A new favourite quote

I keep finding quotes I really like and thinking I must post them here, but not quite got round to it yet.  This is the one that prompts me to start sharing them:

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

Isn’t it great?  I think it is probably easier in Thailand than Scotland though 😉

The day of the surgery – Monday 5 October 2009 – I won’t forget that day in a hurry!

Alert – lots of gory detail!

We arrived at the Hospital in plenty of time and were met by a porter cum bell boy in a green smart uniform, and with his micro microphone in his ear and his peak cap.  He put our luggage on his trolley and followed us to Counter no 5 – it was totally surreal.

We waited there for a few minutes, signed a few documents, including one waiving my right to retain two breasts, and then started on the path which would lead eventually towards the operating theatre.

A few painless and easy things first, weight, pulse, temperature and blood pressure (sky high). I was allowed to take my regular BP medication with half a drop of water.  Then the needles started as they took me to another room and put in the IV line.  Next was the ultrasound room where I had more drawings (7 o’clock and 12 o’clock apparently) for the biopsy.  Then I had an ECG to make sure I was physically up to major surgery.  I then saw another doctor who looked into the overall results and assessed (and authorised) my fitness for the operation.  She was concerned about the blood pressure but unsurprised given the anxiety and stress of the upcoming surgery and she gave me some magic potions and a patch to keep it down and reduce the anxiety.   The anxiety thing was wonderful – it made me sleepy and quite chilled and worked pretty quickly.  I could do with some of that for other occasions too!  I learned that the surgery would take 1 – 2 hours for biopsy and results and if more surgery required it would probably take a total of 3 hours or so.

Finally I was pronounced fit to cut and I returned to Counter No 5 and our luggage and bell boy.  We then headed to the ward and I was installed in my room.  I have never been in a hospital before which has a TV (and internet), phone, kettle, cups, microwave, mini bar (with sprite) and a room service menu in case you don’t like the food or get hungry between meal times!  So that was a good time to put the “nil by mouth” sign above my bed!

We then had to wait as the surgery was scheduled for 2 pm.  The time seemed to pass quite quickly, perhaps because of the magic anti anxiety mix and also because there was a succession of visitor including the smiley anaesthetist.  I shared some concerns I had from previous surgery and he said would make sure that I had a med to counteract this effect again.

Then at 1.30 pm the door opened, nurses and a porter came in and they announced they had come for me!  TERROR!  Not yet, please not yet………….  They transferred me onto a trolley bed to take me to theatre.  All extras (glasses, watch and nose stud) had been removed and I was wheeled along the corridor towards the lift with a really weird view of the world.  Unsurprisingly the chittering started again and I could feel tears welling as we got in the lift and down towards theatre.  J was allowed to come too, up until we got the entrance of the theatre complex.  Then I was wheeled into through the swing doors and the bright lights of the operating theatre.  I was transferred onto what felt like an ironing board, so narrow my arms kept flopping down unless I placed them across my stomach.  I lay there surrounded by the bright lights, shiny clattery instruments and that unmistakable medical smell, all the time staring at the ceiling I hate that part – and I hate being conscious for it.  The anaesthetist arrived and I told him I was scared – well he had such a kind face!  He said he would give me a pre med and he tipped it into the IV system which was now looking a bit like a spaghetti formation.   I have had pre meds before and had not found them to make much difference and they certainly didn’t make me sleepy.  But this one was lovely.  It made me a bit drowsy and I decided to close my eyes and shut out the bright lights and rattling instruments, just for a few minutes until they administered the general anaesthetic…………………………………..

The next thing I was aware of was some vivid dream, and then a voice from somewhere saying, “wake up, your operation is over now”.

Over? Oh thank goodness!  My throat was really hurting, but I opened my mouth and asked what time it was!  A strange question perhaps, but when I heard the answer (just after 7.30 pm) the underlying question was answered.  The surgery had lasted nearly 6 hours and had therefore been radical – so the spaceship had indeed been cancer and was now gone, probably with rather a lot of the surrounding area.  In other words, I knew at that point I had had a mastectomy.

I had my weird very short sighted, bird’s eye in reverse view of the world.  J was there – I think I was already in the recovery room, the surgeons were there and Dr W was speaking to family in the UK to explain everything.  Dr S, who had worked with Dr W and who would be looking after me while he was away, was beside me.  He introduced himself (a rather odd moment as he had been working on my surgery for the past 6 hours) and told me that the lump had been cancer, as was a second much smaller lump.  He also told me that they had removed 3 lymph nodes which also came back as positive for cancer cells and therefore they had taken more for further biopsy.  He told me he would be looking after me and that the surgery had indeed been a mastectomy.

Anaesthetic is great for numbing more than the pain and I dozed off and on, asking for ice in between to counteract the pain and dryness in my throat.  They kept me in the recovery room until around 9.30 pm, topping up various drugs for pain, nausea and antibiotics.  I seemed to be wired everywhere and was unable to move.  They did a neat little trick back in the ward, lifting me in the sheet and putting me gently on the bed, before rearranging all my wiring around me.

Along with the nurses checking vital signs, giving me water, replenishing the IV and topping up drugs, J was also on duty all night looking after me.  It had been a long and tough day for me, but it had been a much, much longer and tougher day for him.

Nightly Mind Games

Nightly Mind Games

In the dead of night, I lie awake,

again I cannot sleep,

crowded by those night time thoughts,

unbidden, dark and deep

 

They intrude my mind, they force my fears

of the coming hours and days

it’s all unknown and new and changed

no clear future, just a haze

 

The nightly battle gathers strength

the dark thoughts laugh and jeer

they invade my mind, distort my dreams

and fuel my fright and fear

 

Slowly and eventually

the night begins to fail

the blackest black turns inky grey

and the dark thoughts start to pale

 

I start to drift in easier mind

as daylight melts the dark away

the black thoughts lose the upper hand

dreams and lighter thoughts start to play

 

In light of day I know they’re there,

these deep and tugging fears

hiding, waiting, lurking

they refuse to disappear

 

But I know that in the warm sunshine

they lose their hold on me

and though they’re back in dead of night

for now, my mind is free

Rapunzel

I should start a book – as in, a book to record bets – on my hair.  One of the most common and well known side effects of chemotherapy is hair loss.  I know that it is very, very likely and will probably happen very, very soon.

Hair loss occurs because chemotherapy can sometimes damage healthy cells. It is so common because hair follicle cells multiply very quickly like cancer cells and chemotherapy drugs have difficulty in discerning the difference.  Just in case you wondered – because I did!

I know that it usually happens between 1 and 2 weeks after chemo.  Today is day 14 and I still have my hair. Some is coming out, but not in any significant amount (yet) but my scalp feels very tender.  Naturally, I am wondering if I will be one of the rare folks who do not lose their hair.  But of course I’m not satisfied with that either because I am worried that means the chemo is not working.

In a practical sense I am prepared, and have silk scarves and a couple of funky hats at the ready.  I know it is a different story emotionally and I am not quite sure how will I handle it.  I think that if or when it happens it will be a bit of a watershed.  At the moment I can go out and about, and although twang arm and bright scarves draped in a way that hides my weird shape probably make me look a bit strange, I know that having no hair will bring an unmistakeable association with cancer.  So I was really thankful for my friend H’s perspective when she told me that a woman without hair made her think of Ani (Buddhist Nuns) and invoked a sense of spirituality, calm and serenity.  That is something I will hold on to.

When I had my appointment with the oncologist last week, he also referred to the fact that I should be prepared to lose my hair.  Given that this applies to all hair (including eyelashes, eyebrows etc) I joked that it would be good not to have to wax my legs for a while.  So I was surprised when he said that I might not lose my leg hair.  Come on – this is neither just nor logical!  That’s something I don’t want to hold on to!

Letting it sink in – a weekend in limbo (3-4 October)

After the diagnosis…………….

I managed to sleep a bit that night, but fitfully and spent a fair bit of time lying awake, everything spinning round in my mind.  I dozed off finally and it was daylight when I woke with a start.  And just for an instant everything was fine.   Then with a crash, the previous evening and its enormity hit me.  It had not been a dream, it was real and it was damn scary.

I am not sure what happened to the Saturday.  I have no clear recollection of what we did or where we went.  Although I do remember breakfast when I really try and think back.  Not so much the food although I do remember the variety – western, Indian, Japanese.  Most of all I remember looking at everyone else, aware that it was another day for them, and feeling an acute sense of distance from them all.  Most were probably on holiday in Thailand, or on business.  I felt sure that I was the only one there who was not glad to be there.

The only other thing I can remember doing is checking email, and reading the report which the hospital had sent to the insurance and my doctor in Yangon.  I had sat with our liaison officer while she prepared it, but reading the cold facts on the screen, outlining the results of the analysis was far more chilling then a Stephen King novel (and I have to read them with one eye closed and hiding behind the sofa!!)

I also knew I had a really difficult task to do – I had put off telling anyone because I knew it would cause worry, and didn’t want to cause that unnecessarily.  I couldn’t put it off any longer.  Thanks to facebook I knew that there was a family wedding on the Saturday, and the last thing I wanted to do was to upstage the bride in such a melodramatic way!  I also hoped that I might catch folks together the day after so I hatched a cunning plot for giving the news on the Sunday.

Of Sunday I have a little more recollection.  This was due firstly due to a mix up which saw the hotel trying to chuck us out as the booking hadn’t been extended, me getting wobbly and the manager resolving it (even though it was not her glitch) and bringing me a luscious bunch of scented pink lilies.  Secondly, it was making the hardest calls I have ever had to make.  I had been through the scenarios so many times, and practised what I had to say but it was horribly tough.  We focused on the practicalities of communicating the results of the surgery, laying the onus on J’s shoulders as I knew I would not be chatting on the phone for a day or two afterwards.

At the end of the afternoon, we headed out for a walk from the hotel, and stumbled on Benjasiri Park which was a real delight.  The sun was sinking in the sky and in the park were individuals practising tai chi and yoga, people jogging around the perimeter track, formations of people doing a dance/aerobic session, all in their own styles, and many relaxing, walking, children playing and teenagers practising dance formations. It was incredibly peaceful to drift into the park atmosphere and we were sitting absorbing it all when J gave me a dig in the ribs.  “quick – stand up!”.  I had been oblivious to the start of the national anthem on loudspeakers, and everything and everyone was at a standstill and standing in respect – joggers had stopped, a couple who had been playing badminton, were standing opposite each other, racquets down,  tai chi poses transformed and children standing beside their parents.  We all stood together, and once the anthem was over, everything picked up and continued as it had before.  We even joined some of the dance aerobics before heading back on our jaunt round the park.  It was the perfect way to round off the day and weekend, as we knew a lot of change was in store the following morning.

I didn’t sleep a lot that night and was really thankful for the tip of having my ipod nearby and listening to music as a way of interrupting those independent and forceful scary thoughts.  I chose my music carefully and listened to Natalie Williams non stop for hours.  Thanks Natalie – you have no idea how much you saved my mind that night!

All too soon it was morning, a car was waiting for us, we checked out and headed to the hospital and Counter No 5.

Dealing with the diagnosis – options and decisions (more gory detail)

I am afraid that it is taking time to get all this written up due to incompatibility of twang arm and typing.  So slowly does it and I will keep moving forward with my account, which picks up from the post about the Diagnosis.

We were in Auspicious Room 59 and the reality of Dr W’s diagnosis sinking in.  I had seen the spaceship shape, I had heard his words.  We knew that the likelihood of this being anything other than breast cancer was extremely slim, if not zero.  So what happens next?

Biopsy is the first step to see what is really going on.  The biopsy needle was still looking at me wickedly, and I was expecting this to happen next.  However, the results would take 2 – 3 days to come back and Dr W would be away from Bangkok for a few days from Tuesday so that would limit time for the major surgery, if that was what biopsy suggested.  Another option was to take what is termed a frozen section biopsy under general anaesthetic.  These results come back in 30 – 40 minutes and would mean that whatever surgery was indicated could be carried out immediately.  A third option was to try chemotherapy and see if that reduced the spaceship and then look at surgery after that once it was controlled.

There didn’t seem to be much of a choice to me.  I knew that spaceship was likely to be trouble, and even if it wasn’t I would rather go ahead expecting the bigger surgery under the same anaesthetic.  We agreed that once the results came back from the frozen section, I wanted the surgeon to go ahead and do whatever was needed.  My overriding sense was to get rid of anything which was, let’s say it – cancerous, and do what is needed to give me the best chance of getting through this.

We then had discussions about the kind of surgery, and how radical it might be.  This was basically about how much I wanted the surgeon to try and keep the breast.  He set out all sorts of options, with drawings and diagrams.  He spoke of different options for reconstructive work which could also be done, using skin and tissue from other parts of the body.  Great – I could lose excess baggage from my hips as well as getting a boob job!!

To be honest, my priority was to do what was medically necessary to obliterate the spaceship and find out what other damage it was doing.  I was conscious of J’s hand resting on my shoulder as it had been since Dr W’s diagnosis.  There was no discussion – we were completely clear that saving the breast just was not important if the frozen section confirmed that the spaceship was indeed malignant.

We had one final decision to make that evening – when was this going to be done.  Dr W was prepared to operate the following day (NO NO NO – I am not ready!!) or the Monday (5 October) or Sunday if I really wanted it to be done then.  I needed time to let family know, to make sure that the insurance company updated and get their approval, and actually to get my head round it a bit.  So we agreed that Dr W would operate on Monday 5 October and that I would report back at counter 5 at 8 am on that day, having fasted from midnight.

Our liaison officer was waiting for me – she gave a huge hug and said she was so sorry and at that point I crumpled.  (Please don’t be nice to me – I am not sure I can handle that)!  She was the perfect combination of professionalism and caring and I have enormous respect for the role she played that evening, as well as throughout my experience at the hospital.  We completed some paperwork, confirmed the arrangements with the insurance, updated my Doctor in Yangon and she even showed me the room I would be admitted into.

Finally we left the hospital, and the car took us to the hotel where we checked in and let it all sink in.

It is really hard to describe what a diagnosis like this does to your whole outlook.  I do know that there was still a chance at this stage that the spaceship was not malignant, but we knew from the results and Dr W’s assessment that it was pretty sure that it was, and I knew that I had to start getting my head round it from now, rather than waiting until I woke up from surgery on Monday.

There are two things which shape the way I see this diagnosis.  Firstly is the fact that life is less about what happens to us, than how we deal with what happens to us.  I can’t change the diagnosis but I am in charge of how I handle what is coming.  So be prepared for inappropriate humour and oodles of feistiness.  The other thing is hard to describe.  Life changes with such a diagnosis, and you can’t go back to what it was before.  From the day I googled galore and realised that there was a real possibility that this was breast cancer, I realised also that there are many things I can no longer take for granted.  All plans change, in fact all plans are cancelled or put on hold.  It is a bit like the sun rising every morning – you know you can rely on it, you know it will come up and some days are sunnier than others and you can see it clearly, some days cloudier but it is light so you know it did it again.  But imagine if suddenly, one day it doesn’t rise.  Everything changes.  Everything fundamental you take for granted shifts.  No daylight, no warmth, no growth and the colours all change.  But, after the shock and with human resilience, will to survive, creativity and technology ways are developed of dealing with it and life continues.  But it can never be the same, it can never go back to the way it was before.  All right, that is an extreme and dramatic analogy, but there is something about this diagnosis that feels similar to me.

So I think it is time to remind myself that I have many reasons to be cheerful!  Such as:

  • I have a fantastic medical team looking after me
  • Treatment these days is excellent and there have been many advances
  • I have overwhelming support and love of family, friends and colleagues
  • I have access to treatment and care which very many women do not
  • THE SUN RISES EVERY DAY 🙂

Loy Krathong – and one month on….

Yesterday was full moon and the Thai Festival of Loy Krathong.  It also marked exactly one month since we had arrived in Bangkok and I had been diagnosed.  bangkok 1 032

We headed to Lumpini Park for our evening walk and also because I wanted to float a krathong and make a wish and a prayer, and to watch the krathongs on the lake.

bangkok 1 062

I’m not telling you what my prayer and wish were, but it is not hard to guess!