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!

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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?

Time for a nap!

This post is going to be a moaning one I am afraid.   But then, hopefully once I have offloaded, downloaded or overloaded, then I will feel a bit better!

It is nearly a week since the final scheduled chemo, and I cannot believe how tired and frail I feel.  I know that the blood counts get to their lowest a week after the treatment, so it is not surprising that I feel very weak.  It is frustrating though, that even standing for a few minutes is exhausting, walking any distance is difficult, and going up and down stairs pretty impossible.  My knees start to shake and I have to sit myself down at regular intervals.

And sleep!  Goodness, I think I could be sleep champion of the world!  I flake out at night, sleep for a good 9 – 10 hours and still need a morning and afternoon nap!  How skilled am I?

As for the outside world, I am pretty oblivious to what is going on.  This is probably just as well as my chances of getting chemo treat 8 have been significantly reduced because of the colourful activities affecting many parts of central Bangkok. I have made my choice of treat, though, and might have to be patient as I look at alternative ways of getting my hands on what I am after!  That will be the topic of another post, I am sure.

Now it feels like time for another nap – more soon!

Feisty aliens – Lost in Space?

Lost in cyber space?

I have my views about whether Google is a good thing and had reason to reflect on this last week.  I also have views about whether we can live without Google!

WordPress have a fancy function of telling you, not just how many people visit your blog, but also if they are referred from other sites or search engines.  So I was highly amused to see that one visitor was referred to my blog after keying “feisty aliens” into Google.  They were directed to this rant.

Can you imagine how disappointed they must have been?  Looking for feisty aliens and landing up on a lurid account of breast cancer and the side effects of chemotherapy!

Thanks Google for thinking of me – it is good to know that I come up somehow on a search engine!!

Signed up for the Cookery Course

It’s all action.  The side effects from Chemo 8 are descending heavily, as are the side effects from the white cell booster.  My neck and shoulders are aching, mouth is tender and painful and teeth sensitive.  My fingers are numb and sensitive, my legs are buckling underneath me and even soft gentle bananas are giving me horrible heartburn.

So what better to do than get signed up for the next stage!  Dr W2 had set up my consultation for Radiation Therapy for Tuesday (yes, yesterday!)   Radiation will be carried out at the Cancer Hospital as there is only one Radiation Centre in Bangkok.   I had an appointment to meet my Radiation Consultant, Dr K, at 2 pm and had no idea what to expect.  Please, please no needles or awkward Twang Arm manoeuvres………..

After the registration and administration procedures, we headed to the Counter and waited to see what was next.  Soon I had the usual Blood Pressure, weight and temperature checks and some concern expressed over bruising on my hand.  The nurse was surprised that this was from the blood test last week, until I showed her the marks from the IV!

In no time, we heard Dr W2 arrive and drop an envelope on the counter, accompanied by my name.  Very soon afterwards we were ushered into Dr K’s room.

He talked us through the process for Radiation.  It would start around 3 weeks after final chemo.  There will be 25 sessions – 5 a week over 5 weeks. He suggested a start date of 27 April. The first session will be a computer simulation using CT scan and they will work out carefully how and where to target the rays.  Because my cancer and surgery was on the left side, there needs to be particular care to make sure my heart is properly protected!

I had a long list of questions and he patiently took me through the process. We talked a lot about the effects of Radiation and while it is very different to chemo, it is not without effects too.  The skin will usually develop a kind of “sunburn” after 3 – 4 weeks of the treatment and it is difficult to predict how each person’s skin will react.  I have very fair skin and tend to burn easily so I expect this might be quite uncomfortable.  I was advised not to use any creams immediately before treatment as some creams can have ingredients which react with the radiation.   I asked my questions about being in Belarus a few years after Chernobyl and possible radiation exposure.  Apparently any exposure I might have experienced then is nothing compared to the 5000°C which I will get with the Radiation Machine!!  How many?  I am sure I have probably got that wrong!

Through our discussion there was no sign of a needle or a need to wave Twang Arm around.  🙂 But there was one piece of not so good news.  During the 5 weeks of Radiation I will not be able to swim.  I have to avoid any additional irritation or possible infection so swimming is completely out.  I will miss that terribly but I guess I can cope for 5 weeks?

We saw Dr W2 again after the consultation and in the meantime, he had spoken with Dr K and brought the start of the course to the 20th April.  This means a quicker finish which is very welcome.

So here I am,  all signed up for the next event in the Triathlon from Hell – the Cookery Event!

The final instalment of Chemo

Yesterday was really quite a strange day.

Firstly, I did not have my usual pre chemo, mega jitters and nerves.  I am not quite sure why not.  Part can be attributed, I am sure, to the uncertainty about whether or not I would be well enough and therefore there was no point in being too scared.  Logical, no?  But in fact, I think it was more due to the fact that after 7 chemos, a bout of pneumonia and the scary IV antibiotics, another chemo and its familiarity finally did not feel just so intimidating as it used to.  Ironic, no?  Why could this not have kicked in 5 chemos ago?

I turned up at Counter 2 as usual, handed over the slip and when the nurse said “blood test” I made sure that this would be taken by the oncology 5th floor staff.  I waited for a while but no sign of the familiar all white uniform for quite a while.  Then a porter arrived to take me to the 5th floor!  Unexpected, but never mind, I followed to the Oncology Ward and there was shown to my room and waited for the nurse.  She expressed concern about my recent infection and said that there might well be a delay but it would depend on the blood work.  I asked if we should put on the numbing cream or not if it was unsure.

“Oh, yes.  Put it on!”  She was clear – if chemo was to go ahead then much better to be prepared.  AFter all, the cream could easily be wiped off if not.

She struggled a little to find a space to draw blood and my poor little vein was still tender.  Again the blood was reluctant to clot and required a good bit of pressure to stop the bleeding, which was really quite painful.  I have to stress though, that as ever, these nurses are just amazing and ensure that this is as painfree as possible.

So we headed back downstairs to wait for the results to come through and to see Dr W2 and her the verdict.  I had my other BP, temperature and weight checks and all was well.  Although I was a bit surprised to see that I had lost over 3 kilos in the intervening 3 weeks.  Hmmm, did the pneumonia do that or is a sign that I am really struggling to eat properly now?

Finally we were called and took ourselves and the X Ray from Yangon into Dr W2’s room.  He went through the blood tests and said that my white cell and neutrophil counts were normal now, and red blood counts had gone up enough to allow chemo to go ahead without transfusion!  Amazing what determination can do!  He then had a listen at my chest and seemed happy that it sounded clear.  He had a look at the X Ray from Yangon and immediately ordered a follow up X Ray.  He felt that I had had a virus as well as the bacterial infection which is why I had gone down so much and also why the monsterbiotics and IV ones had taken a while to kick in and for the fever to go down.  His verdict?  With satisfactory blood work, no fever and apparent recovery from the infection, pending the review X Ray, he felt 90% sure that chemo 8 could go ahead!  Gosh!

So we were carted of to imaging and I had a super fast X Ray with no comments about biopsy scars.  Within 10 minutes the results were with Dr W2, he had reviewed them and I was pronounced fit for the final zap.

We were escorted back up to the 5th Floor and back to the room where I had been earlier.  On with mind-numbing reality TV – my usual strategy for dealing with port preparation.  I seriously recommend it for the whole chemo process!

For the last time, I was prepared, the numbing cream wiped off, the area swabbed and sterilised, surgical gauze placed surrounding the area and then the ripping of the package which signified the port needle.  OK, the usual, breathe in, breathe in, breathe in…..hold…………… and for the last time the needle was in.  Phew!  No final surprises or problems with my wonderful port.  Did I call it wonderful?  Hmm, a strange time to develop a more positive relationship with my port!!

The series of syringes with anti side effect meds went in first and a vicious army of biting red ants marched again as I squirmed awkwardly.  Each time they seem to bite a bit harder and I find it increasingly uncomfortable.  The nurses find my reaction really amusing!

I had half an hour of saline after this to get the side effects well flushed and then the final taxotere was unceremoniously brought in and hooked up.  Have a look at the label in the pic, and all its detail……………..

As always, it is infused slowly as it has a high risk of allergic response.  For over one and a half hours it worked its way into my system until finally the machine beeped to signify the end of the infusion, and the nurse monitored as the final drops left the bottle and entered my blood stream.

Another series of syringes and the final anti clotting agent and it was time to remove the needle.  I breathed in, in, in- and held and out came the needle.  And then the weirdest thing happened.  I was completely overcome, and cried like a baby at this decisive moment.  It was totally unexpected and I am not quite sure what happened.  I think a mix of relief, disbelief that it is finished, and after months of holding things together during the chemo procedures I was overcome by the enormity of what I have been through.  I have since heard from many other women that they also wept buckets at the same point.  It reminds me a little of when you are in the midst of a family emergency or crisis and you just have to keep everything together, but when you are told everything is all right, that is when you crumble.

After the crumbly moment, I gathered myself, switched off the reality TV and got ready for the outside world again.  I will come back and see my 5th floor angels to thank them properly once I am clearer about the next steps and less wobbly.

After the usual signing of papers and collecting another bag full of medication, we were back out in the warm evening and quickly home.

I am still having a bit of difficulty letting it sink in that Sunday 4 April really was the 8th and final chemo.  Rocky (1 and 2) and I have finished our 8 round Boxing Match and the score seems to be Rocky -8, FBG – 8!!  But I have this naughty compulsion to run up behind him when he is not looking, and tweak those sensitive little hairs behind his ears and bring him to his knees like he has done to me!!  Maybe I will keep that one up my sleeve!

Chemo might be done and dusted, but there is no chance of dust gathering under my feet.  Final chemo was yesterday, and Radiation Therapy Consultation will be tomorrow!  Things are moving rapidly forward.

The most important thing is that I know that once this set of side effects pass, then I will start to feel better and slowly recover.  I hope that I will get my strength, energy and immune system back gradually – and I hope that means I will start to feel well again. I can’t wait!