The Great Escape Part 2

When I left Yangon with suspected pulmonary embolism, we all expected I would be back in a few days time.  My packing reflected that short timescale, as well as the expectation that I would be in hospital most of the time.  By the time I was eventually discharged from hospital (after a whole week) I had already worked my way through most of my clothes.  Most of my clothes comprising night clothes, a few tee shirts and 2 pairs of trousers.  And a swimsuit, just in case……..  that is a necessity.

The pain was mostly gone when I was discharged, but my blood levels had not reached the “therapeutic level” yet so I knew there would be a few more days in Bangkok before I could return.  I was told that it could take another 1 – 2 weeks for my bloods to not only reach the right levels, but they also had to remain stable within the” therapeutic range”.  As my strength slowly returned I was able to do some emergency shopping and get a few essentials to tide me over.

My first blood check was the day after my discharge from hospital.  I had already been back the previous evening for the dreaded injection into the stomach and as my appointment was not until 11 am I decided to nip over to the hospital early for my 8 am jab, get the blood draw and then return to the hotel for a relaxing breakfast.  My plan was sabotaged almost immediately as I learned that Dr W would actually be earlier and would see me as soon as the blood results were available in around one hour’s time.  With the blood draw done, I headed to the ward and had the second needle of the day, knowing I would miss the hotel breakfast unless my appointment with Dr W was extremely quick!

Of course I missed the breakfast!  It was not long after 9 when I was called in, but with the need to settle with the cashier afterwards, the hotel breakfast was clearly missed!  Happily though I did bump into a friend from Yangon and we had the chance to catch up.

Even more happily, and to my surprise, my bloods had just tipped over into the therapeutic range.  Dr W had looked subdued when I entered his consulting room, and with a kind of hang dog face, started with “I’m really sorry….”  My heart flipped over, expecting some kind of sinister news, and then he said “you will not be needing any more stomach injections after this evening!”  I was not sure whether to laugh, cry or squeal and probably did all three, as he leapt up from behind his desk and gave me a big hug!

I left the room with an appointment for the Tuesday, an adjustment in the Warfarin dosage, my blood results and a broad grin.  One more needle that day and then NO MORE NEEDLES for two whole days.  Two whole days without needles – just unimaginable bliss!

The following needle free days enabled me to begin that recuperating and rebuilding process as well as venturing slowly back into the scary outside world.  Those days passed incredibly quickly though, and I found myself again proferring my arm to the needle counter for the next blood draw.Another wait for results, with my eyes scanning over my book, reading and re-reading the same paragraphs and still retaining none of the words let alone any meaning.  Eventually, Dr W appeared and again I was summoned into his room.  No games this time, a big broad grin and he flamboyantly circled that day’s blood results.  A further nudge more comfortably into the therapeutic range.  He then prepared my report so that I could return home, pronouncing me fit to fly, providing me with 3 month’s supply of Warfarin, an instruction to adjust the dose again and to have regular draws in Yangon, and a return appointment for 3 month’s hence.  Which is also the time of my next oncology check, and the annual Big Check in October.

Finally I was able to  arrange my return travel and plan to get home to my non tilty bed, hubby, lush garden and super-cute puppy.  I had been away for two very long and scary weeks, longer than we all expected.  And that return home to Yangon was the long awaited Great Escape Part 2.

It does appear that this has been a “rare but dangerous” side effect of Tamoxifen and I have now been switched to Femara.  There were apparently several lobes of the lungs affected by embolism and it is no wonder that I was in such pain.  It was incredibly frightening.  I am very fortunate that cardio scans show no lasting effects or damage to the heart.  My confidence has been seriously knocked though and I think it will take a bit of time to rebuild emotionally as well as physically.  My 2012 pledge of resilience is incredibly pertinent and I am focusing intently on that.

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!

Little steps………

………. in the right direction.

Slowly but surely things are moving forward. Thursday has disappeared, and now Friday is following it.

I dragged myself to Counter 2 yesterday, and Dr W2’s nurse waved me on to Counter 3 (Dr W’s zone).  Instead of kicking my heels and disappearing, I confessed that I was expecting  a blood test.  She checked the computer, and sure enough, it wanted blood!  Needle number 1 on perma-bruised skin.

Then we headed to Counter 3 to wait for Dr W.  I was really nervous about this appointment.  Dr W has high standards for Twang Arms and I knew I was going to fail miserably.  Sure enough, he did say that the motion was not good enough for him – and I agreed it was not good enough for me either.  I mentioned that radiation had really stiffened it, and he nodded.  He said that it can make the arm very stiff.  He was very happy with my swimming plan and also suggested gentle massage to release the cording.  I can’t wait to swim again, but that won’t be for another few weeks.  He also said how pleased he was that my treatment was over now – and he remembered how much I had been dreading it.  He then went on to talk about the next stage.  He will want to see me every three months for the first two years, then six monthly until I reach five years post diagnosis.  At that point I will only be seen every year.  He told me that once a year will be what they call the “Big Check”.  This will involve mammogram, scans, blood tests and other tests to screen for any recurrence or metastasis.  After he answered my questions, he said he was very happy with my progress.  We left with the warm farewell of friends.

Heading back to Counter 2 we learned that Dr W2 had been delayed so we had a bit of a wait.  As usual, we heard him arrive before we saw him!  We sat down and he had a look at my blood test results – and then announced in his great voice that I was post-menopausal!  He listed some of the symptoms I should be aware of – hot flushes, insomnia, mood swings for example.  Well 2 out of 3 ain’t bad – the first 2 are familiar.  Dr W2 seemed particularly concerned about hubby J and how he might be endangered by a post menopausal wife!  Dr W2 then had a good look at the port, as well as the skin and scarring following radiation.  He said that he would flush the port after the appointment.  He also said that he would be seeing me every 3 months, and next time he would make a decision about whether to de-port me or not!  He prescribed more Tamoxifen and calcium.  He was also very pleased that the treatment had gone to plan and that I am on this side of it.  Not half as pleased as I am!!  He waved us off into the night, with me clutching my precious fitness certificate!

With the delays, it was now nearly 7 pm.  I knew I should be heading up to the 5th Floor for port flushing, but I was concerned at how late it was.  I was also (more) concerned that for port flushing I would want the magic numbing cream in place and that takes an hour to take effect.  I chickened out and asked if I could come in the morning, aware that it meant drawing out the apprehensives but opting for delay nonetheless.

My mood was light when we finally left the hospital, though I knew I would not feel relieved until the flushing was over.

Sure enough, I did not sleep well last night.  I had an uncomfortable sense of foreboding, and got up early ready to head for the inevitable.  I headed to Counter 2 and was waved on towards the 5th Floor – eek!  It was lovely to see the oncology nurses again and they were happy to do the flushing.  They seemed a little bored as there were no other patients and I had a vision of 4 nurses all having a go!  I waved my magic cream and was told I would have to wait one hour for it to take effect.  No problem!  Delaying the inevitable and prolonging the agony are fine by me!  The cream was applied and I headed down for a snack with a promise to reappear in an hour’s time.

I did not enjoy the tea and snack.  I just wanted the flushing to be over.  I headed back upstairs reluctantly and was ushered into the treatment room where a clanky trolley was waiting for me.  Unable to muster up any more delaying tactics, I lay down and let the nurse prep me for the needle.

The port area has been really tender and I have managed to come up with many alarming possibilities for this to be so, including radiation port melt and port clog from lack of use.  The nurse pressed to get the right spot for needle insertion and with a few “oohs” and “ahs” and grimaces I was glad when the needle was in.  Except it wasn’t!  Another push and I felt it go through the skin this time – OUCH!!

“Good blood return”  she told me.  Glad to hear it, I thought!  So it is not port clog causing the discomfort!  She worked away, putting what looked like a syringe of saline through, and then brought another syringe.  This was the Heparin to prevent clotting.  Within 10 minutes the process was finished and the needle came out with another mild squealy moment.

I was cleaned up, had a plaster put on over the site and within moments was ready to run away.

So now I have a break from the hospital for 3 months, although I will see Dr C at the Cancer Hospital for my radiation check in one month.

I left the hospital, with another task in hand. I had to get the paperwork cleared for us to leave, and then get our tickets issued.  What I had not realised is that today is a holiday and that many offices were closed, including the travel agent holding our booking.

It will probably be another restless night hoping that our tickets materialise in the morning as we are scheduled to fly tomorrow night…………..  Scotland awaits!