And the 3rd event of the triathlon? The Marathon!

If chemo was the Boxing Match in this triathlon from hell, then I think Radiation is the marathon.

It feels non stop (even though it is for such a short session) because it is daily.  I have to keep ploughing on even though I am exhausted, and my legs are totally uncooperative!  Each session is like a mile marker, though there are 25 markers for me rather than 26.  However, if I include the long planning and simulation session at the start, we are indeed at a nice 26 sessions!

I realise that I approached this Radiation Marathon with the attitude that it would be a walk in the park after chemo.  In many ways it is, but because the chemo is so tough then it did give me a false sense that all other treatments would be “easy” in comparison.  I think the fact that I started radiation very quickly after chemo has also been a factor.  It is indeed great that I will be finished with the heavy duty treatments sooner (all being well, crossing numb fingers, peeling toes and even Twang Arm with non Twang Arm if that will help).  However, it has meant that I was a bit frail at the start of the Radiation.   In Yangon the Doctor I saw just before I came to Bangkok did tell me that Radiation is not easy, has its side effects and also often brings some depression.  Now when you hear “a leetle depression” with a lovely French accent it doesn’t sound so bad at all, in fact it almost sounds quite cute.  It doesn’t feel at all like the weepiness and grey feeling which descends most days.

Don’t get me wrong, the treatment is not painful, it does not involve needles (well not as part of the treatment though they still need to monitor blood levels – yuck!), and the side effects are not nearly acute or debilitating as they are with chemo.  But it is uncomfortable, lying totally still in an awkward position while the machine goes through its daily workout.  It is also quite boring, even with the music so I have started counting the beeps.  This also helps me keep on track and know how far I am through the session.  I seem to get 75 beeps every session, each lasts about 3 seconds.  Except for the 9th and 14th beep and one much later on – for some reason these ones last much longer!  I say that I seem to get 75 beeps because I usually lose count in the 30s!  Apparently everyone gets a different number of beeps or zaps, depending on their diagnosis, treatment required and calculated by the specialists and the computer.  I am also finding that Twang and other arm are already feeling stiff and sore.  I feel nauseous (but I hope this will pass) and still very weak and tired.  I also have some skin irritation from tape which covers the marks.  One part reacted and has blistered – chemo skin is still very sensitive and probably over-reacted!

I think the main reason it feels like a marathon though is that the whole day, if not life at the moment, revolves around the daily treatment.

On the positive side, I am passing those daily milestones fairly quickly  – 6 passed and 19 to go, so I have already completed nearly a quarter of the course.  I just have to keep ploughing onwards………

Pinocchio legs

I have been beating myself up a bit and getting frustrated because I am still feeling washed out.  Yes, I have turned the corner and am sure I am heading in the right direction, but I can’t find the accelerator or even the forward pedal.  Progress is so so slow – and so am I!  My legs are still weak and wooden feeling – I feel like Pinocchio – before he became human!  Walking is tiring and going up or down stairs is exhausting.  The neuropathy in my hands continues to bug me too. Radiation is ok so far though I am feeling quite nauseous and Twang Arm is getting stiffer.

Then I realise that it is only 3 weeks since the last chemo.  Time for another small celebration – if it wasn’t finished then I would have been back today for another session!  It also means that I should really start to feel improvement as I leave the chemo, particularly the cumulative effects of 8 sessions, further and further behind.

I guess that 3 weeks is not so long really and that I should just be a bit more patient and happy to keep moving in the right direction.  Having said that, however, having my own legs would be good to keep moving forward – enough of Pinocchio’s legs, time to swap back now!

2 down………..

………………………23 to go!

Yes, we’re off!  I have had 2 radiation sessions now so things are nicely underway.

I returned yesterday, Wednesday, for the first session after the mega planning on Tuesday.  Before I was shown through to get changed, I was told that there was still some work being done on the calculations and planning so I might have to wait a little longer.  No problem – the main thing is to get the details spot on so I was not worried about a delay.

More mind numbing reality TV – which I now call treatment TV.   I waited just over an hour, but during this time I was regularly updated, even by Dr C himself when the planning was finalised.

Shortly after, I was taken into the Radiation suite, where my individual mould was lying waiting for me.  Dr C asked me what kind of music I would like.  I was  so (pleasantly) surprised that it took me a moment to think of music I would like.  I did suggest that if they wanted me to keep absolutely still, then dance music was not a good idea!  Some gentle jazz was put on as I was adjusted into the mould and prepared by the technicians.

Before long I was strapped in, covered in a blanket and raised towards the radiation machine.  I was on my own with the machine now and soon it started moving, whirring and then beeping.  A bit too loudly as it blocked out some of the music at times!  The machine swung round to the other side and beeped at me from another direction, before changing positions and beeping another few times.  This carried on for around 20 minutes in all.

Finally, Dr C and technicians came back into the room – I could hear them but not see them, and they told me it was finished.  My hands were numb from trying not to move and my knees had locked so extracting myself from the mould took a few seconds.

Dr C was happy with the session and the calculations – now everything was set for the full course of radiation.

I forgot to mention something important yesterday.  When I was talking with Dr C after the simulation, I had asked him about all the markings  as there were so many.  He told me that this radiation therapy is prophylactic.  Now I think that is really good news.  He explained that the treatment is preventative rather than treating a tumour or cancerous area.    Even although I know the tumour has been removed, to hear the Dr say that there is no tumour to treat is sweet music to my ears.

Roast Gecko – Event 3 of the Triathlon is underway…

Yesterday was a really long day – we finally got home from the hospital at 9 pm after the Radiation simulation and planning session.

I arrived at the Hospital in plenty of time, so that I would be relaxed beforehand.  I knew it would not be able to compete with chemo for stress and anxiety but I was still not so sure what it would entail.  I was also a bit worried about Twang Arm as I knew I would probably need to move it beyond its willing range of motion.

The Radiation Technician spent some time with me, giving me briefing information about the simulation and about radiation itself.  She also told me that Dr C was delayed by traffic disruption caused by the Red Shirt protests.  He was on his way but would be a bit late.

That gave me time to read all the gory details about Rads.  It seems to have more side effects than I would like, but I know that these are not options.  If I want the best chance of recovery, I need to stop complaining about the side effects and gracefully accept the treatment!  Still, a suppressed immune system is something I have had enough of.  Pneumonia is also not something I want to experience again.  The briefing information does aim to deal with all types of radiation though, so I saved up some questions for Dr C.

I then had to change into a cute gown ready for the first simulation.  And for the shaping of my own personal body cushion.  I had to lie down in the position needed for the radiation (pulling Twang Arm as high as possible).  Underneath me was a kind of large, blue pillow case filled I think with polystyrene beads.  This was moulded around me, and the air removed to make this vacuum mould.  This mould will be used throughout the radiation sessions to hold me in exactly the same position and ensure total precision and accuracy in directing those gazillions of rays.  I was swung around and came face to face with the radiation machine above me.  It only seemed polite to say hello to it, which seemed to puzzle the technical staff!

Throughout this, and the CT scan, I was drawn on by special markers, to set out the parameters for the radiation.  I was a bit alarmed that the markings were as high as my neck and on my right side as well as left.

After this was finished, I was taken for the CT scan.  To my technical mind it seemed to be a combination of a spin dryer and a very large doughnut.  I was put on my mould and prepared to be slid towards the centre of the machine – the hole in the centre of the huge doughnut.  Now the space in the centre is very small, and I am not.  I knew I would not fit – it felt as if I was being threaded like a needle and felt very claustrophobic.  The technicians adjusted my arms and moved me over slightly as I slid towards the doughnut.  Sure enough there seemed to be plenty of room and the doughnut didn’t eat me, but I moved easily into the space.  An electronic voice warned me in very posh English, not to move and something in the CT machine started to spin.  Just like drying the washing.  I was moved back and forwards as the machine did its work, and as I tried very hard to keep totally still.

It is a very odd sensation and not in the slightest painful or uncomfortable, but I was very glad when it was finished.

I was taken back to the waiting room and told that they were now going to do the calculations and planning and do the first radiation treatment as soon as the planning was done.  That would take around one and a half hours so I was free to go and eat if I wanted.  After all that spinning and slithering the last thing I felt like was eating, so I opted to stay in the waiting room and watch mind numbing reality TV.

It seems that I am quite complicated.  The planning took longer than usual and it was well over 2 hours when I was called for the first radiation.  In the meantime I had been given my appointment book (they call it my radiation passport – how cute!) and we had gone through the process and timing.  I knew that I would have 25 sessions, 5 days a week from Tuesday to Saturday.  I will have a Sunday and Monday off!  Yay!  I will also have blood taken every week or so to see how the radiation is affecting my counts (no!!)  We negotiated that when I have bloods taken for my appointments with Dr W, I can bring those rather than have to take more blood (yes – result!)

So finally I was put back on my mould and line up for the first cooking session.  The lights were dimmed, switched on, off and I was raised towards the machine.  It buzzed, whirred and made some odd noises and then moved into a different position to have a go at Twang Arm.  I was reminded of my friend’s funny story during one of her Radiation sessions.  She had been highly alarmed to smell what she was convinced was burning.  It turned out someone’ was eating a barbecued/burnt lunch in a nearby corridor!!

Again, I knew that this would not be painful but I still found it quite scary.  I imagined sudden pain or burning, or melting of my port – mostly because I cannot claim to understand how this radiation works.  My lay mind only knows that radiation causes burns and cannot understand how this will not be painful!

Soon the buzzing and whirring stopped and I was swung back round to the original place.  The technicians explained that Dr C wanted to talk with me.

Once I was extricated from my mould and sitting upright, Dr C explained that more planning was needed and that they had not been able to do the first radiation session.  It seems I am quite complicated!  They need to be absolutely confident that the calculations and markings are all spot on.  However, he also reassured me that this type of radiation should not affect my immune system!  That is very welcome news.

So we had no option but to call it a day.  Dr C headed off to work on the planning and calculations and J and I headed home for a late dinner!

So no Roast Gecko yet, but let’s see what today brings……….

Another Google gift

I just love this.  Yesterday someone googled the question “How many blue geckos are left in the world?” Not only were they directed to Feisty Blue Gecko, but how about this?  FBG was the first site suggested!

I also found out that there is a very nifty little blue gecko (apparently the Phelsuma klemmeri) – details here …. and here is his picture from the same site.

Now that’s more exciting than chemo!!

Chasing the storm

I know this probably sounds a bit corny, but this picture really reflects how I am feeling.  The huge chemo storm clouds are there, but the greatest anger and strength of the storm are passing and the sun is starting to shine through.

The past three days have definitely seen a shift and the slight improvement I felt on Friday is still there.  I am far from running around (still hardly hobbling around!) but my legs are still less leaden and just feel that teensy bit “better”.

I know this is a long haul, and the taxotere effects particularly are going to be with me for some time.  As I write this, my nails are continuing to deteriorate and the neuropathy  (numbness) in my fingers and now in my toes is getting worse rather than better.  I also know that this can take weeks if not months to get better and I could be left with a slight loss of sensation permanently.

But, I feel better so that makes a difference!

There is another reason why these pictures are significant for me.  I took the photographs while traveling last September, only 11 days before I discovered the lump and my view and my world changed.  I know I was oblivious to the presence of the lump when I was focusing on the what was happening around me and I can’t quite remember what it was like.  It feels like a lifetime away.

Is something stirring in the depths of the chemo cave…….?

I really feel as I have been stuck in a dark place the past weeks.

Physically, I have been at an all time low (thanks, Rocky and pneumonia – you make a good double act!)  I am so fatigued and weak I struggle to get around and this seriously limits how much I can get out and about.  I know my immune system is non existent so I know it is also wise to avoid people.  I have been very aware and nervous about getting caught by another infection so all in all I prefer and feel safer staying in my cave.  The other side effects are heavy too.  My fingers are numb and painful so writing is difficult, opening a water bottle or doing up buttons is difficult.  Doing most things for myself seem to be difficult.  Fluid retention means I am uncomfortable all over, and the port area feels really tight.  My skin is very dry and super-sensitive and is peeling and blistering on my feet. My digestive system feels (and acts) as if it has been wrecked after dealing with the bouts of toxicity.  I feel as if I have been lying in a dark cave, every new day the same as the previous day and not a sign of feeling any better at all.

Mentally, I have been unprepared for the dark space.  I knew I would not be celebrating and partying to mark the end of chemo, but I did hope to at least have a mental boost and feel a bit hyperbombastic!  However, I have been full of dark thoughts, about recurrence, having to deal with chemo again at some time in the future, about never feeling fully recovered and feeling helpless against the enormity of the strength of cancer.  I know it is not like me, but that does not make it feel any better.  I think part of this is also the strange and almost illogical feeling that with chemo finishing I am no longer throwing everything I can at the cancer beast.  If I hate chemo so much, why do I feel this way?  Of course, it is not chemo itself I hate, it is the fact that it has made me so sick.  I know that I am really grateful to the chemo and that it is giving me the best chance of recovery.  I think that feeling so low physically is feeding the emotional darkness.

I have been lying in this dark, chemo cave too long, but I have been unable to find a signal that I can drag myself out of it.  Until this morning. When I awoke this morning, I headed as usual to the bathroom.  Incredibly, my legs felt different.  They felt just a little lighter, not so leaden and I was able to walk across the room more easily than the past days and weeks.  I also felt just a little lighter in myself.  I know that sounds odd, but it is not something specific I can describe.  I just felt a touch less – sick and miserable.  I have capitalised on this throughout the day, making sure I am more active.  We made the effort to head out, even if briefly, and do a few tasks.

This must be the turning point.  Although radiation is due to start in a few days, I am not going to be confronted with another session with Rocky so surely this has to be the start of feeling better?

To make sure it is, I have searched for an image of a cave which reflects where I want to go rather than where I am coming from.  It is a meditation cave – a place of spirituality, life, light and inspiration.

I know the path ahead is a long one, but I am sure I have reached the lowest point now and can finally more onwards and upwards.

Happy New Year!

This week marks New Year for many – Nepal, Thailand, Myanmar, Sri Lanka to name a few (where I have lived 🙂 ) – so here’s wishing a very Happy New Year to all who are marking the New Year.

I am still really struggling with those horrible Taxotere side effects and so I thought it would be good to make my mind focus on last year and the New Year I celebrated in Sri Lanka., because it was a really special one.

I was lucky enough to be invited by a friend and colleague, to spend New Year in the south of the country.  I spent a fantastic few days with my friends and colleagues.  The break was a mix of tradition, spiritual, adventure and fun!  It is very odd to think back to a very different pre breast cancer life and although it is rather beyond my current thinking that I will be able for such times again, it surely can’t be impossible.

On the 13 April last year, New Year’s Eve, we drove down to my colleague’s family home in southern Sri Lanka.  We stopped off at the main sights and places on the way down and really it did feel like a holiday!

Fresh coconut juice in Matara

Dondra Head Lighthouse, at the southern most tip of Sri Lanka, and also the tallest light house in the country.

and looking immediately to the south – next stop the Antarctic!

That evening, we all went to the nearby temple for New Year rituals.

along with many families

and some very tiny people!!

On New Year’s Day, 14 April, the rituals start early – we were all up around 4 am in time for the ceremonial lighting of the first fire of the year, in the kitchen.

The timing for this is critical and needed my friend’s sister in the living room, waiting for exactly the right moment, provided on national TV.

With the fire lit, the first tea is brewed and the rituals can all proceed.

Including the important ritual of sending New Year text messages to everyone!

After the rituals and breakfast, we headed to nearby Bundala National Park – a wetland bird and wildlife sanctuary.  My friend, colleague and host was  also local expert!

We had a wonderful day, cameras working full time to capture everything we saw.

The day came to a close as we visited a mountain monastery and temple overlooking the southern plains of Sri Lanka.

And my favourite image of this New Year Adventure?  This picture captures the whole spirit of the break – a special time, with special people and very special memories.  Happy New Year and thank you!

The guilt factor

Once that diagnosis touches you, every headline and news article about breast cancer is more immediate and poignant.  I was saddened to learn that Martina Navratilova has been diagnosed with breast cancer, and at the same time fascinated at how the news is used to convey different messages.

There is plenty of detail available about her diagnosis, and her very optimistic prognosis.  My interest is more in some of the underlying issues which a higher profile diagnosis brings to the surface.

The frankness and openness which Martina has displayed are very welcome, particularly when she talks about missing screening mammograms.  She was also very frank in her surprise at her diagnosis, because of her very fit and healthy lifestyle and was quoted saying  “I’m this healthy person, I’ve been healthy all my life, and all of a sudden I have cancer. Are you kidding me?”

This brings forward a whole discussion about the role we all play in our own cancer, or even more so, what we feel we could and should have done differently.  A wealth of information and research is available of how to prevent or decrease our risk factors and reduce our probability of getting cancer.  Healthy lifestyle, exercise and diet all clearly play a role in reducing the probability of getting cancer.  The difficulty with this is that it increases our feeling of guilt and responsibility of contributing to or causing our own cancer when we are diagnosed.  As soon as you get that diagnosis, you seek to understand why and we are too often quick to blame ourselves.  Guilt comes easily when we think of things we could have done differently.

I think I am a fairly well informed individual, yet I was unaware of some of the risk factors of breast cancer.  And my risk factors were mixed to low.  Furthermore, there are probably as many factors out of our control as well as within our control.  It is highly unlikely that we would know for sure what has been the cause or main causes of our own illness.

I feel that we have enough to deal with in our diagnosis, in the heavy treatment path and all it includes and in being faced abruptly with our mortality.  Of course there are lifestyle changes we can and probably have made, following our diagnosis.  But how do we make ourselves feel less guilty and as if we have brought this on ourselves?