Anticipation and reflection

“Harmony, Vitality and Adventure”

When I chose these as my guiding words for the year, I didn’t realise how often I would refer to them.  And here I go again!

My visit to the UK was over in a flash, and although I managed to get around the country and see my family, there was little time for reflection or relaxation.  I know that is the deal though, I have been overseas long enough to know that home leave is home leave and not a holiday. The special time with family and friends is accompanied by a crazy logistics-fest to get around the country and spend time with people.  I also find that the backlog of various tasks such as bank stuff, correspondence, immunisations, hair colouring (note how I just slipped that in there – oh yes, that is a subject for its own post), phone conversations and stocking up on various essentials and goodies which I can’t get my hands on is always takes far more time consuming than I realise.  Every year!

This time my visit was shorter, and I was sad that I was not able to connect with many special people.  However, this year was different to the general home leave schedule.  Two years ago I did not manage to get back on home leave, for a number of reasons.  The biggest one being the unplanned encounter with Breast Cancer.  Nuff said!  Last year, my visit was at the end of the treatment  and for the first time I did not even attempt to get around the country as much as I usually do and spent a good bit of time on a remote Scottish island.  Looking back, I realise how frail I was and how “cancery” I probably looked.  Being bald helped that image.

So this year has been very different.  Having my checks just before the visit gave me a wonderful peace of mind before travelling.  I also felt confident about travelling on my own.  In fact the main challenges I have found have been relatively minor.  There is the continual “faulty thermostat” issue – being too hot, then too cold, then too hot again (repeat ad infinitum….) and the yucky crumbly nails.  The faulty thermostat is no different in cooler climes I have discovered.  I just have more layers to remove and replace and often in more crowded spaces! I think the nails have probably been affected by the travelling – carrying bags, and putting my hands into handbags for passport, purse etc has resulted in 8 of my nails being quite badly damaged.  That is 8 of my fingernails, and not including toenails, so quite a high proportion!  One thumbnail has been particularly damaged and tore off eventually far enough down to cause bleeding.  Not nice.  I am not sure whether this is still the after effects of chemo, effects from Tamoxifen or both.  In any case, when you add the travelling factor, it has resulted in quite a combo.

So I flew back to Bangkok on Friday/Saturday and when I woke up this morning I had absolutely no idea where I was, what day of the week it was and what time of night or day it might be.  Slowly it came to me that I am in Siem Reap, Cambodia, for the first time in my life.  Despite living in the region for many years, and having had a fascination to come here, I have never quite got here.  Till now.

I am in that beautiful phase of “anticipation” now with a new place to explore and discover.  Planning for and anticipating the coming days for jungles and rainforest temples.  Enjoying the harmony of these surroundings and the break.  Feeling so much healthier and with a sense of real vitality.  And embarking on another adventure!

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British Summer Time

I have arrived safely in the UK and find that jet lag, i phones and cold rain abound!

I can’t believe the difference from this time last year when I arrived following the triathlon of treatment.  From my gymnastics display in Dubai airport through to being unable to lift my luggage off the conveyor belt I knew that I would struggle with independent travel last year.  Sure enough, hubby J ferried and portered for me throughout the visit and I leaned very heavily on his support.

This year is unrecognisably different.  Although I am struggling with jet lag (I had forgotten it gets light at 4 am here in the summer) and rather tired, I have already been gadding around the country and London.  I even carted my luggage on the underground all the way to Kings Cross Station on my own!  Thank heavens they have installed lifts, albeit a very complicated system which should surely entitle anyone successfully surfacing where they intended to an Amazing Race like prize.  While I am tired, I feel strong and have re-found my confidence after it was stripped from me last year.

So now I am on the train to Scotland, grumping about the fact that there is no tea, or any hot drink on the catering trolley, and that a charge has been introduced for the onboard wi-fi.  Still this was balanced by a surprise check in facility for luggage.  “Yes, please – do take my suitcase and save me the trouble of humphing it onto the train, struggling to find it a little home and then worrying about it throughout the journey:.  Most convenient.

When I alight I will surely find out that I should have put socks on.  I have on ongoing issue with socks and always forget to wear them and often forget even to pack them.  Socks are not something which I have much use for in Yangon.  Well, in the days since I got a proper prosthesis 😉

In a couple of days I will head to a remote and restful Island off the west coast of Scotland for some special time with my father.  My overall break in the UK is shorter this year so I am whirlwinding around the country to try and see my family.

It is probably a good thing that the daylight hours start so early and last late into the night so that I can cram as much as possible into the time.

A Confession

It is the day after the checks.

I have been a bit silent in the run up to these checks, and there is a reason for that.  I have a confession to make.

I have been doing my usual waltz with the Captain (Paranoia) and had fleeting concerns about the usual aches, twinges lumpy bits and itchy spots.  But 2 weeks ago I woke in the night with a very strange pain near my scar area.  It felt like some kind of severe sting, and rather reminiscent of shingles-like pain.  Yes, it really was painful – enough to wake me up.  I hunted around to see what was causing this, and found a slightly raised area, which was extremely tender and painful.  It felt a bit like a very nasty sting, but there were no other marks or indication that it might be a bite or sting.  Just one isolated little spot of bother.

Of course, that made me worry but not unduly.  After all, living in a tropical climate, there were likely to be all manner of weird little beasties which could cause a bite.  But it lasted for a few days, and I could feel a tiny lumpy area.  Given its proximity to my mastectomy site and scar, and the fact that it persistently stung, the worry grew and I found myself consulting Dr Google about skin mets.  Dr Google kindly provided me with a variety of images, most of which did not resemble my little “wirple” but a couple did look frighteningly similar.  So then I started searching the Breast Cancer sites for more information.  There is not a great deal of  information about skin mets, but there is a little.  And the thing that freaked me out, was that there was a consistent description of one type of met as feeling like “a grain of rice”.  And guess what?  My little wirple felt just like a small grain of rice.  Uncooked of course!

I obsessively checked the wirple and willed it to go away.  Although it did start to ease a bit in a few days, it was still very painful so I dragged it off to see Dr H.  I knew my checks were imminent, but needed to have it looked at by a real Dr and not Dr Google.

Dr H had a good old look at it.  When I mention that she had a magnifying viewer on her forehead and a searchlight that could illuminate a large village, you will get a sense of the scale of this wirple.  She had a very thorough look and examination, and found nothing conclusive.  While it didn’t scream skin mets, nor could she totally discount it being something worrying.  She of course stressed that as a General Practitioner she would not be equipped with a great deal of oncology experience.  She then brought out a reference book on skin conditions and we went through this together, looking at the various example of skin mets from breast cancer.  Most of the images did not correspond to my wirple, but as Dr H said, she was not able to discount it.  She was glad that my checks were within 10 days and the Drs W and W2 could run their weathered eyes over the wirple.

So I left the surgery, feeling mildly better (because it was not a clear “OH MY GOODNESS THIS IS VERY WORRYING” finding) but still anxious.  And anticipating a biopsy in all likelihood to check it out further.

I settled into the routine of willing the days to pass so that I could get it looked at by the specialists, and willing the days not to pass in case it was nasty.  Sleep was highly evasive and I spent many hours trying to seek out puzzles and distractions, but without great success.  It was horribly reminiscent of the time between discovering the original cancer, and being diagnosed.

The thing that was most revealing though, was my reaction in terms of sharing this.  Similarly to the situation when I first discovered the limp, I found that I did not want to worry close ones.  It is bad enough lying awake worrying about your own stuff, without imposing it on others.  So I kept quiet about it with the exception of a few people back in Yangon.  And the rationale for sharing it with these people was based on the fact that I had hardly mentioned the original lump  to others, and the result was bad.  So if I did mention it – then perhaps the result would be ok.  I was meant to be planning home leave, but found it impossible to book anything other than my return ticket to the UK, just in case I was tempting fate.

Not mentioning it to family did mean that I was not able to blog about my worries.  And that was quite a revelation to me.  I have been used to the blog’s function as an outlet, and as a way of processing what goes on in my head.  It was very hard to keep quiet about this.  The fact the the laptop decided to choose that very time to crumble probably helped as it meant that blogging time was even more limited.  It made me realise that there is a hierarchy of priorities in communicating my worries.

So that is my confession.  I have been keeping a secret about the level of worry and fear caused by this wretched wirple.  Until Today that is.  And the reason I can finally talk about it is because I am in Bangkok and had my checks yesterday.

As always it was a long day, helped enormously by the fact that my friend and I had planned and schemed to have our checks together and support each other (read cancer rebels!)  We stayed in a suitably swanky place with spectacular city view.  Well, from the 41st floor you would expect good views, along with the vertigo.  And the inability to go out on the balcony that high up!

We headed to the hospital together and re-grouped between the various tests and appointments.  After the usual bloods etc, I saw Dr W2 in the late morning.  Sitting in the waiting area, was even more painful than usual knowing that he would look at the wirple, tell me how my blood work was and generally tell me how my future was looking.  The first thing he said was that I was looking well.  I told him about the wirple and he examined it.  His verdict was a wonderful “Pah – that is nothing”!  I said that I had been terribly worried, and he said it is absolutely nothing sinister.  He noted that my tumour markers were down a bit further (now well within the normal range) and all other blood work good.  He examined me carefully and found nothing at all untoward.  I sat back down at his desk as he shared his verdict.  “No relapse”.  No Relapse is NED in disguise.  and JUST what I had wanted to hear, fearing I would not.

So by lunchtime I knew that the wirple was a nuisance and not a major problem.  I headed up to the oncology ward to get my port flushed, and after a little obstinacy even the port cooperated and produced a blood return!  I asked the nurse not to put the usual plaster over the puncture mark to avoid aanother nasty reaction and she of course obliged.  The oncology nurses are indeed angels.

There was just enough time to scoot across to do some urgent retail therapy.  I should perhaps add that the day before the tests I had pre-empted my checks by indulging in a replacement laptop.  (Which is STUNNINGLY beautiful!  Really, it is.)  So I had to get a couple of “essentials” to make sure it was feeling valued.  Then I hurtled back on the sky train in time for my appointment with Dr W, the Surgeon.  He looks at things differently to the way that Dr W2 does.  Understandably, one looks through the oncology lens and one through the surgical lens.  Dr W2 floored me briefly when I told him I was planning to travel to the UK, by asking if I would be returning for my treatment.  My stomach went into free fall, when he clarified.  He thought I was returning to the UK permanently and meant care rather than treatment.  It’s amazing how the subtle change of a word can take on a completely different nuance.

He examined me carefully too, working at Twang Arm and again saying that my arm movement was still very restricted and the cording quite bad.  I think that he is keen to have a go at Twang Arm with his surgical instruments at some point but that it does not warrant its own surgery.  Again I dressed, and sat down at his desk.  He used slight different vocabulary as he wrote his findings “No recurrence” beside some interesting depictions of my scar and arrows pointing to various bits of Twang Arm and its obstinacy.

He asked when I had had my last mammo and I said that it would be a year come October, so I was expecting the Big Check to be next.  He agreed and ordered the necessary scans.  This time I will have an extra ultrasound of my liver for a treat.  He is not sure about another CT scan considering that I had an additional one at the 6 month point, so we’ll see what Dr W2 judges to be needed.

But that is for another day, for the time being I was released into the heavy, humid air and torrential rain to re-group with my friend who had been going through her processes.  It was late in the day when we collapsed, exhausted and emotional, ready to bubble.

Bubbling had been the pre-agreed strategy.  If the checks were not good – it would be appropriate to have some bubbles.  If they were good, then bubbles would be in order.  However, there was another clear bubbling activity.  We talked about how draining the whole process is.  And the fact that while it is an enormous relief to hear that the checks have this time been kind, there is not a sense of euphoria.  There is just a massive exhaustion and overwhelming desire to weep. We had had grand plans to eat somewhere decadent but that plan rapidly evaporated particularly given the exhausting day that my friend had had.

She of course had known about my wirple.  We have this instant communication when something crops up that only a cancer exposed mind can understand.  We both had different stresses and anxieties, but it was enormously helpful to go through the checks in sync.  This is something that we were able to do here, and I know that it is not possible in most places.  However, as I have mentioned before, our medical treatment is first class on the world stage of cancer treatment, but the softer side is not really in place.  So this support has been absolutely critical.

The day looked different in more ways than one than it had by nightfall, in every sense.

When I was in the lift this morning, the doors opened and a mother and young boy got in.  The little boy had a small backpack, with a bottle of water and probably  many other essentials for his forthcoming day in Bangkok.  I was suddenly taken back to the morning after my diagnosis.  I remembered looking at the people there and feeling a terrible sense of sadness.  I knew that these people were probably either on holiday, or business.  They were probably looking forward to the day ahead.  They had no idea that I had just been delivered the most life-changing message a few hours earlier and that I was in a completely different place to where they were.  I remember the isolation and feeling of fear, uncertainty and dread over what might be ahead.   But this morning, I felt a sense of kinship.  I too was looking forward to the day ahead and I could identify with the little boy’s excitement portrayed in his features.  I found that I was again in a different place to the one I was in after diagnosis, even though I could physically see the same building where I had been.

This means that tomorrow I am travelling to the UK, and so looking forward to seeing close ones.  I will try and avoid departure lounge gymnastics and do not dread going through immigration as I did last year when bald.

I am sorry that I kept you in the dark about the wirple, but I am very happy to be giving the confession and update that I am.

Nostalgia for the time when a BMX was a child’s bike

A few days ago I was puzzling over a reference to a BMX , and just could not make sense of it. This BMX was in fact a child’s bike, and not the Bilateral Mastectomy which was my first thought. That is when I realised how much my mind has been skewed by this whole breast cancer ride. I know it has been distorted in many ways, but it was fascinating to realise how many elements of our conscious and sub conscious it affects.

I remember when BS used to be the polite way of saying Bulls**t . Now the first think I think of when I hear or see BS is my wonderful Breast Surgeon! Earlier if I saw a reference to US, I would think of the United States, but in the post diagnosis life it is Ultrasound. And of course a PET is another type of scan with no resemblance to fluffy kittens.

And what about the glorious rich new vocabulary I have gained? I have become familiar with the normal reference ranges for various blood work as well as all sorts of procedures, danger signs and conditions related to cancer. I am familiar with talk of lesions and nodules. I even see an endocrinologist every 3 months now. A what? So what on earth does he do for a living? I had never heard of an oopherectomy before but now would consider asking my oncologist (sweetly shortened to onc) if he thinks that would be a sensible prophylactic measure. Oh, there are a heap more new words in my active vocabulary, a whole new language on the tip of my tongue!

Of course, none of this new knowledge features on my CV. (CV? Is that one of the tumour marker blood tests?) I think that is because those of us who wear the cancer equivalent of beer goggles know that although we have different associations, that this does not apply to those not wearing the breast cancer glasses. And that is another element which serves to isolate us just that little bit more from our previous, or other life. However, that is also exactly what bring the familiarity and support in those spaces such as our online friendships and blog communities as well as the waiting rooms we spend too much of our lives in.

We quite literally speak the same language! It must be maligno-lingua!

Yourealiseyouhaveaproblemwhen…………….

………..you find yourself unable to use the technology upon which you have become dependent!

Last weekend my laptop developed a fault and I found myself in a very strange place.  Unable to write anything which required a space in between letters, I could not email, blog, chat or even comment coherently on a facebook status!  It was unbelievably constraining.

It did not take long for me to realise that I did not just take these things for granted, but seemed to be rather dependent on them!

Happily I had plenty of other things to take care of, so I was not exactly twiddling my thumbs.  I am not sure I even know how to twiddle thumbs.  But I found that was fine as long as I was not doing anything which required the laptop.  I discovered that with a faulty space bar there is actually not really anything you can do with a laptop!  And as for any life online?  Well, just forget it.  Even when Twang Arm was at its peak and I struggled to use the laptop, I was not as paralysed as I was by the wicked space bar.

I have mixed feelings about being confronted with my dependency.  Partly I am shocked that such a seemingly tiny fault could cause such a feeling of isolation and disengagement and highlight my dependence on technology and connectivity.   Partly, though, I was making plans to get a replacement laptop as soon as possible!

It is a keen reminder that our lives have changed beyond recognition with the advent of computers, gadgets and super-sophisticated technology.  While I cherish the richness this has brought and the special people I have connected with or re-connected with, I do just wonder if our laptops and gadgets are in charge or we are?