Towards a new year – and a simple resolution for everyone :)

I am not one so much for New Year Resolutions.  However, I have this sense that the start of the year sets the tone for the coming year.  I always try to make sure I am doing something which reflects how I see or hope the coming year will be.

How ironic then that last year I decided on a health focus for 2009.  J was working in the jungle, and I had been working in northern Sri Lanka over Christmas.  With a heavy year behind me, and a big milestone birthday coming in the summer, I felt a prompt to enter the new phase with a healthier outlook and self. So my New Year was spent quietly, tippling on green tea!

This year we’ll be sitting in Bangkok on the countdown to the next chemo 2 days later, rather than the countdown to the bells. However, I have something I do want to do for the New Year. I have been humbled and overwhelmed by support, prayers (of every faith), messages and gifts – you cannot imagine how much this has boosted and helped us, especially in the lower days.  There is something small I can offer in response.  Whether you are thinking of a New Year Resolution or not I have something to share.  And surprise, surprise, it’s breast cancer related!

Since my diagnosis, it’s not a surprise that many of my conversations these days relate to the BC experience.  One thing that really struck me is that although most women (friends, family, colleagues…) know very well the importance of self examination as one form of screening, many say that they are not fully sure when and exactly how to do a breast examination.  On my journey with Google, I have discovered a couple of really good articles setting out how this should be done, as well as other important diagnostic and screening measures and things to look out for.  I have to stress that screening varies from country to country along with health services and policies.  There is also currently a considerable and lively debate about mammograms for women between 40 and 50 years old.   My aim is to share what I feel is useful and helpful information on what we can all do ourselves, as well as raising awareness.  The debates are for another day or another place.

So whether you are interested in making a New Year Resolution that is easy to keep, or to share with the women in your life (as appropriate of course), this is for you.  Firstly, a helpful How to Check your Breasts which appeared in the press here, by my Dr W.  He outlines in clear and helpful way, how and when to carry out a self examination.  The second piece is Time for a Breast Examination from the hospital.  Both are intended as a prompt and enabler.

And it means that I will be able to start my own New Year in the way which sets the tone for the coming year – proactive, drawing something positive from this breast cancer encounter and looking towards a year of recovery, creativity and productivity

And don’t forget……………

“Life is not about waiting for the storms to end, but learning to dance in the rain!”

Wishing you a healthy and happy 2010 which fulfils your dreams and inspirations!

Meet Grizzly! The wig story

After six weeks of baldness, I still can’t get used to the sight of Dr Evil in the mirror. No matter how much I rationalise the baldness I can neither bring myself to like it nor disassociate it with cancer.

I am using a variety of ways disguising it – mostly scarves and hats (thanks H and R ) depending on what I’m wearing, what I’m doing and my mood.

Yesterday I plucked up the courage to go down the “wig route”. After my unsuccessful attempt in November J’s sister had done a reconnoitre of wig suppliers in Bangkok. She came back with a suggested store and some very reasonable prices. My previous foray had resulted in a grand total of two possible wigs which were both very expensive and very dark for my skin colour. Only one of the two was vaguely wearable and for a shrewd (ie stingy) Scot it was not a sensible outlay for one wig that was not, in my view, totally fit for purpose.

So yesterday we headed straight to the store. I had brought my camera and had a vague notion of a fun session, trying on outrageous and different hair colours and styles before settling on a wig which transformed me to a young glamorous version of myself.

Indeed, there were a few more choices this time, with lighter colours and various lengths. The assistant was really helpful and as I worked my way through most of the wigs, she spent time brushing them carefully before I was allowed to look in the mirror. The first one I tried was similar to my own style, but just a bit longer. But on my head it somehow transformed into “Big Hair”!  The thing is I realised is that your own, natural hair grows straight out of your scalp.  Even though my hair is fairly thick, it fell smoothly around my face – thanks, gravity!  Wig hair, however, has to be fixed something and this felt a bit like carpet backing. On the shop stands the wig hair falls sleekly but those heads must be deceptively narrow. So when the wig goes on a real head it adopts a kind of bushy look! Or it certainly did on mine.

I tried long and short and they all gave me the big hair look. The assistant suggested that I took one of the longer wigs and took it to the hair dresser to cut it to the right length. A very sensible suggestion. Except for the memory of too many visits to hair dressers when you come out unhappy with the results, and the thought that makes it bearable? That you can go home, wash your hair and re-style it, and you know it will grow back soon enough. You have none of those options with a wig – if you get it cut and don’t like it, you are stuck with the result!!

So I finally settled on the shortest wig, even with its sticking out sides. The assistant, bless her, sensing my discomfort on exposing my shiny white scalp, snipped off the price tag and said I could keep the wig on (just like a new pair of shoes). She had clearly guessed from the lightning changes from wig to wig. (This had also sabotaged any desire to take any photographs).

Once paid for, I was let loose on the streets of Bangkok. No more Dr Evil or Queen of Scarves! It’s amazing how a “not-quite-perfect” wig made me feel much less of a freak and less visible.  Even if it did make me feel as if I had a baby grizzly bear on my head!

And last night I took Grizzly out for a test drive as I was meeting a good friend for dinner. Grizzly behaved, didn’t fall off and although a touch scratchy and warm, definitely made me feel much more comfortable.

I do recognise and accept that it is not possible to recreate my original look but I am so glad to have another option to keep Dr Evil at bay ;).

The hair obsession – going….going…..gone

Although I joked about losing my hair from the beginning of this cancer encounter, for some reason I thought it would not happen to me. I knew that the side effects of chemo were very well-managed these days and perhaps I latched onto that and believed that somehow I would be lucky and keep my greying locks.

The first brush (no pun intended 😉 ) with reality came with the first chemo session. The oncology nurse went through the side effects with me and said that the most common one was hair loss. Gulp!

The next moment of truth came a few days later when I met up with another woman who has breast cancer. We were working out how to identify one another – I said that I would be wearing a bright scarf to hide my new lopsided shape. She said that she would be wearing a hat to hide the fact that she’d lost her hair. Big gulp! It began to really feel possible that my hair could also go.

Looking at various breast cancer sites and particularly a discussion forum, it slowly sank in that unless you wear a kind of “cold cap” during chemo (only available in some oncology treatment centres), then your hair will almost certainly fall.

I also learned that hair fall usually started between 1 to 2 weeks following chemo. Great! Exactly the time my son R was due to visit.

I developed a new and irritating habit of running my fingers through my hair, and then examining my hand for loose hair – and there were always a few. Towards the end of the second week, the hair fall was certainly increasing, but was annoying rather than visibly obvious.

As I entered the third week I knew that I needed a pre-emptive strike. On the Monday we tried a number of hair dressers as I had decided to get my hair cropped short. For some reason, none would cut hair that day. Perhaps it was inauspicious. After all, in Myanmar there are specific days when you should and should not cut or wash your hair. We tried again on the Tuesday, and this time the hairdressers were willing. I had reached stage one on the road to baldness. The very short cut was to ensure that it didn’t feel such an extreme step when my hair did disappear, though as I recorded at the time, I felt like Orville the duck!

My scalp was really tender, reminding me of the days many years ago when I had a very long hair. I remember that my scalp would ache if I tied my hair back too tightly. Now even resting my head on the pillow became really painful, and the hair very irritating as it fell on my super sensitive heebie-jeebie skin.

The second chemo session was on 15 November and Dr W2 expressed surprise that I still had hair. By this time I could feel each hair as it fell onto my skin and most of my time and energy was spent lifting and removing each hair.

It was clear that my days of having hair were numbered. There was a ridiculous amount of hair on my pillow in the morning.  Now the thinning was becoming visible, particularly around my forehead. I knew that I would have to face the barber and have the remaining patches shaved.

So on Tuesday 17, two days after the second chemo and already feeling rough and sensitive I dragged myself reluctantly to the hospital hair dressers. I explained about my hair and being located in the hospital, I am sure they are used to this. The barber was summoned, and he appeared with the clippers. No matter how much I had tried to gear myself up to this, however it didn’t help.  I couldn’t stop the tears falling, as the white of my scalp was exposed. My scalp and swollen follicles were really tender and the shaving more uncomfortable than I had expected.  In no time it was finished, I was unrecognisable in the mirror and Doctor Evil had arrived!

I felt as if I was at my lowest point. The whole hair loss business had taken on a much greater significance than it should – I know that rationally – but that’s how it feels to me. No matter how much I try to rationalise this, the baldness feels like a visible cancer label.

Recommended reading – and cooking!

This is the wondrous life saving book I referred to in the previous post.

There is also a review of the book on this site:  http://www.cancerforum.org.au/Issues/2009/November/Book_reviews/Healthy_eating_during_chemotherapy.htm

It describes the book, and particularly highlights that this is far more than a cookery book.

The review tells it much better than I can but I can’t resist sharing my favourite bit. In the book it states that amongst other foodstuffs,sugar is not good for you.  However, if a chemo patient is struggling with eating and it is a choice between sugar and nothing, then sugar is ok.  I am sure you can substitute sugar with chocolate or pizza, or ……………

Introducing the post chemo Groundhog days (not suitable reading for fragile, post-Christmas souls)

(Afterthought – folks who celebrate Christmas might find these Groundhog days a bit reminiscent of post-Christmas days when you wake up and know it is some form of turkey or whatever you had for Christmas dinner yet again on the menu!  I remember it well!!)

Moving on – the story continues from 23rd of October

The first chemo was finally over and I was in no time back at the apartment. However, having the chemo is only the beginning – I knew that the real challenge was ahead of me in the form of side effects as the chemicals started their work of destroying cancer cells as they zip through the blood stream.

It was around 7 pm so already dark and time to settle for the night. I was still feeling numb from the session and felt safer asleep than awake soon nodded off.

I was drinking plenty of water – that pink urine really freaks you out so the sooner it can be flushed through the kidneys the better. Inevitably, this meant waking after a couple of hours and that is when the overwhelming waves of nausea first struck. I wasn’t actually sick but I felt really rough. I still managed to get some cat naps in between trips to the loo and with great relief was able to take my next nausea meds as the sun rose.

That sunrise marked day 1 of what I soon labelled the groundhog days characterised by that awful feeling upon waking “Oh no, not again………”  re-living the same day over and over. Of course, I didn’t know that on day 1, all I knew was that I felt foul.

As the Groundhog days progressed every meal time became a struggle. I knew I had to eat and drink to maintain my strength as the chemo did its destructive work zapping any cells in its sights. I imagined it unfolding like a game of space invaders – apt given that I had already seen the image of the main tumour and its close resemblance to a spaceship.

It soon became apparent that pretty much all foods which are not good for you, really appeals. Similarly, anything vaguely healthy smells and tastes foul – especially when it is cooked.

Through these first few days I discovered that I was able to face toast and Vegemite (interestingly not Marmite which I usually love) and that quickly became my staple diet. I’m now a bit concerned that defection to Vegemite could have serious implications for my citizenship! I also found that Jaffa cakes were good for the groundhog days, but sadly my supply was quickly finished. (Luckily I knew that more Jaffa cakes were on their way with my son R, who would be arriving the following Saturday). I found I was also able to take soups.  Pizza, although not very healthy, was remarkably appealing. It was a real struggle, though, to work out what I could and what I should eat as these were often in contradiction. It is hard to avoid chicken if that is what really appeals, and equally hard to try and eat fish when the sight and smell of it really turns your stomach.

This obsessing about food is accompanied by an overwhelming exhaustion and fatigue. Another effect of the chemo is that it suppresses the immune system so it is very important to avoid any exposure to infections such as coughs or fevers and to be very careful about food hygiene. This somewhat reduces the chance to get out and about and have a good time.

I had been given anti-nausea medication for three days following the chemo, but I continued to feel rough for around a week.  On the Thursday, the sun rose and I noticed that I felt brighter and definitely a good bit better.

Perhaps this was helped by the fact that I had no fewer than four appointments with various doctors that day. I had blood tests taken, and apart from a touch of anaemia, was dealing well with the chemo. I had stitches galore removed from both of the surgical procedures. Even my blood pressure was behaving.

The Friday was also good – helped for sure by two sets of visitors, including close friends whom we had not seen for nearly 5 years and who were passing through Bangkok. And on the Saturday (31 October), R arrived safely bearing wonderful gifts of Jaffa cakes, silk scarves and trendy hats for the impending baldness and a life-saving book entitled “Healthy eating during chemotherapy” which I will mention in its own short post.

It was now just over a week since the first chemo, and the fog of this first set of groundhog days had cleared.

A Pink Christmas

I just wanted to share this striking seasonal image………..

courtesy of http://www.metro.tokyo.jp/ENGLISH/PHOTO/2005/051104.htm

Abducted by aliens

And another thing – I want my taste buds back!

It’s over a week now since chemo 3 and my taste buds have been abducted by aliens, or replaced with alien taste buds or something.

How I long for a refreshing drink of water.  In fact, it is really important that I drink a lot of water to keep flushing the chemo through my system.  I have to drink a minimum of 2 litres a day, which should be no problem.  But since the alien interference with my taste buds my whole taste system has been totally sabotaged.  Water tastes foul – a bit as if it has gone stale or been lying stagnating.  It also has – now how clever is this – a different texture!?  And it leaves an aftertaste and nausea which gets progressively worse instead of better.

I discovered a neat little trick in Yangon to address this.  Squeezing a little lime into the water tricked those taste buds and made the water vaguely palatable.  Now that chemo 3 is over though, or perhaps because Bangkok limes have a different chemical composition, it no longer works.  I can see the lime, I can sense there is a slightly different taste, but it sure isn’t lime or lemon flavoured.  And it still tastes foul!!

If this is the trouble I am having, just with a drink of water, let’s factor in all the other tastes which have been skewed.  Then add cooking smells to that, to ensure maximum yucky feeling and lack of appetite.  It’s also great for making me turn up my nose at the very dish I had specially requested.  Next subtract all the foods I am not allowed or should avoid (anything tasty) and you can imagine the challenge for J who is trying all sorts of tricks and ideas to make food tempting for me.

So here’s a heartfelt a plea for my missing or alien taste buds to be restored – pleeeeeeeeeeeeease……………..

Progress report and a dilemma.

I realise thinking back, that I haven’t mentioned twang arm for a while. I think that’s a good sign. It shows that actually even although my left arm is still troubling and twanging, the fact that I have not mentioned it so much indicates that it must be  improving. (I had better not say that too loudly though, in case twang arm is listening).

While I was in Yangon, I found I was finally able to straighten twang arm. This makes it much easier even just to walk comfortably! I still have restricted movement but when I look back I realise that the range of movement is much greater now. Also, the pain level is much reduced, and that the numbness and tingling sensation is not so great, and it generally feels just a bit less twangy. I also had a really weird tingling sensation in my left cheek and left ear earlier, if I touched them.  Now my cheek is fine and there is only the very slightest sensation in my ear now. So all of that is real progress.

I have to say it’s not happening on its own. I am doing gentle physiotherapy exercises several times a day to try and increase the range of motion just a little. I am also doing a very gentle yoga routine (designed specially for me – next step baby yoga), as well as swimming occasionally.

Now back in Bangkok, we have a lovely little pool in our apartment block. However, to get into the pool there is the usual ladder and I do not have enough upper arm strength to be able to use that. I think I could get in the pool no problem, but I’m not sure that I could get out! You have no idea how frustrating it is to hear it call my name every morning and know that I am not quite ready to get in yet!

However, I have to say that even this improvement is very slow and that my progress is hindered particularly at the chemo times. Although the general direction is forwards, at these times I do feel that I’m slipping back a bit.

And that’s where we come to the dilemma. Unfortunately, one of the activities that is not good for twang arm is typing. So I am carefully trying to balance how I use online time. The challenge is, that documenting this, communicating and emailing, as well as gently engaging with work, is helping my recovery and mindset considerably.

So this means I am continuing to document this but getting it online is taking time. I do have in my mind, to develop a set of links so that it is easier to look through this blog and follow the chronological story. Let’s see if we can bring together twang arm and my lack of Internet savvy and put something together very shortly.

I have mixed feelings about regularly posting over the Christmas and New Year period, because the subject matter is often pretty gross and incompatible with celebrations. I will probably continue to update in the same slow pace, however, just to keep things moving forward as well as helping to maintain a level of mental equilibrium. And moreover, just as others are nursing hangovers in early January I expect I’ll be nursing my next chemo groundhog hangover so why not indulge in my gecko therapy just now. 😉

Picking up the story – chemo 1

There are still many gaps to fill in.  The last part of the story was posted on December 4 (More surgery) and brought us to the point on 23 October, where the nurse came to take me for my first chemo session……..  Again, if you are not prepared for gory detail then this is one to skip.

23 October

I was so scared but I knew that it had to be done and I was wheeled off without protesting to the oncology room on the same floor. I do recognise that things have moved incredibly quickly, after all it was only 18 days since the major surgery, exactly 3 weeks since the diagnosis and already my first chemo was to be administered.

I think it’s fair to say that I was afraid of everything. I was frightened of the chemotherapy process.   I was frightened of using the port. I was frightened of adverse reactions to the chemotherapy medications. And of course I was frightened of the side-effects.

But the staff were lovely. They were totally professional and very calm as they prepared me. I jumped though as they pressed the port area, it was so tender. I had no idea how they would insert the needle into the area. They called the surgeon to have a quick look and see if it was possible to use it so soon after it had been inserted. The surgeon felt that the area was too tender, and that for the first time the chemo should be administered intravenously. I have to confess that I was actually relieved by that.

A vein was quickly identified, and an intravenous line was inserted. Phew!  The nurse sat with me, next to her shiny trolley full of potions and syringes, and went through the process with me.  First they would run saline through to make sure that the IV was working and give some time for me to settle.

Then she worked her way through a set of different sized syringes, all of which contained medications to counteract the side effects of the chemo.  One of these in particular had a really strange side-effect of its own.  The nurse explained to me that I would have an itching sensation for a few moments – she wasn’t joking. It felt as if I had been invaded by an army of marching, biting red ants and I wasn’t sure whether to wriggle, giggle or blush.  I think I ended up doing all three to the amusement of the nurses. Next came more saline to make sure these meds were all washed through and then began the preparations for the first chemo dose. I knew that I would have two different types of chemo medications, each chosen according to the specific characteristics of my spaceship tumour.  At this point the nurse gave me an information sheet which described in detail the medication which I was to get,  its likely side-effects, it is purpose and rather gruesomely the fact that it was a bright red colour. Marvellous! As if having chemotherapy isn’t already something which feels very toxic – the red colour suggests danger as well as toxicity.  One of the side effects of this one was the fact that it will turn your urine pink!  Is this some kind of branding approach?  Pink ribbon, pink urine?

The bright red fluid was duly hooked up to the IV line and a mechanical, pumping noise ensured I knew it was being fed into my bloodstream.  The rhythmic noise felt like a whispering chant to destroy any cancer cells, I guess it was my way of handling it.

After half an hour or so, a beeping told us that the red med was finishing and the nurse fed the last of it through before hooking up more saline.

She then sat with me and went through the next information sheet about the second chemo med.  Similar side effects – hair loss, vomiting, nausea, suppressed immune system.  Great, bring it on and let’s keep moving forward because there’s no way back!

The second chemo medication was clear and innocent looking, but just as toxic, though without the pink pee after effect apparently.

The whole process took around two hours and I found it impossible to concentrate on anything except what was happening to me.  I could not listen to music or watch TV or read the book which I had brought. All I could do was lie and listen and wait until it was finished.

Finally after listening to the pumping of the medication systematically going through my veins the second chemo was also finished and the whole procedure came to an end with a final rinse of saline and removal of the IV line as well as advice about which foods to eat and avoid.

I was taken back to the ward feeling rather stunned. My head felt strange, something I can only describe as kind of buzzy. I felt disengaged from the reality round about me. Most of all I felt an enormous relief that this first dreaded treatment was finished and that I had got through it.

I was then discharged, my second hospital identity bracelet was snipped from my wrists. Again I was given a bagful of medicines, an appointment sheet for Dr W2 and I signed some forms, collected some cold packs and again found myself in the night air and returning to our studio apartment.

This time in my little bag of medicines there were some very important drugs – the side effect management drugs which would see me through the coming days, the ones which would become affectionately known as the Groundhog days.



Home sweet home

A really healing, peaceful and beautiful space – and it is home.  The fact I am also able to work from here is a real added bonus.

This is why I am always so keen to get back……………………….

It looks as if it might be after the next chemo, for a number of reasons, so early January when we get back. Until then I am peeking through the door (albeit in my mind’s eye)  just holding on to the memory and image of home.