I’m trying to be careful about this blog becoming all about cancer, when it’s supposed to be about life.  I guess that for many of us however, cancer is a way of life, but I’m one of the lucky ones.  Diagnosed early and treated quickly, that’s me sorted – out the other end of the medical mill with 5 years of Tamoxifen and checkups to make sure it’s not come back (gulp), and ‘Bye, see you next time’.  And that’s good, don’t misunderstand me, because there are other scenarios which I’m glad I don’t have to deal with.

However, the system is now chucking me back and expecting me to do something.  Hey – I’M expecting me to do something.  And I do – loads of it.  Trouble is that it’s not very focused and it’s not particularly productive in the cash department.  I had a very interesting meeting this week with one of the Directors of Kleeneze, Michael Khatkar, and he unwittingly solved my problem.  He was talking about goal setting and how you need the motivation of a tangible and tummy curdling goal to kick start you into big action and keep you going.  Michael suggested sitting down with a blank piece of paper and writing out goals; how much monthly income was needed to get them; and to set a plan to achieve them in a realistic time scale.  I know that’s bog standard stuff to many, but I think he may have solved my problem.

When I was diagnosed with cancer, all my dreams and aspirations melted and were remoulded as staying alive, supporting my family and getting through the operation and treatment, etc.  After all, what use is a trip around the world, or a Jaccuzzi in the back parlour, when you’re too ill to enjoy it, or you’re dead?  The trouble is that’s where I still am and my goals continue to be about survival, not a bed wetting zoom towards a rip roaring life with the adrenalin tingling in the scalp.

Yes, every day is precious.  Yes, I’m very lucky. Yes, there’s more to life than money.  Trouble is that no one is served by me being poor and living out a humdrum day to day survival of appreciation that ‘it could all have been a lot worse‘ and ‘arn’t I lucky‘, ‘stop being greedy‘.  And, here’s the biggy – what’s the point of thrumping away to achieve a goal in 5-years time if I’m not going to be here?

Hell, I could step in front of a bus tomorrow, and it’s not going to veer off course just because I had a lump in my boob – so why should I veer off course just because I had a lump in my boob?  Unless my biggest achievement from this point on is going to be surviving breast cancer, and I’m not sure that can sustain me for the next 40 years, then it’s time to get back to where I was with my goals, aspirations and accomplishments.  Oh, and to have a bit of fun for goodness sake.

Now, where’s that paper……

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Taking pills every day is a new experience for me.  I’m not moaning you understand, it’s just that I’ve never had that sort of medical routine imposed before.

In case you don’t know, Tamoxifen is the drug they give you (they call it chemotherapy) after you’ve been diagnosed with breast cancer which is linked to oestrogen.  You take this to block the oestrogen and the fun side effect is plunging into the menopause the week after you start taking it, instead of the usual slide down the hormonal slope into the menopause.

Putting that aside, Tamoxifen must be taken every day.  I’m one of those people who’s never sure they’ve turned the iron off unless they’ve checked a few times and so I could never be certain I’d done the damn thing.  Then I found this daily pill popper gadget from Kleeneze.  Now I can pop my whole months supply into my pill wallet, each pill in it’s little compartment for each day.  This way I can count down the month until I need to put in my repeat prescription to get the next lot – and off we go again.

I’ve managed to avoid watches and calenders (except for real emergencies like going to Florida) for several years now, so it’s rather disturbing to  now have this horological pill popper.

But there’s another side to this as well, which is far more upsetting.   I should be grateful in many respects because it’s given me an insight into how I have been feeling underneath it all.  This is rather a biggie to admit to…

I’ve started looking forward to when my prescription has to be dropped off at the doctors and then collected from the pharmacy.  Why?  Because someone asks me how I’m feeling and takes a bit of care over me.  It’s not that my family don’t care, they do, but I don’t let them in to look after me and so this role sadly falls to the doctors receptionist and the lady who ladles  out my pills.

Crikey.  I’m not indestructible and so why should I carry on as though I am?  How tough must that be for Mark (husband).  It may to time to speak up when I’m tired, instead of working even harder.  Who I am trying to kid.  Both of us I think.

To you and yours

Sian

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Information on spelt has now moved to

Review Natural Products

When I first came accross Spelt as a possible ‘alternative’ to wheat, I was just a little confused.  On the one hand, I was coming accross information suggesting that people who where intolerant to wheat could eat spelt instead; sometimes spelt bread would be advertised as ‘wheat free’ and yet spelt is also referred to as a wheat.  So what is spelt? And is it a wheat?

Spelt is a relative of wheat with origins in Southeast Asia and was brought to the Middle East over 9,000 years ago, and then spread to Europe.  Spelt as a beneficial type of wheat is not a new concept and was referred to by the 12th Century healer St Hildegard of Bergen, who praised spelt as the best grain tolerated by the body.

It has previously been used in America to feed horses and livestock as a nutritious alternative to oats but is now seeing a rise in popularity accross the West as an alternative to ‘traditional’ wheat.  Whilst this could be the result of the pleasant nutty flavour, it is more likely because people with allergies and intolerance to wheat do not seem to react to spelt.

Spelt does contain gluten, however, those with gluten intolerances may be able to better tolerate spelt gluten.  The grain berry grows an exceptionally thick husk that protects it from pollutants and insects and the grain can be stored with its husk intact which means it stays fresher.  This is all good news because it reduces the need for pesticides and other chemicals.

Even better, spelt is rich in nutrients and in general is higher in protein, fat and fibre than most other varieties of wheat.  It is a highly water soluble fibre which means it dissolves easily and is readily absorbed by the human body.    This feature also affects how you cook with spelt and most importantly, bread.

Spelt can now be bought as pasta, bread, flour, cereal and the whole grain berry (looks and cooks like pearl barley).

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Yes.  In my previous post I talked about how I waited until the very day I was due to start taking Tamoxifen before deciding to seriously consider the side effects.

Seems that for maximum effectiveness, you need to start taking it the day after your radiation ends, which didn’t leave me much time to weigh up all the evidence.  So yes, I decided to take it and spend the next couple of weeks doing a bit of research.  My decision was based on the following information…

1.  I will be taking Tamoxifen for a minimum of 5 years and so a couple of weeks won’t matter that much.

2.  The evidence which I’ve been presented with so far indicates that taking Tamoxifen reduces my chance of dying from my breast cancer within the next 10 years to only 2%. Whilst the odds of dying from having adverse reaction to a prescription drug are 0.03333% (San Diego Union, 5/10/07).

The pernicky will correctly point out that this is likely to refer to an acute condition, whilst uterine cancer is more of a slow burn.  But I have to start somewhere.

So what now?

Well I need to find out how Tamoxifen works and the impact of oestrogen not only on me, but the rest of my family.

To your health

Regards,

Sian

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One of the side effects of taking Tamoxifen is, apparently, an increased risk of developing Uterine Cancer.  DOH! Please note that I am, along with millions of other women, being prescribed Tamoxifen as a preventative measure against a further outbreak of breast cancer due to stroppy and over-sensitive oestrogen receptors. Mmmm.

Now as it happens, I have a scientific background, and so I really do understand about balance of probabilities and all that stuff.  However, that is on an intellectual level, and it feels very different when it’s your body.

I was given a treatment plan almost as soon as I was diagnosed, so why did I decide on the very day I was due to swallow my first tamoxifen pill that I needed to dig a bit deeper into the side effects?  I can’t say it’s because I wasn’t told about them sooner.   Hospitals today are peeing their scrubs with the fear that you’re going to sue them, and so they tell you about potential side effects every 15 minutes or so.  And then they get you to sign lots of bits of paper to confirm that, a) they have told you the side effects, and b) you have previously signed other bits of paper to confirm you have been told about the side effects.  I was told alright.  I just decided not to listen.

When I first discovered that I wasn’t going to die from breast cancer, all due to my gold star treatment (as the hospital described it), I was so thrilled that I accepted everything that came my way in the form of  surgery, therapy and drugs.  If you have been in a similar situation then you possibly understand how it felt, if not, then this is the best way that I can describe it…Have you ever been really hungry?  I don’t mean that you missed your afternoon bicky, but so hungry that you eat the first thing you can get your chops around.  A tin of cold soup.  Scrambled egg on porridge.  Whatever.  The point is that your basic instinct for survival takes over, and you eat what you need to keep going.  You don’t think about calories, taste or additives.  You’re too hungry to bother about making an informed decision.  Well, that’s how I felt when I was given the survival rates if I took Tamoxifen.  Just bring it on…Get the pill popper reader, I’m coming in to land.

So here I am one day after my radiotherapy has finished and what is left of my left boob resembles a poached, red policeman’s helmet (the old fashioned sort) with my cashed prescription of Tamoxifen in front of me on the kitchen table.  As I understand it, to get 100% effectiveness (at blocking the effects of oestrogen, not growing a uterine cancer) then I have to take the Tamoxifen bombette today.

What to do?

To our health, best regards

Sian Murphy

Follow this series of blog posts for in-depth, scientific information alongside and my thoughts about breast cancer treatment options and support.

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This is the short story of how I discovered Neways and Maximol and how what should have been a horrid experience, turned out strangely ok…

When the consultant confirmed that piddly little lumpoid in my boob was breast cancer, I had to resist the temptation to hurtle back home and start searching out every snippet of information on the internet.

I’d done this when my Mum was diagnosed with liver cancer and spent days, yes whole days, being sucked into the vortex of information, snatching at hopeful straws one minute and then swept into despair by gloomy tales and posts on forums.  It’s like climbing into a cancer cave where your eyes never manage to acclimatise to the dark.

I was adamant it wasn’t going to happen again and so I restricted my internet search to finding the one single book which had been recommended by someone at the breast care clinic.  It took me a while to find the exact book because there were a few with similar titles, and I had trouble finding a review, but eventually I sorted out The Rainbow Diet by Chris Woollams.   It turned out to have excellent explanations of prevention and cure and which foods you should avoid and which you should eat.  What I really liked was that this it wasn’t restrictive or fussy diet, which meant I didn’t worry too much about being faddy which not only did I really not feel like, but I wanted to relax and have a treat and remember that life was all about living.  After all – I’d spent 4 years chewing on organic Alfalfa and look where that got me.

The Rainbow Diet talks about Candida, and links to cancer, which was rather interesting because I’d suspected I had Candida for some while.  I don’t mean just the sort of Candida which we all refer to as thrush when we get itchiness down below, but something more deep rooted and living in my gut.  One of the reasons for this was my cravings for sugar and the effect that just a small sip of wine could have on me.  I guess the effects just weren’t bad enough for me to bother with the 8 week ‘candida diet’.  No bread. Say no more.

The Rainbow Diet book recommended a product called Parafree by Neways.  A sort of purge and I reckon anything which causes such a fantastic sounding word to become reality has got to be worth doing – especially when there’s not much to look at on telly and you can follow a few flukes round the WC pan. As it happens, I went on a Presentation Skills course in June when one of my fellow students, Sara, had done her practice presentations about Neways products, and I have to say she looked amazingly healthy.  I was going to say for her age but in fact she looked healthy for any age. It made sense to give her a call and find out a bit more.

I’ve not started on the Parafree yet, which is a shame, because I’m rather keen to see what else emerges, parasite wise, apart from the Candida!  I’m not sure what I’m more exited about – that I don’t have to give up bread and every sweet thing that ever grew or was made, or that I might have worms as well.  What fun!

The reason I’ve not started it yet is because it was suggested I hold off for a while to give my immune system a chance to get a bit stronger.  So right now I’m sorting out my immune and digestive system with the Pro-biotic, (which is also recommended as the Neways brand in the book), the Maximol and the Omega 3.  The parafree starts in a couple of months.

It’s not cheap stuff, but I’ve signed for free up as a distributor which means I can get it all at wholesale price. And anyone can do this. I’ve been taking it now for about 2 weeks and I’m writing this post at gone midnight – so guess my energy levels are improving.  Phew! ‘Cos I’ve been knackered for ages.

If you want some more information about how you can become a distributor then just email me at stormchasers.ltd@googlemail.com  and please make sure you put Neways into the subject line so I can pick it out from all the crappy stuff.

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