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Thursday, 30 August 2012

Petition for more research funding

I have started a petition calling for a fair share of the research funding to go to research into metastatic breast cancer.  I intend to send it to Cancer Research UK who once told me that they devoted about 1% of their £400m annual research budget to research into any kind of metastatic cancer and other organisations in the UK who fund breast cancer research.  As 30% of those who are diagnosed with breast cancer will progress to having metastatic, Stage IV breast cancer the research programme should have 30% devoted to metastatic disease.

http://www.ipetitions.com/petition/fair-research-funding-for-metastatic-breast-cancer/

Please sign it and pass it on; or pass it on even if you do not feel that you can sign it.

Finding treatments to deal with metastatic breast cancer will help not only those of us with this stage of the disease, but also those with early stage breast cancer because it will help to relieve the stress and fear of a progression of this disease.  It may also allow them to embrace and accept those of us with MBC which many of us feel is not the case at the moment.  We are their worst nightmare. 

I can understand the reluctance of the Pink Movement to acknowledge us.  We are not a part of the success story which is the image of breast cancer; not a part of the survivorship which is so celebrated as a corner stone of breast cancer.  There are so many people who think that it is a curable disease but many early stage patients know that there is a Stage IV which is incurable and is something to be dreaded and feared which in turn leads to our sense of isolation.  We are not failures.  We are simply living with breast cancer every day for the rest of our lives.  If you sign the petition it may help us to live longer.

Wednesday, 29 August 2012

My ambition is to be Pink

I know that it sounds a bit strange to want to be pink, even if it is my favourite colour, but I think that it is actually the ultimate ambition of all of us who have metastatic breast cancer to be completely accepted and welcomed as part of the Breast Cancer Community; as represented by the colour Pink.

The problem of being Pink, for me, is that it has come to represent survivorship and, through Pink Washing, the corporate greed of many companies and organisations who see the colour and its associations as a way of making profit whilst enhancing their image.  After all what are the risks for a big company to produce some pink products to sell in return for a small donation for each item sold?  Worst still there are companies which only tell the buyer in the very smallest of writing that there is a limit to the amount they will donate, but not to the number of items they will sell.  I make cards which I sell for £1.  I could pledge to give £100 to a charity and then sell 500 cards and keep the other £400 profit while advertising that I am selling them for charity.  Hmmm.

I want to be pink because I would like to feel accepted into a community which perports to represent all of those with breast cancer ... but it seems to be as long as you don't embarrass them by having metastatic BC which means you are unlikely to be a 'survivor', or worse still you are a male of the species with breast cancer.  If we think that as metavivors we are shunned by the Girls in Pink then what about the Boys in Blue?  You try finding support, information and acceptance into the community when you belong to the 'wrong' gender.  In part this is a problem that is not helped by men who don't want to 'come out' about their cancer; and it seems to also be part of the problem with getting more done for prostate cancer - all a bit embarrassing, don't you know, and real men don't talk about such things.

It may just be the impression that we get from the main BC community, and it may be only a minority who don't feel able to accept us but they are the minority that we seem to encounter when we are told not to say we have mets at a breast cancer 'support' group because we must not upset or scare the majority.  That is the minority that would not speak to someone who went to just such a 'support' group and after saying she had mets no one would talk to her.  She didn't go again - shock!  Possibly we are being over-sensitive because we really don't want to pierce their pink bubble of surviving and life after cancer.  We genuinely do want them to be survivors, we don't want them to join us, but we do want them to accept us and by accepting us to also support us.  Mets are not catching.  They may even see that we have a relatively 'normal' life.  Four and a half years after my mets diagnosis I still work for a living, I can still contribute to society, I am still a living person.  So while I live I still have ambitions, and one of them is to be Pink.

Thursday, 23 August 2012

So what is happening on Metastatic Breast Cancer Awareness Day 2012?

I have been trying to find out what is happening for Metastatic Breast Cancer Awareness Day on 13 October 2012 in the United Kingdom.  The answer seems to be a big fat nothing.  The charity Breast Cancer Care did organise something for last year, but it all seems to have been forgotten, as though we have all gone away - i.e. died.  The small amount of effort that they did put in seems to have fizzled out and it is back to service as normal for Pinktober.  Pink ribbons and survivors.

Is anyone actually interested in our existence, except as a slogan for raising money for breast cancer charities and early-stage awareness?  'Over 11,000 people died of breast cancer in the UK last year' so give us your money so we can educated people about the symptoms of breast cancer and fund research into preventing the spread of breast cancer.  Just one problem with that - WHAT ABOUT THOSE OF US WHO ARE ALREADY STAGE IV?  Sorry to shout but for those 11,000 people finding a way to stop mets happening was just not much use; it has already happened and now they are dead.  What we need is an effective treatment or cure for the cancer when it has spread.  This is the type of cancer which kills, but the focus is all on the survivors who, on the whole, just don't want to acknowledge our existence because we are a reminder of what their future may be ... especially as there is no effective treatment or a cure.

So what will I be doing on 13 October?  I hope to be at the Macmillan Cancer Voices conference near London, and one of the sessions I hope to do is about advocacy.  The other is about campaigning for changes to my local NHS.  However, I have tried writing to the Daily Telegraph and the Daily Mail about MBCA Day but I have not had a reply, but I didn't really think they would take any notice of me.  I may try my more local papers; the good old Lymington Times, or the Southampton Echo to see if they are doing anything to support this day.  The real shame is that one thing that I have found is that it is very difficult to get people with MBC to be willing to support others with the disease.  Maybe it is just because I really don't have much of a life so I am interested in helping others deal with all of this and trying to get information, advice and guidance to others.  So maybe it is me who ought to give up and accept that a lot of other folks just aren't interested?

Wednesday, 22 August 2012

Treatment day.

Treatment day today so it was off to Oakhaven Hospice to have my i.v. infusion of Zoledronic Acid )aka Zometa).  I have been having this every four weeks since February 2008, except for a few months at the beginning of this year because of my hip replacement surgery.  In many ways my life revolves around these treatments, and it was the reason I had to get home at the beginning of the week, blood test on Tuesday, treatment on Wednesday.  The infusion only takes about 15 minutes to go through, but in total I was there about 45 minutes to give time for the canula to be put in, saline put through to flush my veins before and after the medication is put through, and of course removal of the canula.

This is the third treatment that I have had at Oakhaven and it is soooo much nicer than having to go in to Southampton General Hospital and see the oncologist and then wait and hope that my treatment came through somewhere near on time a couple of hours after seeing him.  At the moment I only need to see the oncologist every three months and have the treatments done locally to me.

Some people think that a Hospice is to be avoided at all costs because they are all about the very end of life, however this is only a part of their function within the community that they serve; but a Hospice is about so much more.  I have used their facilities before, and my first contact was when I was going through a very difficult time and I had reached the point of considering suicide because I thought there was absolutely no hope that I could have a life worth living.

A metastatic cancer diagnosis is not an automatic and immediate death sentence, but I was given no encouragement to be able to think any other way.  I think it was the help from the counsellor at Oakhaven and sheer cussed detemination, combined with finding Jane Plant's book ' Your Life In Your Hands' and Bernie Seigal's 'Love, Medicine and Miracles' that finally allowed me to see that there was a way through the 'fog of war' and into the fresh light of a new and another day.  It was a long and painful journey and the Hospice really supported me and helped me deal with my situation because that is why they are there.  We do not die until the second we die and the brain stops functioning and they know that.  They are about making the most of what an individual has so that we can live life as full as possible for as long as possible.  That is one reason I like to go there for my treatments, the Hospice has more life to it than the Hospital.

Saturday, 18 August 2012

Visiting the past

I made it to Hardwick Hall today, as you can see from the photo.  It sits high on a hill with command views all around and thanks to the Cavendish's preferring Chatsworth House a few miles away it is almost unaltered from the time of the woman who had it constructed in the late 16th century, Bess of Hardwick.  In an age where women were ususally nothing more than the chattel of first their father and brothers, and then their husbands (Bess had 4) she became a woman of position, influence and wealth.  She wasn't born to this power, but to an obscure local squire and she aquired her position through a series of marriages.  The house has the tapestries that would have hung in a great house to cover the walls before wallpaper became the vogue, though their colours have faded it still makes quite an impact.  The floors are the orginal concrete and covered with rush matting, just as they would have been strewn with rushes and scented herbs when Bess lived there.  It is possible to imagine her taking her exercise along the great gallery on wet or cold days, or just walking up and down mulling over a problem.  The last person to live in the house was Audrey, Dowager Duchess of Devonshire who was widowed in about 1938 and lived then on and off until her death in 1960.  The house now belongs to the National Trust.

The Tudor period is one of the most interesting and evocative periods.  It was a time when women ruled the country through the turbulence of the Reformation, Mary's attempt to return the country to the Roman Catholic religion, and then the remarkable age of Elizabeth I.  An age when England changed more that it had in the previous 500 years, and an age which must have challenged all those who lived through it and the religious upheaval.  To remain catholic?  Become Protestant?  A Puritan?  Extremes of views that Elizabeth tried to pick her way through to maintain peace.  Two remarkable women with the same name during the same age.

Finding a path to follow for yourself is never easy, and for me it has been a constant challenge to be able to find a direction to go in.  The last few years have forced me to really focus on the way I want to go.  It is not something that anyone would ask for, but it can also be very instructive to have to focus on the here and how; to have to make decisions; to have to let go of many things in order to be able to get a grip on the reality of the present.  I can no longer just drift through life.  There are things I want to do and I now have to just get on and do them.  Visiting Hardwick Hall was one of those things that I can now mark off my 'bucket list' and I think the memory of it will stay with me for a long time.



Friday, 17 August 2012

Lazy days and cold baked beans

I am having a lazy day today.  I have just run out of energy, and as it is raining outside I decided to go back to bed and get some rest.  I like these kinds of days when I can just take it easy and not worry about what is going on outside the door.  It means that I can snuggle up and do some reading, or blogging.  It also means that as I am not going back to the Little Chef next door after the dreadful meal last night I can sit and eat a can of cold baked beans.

I love cold, organic, baked beans.  I never bother to cook them because they are so much nicer cold that I realised that I was eating a lot of them before they heated up, so why not be more envionmentally friendly, not to mention thrifty, and cut out the electricity all together.  It is like custard.  One of my favourite meals is cold soya custard straight from the box.  I have even been known to take either of these to work for my lunch if I don't have the time, or the energy, to make a salad for lunch, or the cash to buy a sandwich once I am there. 

Maybe the attraction is also that I don't have that much enthusiasm to cook these days and my relationship to food has become somewhat problematic.  If you could see me you would know that I am overweight, but that never seems to change even when I go through periods of not eating very much, which I did a couple of months ago when I became very depressed and almost stopped eating all together.  I know that this is no way to lose weight anyway, but I have other things to worry about these days.  It is more a matter of nourishment and when I go back to work next month I will have strange working hours of 2 - 7pm.  I don't like it, but I really had no other choice unless it was to give up work entirely, then I would be on my own for 99% of the week which is not good.  So I am going to have to find a new pattern of eating, and maybe using my slow cooker could be an answer.  Chuck it all in and leave it to cook while I am out, and then I can eat as soon as I get home.

Nourishment is such an important part of my approach to living with cancer.  Getting the right nourishment that is, but I have ceased to fret about it if it doesn't always go to plan.  At the moment I am away from home and without refridgeration at a relatively warmer time of year.  Therefore I can't really stack up on those foods that need to be stored in a cool environment because I just don't have access to those conditions.  Also if you eat out there are limitations on what I feel comfortable about eating, partly because I don't know the source of the food and how it has been grown and produced.  I prefer organic produce, especially on the odd occasions that I eat meat, which is usually white meat anyway.  I don't want the growth hormones, antibiotic residues and the junk food that animals are fed these days to make them grow quicker, be 'healthier' and cheaper to raise.  The same with vegetables, I don't want the pesticides, herbicides and artificial fertilizers that are used to grow tasteless, bland and nutrient free food.  What the hell has happened to our food?  Instead to feeding and nourishing us it is starting to kill us, and that is before they start to process the stuff.

Wow!  Getting off soap box and putting it away neatly, and environmentally.  But seriously folks, we all share the same planet and we are destroying it at a rate that should make your head spin if you thought about it too much.  There are people starving when other areas of the world have a glut of food and just don't get me started on the bees!

Thursday, 16 August 2012

Four years ... where has the time gone?

I did a big trip around England four years ago, at about this time of year.  It was the summer after my metastatic diagnosis, and it was supposed to be the last summer I would have to be able to get out and visit some of the places I had always wanted to go to.  It was one of those Bucket List types of thing so I could mark off some of those 'things to do' ...

Well four years later I have revisited one place which was a highlight of that trip, Southwell Cathedral.  It hasn't been a cathedral very long, only since 1884, but it was a Minster before that and the parish church of a small town on the edge of Sherwood Forest.  It was a revelation.  Somewhere that I had hardly heard of, and which I nearly didn't go to because I was trying to pack so much into that trip.  It is a gem, and the carving in the Chapter House is superb.  http://en.wikipedia.org/wiki/File:Southwell_minster_028.JPG  It was so special to be able to visit it again.  The organist was practicing while I was there.  I love the sound of sacred music in a sacred space such as a great church because it seems to be so timeless.  It is even better if there are not too many people around to break the spell of what it must once have been like in such a place.

I took my aunt back to the village where she was born and brought up in the Cotswolds last week.  She thinks that it may be the last time she will be able to revisit the place where she spent such a happy childhood.  I know the feeling.  There have been many times when I have wondered if I would pass this way again, but I no longer find it difficult to think in such terms.  Does it really matter if I never come this way again?  After all familiarity breeds contempt, or so the saying goes.  Nothing can compare to that first moment, the excitement of seeing something for the first time.  These are the images that say in my mind, though sometimes they are also preserved in a photo like the view of the north Devon coast near Lynton that I have as my screen saver at work.  It takes me to that warm summer day with a cooling breeze and looking at the waters of the Bristol channel and the ling casting a purple haze on the ground.  I may not return but I have brought it with me.

It is coming up to the five year mark of my breast cancer diagnosis.  It is further than I even thought I would get, and the best thing is that the journey is continuing.

Tuesday, 14 August 2012

Days when I get tired of breast cancer

There are days when I just get fed-up with breast cancer.  When I wish that I could do the things I used to be able to do.  I wish I could walk faster; have more energy; not have that feeling that I will never see something again; that I could just do more.

Although I saw the things that I wanted to see in Cambridge today I wasn't really able to just wander around like I used to be able to do.  To spend hours in a museum getting lost in the exhibits and not having to think about walking up the stairs, or just knowing that I need to keep going because standing still is causing me problems.  For instance I had a moment of panic when I was trying to find the car park where I had left Kermit (my car is bright green and reminds me of a frog ... hence Kermit) and as it was late and I was tired I was beginning to wonder if I would find it, and how much energy it might take if I had to walk along another road to find the entrance.  In the end I didn't have to go too far, but that worry is there when I go somewhere I don't know.  But in the end I am not going to let it stop me from doing the things that I want to do.  To see places that I have never seen before; after all I have a very long bucket list.

Sometime I just straight out wish that this damned disease would just get on with it and kill me off, but that is where the stubborn Vicki comes out of the woodwork and refuses to allow that to happen.  It is fast approaching 5 years since my diagnosis of breast cancer, and in January it will be five years since they finally recognised that my cancer was Stage IV.  Maybe one of the reasons that I enjoyed the Olympics so much is that I recognise the determination, dedication and self belief that it takes to succeed when they tell you that something just can't be achieved.  When I first looked at the stats for survival with Stage IV BC I didn't think that I would make it to Christmas ... but I'm still standing.  I'm even wondering if I should start saving to go to the next Olympics in Rio!

London 2012

I have to admit that the Olympics were amazing, and to think that Team GB finished third is stunning.  I think it was at Atlanta in 1996 that we got 1 Gold and a total of about 7 medals.  Not that it really matters where we finished in the medal table because it is the taking part that really matters. Just goes to show what we can do when we set our mind to it and just get on with it.  I just wish I had been able to actually go to an event, I think I would have enjoyed the rowing from Eton Dorney or the equestrian events but never mind - you get a better view on the TV anyway.

Critisisms?  Tickets were a bit of a mess and the BBC commentators did whitter on a bit too much and got a bit too excited by the Team GB successes but we haven't done this well in over 100 years ... so wait an Olympics or two and it will be back to normal service.

Everyone seems to have really enjoyed themselves.  Some of the students from the college where I work were volunteering at the hockey events and I bet they had the time of their lives.

They having been going on about the legacy of the Games.  One legacy which I hope will continue is in volunteering for various things, and that youngsters will see it as a worthwhile thing to do.  I just hope that organisations will open up to those who come forward because sometimes volunteering seems to be a bit of a closed shop as far as those who run them are concerned.  They should be open to new volunteers and new ways of doing things.

Will there be a real sporting legacy?  I hope so, but the Health and Safety Tzars need to ease up a bit so that people can get involved.  For too long the ideology that competition is bad has held sway in schools.  It is still possible to win and lose without it being a negative thing.

I am at Ely in Cambridgeshire at the moment and on the way up here I went past Stoke Mandeville Hospital which was where the paralympics started.  I bet those who have gone through the Stoke Mandeville experience don't see winning and losing as being negative.  None of us wins all the time and we all have setbacks, but that doesn't mean that we stop trying.  I think we just find a new way of winning.  I spent today in Cambridge wandering around the city.  These days I am slow on my feet and I need walking poles to help me get round, but I managed to see the things I really wanted to see.  I saw a wonderful exhibition at the Fitzwilliam Museum 'The Search For Immortality, tomb treasures of Han China.  I went round King's College and had a look at the chapel and the grounds as well as having a wander around the town.  I am fine if I keep moving, slowly but surely and today I achieved all the things that I wanted to achieve.

Yesterday I spent in Ely itself and spent a few hours in the cathedral on a quiet day.  Tomorrow?  I'm not sure, but I am getting the things I want to do done, which is the important thing.  They are not important in the grand scheme of things, but they are important to me. 

Tuesday, 7 August 2012

Going AWOL

Well not exactly AWOL, but I will be away for a couple of weeks.  I am going back up to see my aunt and check that she is ok, and help her host a party on Thursday for her former vicar's wife (hope that makes sense to you because I think I lost the plot around about former).  Then I am off to Ely in Cambridgeshire for a couple of days and then over to the Peak District for a few more days, a pit-stop at my aunt's and then home for a blood test before treatment.

I am one of the 'lucky' metavivors because I am not on chemo, but I am on Letrozole (Femara) for hormone control (about the only thing that is under control at the moment, touch wood) and Zoledronic Acid (Zometa) which is a bisphosphonate to strengthen my bones.  However my life does, to a certain extent, still revolve around the four weekly treatments.  Working as an administrator in a sixth form college (mostly 16 - 18 year olds) means that I get a long summer holiday which seems to go by quicker and quicker each year.  Ah, remember those long summers when you where a child?  It was difficult to even remember what school was by the end of them; though on the flip-side the terms were interminable.  But I still have about four glorious weeks before the nose needs to be put back on the grindstone.

I don't really have too much planned for my stay away, but I love Ely cathedral, and I will have time to look around the city a bit more.  It is a time to read some books - I've kind of got out of the habit of reading at the moment - and just do not a lot.  Of course, this being England, a lot will depend on the weather.  But I do want to go to Hardwick Hall when I am in the Peaks.  http://www.nationaltrust.org.uk/hardwick/things-to-see-and-do/page-1/  It was built by Bess of Hardwick who married her way up the Tudor social ladder and ended up as an extremely rich and powerful woman in her own right, which at that time was very unusual.  I especially love the Tudor period and this house hasn't been changed much so it should be a real treat.  I may also go to Chatsworth House the home of the Duke of Devonshire.  It is a real treasure house, and the Cavendish family was once so rich they put gold leaf on the outside of the window frames, or so I was once told.  http://www.chatsworth.org/  They certainly didn't do subtle and understated in those days.

I will be taking my netbook with me and hope to be able to get some internet access while I am on the road.  Sit in a Costa Coffee shop with an extra large soya latte and surf?  So I might see you around some time ... or see you in a couple of weeks.  Just don't forget me, please.

Monday, 6 August 2012

Linked to the Daily Telegraph!

I was wondering why I was getting referrals to this blog from the Daily Telegraph, so I clicked on the link and found that someone had posted a link to this blog.

http://blogs.telegraph.co.uk/news/judithpotts/100174708/statistics-play-no-part-in-the-fight-to-get-proper-breast-cancer-screening/ This was my reply to the blog and a couple of replies in particular


Our criticism of Komen is a general criticism of what has become the breast cancer 'industy'. They are all about primary breast cancer and being a survivor. They may not wish to know, but about 30% of those survivors will develop metastatic breast cancer. This is the cancer that kills, you do not die of primary breast cancer. Susan G Komen died of metastatic breast cancer and the organisation that was created in her memory seems to ignore us. One metavivor (someone living with metastatic cancer) was chosen as a featured survivor at a rally but evidently when the video was posted all mention of metastatic breast cancer (MBC) was erased.
I appreciate that early detection is important, but if you can't get the medical profession to take you seriously what does it matter. I was diagnosed as Stage II in 5 years ago at the age of 47. I was asked if I had pain anywhere else and I mentioned deep in my right groin area and my left shoulder. The surgeon simply said "That's interesting". The same hospital had performed my hysterectomy 5 years before that when I was told it was a possibility I might have cancer. As there was no cancer in the tissue removed in the hysterectomy no further tests were done despite the fact that my mother had breast cancer when she was about 53. It turns out that the marker that showed up in 2002 is also a marker for breast cancer. I went to my GP on several occasions and repeated that my mother had breast cancer, tests in 2002 showed that I might have cancer, I was incredibly tired and slept most of the weekend, and my back was so bad that if things went on like this I would end up in a wheel chair in a few years. Response? Go away and come back when things get worse. Basically I am overweight and depressed so no action was taken until I found a lump in my breast in August 2008.
Going back to the conversation with the surgeon in 2008 nothing was done then. I started adjuvant chemo because my lymph nodes were clear of cancer, but I eventually got them to take an x-ray of the hip because I was 47 years old and walking with a stick. The x-ray showed that I had sustained a pathological fracture of my right hip caused by a 4" x 2" tumour. I was not allowed to leave the hospital and was sent up to orthopaedics for further tests, resulting in a total hip replacement a few days later ... nothing happens over the weekends. The cancer had spread long before my initial diagnosis and there are many more like me who were 'too young' and their cancer had already spread.
I am now 52 years old. Last year I had a letter inviting me to my first screening mammogram. I had to phone them and say that it was a bit too late. I already have metastatic breast cancer. This means that my cancer is considered incurable and will be the probable cause of my death ... if the local bus doesn't get me first!
Screening does have a place in trying to get an early diagnosis, but if the medical profession is not willing to listen when you go along with concerns when you are 'too young' what difference does it make? I know that some people have been offended by my reference to those with primary cancer as the Pink Fluffy people but I really don't care. I am fed up with having to spend October trying to feel a part of the survivor-fest that Breast Cancer Awareness month has become. I am fed up with organisations like Komen spending huge sums on 'education' and 'prevention' and pushing for screening (which in itself can cause cancer). What about those of us that the medical profession has basically written off as incurable? I once asked Cancer Research UK how much of their £400m research budget they spend on research into ANY form of metastatic cancer. The answer was 1%, yes you read that correctly ONE PER CENT. As breast cancer has the highest profile of any cancer I can only assume that a large proportion of that went to breast cancer. What about the others; how frustrated must they be by the Pink Fluffy Survivor-fest that is October. Metavivors make up 30% of the breast cancer community so why isn't 30% of the research money raised by breast cancer charities spent on trying to find a cure for the different forms of breast cancer? Are most people even aware that there are different types of breast cancer?
I actually spent this morning making a list of the obits of some of the women from the main support forum that I use, and who have died over the last couple of years. Many were young and had small children. A colleague on the site has created a montage of their photos - Judy V, Velcro, Little Libby, windbeneathmywings, Jess Clem, faithmena and many others. Many are only known to us by their screen names and we don't even have a photo to remember them by. http://stickivickigreatadventu...
Breast cancer is becoming more common. If screening is to take place there are safer techniques than using the traditional mammogram. Self-examination IS important, though it is often scorned as ineffective, but that is the only way I found my cancer. Men as well as women should be aware of self-examination because this is not a gender specific killer, and they should also be aware that if they have relatives with breast cancer they have an increased risk of protate cancer, which they should also get checked out properly.
There is not a metavivor in the world who wants any more to be counted amongst our number. What we ask is that a fair amount of funding be directed into metastatic research, and in that organisations such as Komen and Cancer Research UK have all the power necessary and the money that they raise is funding the research, and they decide who gets the dosh. Stats have to be used because of the demand for proof that XYZ works, and clinical trials is another can of worms. Lumpectomy v. mastectomy is also contentious and those who advocate their chosen procedure use stats. You just can't get away from them.
What we need is knowledge - of the type of cancer we have, the stage, the hormone status and so on, so we can make informed decisions. Those decisions take time and although it may not seem like it when you have been told that you have cancer, there is the time to make the right choice for you. In the end it is all about doing what is right for you and just remember that there are 'lies, damned lies, and statistics'.

Inspirettes we have loved and lost.

The faces of those we have lost.

Like an Olympian, getting it right at the vital moment

I haven't really taken much interest in the Olympics since the 2000 Sydney Olympics.  2004 virtually went by unnoticed, except for catching Redgrave getting his 5th successive Gold and I don't think the Bejing games even came across my radar.  I was trying to think why this was the case.  2004 I was busy supporting one of my best friends who was in the final stages of metastatic stomach cancer.  In 2008 I was in turmoil after being told at the beginning of the year that I had six months, possibly a year, to live.  I was in a dark tunnel at the time and not really taking too much notice of what was going on.  I was just too busy trying to persuade myself not to kill myself.  Things were quite desparate at the time until I finally found my way through to a bit of light at the end of the tunnel.

The light came in the form of Jane Plant's book 'Your Life in Your Hands'.  I was in the local library and having a browse around the shelves when I came across the book.  Here at last was something that really gave me some hope that I could find the path for my journey.  Each of us has to find our journey in life but it becomes an urgent search when you think that your life is coming to an end.  It makes you think about whether you actually want to live at all and to be honest that was something that I found quite difficult to make a decision about.  In the end, as with a lot of things in my life, that little (!) stubborn and determined streak began to take hold.  The refusal to accept the apparent disinterest of the medical profession in my chances of surviving, and the lack of treatment options that they were offering me.  I was bewildered that they were not offering me chemo because then I still thought that this was about the only real chance I had, and it seemed to be even more bewildering that no one wanted to explain the choice of the treatment I was being offered.  Did they really think that my life was worth so little?

I now believe that not being put on chemotherapy is one of the reasons that I am still alive.  It may destroy cancer cells, but it also destroys healthy cells and you immune system.  Instead I went in the direction of alternative medicines and therapies.

One of the first that I used was acupuncture.  This was for purely practical reasons and I had been having treatments even before my hip replacement and Stage IV diagnosis.  I had treatments just to keep myself moving because the doctors weren't taking any notice of the fact that I was having trouble walking.  The first time he worked on my right hip the muscles twanged like an archer's bow as they were released.  When I found Jane Plant's book I could also see how food could also help me, and why I needed to cut certain things out of my diet.

All of these are personal choices, but choices that I instinctively thought was right for me.  It started to give me a sense of control and hope.  Hope is something that should never been underestimated when it comes to dealing with cancer and it is hope that I think was missing in the beginning.  Just as the competitors at the Olympics must have hope and confidence in their ability to deal with a very stressful situation and make sure they get their performance right at the most challenging moment of their lives, so do those of us facing metastatic cancer.  We HAVE to get this right by using our instinct and regaining control, hope and confidence in ourselves and our ability to get it right.

Friday, 3 August 2012

Taking part is the most important thing

I have actually been watching the Olympics this time, after seeing nothing of the 2008, and very little of the 2004 Olympics.  Maybe it is because it is being held in Great Britain and Northern Ireland, as we are known to the Olympic movement, or maybe it was holding an Olympic torch that has inspired me to take an interest this time.

I don't really like the commercialisation of the Olympics and the celebrity competitor status that some of the competitors have, I am more interested in the rest of those who take part and who give their all for the honour of coming last in THE Olympic Games.  Maybe it is a British thing, cheering on the under-dog who doesn't stand a chance, the spirit of 'it is not the winning that matters, but the taking part'.

We all need things to inspire us and sport is just one such source of inspiration.  In my case just being around to watch the 2012 London Olympics is a gold medal in itself because I didn't think I would still be here.  So now I will have to find other things to inspire me ...

Thursday, 2 August 2012

What will be, will be

I got back yesterday evening after a few days with my aunt, who lives near Oxford.  I was going last Thursday but to be honest I was tired and it was so hot and there was no breeze at all and I just couldn't face a couple of hours in a tin can driving up there.

As it was on the Friday I had a call about 8am from my aunt saying that she was going to call the paramedics as she thought she might be having a stroke.  As it turned out she was right, but luckily it was only a mini-stroke and they didn't need to keep her in as I was going to be there for the next 5 days.  She was very tired, and I think it is partly from being rather dehydrated because of the recent burst of really hot weather - for England this summer at least.  She has never been a great one for drinking during the day and I think this has caught up with her.  She has been advised to take 75mg Asprin daily to help to avoid a repeat and I made sure that she drank and had soups etc to keep her fluids levels up.

However I refuse to make her into an invalid when she can still manage on her own, though maybe it is time she gave some serious thought to moving, or at least adapting the house so she can live downstairs.  The thing is that my aunt doesn't realise how fit she actually is for an 88 year old!  She was a games teacher and a professional gardener; in her younger days she played county grade hockey and it is only in the last few years that she has begun to have a few more problems with doing things.  Her once perfect 1 acre+ size garden now has weeds, or is a wildlife sancturary depending on your point of view.  I told her that I am trusting her to be sensible, but I am not going to stop her doing things she enjoys ... within reason.  No aunt, you can't get the step ladder out to get the apples from the top of the tree.  What will be, will be.  If she goes I hope it is with a bang; suddenly, quickly and final.  She would loath the very idea of being dependent and having to rely on others.  If she were 38 it would be another matter, but she is 88.  There should be no stopping her doing what she wants to do.

It is the same approach that I took with her sister, my mother.  I intervened when necessarily and eventually took over doing the garden and most of the house work, but despite severe arthritis I wasn't going to stop her doing things.  Although her death 23 years ago was a great shock to the rest of us, for her it was the perfect time to go and over the years I have taken great comfort from that.  The arthritis was starting to impact on her life, her ability to walk, to hold cards to play Bridge with her friends, and to embroider and sew.  She went out with a bang, though she was only 68, which is compared to her older brothers who died when they were 90 and 97, and her 88 year old little sister.

I suppose that is what we all want.  I dread becoming a burden to others, and I dread the idea of lingering.  When my time come I want out of here as soon as possible - no pussy footing around, thanks.  I also dread the idea that I could die before my aunt, bearing in mind the age her brothers lived to and that I have Stage IV cancer.  In many ways I know that she is lonely as her siblings have gone, and there is no one to remember the joy of growing up on a farm in the Cotswolds in the 1920's and 30's.  Many of her friends have gone before her.  When Uncle Gil died at the beginning of last year it was in some ways impressive that he was 97 years old, but also so sad that few attended his funeral because few were left to mourn his loss.  Age is irrelevant to death.  It does not matter when it comes, it matters if it is the right time for that individual.  I have come to see that living in this moment is SO much more important than living without noticeing that time has gone by, or appreciating that my life is progressing forward, one day at a time.