Result!

The results are in (of the kidney scan) and they are good.  It seems that the kidney is working well again, and my recent blood tests are all as normal as I am ever going to get.  The extra special good news is that the kidney stones that were detected by the ultra sound scan on 8th May have rolled away and 'passed' into history!  I know that I have not been getting the same kind of pain in my left kidney area for the last two or three weeks, so the pains must have been the parting of the ways.  Good thing that they were so small (6mm max) and so could find their way out without any help.  When I was 12 I had kidney stones removed in a major operation (40 years ago) which left me with a huge scar.  Then the largest stone was the size of a sixpence piece, which is about 1.5cm across, which for a twelve year old is huge.

So today has been a good day...even better they had forgotten to schedule my treatment today as the message was not passed on by the person who booked the appointment with the oncologist, as it has to be done on another screen.  Anyway, normally this would have been a disaster and involved waiting around to see if they could fit me in, but it seems I can now have the treatments at Oakhaven Hospice in the town where I live, so I will be popping along at 2.30 tomorrow afternoon for the Zoledronic Acid iv treatment.  For those of you not familiar with the delights of bone metastases treatment this is a bisphosphonate to strengthen the bones that are being attacked by the cancer.  It was first developed to treat osteoporosis but it has shown to be very affective in treating breast cancer bone mets.  I have been having this iv treatment nearly every four weeks since February 2008, and so far it has been helping to keep things under control.  For me it has had very few side effects, except for the first few infusions which made me very achy, but now I can tolerate it at full speed which means that it can be given in about 15 minutes. 

So far with the different treatments I have had I have been able to tolerate them very well.  I think this is partly because I have always tried to think of the treatments as a positive thing which is helping my body deal with the cancer.  I always make sure I drink about one and a half litres of water to help flush out my system, and I have been drinking a lot of water recently, which probably helped with the kidney problem.

I use visualisation and meditative music to help me accept the treatment into my body and focus it on the parts of my body that needs it the most.  I think if you can stay relaxed it is easier to absorb the medication into your body.  If you resist it, and you think you are going to be sick and have a bad reaction inevitably you will.  I remember sitting in the treatment room at the hospital and a young woman next to me was having her second chemo treatment and I could see the tension and resistence in her body.  I left soon after they started so I don't know what her reaction was, but to me she was already convinced that she was going to be ill before they had even started to administer it.

I tend to visualise my cancer cells as bubbles that are being burst by my T-cells, which look like a sword - pop, pop, pop!  But it is late and I must get to bed, so I will continue with this theme at a later date.  I didn't have a good night last night as my kidneys have gone into overdrive so I had to get up five times in the night, then I got really bad hiccups about one o'clock in the morning which went on for well over half an hour, by which time I was wide awake!  Then I managed to knock the setting on my alarm clock and ended up hauling myself out of bed an hour early!  I couldn't believe it!  I thought the battery in my clock in the kitchen has run out, but it was actually telling the right time!

...and so to bed...

Good weather for The Boss

The weather at the Isle of Wight festival has been making the news - endless mud - but Springsteen will have had good weather for his trip over on the 4pm ferry from Lymington to Yarmouth, and for his set this evening.  It is a really lovely evening with sun and blue skies.  My brother works on the aforementioned ferry and they evidently had a really busy morning with people coming back to the mainland because they had just had enough.  Last night it poured and the wind howled again, and I think that might have been just too much for some of the festival goers, Boss or no Boss.  However they might just have missed out on the best part of the festival, and it brings to mind Hendrix's set at Woodstock where he played to an almost empty field, though everyone claims that they were there.

We all do it sometimes...give up on things when we should see it through to the end.  Sometimes when you are in the midst of something it is difficult to see that there can be a happy ending to what is happening.  I know I do this on occasion; I can only focus on what is going wrong right now but then I usually just put my head down and trudge onwards, though not necessarily without a growl and a loss of temper.  I am getting better at this though and I think that is because of Mindfulness Meditation.  I don't practice it anywhere near as much as I should, but I do use it a lot to centre myself and bring my attention back to my breathing and reminding myself that right now everything is really ok, I am safe and it is ok.  I can take myself to certain places and marvel at the beauty of a place I have been when it was warm and sunny, and yes, everything was ok.

I was thinking about natural beauty as I was driving home across the New Forest from my acupuncture appointment in Wimborne on Friday.  I actually live in a really beautiful part of the world, but it is something that I really take for granted because I have always lived in this area.  We take for granted what is around us all the time, be that the natural world, the people, the way we think.  So sometimes I need to remind myself what is good about my life when things just seem to be going wrong all the time.  Too often we just look at the big events and highlights rather than the normal and everyday.  Those moments which stay in the memory tend to be those Big Moments, a view, an experience; but life is mainly made up of things that are far more mundane and these are the things we should also value.  The main reason I went for the new post as Attendance Advisor was because of the routine that working gives my life.  It certainly isn't for the money as it will be a third less hours, and therefore a third less income, but the routine and the social contact is more important than that.  The little things in life really can make it worth living.

Annoyed, frustrated and fed up

I had hoped to be able to go up to London today to meet a friend who is in the UK briefly but it is not to be.  I am starting to get annoyed, frustrated and fed up with the lack of a diagnosis of just what the hell is going on with the problem with my left ureter.

This problem has been showing up on CT scans for four years or so, and until my scan on 28 March 2012 it had remained the same.  The report of that scan showed that it could be 'disease', or as it would be known to others, a progression of my cancer.  When I was in hospital in March it was vital on the Friday that I stayed in to have further investigations, but by Saturday morning it was deemed not to be that much of a problem and I could go home.  No real explanation as to why they had changed their minds so abruptly.  This is annoying on several levels, not least of which is the fact that when I filled in one of the forms when I was admitted I put that YES I did want to know what was going on.  It is now nearly three months later when I see, hopefully, the oncologist on Tuesday morning; though that will depend on how completely over booked his clinic is.  Last month they had basically double booked him and I eventually got to see a nurse practitioner and hour and a half after my appointment time.  She then had to consult him and I was told I would have another scan before my next appointment.

That scan appointment only come through because my sister-in-law was nipping at their heels, otherwise I would probably still be waiting.  All in all I just have always had the impression that they are just going to let things progress, and they will just deal with the symptoms with palliative care.  So how much does this make me feel that they want me to go into a corner and curl up and die?  TOTALLY.  This was the impression that I got from my first oncologist, and I have never really felt that Southampton General Hospital has any intention of doing anything but the bare minimum while I die as they don't want to waste money on me.

This was why I felt I needed to go out and find some way of helping myself.  I lost a friend to stomach cancer 8 years ago and I stayed with her during the final part of her illness.  It was through friends of hers that I first heard of some of the alternative and complimentary ways of dealing with cancer.  Therefore I already knew about B17, and the Bristol Cancer Care approach, now Penny Brohn Cancer Care.  Even then I have found difficulties.  I twice arranged to go on residential courses at Penny Brohn, only to be told very close to the date that they were running them for people who hadn't attended the centre before (I did a one day Introduction and another day course) so it wouldn't really be worth my attending!  Yeh, you guessed it I lost it, especially as the second time I booked I was assured that the retreat I had booked for was not for beginners.  Rejected yet again.

When I went to the Breast Cancer Haven in Hereford and plucked up the courage to go in for a class they were advertised I was treated like some pervert who had comed to look at breast cancer patients, and was also informed that I had to book.  No such information was on their website, or on the board outside the front door.  I had actually travelled 150 miles and booked into a hotel for a few nights to be able to attend this class.  Rejected yet again.

Too many things about cancer, and breast cancer in particular, seem to be so cliquey, and so 'ladies who lunch' who have time to give to the right sorts of charities.  For instance I would like to help out in one of the shops that supports my local Hospice, but the people in the shop are so superior that I don't think I would fit in at all.  I have never donated anything to the shop as I don't think I have anything which is 'good' enough to be accepted.  It all seems to be posh labels, not supermarket brands and Evans which is the type of clothes that I would have to donate.  It is one of the reasons why the town I live in made the national papers because of the snobby attitudes of some of the residents who didn't want an Argos shop in the town as it would lower the tone.  These people forget that now everyone who lives here has a yacht, a second home and a big income.  These are not ladies who have to work for a living as some of us do.

I may have commented on this before, but breast cancer is all about the 'fluffy pink survivors' to whom we are a bit of an embarrassment who is spoiling their statistics.  I once asked Cancer Research UK how much of their research budget they spent on research into secondary cancer of any sort - turns to be about 1%.  It is all about catching cancer early so it can be treated.  Well folks, what about those of us who have been ignored by doctors, despite scientific evidence of having cancer, for years until it is a case of 'sorry, too late to do anything other than making your death easier'.  Thanks for NOTHING and SORRY for spoiling the stats, and the profits of Big Pharma.  After all they don't want to help us either as we would make their creative statistics, and therefore their profits look bad.

Right.  I think that is enough bile for now.  The sun is out and I need to get some bone strengthening exercise by walking into town...

I got the job

I had my outcome meeting today about my application for one of the new posts at the college where I work.  We have been under treat of redundancy because of the reorganisation of the Student Services area where I work, so after a consultation period we all had to take voluntary redundancy or apply for one or more of the new posts.  Evidently I put in a good application and did a good interview so I got one of the two posts as Attendance Advisor.  It also probably helped that I was the only person to apply for these two posts, so I suppose that the next stage is that they will advertise the other post internally, and then externally.  I think that everyone got a position that they wanted, though neither applicant was successful for the supervisor role, but personally I think that it would be better to have someone from outside the current team to take that role on.  At the moment it is all feels a bit as though they aren't sure where it is all going, and certainly they aren't sure how it will work, or where we will physically be working and so on.  However as I am the lowest in rank none of that is my problem, there are people much higher up the pay scale to make those decisions.

It will mean that I will be working 2 - 7pm on four days of the week during term time, which I am not delighted about; and it will also mean a third less pay as my hours have been cut by a third.  This is not ideal, but I probably won't have to pay, or not pay very much, income tax so that might help to soften the blow a bit.

Anyway, it will be interesting to see how it works out.  At the moment the job market around here is not good, and with my health complications it would be difficult to find something else.  That is partly the problem of living in a rural area without many big employers and I would not want to travel any distance.  At the moment I have a 10 mile commute to college and home each working day which is not bad...except for this morning when the traffic lights were out early on the area where they are laying some new pipes.  Took me twice as long to get less than a mile, than it took me to get the rest of the way.  They did that a couple of times last week, but I thought maybe someone complained about them putting out the temporary lights too early at the busiest time of the day, but maybe I was wrong.  One thing about living in a rural area is that I don't usually have to sit in queues, except at the railway crossing just before getting to work.

Have my pre-treatment blood test early tomorrow so I need to go to bed.  I'm tired.  Goodnight...

Work is a drag

I don't really like this time of year at work because it is very quiet, and I'm not very good at taking it easy and chatting as I am used to have to work at top speed to get through my work load.  This week one of my colleagues is on holiday in Spain and I am having to do her job and mine, basically, and I still don't have enough to do.  And as I am on the front desk dealing with the students I can't really hide away and read a book, so I am pretending to do something while I blog.

It does raise the question of why am I trying to stay working at the college?  I do wonder sometimes if I have made the right decision.  When you are Stage IV it is difficult to be able to make decisions about things like work.  Do I give up?  What would my life be like without work?  Am I wasting what time I have doing a mundane job?  What about finances?  For that matter how much time do I have?  What do I do with that time?

I like the concept of being 'normal' and still being able to work and contribute something to society.  I don't want to be sitting at home, starring at the walls and waiting to die.  Stage IV doesn't come with a 'best before', 'use by', or 'display until' date because there are no absolute barriers.  In my case it has been a matter of continual adaption to my conditions - physical, mental and emotional and these are subtle and ongoing changes which affect not only myself but my family and those I work with.  On occasion this means that I am not the easiest person to be around but, just as I accept that others have a bad day, I expect them to accept that I am not always at my best.  Sometimes it is difficult to remember that there are others around when I am having a 'crisis' because there is always the feeling that I am on my own with this; and besides there is so much junk floating around in my head some times I wouldn't wish that on anyone.

Oh joy - time to go home... 

Yep! Them is blue skies!

If you are in the UK you know how diabolical the weather has been lately, and if you are overseas you may have seen some of the Diamond Jubilee coverage and noticed that the weather was just not playing nice.  In fact a friend had a birthday a week ago and I e-mailed her and said that it can't be that often that she has had a cold, grey and wet birthday...now she knows what it feels like to have a birthday in February.  I had actually forgotten her birthday because the weather has been so cold I just hadn't realised that it is June.  Wimbledon will soon be with us for goodness sake and while I don't mind the rain too much, even I think it would be nice for it to be just a little bit warmer.

Today is slightly different.  I had actually forgotten how blue the sky can be, and combined with it not being too hot has made today just about perfect infact.  It is strange how the weather can affect your mood and just make it that much easier to get going in the morning, and how everything seems to take a little bit less effort.  Personally I love the British weather.  I couldn't imagine wanting to live somewhere where it is hot and sunny all the time, because how do you really appreciate a beautiful day when it comes along?  It must be in my DNA that I have a pathological need to be rained on for x number of days per annum; but not necessarily as much as it has recently and all at one time.  We all need something to mark out the special things in our lives.  These marks are not always something as obvious as a blue sky after seemingly endless rain, because they are often ordinary things that remind us how special it is to be alive.  A smile, a song or something that jogs a special memory can be all that we need to make a day and lighten the darker days or moods.  It is like being out driving and suddenly turning a corner and seeing a wonderful view that can take your breath away.

These are actually the things which make my life worth living.  When I meditate I take myself to a view on the north Devon coast which is also the screen saver on my computer at work; or the view as you look back from the climb up to Belas Knap in the Cotswolds, or any of a miriad of other memories.  Unfortunately we cannot hold these pictures and memories in our mind all the time, but this is what makes them special - the very fact that they are not there all the time, because if they were there all the time they wouldn't be special would they?

Race For Life ???

For two years after my secondary diagnosis I did the Cancer Research UK Race For Life along Bournmouth promenade with friends and/or family.  For those of you who don't know this is a 5km ladies only walk or race which are held all over the UK to raise money for Cancer Research UK which is one of the largest cancer research charities in the world.  Why, you may ask, did I not take part in the Race For Life today?

Over a period of time I have begun to really wonder where the money raised actually goes.  I contacted Cancer Research UK and asked how much of their research budget did they spend on any form of metastatic, secondary cancer.  After all this is the cancer which actually kills most of the patients who die of cancer.  Their answer was that they spent £4 million.  A lot of money, until you consider that they have a research budget of £400 million a year.  So about 1% is spend on researching the types of cancers that kill the most people.  This is the primary reason I don't take part any longer.

Why do I feel that charities now waste a lot of money on CEOs who are highly paid, and other paid staff who fund raise, raise awareness of the symptoms, organise the shop, and much more.  But how much money has to be raised before there is anything to actually contribute to the cause?  While I appreciate that these are full time jobs some of these folks seem to be paid an awful lot of money.  Going into the voluntary sector is no longer a vocation but a serious career move.

With breast cancer there is already a lot of information to raise awareness that is freely available, so why are there so many charities doing the same thing, as well as the NHS?  Lets face it there are a lot of people out there who won't listen, come what may.  And whose fault is that?  Now there's a question.

A lot of advice is available about how to try and prevent cancer and about life style and diet that can help prevent the disease, but constantly the media and the vested interests undermine this information.  One day potato is good for you, the next it isn't.  Is salt good or bad for you, bearing in mind that it is a mineral that we all need to survive, and what about fats?  Not all fats are created equal, though all are needed but in the right ratio, so which one is good and which is bad; this week.  It is all treated as a good source for a story and a few emotive headlines.  After all smoking was considered to be healthy at one time, and even when the truth was known the vested interests ignored this information so their profit margins were not affected.  Smokers also ignore the information scientific evidence that tobacco caused cancer, but then we all thought this wouldn't happen to us, didn't we?  There is no absolute way to avoid cancer because it is a complex disease which has, in my opinion, far more than one cause, of which life style and diet is only a part. 

The other problem is the vested interests.  Which is more important the health of your customers or the bottom line of the profit column at the end of the year?  Sadly it is the latter that matters to the people who make the decisions; after all their bonuses depend on that figure at the bottom of the profit column, well it did at one time; now I am not so sure as they seem to get huge bonuses for failure as well these days.  Food should be about nutrition and not about how long it can stay on the shelf, or how cheaply it can be made for the maximum profit, or how many artificial ingredients you can stuff into it to make it look better, taste better, last better.  The trouble is that we are lead to believe that processed food is convenient and healthy because of all the nutritional information on the packaging, and surely companies would not make food that was bad for us, would they?  In addition there are a lot of people now who cannot cook, other than opening a packet or a can, reading the instructions and following them so the product turns out the same every time.  How many of us really think about what we eat?  Until 4 years ago I didn't give it much thought, but now look where I am.  Don't make the same mistake.  I always thought the idea of your body being your temple was a bit silly, but now I know that it is true.  My body may not be the slimmest and fittest temple around, but at least I now think about what I eat and now it can effect the ability of my 'temple' to cope with the disease the doctors said should have killed me by now.