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.


 

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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

Friday re-port

Indeed, I did not sleep well on the Thursday night, despite being tired and staying up later than was wise, while I took advantage of the good internet connection to update family, friends and Facebook.

I slathered my Emla mind and body numbing security blanket on the port area plenty of time in advance, and after breakfast headed to the hospital and Floor 5 where the oncology ward is situated.

The lovely oncology nurses welcomed me like an old friend and we started talking about the port.  They remembered the difficulties there had been last month at the cleaning in Yangon.  I knew that we would start off by trying to flush it, but what would happen if it did not give a blood return, I really did not know.  I was anxious about whether it would give a return, about what could be causing a blockage, and who would take it out if that was what was indicated.  I also knew that I had to leave the hospital by mid morning if I was to catch my flight.  That really added to my nervousness.

The nurse took me into one of the rooms and headed off to get her clanky trolley.  All too soon, she was back with all the shiny, sharp kit and she started cleaning off the Emla cream.  She said that my port is a very deep one and that that it might have shifted a bit.  It is also possible that muscle development (particularly due to the amount of swimming I have been doing) could also be causing it to be slightly moved.

She prepped me as my heart rate steadily increased and once everything was in place, the needle appeared.  As always I closed my eyes tight, took a very deep breath in, and held it when she told me to. The needle was in and she started the procedure.  We both knew that this moment would tell us what was happening with the port.  “Look at this”, she said to me – I half opened one eye and she was grinning as she held up the small catheter which was filling with blood!  After all the stress, worry and anxiety the port was giving a blood return in record time and with unprecedented ease!  The whole procedure was over very quickly and the needle came out as easily as it had gone in.  I was cleaned up, the site covered and I was sitting up and putting my shoes on a few minutes later.

This was probably the easiest, quickest and least painful of all of my port experiences.  How ironic!

So no de-portation, no clot or fibrin shield and all finished in time to run back to the studio flat, finish packing my things and head straight to the airport with NED in my head and my heart.

I know that April will come around quickly with its scans, new round of anxiety over NED and tumour markers, and of course the possibility of another port story.  But for now I am back in Yangon with results which are as good as I could hope for and I can focus on my priorities – harmony, vitality and adventure!

Back down to earth

with a very big BUMP!

I have had a lovely Christmas and New Year break, a trip to the beach, company of lovely friends and now back at work.  My early morning routine has continued with my sunrise swim and all in all, I am feeling well and optimistic.

So why the start of some stomach churning and anxiety?  Because next week, already, my next 3 month check comes around.  Some one has fast forwarded the calendar and suddenly I am dusting down my travel bag, booking my flight and preparing to head to Bangkok for the scary checks.

Now, this might not be the Big Check, but it is still quite a big deal.  First, I will see Dr C – my Radiation Consultant for what I expect to be a fairly quick check.  It is now just over 6 months since radiation finished and I feel that my skin has healed pretty well.  It is still pretty sensitive but I am not sure how much of that is due to radiation, and how much due to chemo, surgery and those wretched shingles.  There is also a question about possible damage to one lung from the radiation.

Then I will have a full on day which will involve fasting, blood tests and big needles and then review and consultations with Drs A, W and W2.  They will be looking particularly at my tumour markers as they have been a bit above the normal range.  That still freaks me out, I have to say.  They will also check and see if they see any other signs which concern them.

And then there will be the port story.  I have been rather reluctant to share the latest port news.  It was due to be cleaned in December, and after a logistical tale, a kit was provided here so that my Dr could clean it.  Unfortunately, the old port was rather uncooperative this time.  It pointblank refused to provide a blood return, despite reinsertions of the needle, manoeuvres to try and jiggle the vein into producing blood, and technical phone support down a continually breaking phone line from Bangkok.  Interestingly, there was no difficulty in infusing the saline and as guided, two small infusions went in easily.  But time after time, there was no blood return.

Eventually and reluctantly we had to call a halt to this fun, and the guidance from the oncology ward was to wait until the next check.

So no chocolate frog, and no sense of relief that the port was once again cleaned and shown to be working properly.  I had a strange sense of disappointment mixed with worry about what could be causing it to be uncooperative.  It could be caused by a “fibrin sheath” which is (from what I understand) an area where there has been some tissue re-growth around the area where the needles connects with the area which connects to the vein.  This would mean that it is possible to infuse fluids as there is a “push” during this process.  However, when the syringe attempts to draw back from the vein, the suction on the tissue causes it to close and there is resistance.  Apparently there are medications which can melt such a tissue growth.  Sounds very appealing.

The upshot of this is that there are a few scenarios regarding the port.  Firstly, and if the tumour markers are not elevated, and if Dr W2 is happy with all other signs, then perhaps he might think about de-porting me.  In some places, de-porting takes place right after the final chemo, and in others the Drs prefer to keep the port in place, just in case.  Just in case, scares the wits out of me, because we all know that it is short for – “just in case we need the port again for more chemotherapy”.  Yes, I know it is sensible to keep it in place, just in case, because it is much easier to take out than put back in, but the underlying questions is – “so, do you think I am going to need more chemo????”  So Dr W2’s decision about whether or not to de-port me is truly loaded and one I am very anxious about.  The double edge of this anxiety is that if get the very welcome news that I can be de-ported, then I have another surgery ahead of me to do so.  I know it is minor, but it is still scary!!

Now de-porting is one scenario.  Another is that for whatever reason I am not to be de-ported this time.  In that case, I will need to have the port checked out.  I am not sure if they will try and do a regular “flush and clean” and see if there is a blood return, and if the obstinacy or fibrin sheath have dissolved.  If it has then I guess that will be fine, though I will have a continual anxiety when it comes to each port flush.  If it is still problematic, then I am not sure what happens.  I have visions of it being flushed with battery acid or some other caustic substance to free up the blood flow.  You can see I am really helping myself here!  If the flush and magic medications to unblock the blockage do not work, then I really do not know what the next step would be.  I think it might involve knives though!

Although the port decisions are preying heavily on my mind, I have the bigger, over-riding concern that the Drs find something that concerns them and which could indicate signs of recurrence or spread.  And please don’t try to reassure me.  The reality is that we have these frequent checks because there IS a possibility and so that it can be spotted early.  I have heard those life-changing “you have cancer” words in the past so I am not reassured by “don’t worry, it will be all right”.  Because it might not be.  That does not mean I am being negative and defeatist – oh no,  not at all!  I am as determined and as pig-headed-stubborn as ever, and will rise again to any challenges that might be thrown in my path.  I just have to have some mental and emotional oomph to be able to deal with whatever comes up.

So here I am again,  preparing for another Bangkok visit and packing a mix of anxiety, fear, gratitude, anticipation and worry in my travel bag.  More than anything, I will be seeking to bring back NED in my little case for the return journey.

Trans-portation and de-portation adventures

Tis the season to be jolly, fah la la la la…..

Christmas is indeed approaching and there are quite a few signs here in Yangon.  Many more than there were signs of Pink October in fact.  I am in a very different place to where I was this time last year – but that is a topic for another post.

As well as Christmas approaching, the time is also approaching for my port flushing procedure.  Ouch!  Just to keep me from fretting too much about the procedure itself, a complicated logistical puzzle is forming to take my mind off the scary side.

A special kit is needed for the port – it includes the specific port needle, the anti clotting agent Heparin and various other goodies.  We don’t have a kit in Yangon so I have been working hard to try and get one trans-ported from Bangkok so that my Dr can do it here.  It is turning out to be rather messy!

We seem to have got over the confusion about where the kit should be collected from and delivered to.  We have also clarified that the Heparin needs to be kept refrigerated as it is a cold chain product (I have no idea what that means except that it has to be kept cool).  So far so good.

Now, remember that the port is implanted, as in under my skin.  Unlike Teddy who had his on top of his fur, but that’s life!  The whole reason it has to be flushed regularly is because it is connected to my jugular vein and into the heart (yeeech – heebie jeebie jeebie….)  So while I still have my port and while I am not getting chemo infusions this flushing, or cleaning is important.  Dr W2 is still undecided when or whether I can get my port removed, or be “de-ported”.  So in the meantime, I have to organise this “trans-portation”.

So when organising the logistics, I was particularly alarmed then to see the following instruction in the email, for the collection/delivery of the cleaning kit.

“As far we understand from our client, the port is with her ( the address as below).  It must collect from her and bring it to hospital for cleaning and flushing and return back to her”.

I cannot tell you how alarming that is – the thought of someone turning up, somehow prising the port out from under my skin and carting it off to get cleaned at the hospital!  Then bringing it back and putting it back in!  Yikes!  And of course I am keenly aware of the irony that if it was removed or removable then it would not need to be cleaned!

So I am waiting to see what the latest plan is. My Dr goes on holiday soon so I do have to get it done in the next week,  or I would have to go to bangkok.  What an rollercoaster!

These adventures will continue while I still have my port – so I can’t wait until the ex-port has been finalised!

Port flushing – Chocolate frogs and Teddy bears

People have often expressed surprise that I opted to have my treatment and care in Asia and not returned to the UK.  When I describe the level of care, the facilities and equipment of the hospital and the promptness of appointments and treatments, surprise usually turns to envy!

When you add that to the fact that it is so much easier to work at convalescence and recovery in a warm climate, with access to an outside pool, and in an environment of lush vegetation and tropical flowers it is not difficult to understand why it was also preferable to go through the chemo cycles in this part of the world.

There is another factor which is important too, which I have mentioned in passing but I want to highlight now.  That is the exceptionally supportive medical care I have here.

When I first consulted my GP here, I did not know how big a role she would play in the coming months, and how fortunate I am.  In fact, when I first walked through the door I had not even met her before.  That was soon to change, and she was in constant contact while I was in Bangkok at the time of diagnosis, surgery and treatment.  In my return visits home between chemo cycles, she was there to keep an eye on me in my weakened chemo state, and to make sure I was fit enough to head back to Bangkok for another chemo bashing.  I have described my encounter with pneumonia and how she got me through that.

So I was honestly not so surprised recently when she offered to use up some of her free time when in Bangkok to be trained how to clean and use my port.  This would mean that I could have the port flushing done regularly here, without having to travel to Bangkok for the procedure.

Arrangements were made and a few weeks later when my Dr was in Bangkok, she spent an afternoon on the oncology ward with the nurses, becoming familiar with the port and the procedure for flushing it.  There was just one slight problem.  My hospital is not a teaching hospital, so unfortunately my Dr could not practise on a real person, but could only observe.  I hadn’t realised that.  But there is always a solution and the solution to this was inspiring!  My Dr was provided with a sample port so that she could see how it functioned.  And a teddy bear to practise on!!

I approached my port flushing time rather anxiously.  I was reassured by photographs of the teddy having his port flushed and was glad to know that he not only survived but suffered no ill effects.  I was less impressed that teddy did not need the magic Emla numbing cream.  Good for teddy but don’t expect me to be that brave!  I was very nervous at the prospect of being the first human patient.

The day of the flushing I was extremely nervous.  I don’t like needles, and I really don’t like having my port flushed.  And for all that teddy didn’t flinch when he had his port flushed, he did wear it outside his skin, and not hidden underneath like mine so it was a bit easier to find.

It was also quite alarming to see my Dr all gowned and masked for the procedure. I think we were both probably as nervous as each other.  However her training had been thorough, she was confident, and she had all the necessary accoutrements, needles and necessary meds.  We had a slightly scary time when the blood return did not work at first and needed a bit of exploration and re-inserting of the needle.  There was great relief all round when the blood return did work and the flushing could take place.

There were two people wearing very wide grins after the procedure.  That’s not including teddy, who was probably grinning too.  I was even given a crunchy chocolate frog when back in the waiting room – a treat usually reserved for the younger patients, but which I very gratefully accepted when offered!

So I consider myself extremely fortunate.  I have the best of medical care and treatment, a warm and pleasant environment to support my recovery, the inventiveness of teddy bear training and the incentive of a chocolate frog to make sure I don’t forget to get my port flushed!

The first 3 month check

The strange post treatment phase has been a time when life has not been lived around hospital appointments.  However, not terribly far on the horizon has been the prospect of the regular 3 monthly checks.  I am glad that I have such regular monitoring, but at the same time am so scared of recurrence that I dread the checks as much as I value them.

It seems like no time since we were last at the airport, travelling for my 8th chemo, but it was over 4 months ago.  Of course the chemo was followed by the radiation and then home leave in Scotland, so it has been not long over a month since getting back home and picking up the reins of a life again.

It was a strange feeling being at the airport and it reminded me more of my first departure in October, more than the subsequent visits for some reason.  Perhaps the fact that this visit was a check and held the same uncertainty as the first visit did.  The clouds were heavy and black and our short flight pretty turbulent, a bit like my nervous stomach I guess.

We were quickly in Bangkok, and arrived in our studio before sunset.  I was happily distracted by good internet connection and spent a good part of the evening catching up.

All too soon, it was morning though, and that meant one thing.  Although my appointments were not until the late afternoon, I had to have blood taken and some of the tests need me to fast beforehand.  So I headed round to the bloodletting counter and after revising some timings my name was called by the needle lady.  She recognised me, or at least she recognised my battered chemo veins and my pathetic whimper asking for gentle treatment.  A number of vials were filled quickly and the first needle bit was finished – phew!

I was then free until the first appointment later in the afternoon but in my usual wittery self, was unable to really be able to relax and enjoy the time.  I found myself wishing the time forward and before long it worked and I headed along to my first appointment.

This was with Dr A who has taken over from Dr P and a kind of GP.  He looks particularly at my blood pressure and blood sugar as they are a bit troublesome.  The steroids of chemo had caused higher blood sugar levels and with a history of diabetes in the family it is something that needs to be monitored.  Dr A noted that the fasting sugar was fine but the other one a bit high, not enough to be considered diabetic, but he termed it pre-diabetic.  Great, but no surprise.  So we had a chat about carbohydrates and fruit and clarified the need to avoid too much or too many.  Unfortunately mangos are to be strictly limited, which is really hard just as now as they are in season and just delicious!  My BP check, although high before the appointment due to my nervousness of the checks, was fine and well under control.

More importantly though, Dr A went through my other blood results and was really pleased that liver, kidney function are normal, cholesterol good and red and white blood counts getting back to normal.  The body is amazing in the way it heals and recovers after such heavy treatment.  So he was very pleased and asked me to come back in 3 months.  Phew!  One down, two to go.

Next was my appointment with Dr W2, the oncologist.  We had a bit of a wait as he was delayed but before long we heard him whistling before we saw his smile.  He called me in, and firstly examined me, checking the radiation healing, and my surgery area.  I almost forgot to tell him I had had shingles, and he checked that too.

Then it was time for him to look at the bloodwork that he had ordered.  He was similarly pleased with my recovery, but noted one result.  This is the CEA or Carcinogenic Embryonic Agent and it sounds pretty sinister to me.  He said that this one was higher than the last time it was tested, back in May at the end of radiation.  This immediately set of loud clanging alarm bells in my head and I asked him about the CEA.  He said it is sometimes called a tumour marker, which I have heard of, and this can be an indicator of some progression or recurrence, but can also be caused by other factors.  He said that smoking can cause it to be elevated – and I told him that did not reassure me as I have never smoked!  I knew I was going to be Googling as soon as I got back to the studio!!  He told me that it is not anything to worry about at the moment, but that he wants to keep an eye on it and see me again in 3 months.  He had said in May that he would make a decision about whether or not to de-port me this time, but we did not discuss it, and I am pretty sure that is because there is no point in taking the port out when the marker is slightly high. Hmmm.  So then we talked about another favourite activity – flushing the port.  He said it should be flushed then, and again in 6 weeks, at the midway point between checks.  I asked if I could have it done in the morning (today) and he laughed and asked if I had forgotten my magic numbing cream (though of course he called it by its proper name).  I said that I still had to see Dr W and that it would be very late so best to do it in the morning, and he agreed.

So my heart was a bit heavy when I left his room, even the general message was good, the tumour marker was not something I had wanted to hear.  It made my wait for Dr W (the surgeon) a bit gloomy, as I watched the women whose appointments were ahead of mine.  I also knew that Dr W would have something to say about the Revenge of Twang Arm.  His assistant kept me updated on how many patients were in front of me, bless her, and soon it was my turn.  After a warm hello I was sent straight to the couch for examination.  He examined me very thoroughly, which I found reassuring and he found a very tender spot under one arm which seemed to be linked with the shingles nerve. He said he saw nothing suspicious or worrying. PHEW!!  I do like to hear those words said out loud.  As expected he was not impressed with Twang Arm’s limited range of motion.  Thanks, Radiation.  Thanks, Shingles.  He was particularly interested in my hair and the Annie Lennox look!!  He asked what it was like before and I told him it was a different colour.  He asked if it had been curly before, as there are definite kinks appearing. He was highly amused when I explained that I had paid large amounts of money at the hairdressers to get curls in the past.  Somehow I preferred that to the chemo curling process!

We then sat down and he went through the details from his surgeon perspective.  Apart from Twang Arm’s stubbornness he was pleased with my progress.  He saw that Dr W2 had noted the elevated CEA tumour marker and I took the chance to ask him about it.  He also said it was nothing to worry about, but that we should keep an eye on it.  Apparently if it rises it can also indicate colon cancer, but was not at the levels which would indicate breast cancer, so he seemed very cool about it.  He then asked if I have had a mammogram since diagnosis, and I said that I hadn’t.  As I had expected, he said that he wanted to do the Big Check at the next check up as it would be around the one year mark, the time I have heard called the Cancerversary.  He said that he had found nothing worrying, but of course the scans and mammo will give much more information and detail when I come back in November. 

So it was all reassuring – up to a point.  I really feel much stronger and fitter and the blood work was very encouraging.  Except for that CEA marker of course, which was a real cloud.  Predictably I was on Google as soon as I hit the sofa back at the studio, and looking up causes for elevated CEA.  I did get a bit of insight, but not a lot of reassurance to be honest.  The markers can indicate some progression which is really scary.  However, the markers are apparently not a solid and reliable indicator on their own and in isolation and they should be tracked over a period of time alongside other tests.  I also read that a minor variation (less than 2) was not worrying (ooh good – my rise was 1.1) – but as long as it is within the normal range.  Oh.  Mine was not significantly raised but is above the normal range without a clear cause.  It was at the upper level of normal for a smoker.  The one nugget I got from Google was that dehydration can concentrate the CEA and raise the result.  I am hanging on to that a bit as I had fasted before the blood tests, and therefore was probably slightly dehydrated. 

So the day ended on a mixed note.  Relief that I am doing well and recovering, and of course that there was no obvious sign of any nasties.  Relief that I had got through the first review check and had some really encouraging words.  This was tempered however, by the trepidation of the port flushing in the morning, which I really dread.  Most of all, though, was the niggle of the CEA marker and the knowledge which has lodged in my brain that there is a slight possibility of something unwelcome going on.

I am a worrier by nature.  It is my best skill and I am an expert in the art of tormenting myself.  I managed to rationalise the whole thing before I slept, but when I woke in the night, my mind had turned it into a big scary beast. I usually get rid of these thoughts by focusing on the coming day – but with the prospect of the dreaded port flush I found myself between a rock and a hard place in terms of seeking reassuring thoughts.

Happily, the day arrived in bright and sunny form which helped to dispel negative thought and I focused on getting back to the hospital and getting the port flush over and done with.  I headed to the oncology ward on the 5th floor and had the magic numbing cream slathered over the port area.  After the usual hour to let it take effect I returned and let the wonderful oncology nurse get on with the dreaded task.  The needle was soon in and apparently my blood return was again good and the port was quickly cleaned and the needle could come out again.

So I was able to leave the hospital, and seal closure on my first 3 month check.  I am due to come back in November and know that I will be really stressed by the Big Check, the marker contributing significantly to that stress.  In the meantime, however, it’s time to continue with recovery, do all I can to heal – and to continue to see off Twang Arm!