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Saturday, 31 December 2011

New Year is a new slate

It is almost 2012 and it is a year that I am looking forward to. When I was diagnosed with Stage IV breast cancer my goal was to make it to 2012 to see the Queen's Diamond Jubilee and the Olympics being staged in London. Now I need to set new goals...or do I?

Each year is a new slate and for that matter so is each day, so maybe I need to start to doodle on that slate and try to make sure that each day has a few smileys on it. If we don't value each day then we are really losing out. I try to achieve something each day, no matter how small.

I was watching an interview of Oprah Winfrey on the internet yesterday. She was talking about how she felt she was born for greatness, but that this was not necessarily as arrogant as it sounds. Greatness is something that we all have in us but that doesn't mean that we are all going to be rich or famous. Greatness is being the best that we can be, and that does not have to be earth-shattering, but just satisfying to know that we are doing the best we can at any particular time, and in any particular place. The greatest performance at the Olympics this year might not be the one that hits the headlines. After all, will the best performance be by the person who wins with an average time, or the person that comes last but shatters their personal best and may be also their national record etc.

Maybe my New Year's resolution is to get to be better at doodling on that slate! :O)

Friday, 30 December 2011

Nearly lost my blog!

I upgraded my version of Explorer and I nearly lost my own blog because the one-click buttons I used before have disappeared!  Crickey!

Why the heck did I do that?  Now I have something I don't like using as this is the version that I have on my Netbook.  Newer most certainly isn't always better.

Wednesday, 21 December 2011

Why are doctors so scared?

A week ago yesterday I had my left total hip replacement operation at the Royal Bournemouth Hospital.  When a student nurse unpacked my bag when I got to the ward she found my supplements and immediately reported this to a Staff Nurse, who had to clear it with the Doctor on duty.  He eventually reluctantly said that I could keep them, but that he would not prescribe them as other doctors would think he had lost it.

Now, I kind of expected this sort of a reaction, but to one of the supplements which they seemed very suspicious about, I have to admit that I was very surprised by this reaction.  The supplement in question is Arnica in homeopathic pillule 30c strength.  True, this was a junior doctor, but I had expected him to have some knowledge about the properties of Arnica.  The next day a pharmacist came round to check my meds and she was indeed suspicious of the other supplements, though this was partly because I had each day's worth in tiny jam pots who get in hotels etc rather than in their original containers (it is just so much easier to do it this way, rather than daily).  The pharmacist's opinion of Arnica - it is amazing stuff.

The properties of Arnica which help to reduce bruising and swelling are very well known, but still they come under the umbrella of 'Alternative' medicine and so conventional western medicine ignores something which is so effective and which has no known interactions with conventional medicine.  THINK people!  If it didn't work, people would not keep on using it in the age of Big Pharma and all their concoctions which are 'proven' to work.  It is used because it works and it is safe when used correctly.  I don't want to take things which give me side effects so I have to take more meds for those side effects, which give me side effects ... and so on round in circles. for more info.

Doctors are trained by a system which is totally in thrall to science, and which seems to embue them with the belief that there is only one way to deal with a given illness or situation.  Surely they still practice the art of medicine don't they?  This term indicates to me the ability to think and work from experience; to be able to adapt to a situation and use the treatment which is best suited to the patient, the disease and the situation.  One size does NOT fit all, and a monolithic approach is of no help to anyone when they are trying to deal with something that is complex, and besides, surely they should try a kinder approach first before doing something radical.

Tuesday, 20 December 2011

One week post hip op

It is a week ago today (about noon) that I had my left total hip replacement operation, and it has been such a positive experience. The Royal Bournemouth Hospital was such a different experience to Southampton General Hospital on so many levels.

I arrived in the dark as I had to be there by 7.15 to book into the Sandbourne Suite which has a very posh reception area from whence you go to a small consultation room to go through the final checks. Once you are gowned up and marked up to make sure they do the right thing, you go through into a waiting room. Had to wait until about noon, but as I was one of the first in I got the nicest chair which reclined so I was alright Jack! There was a delay because of a problem with the air-con in the theatres which was supposed to have been fixed at the weekend, and this delayed things by about an hour so, as the second on the list, I didn't get to walk over to the theatre until noon - with a teddy bear in hand of course.

I was on the ward by about 4pm and on to one of those wonderful hospital beds which is adjustable to suit you without the effort of having to move yourself. I was on an air matress for a day or so until they got me out of bed. When they did get me out I managed to walk to the loo, but this was overdoing it a bit as I nearly passed out when I got back to the bed so I had to lie down on oxygen, rather than sitting out. However I didn't need a blood transfusion this time and managed to get back on track by day two post-op, and making sure that I did the exercises in bed and some deep breathing. My blood pressure was a bit up and down the first couple of days, which is probably what contributed to the lightheadedness.

I have been taking Arnica pillules (homeopathic medicine) since about a week before the operation, first as a lower 6c dose, and then 30c post-op. This has really helped with the bruising and general discomfort, and if it wasn't for the staples closing the wound I don't think I would really notice there was much of a problem, although there is a large area of bruising which has been coming out. One of the nurses actually asked if I had actually had a hip replacement because the wound was doing so well. When they unpacked by stuff, once I got on the ward, they were immediately very suspicious of the supplements which I had brought with me which were then promptly locked away until a doctor could have a look at them. He said he couldn't officially prescribe them as he would be laughed at by other doctors, but when he found out what they were he said he would not object. He didn't seem to have any knowledge of the properties of even Arnica, which is very well known, and trotted out the usual schpeel about how none of this had been researched...which is so untrue. A pharmacist came along later to check my meds and make sure I had everything I needed and when I mentioned the Arnica to her she said that it was wonderful stuff. So why are they not routinely prescribing this? Who knows more about medicines - doctors or pharmacists? Obviously pharmacists as the chemical properties of medications is what they do. When a doctor needs to check if there will be any adverse interactions between meds they check with the pharmacist. So again, why is Arnica not in general use both pre and post operatively?  Think of the saving on pain meds and discomfort for the patient?

The staff were also very different from Southampton.  First of all there were so many of them - it was amazing, and secondly they actually look an interest in the patients.  Because there were so many buzzing around there were very few call buttons being pressed as you knew that you could just ask someone to do some little thing while they were passing, and they would either do it then, or actually come back in a few minutes as they said they would.  At Southampton it was rather a case of ring now and someone might come in half an hour and tell you they will be back soon, so then you could ring on a second or third occasion and possibly get something done.

The whole atmosphere was so different and more relaxed.  Staff didn't spend their time sitting chatting at the nurses station.  The food was very good, within the obvious limitations of mass producing food for the same time.  It was 'home' cooked and tasty and served on the ward.  Also I was impressed by the way that different grades of staff just mixed in to get the job done; the ward clerk or nurses helping with meals and a general lack of 'that's not my job' kind of attitude that I experience else where in life, both in hospital and work.  There was laughter on the ward, not the depressed and anxious silence that I have experienced elsewhere.  I had a lot of compliments on the fabric flowers I have wound around my crutches especially when I took a trip down to the Carol Service in the Atrium on Sunday afternoon, shortly before I went home.

Being Home Alone is rather nice as I can potter around in my own space, but the hosptial routine is quite nice as well as I am tending to lose track of time and day at the moment.  This is partially because I have not been sleeping as well because I can't get as comfortable in my own bed.  However with the flower power crutches in hand it is onward and upward...

Tuesday, 13 December 2011

The day has come at last

In less than 10 hours I will be reporting to the Royal Bournemouth Hospital for the hip replacement operation that I have needed for so long.  I can't wait as I am really looking forward to having this done.  I know that sounds strange, but it is so restricting my life at the moment that I just want it to be over.  I want to be able to walk without sticks and without thinking about how I am walking.  I want to be able to cross a road without wondering if I might become road-kill if I can't move fast enough as some drivers just think of pedestrians as being targets.  Yes I AM going as fast as I can ...

The Occupational Therapist came out today but I already have most of the things I need from having my right hip replaced 3 years and 11 months ago.  Wow, when you see it written down like that it really is a long time ago, 47 months.  That operation was rather more traumatic, being admitted straight from the chemo clinic because a tumour had caused a pathological fracture of the hip.  This time it is just osteoarthritis in a deformed hip.  In fact it will be quite strange to have a left hip that works properly.  Not that it really caused me too many problems until the last few years, but all those years using heavy cleaning equipment and the side effects of my cancer treatment have not helped thing.  So now I am nearing a new birthday, a third one to celebrate.  The day I was born, the right hip's birthday and now the left hip's birthday, it is just a shame that they are all in the winter.

So it is back to going up one step at a time, and down one step at a time, until I can just walk up and down stairs without thinking.  Strangely enough your mind adjusts to one step at a time and it is quite scary when you have to remember how you go one step at a time.  Maybe this has something to do with having grown up in a bungalow and gone to primary school in a small village school on just one level.  I find I still have to think about the technique of using stairs some times.  They used to scare me when I went to a friend's house as a child.

Onward and upward!

Sunday, 11 December 2011

Christmas decoration and operation preparation

Yesterday evening I went to a carol service at New Milton Baptist Church and on the way home we went and had a look at some of the Christmas lights.  Today I got my Christmas decorations out of the attic and I've put some of them in the spare bedroom window.  Not much, but I hope it adds to the feeling that Christmas is fast approaching.

I've done a load of bits today to try and get everything ready for when I go into hospital.  After all there is no way I will be able to get up the loft ladder after the hip replacement operation!  I have also ordered the turkey crown to be collected from Waitrose on 23 December, ordered my repeat prescription and so on.  I think I have finished getting my bag packed, but I should only be in for 4 days this time.

I have an Occuptional Therapist coming out to the house next week to make sure that I have all the aids that I need.  I think the only thing that worries me is being able to get in and out of bed once I get home and don't have the lovely hospital bed that I can manipulate into the most comfortable position.  I am hoping that the weather doesn't turn too icy so I can get out and about as soon as possible.  Getting the hip into action is important, or stop DVTs but to get the muscles built up and allow my body to get used to having a hip that can work properly for the first time in my life.  I just have to hope that they make my legs the same length as I have spent far too long with one leg shorter than the other, which in turn has been throwing out my neck and back.

I want to be able to enjoy the Christmas holidays despite the restrictions that I will have.  I love to be able to snuggle up in the house with some candles burning and a good book or film.  I can hear the wind and rain lashing down outside right now, and here am I comfortable in my own little world.  These days I rarely ever watch TV as I just don't find anything that I want to watch and I have started to lose interest in the news and what is going on in the wider world.  Why worry about it?  What can I do to change things?  What I do have some control over is what happens in my immediate environment. 

Thursday, 8 December 2011

Getting sorted...ish

Well today I spent time at work clearing out my desk and my locker.  It is amazing the rubbish I have collected there.  Some of it went straight in the bin and other bits into recycling.  It is nice to be ruthless about sorting stuff out once in a while, and it even better when you know that it will be taken away so you can't change your mind - that has always been one of my problems, changing my mind about getting rid of things.  After all one of the family mottos is 'keep it, it might come in useful'.  I also always feel rather guilty just throwing things away.  I know that I should have a compost heap, and I can be a bit manic about recycling metal, plastic, glass and paper; after all the possibilities are endless!  Humankind cannot go on using up the planet's resources in the way that we do, especially when a little bit of effort means that those resources can become another can, newspaper or fleece.

I am also trying to get things ready at home for being back on crutches.  I should be home after about 4 days this time, not the two weeks it took for them to let me out of the other hospital.  I need to move things upstairs as the 'facilities' are up here.  I have a small fridge that I can bring up, and all the bits for my smoothies in the morning.  I also got a soup maker on Monday when I went down to Castle Point in Bournemouth which can cook and blend it all in one...just put in the ingredients and set it up and let it go.  I hope it works.  I won't be able to stand for very long to do traditional cooking, so this should be just the thing - chop and go.

I have wrapped the presents that I have managed to get so far, so that is another thing out of the way.  Luckily I don't have many people to buy for, and I refuse to buy gifts that won't be useful or wanted.  One of my pet-hates is the Gift Set!  Grrr.  My younger neice's birthday is in mid November and it is difficult to find a present for her if you leave it too late as the shop shelves have been cleared to make way for Gift Sets.  These are the kind of thing that do the rounds at raffles for a while after Christmas because no one really wants them, or they only want part of them.  I won a cappuchino gift set in a raffle, and I only got that because I wanted the mug.  After all the coffee was actually past its best before date it had been doing the rounds for so long.  I make soya milk most mornings which has to cook so I make a bit mug of hot chocolate/coffee in the mug, which I have to confess is actually nicer cold so I finish it off in the evening after I get home from work, though on these chilly mornings the mug is a lovely hand warmer...

Wednesday, 7 December 2011

Who says supplements don't work

One week until the hip replacement operation and I can't wait.  I have been told that I can't take my supplements for two weeks before the operation and so I haven't been taking my glucosamine & chondroitin or the rosehip supplements for a week and I am slowly grinding to a halt as I get stiffer and stiffer.  I now routinely use a walking pole around college as even walking from the car to the office is getting to be more and more of a challenge.  It is 2.15am in the UK and I have been woken by the pain, so I am waiting for a stronger pain killer to work so I can get back to sleep.

Why is conventional medicine so against natural supplements? 

The rather cynical conclusion which makes sense to me is because they don't generate a profit for pharmaceutical companies and the blindness of doctors to anything that is not produced by a drug company making gigantic profits.  I once read that the top Big Pharma companies quoted on the Fortune 500 list in America make more profit than all the others put together! 

Which would you trust more?  A natural substance which has been a part of humans nutrition for thousands of years?  Or something made in a laboratory to be patented and sold with the sole purpose of profit?  Hmmmm.

Tuesday, 29 November 2011

Got the letter from the hospital

I got the letter in the post today about the operation, and I had also phoned up this morning to confirm that I could accept the date offered just incase they decided to change their mind as the phone message I received yesterday was left about 9.30am.  I should be in hospital for only 4 days this time, rather than 2 weeks when I had the other hip done because of cancer nearly 4 years ago.  This time the problem is only osteoarthritis in a deformed hip so it should be more straight forward.  Luckily I have some of the stuff that I need when I am discharged from the last time.

So my plans for the Christmas holidays have gone down the pan, but this is such welcome news.  I have been complaining about my hip to the oncologist at my treatment hospital since February and it was only when I took my sister-in-law with me in July that he agreed to do scans to make sure the problem wasn't caused by bone metastises and then eventually in August wrote the referral letter to my GP, though the surgery ignored the letter for 5 weeks because they don't seem to bother to read letters from hospital consultants.

But onwards and upwards.  I now have a couple of weeks to get things ready for the big day and to make sure that I get there for 7.15am.  Any nervousness about having another operation is nullified by the idea of being able do things again.  It is difficult to remember what being able to walk properly is like when slowly your mobility is taken away from you.  My life is supposed to be about Quality of Life now, but no one seems to be interested in it.  If the problem had been cancer, then fine I can accept that I cannot do certain things, but this has been a problem that has been deeply effecting me and for which there is something that can be done.  In many ways I have had a year of my life taken away from me when I have already outlived the average survival time of someone with Stage IV breast cancer.  I have completely lost my trust in my oncologist and GP when it comes to listening to me when I tell them about symptoms.

How does this feel to a cancer patient?  To be ignored when you are telling your doctor of symptoms and problems that you have and they choose to ignore you?  It is scary, humiliating and like standing on the edge of a very high wall and knowing that it will hurt, or possibly kill you, when you fall off.  It is incredibly frustrating to tell them about symptoms only to be ignored or told to come back when things get worse.  Worse?  Are they kidding?  I have been right every time, and they have been wrong.  How can you trust doctors who don't listen to you?  Do they all think that everyone who sits in their room is wasting their time?  I was brought up to only ever go to the doctor when there was a real problem, not when I have coughed twice.  The Hypocratic Oath starts with First do no harm.  News flash doc, but not listening to the patient has done enormous harm to some of us.  For me it is a death sentence which I am trying to appeal against.

Monday, 28 November 2011

Hip-op date

Finally got round to checking to see if I had any phone messages today while I was out at work.  Started off being a bad day (broke a jar and got a bit in my foot and my sister had to come round on her way to work to get it out for me as I couldn't get at it), but the phone call has really cheered me up.  The date will be before Christmas!  They had originally said that it might not be done until February... be continued...

Saturday, 26 November 2011

Doing the Hip-op

I had my pre-operation assessment on Thursday 24 Nov 2011.  I am hoping that they will now re-grade me from routine to something a bit more on the urgent list.  I had to give more blood, and have more x-rays done so they could evaluate exactly which type of joint they need to use.  One of the forms that had to be done was for the joint they use to be registered just incase they have to recall it!  That kind of tickled my sense of humour, and also made me think of NCIS or other detective shows where they can track the murder victim from their artificial joint number.  The other thought is that I might go past a notice in Waitrose one day to say that they are recalling that particular batch.

The whole process has been really interesting by comparison with my experience when I had my other hip done.  It is interesting to be treated as though you are a person, and given the feeling that they are actually listening to me.  At my treatment hospital I get the feeling that I am talking and it is just not registering.  The nurse practitioner I saw at my chemo clinic appointment a couple of weeks ago admitted that I have been complaining about my hip since February but it just doesn't seem to have any impact and they are just not interested in doing anything to make this whole journey a bit easier. 

It goes back to the Quality of Life concept, and in this I include everyone, and not just those of us with a 'life limiting disease'.  Does it really matter how long we live?  Isn't it really a matter of how much we get out of life?  I don't mean how much money we make or how much success and power we achieve in purely worldly terms.  You can be rich and successful and still have a rubbish Quality of Life.  No I mean what gives Quality to your own life and what makes you think that your life is content and satisfying. 

I don't have most of the things that is considered to be successful, but I have to say that at the moment I think that if I had my mobility back I would have quite a good Q of L.  It is a matter of wanting what you have, rather than having what you want.  How many things do we really need?  How many things can we actually use at any one time.

Friday, 25 November 2011

Thanks and giving - random thoughts

I am not American so I don't understand a lot of the stuff around Thanksgiving ... but ... if the American President can reprieve a couple of turkeys ... does this make us all Thanksgiving turkeys because we are still here?

Thanks and giving is what we should all do a lot more of, but certainly here is the UK a lot of people seem to be surprised, and not a bit suspicious, if you give them something.  Saying thank you is easier and is still a part of the culture though possibly only on a rather superficial lever, but giving seems to have been forgotten.  Western societies have become so dominated about me me me and the things that 'me' owns that we seems to have forgotten a sense of community and sharing. 
Giving however can be something really small, even just a smile is a gift because a gift does not need to have any monetary value.  Actually thinking about it maybe the best gifts don't have any cash value.  I sometimes get frustrated by colleagues who don't bother to think about giving others a helping hand, or if they have been given some help they simply don't consider giving any in return.  I'm alright Jack.  I hate it when you let another car out and the person behind you flashes their lights at you and makes jestures of throwing their hands up in frustration at having been held up for half a minute, or other gestures.  They would like to be let out, and if it is someone who wants to go across the traffic and go in the other direction they are not even going to be holding you up in the long run.
It was on the radio news this morning that people are going to take folks off their Christmas gift list to save money.  But what do they give anyway.  How many of you, like me, hates the 'gift set'.  Argggggh.  My neice's birthday is in mid November and it can acutally be quite difficult to find a present for her because shops have cleared their shelves for these pointless, total waste of money, giftsets in late August - or so it has seemed.
We need an Attitude of Gratitude and certainly living with cancer has given me a dose of that.  Bring grateful for every day that I am 'well' and living with incurable cancer is something to be grateful for.  That I can still work four days a week, that I can still drive my bright green car (known as Kermit the frog), that I can still do come things for myself and have not become a burden on others, that the sun is shining in a clear beautiful blue sky this morning.  If we really think the list could go on and on.

Tuesday, 22 November 2011

Quality of Life

Ok.  I admit it.  I am feeling a bit fed up with everything at the moment.  Maybe it is just the time of the year, with the nights drawing in and the short days.  More likely it is because I am getting stressed about my pre-operation assessment on Thursday.  Over the years I have been ignored by a series of doctors and I am worried that this is going to happen again and I will have to wait until February for the operation to replace my left hip. 

The nurse I saw at the chemo clinic last week admitted that I have been going on about this since February.  The trouble is that doctors no longer think of their patients as an entire being; it is all about 'their' bit.  Chemo clinic is all about cancer, so that is all they are interested in, but they told me that as they are not trying to cure my cancer that the treatment I will be given will be all about Quality of Life.  But when you tell them about things that are affecting your Q of L, and which shows up on CT and bone scans, they show no interest.  Surely Quality of Life is about my whole being, and not just the cancer.  I was born with a slightly deformed left hip which has developed osteoarthritis over the years, especially after 20 years working as a cleaner and using heavy buffing equipment.  The aromatase inhibitors that I take to control my hormone positive cancer is not bone friendly and haven't helped, and I also had a fall just over a year ago and things have been going down hill since then.  I have been telling the oncologists that I am having problems with my hip since February this year!

One thing that oncologists don't seem to realise is that we need to have hope.  Hope is not about being cured, and it is not about having a long time to live.  It is about the hope that the life that we do have left can have some quality and some meaning; that we can still be independent and contribute something to society.  Why is this so much to ask?  If we can find this hope then we can survive longer and better; we can be inspired and empowered to help ourselves and thereby save the NHS a lot of money and stop us having to go on to toxic treatments with a lot of side effects.  Hope can cost nothing but give a great deal.

Monday, 21 November 2011

That took my breath away

I just heard that a friend from one of the forums I belong to for those of us with secondary (metastatic) cancer has died.  I had hoped that the fact that we had not heard form her was because she was partying too much, but the last report was that she had some new brain mets.

I don't know why, but that made me gasp and quite took my breath away for a minute.  I know it shouldn't, but it does make me feel as though I am edging inevitably towards the abyss.  I try to be philosophical about death and I am by nature rather fatalistic, but it just makes me realise what my inevitable path is likely to be.  I am feeling lonely at the moment which hasn't really helped.  No one calls, no one takes much interest in my existence, no one really cares.  With the news that they may not do anything about my hip until February it just makes me wonder why I bother.  What is the point of being alive?  Does anyone ever read this?

Sunday, 13 November 2011

Mindful eating leads to better nutrition

What to eat?  This is a minefield of monumental proportions.  We are constantly being bombarded by this being good, that being bad; only to find that in a couple of weeks it is the other way around.  I came across this and it made me think that it is not only what we eat, but the way that we eat it which could give us a really nutritious diet.  I did a mindfulness course at the beginning of this year and on the retreat day we practiced mindful eating, though I haven't done much since because like so many others I don't give my food the attention that it deserves.

This is an interesting article from the Kallo Food Academy which is on Facebook. I know that some of you are not on fb and don't wish to be, so I thought I would sumarise it. If you are on fb you can go to the page via this link:  The article on fb is by Gaynor Bussell, BSc (Hons), RD, RPHNutr

Mindful eating has come to be seen as a long-term solution to nutritional problems, both obesity and eating disorders.  Mindfulness is not just an ‘alternative’ practice but a very practical way of being able to allow yourself to be aware of the present moment in which we are and in proper scientific journals it is being described as ‘an astute, nonjudgmental awareness of the present moment’. Mindful eating can therefore be ‘a non-judgmental awareness of physical and emotional sensations while eating or in a food –related environment’.

It partly works by reconnecting us to the food that we eat and the way that we eat it. So many people now think that food is something that comes in a packet from the supermarket shelf, coolers or freezers. How much do we allow ourselves to experience the flavour of what we are eating, and the experience of eating it by concentrating on other things? This can leave us still feeling hungry and ready to eat more by denying our mind and body the realisation that we have just eaten. I tend to be as bad at this as the next person. I eat my lunch at my desk while working during the week. When I get home I take something up to my study to eat while I check what has been going on with the forums and e-mails, so I eat at the desk again. Breakfast I just drink my smoothie as quickly as possible as I am always late these days. If your mind doesn't recognise that you have eaten then of course you will want more.

Mindful eating is about focusing not only on what you are eating and allowing your mind to know that it has just eaten. It is about the whole process of making and consuming our food. Being mindful about food mean that we would tend to eat less and be less responsive to the triggers that often lead us to eat - advertising, anxiety, depression, boredom or just because it is available. Mindful eaters tend to eat less than mindless eaters.

By being more aware of the nutritional value of what we eat will make us appreciate how it is powering our body to resist disease in any form, and how it is helping to regenerate the body. This awareness of what nutrition can do for us will also encourage us to have a healthy and balanced diet, though it does not mean that we will turn into perfect eaters over night, though hopefull not to develop 'orthorexia nervosa' which is an obsession with eating only uber-healthy food. A balance has to be struck otherwise we could end up cutting out nutrients that we also need in moderation. Humans get salt from their food, but not too much, and there are other nutrients which we need, such as a healty balance of fats that help the body to work properly.

Mindfulness is a way of being more aware, empathetic, accepting and balanced which is part of becoming an optimal person in mind, body and soul

ALSO 10 steps to Mindful Eating also on the Kallo Food Academy
1. Allow yourself at least 20 minutes to sit and focus on your food without any distractions, so no TV, computer, smartphone or even a newspaper

2. Take pleasure in planning your meals and snacks; think in advance and make sure you have the ingredients on hand to make what you have planned. This can help you resist eating whatever is around

3. Enjoy preparing your food, even if it is simply putting a topping on some rice cakes; try and make it as a creative art and pleasing to look at, for example, add some garnish for colour.

4. If you leave preparing your meal until you are absolutely ravenous you may be tempted to gorge everything in sight! Try to arrive at your meal feeling a little hungry but not famished.

5. When you can, lay a place for yourself to eat, adding a napkin, place mat and even flowers if you like. Use a nice plate, but if you are trying to cut down on your intake, use a smaller plate.

6. Really notice each mouthful as you eat; relax, chew thoroughly and be aware of the flavour and texture of your food.

7. If your mind wanders to other subjects, bring it back to your food, perhaps thinking about how it arrived at your plate, from farm, maybe food manufacturer or shop, and then your preparation of it.

8. Connect with the food you are eating and think about whether it is nourishing your body and mind.

9. Notice how full you are feeling and stop when you feel pleasantly satisfied rather than stuffed!

10. When you have eaten, make a mental note that the meal is over and clear it away. Try not to think of this as a chore but just the completion of the meal, and while you're doing it think about how nice it was, how you feel and how much you will enjoy the process again when the next meal or snack comes along.

Saturday, 12 November 2011

What is courage?

Part of me loves the long evenings when I can snuggle up and put on some candles, but it can tend to be very grey and damp in England which can make you feel a bit low. However today the sun is out at the moment and the trees in front of the house have dew drops glistening and look rather pretty.  Today is one of those days when it is easier to look on the bright side of life.  A day when having the strength to get on with life is much easier.

I don't think that we recognise the strength that we have within ourselves enough. I think we tend to think it has to be the big things in life that proves that we are courageous, but that it so wrong. Courage is just as much about the ability to continue putting one foot in front of another, and continuing to do that day after day, although we know that it would be easier to give up. Doing your duty is one thing you could call it. Those who are awarded the Victoria or George Cross are usually very humble about it. They were doing their duty and in that moment did something astonishing not just for themselves, but for their comrades, something that they saw, in that moment, as being ordinary and exactly what they needed to do to keep putting one foot in front of another. I once heard of a daughter, who going through her father's things after his death, found a box in the drawer with his socks. On opening it she found that it was the Victoria Cross 'For Valour' - he had never mentioned it!  But then having such an acknowledgement of one's courage can also be very daunting, as it can make others expect so much of you when in truth you know that you were just doing what you needed to do that day, and that you didn't flinch although you may have been terrified.

Those who do not deal with a serious illness often say that someone who has to live with one is brave and courageous and some people have said that about me.  I just don't see it.  What alternative is there?  Sit in the corner a give up?  Never get any joy out of being alive again?  Bah, humbug.  Our own problems always seem to be bigger than anyone elses simply because they are happening to us in real time and real emotion, but one thing that I have learned over the last few years is to look at my problems one moment at a time.  If you look at a diagnosis of Stage IV cancer as a whole it is daunting, scary and makes your mind scream as it overloads with the potential of what it means.  But if you look at it one moment at a time you can begin to draw back from the edge and begin to see small triumphs in just being alive.  The sun shining in the dew on the trees, still being able to work for a living, being able to find ways of helping others and the fact that I still have something to contribute.  That is not to say that it is easy or that I don't get fed up with the whole thing, but then I just put one foot in front of the other again and get on with it. 

Friday, 11 November 2011

11th hour, 11th day, 11th month, 11th year

Somehow the two minute silence to mark Armistice Day seemed to be a bit more poignant because of the date, though we are still 7 years short of the centenary of the end of World War One.    The deaths of British service personnel in Afghanistan, and the loss of another Red Arrow pilot reminds us that the Ultimate Sacrifice for Queen and Country is not something that belongs to the distant past; that is is still very much in the present, and maybe worse still is still very much in the future.

My father serviced in the Royal Flying Corps in WW1 and was lucky enough to be injured when he was having aerial gunnery training and the plane cracked up in mid-air and he spent months in a splint only able to move his head and arms.  He didn't endure the trenches and went on to serve in the Royal Air Force in WW2, when my mother was in the WAAFs.  It is the sense of community and doing something for, and with, others that seems to be lacking these days.  Where did we lose the sense of Us; when did it become a sense of Me as being the most important thing.

Having been born in the 1960's I can look back of the World Wars as taking place between 1914 - 1918 and 1939 - 1945.  But I often think of those who lived through those wars, the impact it had on their entire existence, and the fact that they didn't know that the War would end on x date.  With WW2 there was at least a sense that the war was being won, and that there would be an end in sight.  But WW1 - endless slaughter that just seemed to be going no where.

I think that the older I get, and in my case having to face my own mortality, the more I appreciate the sacrifices of such wars.  We are not just talking about the deaths and injuries, both physical and mental, but the having to do without for a common cause, or having to make do and mend, of trying to maintain the hope that there could be a future of peace and normality.

Maybe it is my cancer diagnosis that makes me feel as though I can empathise with those generations in certain ways.  The endless pursuit of hope and a future that will give me peace and contentment because hope is something you just don't get much of when your cancer is considered incurable.  I think it is from my parents that I get the mentality to just keep trying; of putting one foot in front of the other every day with the idea that if I just keep going it might turn out to be ok.  Such a diagnosis also gives you an appreciation of the uncertainty of life that so many must have felt in WW2 especially.  The need to live today and not worry about what is going to happen tomorrow, well not worry too much.  Who knew when the bomb would drop, the bullet find its target - just get on with the moment that you do have.

Many think that Armistice Day and Remembrance Sunday glorify war.  I cannot see that.  It reveres those who made a sacrifice, and it is that sacrifice that is the centre of it all.  The loss of life, the loss of loved ones and friends, the loss of a time of peace and certainty that tomorrow is just another day.  The ranks of those who march past the Cenotaph in London on Remembrance Sunday are different from those who marched when I was a child.  They were still those who served in WW1, or even in wars before that such as the Boer Wars and you could sense the pride mingled with the pain of what they had seen and what they had lost.  There are few places in the UK which have no war memorial because their people all came home, and ironically one of them is the village of Upper Slaughter in the Cotswolds, near the village that my mother was born.  It is a 'Thankful Village', and doubly so as they lost no one in WW2 either.  How many villages do you visit which have long lists of those who didn't come home, and so many with the same surname.  Those names are engraved by the tears of those communities.  My great-uncle Frederick Courteney Selous died on 17 Jan 1917 and exactly one year later, on 17 Jan 1918 his eldest son Frederick Hatherley Bruce Selous (my mother's cousin) was killed.  It is a sense of pain that none of us wants to begin to think of in any depth because the sense of over riding tragedy can still take hold of us so many years later.  My family were relatively lucky because they were farmers, so were in a reserved occupation, but some who did go were never the same when they came back, or are "buried in some foreign field which is forever England" such as one who was a glider pilot killed at Arnhem.

Today I remember "those who shall grow not old, as we who are left grow old" and I thank those who have served in the past, and who serve now for their country.  Society may not be what they would have hoped it would be but the alternative is too awful to consider.


Sunday, 6 November 2011

Giving permission to go

My thoughts have been dragged back to the fact that I have a disease which will probably kill me.  A friend on an Advanced Breast Cancer forum died recently and this has given me pause for thought. 
My best friend died 7 years ago of stomach cancer (liver mets) and I was with her right to the end as her family didn't seem to want to put that much effort in and her husband had left her a couple of years before for another woman. You know the type, everything seemed fine then he came home one evening, packed his bags, said he had met someone else and left... I was with her in the hospice, and when one of her sisters had left to go for a walk I told Hilary that she had succeeded in all the things that really mattered in life, and that when she was ready she should go. We would miss her, but this was about what she needed to do. I made sure that she had her favourite music playing all the time, and I was reading her a story when she slipped away. It was HER time.

Giving someone permission to go is so important as it allows a peaceful transition on all sides - from those who will be left behind and the person who is dying. As much as we would want to cling to someone we have to admit in the end that we must allow them to go.  None of us can freeze frame a moment forever, except in our memory, but even there I don't think it is ever totally frozen as we remember a slightly different view each time we recall it.  Just as we are not static in time, neither is our memory; we forget, and we remember.  There is a theory that younger people may be able to think more quickly, but the older person has the greater mental power that is basically wisdom.  Wisdom is something that can't be taught, only something that can be learned.  Wisdom is the memory of a life time, and the things that have made us the person that we have become over time.  For me wisdom is also allowing people to go when they have to.  My mother died suddenly when I was 29 and it took a while to realise that for her it was the perfect time.  This didn't make it any easier at the time for me, but who are we to dictate that someone should hang on to life because we are selfish. 

My mother's brother died in January in his 97th year.  How can you regret his passing, other than on a personal level?  Not many people came to his funeral as they had mostly passed years before, though I know that it was very difficult for his sister, who is now the last of the four siblings.  She has lost the last person who remembers their childhood on a farm in the Cotswolds, of tearing around on ponies, the names of the family pets, the sounds of the house in which they grew up, and the voices that were once their entire existence.  I have some recordings of my father's voice which can instantly take me back to the bungalow where I grew up, but it is still here within me, the rooms, the furniture, the old TV my parents has bought to watch the Queen's coronation on in 1953, years before I was born.

A person who has touched your heart never totally dies while you have one memory that can make you glad that you knew them.  Parting is indeed such sweet sorrow, but memories are sweet joy.  All that any of us can hope is that we will be allowed to go with grace and love, and that those receiving us will do so with joyfulness. PEACE.

Sunday, 30 October 2011

Research funding from Pink Ribbons

Through a friend from an America forum I have read a blog page which really sums up so much of what those of us with metastatic breast cancer think and feel about the way that we are forgotten in the Pinkness of breast cancer, the fluffiness of breast cancer, the survivability of breast cancer. For those of us who have Stage IV cancer the only definition of being cured it that you die of something else! They are not trying to cure me, but providing palliative care to ease symptoms. Then they wonder why so many of us have depression and find the process of coming to terms with this diagnosis is so difficult because they give us no hope.

If you look at all the research that makes the headlines, and even those that doesn't but which some of us search out from medical newsletters and the web, it is all about prevention and stopping BC spreading. About 30% of those who are diagnosed with early stage BC will end up with mets, but BC is projected as being curable to the general public, and some young women think that is a way to get a free boob job! Ladies, think again. This disease KILLS.

The research into preventing mets is often focused on pharmaceutical medicines rather than using diet and nutrition and lifestyle as a way of preventing this. Cancer patients are just not told about this approach, unless they are really lucky to have an oncologist with an open mind. Many people with MBC only seem to want to use conventional medicine which is toxic to the whole body and not just the cancer. We all need to take some responsibility for ourselves. None of us intended to get cancer, but there are so many different things that cause it to happen that we have to do everything we can to help our body work against the cancer. There are many things we cannot alter, but there are many things that we can, we can stop storing food in plastic containers, stop eating processed junk (also known as convenience food) and go organic, give up dairy and red meat which are full of hormones and growth factors just as a starter. Then we have to do what we feel comfortable with. I take supplements, eat organic food whenever possible, gave up dairy and red meat, try to do weight bearing exercise to strengthen my bones and have given up wearing perfume and try to use personal care products without parabens etc.

‎'No one actually survives metastatic breast cancer' - You can live with it, and many of us are, but they tell us it can't be cured. Cancer Research UK once told me that they use 4% of their research budget on any form of metastatic cancer research. WHAT? They raise money based on people dying of cancer then ignore the type of cancer which causes 90% of those deaths. We are ignored by doctors until it is too late as we don't fit the profile (too young, etc.) then just tell me they will only give us palliative care and that this will be the cause of my death. If 90% of cancer deaths are caused my metastatic disease why do we get 4% of the research funding?

Read the blog at:

Friday, 28 October 2011

Big Business and politicians - do they know right from wrong?

I have the BBC as my homepage and one of the top stories this morning was this 'Directors' pay rose 50% in past year'.

What planet are these people on?  It is like the Liam Fox resignation debacle a week or so ago - WHY DO THEY THINK THEY CAN GO ON DOING THIS?  Do the bosses and the politicians really think that they can just go on with 'business as usual'? 

Responsibility.  This is a word that seems to have been forgotten, along with empathy, respect and consideration, and all those other 'old-fashioned' things that gave society a sense of cohesion, such as:
  • Simple things like holding a door open for someone 
  • Gratitide for what you do have, rather than bemoaning what you don't have
  • Doing things for others without expectation of reward
  • Making do with what you have, not endlessly wanting more
  • Being kind to the environment in the knowledge that we share this planet, not own it
  • Having ethics in business - it is not all about making money
  • Working hard and putting effort into your job
  • Loyalty
I could go on, but what would be the point?  It will just depress me.  Those at the top are fast becoming the scum of the earth with a greed that knows no bounds, and a contempt for the consumer and the voter.  Does anyone in politics really believe in anything any more?  Can they tell the truth?  Can they keep their word?  Have any of them even had a real job?

Thursday, 27 October 2011

My problems are as nothing compared to what some have survived

We can all tend to get lost in our own world and forget the terrible experience and horrors that others have been through, and which make our experience pale into insignificance. How easy to become bitter after the experience of being caught up in the Holocaust and seeing how low humanity can sink, but one survivor has given us something that is truly inspiring; a vision of how we should all try to approach what life throws at us.

The Gift of Choice   -   By Gertrude Hildreth Housman

I came into this world without being asked

And when the time for dying comes

I shall not be consulted

But between the boundaries of birth and death

Lies the Dominion of Choice

To be a doer or a dreamer

To be a lifter or a leaner

To speak out or remain silent

To extend a hand in friendship

Or to look the other way

To feel the suffering of others

Or to be callous and insensitive

These are the choices

It is in the choosing

That my measure as a person

Is Determined

Things to help when you are feeling down

I went on a Wellness and Wellbeing day course at the Penny Brohn Cancer Care centre a while ago and bought a copy of their book The Bristol Approach to Living with Cancer. For some reason I went to the back page where they have a list of suggestions for the down days.

The last suggestion is to have a Rainy Day Box, a shoe box will do, and keep in it your:

 favourite music

 relaxation CDs

 humourous books or DVDs that can always be relied on to lift your mood

 a favourite food treat

 letters or cards that you enjoy reading to support you

 favourite quotations

This is such a simple idea, but is one that could have such a huge impact. When I get down I don't always know where to go for things to help inspire me again, so to have them all in one place is a great idea. However, in all honesty, I don't think the food treat would be there most of the time as I would have decided to have it even on a sunny day!

By coincidence I was given a Memories box and I was wondering what I could do with it as memories also have a negative feeling about them, but things to inspire and comfort is a much better idea. I think I will give it a try, and maybe putting it together will also be a comfort and support.  More of a Making Memories box perhaps?

If music be the food of healing, play on...

It may sound obvious, but I wonder how many of us actually use music as part of our daily practice to reduce stress. Evidently 30 trials with cancer patients have shown that music can help to heal cancer patients as well as helping the patient to control pain.  I don't like to take strong painkillers, though I am forced to give in sometimes just to get some sleep or rest, as I prefer to use mind over matter and breathing techniques to control pain; and to be honest I am just so used to it I tend not to focus on it much, it is just there.  But there are times when it is good to remind myself to correct my posture and focus on releasing the pain and tension through concentrating on my breathing for a while and bringing myself back to the present moment.

I know that I don't listen to music enough these days as I gave my small music centre which I had in my 'office' to my aunt when her music centre CD stopped working. I can play the radio over the internet but I seldom think to do so.

Where I do use music is when I go to hospital for a treatment and I listen to some relaxing music, or a guided meditation while I have the treatment. That way I can take myself to some beautiful places far away from the dark, grim hole that is the chemo clinic at Southampton General Hospital; windowless and soulless. When I walk into down (ok shuffle on my Nordic poles) I also play music on my MP3 player and at times it can be really magical walking along looking at a beautiful blue sky with puffy white cotton ball clouds and listening to Vaughan Williams 'Lark Ascending'.

I have just turned on my little dock for my MP3 player to listen to some music, but it is not only music that can really lift my mood. I also have some downloads of ambient sounds of Forest and Farm sounds which can be really relaxing; listening to the birds and the sounds of trees rustling as well as farm animals. You can get them on Amazon (other downloaders are available) for about 80pence and some of them last for an hour, which is really good value. Also you can listen to a sample before you buy so you can decide whether it is your 'thing' or not. Right now I have the Ambient Farm Sounds and some music playing so it is rather like an outdoor concert!

Monday, 24 October 2011

Orthopaedic news

I managed to find my way to the orthopaedic at the Royal Bournemouth General Hospital on Thursday.  Was called in to see the surgeon about 20 mins late and after a brief chat I was sent off for another x-ray of my left hip as the scans and x-ray that I had done a couple of months ago had not been sent through.  I had written copies of the reports, but he wanted to assess the state of my hip and make sure that the problem is only caused by osteoarthritis and not bone mets.  Evidently that dictates which technique they will be using for the hip replacement, whether they can use ceramic or have to use a kind of cement to hold it together, as they did when my right hip was replaced.

The wait for the x-ray was about 30 mins, then I booked back in to the orthopaedics out-patients and was called in to see the surgeon again.  He said that they could offer me an injection but that would only last a few weeks or months and then I would be back to my present state.  If it wasn't for my Stage IV diagnosis I would probably go for this option as it would delay the need for a hip replacement.  However, I don't potentially have a long life expectancy so I won't have to worry about the need for a replacement of the replacement, so I am just going to go for the other option of a hip replacement.  I am down to have it anytime, and I am prepared to be called in at short notice so I will be packing a bag so I will be ready to go.  I was able to have part of the pre-op procedure done while I was there, with a form to fill in and a "beautiful" ECG which is good to hear.  I gave them a copy of my print out of the blood test results that I had done on Monday 17th to save my poor little veins.  I will have to go back for more pre-op but at least I am on the way.

I got home today after spending the weekend at Eastbourne and I have been doing way too much walking.  I didn't get much sleep last night because of the pain in my hip and sleeping on a harder mattress; and that despite taking some co-codamol.  I have thrown caution to the wind today at did some walking near Beachy Head, and stopped at Chichester on the way home and had a look around the cathedral.

Sunday, 23 October 2011

Oh I do like to be beside the seaside...

Greetings from sunny Eastbourne in West Sussex, the London and County Pub on Terminus Road to be exact.  It is a Wetherspoon pub and so has Wi-Fi.  I have just enjoyed a Portobello mushroom, chickpea and pumpkin seed roast and am finishing off a mug of rather strange Green Tea.  Have netbook, will travel.

I am having a veg out day after spending yesterday at Battle and paying my respects to Harold at the site where he fell in the Battle of Hastings in 1066.  William the Bastard (or the Conqueror) founded an abbey on the site of the battle and a town grew up around it, surprisingly called Battle!  Luckily the battlefield is not too big and I am very pleased with myself as my Nordic walking poles and I managed to make it round the battlefield, though at one stage I was beginning to wonder how many more rough steps there would be, and I really was beginning to think I had made a huge mistake.  It was a really lovely sunny, crisp October day and only 8 days after the 945th anniversary of the battle.  There were still flowers around the site of the High Altar of the Abbey which is the traditional site of where Harold fell.  Actually being at a site really gives you a feeling of what it must have been like, especially going down, and then up, the hill which had been flattened to may way for the Abbey anyway.

I am not exactly a Bucket List person.  I don't have anything written down, and I don't necessarily have a priority list either, just when the opportunity comes along I make sure I use that opportunity, rather than letting it pass.  1066 is possibly the most momentous date in English history, as it meant a sudden change in the entire power structure of the country.  So maybe for me cancer is my 1066.  Nothing will ever be the same again, and I know that I am a very different person today than I was when I was diagnosed 4 years ago.  When something like that happens there is no way that you can go back to the way things were.  You cannot undo the moment of victory that the cancer had, the scars from the battle that proved it has such power, but at the same time you do not have to capitulate and give in.  If you can find a way of connecting to yourself and what you really need in life then ultimately you are the winner.  For me the things that I need are fairly simple as life is lived in each individual moment and by definition they are ordinary minutes, but minutes that have meaning.  Life for most of us are not made up of moments of fame; most of us will never make it to 5 minutes, let along 15 minutes of fame but to be honest that is fine with me.  Looking out over the English Channel, which is right outside the hotel where I am staying, and seeing the sun and the waves is more than enough to make a special moment for me.

Wednesday, 19 October 2011

At last, an orthopaedic appointment

Eight weeks after my oncologist agreed to write a referral for the problems with my left hip I now have an appointment tomorrow morning at 9.20 at the Royal Bournemouth General Hospital.  It might have been quicker if my GPs surgery hadn't just scanned the oncologist's letter and the scan and x-ray results and done nothing about it for 5 weeks; four weeks because it had never been read, and one week waiting for my GP to be at the surgery.  Five weeks despite the oncologist mentioning the impact this has been having on my quality of life, my limited life expectancy, and asking this to be done as a matter of urgency.  But then my GP is the queen of 'come back when things get worse' - pardon?  HOW much worse?

Anyway, I have to admit that I am a little nervous about tomorrow.  I don't know the RBGH at all, though I drove past it nearly everyday during the three years I was at Bournemouth University 2002 - 2005, but I am hoping that the experience will be so much better that Southampton General Hospital.  I get stressed out even thinking about that place and yesterday ended up spending 7 hours there waiting for a 10 minute slot to see the oncologist and 30 minutes to have an infusion of Zoledronic Acid (Zometa).  Not only were things already chaotic, but the oncologist forgot to send through the prescription for the treatment, which wasn't realised until 5 hours after I had seen him!  Grrrr.  I can feel the blood pressure rising.

I need to be able to approach a new hospital as a totally new experience and leave behind the negativity that I feel for Southampton.  I am also thinking about changing my GP so I can have a completely new medical team, and if I like Bournemouth I might move my cancer treatment there.  Not sure what the facilities are like at Bournemouth, or whether I would still have to go to Southampton for some things.  I don't have anyone to go with me which might have been a good idea, but after waiting so long I was not going to pass on such a quick appointment.  I only get the letter from Bournemouth when I got home from work on Monday evening; I phoned yesterday when I finally made it from the hospital and now I have an appointment for tomorrow.  So wish me luck, and I will be taking a Teddy for support as well as a book for the wait.

Sunday, 16 October 2011

Metastatic Breast Cancer Awareness Day - 13 October 2011

Will this day make a blind bit of difference?  Is anyone really interested in trying to find ways of helping those of us with this cancer to live longer and better lives?  I have become cynical enough to think not.

One problem is the inability of the medical profession to think outside the box.  This article shows just what I mean. Oncology Professor father thinks that his son's use of alternative treatments is hog wash, but they are working for him at the moment and without the dreadful side effects of conventional treatment.  But for the medical profession they are not proven to be effective because there haven't been trials.  What about the trials that have bought and paid for my the pharmaceutical companies to show that their products work?  How accurate are these and what do they actually prove?  Or are they just a marketing tool to push product?

Cancer charities attitude to secondary cancer.

I got home late last night after two days at the Macmillan cancer voices conference at the Hilton London Gatwick hotel.  I feel a mixture of huge enthusiasm and sadness that the conference is so much about survivors and what happens after cancer treatment.

If anyone has actually read this blog, or noticed the title, I have Stage IV breast cancer - this is considered incurable and my hospital is only giving me palliative treatment with a view to easing symptons.  My cancer is ER+ and HER2+ which is supposed to be one of the more agressive forms and the average survival after diagnosis is 3 years.  I was diagnosed in September 2007, although they didn't finally 'discover' that I had mets all along in January 2008 (so try listening to the patient...) when I was 47 years old.

Cancer charities raise money on the back of people like me, and by using the fact that so many thousands of people are dying of cancers of all kinds.  When they get the money what do they spend it on?  Admin, prevention, education, raising awareness, research to prevent cancer and stopping it spreading in the first place.  But what about us, the people whose cancer has spread and are considered to be incurable?  How big a bite of the cherry do we get?  A couple of years ago I asked Cancer Research UK, one of the biggest cancer research charities in the world, just how much of the £100,000,000 a year they invest in research was send on researching metastatic cancer; the kind of cancer that kills.  The answer?  4%.  Yes you did read it correctly.  FOUR percent.  That is not much of a bite, and when it is it a bit of the pit, not the juicy flesh.  This is actually about the average anywhere in the world.

There were times at the conference I really wanted to shout out about this.  What about the people who are likely to die from this disease?  Why is everything seemingly about supporting people in their cancer journey and 'after' their treatment.  I have a 2% chance of being alive in 6 years time.  Anyone who thinks that these are good odds please raise your hands I don't think they are too great either.

Not one of us who are Stage IV want to burst anyone's bubble of confidence that they will survive, but we also should not be ignored and not spoken about in hushed tones.  At one of the workshops a lady asked what secondary cancer was and I had to explain to her.  It turned out that she was about to start working for Macmillan, a cancer support charity which is 100 years old this year, and she had no idea what secondary cancer is.

The enthusiasm came from some of the grass roots initiatives that they are trying to start up of support being available in local communities to help with taking people to hospital and doing shopping, gardening etc.  Sounds like a really great idea, but a massive task.  I know that there are changes going on concerning the website and their search for volunteering opportunities doesn't seem to be working at the moment so I can't have a look at what they have going on around here at the moment.  The trouble is that a lot of these things are based in cities and not small towns.

Monday, 10 October 2011

Making some progress with getting sorted

I finally got round to asking a neighbour, who is also a professional gardener, if they would give me a quote for clearing my front garden.  It has been pretty deserted for about 9 years now and is a complete mess with small trees growing in the lawn.  It would be so great to feel as though I have a bit of control over at least that part of my world.  I just want it cleared and a new lawn laid as I should be able to manage to mow that if I get a decent mower.  The lawn area wouldn't be too big either.

If I finally start to get that sorted out then I would have to get around to sorting out some of the other things that seem to evade my attempts at control.  I seem to endlessly move things around, and although I do have occasional throw outs it never seems to have much of an impact.

Of course one of the problems is that I feel guilty about getting rid of things, especially having been raised by parents who seemed to have the motto of "keep it, it might come in useful".  I have been slowly weeding things out and taking books down to the Community Centre in the town, or to the local Oxfam shop which specialises in books; and I did make a long list to sell on Amazon, but I got no further with that.  I don't really want to let them go.

I do feel that getting rid of clutter is quite liberating, but I also look at it from an environmental standpoint at well.  These things should be reused, but who would want my old stuff.  With clothes, at least, a charity can sell them for rags if they are not good enough to sell as an item of clothing and I would much rather things were used again than go to landfill.  I can be a rather obsessive recycler at home, and I also end up redirecting rubbish at work if it can be recycled.  I have even been known to bring it home to put in my own recycling bin.

Humans have had such an enormous impact on the world.  What people think of as being a natural landscape has most often been influenced or created by humans.  There is no where in Britain that is really natural, and the area that I live in is completely formed by human use, and over use, of the land.  Why do people think that they have the right to continue to abuse this planet?  Do we really need a lot of the things that we have.  Do we really need a lot of the things we want.  For me life should be about having the things you need, and occasionally having the things that you want.  I still have the 'fridge that my parents bought around the time my older brother was born and furniture my father owned in the 1920's and 1930's.  I have photos of houses he had decades before I was born and I still have some of those pieces.  I don't need this year's in colour for a sofa after all; and let's face it a 1950's style 'fridge is actually very fashionable.  Keep it long enough and it will come back into vogue.

Thursday, 6 October 2011

Time ...

I was just browsing something to do with metastatic breast cancer and somehow I ended up looking at some videos on YouTube that Michelle Ann posted.  I had to give up looking at them because they made me sad as Michelle Ann was a friend through a forum and she died a few weeks ago of this disease. 

How long before I become one of the statistics of breast cancer?

Sometimes I wonder if I am fooling myself by thinking that I could have a future.  I am not sure where it is, and I am not sure that I really want to know where life is going to take me.  Some people crave fame, travel, excitement and wealth.  Personally I am content to just bumble along in life and concentrating on the little things; the little moments.  I have pretty much everything that I want at this point in my life, though these are not the things I dreamed of having.  I wanted to be married, have children but these are things that will never be and over time I have come to accept this.  Why waste your life hankering after something that you can never have?

Time is something that we all think of as endless, but for each one of us it is the thing that confines us more than anything else.  Not enough time in the day, didn't sleep long enough, no time to do certain things; we measure our lives in time ... how old we are ... how long since ... I have to be at work by ...  Why?  Time is only limited if we allow it to be that way.  When did the future become more important than the present?

Carpe Diem - if not now, when?

Monday, 3 October 2011

Where does the money actually go?

I just read a thought provoking article about giving to charity, and considering that we are at the start of Pinktober and the mad rush to buy anything pink to raise money for breast cancer charities I wanted to put some thoughts down on 'paper'.  I am coming to the conclusion more and more that 'charity' it now just a marketing industry with the main aim of raising money to fund well paid jobs for a few. Doing charity work used to be a vocation, and still is for the millions who volunteer, but what about those with nice big pay cheques who are making such a nice living out of it all. Those who worked for charities used to be paid less than those in a for-profit organisation because they were trying to maximise the money they raised for the cause they were concerned with, but it almost seems to be the other way around now. Come and work for this charity and get paid lots of money to 'grow' our business ... NO you are a charity NOT a business. Do what you are supposed to do, what you claim to do ... you are not working in The City or on Wall Street to make money for yourself, you are working for a charity for the the benefit of others.

Why are there so many different charities all with the same aim? Think of the money being wasted on salaries for those doing the same job in each charity. I think it was a Canadian cancer charity which was criticised recently for spending more on fundraising than it did on research ... and you can be sure that this is not just a problem in this one charity. What about the millions they all spend on Branding, and re-Branding themselves every few years. WHY? Who gives a damn if they have a jazzy new logo? Why buy Christmas card where pennies from the £'s or $'s that they cost to buy actually goes to the charity funds? I'd rather buy cheap commercial cards (or make my own) and give £10 to a charity as in the end they will get much more. Think how much these cards actually cost to produce, then think who is getting the profit.

'Charity' sadly seems to be learning more from the Banking industry than any true and pure understanding that I have of what charity should be. Occasionally I get to help in the League of Friends shop in my local hospital and they do a 25% discount for helpers - why? I want to GIVE to the cause, not take advantage of it to save myself money. That said, the League have at least learned from past mistakes. Years ago they bought a scanner for the hospital and gave it to the NHS. The NHS then decided that it was too good for our little community hospital and moved it to Southampton General Hospital, the big acute hospital in this area. Now the League of Friends only loan equipment so it benefits those that the money raised is supposed to benefit. My little hospital now has an MRI scanner which is better than those in SGH and it will stay here.

Charities have to remember that they should be keeping their word, and as an advert says, making sure it "does what it says on the tin". If you are fund raising for cancer research, then fund the research, not marketing jobs and business consultants.

Sunday, 2 October 2011

Rambling thoughts...

Advice is so much easier to give than follow, that is why you give it away! We all deal with things in our own way, and we have to find that path for ourselves. We have all walked away from a situation thinking 'that's ridiculous', but it does strike a nerve and eventually makes us do something really dangerous like get our two atoms of brain cell to make a single spark of intelligent thought. Then the answer can seem so obvious you wonder why you hadn't thought of it before...

I always think that writing something down can really help you sort out your thoughts. It may never go anywhere but the bin, but having put them into some sort of order can give you time to think. Also with writing, especially on a computer where you can play around with it, you can leave it for a while and return to it when you are more settled. Often I will then re-read it and wonder what the heck I was talking if I can't understand it how can I expect others to!

We all think that our problems are the worst, precisely because they are OUR problem, and we are experiencing and feeling the effects of those problems. We live with those thoughts in the wee small hours and all day as they press down on us and we have to find ways of releasing that pressure without alienating everyone else. Depression, in my opinion, is a coping strategy but also a cry for help by hoping that others will notice the depression and reach out to you; but it is a coping strategy that cannot be successful in the long term because it is avoiding dealing with reality, and I have been doing that for over thirty years! Having cancer made me realise that I am the only one who can change my life for the better. There is no magic pill which will take it all away and make everything into a fairy tale, pills can help and support you, but only your actions can make things better. That takes work and I have had many failures along the way, and hit many brick walls at high speeds trying to do so. But depression is a natural thing which I have come to embrace as a way of letting out the negative and sad parts of my being but I finally feel as though I have some control over it and it no longer rules my life. As with my cancer I have it, it doesn't have me any longer.

It is difficult to look back and realise that you have wasted your life and know that you don't have time to be able to make a real difference.  But there again does it really matter.  I can't go back to being a teenager and tell myself how lonely my life would be because of choices I made when I was 14, because I am not sure they were really choices.  It was the only way I could survive at that time and in reality I have done the best I could do at that time.  You can't live with the airy fairy idea that if only I had done that everything would have been so much better...newsflash!  Life is not Hollywood, no one shouts 'cut' lets do that again, until you get it right.  My life is what it is and in all honesty it has not had much of an impact on the world.  I am a worker ant type, not a strutting peacock, brave lion, sleek cheetah; I will not be remembered my many people, but then maybe that in itself if a good thing as I hope I haven't had that negative an impact on anyone either that they would have cause to think of me.

A cancer diagnosis may be Stage 0 and never come back, but that diagnosis can still be the most devastating and profoundly life and soul altering experience that will ever happen to that individual. Who amongst us would ever want them to know what a Stage IV diagnosis is like. There is a difference between possibly and probably, and it is one which is what makes all the difference. Stage 1, they might possibly have a recurrence and die, Stage IV we will probably die.  We all still have to deal with our lot in life as best we can at the time, I just like to think I am making a pretty good job of life at the moment...

Thursday, 29 September 2011

Finding my own treatment strategies

Polution of one sort or another is all around us, and there are probably few places on the planet that don't have direct polution problems.

I think everyone has noticed how those at the top of companies and banks think only of profits and bonuses, and what is in it for them.  By using chemicals that are proven to be damaging to the environment and dangerous to people simply because they can make more profit is just plain immoral.  In America there is a lot of publicity about the fact that the Susan G Komen for the Cure which is just about the biggest breast cancer charity in the world and which claims to be funding research into finding a cure for breast cancer.  They have just launched a perfume which contains chemicals which are known to be a health hazzard, and which they are not declaring on the labelling!  Amazing.  Are these people completely insane?  Raise money with a product which damages health.  The more you look into the whole cancer industry the more you have to question the motive behind all of this.

There are non-toxic traditional medicines which have been proven to have anti-cancer properties which have been banned by the EU, and the USA looks to be following in their disgraceful footsteps.  These are precisely the sort of things that governments should be funding research into, and encouraging their use as a first line of treatment.  They are NON-TOXIC and easily tolerated by patients, but instead these patients are used as guinea pigs for pharmaceutical companies who produce toxic drugs which damage patient's health more often than they produce positive results.  Many chemotherapies produce side effects which need to be controlled by more drugs, which cause side effects which need to be controlled with even more drugs...and so it goes on.  They claim that Vitamin C given by IV is dangerous and that this vitamin shortened the life of Linus Pauling, a strong proponent of the efficacy of Vitamin C.  The double Nobel winner died at the age of 94!  Shortened his life?  That I should live so long!

Of course these traditional medicines and treatments are from naturally occurring plants, and so can't make big bucks for the pharmaceutical industry.  They would be cheap to produce and easy to give, which is another big draw-back (NOT) when the NHS is struggling with the burden of the cost of cancer treatment, as are all countries.  When these pharmaceutical drugs go generic they can be produced for 20% of the price in some cases, but the biggest pharmaceutical companies make profits that dwarf the top Fortune 500 companies in America.  Please note that these are Profits, not research and development costs.

Yet the medical industry insists that the only viable treatments for cancer are the Big Three of surgery, chemo and radiation.  When it was finally recognised that I had metastatic breast cancer (cancer which has spread and is considered incurable) I was alarmed why I was told that the only treatment offered to me after the surgery to replace my hip (destroyed by cancer) was hormone treatment, and the aim would be palliative, not curative.  I was 47 years old.  This made me go out and find my own sources of hope and I was 'lucky' that I knew there were other ideas out there because of a friend who died of stomach cancer because of the information that she had been sent by other friends.  I am now grateful that I was not put on chemo because it was not considered to be "appropriate at this time".  What I found was that there is a mound of scientific research and evidence of how these things work and how supportive these strategies are of the body as it tries to overcome the cancer.  There are no guaranteed treatments, but there are those that are kind to the body. 

So why will conventional Western medicine not even consider these strategies?  Since when does science have all the answers?  Science has given us so much, but it has also given the world the nuclear bomb, the arms and biological weapons which have killed millions, the chemicals which are contributing hugely to the explosion in the incidence of cancer in the modern world.  The Holocaust would not have been so destructive if it hadn't been for the gas that was developed which murdered millions.  We truly do not need more ways of destroying the human race or the planet, we are doing a good enough job already.  Surely chemo and radiotherapy should be held in reserve when all other treatments have stopped working rather than being used first, so that when patients in despairation turn to the 'alternative' sources when their body has already been ravaged beyond repair by these toxic treatments.

Another part of a supportive strategy that is missing is support in dealing with a diagnosis of incurable cancer.  The impact of being told that there is no cure, no hope of survival in the long term is enormous and yet the mental ability to deal with this is a huge part of enabling your body to work against this disease.  How often do we all project and prophesy what will happen, only to see it come true?  Being about to come to terms with my disease, and being able to accept that cancer is a part of my life, and will be for the rest of my life no matter how long that is, has been the hardest part of this journey.  Taking the power to control your life away from cancer and returning it to yourself is not easy, but I truly believe that I am now happier and more content than I have ever been in my life.  The power of my heart, mind, soul and personality is greater than the disease.  Cancer does not have me, I have the cancer, it is something that I am LIVING with much more than I am dying from.

Wednesday, 28 September 2011

Think before you Pink

Who really makes money out of the Pink Ribbon industry?  How much actually goes towards research?

The silly season is about to explode on us with Breast Cancer Awareness Month in October.  So many things will be pinked, and will promise to donate 'x' amount to a charity, but note that many of them will say that they will donate a maximum of £xxx to that charity.  So if the amount that they raise from the sale of those pinked products is more than that they will be pocketing the difference as well as all the money from the boost in sales from those who think they are supporting breast cancer charities and research.  In fact I have become rather jaded about charities as a whole and cancer charities in particular.  I would love to feel that the money I give is really achieving something, but I am not convinced that it is.  I asked Cancer Research UK how much of their research budget was spent directly into research into metastatic cancer of any sort.  It was about 4%!  Metastatic cancer is the cancer which KILLS, this is what people die of and they direct 4% of their research budget to it.

I know that it is wrong that people automatically think that cancer is a death sentence, it is not, but there again too much of the breast cancer charity 'industry' likes to portray it as a curable form of cancer which is all about 'survivors'.  The likelihoood that I will survive it for another 6 years is statistically about 2%.  I am a metavivor, a term coined by an American BC website/charity, which more accurately describes my situation.  I am living with metastatic (or secondary) cancer.

For thousands of people it is about living with breast cancer rather than surviving a long time with no evidence of disease.  It is about quality of life and knowing that you have to make the most of each day at a time.  The fact that there are companies that only see this disease as a source of profit is wrong.  Is this what Western countries are really about - profit?  Destroying the world...for profit...destroying people's health...for profit...having more and more things which we really don't need.  We should have the things we need and occassionally have the things we want, and not the other way round.

Wednesday, 21 September 2011

Seeing it in black and white

My left hip has been deteriotating a lot recently and at the chemo clinic yesterday I got a copy of the referral letter that my oncologist has sent to my GP.  In it he states that "she has a limited life expectancy, it would be appropriate to push for this to be done as a matter of urgency".  Gulp.  That gives me a cold feeling actually seeing it in black and white.  I realise that he is trying to get things moved along more quickly, but it is still spooky.  At least this time the problem is only osetoarthritis in a hip deformed from birth, it is not the really serious problem that did for my right hip, so there is some good news in this.

I don't think of my life in terms of how long I have to live any more.  My uncle died earlier this year at the age of 96, my aunt is 87 (siblings of my mother) but these are just numbers.  Does it really matter that I have a limited life expectancy?  No is the answer.  I know that my life has not been a sparkling 'success', I am not famous, beautiful, wealthy and I haven't really achieved much in life, but I rather think that my life has been a success in a different way.  I have done the best that I could at any particular time which I think is more important than some of those things listed above.  At the Olympics who is really the greater success; the person with a gold medal run in an average time for that competitor, or the person who came last and smashed their personal best by seconds?  We may remember and hear of the person with the gold medal, but I think the one who came last will be able to look back on that day with the greater satisfaction of not only having made an Olympic final, but also of having done better that they had ever done before.  It is the one who finished last who will be able to look back on that day as a truly golden moment in their life.

I don't have any expectations in, and of, life and as such I don't think that I have any feeling that there are things that I should have achieved, and didn't.  I hope that a few people will remember me fondly when I do manage to drop off my perch, and I wish to make it clear that I have no intention of doing so for quite a while.  After all there are a lot of people who could benefit from my opinion as well as my annoyance factor.  It is kind of like, if I haven't done it by now maybe I was just never that interested in doing it.  There are places in the world I would like to visit, but there are far too many places I haven't seen in my own country to worry too much about the rest of the world.  There are times when I am driving in the countryside that I just wonder why people want to be anywhere else in the world.  I love this country, and that is not in a jingoistic way, I just feel that it is the right place for me.  I even love the weather.  After all if you don't experience the bad then you can't really appreciate the good days.

Sunday, 18 September 2011

18 September 2007

It was 4 years ago today that my cancer journey became a reality.  It was 4 years ago that my left breast was removed.  I don't normally remember dates that well, but it is the anniversary of my mother's birth and today she would have been 90 years old.

I wasn't really affected by the loss of my breast.  After all I am not married or in a relationship, and as my mother had breast cancer when she was about 53 and had a breast removed so I knew what I would look like, it wasn't a shock.  I did take a photo of my breast the morning that I went into the Princess Anne Hospital in Southampton, and for some reason I have kept it.  It took a while to get used to it not being there - trying to wash it in the shower to find a flat chest on that side, and I sometimes feel as though there is an itch near where the nipple used to be.  I guess it is a bit like having a limb amputated, you still get ghost sensations where it used to be.

I was supposed to be fine after the surgery and adjuvant chemotherapy.  I was told a 90% chance of being alive in 10 years.  If they had listened to the answers I gave to their questions they would have realised that my diagnosis was not Stage 2, but was Stage 4 all along.  I suppose if they had realised that they probably would not have done the mastectomy at all, because when you are Stage 4 you are really not considered to be worth the effort or expense.  I can live with the idea that I am not worth a great deal of expense, but I can't live with the feeling that I am not worth the effort.  The effort I want is information and open mindedness on the side of the medical profession.  I want to be able to access information and then make up my own mind.  I am reading about Vitamin C at the moment, and one of the claims against it is that it shortened the life of Linus Pauling the double Nobel Prize winner who advocated its use.  He died at the age of 94 for heavens sake.  Freedom of Information does not include the medical profession.  They seem to want to control and dictate the treatment options of their patients.  After all I am not a laboratory mouse.

Saturday, 17 September 2011

Looking for something to do

I have been looking at the evening courses that are run for adults this academic year.  There are a few Saturday / Sunday short courses that sound interesting, but I don't think that any of them will go very far.

I have been thinking about delving further into Alternative and Complementary Therapies.  I use several Alternative therapies as part of my strategy to deal with my diagnosis and also with life in general.  I have had depression since I was a teenager and being told that I have Stage IV breast cancer which they were only going to treat with palliative strategies was not the greatest of news.  The feeling of anger and frustration that it had been allowed to get that far despite there being evidence that I might have cancer in 2002, five years before my diagnosis.  I personally feel that the lack of support for those with and 'incurable' cancer is sadly absent.  A lot has been reported about the low survival rates in the UK, and I think this is an important factor.  Sorry we can't cure it, we aren't going to try, we will only give you palliative treatment to ease symptoms.  Now go away and die quietly. 

Where is the encouragement?  Where are the coping strategies to deal with this?

I was lucky that I was having Cognitive Behavioural Therapy at the time to deal with the depression I had for so long, but that was disrupted for longish periods because of various things.  I had started to have acupuncture in the four months between the Primary and Secondary Cancer diagnosis and have continued with it for nearly four years now.  I have a treatment every two weeks which helps to keep my left hip moving, and also balances me.  Justin also works on points on the front and back of my wrists which have really helped with my mood.

It has been a struggle to find some meaning to being alive with this diagnosis.  I have always rather struggled to find a meaning in life and a place in the world and while CBT really helped it still didn't give me a clear route to follow.  There were other pieces to be put in place.

One piece of the puzzle was Mindfullness, a form of meditation which is similar in its approach to CBT.  The course that I am considering is to become a meditation teacher.  I would like to be able to go into this more deeply and also to be able to hand on these strategies to others so they can better deal with things in their lives.  Above all it will give me something to focus on rather than just drifting though; getting up, going to work, coming home, checking my internet groups, going to bed, getting up...  I have been feeling more and more that I need to give something to the world.  To contribute my own drip into the ocean of humanity and society.

What I would most like to do is to find a way of helping and supporting those in a similar position.  I help administer a small forum in the UK and I belong to a big site that is based in the US but I don't know people locally who I could have a close connection to.  Maybe this is because I don't have children and live alone, I don't have people to give to directly and my immediate support group is made up of Teddy Bears who have managed to dry out after the crying phase of this journey.  I don't focus on the future, but I still want to grow and learn.  I am not dead yet.

Friday, 16 September 2011

In Limbo

The end of another working week and already I find myself looking forward to half term!  That is one of the great things about working in admin in education, the holidays.  The problem is that I am not sure whether to really plan anything.

Since cancer destroyed my right hip, resulting in a total hip replacement in January 2008, my left hip has been deteriorating.  It has always been slightly deformed and now has osteoarthritis.  Recent scans have shown that it is now just bone on bone articulation and the deterioration seems to be excellerating.  The depressive side of me thinks - your cancer is incurable so they won't want to do anything as it will be a waste of money, and because I am not swollowing painkillers like Smarties they don't take me seriously when I tell them I have a problem.  Trouble is that I have been right every time, and they have been wrong about my health.  It seems, however, that I might have to go through the hoops of physio etc despite having had scans which show the state that it is in - sigh.

I want to be able to still do things and get out and about, but I can't really make any plans as I have no idea when / if they might actually do something.  I think I am just feeling frustrated with several things that don't seem to be going well at the moment; but it is the end of the week and I am tired, which doesn't help. 

It is not that I plan ahead that much, but it is nice to have something to look forward to, and nice to have the idea that there is a future out there somewhere.  I love the saying 'yesterday is history, tomorrow is a mystery'.  Over the last couple of years I have been working on letting go of the past, and not worrying about the future.  What is the point in worrying about the future and wasting what is happening right now?  I can not actually experience the future, until it becomes the present.  I am not alive in the past or the future I am alive NOW and I need to make the most of it.  That does not have to involve doing something extraordinary every day, and I don't have a Bucket List as I think that having such a list would make you focus on things that I haven't done, and in some cases things that I am not likely to do.  Just living each day and doing the best that I can do each day is the only way to make the most of life. 

There will always be days when I achieve more, feel more motivated and when life just seems to be fine.  There will also be the opposite kinds of days, but then that IS life.  Life is about going to work, doing the washing up, doing the shopping, washing, cleaning...but that doesn't make those days any less valued.  Without the ordinary how do we recognise the extraordinary?  I can't imagine living in a country where the weather is the same every day as I love the English weather.  There are those wonderful days, like yesterday, when it is warm and sunny; the sky is a perfect cloudless blue that can stop you in your tracks.  If it was like that every day who would notice the beautiful sky?  Why do people complain about rain?  This would not be a green and pleasant land without the rain, we would not have water to use without worrying about how much we are using without the rain, crops would not grow without the get my drift.