT ABOUT THOSE OF US WHO ARE ALREADY STAGE IV? Sorry to shout but for those 11,000 people finding a way to stop mets happening was just not much use; it has already happened and now they are dead. What we need is an effective treatment or cure for the cancer when it has spread. This is the type of cancer which kills, but the focus is all on the survivors who, on the whole, just don't want to acknowledge our existence because we are a reminder of what their future may be ... especially as there is no effective treatment or a cure.
So what will I be doing on 13 October? I hope to be at the Macmillan Cancer Voices conference near London, and one of the sessions I hope to do is about advocacy. The other is about campaigning for changes to my local NHS. However, I have tried writing to the Daily Telegraph and the Daily Mail about MBCA Day but I have not had a reply, but I didn't really think they would take any notice of me. I may try my more local papers; the good old Lymington Times, or the Southampton Echo to see if they are doing anything to support this day. The real shame is that one thing that I have found is that it is very difficult to get people with MBC to be willing to support others with the disease. Maybe it is just because I really don't have much of a life so I am interested in helping others deal with all of this and trying to get information, advice and guidance to others. So maybe it is me who ought to give up and accept that a lot of other folks just aren't interested?
Wednesday, 22 August 2012
Treatment day.
Treatment day today so it was off to Oakhaven Hospice to have my i.v. infusion of Zoledronic Acid )aka Zometa). I have been having this every four weeks since February 2008, except for a few months at the beginning of this year because of my hip replacement surgery. In many ways my life revolves around these treatments, and it was the reason I had to get home at the beginning of the week, blood test on Tuesday, treatment on Wednesday. The infusion only takes about 15 minutes to go through, but in total I was there about 45 minutes to give time for the canula to be put in, saline put through to flush my veins before and after the medication is put through, and of course removal of the canula.
This is the third treatment that I have had at Oakhaven and it is soooo much nicer than having to go in to Southampton General Hospital and see the oncologist and then wait and hope that my treatment came through somewhere near on time a couple of hours after seeing him. At the moment I only need to see the oncologist every three months and have the treatments done locally to me.
Some people think that a Hospice is to be avoided at all costs because they are all about the very end of life, however this is only a part of their function within the community that they serve; but a Hospice is about so much more. I have used their facilities before, and my first contact was when I was going through a very difficult time and I had reached the point of considering suicide because I thought there was absolutely no hope that I could have a life worth living.
A metastatic cancer diagnosis is not an automatic and immediate death sentence, but I was given no encouragement to be able to think any other way. I think it was the help from the counsellor at Oakhaven and sheer cussed detemination, combined with finding Jane Plant's book ' Your Life In Your Hands' and Bernie Seigal's 'Love, Medicine and Miracles' that finally allowed me to see that there was a way through the 'fog of war' and into the fresh light of a new and another day. It was a long and painful journey and the Hospice really supported me and helped me deal with my situation because that is why they are there. We do not die until the second we die and the brain stops functioning and they know that. They are about making the most of what an individual has so that we can live life as full as possible for as long as possible. That is one reason I like to go there for my treatments, the Hospice has more life to it than the Hospital.
This is the third treatment that I have had at Oakhaven and it is soooo much nicer than having to go in to Southampton General Hospital and see the oncologist and then wait and hope that my treatment came through somewhere near on time a couple of hours after seeing him. At the moment I only need to see the oncologist every three months and have the treatments done locally to me.
Some people think that a Hospice is to be avoided at all costs because they are all about the very end of life, however this is only a part of their function within the community that they serve; but a Hospice is about so much more. I have used their facilities before, and my first contact was when I was going through a very difficult time and I had reached the point of considering suicide because I thought there was absolutely no hope that I could have a life worth living.
A metastatic cancer diagnosis is not an automatic and immediate death sentence, but I was given no encouragement to be able to think any other way. I think it was the help from the counsellor at Oakhaven and sheer cussed detemination, combined with finding Jane Plant's book ' Your Life In Your Hands' and Bernie Seigal's 'Love, Medicine and Miracles' that finally allowed me to see that there was a way through the 'fog of war' and into the fresh light of a new and another day. It was a long and painful journey and the Hospice really supported me and helped me deal with my situation because that is why they are there. We do not die until the second we die and the brain stops functioning and they know that. They are about making the most of what an individual has so that we can live life as full as possible for as long as possible. That is one reason I like to go there for my treatments, the Hospice has more life to it than the Hospital.
Saturday, 18 August 2012
Visiting the past
The Tudor period is one of the most interesting and evocative periods. It was a time when women ruled the country through the turbulence of the Reformation, Mary's attempt to return the country to the Roman Catholic religion, and then the remarkable age of Elizabeth I. An age when England changed more that it had in the previous 500 years, and an age which must have challenged all those who lived through it and the religious upheaval. To remain catholic? Become Protestant? A Puritan? Extremes of views that Elizabeth tried to pick her way through to maintain peace. Two remarkable women with the same name during the same age.
Finding a path to follow for yourself is never easy, and for me it has been a constant challenge to be able to find a direction to go in. The last few years have forced me to really focus on the way I want to go. It is not something that anyone would ask for, but it can also be very instructive to have to focus on the here and how; to have to make decisions; to have to let go of many things in order to be able to get a grip on the reality of the present. I can no longer just drift through life. There are things I want to do and I now have to just get on and do them. Visiting Hardwick Hall was one of those things that I can now mark off my 'bucket list' and I think the memory of it will stay with me for a long time.
Friday, 17 August 2012
Lazy days and cold baked beans
I am having a lazy day today. I have just run out of energy, and as it is raining outside I decided to go back to bed and get some rest. I like these kinds of days when I can just take it easy and not worry about what is going on outside the door. It means that I can snuggle up and do some reading, or blogging. It also means that as I am not going back to the Little Chef next door after the dreadful meal last night I can sit and eat a can of cold baked beans.
I love cold, organic, baked beans. I never bother to cook them because they are so much nicer cold that I realised that I was eating a lot of them before they heated up, so why not be more envionmentally friendly, not to mention thrifty, and cut out the electricity all together. It is like custard. One of my favourite meals is cold soya custard straight from the box. I have even been known to take either of these to work for my lunch if I don't have the time, or the energy, to make a salad for lunch, or the cash to buy a sandwich once I am there.
Maybe the attraction is also that I don't have that much enthusiasm to cook these days and my relationship to food has become somewhat problematic. If you could see me you would know that I am overweight, but that never seems to change even when I go through periods of not eating very much, which I did a couple of months ago when I became very depressed and almost stopped eating all together. I know that this is no way to lose weight anyway, but I have other things to worry about these days. It is more a matter of nourishment and when I go back to work next month I will have strange working hours of 2 - 7pm. I don't like it, but I really had no other choice unless it was to give up work entirely, then I would be on my own for 99% of the week which is not good. So I am going to have to find a new pattern of eating, and maybe using my slow cooker could be an answer. Chuck it all in and leave it to cook while I am out, and then I can eat as soon as I get home.
Nourishment is such an important part of my approach to living with cancer. Getting the right nourishment that is, but I have ceased to fret about it if it doesn't always go to plan. At the moment I am away from home and without refridgeration at a relatively warmer time of year. Therefore I can't really stack up on those foods that need to be stored in a cool environment because I just don't have access to those conditions. Also if you eat out there are limitations on what I feel comfortable about eating, partly because I don't know the source of the food and how it has been grown and produced. I prefer organic produce, especially on the odd occasions that I eat meat, which is usually white meat anyway. I don't want the growth hormones, antibiotic residues and the junk food that animals are fed these days to make them grow quicker, be 'healthier' and cheaper to raise. The same with vegetables, I don't want the pesticides, herbicides and artificial fertilizers that are used to grow tasteless, bland and nutrient free food. What the hell has happened to our food? Instead to feeding and nourishing us it is starting to kill us, and that is before they start to process the stuff.
Wow! Getting off soap box and putting it away neatly, and environmentally. But seriously folks, we all share the same planet and we are destroying it at a rate that should make your head spin if you thought about it too much. There are people starving when other areas of the world have a glut of food and just don't get me started on the bees!
I love cold, organic, baked beans. I never bother to cook them because they are so much nicer cold that I realised that I was eating a lot of them before they heated up, so why not be more envionmentally friendly, not to mention thrifty, and cut out the electricity all together. It is like custard. One of my favourite meals is cold soya custard straight from the box. I have even been known to take either of these to work for my lunch if I don't have the time, or the energy, to make a salad for lunch, or the cash to buy a sandwich once I am there.
Maybe the attraction is also that I don't have that much enthusiasm to cook these days and my relationship to food has become somewhat problematic. If you could see me you would know that I am overweight, but that never seems to change even when I go through periods of not eating very much, which I did a couple of months ago when I became very depressed and almost stopped eating all together. I know that this is no way to lose weight anyway, but I have other things to worry about these days. It is more a matter of nourishment and when I go back to work next month I will have strange working hours of 2 - 7pm. I don't like it, but I really had no other choice unless it was to give up work entirely, then I would be on my own for 99% of the week which is not good. So I am going to have to find a new pattern of eating, and maybe using my slow cooker could be an answer. Chuck it all in and leave it to cook while I am out, and then I can eat as soon as I get home.
Nourishment is such an important part of my approach to living with cancer. Getting the right nourishment that is, but I have ceased to fret about it if it doesn't always go to plan. At the moment I am away from home and without refridgeration at a relatively warmer time of year. Therefore I can't really stack up on those foods that need to be stored in a cool environment because I just don't have access to those conditions. Also if you eat out there are limitations on what I feel comfortable about eating, partly because I don't know the source of the food and how it has been grown and produced. I prefer organic produce, especially on the odd occasions that I eat meat, which is usually white meat anyway. I don't want the growth hormones, antibiotic residues and the junk food that animals are fed these days to make them grow quicker, be 'healthier' and cheaper to raise. The same with vegetables, I don't want the pesticides, herbicides and artificial fertilizers that are used to grow tasteless, bland and nutrient free food. What the hell has happened to our food? Instead to feeding and nourishing us it is starting to kill us, and that is before they start to process the stuff.
Wow! Getting off soap box and putting it away neatly, and environmentally. But seriously folks, we all share the same planet and we are destroying it at a rate that should make your head spin if you thought about it too much. There are people starving when other areas of the world have a glut of food and just don't get me started on the bees!
Thursday, 16 August 2012
Four years ... where has the time gone?
I did a big trip around England four years ago, at about this time of year. It was the summer after my metastatic diagnosis, and it was supposed to be the last summer I would have to be able to get out and visit some of the places I had always wanted to go to. It was one of those Bucket List types of thing so I could mark off some of those 'things to do' ...
Well four years later I have revisited one place which was a highlight of that trip, Southwell Cathedral. It hasn't been a cathedral very long, only since 1884, but it was a Minster before that and the parish church of a small town on the edge of Sherwood Forest. It was a revelation. Somewhere that I had hardly heard of, and which I nearly didn't go to because I was trying to pack so much into that trip. It is a gem, and the carving in the Chapter House is superb. http://en.wikipedia.org/wiki/File:Southwell_minster_028.JPG It was so special to be able to visit it again. The organist was practicing while I was there. I love the sound of sacred music in a sacred space such as a great church because it seems to be so timeless. It is even better if there are not too many people around to break the spell of what it must once have been like in such a place.
I took my aunt back to the village where she was born and brought up in the Cotswolds last week. She thinks that it may be the last time she will be able to revisit the place where she spent such a happy childhood. I know the feeling. There have been many times when I have wondered if I would pass this way again, but I no longer find it difficult to think in such terms. Does it really matter if I never come this way again? After all familiarity breeds contempt, or so the saying goes. Nothing can compare to that first moment, the excitement of seeing something for the first time. These are the images that say in my mind, though sometimes they are also preserved in a photo like the view of the north Devon coast near Lynton that I have as my screen saver at work. It takes me to that warm summer day with a cooling breeze and looking at the waters of the Bristol channel and the ling casting a purple haze on the ground. I may not return but I have brought it with me.
It is coming up to the five year mark of my breast cancer diagnosis. It is further than I even thought I would get, and the best thing is that the journey is continuing.
Well four years later I have revisited one place which was a highlight of that trip, Southwell Cathedral. It hasn't been a cathedral very long, only since 1884, but it was a Minster before that and the parish church of a small town on the edge of Sherwood Forest. It was a revelation. Somewhere that I had hardly heard of, and which I nearly didn't go to because I was trying to pack so much into that trip. It is a gem, and the carving in the Chapter House is superb. http://en.wikipedia.org/wiki/File:Southwell_minster_028.JPG It was so special to be able to visit it again. The organist was practicing while I was there. I love the sound of sacred music in a sacred space such as a great church because it seems to be so timeless. It is even better if there are not too many people around to break the spell of what it must once have been like in such a place.
I took my aunt back to the village where she was born and brought up in the Cotswolds last week. She thinks that it may be the last time she will be able to revisit the place where she spent such a happy childhood. I know the feeling. There have been many times when I have wondered if I would pass this way again, but I no longer find it difficult to think in such terms. Does it really matter if I never come this way again? After all familiarity breeds contempt, or so the saying goes. Nothing can compare to that first moment, the excitement of seeing something for the first time. These are the images that say in my mind, though sometimes they are also preserved in a photo like the view of the north Devon coast near Lynton that I have as my screen saver at work. It takes me to that warm summer day with a cooling breeze and looking at the waters of the Bristol channel and the ling casting a purple haze on the ground. I may not return but I have brought it with me.
It is coming up to the five year mark of my breast cancer diagnosis. It is further than I even thought I would get, and the best thing is that the journey is continuing.
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