1 in 5 cancer trials fail to complete

http://www.cancernetwork.com/asco-2014-genitourinary-cancers-symposium/one-fifth-cancer-clinical-trials-fail-complete?GUID=A1E7C055-6042-44DA-8269-BFF034C741FF&rememberme=1&ts=07022014

I came across this in a newsletter I subscribe to by e-mail. It is staggering that 20% of cancer clinical trials fail to complete, and only 1% of those is due to the efficacy of the drug or some other adverse event. When I think how difficult it seems to be to get a trial up and running this scale of failure is … appalling. What a waste of time, effort and money; even though one reason for a trial to fail to complete is because funding is withdrawn.

Why is this happening? Is there some sort of lack of planning that is causing this? When you think how many people are hoping for a treatment, or a cure, for their form of cancer it is heart breaking to find out that there is such a high rate of failure. It is even more so when you take into account that it seems that quite a few trials don’t have a really sound basis and would seem to be pitting the full efficacy of a new drug against low doses of the present standard treatment. Just watch this to hear about some of the things that the drug companies allegedly get up to. http://www.youtube.com/watch?v=ZqKY6Gr6D3Q

Trials should focus on the benefit to the patient and be done with this in mind, and not the benefit to the drug company if they can get it approved. It should be an honest comparison between similar drugs so that the one which is genuinely better becomes clear in the results. We need HOPE that in the future there will be more choices and treatment options, not just tantalizing headlines about new breakthroughs which never go anywhere.

I wish I had breast cancer – advert by Pancreatic Cancer Action in the UK

Evidently an ad campaign has been running on UK commercial TV which has a pancreatic cancer patient saying she wished she had breast cancer. http://www.youtube.com/watch?v=IDU1XEAWkxE&feature=youtu.be

I do understand the message, and I do understand the lack of funding for pancreatic cancer research but there are also frustrations for those of us with Metastatic Breast Cancer who have to see that only about 3% of breast cancer research funding is directly targeted at MBC and 97% to early stage breast cancer.

I do understand the low survival rates for pancreatic cancer, my brother died from it. But the real point here is that billions are directed at cancer research, yet why is so little directed at finding cures and treatments for Advanced and Metastatic cancers? Why does so much of the funding seem to be sent on repeating the same research over and over again, and/or finding new breakthroughs in the metastatic process which then seem to disappear without any further sightings.

The question should be ‘who controls the research funding and who decides what it should be spent on’. It would seem to me that a treatment going into a trial is partially an excuse to throw money around on headed notepaper, give away pens and all the other freebies associated with it. Oh, but it is only a small amount, they may say, but add it all up … More and more charities want the public to give money to their cause but what is the return on that money? Knowing that you have paid the Chief Executive’s six figure salary? You’ve paid for all those things that come through the post with, or without, the free pen etc. to bribe you into thinking that you should do something in return for the pen. How much is being spent on trying to get donations, and how effect are these campaigns in reality?

What we need is an independent organisation who will oversee research so the same things are not endlessly repeated. An organisation which will make sure that research funding is spent where it is needed most and focus on the things with the greatest need and not just the highest profile. The trouble is that it is like anything else cute and sexy sells. Pandas get lots of attention and column inches but there are other species that are even more threatened, but are not as cute and sexy. Boobs sell, pancreases don’t.

Having had a look at the Pancreatic Cancer Action website I was really pleased to see that there is some good education for the medical profession. One thing they could do more of is listening to patients about their symptoms. The doctor in the video points out that it used to be thought that women with Ovarian cancer had no symptoms, which they see as being the case with pancreatic cancer at the moment. However further research has shown that there are symptoms for Ovarian Cancer and hopefully in the future there will be recognised early symptoms for pancreatic cancer. How often are patients asked what their symptoms were? For instance I had a weird smelling arm pit on the side where my breast cancer originated. I’ve never heard of this as being a symptom as a lump would be, but it was something I noticed for quite a while before diagnosis … but there again no one has ever asked me what symptoms I noticed that could be related to the cancer. Why not? We don’t all fit in the same little boxes. Are there symptoms for pancreatic cancer which are being ignored because no one ever bothered to as the patients what they had noticed.

What we all want is genuine progress to be made against cancer. This does not mean company profits, career path glory or what ‘sells’. It means that the patient is taken seriously, is listened to, and research is targeted. At the moment these are just wishes and dreams and not facts and figures.

http://pancreaticcanceraction.org/community/blog/official-statement-advert/#comment-207917

Scans … how do you pass the time?

I always take a book with me whenever I go anywhere near a hospital. In fact I now carry a book almost all the time so that if I stop for a drink or something to eat I can read a chapter or two. The book has even come in handy when I have been stuck in a traffic jam which wasn’t moving, but on scan days it is essential.

Today I had a bone scan. For those of you who are not familiar with this type of scan the patient has an injection of some radio active isotopes and then has to wait two hours before the scan. This allow the isotopes to settle in the areas where there is some damage to the bone. The scan itself takes about half an hour of a camera slowly going over your whole body to get a picture of what is going on. During the scan itself, which goes from the head to the feet, I usually like to do some meditation and a body scan starting at the feet and going up the body.

A lot of people seem to want to know the results as soon as possible, but I am content to wait until my next appointment with an oncologist, which is my case will be in about a month’s time. I take the point of view that if there was something really urgent they will contact me. If there is some progression which is not deemed to need to be dealt with urgently then it can wait and they should have a treatment programme ready for my consideration when I get the not-so-good news. My oncologist did phone once with the results a few days later and I almost had heart failure until he said that everything was stable. It was like the time when I was called in to see the consultant when I was expecting to see one of the Registrars … OMG, why does he want to speak to me? Heart pounding, sense of panic, cold sweat.

I also take the point of view that there is nothing I can do to change the results, so why worry about them too much. That is not to say that I don’t find myself getting increasingly touchy as the day of the appointment arrives, but I don’t want to waste the days. I won’t get those days back, and even if there is something wrong and there is some progression they are not likely to have a treatment plan to put into place instantly; or should I say that I would prefer that they take a bit of time to think of a plan which is best suited to the new problem.

To deal with what is called, in the trade, Scanxiety I will be trying to focus my mind on things that I want to do and which give me joy. I have recently got a machine to convert my LPs to MP3s, or to put onto CD. I will get a chance to go through albums that I haven’t listed to for … years. I actually can’t remember when I last had a turntable to be able to play them. Then they will become a part of my house clearance ‘stuff for the dump’. There may be some that I don’t even want to bother to listen to again, and which I will wonder why I ever bothered to keep them in the first place. I feel a ‘to-do’ list coming on …

Cancer support = survivor???

Why is cancer support only about being a survivor? I recently contacted a local cancer trust to enquire about retreats that they now run not far from where I live. Regrettably I do not feel that I would be welcome at the retreat because the focus will be life ‘after’ cancer because they expect those taking part to be four to six months post treatment. For me, barring a miracle, there is only death after cancer. The whole ‘survivor’ industry that has grown up around cancer in any form, but most oppressively with breast cancer, excludes those that should be the focus. Money is raised on the grounds of the number of people who die of cancer and yet 97% of the research funding for breast cancer goes to early stage breast cancer and 3% to Metastatic Breast Cancer.

I live in a Twilight Zone. It is the space between being a survivor and being at the end of life. The only place I can get support is from my local Hospice. Over the last few months they have really made me feel as though I am fully supported, physically, medically and psychologically, but there doesn’t seem to be anywhere else to go. The Hospice movement is wrongly thought of as being solely about the end of life, but in reality it is there to enhance the life of a person with a life threatening disease (and not just cancer), but naturally those most at need are those at the end of life who require the most intense support and I know that their immediate support for me can only be temporary. The Twilight Zone is also the space between being able to work fully and live a relatively normal life. It is the space between being able to earn a living and have a fulfilling life, and where work becomes such a negative and so draining that it is ruining my Quality Of Life … that all important aspect of living with incurable cancer.

In the UK changes to the rules about disability benefits mean that many can’t access this support, and if we do we are made to feel guilty, and a drain on the economy. We are an easy target. High profile cases of people claiming the full Disability Living Allowance have got a lot of coverage in the media because some of those in receipt have been found to be well enough to referee a football match etc. or run a marathon. It has been made to seem that anyone who tries to claim this allowance is a scrounger. The likelihood that I will get to retire on my state pension is astronomically small because I will have to wait at least another 13 years. Even so, at the rate things are going, the retirement age may have been raised again for the state pension. I don’t want to be a drain on anyone; I don’t want to be a burden. But support is interpreted as being all about survivorship. It is all about life after treatment. I feel as though I have gone to the ‘dark side’ of the Twilight Zone; into the Land Of The Living Dead. Is it wrong for us to expect some support and understanding to help us maintain a worthwhile Quality Of Life for as long as possible? Those who face the possibility of life after treatment can get support, but what about those who face death after treatment? We should just keep quiet and not upset the survivors with the reality that where we go, they may follow.

The Perfect Diet for your Soul

I guess this is what I have been searching for of late. This is nothing to do with food or nutrition, but what feeds your soul and brings joy to your life. What brings meaning to your life. I have struggled with this for many years, and especially since my diagnosis of Metastatic Breast Cancer. In the six years that I have lived with this many friends have died who had so much more to live for – spouse, children, grandbabies… I feel ‘survivor guilt’ that I am still here, while they are not. I can’t change this and so I have to let them go free and get on with my own existence.

I have had depression since I was 14 years old, and for most of that time it was not treated in any way. No therapy. No medication. Just the ability to keep plodding on in life with the vague hope that things would get better. That ain’t gonna happen now, so I have to find the Perfect Diet for my Soul. But where to start.

It is difficult to change the way you think about yourself when it is so ingrained to be negative. Sometimes it works, but then at other times it doesn’t and things start to crash down around myself. I have never thought I was worthy of anything good, and my father told me that I was nothing as a child and I believed all this negativity. Even the idea of going out and enjoying myself for a day is a foreign concept. I did everything as perfectly as possible, but inevitably I failed and I just ended up feeling more of a failure. But was I? Why have I spent my life worrying what others would think, and trying to make them feel that I might be worthy when their opinion doesn’t really matter a damn. I know that I have done everything as well as I could at that time. I know that I have succeeded in the things I have done but my emphasis has been on pleasing others when it should have been on pleasing myself, and that ultimately that is what we should all be doing. It doesn’t matter if you have children or a partner, if you are not doing things to please yourself; if you are not actively searching for the Perfect Diet for your own Soul then how can you truly pass on to others what they need to find their Perfect Diet? Even if they are your family their Perfect Soul Diet might be quite different from yours, though they will join together in places.

I am currently doing an e-course through the Oprah Winfrey Network with Brene Brown called the Gifts of Imperfection. I haven’t really started the art journaling side of it, but I am slowly getting all the things I need together to make a real start on it. Imperfection … or should that read that I’m Perfection, or at least enough for myself.

There is no ‘one size fits all’ solution to living with Metastatic Breast Cancer. Wouldn’t it be great if there was, but there isn’t. With the treatment choices that we make we have to go with what is right for ourselves, and so it is with finding the Perfect Soul Diet. What I like will not suit others. It is a bit like the way we dress, or the things we have in our houses. There is not good or bad taste, just what I want to have around me, and what I want to wear. Of course there are restrictions, and money is one of them, but there again I think I would spend my time worrying much more about something that is valuable rather than something that is just right for me and at a price I could afford. Some things that are a part of my Perfect Soul Diet cost nothing … as the person behind me found out when I was admiring a truly gorgeous sunset last evening when the light had turned to green! I could have stayed there for ages and watched it slowly changing to darkness. The gold of the sun and some of the sky; the grey clouds glowing in front of it; the composition of the trees and the river. I wish I had a camera with me, but there again these are things that get into your soul and can make you glow. They are imprinted on the little grey cells so who needs a camera. The photo would probably disappoint because it can’t replace that catch of the breath on seeing it for the first time.

I am worthy of the presence of joy in my life. I am worthy of spending the time and money to do things that I enjoy. There are new experiences that can fill my heart and soul. I can still make a contribution to the world, even if it is just feeding the birds that come into my garden. Making a difference doesn’t have to be earth shatteringly important, I just need to start some ripples in my soul and watch them spread outwards.

Hippy 6th Birthday

It was 6 years ago today that my right hip was replaced because of a pathological fracture caused by a large metastatic tumour which was about to cause my hip to collapse. If it had collapsed it would have been much more difficult to mend it and get me back on my feet. Somehow I seem to have leapt from a second anniversary pretty quickly to it being 6 years. At the time I was told that I had 6 months, possibly a year to live.

Where do the years go in your life in general. I remember asking my mother when she was about 60, how old she felt and she said about 18. I thought it couldn’t really be true, but in many ways we spend so long looking forward to being an adult, and getting out of our teens that the next few years just seem to go by without notice. What happened to my 30’s for instance? Next month I will be 54 – well and truly middle aged, and I am starting to move along the ago groups that appear in some questionnaires. How old do I feel … stuck somewhere between 18 and 92, depending on the day!

At the moment I feel a bit as though I am in a whirlwind of making alterations to my life. I am trying to de-clutter the house, adapt the bathroom to a shower room and maybe add facilities to the down stairs so I can move down there eventually and have everything on one level. Maybe I should have bought a bungalow, but the problem with them in this area is that they all have large gardens, and I struggled with what I have at the moment until I found a chap who could do it for me. It sounds so posh having a gardener. But my house does give the option that if I do move downstairs there is almost a self contained flat upstairs for someone else to use.

Possibly the biggest change is the possibility of being retired from my work on the grounds of ill-health. Work has become a bigger and bigger negative for me since I had to have a change of job role about 18 months ago. Since October I have been unable to go to work because they wanted to move me from the office I was in, into a larger office in the main student services area with the only alternative being what used to be a store cupboard – no natural light, no windows, no air -yuk. It may sound petty, but I had been hanging on by the fingernails trying to do my work and that of a colleague who had already gone off sick, and that was the straw that broke the camel’s back. I don’t want to be seen when I am struggling to stay awake, when I am in pain to the point where I have to take more pain killers. The chair that has already been fitted to me has been changed and moved so much it no longer provides support because whoever else sits in it changes it. How long do I have left … months, years? Do I want to live giving 90% of my energy to a job that couldn’t give a damn that I exist? Until the most recent unfit to work form signed me off indefinitely they hadn’t taken much notice, suddenly it is full steam ahead with getting medical reports and it all feels as though they are pushing me out. There again, in some ways I am willing to be pushed. Existing to go to a horrible job and being too tired to do very much is not much of a life.

I have been getting in touch with my more creative side and de-cluttering at the same time by making cards and using up some of my stash. Now what to do with them all. After two weeks in the local hospice with depression just before Christmas I now attend their Day Hospice once a week and we do a craft in the afternoon. I am trying to start journaling and doing other things that can be creative and rewarding, whilst giving me a way to express myself and feel as though I still have something to offer.

The question is then, what do I do with my life? How long do I have … oh sod it, I just want to get on with what is left of my life and see where it takes me. Cancer has already taken enough so get behind me Satan!

Hippy birthday …

Journaling Imperfection

For about 35 years I kept a daily diary, just what I did that day and the entries were not long. I started out in 5 year diaries and then moved on to whatever I could get for the present year. I stopped about 3 years ago because it just seemed to be a waste of time because my life was so boring.

While I was in Oakhaven before Christmas the Day Hospice organiser brought me down a book to start journaling in, but this is different from just writing a daily account of what I did, and maybe some thoughts and feelings. There are no rules and the subject doesn’t have to be me, just a though that inspires me to do something; just something that pops into my mind. My room in Oakhaven had doors which can open out into the gardens. One morning I was eating my porridge for breakfast and a small bird suddenly popped down by the door and disappeared. I thought it was too small for a Robin (and no red breast) … what was it … a Wren? When he hopped into view again it was indeed a Wren. That was the subject for my first journaling subject.

There is an e-course which has just started on the Oprah Winfrey Network which is about art journaling and is called The Gifts of Imperfection and is by Brene Brown. I have signed up to do this one, and the one that follows on at the end of March. The heart of the course is the concept that I am imperfect, but I am enough. Perfection is an aspiration that few will attain, and I doubt that many who are considered to be perfect do not feel that way about themselves. What actually is perfection? Why do we feel the need to be perfect, and perfect in so many aspects of our life. The way we look, what we wear, how we do something, the way the house looks … we are programmed to achieve, but is achieving something also the achievement of perfection? Why can’t I just be ‘enough’. My house is a home and not a showpiece for a magazine. It is where I live and not just where I exist for the judgement of others. For that matter how many people’s opinion really matters that much to me; so why do I try to please people who don’t matter.

I am not exactly sure what I want to get from this course, but I hope it might bring to the front of my mind some of the truths that I know deep in my being to be true about myself, but which I find difficult to accept. One of them is that I AM enough.

Sleep – I remember it well

One thing that I have struggled with over the last few months is the inability to sleep, or sleeping about 12 hours a day. Both problems come in cycles, with weeks of sleeping about 6 hours a day, or sleeping for about 12 hours. Both can be a problem.

With sleeping about 6 hours, note that I say a day. My sleep is very disturbed, with a run of two hours being good. I have ended up reading a book or playing word search on my tablet which means that the page is back lit so I don’t have to put the lights on. If I then thought that sleep wasn’t likely to come back I then get out of bed and sit and read, listen to music etc.

With sleeping 12 hours a day, or more, there is the problem of actually being able to wake up at the end. Even when I know that I cannot sleep any more because my mind has ‘connected’ I am still yawning and sleepy. This is the mode that I am in as I write this, and for about the last 5 nights. Recently the intervention of pain has not helped either scenario. This morning I was interested to read about this on a health newsletter which I subscribe to by email.

http://www.sciencedaily.com/releases/2014/01/140110130952.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Ftop_news%2Ftop_health+%28ScienceDaily%3A+Top+News+–+Top+Health%29

The CBT approach with which I am familiar is to make sure that you associate your bed with sleep. Therefore I don’t go to bed until I am tired enough, and I don’t stay in bed if I can’t sleep. The latter can be easier said than done when you are in the twilight zone of almost being asleep but still can’t actually get to sleep. However I eventually realise that I am not actually able to get to sleep so I get up and do something else for a while. However a recent increase in pain which doesn’t necessarily respond to painkillers has seen me turning to MBSR to help to control the pain, and also using a heat pad as another way of dealing with it. Strangely I find that if I concentrate on the pain I can get control of it and release it from my body. Both approaches are worth thinking about because there are no medications involved and they help to make me feel as though I have just a bit of control over my situation.

2014 – Happy New Year

I have been quiet of late. Partly because I didn’t have much to say, partly because I have been extremely depressed and partly because the storms and gales across the coast of the south of England resulted in damage to my phone line, and therefore also my internet connection. After two weeks it was finally mended earlier this week, so I have been ploughing my way through hundreds of emails, junk mail and trying to catch up with what has been going on with my contacts on facebook. Not quite sure that I have managed all of it, but I’ve done as much as I can; so if I have missed anything important, my apologies.

2014 has started to sprint away already, unlike the latter part of 2013 which seems to have dragged its sorry posterior all the way to the finishing line. I even stayed up to see it go and watch the New Year fireworks from London on the TV.

I have now been signed off work indefinitely which is such a relief. They decided to move me out of the office where I was pottering along, and hanging on by my fingernails to what is left of my sanity, and to move me into the big main office in the Student Services area. A small and petty thing you might think, but it was the straw that broke this camel’s back and everything started to collapse around me.

Depression has been my constant companion for about 40 years. I had stopped going to school when I was 14 and back in the days of yore, very little was done to help someone in my situation other that to provide a basic level of education from a home tutor who came for two hours a couple of times a week. It wasn’t until I was at University about 10 years ago and beginning to fall to pieces that I had any counselling or support. I was struggling at Uni because I had never had to write an essay before, and I had no idea how to organise my notes etc. I almost gave up because I couldn’t believe that I could do well compared to students who had just left a full school career behind them. I couldn’t even knock on the door of a lecturer’s office to ask for help because I thought they would think that I was stupid. Even when I graduated I couldn’t believe that anyone would want to employ me, other than to do some basic office work, or maybe even to have to go back to cleaning. By then my health had started to break down, and I just knew that I couldn’t go back to cleaning.

I am not sure what this year will hold for me. I will be having repeat scans to see how things are going before going back to see the oncologist in early March. What I do know is that I have to do things for me; and do things because I want to and not because I ought to.

I reached a stage where I just wanted to be dead, because my life seemed to be so pointless. Somewhere, however, I have always clung to the hope that maybe there is a point to my life. I just have to find it.

When Pink works

When Pink does what we all want it to do it is great, but too often it is diluted in the wash by companies that see profit first and foremost. Pink doesn’t need to be washed, Pink can be perfect just as it is. http://blog.dslrf.org/?p=1774

What is needed is for the confidence in Pink to be brought back, and more than that, the integrity of Pink. Back in the day I thought that Pink stood for something that I wanted to be a part of. Something that I thought had meaning. Now? Now you need to check anything Pink to find out if it is the real thing, or just a mirage of Pink in a desert of greed.

Can we revive Pink? Is there hope for the Pink patient? I would like to think so, but it will take a change of attitude for many organisations and companies to truly understand that the whole ethos of the ‘Breast Cancer Industry’ needs to change and be more patient centred. It is results that are needed, and progress – real progress that can be measured in years of life and the reduction in side effects from the various treatments that are available to cancer patients – regardless of the type of cancer that you have.

Pink needs to integrate itself with other colours of the cancer ribbon rainbow; it should not be allowed to be seen as a colour that is superior than any other. Cancer may have different forms, but there should be a much greater exchange of information and the use of techniques to the benefit of all. Cancer, and cancer treatments, are seen as belonging to a particular person, organisation or industry; as a source of career progression and profit.

Cancer is a killer, and Pink is just a colour; and I am just another human being with incurable cancer who would like to have some hope and faith that Pink is not just a beautiful colour, but also an ally and advocate for my well being.

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