Yesterday is history. Tomorrow is a mystery. And today? Today is a gift. That's why we call it the present.
Babatunde Olatunjie
My pension has been finalised. Strange times. I got official notification from East Renfrewshire Council. What can I say? It wasn't very meaningful. It kind of just went a bit like this; thanks for your contribution to education and see ya. Oh well at least they said thanks, that's something. It sums it up really. Its a job, its not my life. I am glad I have my experiences and fond memories but it doesn't really mean much on the grander scheme. I will be easily replaced and that will be that. I will, however not be replaced by those who love me and in particular my daughter. Therefore it is important that I spend the remaining time I have living my life on my terms and I simply could not do that whilst giving so much of myself to a job which frankly sucks the life from you. And so I am embracing my new status, I am loving it. I am retired and free to enjoy many things. For so many their job becomes all consuming and although its a cliché we really do only get one life and there are no guarantees how long that will be. We should take this more seriously and give our jobs the place that they deserve, very much secondary (at a push) to our personal lives, they are what matters. Just another reminder that while I am dealing with a testing life situation, I have also been given the chance to live a fuller live and to focus on living one day at a time, as living in the present is surely the greatest gift.
Tuesday 26 November 2013
If it looks and seems too good to be true...
If it were not for hopes, the heart would break.
Thomas Fuller
I decided to thoroughly research this seemingly breakthrough treatment in the USA. After all I need to be armed with knowledge in order to have any power in my decision making. I think I have always been sceptical of this and hence I have not been particularly pro active about it. I suppose I wanted a little day dream to hang on to and so didn't look into to it too closely, and thus shatter my dream. However, having, in my dark mood the last few days, thought about it again, I decided that I had to be a bit more realistic. I had to face up to whether or not this was worth pursuing and if it meant bursting the bubble then so be it.
I spent quite a while last night researching and yes, as I thought, it just doesn't add up. It would seem (and I cant say this for sure) that it is a bit of a ruse, There is no real medical data available and a lot of the fine detail of this clinical treatment and all that goes with it, is to say the least, less than perfect. Am I surprised? Not in the slightest. We live in a world where cancer robs people of their lives and these people co exist with others who want to get rich, do you see a business plan. People with terminal cancer myself included, often look for hope anywhere that they can. There are people who will provide it at a cost, we have to be careful not to lose sight of this in our bid to live. I haven't lost sight, it is one little house of hope that I have boarded up. It's ok, there are others with the light still shining through the windows and I will inhabit them when the time is right. You will be the first to know which one I visit next.
Thomas Fuller
I decided to thoroughly research this seemingly breakthrough treatment in the USA. After all I need to be armed with knowledge in order to have any power in my decision making. I think I have always been sceptical of this and hence I have not been particularly pro active about it. I suppose I wanted a little day dream to hang on to and so didn't look into to it too closely, and thus shatter my dream. However, having, in my dark mood the last few days, thought about it again, I decided that I had to be a bit more realistic. I had to face up to whether or not this was worth pursuing and if it meant bursting the bubble then so be it.
I spent quite a while last night researching and yes, as I thought, it just doesn't add up. It would seem (and I cant say this for sure) that it is a bit of a ruse, There is no real medical data available and a lot of the fine detail of this clinical treatment and all that goes with it, is to say the least, less than perfect. Am I surprised? Not in the slightest. We live in a world where cancer robs people of their lives and these people co exist with others who want to get rich, do you see a business plan. People with terminal cancer myself included, often look for hope anywhere that they can. There are people who will provide it at a cost, we have to be careful not to lose sight of this in our bid to live. I haven't lost sight, it is one little house of hope that I have boarded up. It's ok, there are others with the light still shining through the windows and I will inhabit them when the time is right. You will be the first to know which one I visit next.
Monday 25 November 2013
Eyes wide open...
You, yourself, as much as anyone in the entire universe, deserve your love and affection
Buddha
After writing about my feelings on Saturday I received a lot of messages from people wishing me well and indeed volunteering to help fundraise. All of this brought a real smile to my face. These are the things that keep me going. Humanity is a wonderful thing and the power of sharing can never be over emphasised. This platform has been my saviour these last few months and the fact that others can gain a little insight about how best to deal with their own healthcare is a great feeling. I was reading an interesting article last week about why people blog in difficult times, especially when grieving. I am grieving, for the life that I have lost and so I could relate to this article. It basically said that it is a way of coming to terms with your situation and in a way it makes it real but manageable. This is all true. For me it is also about sharing and making people more powerful through knowledge.
Another thing I would like to share today is a practical tip for people going through chemo. As we all know the chemo leaves you in a bit of a state on so many levels. Hair loss is a big thing for many. I have already blogged about the whole wig issue, but the other aspect of hair loss is that all of your hair comes out. Now this is great when it comes to throwing away the razors for legs and underarms but not so great when you have no eyebrows or lashes. This has been the worst bit for me, in my first chemo and this one. Eyebrows and lashes are pretty resilient and take a while to come out. As a result for one round of chemo its not so bad. By the time they fall out the regime is almost over, thankfully. I remember when mine did come out that I felt like an alien, I was seriously ill in hospital at the time though so I didn't ponder it for too long. This time as I am on my current chemo indefinitely and am now in month 8 of it the eyebrow/lash loss has been a bit more of an issue. So today I am going to have my eyebrows permanently tattooed. A friend of mine introduced me to a lovely and very qualified girl who is doing it for me. She has a nursing background and this gives me even more faith in her. She is keen to cater for women who like me have lost their hair due to chemo. Obviously this is a procedure that many people get for cosmetic reasons but for some of us it goes a little deeper. I already know some women from clinic who have had it done and it really helps to make us feel better about ourselves in an already difficult time. This is not my most pressing issue (that would be staying alive) but it is one that raises its head. Therefore I am glad to be taking action today. This might be published as a way of letting other women know of what's available to them during chemo, so yes it looks like I am going to be in the newspaper again, this is becoming a habit! For some women it will be irrelevant. for others not, so they have the choice. I know that for some health conditions, this is available on the NHS. Women with alopecia are offered it, but as far as I'm aware it is not readily available to cancer patients. I suppose this makes sense for those going through one treatment, the transient cancer club members, but for others who are living with metastatic cancer who now have chemo regularly it is perhaps something which should be looked at.Again, I think that this is an issue which has been raised but I don't have all of the facts. It is another example of the things that we don't think about but should. Without any doubt how we look is way down the list of what's important and when facing all of the challenges that we do, we end up with more beauty within than we could ever have hoped for, but all of the small details of fighting cancer can end up culminating into a rather large psychological battle and as we all know we have to tackle the small things to stop this. So I am going for my procedure today and will keep you posted of the outcome. These things are the small steps on the big journey, feeling normal and above all else taking control in an otherwise unpredictable life with cancer.
Buddha
After writing about my feelings on Saturday I received a lot of messages from people wishing me well and indeed volunteering to help fundraise. All of this brought a real smile to my face. These are the things that keep me going. Humanity is a wonderful thing and the power of sharing can never be over emphasised. This platform has been my saviour these last few months and the fact that others can gain a little insight about how best to deal with their own healthcare is a great feeling. I was reading an interesting article last week about why people blog in difficult times, especially when grieving. I am grieving, for the life that I have lost and so I could relate to this article. It basically said that it is a way of coming to terms with your situation and in a way it makes it real but manageable. This is all true. For me it is also about sharing and making people more powerful through knowledge.
Another thing I would like to share today is a practical tip for people going through chemo. As we all know the chemo leaves you in a bit of a state on so many levels. Hair loss is a big thing for many. I have already blogged about the whole wig issue, but the other aspect of hair loss is that all of your hair comes out. Now this is great when it comes to throwing away the razors for legs and underarms but not so great when you have no eyebrows or lashes. This has been the worst bit for me, in my first chemo and this one. Eyebrows and lashes are pretty resilient and take a while to come out. As a result for one round of chemo its not so bad. By the time they fall out the regime is almost over, thankfully. I remember when mine did come out that I felt like an alien, I was seriously ill in hospital at the time though so I didn't ponder it for too long. This time as I am on my current chemo indefinitely and am now in month 8 of it the eyebrow/lash loss has been a bit more of an issue. So today I am going to have my eyebrows permanently tattooed. A friend of mine introduced me to a lovely and very qualified girl who is doing it for me. She has a nursing background and this gives me even more faith in her. She is keen to cater for women who like me have lost their hair due to chemo. Obviously this is a procedure that many people get for cosmetic reasons but for some of us it goes a little deeper. I already know some women from clinic who have had it done and it really helps to make us feel better about ourselves in an already difficult time. This is not my most pressing issue (that would be staying alive) but it is one that raises its head. Therefore I am glad to be taking action today. This might be published as a way of letting other women know of what's available to them during chemo, so yes it looks like I am going to be in the newspaper again, this is becoming a habit! For some women it will be irrelevant. for others not, so they have the choice. I know that for some health conditions, this is available on the NHS. Women with alopecia are offered it, but as far as I'm aware it is not readily available to cancer patients. I suppose this makes sense for those going through one treatment, the transient cancer club members, but for others who are living with metastatic cancer who now have chemo regularly it is perhaps something which should be looked at.Again, I think that this is an issue which has been raised but I don't have all of the facts. It is another example of the things that we don't think about but should. Without any doubt how we look is way down the list of what's important and when facing all of the challenges that we do, we end up with more beauty within than we could ever have hoped for, but all of the small details of fighting cancer can end up culminating into a rather large psychological battle and as we all know we have to tackle the small things to stop this. So I am going for my procedure today and will keep you posted of the outcome. These things are the small steps on the big journey, feeling normal and above all else taking control in an otherwise unpredictable life with cancer.
Saturday 23 November 2013
A problem shared...
Never apologize for showing feeling. When you do so,
you apologize for the truth....
Benjamin Disraeli.
I haven't blogged for a couple of weeks. This is mainly because nothing of real consequence has sparked a thought which leads me to write. This is still true today, however I have recognised in the last few months that writing about my feelings really helps me and therefore I am going to put down what's going on in my mind and see if it helps. A nagging feeling has been hanging over me. I have tried many things to shake it off as it's leaving me very unsettled and I am not in as positive a place as I usually am and would like to be. My days are filled with many variations on the same theme and it is taking many twists and turns. It's quite basic this theme really and I'm pretty sure everyone will relate to it. It is simply this...I don't want to die.
I have no idea why this is so prominent in my mind at the moment. I have been living with secondary cancer for nearly 14 months and, especially in the last 6 months (great scan results etc) I have taken a lot of strength from my positive mindset. I actually had a very encouraging meeting with my consultant last week. I had asked her about referring me for a relatively new cancer treatment called radiofrequency ablation. This essentially burns the tumours off and has a fairly good success rate. She is going to refer me to the appropriate people to see whether or not I am a candidate for this (there is certain criteria to meet). She also brought up the idea of me having part of my lung removed and this is going to be looked at. Again this may not be possible, but it is another avenue of hope. I have to mention here that my recent press coverage of poor NHS care may have assisted in raising my profile and thus being offered more. I don't know but it does, for me, reinforce what I regularly talk about, taking action and being in control of your care. So all of this is surely positive, and yet my fears are riding high just now alongside a strong feeling of why me.
I am struggling to live in the day and instead doing what I know to be dangerous, and projecting. Maybe it's that time of year, Christmas is quite a nostalgic time with a "new" year just around the corner. Yesterday while at Silverburn I noticed a real Christmassy feeling and I found myself resenting those around me who were free to enjoy it without worrying about if this would be their last. Now, to rationalise this, I have no idea what anyone else is going through, just as no one knows what I am going through. I would very much doubt that strangers would look at me and suspect that I was undergoing chemo for terminal cancer, I look very well. I am aware of the fact that I don't know what is going on with others but at face value, they don't have my life, they haven't been dealt my hand! For those people who I do know don't have cancer I am also feeling resentment. Why the fuck did this happen to me? That's where I am at sadly. I am very tearful and without any warning I will suddenly have a horrible sinking feeling in my tummy and I will involuntarily say to myself "I don't want to die". Olivia dressed up last night as a teacher, which meant that she had some of my clothes on etc. She came downstairs and I laughed, then just as quickly I felt incredibly sad and upset that I may not get to see her as a real adult. These are the regular thoughts that I am experiencing. I'm consumed by the "poor me's". Today I am trying to shift my mood by examining all of the possibilities available to me. I am back on the trail of the clinic in California and its radical cancer treatment. I spoke to a girl I met for the first time the other day about it, and I said that it was an expensive option. She asked if I had thought about fundraising for it. I hadn't and I suppose my first thought was, well why should people give their money to me. Do I have low self esteem? It would appear so, as this is my one and only life that we are talking about. So today I am thinking well why not? It's a possibility and I am taking strength from it. It's all I can do. The odds are stacked against me but I must find a way to believe that anything is possible. There, that's better my feeling are out. Living with this illness is hard, sharing how you feel about it doesn't have to be.
you apologize for the truth....
Benjamin Disraeli.
I haven't blogged for a couple of weeks. This is mainly because nothing of real consequence has sparked a thought which leads me to write. This is still true today, however I have recognised in the last few months that writing about my feelings really helps me and therefore I am going to put down what's going on in my mind and see if it helps. A nagging feeling has been hanging over me. I have tried many things to shake it off as it's leaving me very unsettled and I am not in as positive a place as I usually am and would like to be. My days are filled with many variations on the same theme and it is taking many twists and turns. It's quite basic this theme really and I'm pretty sure everyone will relate to it. It is simply this...I don't want to die.
I have no idea why this is so prominent in my mind at the moment. I have been living with secondary cancer for nearly 14 months and, especially in the last 6 months (great scan results etc) I have taken a lot of strength from my positive mindset. I actually had a very encouraging meeting with my consultant last week. I had asked her about referring me for a relatively new cancer treatment called radiofrequency ablation. This essentially burns the tumours off and has a fairly good success rate. She is going to refer me to the appropriate people to see whether or not I am a candidate for this (there is certain criteria to meet). She also brought up the idea of me having part of my lung removed and this is going to be looked at. Again this may not be possible, but it is another avenue of hope. I have to mention here that my recent press coverage of poor NHS care may have assisted in raising my profile and thus being offered more. I don't know but it does, for me, reinforce what I regularly talk about, taking action and being in control of your care. So all of this is surely positive, and yet my fears are riding high just now alongside a strong feeling of why me.
I am struggling to live in the day and instead doing what I know to be dangerous, and projecting. Maybe it's that time of year, Christmas is quite a nostalgic time with a "new" year just around the corner. Yesterday while at Silverburn I noticed a real Christmassy feeling and I found myself resenting those around me who were free to enjoy it without worrying about if this would be their last. Now, to rationalise this, I have no idea what anyone else is going through, just as no one knows what I am going through. I would very much doubt that strangers would look at me and suspect that I was undergoing chemo for terminal cancer, I look very well. I am aware of the fact that I don't know what is going on with others but at face value, they don't have my life, they haven't been dealt my hand! For those people who I do know don't have cancer I am also feeling resentment. Why the fuck did this happen to me? That's where I am at sadly. I am very tearful and without any warning I will suddenly have a horrible sinking feeling in my tummy and I will involuntarily say to myself "I don't want to die". Olivia dressed up last night as a teacher, which meant that she had some of my clothes on etc. She came downstairs and I laughed, then just as quickly I felt incredibly sad and upset that I may not get to see her as a real adult. These are the regular thoughts that I am experiencing. I'm consumed by the "poor me's". Today I am trying to shift my mood by examining all of the possibilities available to me. I am back on the trail of the clinic in California and its radical cancer treatment. I spoke to a girl I met for the first time the other day about it, and I said that it was an expensive option. She asked if I had thought about fundraising for it. I hadn't and I suppose my first thought was, well why should people give their money to me. Do I have low self esteem? It would appear so, as this is my one and only life that we are talking about. So today I am thinking well why not? It's a possibility and I am taking strength from it. It's all I can do. The odds are stacked against me but I must find a way to believe that anything is possible. There, that's better my feeling are out. Living with this illness is hard, sharing how you feel about it doesn't have to be.
Thursday 7 November 2013
The next chapter
Money can't buy you happiness but it does bring you a more pleasant form of misery.
Spike Milligan
I received official confirmation that I will be given an early pension based on ill health. How does it feel? Where to begin? An old friend from Israel (who clearly hadn't been following my blogs, hmm) asked if I had won the lottery. Well here's the thing...
Life is a lottery, it really is. Not one of us knows what is going to happen, for good or bad. I didn't think that I would be giving up work for good at the age of 42. Had someone told me this may happen it would have been incomprehensible. Obviously my circumstances are adverse but can we really take good from bad? Again, I would not necessarily have believed so just a short time ago. However the saying that life is what you make it, is the truth. Without adopting a new perspective I would not have been able to cope very well with what is my life today. Olivia asked me the other day if I would still be here this Christmas. I was able to reassure her that I would, because I will, as far as I know, unless something happens outwith my control between now and then. This is the case for all of us. However when she then asked me about the following Christmas I was less confident of my reply. Instead of giving a yes or no answer I told her that as it was a long time away let's not think too much about it, but instead focus on the here and now. She seemed pretty happy with that answer, oh the wonder of being ten.
This is the problem we lose ourselves as we leave childhood. As adults in modern society we are often not living in the present, but instead projecting and thinking of what we will do next. Now, being in the position that I am in is a bit like being a child again. Every day is lived without giving too much time to thinking about the next one. It's very healthy and very liberating. Having confirmation that I will not be returning to work enhances that freedom. I am about to close one chapter of my life but at the same time I am going to open a new one. I will miss certain aspects of working life but I will enjoy the new aspects of being retired and I wont look back. This is all part of what I suppose is acceptance. My cancer diagnosis, subsequent NHS fuck ups and my somewhat precarious health condition today is what it is. I cannot change it. I can only do the best with it. If I wallow in it my time will be wasted. Today I recognise that. A year ago I could not have contemplated retiring. It would have seemed too final, too much like the cancer had taken my life. It has not, not yet. It has instead put me on a different path.
I will now, thanks to the SPPS and other finances put in place by me, have an income, which while by no means extravagant, will afford me a decent life. In this crazy busy life that we lead, not everyone thinks about bad news being bestowed upon them. It's no surprise, it's a bloody depressing thought. However with cancer on the increase and affecting younger people it is perhaps advisable that we do take stock of potential health problems both cancer and otherwise. Life is hard when you are terminally or chronically ill and finances should not add further to this. My advice is for people to ensure that should they become unwell, they have some financial cover in place. I took out policies many years ago on the advise of others, that as a single parent I would be best placed to have financial cover should anything happen. The difference in monthly outgoings was minimal. I wisely acted accordingly. This, thankfully has helped me through these unforeseen circumstances and allows me to retire and live a different life to the one I imagined, it allows me to accept what is going on. Money is a vital part of our wellbeing both mentally and physically. The philosophy of "it will never happen to me" is a good one and probably the only way to keep sane and actually live life. However, when it comes to protecting yourself should it happen to you, it's not a bad plan. At the risk of sounding like an advert for Aviva (that's who I was insured with), I would strongly recommend that people think about safeguarding themselves in times of illness. Over the years I would contemplate cancelling policies, with a why am I wasting money attitude. Thankfully I never did and I look back now and realise that the money I would have saved would have been spent on irrelevant things. I am aware that not everyone can afford to insure themselves as much as they would like but I would say that it is worth investigating. MacMillan research has shown that the people worst affected by cancer are those in full time employment. Government benefit agencies are not very compassionate to those diagnosed with cancer. Just in the last 2 years changes have been made to Disability Living Allowance, in that cancer patients are far less likely to be eligible for it. This, sadly will only get worse. It's not so dissimilar to my warnings about the NHS, take action, look after yourself. I can accept my life today and make the best of a bit of a bad hand, that would be harder to do if I had my life turned upside down through financial hardship. No one wants to think that they will get cancer, and hopefully you won't but there's no harm in dipping your toe in the murky water, protecting yourself and then carrying on with living life as happily as you can. So instead of buying the scratch card or the "winning" ticket every Saturday, perhaps it's wiser to invest in the most unpredictable lottery of them all... the one that we call life.
Spike Milligan
I received official confirmation that I will be given an early pension based on ill health. How does it feel? Where to begin? An old friend from Israel (who clearly hadn't been following my blogs, hmm) asked if I had won the lottery. Well here's the thing...
Life is a lottery, it really is. Not one of us knows what is going to happen, for good or bad. I didn't think that I would be giving up work for good at the age of 42. Had someone told me this may happen it would have been incomprehensible. Obviously my circumstances are adverse but can we really take good from bad? Again, I would not necessarily have believed so just a short time ago. However the saying that life is what you make it, is the truth. Without adopting a new perspective I would not have been able to cope very well with what is my life today. Olivia asked me the other day if I would still be here this Christmas. I was able to reassure her that I would, because I will, as far as I know, unless something happens outwith my control between now and then. This is the case for all of us. However when she then asked me about the following Christmas I was less confident of my reply. Instead of giving a yes or no answer I told her that as it was a long time away let's not think too much about it, but instead focus on the here and now. She seemed pretty happy with that answer, oh the wonder of being ten.
This is the problem we lose ourselves as we leave childhood. As adults in modern society we are often not living in the present, but instead projecting and thinking of what we will do next. Now, being in the position that I am in is a bit like being a child again. Every day is lived without giving too much time to thinking about the next one. It's very healthy and very liberating. Having confirmation that I will not be returning to work enhances that freedom. I am about to close one chapter of my life but at the same time I am going to open a new one. I will miss certain aspects of working life but I will enjoy the new aspects of being retired and I wont look back. This is all part of what I suppose is acceptance. My cancer diagnosis, subsequent NHS fuck ups and my somewhat precarious health condition today is what it is. I cannot change it. I can only do the best with it. If I wallow in it my time will be wasted. Today I recognise that. A year ago I could not have contemplated retiring. It would have seemed too final, too much like the cancer had taken my life. It has not, not yet. It has instead put me on a different path.
I will now, thanks to the SPPS and other finances put in place by me, have an income, which while by no means extravagant, will afford me a decent life. In this crazy busy life that we lead, not everyone thinks about bad news being bestowed upon them. It's no surprise, it's a bloody depressing thought. However with cancer on the increase and affecting younger people it is perhaps advisable that we do take stock of potential health problems both cancer and otherwise. Life is hard when you are terminally or chronically ill and finances should not add further to this. My advice is for people to ensure that should they become unwell, they have some financial cover in place. I took out policies many years ago on the advise of others, that as a single parent I would be best placed to have financial cover should anything happen. The difference in monthly outgoings was minimal. I wisely acted accordingly. This, thankfully has helped me through these unforeseen circumstances and allows me to retire and live a different life to the one I imagined, it allows me to accept what is going on. Money is a vital part of our wellbeing both mentally and physically. The philosophy of "it will never happen to me" is a good one and probably the only way to keep sane and actually live life. However, when it comes to protecting yourself should it happen to you, it's not a bad plan. At the risk of sounding like an advert for Aviva (that's who I was insured with), I would strongly recommend that people think about safeguarding themselves in times of illness. Over the years I would contemplate cancelling policies, with a why am I wasting money attitude. Thankfully I never did and I look back now and realise that the money I would have saved would have been spent on irrelevant things. I am aware that not everyone can afford to insure themselves as much as they would like but I would say that it is worth investigating. MacMillan research has shown that the people worst affected by cancer are those in full time employment. Government benefit agencies are not very compassionate to those diagnosed with cancer. Just in the last 2 years changes have been made to Disability Living Allowance, in that cancer patients are far less likely to be eligible for it. This, sadly will only get worse. It's not so dissimilar to my warnings about the NHS, take action, look after yourself. I can accept my life today and make the best of a bit of a bad hand, that would be harder to do if I had my life turned upside down through financial hardship. No one wants to think that they will get cancer, and hopefully you won't but there's no harm in dipping your toe in the murky water, protecting yourself and then carrying on with living life as happily as you can. So instead of buying the scratch card or the "winning" ticket every Saturday, perhaps it's wiser to invest in the most unpredictable lottery of them all... the one that we call life.
Wednesday 6 November 2013
Please sir can I have some more...
"Every man's disease is his personal property"
Alonzo Clark
"Knowledge is power"
Francis Bacon
Having written about my concerns over Pink October last week, I have been thinking more generally about our healthcare system and the part that we play in it. Obviously in my case, having breast cancer, I look at the role that the Pinkness of BC awareness plays in the potential for us to undermine the dangers of it. However, I am also aware that my journey through breast cancer and my current situation has also been partly due to the way in which we interact with our health care on all levels.
I guess I have to conclude that we are still a pretty deferential bunch when it comes to dealing with doctors and other health care professionals. I believe that I went into my diagnosis with a mixture of pink blind optimism and hard to shake old school deference. I have learned the hard way, but perhaps others could learn through my painful experience, the easier way.
Lesson one that I think is important to take heed of is this, our NHS is overstretched and it is managed by mainly non medical people. As a result of this the system is organised in such a way that its main aim is to be cost effective. It is run as a business, that is a reality and has been for a very long time. As a business it works on averages and statistics. It is not run on looking at each patient as an individual. That is simply not good business. Therefore the reality is that you have to look after yourself within this system. It is essentially your responsibility to get the best deal. You have to broker your own medical attention. To contextualise this here is my situation in brief. I was diagnosed with breast cancer and told that the proposed procedure was a lumpectomy followed by possibly/probably radiotherapy. Now this was on the premise that my cancer was grade 1 (maybe 2) and non aggressive. This was based on statistics showing that more breast cancer was likely to be grade 1 or 2. My cancer was grade 3, aggressive and triple negative (less researched and therefore less easy to treat with already developed drugs). I subsequently needed chemo. I have since been quoted this: "there is not a significantly higher rate of recurrence in women who have a lumpectomy versus a mastectomy". Now the key word here is "significantly". I (too late) have researched this and found that indeed there is a higher chance of recurrence for women ( I realise that men suffer from breast cancer too but it is mainly women) who have a lumpectomy. I have no interest in the word "significant" or indeed statistics. I am ME and I wish to be treated as such. I had a local recurrence which meant that it was the same cancer in the same area. Again this is my belief but none of it was discussed properly with me, if I remember correctly (but I was hysterical at the time) the original surgeon said to me "we may not have got all of it first time around". Hmm, they missed a bit. Now my point is this, a mastectomy would have ensured that this was not the case. For many a recurrence means that the cancer is in the chest wall. A lumpectomy versus mastectomy as far I know would not make a difference in such a scenario. This backs ups the theory of them both having pretty much the same outcome. However, this wasn't the case for ME. To date scans are still showing that I have no cancer in the chest wall, my recurrence was contained within the breast, without a breast I would NOT have had recurrence which then metastasised and would not be living with terminal cancer today. And so back to my whole message. I don't want to be treated based on averages, I want to be consulted, thoroughly on MY best plan of action. The one that will help to keep Lesley Graham alive. I wasn't! I would have liked to have been given all of the facts and then presented with my options. The facts that I have uncovered for myself today would, I believe, have led me to opt for a mastectomy 2 and a half years ago
Then there is the reality of this. Our system doesn't stretch to such luxuries. The breast clinic is a busy place. The waiting room is always full and there are only so many doctors there to deal with us. There isn't time to consult thoroughly with everyone. Bottom line, resources are finite. I understand this more than most having been a teacher for many years. I was frustrated at the shortcomings of the system (30 pupils ranging massively in ability all in one class, is not a recipe for a sound education for everyone), my hands like every other teacher were tied. I wasn't enabled by the system to do my job to the best of my abilities. I have no doubt that this is the same for doctors. They are working to business plans, created by people who are trying to save money. But the key to preserving your own health, no matter what the condition, is to be less deferential and more in control of your illness. Ask for more information about your illness and your future. Don't be afraid to take up more time with doctors, this is your life at stake. This is not easy, when given a diagnosis of cancer or another life threatening illness, you have enough to deal with, but it is essential I would say, and I think I am the proof.
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