Shopping in Bangkok for the new look (one for the girls;))

One thing I have found about being treated in Bangkok is that the medical attention is first class – truly excellent. I’ve also been really fortunate that I’ve never had to wait for appointments, treatment or surgery and test results come through very quickly. I am also informed of these results in person and can ask as many questions as I want. However, I think it is fair to say that I have struggled quite a bit on some of the softer elements of dealing with breast cancer. I have managed to find and get involved with some online forums for women like me which has been really helpful. I have also learned that in the UK and US for example there are quite a lot of support systems in place for women with breast cancer such as counselling, health and diet sessions and support groups.

One of the biggest mysteries that I’ve had to deal with is what on earth to wear once you have had a mastectomy.

Still with a few ideas which I’d gleaned from the websites I decided to head to the shops and try and find something practical and comfortable for my new shape as well as something under which to hide the bald head.

A number of people had recommended that we visited the Emporium shopping centre. This was promising because it has a huge section with all kinds of undergarments so we were fairly confident that I would find something there which would cater to unusual women like me. I hunted and hunted amongst the ranks and indeed I did find some prosthetics but they certainly didn’t seem to be geared towards the mastectomy market. In fact many of these were in pairs and perhaps more suited (and intended) for Bangkok’s of lady boys rather than women. My concern was more about finding some garments that I could wear which were comfortable and gentle. I asked the assistants and after a number of false starts I was finally shown a couple of bras with the pink ribbon logo on them. However there was a grand choice of one style and not very many sizes. Additionally it really didn’t look terribly comfortable and not something I could wear close to my tender scar. After searching and searching one of the assistants realised what I was looking for and showed me a leaflet which advertised another branch of their shop in one of the larger shopping malls. This looked really promising as it referred to a tailor-made service for women who had undergone surgery and for women who were looking for equalising bras (equalising bras? That’s a new one!). So we jumped back on the skytrain and off towards Chitlom. We quickly found the right place and asked for the special service which they offered. Blank looks. Confusion. I showed them the leaflet and finally they led us to a rack which had on it exactly the same bra as there had been in Emporium. I asked about the measuring and the tailor-made service and was duly measured and then led to the general racks and shown the regular wear in totally the wrong size for me! I saw a few different makes to those which have been available in Emporium and started to hunt again around all of the various racks. Finally I found something which looked reminiscent of a teenage training bra and seemed very soft and gentle.

I was also clutching a rather odd looking shape which looked a bit like a child’s soft toy, and could perhaps be a rabbit without ears. This was another product from the pink ribbon rack and was a soft fabric false breast. It was pretty inexpensive and I thought it would be useful just to have and if I was able to wear it I might start to make me look semi-“equal”.

It had taken nearly 2 hours to get this far and I finally left the store with my new equipment. My next quest, although I was really running late, was to try and find something to hide my baldie head -a wig!

We asked around and were told to try the second floor as they were wigs there. These also took quite some hunting but finally we spotted some hairpieces in one corner of the second floor. There was not much choice and on getting closer we realised that there were only half a dozen wigs and the rest were all hear pieces or extensions. An extension is not much good when there’s nothing to extend it on to. Out of the half dozen wigs there were two which were possible so I tried them both on. What I hadn’t realised was that the colouring was geared towards Asian colours. I tried the first one on it was too long and it was too thick for my head. The second one was shorter and on the model looks quite nice. However with the dark colour of the hair and the pallor of my post chemo complexion I looked alarmingly like either a goth or a vampire. To be fair it would probably suit the purpose but there were so few choices that I really felt it was not sensible to splash out and get this when I hadn’t tried any real alternatives.

By this time I was extremely tired, twang arm was squealing and I was still feeling a bit rough as it was the end of the groundhog days. So I returned to our apartment not quite empty-handed but certainly not with the goodies I had been hoping for. At least I had one teenage training bra and the odd looking falsie which could always double as a rabbit with no ears.

In the big wide world – after the big wide surgery

I need to pick up the next part of my story. I last filled in the detail just as I had left hospital. So this will focus on the first days after leaving hospital.

I was discharged from the hospital on Monday evening (12 October) and took with a little goodie bag bursting with medicines which I had to take over the coming days.

We were to be transferred to a small studio in a nearby apartment block . The hospital bellboy porter escorted us and took our luggage in the same way but in the opposite direction as he had when we arrived. Within a few minutes we were dropped at what was to be our new home for the coming weeks. I don’t remember much more of that evening as we really just unpacked some essentials and tried to to settle in.

The most nerve wracking thing was that we had absolutely no idea how long our stay in this place might be. The only certainty I had was an appointments slip for the following evening with the surgeon.

In my goodie bag was a rare assortment of all kinds of medicines. There were anti-inflammatories, painkillers, sedatives, antibiotics and goodness knows all what else. I had to take some before breakfast, some after breakfast, a different one after lunch, another after dinner and some at night time. Each different medicine was packed in its own little plastic bag with its own instructions. The only way I could organise myself was to take out every single plastic bag and place them in front of me was the then I would read the instructions after each meal or known medicine taking time. If I was instructed to take the medicine at that time, then I would take it and then put it back in the bag and if I was not instructed to take medicine then I would replace it in the bag. I had to go through this process until there was no more medicine left in front of me.

Tuesday was devoted to settling in, unpacking and getting our bearings. In the evening I returned to the hospital for the due appointment. It was nice to see Doctor W again as he was back from his breast cancer conference. He also seemed pleased to see his handiwork. He checked my progress, dressed the wound and of course asked me to wave twang arm in the air. Twang arm was having none of it and refused to budge above elbow height. Doctor W noted that my painkiller was paracetamol and said that I should have something a bit stronger as twang arm was still painful. I accepted with grace and gratitude – and a grin. I left the hospital clutching my new pills and another appointment slip for the following day.

On Wednesday morning I awoke feeling a good bit better. Twang arm was definitely feeling less painful and I was able to move more easily. These painkillers were clearly helping. In fact I felt so good that we decided to brave the outdoors and head out shopping. I was in urgent need of some new shirts because I was no longer able to wear most of my tops. So we got ready but just as we were preparing to leave I felt a bit unwell. I lay down for a little while until it passed, but it didn’t pass. In fact, I started to feel really weird and quite dizzy. Lying down didn’t help. I started to feel worse and had that frightening feeling that I was going to faint. I was scared because I was worried that my blood pressure was really high and that if I fainted or lost consciousness then it could be serious. I did what you do to prevent a faint – the only thing I could think of, putting my head between my knees. By this time, understandably, J was really anxious and stressed. He was trying to phone the hospital while I was insisting (to his feet) that I was fine. But the dizziness did not ease and I got more scared. The problem was that as I was trying to lower my head while protecting my wound I was grabbing his trouser pockets and he was unable to extract his phone. Part of me felt really stupid calling a doctor for a silly faint and part of me was really scared that it was something very serious.

Finally J was able to speak with the hospital and they dispatched a team to check me out. It was like something out of a TV drama – a number of brightly attired people filed into the room with equipment and supplies and what looked like a sophisticated resuscitation unit. I couldn’t even sit up because of the dizziness. The medics gathered around me to try and assess what was going on. They asked a few questions, checked vital signs and were preparing to take me to the ambulance. I asked if they need to check the medications I was taking because there were so many of them. As soon as they saw the painkiller which I had been prescribed the day before, there was an audible sigh of understanding. The young medic made a spinning gesture with his forefinger beside his head – the international code for dizziness! It was clear that this painkiller had a very common side effect. They were in no doubt that my symptoms were a reaction to that wonderful release from pain. How unfair is that? And here was me, not a full day out of the hospital and here they were setting up an IV line, taking blood and injecting another medication into my system to counteract the side-effect. So that was my shopping trip and pain relief sabotaged.

 My outing for the day was – yes, my trip back to hospital for my check up with Doctor S. He was not surprised to hear of my reaction to the painkiller but he was surprised when I insisted on giving him back what I called the dangerous drugs. The detailed results from the pathology had also come back and Doctor S spend a nice bit of time going over the results and their implications. Apparently I tested positive for reaction to oestrogen I have no idea what that means but Doctor S was happy and said it was a good thing. I tested negative on the other two tests and Doctor S had a very warm and sincere smile on his face as he explained to me that these were actually the best results I could have in the situation. It meant that my chances of recovery were higher. Apart from the day’s drama my progress was continuing and he gifted me an appointment to see Doctor W — for the very next evening. It had been a whole 48 hours since I had been discharged from hospital.

Twang arm updates

How about this then?

Twang news 1

I took twang arm swimming on Wednesday – well, swimming means kind of bobbing around in the pool.  I did manage about four extremely gentle breadths though and then more bobbing.  It was unbelievably good!

Twang news 2

I managed to straighten twang arm!  The excercises are helping for sure, and progress is really slow but the fact I can actually straighten my arm is a real step forward. 

Next milestone?  How about peeling a banana unaided??

Sundance

What a difference a week makes!

We were cleared to return to Yangon at the weekend, and got the necessary bits and pieces in place to travel, including a “fit to fly” certificate.  Orville theme again?

Monday was a long day for a short flight, but on landing I felt a huge weight lift from my shoulders and a real sense that we are in the right place.  All reinforced by a warm welcome at the airport and flowers waiting from me at home.  And most of all, delight at being back in our healing, peaceful home.  

When we left while it was still rainy season and 7 weeks later, we arrived in clear, dry season.  The air is cooler and less humid and the sky a deep, clear blue.  The garden is still lush and full of colour.

I know it is a respite, I know I will be going back to Bangkok in 2 weeks for the next chemo and more Groundhog days.  But I also know that there are these wonderful sunny (in every sense) days in the middle to rebuild my strength it makes this whole journey smoother and more bearable.

More soon………..

Groundhog Day

Oh dear, oh dear, oh dear.  No updates and still gaps in the earlier part of the story.

The past few days, life has really felt like Groundhog Day.  I wake up, and then realise that it is just the same as yesterday.

But then it has quite a tough week.  On Sunday morning, I had my appointment with the oncologist and preparations and checks for the second chemo treatment.  Hair loss continued and on Tuesday I had to face up to the inevitable and did have the remaining hair shaved off.  Wednesday saw the end of the side effect meds and I had a truly horrible day.  Thursday was marginally better, perhaps.  And today is Friday, and another Groundhog Day.  I woke up, checked – yep, still bald, yep – still feel rotten, yep – still got 6 more sessions, and of course – yep – the past 6 weeks has not been a dream and this is all real – hey it’s another Groundhog Day!!

And just to add insult to injury – I planned my Chemo treat 2 for Tuesday so that it would counteract the shaving trauma.  I decided to download some feisty, lively music for my ipod and make up some playlists.  And what did I achieve?  I managed to lose my complete ipod library, lose half of the downloads due to some hard drive malfunction, and of course synchronising the ipod I managed to lose all my old music!!!  Who’s a clever girl then?!!

And in case you thought this might not be a conspiracy?  The only movie channel on TV is back to playing one film on a loop – THE BUCKET LIST!!!!

Tomorrow will be day 6 though after the chemo, so I should, should, should feel a good bit better and hope to be able to update this a bit more.

Half way house!

I still have a lot of detail to fill in from the earlier days of this story, but here is a quick update from what is definitely half way house.

Firstly, on the chemo front.  Chemo 2 was on Sunday – I will have 8 sessions, so I am half way to half way through the chemo.  I will be filling the details on chemo later so look forward to that, in case you have run out of grim reading or horror movies 😉 .

And on the hair?  Today I am going to be brave (well that is the plan just now) and just get my head shaved.  It is now at that horrible stage where it has thinned visibly and you can tell that my hair is going.  It was ok really until Sunday (yep chemo day) and cruelly when I was feeling fragile about the chemo, it decided to make itself visible (or should that be invisible)?  So a few days ago, even with the short crop, I could get away with it albeit leaving a trail of mysterious hairs behind me and on the pillow.  Now I have to face up to the inevitable.  It is strange though – it is just such a huge psychological step and I am NOT looking forward to it.  I know it will come back, I know it could come back different (and nicer) perhaps thicker and perhaps a lush brunette.  But all of this is light years in the future.  I know that in the meantime I can disguise my bald head with wigs, scarves and other headwear.  But no matter what, I will still have that strong visible signal that I have cancer.

PS.  Insult to injury?  Yep, the leg hair is as strong, healthy and present as ever!  Now who do I complain to about that?!

A Node to a Lymph (not to be confused with An Ode to a Nymph!)

Before all this I had of course heard of lymph nodes, but I had never given any thought to what they are, what they do, how many we have and what they look like!  Waking up with mass theft of lymph nodes and the unexpected discomfort (ie PAIN and TWANG), naturally made me curious about these weird things we all seem to have.  And even though I knew nothing about them, I realised that I did have a lot of pre-conceived impressions about them.

Pre surgery I did not really have much idea of what they really are except that they are hidden away somewhere and get swollen sometimes.  Apparently lymph nodes belong to the immune system and are found all through the body, and act as filters or traps for foreign particles.  (Thanks, Google 😉 ).  That is why they are often tested for signs of cancer cells, in order to establish if the cancer has spread at all. Hmmm.

In my mind I imagine a lymph node to be a little bit like a tiny, baby octopus.  So the thought of having 15 removed from under one arm is really weird – that is an impressive swarm!! No wonder the upper arms can get a bit flappy!  I was really disillusioned to see them described in several (thanks again, Google) places as “small bean shaped organs” Beans??   How disappointing!

I was also mildly disappointed to learn that there is no definitive number of lymph nodes – we all differ.  Well, all I know is that I have 15 less now!

And today’s update? In summary – chemo and hair.

It is Day 20 since chemo 1 and I have now only 3 days to chemo 2.  I know that the side effects are well managed and much less harrowing than they used to be, but I can’t pretend that I am not anxious and nervous about so many aspects of the chemo and the next session.

Everyone experiences it differently and this is how it seems to be affecting me after only one session.  In addition to twang arm, I have heebie jeebie skin – sensitivity which makes my skin creep in changes of temperature and where it touches my clothes.  My scalp is also surprisingly sensitive – so sensitive it is painful when I lie down and it is hard to put my head on the pillow – it’s not so easy to sleep with your head peeking upwards!  My ribs ache and my skin is super dry.  The incisions from the second surgery seem to be taking a long time to heal and I still have bruising from where my USB port was put in (it still doesn’t work for downloading music so I hope it works for chemo 😉 ).

But the worst thing is the most well known side effect of chemo – hair loss!  The update is that I still have hair and still harbour this illogical dream that I will be one of the few who only experiences thinning.  The evidence indicates otherwise.  I am reminded of that old song “Hair on my pillow, and on the floor, a trail to the door” or something like that (apologies to Little Anthony and the Imperials).  I can’t understand how so much is coming out, but it doesn’t seem to be noticeable yet when you look at me.  Still, I had a visit to the hairdresser on Tuesday to crop it as it apparently comes out in patches rather than neatly.  The main reason was actually more psychological though.  The thought of moving straight from hair to no hair freaks me a bit, so this is a way of moving towards baldness in stages.  It was still horrible, sitting in the hairdressers knowing that the next step will in all likelihood be the razor (and apparently that is when the scalp stops hurting as it is caused by swollen follicles).

And when the hair disappears altogether we reach a new phase of reality.  Time for another rain dance!

The days following the surgery (6 – 12 October)

The next bit of the story………….

My memories of the days following the surgery are fairly random.

I was so sure that the surgery would be radical since the Friday evening tests and meeting with the Dr, that I don’t recall being shocked.  I do recall being surrounded by my various “accoutrements” – two drains and the IV drip which pretty much kept me from me from running up and down the corridor.  That and what is pleasantly called “the wound”.

What I hadn’t expected was the pain and discomfort from the lymph node manoeuvres.  The surgeon had told me that a number of lymph nodes had been removed and this left a pain, stiffness and really odd sensation of numbness and incredible sensitivity up and down my arm, under my arm and even in odd places like my left cheek and ear!  I persuaded the staff to let me go the bathroom and it was like an excursion with all the helpers taking my accoutrements and helping me and my stubbornness a few feet across the room.  I felt much better being able to get up, though had a wobbly moment when I saw my reflection in the mirror and realised how much swelling there was.

I was unable to move either hand and had great fun trying to eat.  I ended up having soup through a straw and being fed the solids like a baby for the first day or so.

The biggest thing on my mind was waiting for further pathology results following the surgery.  Dr S told me that we needed to find out how many lymph nodes had been affected and what strain the cancer was, as well as results on oestrogen receptors etc.  These results would shape the treatment plan and indicate my prognosis.  They would tell us how aggressive the cancer was, and whether it had spread beyond the lymph nodes.

There was a regular stream of folks coming in and out of the room – nurses checking vital signs, bringing all the medications I had been prescribed and making sure I was comfortable, staff bringing and removing meals, visitors passing through or based in Bangkok and a daily visit from the doctor to check on “the wound”, changing dressings and checking on the drains.  I was allowed to use my mobile phone after a while, and took a number of calls which was really comforting.  We had a phone in the room too, though it only seemed to ring when I was on my own, and I couldn’t reach the wretched thing so I still have no idea who phoned!  We also had a TV and internet in the room and I have a clear recollection of the film channel showing “The Bucket List” on a loop – needless to say, I was in no mood to watch that and was much happier when it was replaced by “Mamma Mia”!

Later in the week I started venturing a bit further, and headed with J down to the lower ground floor of the hospital.  It is a bit like an airport with two levels, one for arrivals and one for departures.  The hospital had a ground floor level with the Counters (mainly out patient clinics) and a classy foyer with a grand piano.  (A pianist plays every evening and Sunday afternoon, for patients of the night clinic who are nursing aches, pains and anxieties).  Then an escalator takes you to the lower level which has a small supermarket, bookshop, a couple of clothes shops, like 70s boutiques, a food court with every type of cuisine, a bank, a hairdressing salon and Starbucks!  It was very odd walking around what felt like a shopping centre in hospital pyjamas and my drains in a neat little bag.  The nursing staff gave me the little bag as they said the drains did not look beautiful!

On Thursday, Dr S told me that some of the results were back from the pathology.  He explained that 12 lymph nodes had been sent for analysis and that 3 showed cancerous cells.  The results which would inform what strain the cancer was and the other information would come later.  When all the results are available the surgeon, pathologist, oncologist and other specialists would get together to identify the treatment plan at a “tumour conference”.  I am not sure if the spaceship was also allowed to attend. J

I was pretty relieved that only 3 out of 12 lymph nodes were affected and was focusing more and more on trying to get the left arm moving a bit more.  The Dr said I should be able to hold it above my head – but there was not a chance of that.  A gentle supported lift could not lift it very high without the arm twanging alarmingly – hence twang arm came into being.

I was never good at maths though, and what I hadn’t realised was that the 12 nodes which were removed and sent for analysis, were in addition to the initial 3 which had been sent for frozen section.  I learned a few days later, that this meant that 6 out of 15 nodes were affected.  Not so much of a relief.

Amongst my assortment of drugs was a mild sedative to help me sleep at night.  I am not used to sleeping pills so I decided after a few days that I would try and do without, so that I didn’t get too used to them.  I had thought that sleeping pills gave you weird dreams, and this is something I am normally very good at.  So I was really surprised when I had vivid serial weird dreams all night long.  This included a visit to North Korea and staying in a cottage with some colleagues, which was built on a reconstructed dinosaur skeleton.  Enough of that and straight back on to the sleeping pills!!

Perhaps that is why I was discharged?  I was lucky in that the first drain was removed around 5 days after surgery and the second a couple of days after that.  So when I was discharged, it was just a case of snipping the hospital ID tag and trying to get proper clothes on to face the outside world and move to the studio flat which was going to be home for the coming weeks and days.  Clutching a bag bulging full of different medications and appointment cards for the different Doctors I stepped outside into the warm night air and into another phase in this new and different world.sunrise