I belong to a forum for women with metastatic / advanced / Stage IV breast cancer (choose the title that you prefer) and someone posted this link to a YouTube video about Monsanto, Bill Gates etc.
http://www.youtube.com/watch?v=ijOEmtZyWTg
It makes interesting watching and a few things stuck out for me.
Monsanto are evidently the proud owners of IG Farben! That was the company that produced the chemicals for the Nazi gas chambers, and they had a huge slave labour factory at Auschwitz. The 'workers' were driven until they were no longer useful, then they were loaded into dumper trucks to be taken to the gas chambers and dumped down the steps of the gas chambers then, if necessary dragged into the gas chamber to be murdered.
I appreciate that not all Germans and Austrians (it is often ignored that Hitler was Austrian, not German) were responsible for the war and what was done in their name. It is a stain that must be so difficult to have to live with and comes to terms with as was once shown in a documentary where the children of Nazi war criminals met the children of Holocaust survivors. The children of the Holocaust survivors began to realise that the children of the Nazi's had a much harder past to deal with as the Holocaust survivors looked back at the victims, and the Nazi children to the perpetrators of that crime. But, I digress.
Why was IG Farben allowed to continue, or BASF or the other companies who used slave labour? With Monsanto's record of polution, genetic engineering and creating chemicals which are poisoning the planet it seems to be entirely right that they should be the owners of IG Farben.
We therefore come to the question of the moral responsibility that any company has to do business, and create products that are not only good for their profit margins, but good for their customers and the planet as a whole. What happened to this? Big business has always been somewhat unscrupulous, you only have to briefly think about the slave trade, the sugar plantations etc to realise that. But this is the 21st century for heaven's sake. Haven't they evolved from a mentality that they can do whatever they like in pursuit of profit? Where are their morals? I have absolutely no objection to a company making a profit, and I am in favour of Capitalism, but Capitalism should also have a moral bottom line as well as a monetary bottom line.
Anyone who does not accept that this planet is over stretched and being over-exploited is, in my opinion, living in cloud cuckoo land. The Western Lifestyle has become a rapacious monster, and sadly is one that the rest of the world aspires to. I think it was a statement by George W Bush after the horror of 9/11 who said that the American Way Of Life is 'non-negotiable'. While many things about America should indeed by non-negotiable the whole Western lifestyle of conspicuous consumption is open for negotiation; it has to be. While I absolutely believe in Human Rights somewhere along the line the concept of human morals, and human reponsibility has been displaced by 'I want it and I'm going to have it, and I don't care about the consequences' that has become Human Rights. I had a disagreement with a colleague this week about everyone's right to have as many children as they want. He considers that it is a human right to have children, which it is to a certain extent, but there is also the human responsibilty to have the children that you can afford to raise, and to accept the responsibilty for those children. A badly behaved feral child is not the responsiblity or the creation of the schools, the police, the politicians, the social welfare system (or the lack thereof) but is the creation and responsibilty of the parents. What does your income have to do with raising children the right way, to accept their moral and social responsibilites to their family, community and society as a whole? When did putting any effort into your education become too much of a drag, and not the student's responsibility? We all have to put effort into things. After all there is no such thing as a free lunch, because even if the money does not come out of your pocket, someone somewhere it paying for it.
I believe the American constitution puts into words the ethos behind democracy that we all have a right to life, liberty and the pursuit of happiness. Couldn't agree more. But in return we have certain moral and personal responsibilities that are at the foundation of those rights.
Saturday, 30 June 2012
Friday, 29 June 2012
Meditation and visualisation
I was waffling on about this a few days ago and promised that I would write more about it. Now, I know that you all hang on my every word, because after all I made it clear in the Blog title that you are all entitled to my opinion, but a promise is a promise so prepared to zone out!
First I have to say that I don't meditate as much as I should, at least not for long periods of time. I tend to use Micro-Mindfulness instead. But if you want to try meditation I would recommend the Chopra Centre summer meditation challenge which begins on 16 July as a good introduction.
http://www.chopracentermeditation.com/bestsellers/landingpage.aspx?bookid=169
Also it is free so you can dip your toe in the water without spending money. One draw back to such meditations is that you can't choose the voice of the person who is leading the meditation. This really is important because if you are distracted by a voice that you personally find annoying it will stop you getting the full benefit; but as I said this is free and will send a new meditation to you each day for 21 Days.
If you do want to try some guided meditations I would recommend that you take the opportunity to listen to them first; the same if you want to use just music to meditate to. Try before you buy. I have mainly used MP3 downloads, some of which have been free, and others which I have purchased from Amazon. I am sure the iTunes and other such facilities have the same capability, but what I like about Amazon is that you can listen to a sample of the track or voice before you buy. Also many of the meditations and piece of music that I have purchased have been less than £1. Also if you have a favourite piece of classical music you can try different versions until you find the one which is phrased just as you like it. It wasn't until I used this facility that I really appreciated how difference interpretations of the same piece of music can be. I love Vaughan-Williams 'The Lark Ascending' and listened to all those available before making my choice.
This is where visualisation can be so powerful. I have just put on the VW Lark and it can instantly take me to The Ridgeway at Uffington by the White Horse and walking out to Waylands Smithy on a lovely warm day with a cooling breeze, and where I could hear some Larks singing. It takes me to a place which is warm and safe, happy and contented. This piece of music is about 15 minutes long, which is about the time it takes for my treatment to be delivered every four weeks. During that time I can absorb the music, the peace of the visualisation that I carry with me at all times whilst I also visualise the treatment going to the places in my body where it is really needed. This makes the treatment a positive thing which is working for my wellbeing, which I believe is one of the reasons that I have never had any bad side effects from my treatments. This could just be wishful thinking but I have always felt that if you resist a procedure or treatment it will make it harder for your body to accept it, and make it feel worse than it is.
I have also found that meditation and visualisation can really help with dealing with pain as well. Again, to me pain increases the more you resist it. By relaxing and allowing yourself to go the the area with the pain you can then focus on it and with each breathe release a bit more of the pain until you can even it out a bit and co-exist with it.
Of course these techniques are not only useful to deal with cancer and the associated problems on a physical level. They are of emotional, personal and spiritual value as well. When I find myself getting wound up about something Micro-Mindfulness, as I call it, can be really useful. Mindfulness is a meditation technique that trains you to connect with the breathe coming in and going out of your body. No breathing techniques are needed, just the ability to focus on the cooler air coming into the body, and the warmer air leaving it. To focus on the rise and fall of the lower belly as you breathe in and out. This focus can allow me to stop what I am doing and appreciate that right here, and right now I am alive, safe, secure and that there is nothing to fear right now. This can stop a problem getting out of hand when you begin to realise that the present is made up of just such moments, and that it is this moment in which I exist. The anxiety about the past or the future is somewhat futile because it is not what is happening now. Sometimes it almost feels as though I can suspend time and remain for a while in this safe bubble.
I make no claims to be an expert in any of this, and as I have said I don't do it enough or as often as I should but it has become an important and integral part of my strategy for living with being Stage IV. I have come to accept that what I do to help myself is every bit as important, if not more so, than what the medical profession can do for me. It gives me the time and space in which to appreciate actually being alive.
First I have to say that I don't meditate as much as I should, at least not for long periods of time. I tend to use Micro-Mindfulness instead. But if you want to try meditation I would recommend the Chopra Centre summer meditation challenge which begins on 16 July as a good introduction.
http://www.chopracentermeditation.com/bestsellers/landingpage.aspx?bookid=169
Also it is free so you can dip your toe in the water without spending money. One draw back to such meditations is that you can't choose the voice of the person who is leading the meditation. This really is important because if you are distracted by a voice that you personally find annoying it will stop you getting the full benefit; but as I said this is free and will send a new meditation to you each day for 21 Days.
If you do want to try some guided meditations I would recommend that you take the opportunity to listen to them first; the same if you want to use just music to meditate to. Try before you buy. I have mainly used MP3 downloads, some of which have been free, and others which I have purchased from Amazon. I am sure the iTunes and other such facilities have the same capability, but what I like about Amazon is that you can listen to a sample of the track or voice before you buy. Also many of the meditations and piece of music that I have purchased have been less than £1. Also if you have a favourite piece of classical music you can try different versions until you find the one which is phrased just as you like it. It wasn't until I used this facility that I really appreciated how difference interpretations of the same piece of music can be. I love Vaughan-Williams 'The Lark Ascending' and listened to all those available before making my choice.
This is where visualisation can be so powerful. I have just put on the VW Lark and it can instantly take me to The Ridgeway at Uffington by the White Horse and walking out to Waylands Smithy on a lovely warm day with a cooling breeze, and where I could hear some Larks singing. It takes me to a place which is warm and safe, happy and contented. This piece of music is about 15 minutes long, which is about the time it takes for my treatment to be delivered every four weeks. During that time I can absorb the music, the peace of the visualisation that I carry with me at all times whilst I also visualise the treatment going to the places in my body where it is really needed. This makes the treatment a positive thing which is working for my wellbeing, which I believe is one of the reasons that I have never had any bad side effects from my treatments. This could just be wishful thinking but I have always felt that if you resist a procedure or treatment it will make it harder for your body to accept it, and make it feel worse than it is.
I have also found that meditation and visualisation can really help with dealing with pain as well. Again, to me pain increases the more you resist it. By relaxing and allowing yourself to go the the area with the pain you can then focus on it and with each breathe release a bit more of the pain until you can even it out a bit and co-exist with it.
Of course these techniques are not only useful to deal with cancer and the associated problems on a physical level. They are of emotional, personal and spiritual value as well. When I find myself getting wound up about something Micro-Mindfulness, as I call it, can be really useful. Mindfulness is a meditation technique that trains you to connect with the breathe coming in and going out of your body. No breathing techniques are needed, just the ability to focus on the cooler air coming into the body, and the warmer air leaving it. To focus on the rise and fall of the lower belly as you breathe in and out. This focus can allow me to stop what I am doing and appreciate that right here, and right now I am alive, safe, secure and that there is nothing to fear right now. This can stop a problem getting out of hand when you begin to realise that the present is made up of just such moments, and that it is this moment in which I exist. The anxiety about the past or the future is somewhat futile because it is not what is happening now. Sometimes it almost feels as though I can suspend time and remain for a while in this safe bubble.
I make no claims to be an expert in any of this, and as I have said I don't do it enough or as often as I should but it has become an important and integral part of my strategy for living with being Stage IV. I have come to accept that what I do to help myself is every bit as important, if not more so, than what the medical profession can do for me. It gives me the time and space in which to appreciate actually being alive.
Wednesday, 27 June 2012
Olympic pride
I was looking at the coverage of the Olympic torch procession from yesterday. Many people will carry it, and it will mean something special to each one of them, but maybe it will have meant the most to one of those who carried it yesterday.
Ben Parkinson is a British soldier who had both legs blown off, a broken back and brain injuries in Afghanistan in 2006. Yesterday comrades from his regiment and many others gathered to cheer every step he took. It is something that makes you just want to burst with pride, humility and admiration. It may only have been 300m, but it is a mountain that he has climbed to do this. Look at his eyes, the determination, concentration and sheer joy of being able to achieve this is shining through. The look of 'you told me I couldn't do this, but I have proved you wrong' is there in every second of those 300m.
http://www.bbc.co.uk/news/uk-18594300
http://www.youtube.com/watch?v=cvu_0NlEXz8&feature=youtu.be
In a tiny way I understand that feeling, and the determination to prove them wrong. When I was first told my cancer had spread and was considered I was left with the impression that I should just curl up in a corner and die. The emotional journey of being able to come to terms the diagnosis; the acceptance of the fact that this disease will almost inevitably kill me; and the decision that I was going to move on from this has not been an easy one for me, or those who have sometimes found themselves in the firing line during the bad times.
The determination, of course, is not always there. I am a human being after all, not a robot. There are times when I just want to be dead as soon as possible because I feel as though I am a burden to those around me, that I am too nasty and that they won't understand. I think Ben would understand, though his challenge has been so much greater than mine. There is something that binds those of us who have experienced the reality that we truly are not immortal, and I am grateful that there are so many people who don't understand this feeling and , God knows, I wish that they never would understand it. The determination stays there in the back of your mind and keeps you going. It really is only one step at a time that gets you there and that is what I continue to do. I may not be too steady on my feet, and the legs may give way occasionally, but I know and understand that look in Ben's eyes.
Maybe he should light the Olympic flame at the opening ceremony with Steve Redgrave. Both have succeeded and know how to win. Steve may have 5 Olympic Gold Medals, but I bet you that Ben's Olympics has been 'won' with far greater grit and courage than any medal ever could.
Ben Parkinson is a British soldier who had both legs blown off, a broken back and brain injuries in Afghanistan in 2006. Yesterday comrades from his regiment and many others gathered to cheer every step he took. It is something that makes you just want to burst with pride, humility and admiration. It may only have been 300m, but it is a mountain that he has climbed to do this. Look at his eyes, the determination, concentration and sheer joy of being able to achieve this is shining through. The look of 'you told me I couldn't do this, but I have proved you wrong' is there in every second of those 300m.
http://www.bbc.co.uk/news/uk-18594300
http://www.youtube.com/watch?v=cvu_0NlEXz8&feature=youtu.be
In a tiny way I understand that feeling, and the determination to prove them wrong. When I was first told my cancer had spread and was considered I was left with the impression that I should just curl up in a corner and die. The emotional journey of being able to come to terms the diagnosis; the acceptance of the fact that this disease will almost inevitably kill me; and the decision that I was going to move on from this has not been an easy one for me, or those who have sometimes found themselves in the firing line during the bad times.
The determination, of course, is not always there. I am a human being after all, not a robot. There are times when I just want to be dead as soon as possible because I feel as though I am a burden to those around me, that I am too nasty and that they won't understand. I think Ben would understand, though his challenge has been so much greater than mine. There is something that binds those of us who have experienced the reality that we truly are not immortal, and I am grateful that there are so many people who don't understand this feeling and , God knows, I wish that they never would understand it. The determination stays there in the back of your mind and keeps you going. It really is only one step at a time that gets you there and that is what I continue to do. I may not be too steady on my feet, and the legs may give way occasionally, but I know and understand that look in Ben's eyes.
Maybe he should light the Olympic flame at the opening ceremony with Steve Redgrave. Both have succeeded and know how to win. Steve may have 5 Olympic Gold Medals, but I bet you that Ben's Olympics has been 'won' with far greater grit and courage than any medal ever could.
Tuesday, 26 June 2012
Result!
The results are in (of the kidney scan) and they are good. It seems that the kidney is working well again, and my recent blood tests are all as normal as I am ever going to get. The extra special good news is that the kidney stones that were detected by the ultra sound scan on 8th May have rolled away and 'passed' into history! I know that I have not been getting the same kind of pain in my left kidney area for the last two or three weeks, so the pains must have been the parting of the ways. Good thing that they were so small (6mm max) and so could find their way out without any help. When I was 12 I had kidney stones removed in a major operation (40 years ago) which left me with a huge scar. Then the largest stone was the size of a sixpence piece, which is about 1.5cm across, which for a twelve year old is huge.
So today has been a good day...even better they had forgotten to schedule my treatment today as the message was not passed on by the person who booked the appointment with the oncologist, as it has to be done on another screen. Anyway, normally this would have been a disaster and involved waiting around to see if they could fit me in, but it seems I can now have the treatments at Oakhaven Hospice in the town where I live, so I will be popping along at 2.30 tomorrow afternoon for the Zoledronic Acid iv treatment. For those of you not familiar with the delights of bone metastases treatment this is a bisphosphonate to strengthen the bones that are being attacked by the cancer. It was first developed to treat osteoporosis but it has shown to be very affective in treating breast cancer bone mets. I have been having this iv treatment nearly every four weeks since February 2008, and so far it has been helping to keep things under control. For me it has had very few side effects, except for the first few infusions which made me very achy, but now I can tolerate it at full speed which means that it can be given in about 15 minutes.
So far with the different treatments I have had I have been able to tolerate them very well. I think this is partly because I have always tried to think of the treatments as a positive thing which is helping my body deal with the cancer. I always make sure I drink about one and a half litres of water to help flush out my system, and I have been drinking a lot of water recently, which probably helped with the kidney problem.
I use visualisation and meditative music to help me accept the treatment into my body and focus it on the parts of my body that needs it the most. I think if you can stay relaxed it is easier to absorb the medication into your body. If you resist it, and you think you are going to be sick and have a bad reaction inevitably you will. I remember sitting in the treatment room at the hospital and a young woman next to me was having her second chemo treatment and I could see the tension and resistence in her body. I left soon after they started so I don't know what her reaction was, but to me she was already convinced that she was going to be ill before they had even started to administer it.
I tend to visualise my cancer cells as bubbles that are being burst by my T-cells, which look like a sword - pop, pop, pop! But it is late and I must get to bed, so I will continue with this theme at a later date. I didn't have a good night last night as my kidneys have gone into overdrive so I had to get up five times in the night, then I got really bad hiccups about one o'clock in the morning which went on for well over half an hour, by which time I was wide awake! Then I managed to knock the setting on my alarm clock and ended up hauling myself out of bed an hour early! I couldn't believe it! I thought the battery in my clock in the kitchen has run out, but it was actually telling the right time!
...and so to bed...
So today has been a good day...even better they had forgotten to schedule my treatment today as the message was not passed on by the person who booked the appointment with the oncologist, as it has to be done on another screen. Anyway, normally this would have been a disaster and involved waiting around to see if they could fit me in, but it seems I can now have the treatments at Oakhaven Hospice in the town where I live, so I will be popping along at 2.30 tomorrow afternoon for the Zoledronic Acid iv treatment. For those of you not familiar with the delights of bone metastases treatment this is a bisphosphonate to strengthen the bones that are being attacked by the cancer. It was first developed to treat osteoporosis but it has shown to be very affective in treating breast cancer bone mets. I have been having this iv treatment nearly every four weeks since February 2008, and so far it has been helping to keep things under control. For me it has had very few side effects, except for the first few infusions which made me very achy, but now I can tolerate it at full speed which means that it can be given in about 15 minutes.
So far with the different treatments I have had I have been able to tolerate them very well. I think this is partly because I have always tried to think of the treatments as a positive thing which is helping my body deal with the cancer. I always make sure I drink about one and a half litres of water to help flush out my system, and I have been drinking a lot of water recently, which probably helped with the kidney problem.
I use visualisation and meditative music to help me accept the treatment into my body and focus it on the parts of my body that needs it the most. I think if you can stay relaxed it is easier to absorb the medication into your body. If you resist it, and you think you are going to be sick and have a bad reaction inevitably you will. I remember sitting in the treatment room at the hospital and a young woman next to me was having her second chemo treatment and I could see the tension and resistence in her body. I left soon after they started so I don't know what her reaction was, but to me she was already convinced that she was going to be ill before they had even started to administer it.
I tend to visualise my cancer cells as bubbles that are being burst by my T-cells, which look like a sword - pop, pop, pop! But it is late and I must get to bed, so I will continue with this theme at a later date. I didn't have a good night last night as my kidneys have gone into overdrive so I had to get up five times in the night, then I got really bad hiccups about one o'clock in the morning which went on for well over half an hour, by which time I was wide awake! Then I managed to knock the setting on my alarm clock and ended up hauling myself out of bed an hour early! I couldn't believe it! I thought the battery in my clock in the kitchen has run out, but it was actually telling the right time!
...and so to bed...
Sunday, 24 June 2012
Good weather for The Boss
The weather at the Isle of Wight festival has been making the news - endless mud - but Springsteen will have had good weather for his trip over on the 4pm ferry from Lymington to Yarmouth, and for his set this evening. It is a really lovely evening with sun and blue skies. My brother works on the aforementioned ferry and they evidently had a really busy morning with people coming back to the mainland because they had just had enough. Last night it poured and the wind howled again, and I think that might have been just too much for some of the festival goers, Boss or no Boss. However they might just have missed out on the best part of the festival, and it brings to mind Hendrix's set at Woodstock where he played to an almost empty field, though everyone claims that they were there.
We all do it sometimes...give up on things when we should see it through to the end. Sometimes when you are in the midst of something it is difficult to see that there can be a happy ending to what is happening. I know I do this on occasion; I can only focus on what is going wrong right now but then I usually just put my head down and trudge onwards, though not necessarily without a growl and a loss of temper. I am getting better at this though and I think that is because of Mindfulness Meditation. I don't practice it anywhere near as much as I should, but I do use it a lot to centre myself and bring my attention back to my breathing and reminding myself that right now everything is really ok, I am safe and it is ok. I can take myself to certain places and marvel at the beauty of a place I have been when it was warm and sunny, and yes, everything was ok.
I was thinking about natural beauty as I was driving home across the New Forest from my acupuncture appointment in Wimborne on Friday. I actually live in a really beautiful part of the world, but it is something that I really take for granted because I have always lived in this area. We take for granted what is around us all the time, be that the natural world, the people, the way we think. So sometimes I need to remind myself what is good about my life when things just seem to be going wrong all the time. Too often we just look at the big events and highlights rather than the normal and everyday. Those moments which stay in the memory tend to be those Big Moments, a view, an experience; but life is mainly made up of things that are far more mundane and these are the things we should also value. The main reason I went for the new post as Attendance Advisor was because of the routine that working gives my life. It certainly isn't for the money as it will be a third less hours, and therefore a third less income, but the routine and the social contact is more important than that. The little things in life really can make it worth living.
We all do it sometimes...give up on things when we should see it through to the end. Sometimes when you are in the midst of something it is difficult to see that there can be a happy ending to what is happening. I know I do this on occasion; I can only focus on what is going wrong right now but then I usually just put my head down and trudge onwards, though not necessarily without a growl and a loss of temper. I am getting better at this though and I think that is because of Mindfulness Meditation. I don't practice it anywhere near as much as I should, but I do use it a lot to centre myself and bring my attention back to my breathing and reminding myself that right now everything is really ok, I am safe and it is ok. I can take myself to certain places and marvel at the beauty of a place I have been when it was warm and sunny, and yes, everything was ok.
I was thinking about natural beauty as I was driving home across the New Forest from my acupuncture appointment in Wimborne on Friday. I actually live in a really beautiful part of the world, but it is something that I really take for granted because I have always lived in this area. We take for granted what is around us all the time, be that the natural world, the people, the way we think. So sometimes I need to remind myself what is good about my life when things just seem to be going wrong all the time. Too often we just look at the big events and highlights rather than the normal and everyday. Those moments which stay in the memory tend to be those Big Moments, a view, an experience; but life is mainly made up of things that are far more mundane and these are the things we should also value. The main reason I went for the new post as Attendance Advisor was because of the routine that working gives my life. It certainly isn't for the money as it will be a third less hours, and therefore a third less income, but the routine and the social contact is more important than that. The little things in life really can make it worth living.
Saturday, 23 June 2012
Annoyed, frustrated and fed up
I had hoped to be able to go up to London today to meet a friend who is in the UK briefly but it is not to be. I am starting to get annoyed, frustrated and fed up with the lack of a diagnosis of just what the hell is going on with the problem with my left ureter.
This problem has been showing up on CT scans for four years or so, and until my scan on 28 March 2012 it had remained the same. The report of that scan showed that it could be 'disease', or as it would be known to others, a progression of my cancer. When I was in hospital in March it was vital on the Friday that I stayed in to have further investigations, but by Saturday morning it was deemed not to be that much of a problem and I could go home. No real explanation as to why they had changed their minds so abruptly. This is annoying on several levels, not least of which is the fact that when I filled in one of the forms when I was admitted I put that YES I did want to know what was going on. It is now nearly three months later when I see, hopefully, the oncologist on Tuesday morning; though that will depend on how completely over booked his clinic is. Last month they had basically double booked him and I eventually got to see a nurse practitioner and hour and a half after my appointment time. She then had to consult him and I was told I would have another scan before my next appointment.
That scan appointment only come through because my sister-in-law was nipping at their heels, otherwise I would probably still be waiting. All in all I just have always had the impression that they are just going to let things progress, and they will just deal with the symptoms with palliative care. So how much does this make me feel that they want me to go into a corner and curl up and die? TOTALLY. This was the impression that I got from my first oncologist, and I have never really felt that Southampton General Hospital has any intention of doing anything but the bare minimum while I die as they don't want to waste money on me.
This was why I felt I needed to go out and find some way of helping myself. I lost a friend to stomach cancer 8 years ago and I stayed with her during the final part of her illness. It was through friends of hers that I first heard of some of the alternative and complimentary ways of dealing with cancer. Therefore I already knew about B17, and the Bristol Cancer Care approach, now Penny Brohn Cancer Care. Even then I have found difficulties. I twice arranged to go on residential courses at Penny Brohn, only to be told very close to the date that they were running them for people who hadn't attended the centre before (I did a one day Introduction and another day course) so it wouldn't really be worth my attending! Yeh, you guessed it I lost it, especially as the second time I booked I was assured that the retreat I had booked for was not for beginners. Rejected yet again.
When I went to the Breast Cancer Haven in Hereford and plucked up the courage to go in for a class they were advertised I was treated like some pervert who had comed to look at breast cancer patients, and was also informed that I had to book. No such information was on their website, or on the board outside the front door. I had actually travelled 150 miles and booked into a hotel for a few nights to be able to attend this class. Rejected yet again.
Too many things about cancer, and breast cancer in particular, seem to be so cliquey, and so 'ladies who lunch' who have time to give to the right sorts of charities. For instance I would like to help out in one of the shops that supports my local Hospice, but the people in the shop are so superior that I don't think I would fit in at all. I have never donated anything to the shop as I don't think I have anything which is 'good' enough to be accepted. It all seems to be posh labels, not supermarket brands and Evans which is the type of clothes that I would have to donate. It is one of the reasons why the town I live in made the national papers because of the snobby attitudes of some of the residents who didn't want an Argos shop in the town as it would lower the tone. These people forget that now everyone who lives here has a yacht, a second home and a big income. These are not ladies who have to work for a living as some of us do.
I may have commented on this before, but breast cancer is all about the 'fluffy pink survivors' to whom we are a bit of an embarrassment who is spoiling their statistics. I once asked Cancer Research UK how much of their research budget they spent on research into secondary cancer of any sort - turns to be about 1%. It is all about catching cancer early so it can be treated. Well folks, what about those of us who have been ignored by doctors, despite scientific evidence of having cancer, for years until it is a case of 'sorry, too late to do anything other than making your death easier'. Thanks for NOTHING and SORRY for spoiling the stats, and the profits of Big Pharma. After all they don't want to help us either as we would make their creative statistics, and therefore their profits look bad.
Right. I think that is enough bile for now. The sun is out and I need to get some bone strengthening exercise by walking into town...
This problem has been showing up on CT scans for four years or so, and until my scan on 28 March 2012 it had remained the same. The report of that scan showed that it could be 'disease', or as it would be known to others, a progression of my cancer. When I was in hospital in March it was vital on the Friday that I stayed in to have further investigations, but by Saturday morning it was deemed not to be that much of a problem and I could go home. No real explanation as to why they had changed their minds so abruptly. This is annoying on several levels, not least of which is the fact that when I filled in one of the forms when I was admitted I put that YES I did want to know what was going on. It is now nearly three months later when I see, hopefully, the oncologist on Tuesday morning; though that will depend on how completely over booked his clinic is. Last month they had basically double booked him and I eventually got to see a nurse practitioner and hour and a half after my appointment time. She then had to consult him and I was told I would have another scan before my next appointment.
That scan appointment only come through because my sister-in-law was nipping at their heels, otherwise I would probably still be waiting. All in all I just have always had the impression that they are just going to let things progress, and they will just deal with the symptoms with palliative care. So how much does this make me feel that they want me to go into a corner and curl up and die? TOTALLY. This was the impression that I got from my first oncologist, and I have never really felt that Southampton General Hospital has any intention of doing anything but the bare minimum while I die as they don't want to waste money on me.
This was why I felt I needed to go out and find some way of helping myself. I lost a friend to stomach cancer 8 years ago and I stayed with her during the final part of her illness. It was through friends of hers that I first heard of some of the alternative and complimentary ways of dealing with cancer. Therefore I already knew about B17, and the Bristol Cancer Care approach, now Penny Brohn Cancer Care. Even then I have found difficulties. I twice arranged to go on residential courses at Penny Brohn, only to be told very close to the date that they were running them for people who hadn't attended the centre before (I did a one day Introduction and another day course) so it wouldn't really be worth my attending! Yeh, you guessed it I lost it, especially as the second time I booked I was assured that the retreat I had booked for was not for beginners. Rejected yet again.
When I went to the Breast Cancer Haven in Hereford and plucked up the courage to go in for a class they were advertised I was treated like some pervert who had comed to look at breast cancer patients, and was also informed that I had to book. No such information was on their website, or on the board outside the front door. I had actually travelled 150 miles and booked into a hotel for a few nights to be able to attend this class. Rejected yet again.
Too many things about cancer, and breast cancer in particular, seem to be so cliquey, and so 'ladies who lunch' who have time to give to the right sorts of charities. For instance I would like to help out in one of the shops that supports my local Hospice, but the people in the shop are so superior that I don't think I would fit in at all. I have never donated anything to the shop as I don't think I have anything which is 'good' enough to be accepted. It all seems to be posh labels, not supermarket brands and Evans which is the type of clothes that I would have to donate. It is one of the reasons why the town I live in made the national papers because of the snobby attitudes of some of the residents who didn't want an Argos shop in the town as it would lower the tone. These people forget that now everyone who lives here has a yacht, a second home and a big income. These are not ladies who have to work for a living as some of us do.
I may have commented on this before, but breast cancer is all about the 'fluffy pink survivors' to whom we are a bit of an embarrassment who is spoiling their statistics. I once asked Cancer Research UK how much of their research budget they spent on research into secondary cancer of any sort - turns to be about 1%. It is all about catching cancer early so it can be treated. Well folks, what about those of us who have been ignored by doctors, despite scientific evidence of having cancer, for years until it is a case of 'sorry, too late to do anything other than making your death easier'. Thanks for NOTHING and SORRY for spoiling the stats, and the profits of Big Pharma. After all they don't want to help us either as we would make their creative statistics, and therefore their profits look bad.
Right. I think that is enough bile for now. The sun is out and I need to get some bone strengthening exercise by walking into town...
Thursday, 21 June 2012
I got the job
I had my outcome meeting today about my application for one of the new posts at the college where I work. We have been under treat of redundancy because of the reorganisation of the Student Services area where I work, so after a consultation period we all had to take voluntary redundancy or apply for one or more of the new posts. Evidently I put in a good application and did a good interview so I got one of the two posts as Attendance Advisor. It also probably helped that I was the only person to apply for these two posts, so I suppose that the next stage is that they will advertise the other post internally, and then externally. I think that everyone got a position that they wanted, though neither applicant was successful for the supervisor role, but personally I think that it would be better to have someone from outside the current team to take that role on. At the moment it is all feels a bit as though they aren't sure where it is all going, and certainly they aren't sure how it will work, or where we will physically be working and so on. However as I am the lowest in rank none of that is my problem, there are people much higher up the pay scale to make those decisions.
It will mean that I will be working 2 - 7pm on four days of the week during term time, which I am not delighted about; and it will also mean a third less pay as my hours have been cut by a third. This is not ideal, but I probably won't have to pay, or not pay very much, income tax so that might help to soften the blow a bit.
Anyway, it will be interesting to see how it works out. At the moment the job market around here is not good, and with my health complications it would be difficult to find something else. That is partly the problem of living in a rural area without many big employers and I would not want to travel any distance. At the moment I have a 10 mile commute to college and home each working day which is not bad...except for this morning when the traffic lights were out early on the area where they are laying some new pipes. Took me twice as long to get less than a mile, than it took me to get the rest of the way. They did that a couple of times last week, but I thought maybe someone complained about them putting out the temporary lights too early at the busiest time of the day, but maybe I was wrong. One thing about living in a rural area is that I don't usually have to sit in queues, except at the railway crossing just before getting to work.
Have my pre-treatment blood test early tomorrow so I need to go to bed. I'm tired. Goodnight...
It will mean that I will be working 2 - 7pm on four days of the week during term time, which I am not delighted about; and it will also mean a third less pay as my hours have been cut by a third. This is not ideal, but I probably won't have to pay, or not pay very much, income tax so that might help to soften the blow a bit.
Anyway, it will be interesting to see how it works out. At the moment the job market around here is not good, and with my health complications it would be difficult to find something else. That is partly the problem of living in a rural area without many big employers and I would not want to travel any distance. At the moment I have a 10 mile commute to college and home each working day which is not bad...except for this morning when the traffic lights were out early on the area where they are laying some new pipes. Took me twice as long to get less than a mile, than it took me to get the rest of the way. They did that a couple of times last week, but I thought maybe someone complained about them putting out the temporary lights too early at the busiest time of the day, but maybe I was wrong. One thing about living in a rural area is that I don't usually have to sit in queues, except at the railway crossing just before getting to work.
Have my pre-treatment blood test early tomorrow so I need to go to bed. I'm tired. Goodnight...
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