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...
Wednesday 20 June 2012
Work is a drag
I don't really like this time of year at work because it is very quiet, and I'm not very good at taking it easy and chatting as I am used to have to work at top speed to get through my work load. This week one of my colleagues is on holiday in Spain and I am having to do her job and mine, basically, and I still don't have enough to do. And as I am on the front desk dealing with the students I can't really hide away and read a book, so I am pretending to do something while I blog.
It does raise the question of why am I trying to stay working at the college? I do wonder sometimes if I have made the right decision. When you are Stage IV it is difficult to be able to make decisions about things like work. Do I give up? What would my life be like without work? Am I wasting what time I have doing a mundane job? What about finances? For that matter how much time do I have? What do I do with that time?
I like the concept of being 'normal' and still being able to work and contribute something to society. I don't want to be sitting at home, starring at the walls and waiting to die. Stage IV doesn't come with a 'best before', 'use by', or 'display until' date because there are no absolute barriers. In my case it has been a matter of continual adaption to my conditions - physical, mental and emotional and these are subtle and ongoing changes which affect not only myself but my family and those I work with. On occasion this means that I am not the easiest person to be around but, just as I accept that others have a bad day, I expect them to accept that I am not always at my best. Sometimes it is difficult to remember that there are others around when I am having a 'crisis' because there is always the feeling that I am on my own with this; and besides there is so much junk floating around in my head some times I wouldn't wish that on anyone.
Oh joy - time to go home...
It does raise the question of why am I trying to stay working at the college? I do wonder sometimes if I have made the right decision. When you are Stage IV it is difficult to be able to make decisions about things like work. Do I give up? What would my life be like without work? Am I wasting what time I have doing a mundane job? What about finances? For that matter how much time do I have? What do I do with that time?
I like the concept of being 'normal' and still being able to work and contribute something to society. I don't want to be sitting at home, starring at the walls and waiting to die. Stage IV doesn't come with a 'best before', 'use by', or 'display until' date because there are no absolute barriers. In my case it has been a matter of continual adaption to my conditions - physical, mental and emotional and these are subtle and ongoing changes which affect not only myself but my family and those I work with. On occasion this means that I am not the easiest person to be around but, just as I accept that others have a bad day, I expect them to accept that I am not always at my best. Sometimes it is difficult to remember that there are others around when I am having a 'crisis' because there is always the feeling that I am on my own with this; and besides there is so much junk floating around in my head some times I wouldn't wish that on anyone.
Oh joy - time to go home...
Monday 18 June 2012
Yep! Them is blue skies!
If you are in the UK you know how diabolical the weather has been lately, and if you are overseas you may have seen some of the Diamond Jubilee coverage and noticed that the weather was just not playing nice. In fact a friend had a birthday a week ago and I e-mailed her and said that it can't be that often that she has had a cold, grey and wet birthday...now she knows what it feels like to have a birthday in February. I had actually forgotten her birthday because the weather has been so cold I just hadn't realised that it is June. Wimbledon will soon be with us for goodness sake and while I don't mind the rain too much, even I think it would be nice for it to be just a little bit warmer.
Today is slightly different. I had actually forgotten how blue the sky can be, and combined with it not being too hot has made today just about perfect infact. It is strange how the weather can affect your mood and just make it that much easier to get going in the morning, and how everything seems to take a little bit less effort. Personally I love the British weather. I couldn't imagine wanting to live somewhere where it is hot and sunny all the time, because how do you really appreciate a beautiful day when it comes along? It must be in my DNA that I have a pathological need to be rained on for x number of days per annum; but not necessarily as much as it has recently and all at one time. We all need something to mark out the special things in our lives. These marks are not always something as obvious as a blue sky after seemingly endless rain, because they are often ordinary things that remind us how special it is to be alive. A smile, a song or something that jogs a special memory can be all that we need to make a day and lighten the darker days or moods. It is like being out driving and suddenly turning a corner and seeing a wonderful view that can take your breath away.
These are actually the things which make my life worth living. When I meditate I take myself to a view on the north Devon coast which is also the screen saver on my computer at work; or the view as you look back from the climb up to Belas Knap in the Cotswolds, or any of a miriad of other memories. Unfortunately we cannot hold these pictures and memories in our mind all the time, but this is what makes them special - the very fact that they are not there all the time, because if they were there all the time they wouldn't be special would they?
Today is slightly different. I had actually forgotten how blue the sky can be, and combined with it not being too hot has made today just about perfect infact. It is strange how the weather can affect your mood and just make it that much easier to get going in the morning, and how everything seems to take a little bit less effort. Personally I love the British weather. I couldn't imagine wanting to live somewhere where it is hot and sunny all the time, because how do you really appreciate a beautiful day when it comes along? It must be in my DNA that I have a pathological need to be rained on for x number of days per annum; but not necessarily as much as it has recently and all at one time. We all need something to mark out the special things in our lives. These marks are not always something as obvious as a blue sky after seemingly endless rain, because they are often ordinary things that remind us how special it is to be alive. A smile, a song or something that jogs a special memory can be all that we need to make a day and lighten the darker days or moods. It is like being out driving and suddenly turning a corner and seeing a wonderful view that can take your breath away.
These are actually the things which make my life worth living. When I meditate I take myself to a view on the north Devon coast which is also the screen saver on my computer at work; or the view as you look back from the climb up to Belas Knap in the Cotswolds, or any of a miriad of other memories. Unfortunately we cannot hold these pictures and memories in our mind all the time, but this is what makes them special - the very fact that they are not there all the time, because if they were there all the time they wouldn't be special would they?
Sunday 17 June 2012
Race For Life ???
For two years after my secondary diagnosis I did the Cancer Research UK Race For Life along Bournmouth promenade with friends and/or family. For those of you who don't know this is a 5km ladies only walk or race which are held all over the UK to raise money for Cancer Research UK which is one of the largest cancer research charities in the world. Why, you may ask, did I not take part in the Race For Life today?
Over a period of time I have begun to really wonder where the money raised actually goes. I contacted Cancer Research UK and asked how much of their research budget did they spend on any form of metastatic, secondary cancer. After all this is the cancer which actually kills most of the patients who die of cancer. Their answer was that they spent £4 million. A lot of money, until you consider that they have a research budget of £400 million a year. So about 1% is spend on researching the types of cancers that kill the most people. This is the primary reason I don't take part any longer.
Why do I feel that charities now waste a lot of money on CEOs who are highly paid, and other paid staff who fund raise, raise awareness of the symptoms, organise the shop, and much more. But how much money has to be raised before there is anything to actually contribute to the cause? While I appreciate that these are full time jobs some of these folks seem to be paid an awful lot of money. Going into the voluntary sector is no longer a vocation but a serious career move.
With breast cancer there is already a lot of information to raise awareness that is freely available, so why are there so many charities doing the same thing, as well as the NHS? Lets face it there are a lot of people out there who won't listen, come what may. And whose fault is that? Now there's a question.
A lot of advice is available about how to try and prevent cancer and about life style and diet that can help prevent the disease, but constantly the media and the vested interests undermine this information. One day potato is good for you, the next it isn't. Is salt good or bad for you, bearing in mind that it is a mineral that we all need to survive, and what about fats? Not all fats are created equal, though all are needed but in the right ratio, so which one is good and which is bad; this week. It is all treated as a good source for a story and a few emotive headlines. After all smoking was considered to be healthy at one time, and even when the truth was known the vested interests ignored this information so their profit margins were not affected. Smokers also ignore the information scientific evidence that tobacco caused cancer, but then we all thought this wouldn't happen to us, didn't we? There is no absolute way to avoid cancer because it is a complex disease which has, in my opinion, far more than one cause, of which life style and diet is only a part.
The other problem is the vested interests. Which is more important the health of your customers or the bottom line of the profit column at the end of the year? Sadly it is the latter that matters to the people who make the decisions; after all their bonuses depend on that figure at the bottom of the profit column, well it did at one time; now I am not so sure as they seem to get huge bonuses for failure as well these days. Food should be about nutrition and not about how long it can stay on the shelf, or how cheaply it can be made for the maximum profit, or how many artificial ingredients you can stuff into it to make it look better, taste better, last better. The trouble is that we are lead to believe that processed food is convenient and healthy because of all the nutritional information on the packaging, and surely companies would not make food that was bad for us, would they? In addition there are a lot of people now who cannot cook, other than opening a packet or a can, reading the instructions and following them so the product turns out the same every time. How many of us really think about what we eat? Until 4 years ago I didn't give it much thought, but now look where I am. Don't make the same mistake. I always thought the idea of your body being your temple was a bit silly, but now I know that it is true. My body may not be the slimmest and fittest temple around, but at least I now think about what I eat and now it can effect the ability of my 'temple' to cope with the disease the doctors said should have killed me by now.
Over a period of time I have begun to really wonder where the money raised actually goes. I contacted Cancer Research UK and asked how much of their research budget did they spend on any form of metastatic, secondary cancer. After all this is the cancer which actually kills most of the patients who die of cancer. Their answer was that they spent £4 million. A lot of money, until you consider that they have a research budget of £400 million a year. So about 1% is spend on researching the types of cancers that kill the most people. This is the primary reason I don't take part any longer.
Why do I feel that charities now waste a lot of money on CEOs who are highly paid, and other paid staff who fund raise, raise awareness of the symptoms, organise the shop, and much more. But how much money has to be raised before there is anything to actually contribute to the cause? While I appreciate that these are full time jobs some of these folks seem to be paid an awful lot of money. Going into the voluntary sector is no longer a vocation but a serious career move.
With breast cancer there is already a lot of information to raise awareness that is freely available, so why are there so many charities doing the same thing, as well as the NHS? Lets face it there are a lot of people out there who won't listen, come what may. And whose fault is that? Now there's a question.
A lot of advice is available about how to try and prevent cancer and about life style and diet that can help prevent the disease, but constantly the media and the vested interests undermine this information. One day potato is good for you, the next it isn't. Is salt good or bad for you, bearing in mind that it is a mineral that we all need to survive, and what about fats? Not all fats are created equal, though all are needed but in the right ratio, so which one is good and which is bad; this week. It is all treated as a good source for a story and a few emotive headlines. After all smoking was considered to be healthy at one time, and even when the truth was known the vested interests ignored this information so their profit margins were not affected. Smokers also ignore the information scientific evidence that tobacco caused cancer, but then we all thought this wouldn't happen to us, didn't we? There is no absolute way to avoid cancer because it is a complex disease which has, in my opinion, far more than one cause, of which life style and diet is only a part.
The other problem is the vested interests. Which is more important the health of your customers or the bottom line of the profit column at the end of the year? Sadly it is the latter that matters to the people who make the decisions; after all their bonuses depend on that figure at the bottom of the profit column, well it did at one time; now I am not so sure as they seem to get huge bonuses for failure as well these days. Food should be about nutrition and not about how long it can stay on the shelf, or how cheaply it can be made for the maximum profit, or how many artificial ingredients you can stuff into it to make it look better, taste better, last better. The trouble is that we are lead to believe that processed food is convenient and healthy because of all the nutritional information on the packaging, and surely companies would not make food that was bad for us, would they? In addition there are a lot of people now who cannot cook, other than opening a packet or a can, reading the instructions and following them so the product turns out the same every time. How many of us really think about what we eat? Until 4 years ago I didn't give it much thought, but now look where I am. Don't make the same mistake. I always thought the idea of your body being your temple was a bit silly, but now I know that it is true. My body may not be the slimmest and fittest temple around, but at least I now think about what I eat and now it can effect the ability of my 'temple' to cope with the disease the doctors said should have killed me by now.
Saturday 16 June 2012
Job interview
I was not really looking forward to it as I don't think I do well in interviews, but then again I haven't had many as I have worked in the same place for so long. The whole process is a bit daft really as I think they have already decided who they do, or do not, want and the idea that they have to give us priority for these jobs is rubbish.
In the end I think that it went quite well, although I was getting very nervous just before especially as they were running late which somehow makes waiting seem longer. I managed to keep myself calm and reminded myself that I could only do my best at that particular time, and just be myself. It is always the waiting that is the worst; that feeling as though you should just run away from the whole thing and hide somewhere. Anyway I will find out on Thursday how it has gone and whether I got the job. I must say that I feel rather neutral about the whole thing now. It is over and done with and I don't think I will be too upset if the answer is no. It is quite difficult to get much enthusiasm about the whole thing as it will all be very different in the new academic year and a lot of it seems to be a matter of trial and error. Pretty sure that we minnions will get the blame if it doesn't work out ok as management always seems to slide out of the firing line.
It is really just a shame that our little attendance team is just being dismantled and thrown away as though we are useless. I really don't think that management has much of an idea what we do. We have been administering a couple of student allowances, Education Maintenance Allowance (EMA) for 16 - 18 year olds, and the Adult Learning Grant (ALG) for 19+ students and the government have now decided to abolish them. The administration of the EMA and ALG have always, and wrongly in my opinion, overshadowed the Attendance part of the job so that the powers that be seem to think we will not have much to do next year. In reality the EMA and ALG only take up a small part of what we do. But the decision has been made and there is nothing we can do about it now. They say there will be new attendance tracking systems next year, but those of us in attendance know nothing about them so I have no idea how good they will be...time will tell.
I actually wore some 'high' heeled shoes for the interview yesterday. That is high to me, all one inch of them! I got them for Vicky's wedding a month ago and thought that I ought to make a bit of an effort and dress a bit more smartly than normal. Anyway all my other shoes are really ragged and I didn't know whether the panel would be able to see them during the interview as the only clonkers might give a bad impression. I wasn't going to go over the top and wear a suit mainly because I don't have one, or anything else that could really be remotely thought of as power dressy. When I wore the new shoes of the wedding I was really stiff and found walking difficult the next day, but this time I have adjusted a bit better, partly because I consciously made myself keep my feet in a better position. I usually wear special insoles, but the new shoes aren't big enought to take them, at least until I have worn them in well!
In the end I think that it went quite well, although I was getting very nervous just before especially as they were running late which somehow makes waiting seem longer. I managed to keep myself calm and reminded myself that I could only do my best at that particular time, and just be myself. It is always the waiting that is the worst; that feeling as though you should just run away from the whole thing and hide somewhere. Anyway I will find out on Thursday how it has gone and whether I got the job. I must say that I feel rather neutral about the whole thing now. It is over and done with and I don't think I will be too upset if the answer is no. It is quite difficult to get much enthusiasm about the whole thing as it will all be very different in the new academic year and a lot of it seems to be a matter of trial and error. Pretty sure that we minnions will get the blame if it doesn't work out ok as management always seems to slide out of the firing line.
It is really just a shame that our little attendance team is just being dismantled and thrown away as though we are useless. I really don't think that management has much of an idea what we do. We have been administering a couple of student allowances, Education Maintenance Allowance (EMA) for 16 - 18 year olds, and the Adult Learning Grant (ALG) for 19+ students and the government have now decided to abolish them. The administration of the EMA and ALG have always, and wrongly in my opinion, overshadowed the Attendance part of the job so that the powers that be seem to think we will not have much to do next year. In reality the EMA and ALG only take up a small part of what we do. But the decision has been made and there is nothing we can do about it now. They say there will be new attendance tracking systems next year, but those of us in attendance know nothing about them so I have no idea how good they will be...time will tell.
I actually wore some 'high' heeled shoes for the interview yesterday. That is high to me, all one inch of them! I got them for Vicky's wedding a month ago and thought that I ought to make a bit of an effort and dress a bit more smartly than normal. Anyway all my other shoes are really ragged and I didn't know whether the panel would be able to see them during the interview as the only clonkers might give a bad impression. I wasn't going to go over the top and wear a suit mainly because I don't have one, or anything else that could really be remotely thought of as power dressy. When I wore the new shoes of the wedding I was really stiff and found walking difficult the next day, but this time I have adjusted a bit better, partly because I consciously made myself keep my feet in a better position. I usually wear special insoles, but the new shoes aren't big enought to take them, at least until I have worn them in well!
Wednesday 13 June 2012
Kidney scan today
When I eventually got home last night (reflexology after work - bliss) I found an answerphone message from nuclear medicine at the hospital, saying they had booked me in for a scan on my kidney at 9.30 this morning (13 June 2012). That left me with a bit of a problem as today I was due to have my admin test for my job application...so I went into work this morning before 8am and checked up with the hospital whether this was still in place, as I had not been able to confirm that I could attend. I also needed to find out if I needed to fast etc - just drink lots of water. It is confusing that different scans have different preparation, and as I hadn't got the information to hand I though I ought to check. Not much point in turning up for the scan only to be sent away for doing the wrong thing.
The nurse who did the radio-active injection was so gentle that I couldn't even tell she had put the needle in, and in spite of the fact that she needed two attempts. I am so used to the 'sharp scratch' and hunting for the vein which has decided not to play nicely, that I am not used to such a gentle approach. Scan was ok, though I have to say that lying on that god forsaken bench has upset my left hip, which has been doing very well since acupuncture last week. Grrrr.
I should get the results when I have my regular chemo clinic appointment on 26 June, so I can only hope that the results will be on the more positive side.
Rolled into college at 11.30, in plenty of time for the admin test in the afternoon. Can't say it went too well as I had a mental blank about how to do a mail merge. I had some training on it a couple of years ago, but I haven't used it since. Some of the other ladies doing the test use it all the time, so they would have been ok. I only had to do the one test for my post, but some of the ladies had about two and a half hours of tests to do; and the tests were not the same as we had been lead to believe they would be. Those who did the Excel part had to do formulas, although we had been told that there would be none; and none of us had to do an internet search, though we were all supposed to do that. The powers that be really have no idea what they are doing...now why was it that I didn't take voluntary redundancy again?
The nurse who did the radio-active injection was so gentle that I couldn't even tell she had put the needle in, and in spite of the fact that she needed two attempts. I am so used to the 'sharp scratch' and hunting for the vein which has decided not to play nicely, that I am not used to such a gentle approach. Scan was ok, though I have to say that lying on that god forsaken bench has upset my left hip, which has been doing very well since acupuncture last week. Grrrr.
I should get the results when I have my regular chemo clinic appointment on 26 June, so I can only hope that the results will be on the more positive side.
Rolled into college at 11.30, in plenty of time for the admin test in the afternoon. Can't say it went too well as I had a mental blank about how to do a mail merge. I had some training on it a couple of years ago, but I haven't used it since. Some of the other ladies doing the test use it all the time, so they would have been ok. I only had to do the one test for my post, but some of the ladies had about two and a half hours of tests to do; and the tests were not the same as we had been lead to believe they would be. Those who did the Excel part had to do formulas, although we had been told that there would be none; and none of us had to do an internet search, though we were all supposed to do that. The powers that be really have no idea what they are doing...now why was it that I didn't take voluntary redundancy again?
Tuesday 12 June 2012
Hi ho, hi ho and back to work I go
Well I managed to survive my first day back at work after my recent 'blip' and it was quite nice to be back. I got there early to find that, as usual, everyone else had used up my stash of paper, envelopes etc so I had to go to reprographics to replenish my stocks. I was starting to get really annoyed about it all, then just thought 'why bother'? Not worth allowing yourself to get wound up about it, it's just the same old thing. Had a nice chat with Trish while I was in repro, and when I got home this evening there was a card from her saying she missed me.
I was told that I have an interview for the Attendance Advisor post which will be on Friday, with an admin test tomorrow. I think I am the only person who has applied for these two posts so I might get it, but I'm not overly worried if I don't. They may have decided to wipe the slate completely clean when it comes to attendance, so I could still be made redundant. Again, I am just going with the flow.
In some ways it felt as though I had never been away, though I did have a sticky few moments wondering if I had done the letters correctly. Mental block really, but it is a bit like riding a bike and I was soon peddling away with confidence. I have to say that it was rather nice to spend a day with people because when I am not at work I don't do that very often. It was also rather nice to see that my colleagues were glad to have me back. I can be do grouchy some times that I tend to think that everyone hates me but most of the time I can pass for a person rather than a troll - on a good day.
Now I just have to try and get back into some sort of a routine and to that end I have decided to move my soya milk making to the end of the day, rather than in the morning. That way I will have fresh milk for my smoothie in the morning and a hot drink at night to lull me to sleep. I have to get back into the routine of taking a lunch in with me which is usually a big fresh salad with hummous or canned salmon, tuna or chick peas. A cold lunch is the easiest as I don't like to microwave food, and I don't have to worry about trying to keep it warm if I get distracted from the task of eating. I have been trying to make sure that I leave my desk at lunch time and go to the staff room with colleagues for a chat, rather than eating while working through my lunch break. Not good for the digestion.
So tomorrow is another day at the grindstone :o)
I was told that I have an interview for the Attendance Advisor post which will be on Friday, with an admin test tomorrow. I think I am the only person who has applied for these two posts so I might get it, but I'm not overly worried if I don't. They may have decided to wipe the slate completely clean when it comes to attendance, so I could still be made redundant. Again, I am just going with the flow.
In some ways it felt as though I had never been away, though I did have a sticky few moments wondering if I had done the letters correctly. Mental block really, but it is a bit like riding a bike and I was soon peddling away with confidence. I have to say that it was rather nice to spend a day with people because when I am not at work I don't do that very often. It was also rather nice to see that my colleagues were glad to have me back. I can be do grouchy some times that I tend to think that everyone hates me but most of the time I can pass for a person rather than a troll - on a good day.
Now I just have to try and get back into some sort of a routine and to that end I have decided to move my soya milk making to the end of the day, rather than in the morning. That way I will have fresh milk for my smoothie in the morning and a hot drink at night to lull me to sleep. I have to get back into the routine of taking a lunch in with me which is usually a big fresh salad with hummous or canned salmon, tuna or chick peas. A cold lunch is the easiest as I don't like to microwave food, and I don't have to worry about trying to keep it warm if I get distracted from the task of eating. I have been trying to make sure that I leave my desk at lunch time and go to the staff room with colleagues for a chat, rather than eating while working through my lunch break. Not good for the digestion.
So tomorrow is another day at the grindstone :o)
Monday 11 June 2012
I have gone with the application...and going back to work
After a lot of thought I have decided to go ahead with the application for the Attendance Advisor post. I have done this for social reasons, rather than any dedication to my employer. I have been off work with depression for a few weeks (though I wouldn't have been at work anyway last week as it was half term) and I have decided that it is time I got off my sorry posterior and got on with things.
I have contacted the college today and they have agreed that I can return to work tomorrow. Usually they insist that I have to produce a fit for work form from my GP, but I mentioned that I was told by an advisor that I can return when I feel up to it. No more comments from the HR (human remains) department about getting medical clearance.
I don't have a lot of contact with people when I am not at work (excuse me, kettle boiling) ... and living on my own does not help. As with my approach to living with cancer I just have to allow myself some down time and then pick myself up, dust myself off and get on with it. Being on my own I am not high on the list of priorities for others, even my brother and family who live locally. That is really the way it should be, but there are times when I just need others to communicate with so I can break the cycle of bad thought patterns. It doesn't need to be a deep conversation, just something to refocus my mind at the right time. I feel that if I contact friends or family that I will become a nuisance and they will then want to have less to do with me than they do now. Also I am an adult and I should be able to get on with things and behave like a responsible adult, sometimes.
I have never quite been sure whether this journey is easier for those of us on our own, or for those with immediate family. If you have people directly in your life it is easier to maintain motivation for living (which is something that I lack at times) and you have others to consider, do things for and with, and interact with. That is something that I only have at work. One the down side it must be difficult to have to maintain a sense of normality when things aren't going well, and knowing what an immediate impact those times have on others. There again, there is no perfect way of living your life whether or not you have cancer, or whether or not you have others in your immediate life. I know from my own experience of being a carer for others that it can be difficult to accept the ill health of another. There are times when we all wish we could just be normal again; but there again, what is normal?
I grew up with a father who had emphysema and who died a couple of weeks after my 18th birthday. This experience at least gave me a basic understanding that living with a chronic illness is still living. Just because someone has a life-limiting disease does not mean that they cease to be a person, and a person who has to be treated differently. Maybe that is why so many of us feel that it is difficult to talk about having a chronic illness as others tend to change the subject / not want to have to deal with it at all and you never see them again / or feel that you need to be treated differently. It is like shouting at someone who is hard of hearing, or actually deaf. Turning up the volume at which you speak is not necessarily going to allow them to understand what you are saying, whereas projecting your voice and speaking clearly may get the message over. It is a different technique to achieve the same ends. Having a chronic illness is a constant condition of the body, but it does not have to be a constant condition of the mind. Mind over matter? Not sure it is anywhere near that simple, but even with a chronic illness you are still living, so life does go on; and as I said before, what exactly is normal?
I have contacted the college today and they have agreed that I can return to work tomorrow. Usually they insist that I have to produce a fit for work form from my GP, but I mentioned that I was told by an advisor that I can return when I feel up to it. No more comments from the HR (human remains) department about getting medical clearance.
I don't have a lot of contact with people when I am not at work (excuse me, kettle boiling) ... and living on my own does not help. As with my approach to living with cancer I just have to allow myself some down time and then pick myself up, dust myself off and get on with it. Being on my own I am not high on the list of priorities for others, even my brother and family who live locally. That is really the way it should be, but there are times when I just need others to communicate with so I can break the cycle of bad thought patterns. It doesn't need to be a deep conversation, just something to refocus my mind at the right time. I feel that if I contact friends or family that I will become a nuisance and they will then want to have less to do with me than they do now. Also I am an adult and I should be able to get on with things and behave like a responsible adult, sometimes.
I have never quite been sure whether this journey is easier for those of us on our own, or for those with immediate family. If you have people directly in your life it is easier to maintain motivation for living (which is something that I lack at times) and you have others to consider, do things for and with, and interact with. That is something that I only have at work. One the down side it must be difficult to have to maintain a sense of normality when things aren't going well, and knowing what an immediate impact those times have on others. There again, there is no perfect way of living your life whether or not you have cancer, or whether or not you have others in your immediate life. I know from my own experience of being a carer for others that it can be difficult to accept the ill health of another. There are times when we all wish we could just be normal again; but there again, what is normal?
I grew up with a father who had emphysema and who died a couple of weeks after my 18th birthday. This experience at least gave me a basic understanding that living with a chronic illness is still living. Just because someone has a life-limiting disease does not mean that they cease to be a person, and a person who has to be treated differently. Maybe that is why so many of us feel that it is difficult to talk about having a chronic illness as others tend to change the subject / not want to have to deal with it at all and you never see them again / or feel that you need to be treated differently. It is like shouting at someone who is hard of hearing, or actually deaf. Turning up the volume at which you speak is not necessarily going to allow them to understand what you are saying, whereas projecting your voice and speaking clearly may get the message over. It is a different technique to achieve the same ends. Having a chronic illness is a constant condition of the body, but it does not have to be a constant condition of the mind. Mind over matter? Not sure it is anywhere near that simple, but even with a chronic illness you are still living, so life does go on; and as I said before, what exactly is normal?
Sunday 10 June 2012
Decisions, decisions, decisions
Visited my aunt over the holiday weekend and went to the English Music Festival in the Abbey at Dorchester on Thames, and watched some of the Diamond Jubilee events. I got home on Monday to find a letter from my employer about the end of the consultation period for the reorganisation of my area of the support staff administrators.
Now I have to make a decision about whether to apply for one of the new jobs, or take voluntary redundancy. If I don't get one of the jobs I will then be made redundant anyway ... so do I jump? Or do I wait to get pushed? Some of the suggestions put by us in an alternative bid were taken up and put into the final recommendation, but I am still not convinced that they are enough to make me apply for one of the new jobs. I have just e-mailed off my application for the post of Attendance Advisor, which is basically what I do at the moment, but a third less hours and therefore a third less pay as well as stupid working hours. Not convinced that redundancy is not my best option but at least the application has been logged. It is now about 10 past midnight on 11 June 2012, and a decision about voluntary redundancy has to be made by 11am, and job applications put in by 4pm. At least the application is in...now to sleep on the decision of whether to go for the voluntary redundancy or leave it as it is at the moment.
The thing is...as I have no definate answer about the possible progression of my cancer do I waste time applying for a job that I may not be able to do in a few months time. Also my middle manager at work has commented about the amount of time I have had off this year, so are they really going to seriously consider my application for this new post?
Just leave it Victoria and go to bed and get some sleep............
Now I have to make a decision about whether to apply for one of the new jobs, or take voluntary redundancy. If I don't get one of the jobs I will then be made redundant anyway ... so do I jump? Or do I wait to get pushed? Some of the suggestions put by us in an alternative bid were taken up and put into the final recommendation, but I am still not convinced that they are enough to make me apply for one of the new jobs. I have just e-mailed off my application for the post of Attendance Advisor, which is basically what I do at the moment, but a third less hours and therefore a third less pay as well as stupid working hours. Not convinced that redundancy is not my best option but at least the application has been logged. It is now about 10 past midnight on 11 June 2012, and a decision about voluntary redundancy has to be made by 11am, and job applications put in by 4pm. At least the application is in...now to sleep on the decision of whether to go for the voluntary redundancy or leave it as it is at the moment.
The thing is...as I have no definate answer about the possible progression of my cancer do I waste time applying for a job that I may not be able to do in a few months time. Also my middle manager at work has commented about the amount of time I have had off this year, so are they really going to seriously consider my application for this new post?
Just leave it Victoria and go to bed and get some sleep............
Saturday 9 June 2012
Mood swings - the good, the bad and the ugly
One thing about being diagnosed with incurable cancer is that it puts a microscope on you emotions. At first it is like being on a roller coaster, and one which seems to be going down in the dark with no end in sight, and very little going up into the day light to a safe place where you can rest and catch your breath for a while. No matter how much any of us try we will never get off this ride, but with a bit of practice I have reached times when it is a bit more like the revolving tea cups where you can control how much the cup spins even though it is still going round and round.
There are those who say you have to be 'POSITIVE' (in capital letters, rather than shouting) all the time, as though one negative thought will make the cancer grow out of control and destroy any good in anything else you may have done that day. If this is the approach that gets you through the day, then fine; but to me it seems to be a bit punative. It is a bit like thinking you have to stick to the anti-cancer diet of your choice absolutely, and if you eat anything that you know you shouldn't be eating then everything will be negated. Really it is all about doing the best that you can in any particular moment.
One thing I have learned over the years of having depression in my life is that I need to go with the flow. There are times that I just really need to have a good cry and let out the pent up emotions, hormones, whatever, so I can get some balance back into my life and save what is left of my sanity. It is like a build up of water behind a dam, if you don't allow any release in some sort of a controlled manner you have a disaster in the making. Think Dambusters! When the bomb landed in the right place it caused the dam to be breached, but if it didn't get the right spot the problem would dissipate relatively harmlessly. Some where along the line recently one of those bombs got right up against my wall and blew my mind for a while, but I am getting back to where the bombs aren't hitting that spot and the impact is not causing any cracks. There needs to be release, not collapse; there needs to be some sort of control that can allow my focus to come back to where I want to be.
At the beginning of last year I did a course about Mindfulness Based Stress Reduction that was run as a trail by the hospital where I have my treatment. That taught me a technique of constantly regaining control by being able to bring focus back to my breathing. Just normal breathing, nothing yogic, no deep control, just ordinary breathing while noticing that the air being taken is in cooler than the air as it comes out. This is a microscope focused on my emotions that I am using, not the one I mentioned at the beginning of this post which feels as though it is broadcasting those emotions to the world via a link to a giant screen. My personal microscope allows see that right here and right now I am ok, and my breathing can allow my mind and body to relax and gain control over the here and now.
It is more about having confidence in myself to be able to deal with things, and allowing myself to take time to deal with them. Time is something that I do have, even if my diagnosis is 'incurable'. Infact this moment in time is actually why I still have hope for the future no matter how dimly that hope may seem to be on occassion.
There are those who say you have to be 'POSITIVE' (in capital letters, rather than shouting) all the time, as though one negative thought will make the cancer grow out of control and destroy any good in anything else you may have done that day. If this is the approach that gets you through the day, then fine; but to me it seems to be a bit punative. It is a bit like thinking you have to stick to the anti-cancer diet of your choice absolutely, and if you eat anything that you know you shouldn't be eating then everything will be negated. Really it is all about doing the best that you can in any particular moment.
One thing I have learned over the years of having depression in my life is that I need to go with the flow. There are times that I just really need to have a good cry and let out the pent up emotions, hormones, whatever, so I can get some balance back into my life and save what is left of my sanity. It is like a build up of water behind a dam, if you don't allow any release in some sort of a controlled manner you have a disaster in the making. Think Dambusters! When the bomb landed in the right place it caused the dam to be breached, but if it didn't get the right spot the problem would dissipate relatively harmlessly. Some where along the line recently one of those bombs got right up against my wall and blew my mind for a while, but I am getting back to where the bombs aren't hitting that spot and the impact is not causing any cracks. There needs to be release, not collapse; there needs to be some sort of control that can allow my focus to come back to where I want to be.
At the beginning of last year I did a course about Mindfulness Based Stress Reduction that was run as a trail by the hospital where I have my treatment. That taught me a technique of constantly regaining control by being able to bring focus back to my breathing. Just normal breathing, nothing yogic, no deep control, just ordinary breathing while noticing that the air being taken is in cooler than the air as it comes out. This is a microscope focused on my emotions that I am using, not the one I mentioned at the beginning of this post which feels as though it is broadcasting those emotions to the world via a link to a giant screen. My personal microscope allows see that right here and right now I am ok, and my breathing can allow my mind and body to relax and gain control over the here and now.
It is more about having confidence in myself to be able to deal with things, and allowing myself to take time to deal with them. Time is something that I do have, even if my diagnosis is 'incurable'. Infact this moment in time is actually why I still have hope for the future no matter how dimly that hope may seem to be on occassion.
Monday 4 June 2012
How very British
Trust the weather to be a disaster for the Thames River Pageant yesterday as part of the Queen's Diamond Jubilee celebrations. For those of you who are not familiar with this particular phenomenon it is virtually a tradition that whenever there is a Bank Holiday weekend (public/national holiday) the weather turns nasty. I partially blame my aunt for yesterday because she was complaining the day before that it has been too dry recently (she is a gardening person) and then spent the whole of yesterday complaining that it was raining! Personally I love this about the English weather...the very fact that you can't rely on it at all, is actually the only thing that you can rely on. My niece was so lucky for her wedding on 12 May. Just two days before it had been cold and so wet we were considering whether we could get hold of a boat in time!
But even with the awful weather things still went ahead yesterday, and I think it got to a point where no one really cared anymore, and the rain was almost as much of a star as the sun would have been. I loved the way the new Needle building, which will be the tallest building in Western Europe, started to disappear as the weather got worse and the cloud got lower. I don't like just a little bit of rain on such a day. It has to be soaked to the skin or nothing because you get to the point where wet is best, and much more fun! I loved the London Symphony Orchestra chorus members at the very end doing their Last Night of the Proms bit when they were drenched and couldn't really even hear what the orchestra was playing below. Good on you ladies and gentlemen, just enjoy it!
The newspaper this morning questioned why the Queen and the Duke didn't sit on the 'thrones' on the deck of the royal barge. I would have thought that it was obvious that there was more protection from the cold, wind and driving rain by standing behind them, not sitting on them! The Queen did briefly go below deck, possible to get a slug of something to warm her, as well as the wrap that she emerged with. If ever there was a time to splice the mainbrace!
But even with the awful weather things still went ahead yesterday, and I think it got to a point where no one really cared anymore, and the rain was almost as much of a star as the sun would have been. I loved the way the new Needle building, which will be the tallest building in Western Europe, started to disappear as the weather got worse and the cloud got lower. I don't like just a little bit of rain on such a day. It has to be soaked to the skin or nothing because you get to the point where wet is best, and much more fun! I loved the London Symphony Orchestra chorus members at the very end doing their Last Night of the Proms bit when they were drenched and couldn't really even hear what the orchestra was playing below. Good on you ladies and gentlemen, just enjoy it!
The newspaper this morning questioned why the Queen and the Duke didn't sit on the 'thrones' on the deck of the royal barge. I would have thought that it was obvious that there was more protection from the cold, wind and driving rain by standing behind them, not sitting on them! The Queen did briefly go below deck, possible to get a slug of something to warm her, as well as the wrap that she emerged with. If ever there was a time to splice the mainbrace!
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