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

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