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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.