Disorientation

And so the sun sets on another week, and I find myself in a different continent.

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Under an African sky – in front of my eyes

I returned to Africa a week ago after an unexpected, and unwelcome reason for extension to my stay in Scotland. I should have returned two weeks earlier, after a short visit but things always take a surprise turn in that post diagnosis cancer world. I am fine, no nasty cancer surprises but I can attribute what happened directly to cancer.

So what happened, that warranted hospital admission and being unable to return for two whole weeks? A nosebleed, that’s what. Yes, a nosebleed. And one I blame unequivocally on cancer!

It started fairly innocently just before I had an optician’s appointment. One of a series of things to be done, while on home leave. The bleed would not stop, and reluctantly I had to cancel the optician. I pinched my nose, and waited patiently as the time for another appointment approached. The bleeding continued and worsened. I called the medical practice and was advised that I should go the Accident and Emergency Unit at the local hospital where they would be able to deal with the bleeding. The last thing I wanted to do, but with my history and being on blood thinners this was the correct and only course of action.

Treatment was not pleasant or nice, and for something as trivial-sounding as a nosebleed it was frightening to see how quickly a situation can become worrying. I was admitted to hospital and with the various procedures the bleeding was eventually staunched. I was allowed home the following day, with a strict set of instructions. No hot showers, no exertion, no flying or travel and the worst? NO TEA! That was a serious struggle. I have never craved tea so much in my life! But heat or exertion can re-start the bleeding and that is not a risk to be taken, so no tea and no immediate return to Africa.

How can I blame cancer? Quite easily in fact, the nose bone is quite clearly connected to the cancer bone in my case. Blood thinners were the cause of the nosebleed, and those blood thinners are a consequence of the Pulmonary Embolism I had, which was attributed to Tamoxifen. PE is a relatively rare but dangerous side effect of Tamoxifen. And of course,Tamoxifen is prescribed following hormone receptive cancer diagnosis. Thanks, cancer!

The sides and afters of cancer and its treatments continue to rumble on and we are reminded that even at times of NED (No Evidence of Disease) we exist with vulnerability and fragility.

I am enormously thankful that this medical hiccup has been dealt with relatively easily, but my confidence has again been damaged. I am approaching 7 years from diagnosis and am in pretty good health overall. Yet the fallout from cancer, while it might not be visible or evident apart from to me, is not to be underestimated. Life is fragile, precious and unpredictable. At the hospital, the ENT specialist advised me to be cautious and not to trust my body as it has let me down before. Interesting words from a doctor, validating anxieties and vigilance.

So I am pleased to have returned to my new life in Africa, though being in three continents in as many months has proved disorienting briefly. It is good to be able to look ahead with no immediate plans of long distance travel and to concentrate on my reorientation. My three word mantra for the year powerfully reminding me of my focus for the year. The time is right to seek to crystalize and settle now and I have a very clear reminder of my middle word – nurture – timely and so pertinent.

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I returned home yesterday late afternoon as the sun was sinking in the sky and I was treated to a spectacular sunset. And I was present in every sense to witness and appreciate it. With no thanks to cancer!

 

After Words

I was astonished by the level of interest and response to my “thanks, but no thanks” rant last week.  I was in part reassured to know that I am not alone in the physical and emotional space and that these “afters” and “sides” of cancer and its treatment are very real and encroaching.  However, at the same time I was saddened and frustrated that so many of us are struggling.  Often silently, because we do not want to appear ungrateful or to upset family, friends and those around us.

From the outset in this cancer experience I have always reminded myself that there are many things which are not in my control, but many which are.  And how I live the cancer deal is one of those in my control.  I would rather be flippant and feisty, and poke fun at cancer than dwell in the doldrums and feel unhappy with my lot.  It just is what it is and I get on with it.  Mostly.

What came across clearly in the comments and conversations prompted by the rant, was the fact that amidst this weariness, we feel compelled to maintain a positive outlook and we feel guilty when we sometimes want to scream and stamp our feet.  Well perhaps not stamp the feet as they hurt too much!  There was a widely shared sense that we do not allow ourselves to have off days, and times of frustration or anguish.

I have been adjusting to these side effects of these meds for some time, and last week reached the point where I lifted my head out of the sand and realised that the pain and discomfort are such that there are many things which physically I can no longer do.  I have had to acknowledge with some resistance, that the break I have booked for next month will be far more physically challenging than I have prepared myself for and that is beyond frustrating.  This is not about inconvenience, this is about debilitating physical effects which are stopping me doing what I have long taken for granted.   For example, one of the favourite parts of my work, visits to our project sites are increasingly difficult – I used to hop on and off of boats, sit on the floor in villages and walk for days in the Himalayas.  Much of that is now too painful, unsafe or, sadly, beyond my capacity now.

That is when I reached that tipping point and this rant took shape.  I feel better for venting, but nothing of course changes the physical deal, the side effects are still there, and I still have difficulty walking. But it is what it is.  I deal with it. I get on with it and adjust as far as possible.  Mostly with a smile, but sometimes, it just gets too much and I weep.  Not often, but sometimes.

These past weeks have been tough ones, and the prospect of more of the same in terms of side effects feels heavy.  But I do work hard to balance this and make the most of what I DO have, and carpe that diem.

Most days I am incredulous that I have been able to realise my dream and ambition to live and work overseas, in such extraordinary places.  I have now been in Asia for 13 years, and am humbled and moved by the incredible experiences I have been through and the wealth of inspiring and amazing people I have known.  I love my life, and I have no significant regrets.  There are of course a heap of things I still would love to do, sitting in my wish bucket.  But, I have so much to be thankful for and if someone called “time” tomorrow, I would not plead for the chance to do that something I have not managed to get round to.

Even as I sit here, looking out onto the lush garden, the wind whispering in the mango tree, frogs croaking as more rains approach, I still have that sense of naïve wonder and fresh enthusiasm at being in such a place.

However, some days it just takes that extra energy and determination to get on with the day to day, and I find that the reserves have run low and it is just out of reach.

It is what it is.

Sometimes even geckoes have to rant.

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