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!

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!