Report re port

I realise that I have somewhat neglected to update on my de-portation, after complaining at length about the way my poor skin responded to the adhesive dressings!

Well, one reason it has not featured in my thoughts and words is because, quite simply, there has been nothing to report re the port.  Or rather re the void where the port was.  The surrounding skin calmed fairly quickly once dressings and adhesive were out of the picture, and healing has been incredibly quick.  I have been able to swim from day 7 and although the site is still a bit tender and raised, it is really looking very healthy.  In fact one friend thought it was my old scar, it is looking so good!  Well done Dr P!    It is wonderful being able to move my neck freely and I feel a greater freedom in my right arm.

And what about the port itself?  It might not be surprising to hear that I carry it around in my handbag, waiting for an opportunity to show anyone who shows the slightest interest.  And to anyone who is not interested.  And anyone in fact. It has appeared in the street, in the office (several times), in the supermarket and at a friend’s house and in a couple of cafes.  It even appeared on the flight back from Bangkok!   I don’t think the fascination will ever fade, it really is an amazing thing.  And it is MUCH better on the outside!

So that means I can focus on the riot of colour which is Yangon at the moment.  Jacaranda is blossoming, bright red flamboyant trees are budding and bursting into colour and frangipani and bougainvillea abound.


 

Advertisements

Westering home

So, after 24 days living out of my suitcase, changing plans and generally following a nomadic lifestyle, I spent Monday attempting to cram all of my belongings into my bags in an attempt to shrink them into the allowable weight allowance for my return to Yangon.  This involved a few naughty tricks, such as planting some of my heavier documents and materials in beside laundry in the expectation that this would make them lighter, if not totally weight free.  The heavier papers I squeezed into a large carry on bag, and still I had a number of books which refused to fit in any of these bags.  My task had been complicated by the fact that I had some weighty things for family in India, and of course having had to cancel that visit, I would be taking them to Yangon instead of Darjeeling.  I try to travel fairly light, but with the different purposes of the various parts of my 24 day shufty I inevitably had quite a collection of goods.  I had so much that the usual compulsory Bangkok shopping items such as Thai curry paste, various cheeses, Boots shampoos and shower gels and other essentials had to be sacrificed (as in not bought, rather than offered up to some airport gods).  Somehow that did not appear to have applied to a few books, which I had managed to accidentally buy.  Interesting these laws of nature!

My flight was early so I had a taxi ordered for 5.45 am.  I was generally faffing around the room at 5.10 am, juggling with the various permutations of where to stash away the various bits and pieces which still had to be stashed when the phone rang.    My taxi was waiting for me!  Now I am happy to be on the early side, but this was not helpful!  Still, with the last final touches to the art composition that was my luggage, including an impromptu piece which was formed by stuffing a number of books into a carrier bag, I closed the door and left what had unexpectedly been my home for the past days.

I approached the check in counter rather apprehensively with all my bags, and handed over ticket and passport along with a big smile. I waved my bulging carry on bag at the ground staff and asked if it was ok for carry on.  (Quite what I would have done if she has said no, I am not quite sure – though part of my keenness in being early is to be able to regroup in the event of something like that happening).  She gave it a cursory nod and asked if it had any liquids in it.  Being completely dry it was apparently fine for carry on.  Along with the carrier bag of books and my handbag.  And the fleece and pashmina that I was carrying.  You get the picture!  It was not much fun going through security, taking out my laptop and placing all of these into the trays.  The staff were quite bemused to see me fill four trays!  Still, I was though and able to head to the airline lounge.

Bangkok Airways has a policy (I am not sure if it is new or not, but it is certainly most welcome) of providing lounge access to all passengers not just those with posh tickets.  So I was very happy to head to the lounge and its free internet and free flow tea.

I was especially happy because the timing of my fight, and the access to internet meant that I could join the #BCSM (Breast Cancer Social Media) Twitter discussion for half an hour before I had to go to the departure gate.  I particularly wanted to join this discussion too…………..

And that leads me towards a very different topic, one which will be the subject of its own post very soon and one which is very much on my mind as I am back home.  This week’s discussion focused on renewal and featured my friend Terri of A Fresh Chapter.  Terri spoke about her “Adventure of Hope” which she has embarked upon, following a period volunteering in Africa after her cancer treatment finished. Please read the transcript – it is very powerful.  In the discussion, she highlighted how cancer is seen in developing countries, and this is something very close to my own heart, having been diagnosed in Asia.  In fact, I have had a number of preliminary conversations about my own possible venture into “doing something” in this part of the world.  And to give you a flavour of why I feel so strongly, I am going to share a Tweet from Terri, which hit me with a force that was almost physical.  She tweeted:

“We can’t imagine the stigma around cancer in the developing world. Women would rather get HIV than cancer in Africa.”

This does not underplay the enormity and fear of HIV (which is immense) but rather shows just the level of fear, taboo and stigma around cancer and the challenges in accessing good standards of information, treatment and care.

And this is why I will be thinking and talking a whole lot more about this in coming days and weeks now that I am back home.

Starfish, scars and soakings

We are splat bang in the midst of Water Festival Mania in this part of the world.  In Thailand Songkran is celebrated, with massive waterguns, tubs of water and young children with little bowls of water – all aiming to soak you!

In Myanmar, the Thingyan celebrations last at least four days and ensure a total drenching, with the aim of cleansing the sins of the previous year.

It is all great fun, but it does get a bit wearing after a few hours of not being able to venture outdoors without being absolutely drenched through and through.  So I toyed with the idea of heading out of Bangkok, to a jungle retreat perhaps, or to the beach?  The beach certainly appealed as did the allure of starfish hunting in the ocean.  However, I found it rather difficult to make a solid plan.  Getting out of Bangkok is not difficult, but does require at least knowing where you are intending to head.  I did not particularly feel like taking a flight somewhere, and howfing my bags on and off of buses with a fairly fresh surgical would did not appeal much either.  A train journey would do the trick, though again I would to be clear about where I was heading and have accommodation sorted.  I also had an appointment with Dr P a week after the surgery so would need to be in town until then.  And although the wound was healing well, let’s face it, it is still a laceration and was very tender.  I was not convinced that it would be entirely wise to dunk it in the ocean and pursue random starfish!

I saw Dr P on Wednesday, and he was very pleased with the healing.  But the surrounding skin was pretty inflamed and angry.  Happily he felt that the dressing was no longer needed and after a brief consultation I was sent off into the great outdoors to get on with healing.

With a few days before my return to Yangon, I made a few enquiries, and looked at a few options but many places were fully booked as folks head out of town for the holiday.  And then one friend advised me that travelling out of Bangkok would probably be pretty stressful.  Transportation is pretty booked out and the main destinations would be very busy.  So I decided to settle on staying in Bangkok and lying low for Songkran, and take up residence beside the lovely little pool at our apartment.

As it turned out, that was clearly the best decision because I returned back to the apartment to a number of messages and the news of two massive earthquakes off Aceh and a tsunami alert.  It was good to be in contact immediately with family after our 2004 experience.  And I have no words for the relief and gratitude that a major tsunami was not triggered.

So no starfish hunting this time, although I did visit Ocean World which does have a starfish department.  That will “tide” me over for a while

A sensitive soul

I am not sure how many times I have heard the saying that cancer just keeps on giving.  Oh it is so true.  Little and not so little unexpected bonuses.  Like the disappearing thyroid function, unpredictable digestive patterns, permanently impaired fingernails, Twang Arm and a lingering tingling of neuropathy to mention a few.  And one of the most irritating quite literally – sensitive skin.  The combo of surgery, chemo and radiation have made the skin on my upper torso particularly sensitive .  With that and my port, I have been unable to wear necklaces because they rankle my skin so.  And after port flushing, I cannot tolerate a sticking plaster as before very long I can feel a rumbling as the skin starts to erupt as if I was hosting some kind of alien, waiting to break free through my skin.

This latter is causing me some grief following my de-portation.  My wound seems to be healing well and I only needed pain relief for the first day and a half after surgery.  I am carrying my port around in my handbag, taking it out every so often for another look, such is the intrigue it still holds for me.  After all I had kept it close to my chest for so long.  Embedded in my chest to be accurate and you can’t get much closer than that.  So that side of things appear to be fine.  However, the thing I have been struggling with is the seemingly innocuous  adhesive dressing.  Within a few hours of the surgery, I could feel my skin start grumbling and complaining.  Before much longer it was becoming  really crotchety.

I knew that there was a fresh wound under the dressing though, and that trying to remove the adhesive strip was not a sensible idea.  A ridge of irritated skin started to form around the edges of the dressing and over the following couple of days I started gradually to peel away the offending plastic.  The grumbling got louder though and was showing signs of developing into a full scale rant so around day 3 I reluctantly headed to the pharmacy to see what goodies I could acquire which would help this situation.  And I do have to confess, I had an increasing curiosity to see the colour scheme which was developing around the surgical site, as well as how the incision looked.  I picked up a selection of interesting items, including  sterile dressings pads, anti-septic/surgical spirit and surgical tape with a mix of trepidation and anticipation.  And irritation.

Back in the studio, I peeled the rest of the dressing,  let the bruises out and the skin breathe.  I carefully prepped the area making sure it was sterile and meticulously clean and covered the wound (which was looking very healthy and healing well) with a new dressing.

Unfortunately, this surgical tape did not last long before it too started to make my skin crawl.  Before long I was back in the pharmacy, scouring the shelves for the gentlest tape possible.  I managed to find a hyper/hyperallergenic-oh-so-gentle tape and carefully re-dressed the site again.

My supersensitive skin, though, is continuing to flare and protest and I guess there is not a great deal more I can do about it.  Tomorrow I will see Dr P, the surgeon, again and I very much hope he has a magic solution!  At the very least, I hope I am able to leave the wound uncovered and let my poor sensitive skin calm down so that will let me concentrate on puzzling over the port itself.

Fast track to de-portation

Yesterday marked two years ago to the day that I had my 8th and I very much hope, my last chemo.  I remember the day clearly.  I had been anticipating it for so long expecting a sense of elation and celebration when the 8th cycle was done. Instead I remember being overwhelmed and crumbling in a soggy heap when the needle came out.  So it was by a strange coincidence that I was again in the oncology suite on 4 April, and again being prepped for needle insertion.  But this was very different.  There was no chemo ordered, and I was in the midst of 2 days of appointments for my regular check ups.  In a gap between appointments, I slathered my Emla cream on the port area and headed to Floor 5 to have my port flushed.  It was before my appointment with Dr W2, but I was not expecting any huge surprises as I had already seen the results of the bloodwork and seen Dr W (my breast surgeon), my radiotherapy consultant and endocrinologist.  They had written the magic “no recurrence” words (on my file and Dr W felt there was nothing worrying in the pain I had had in December.  However, I know Dr W2 looks at things through his oncology eyes, and I was still nervous about my appointment with him.

The port flushing went smoothly and happily there was a good blood return.  Before long I was “flushed” and heading out of the suite towards my appointment with Dr W2.  I had to wait a bit as he was held up in arriving at the hospital.  As always, I heard him before I saw him, and to my surprise I was ushered in a few minutes after he arrived.

He asked the usual questions and I had my list of questions for him too.  He always expresses interest in what is going on back home in Yangon and with the recent events I was fully expecting his questions on this too.  He did the usual examination and to my surprise announced that perhaps the port should come out!  What?  I have been wishing the port out for 2 years and willing him to say that he felt I would never need it again (yes, yes completely wishful thinking).  My response was to ask if it was no longer needed.  I was completely unprepared for his reply.  “I don’t like the look of your veins on this arm”.  He said.  They are much more pronounced than usual.  I don’t like it”.

My bubble was instantly burst and my worry head swung straight into action.  He was concerned there could be a clot forming and even though the port was working fine, it should come out if there was a risk of clotting.  I asked him what that would entail, knowing that surgery or some sort was inevitable, yet illogically wishing for magical port disappearance.  He told me that the surgeon who had inserted the port would be the one to remove it and he phoned him.  Then and there, right in front of me!  I asked the two key questions I had had and he replied quickly to these, meaning no change in meds or ongoing treatment.  He then set me up with an appointment for Dr P, the (appropriately initialled) port surgeon.  And then I was back in the waiting room somewhat shell-shocked, explaining the unexpected turn of events to my friend.  And still waiting for his questions about Yangon!

Dr P was operating all afternoon and his schedule was full but he could fit me in the following morning!  I was ushered through the paperwork side of things and asked to return at 9.15 in the morning.  I had a growing list of questions which were difficult for the nursing staff to answer.  I called on the help of our liaison manager and she talked through all of my questions with Dr P.  Along with the questions such as “when would the surgery take place?, “would it be safe/wise to travel a day after the surgery.  To India?”, “would the stitches be dissolvable or need to be removed?”, there was a question sneakily hidden in the midst of the other ones – “can I keep the port once it is removed?”  I seriously wanted to see this device, which I had hosted for 2.5 years and never actually seen except as a shadowy form on an x-ray.  I most definitely wanted to keep it!

My questions answered, I headed off finally, knowing I was to fast again (the second time in 3 days), to return for a consultation with Dr P at 9.15 with the likelihood of surgery under local anaesthetic at 11 am.  Now I am the biggest wimp on the planet when it comes to surgery and I begged for a “happy pill” to get me through this.  This was obliging agreed to and I was prescribed ONE Xanax tablet to take that night before sleeping!

I spent the evening updating family and slept fairly early in preparation for the scary stuff in the morning.  Thanks I am sure, to the Xanax I slept fairly well and rose early with increasing anxiety.  I packed most of my belongings away and took out a few essentials to take in with me, unsure exactly what I would do with my purse and credit card while under the knife.

My plan was to buy a book before my appointment with Dr P, but that was thwarted by the bookshop being closed until 9 am and I was at counter 5 long before then!  I was ushered very quickly into Dr P’s consulting room and he agreed that the port should come out.  Gulp.  It was really going to happen.  He looked at his schedule and said that he would see if he could do it right away to save me waiting until 11 am!  I asked for some happy pills and told him I was very nervous.  He asked me if I had anyone with me and when I said that I was on my own, he said that I should try meditation!  It would not be safe to send me off on my own after the procedure if I was unclear what planet I was on!  I then produced my Emla and asked if that would help as preparation.  He laughed and said that it would do no harm!  I then repeated my request to keep the port and again he laughed, amused by my curiosity about it.

I was then taken back to the waiting room, and signed the necessary papers.  the nurse told me that the surgery would be at 11 am and I could go and have a light breakfast if I wanted to.  I decided not to as it would be too much like tempting fate.  No food = no need for general anaesthetic!  I headed straight to the bookshop and somehow one book turned into four and I wandered up to the easy chairs to read while waiting for the clock to reach 10.30 which was my reporting time.  Within 10 minutes my mobile phone rang.  The time had been changed and could I come straight back to Counter 5 and be taken to theatre! GULP!

I did my obedient puppy act and went to counter 5, and was led up to the 2nd floor to the Theatre suite.  After depositing my essentials and the four new books in the safe, I was met at the door by a gowned nurse who exchanged my shoes for a pair of theatre shoes which I could have gone sailing in.  then I was given a gown and theatre cap and had to change ready for the surgery.

This was the first time I had walked into the OT – every other time I was wheeled in, partially sedated and lying flat on my back without my glasses so this was a very different and far too clear view for my liking.  I climbed onto the operating table and the staff started prepping me.  My blood pressure was very high, unsurprisingly as I had absolutely no sedation or synthetic happiness.  Within about ten minutes Dr P arrived and the serious stuff began.  A small frame was placed over my head and a green gauze sheet over it so I was suddenly housed in a green world as the work began.  After the local anaesthetic was injected, the incision was made, but I continued to feel pain until a few more doses had been administered.  This is something I have experienced before – the need to have higher doses of local anaesthetic.  Dr P responded immediately when I said I could feel pain and he administered more anaesthetic.  The procedure took a good bit longer than I expected, because my port had been placed quite deep.  Finally it would out though and I felt (and heard) Dr P cauterising the area to stop bleeding.  Rather alarmingly, I first heard this as “stop breathing”, which scared me until I realised it was his Thai pronunciation!  He then removed scarring and finally I could feel the area being closed and stitched.  The whole procedure had taken around 45 minutes, excluding the prep time.  I was SO glad it was over.

The green gauze sheet was removed, and Dr P’s smiling eyes appeared above his surgical mask.  He was waving the port at me and was highly amused when I greeted it with a cheery “hello!”.  This was bizarrely reminiscent of giving birth and being introduced to your new baby!!

I handed my spectacles, my nose stud, and my amazing port and ushered out of the OT and back to the changing area and recovery area.  It was OUT, I had finally been de-ported and could already feel it easier to move my neck.  The Frankenstein button on my neck has gone and I no longer have this weird foreign body in my chest.  I certainly made life so much easier for me but for now at least it’s work is done and it is not helpful to keep on hosting it.

The anaesthetic is now wearing off and bruising appearing but that is all part of the healing process. Ironically though, this has resulted in a change of plans but not for the reasons feared.  I actually had gone ahead and booked my ticket to India for Friday (6th April) but with a fresh surgical wound, heavy baggage, a complicated journey and hot weather and dust of dry season it would not be wise to travel to India.  but that is a whole other story, for another day!  I will take a few days to regroup and recover a bit from the hectic first months of the year and my de-portation.

Excess baggage, more about starfish and dreams of chicken

There are many things on my mind as I pack, now at the end of an intense  week in Cambodia, ranging from intense strategic discussions, inspiring and humbling accounts from our programmes and a harrowing backdrop of the all too recent genocide in the Khmer Rouge years. Captain Paranoia is still with me constantly, but the events of the week have meant that he has had to compete for my attention.

At the outset of this week, I was present at an address by the Minister of Education here in Cambodia.  He gave a very powerful speech, apologising for veering away from the prepared words and sharing his own history about the Khmer years and their impact on education in the country.  He brought the realities of the genocide to life and I was riveted by his account.  Then he told an anecdote which struck an incredible chord with me.  He told us of one day when his wife had woken him urgently.  He was very upset, and told his wife she should have left him sleeping.  He recounted that he had been dreaming that he had been eating a chicken and it was so delicious, and he had been so hungry.  He said to his wife that she should have let him sleep until he had finished eating the chicken!  What an incredibly visual account of the horror they were living through.  His point was that, in the midst of that hell, he was able to escape in his dreams and no one could intrude on his dreams no matter how little control people were able to have in their lives.  It reminded me of my own starfish dream and how that had lifted my spirits and given me an escape from the preoccupation of the upcoming hospital checks.  It is indeed testament to the strength of the human mind.

However, despite that inspiring example of the chicken and my own private starfish collection in my mind, I am being mysteriously, or not so mysteriously, blocked from planning beyond these upcoming checks.  This is not unusual it happens every time.  Usually though, I only have to book a return ticket home afterwards so there is no great issue about that.  This time however, I should (if all goes well, fingers and toes tied in knots, touching any chunks of anything resembling wood and many other gestures of hope) head straight to India after the checks to see my family in law for the first time since I was diagnosed.  But despite several attempts to book my ticket to travel after the appointments, I have been completely unable to complete the task.  I don’t even have a reservation due to difficulties in booking online and the prospect of having a useless ticket if there is anything other than NED ahead.

After our meetings finished, I managed to fit in a visit to the popular Russian Market, initially to pick up some Cambodia silk which a friend had asked me to bring back.  I found myself drawn in to the glorious colours and somehow left the shop with silk sets for my close in laws too.  As I carted the heavy bags out of the market, I was wondering how many kilos I had purchased and whether it would be less than the 3 kilos which I think I had “spare” on the way over.  Then it suddenly dawned on me that I subconsciously broken through this block and managed to project myself into the “after the checks” unknown.  I will probably have excess baggage but at least I have been able to look ahead.  Now I just need to book that ticket!

And in a further coincidence, as I walked along the quayside yesterday evening in Phnom Penh, I passed the Tourist Information Office and there in front of me was a promotional poster for visiting Cambodia.  And the image on that poster, with its starfish and pristine ocean was incredibly similar to the image which I am recalling regularly from my dream!

What a funny old world we live in, with surprises and connections all around us.