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.

Post Radiation Review and Homeward Bound

Well we arrived back safely in Bangkok, no somersaults or acrobatics in Dubai Airport this time which is a bonus.  Jet lag is not too bad, although it was strange being woken in the middle of the night by hubby J chomping crisps.  Being hungry at weird times is the worst part of jet lag I think.

The first thing to do win Bangkok was to christen my new special post surgery swimsuit, one of my UK shopping acquisitions.  I have missed swimming terribly and Twang Arm is harbouring a sense of its superiority which is about to come to an end.  It was wonderful to be back in the pool, although my swim was a gentle introduction so that I can gradually sneak up on Twang Arm and before it realises, it will be vastly weakened!  Well, Twang Arm has been mean to me so it is time for revenge!

Yesterday saw my Post Radiation Review appointment with Dr C.  It is such a good feeling, having a hospital appointment in the knowledge that there are no scary procedures likely.  I was still a bit nervous as you never know for sure that needles won’t suddenly appear.  The usual checks were fine and after only a short wait, I was called to see Dr C.  He examined me and was pleased with the new skin coming through as the old, charred skin peels off.  He said that I might experience an odd sensation of……, and then found the word he was looking for – lightning!!  I know the post surgery nerve damage gave me very odd sensations in the first few months after surgery, but that has faded and so far I have not felt any lightning across my scar.  That would be a real touch of the Harry Potters if I had a Voldemort scar!

Dr C was pleased with my recovery from the radiation and the remainder of our consultation focused on fixing a date for the next review appointment in 5/6 months time.

With this appointment over, I am now FREE for nearly 2 months until I see Drs W and W2 for my 3 monthly check.  I cannot tell you what a wonderful feeling it is not to be planning my life around the next horrible treatment.  I just need to keep my fear of recurrence or spread under control and wallow in this a bit.

Our turnaround in Bangkok should be quite quick now and we hope to travel back to Yangon tomorrow.  It will be such a treat and novelty to unpack, knowing that the cases can stay in the cupboard and gather dust for a while.

The next benchmark will be a quiet return to the office on Friday, which will be 10 months to the day since I was last at my desk.  I wonder if it is still there and if much has changed!  I know I have.

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!

The clean up

It’s another sunny day in Bangkok following another night of powerful storms.  A power line outside our window crashed and flashed with a surge of electricity and sudden bursts of wind accompanied pelting monsoon rain.  The innocent blue skies and sunshine made it hard to believe that the storm had been so violent, but there was evidence that it had not all been a frightening dream.

The clean up in the city continues, people are moving back into the areas affected and work is resuming.  However, Central World is still smouldering and the damage from the trouble is all around.  It feels as if it will take a long time to heal and repair.

The clean up of my post radiation skin also continues.  The radiation borders were designated by marker pen covered with transparent medical tape.  At my last session, the staff began to remove the tape, but my tender skin squealed and attempted to peel off along with the tape – OUCH!!  We all agreed that it would be best if I took the tape off myself in my own time.  Over the past two days I have slowly, delicately and somewhat painfully managed to remove all the tape.  Unfortunately I have also removed some skin, but not caused any breaks in the skin that were not already there.  I have also managed to clean up some of the markings, but have to be very careful not to immerse the skin, scrub or use any soap that might hurt the skin.  Have you ever tried cleaning with those restrictions?  It is not easy and it takes time.  My poor tender post radiation skin feels as if it is still smouldering too! The radiation continues cooking me for another couple of weeks apparently!

It also feels as if it will take a long time to heal and repair.

Can it be true?

It is a bright and sunny day in Bangkok, and it hasn’t sunk in yet …………………………….

……. but it is there in black and white – and blue and red – my final radiation zap!  I even get 2 neat lines underneath the final session just to make sure I don’t get confused and come back for more! Finally, 25 out of 25 sessions done! One Feisty Blue Gecko well cooked and done!

So it is goodbye to the Bunker with its lead lined door and red flashing light ………………

Goodbye to the blue mould that has held me in the same position ………….

and the beeps, whirrs and rays of the machine.

I will see the staff again at follow up appointments, so I have words of immense thanks and gratitude to them, rather than a goodbye.

And hello the new phase of RECOVERY!

I realise it is exactly 7 months ago today that I had my first chemo session, and – how weird is this? It is 8 months TO THE DAY that I first discovered the lump.  The past 8 months have been the most challenging, frightening and difficult of my life, yet I have so much to be thankful for.

It is far from over though.  The heavy duty treatment which was set out when I was diagnosed is now completed. I have appointments this week with Drs W and W2 for a review of how the treatment has gone, and to plan the next phase of care.  We will also find out if I am fit to travel long haul and get back to Scotland for long overdue leave.  I will have review and follow up appointments after my leave.  Depending on how Dr W2 feels the treatment has gone, I may have another surgery – my de-portation 😉 or removal of my port.  I have started taking Tamoxifen (another story for another post) as a measure to prevent recurrence.

I also have a lot of physical recovery to focus on.  Twang arm has been attempting to stage a comeback during radiation and is really stiff and painful.  Slowly but surely revenge is coming for Twang arm.  The skin changes and burn from radiation need a bit of time to heal.  The nerve damage from surgery also needs work to repair slowly. I still have a number of reminders of chemo, especially Taxotere – numb fingers, tender feet, aching and tired legs, sensitive skin – and BALDNESS!  These take time to get out of the system, and some reminders may be permanent.

It feels as if Bangkok and I are both nursing our wounds and scars and looking towards the healing stage.  We have been through something life-changing, unforgettable and traumatic.  Although things will never be the same again, for the moment at least it feels as if it is time for healing and recovery.

Today, Bangkok also feels as if it is moving away from the past dark days.  There is a huge clean up going on, the sky train and other public transportation is getting back to normal.  There was a violent thunderstorm last night which seems to have cleansed the atmosphere and the day is fresh and bright today.

Life changed for sure when I discovered that lump, and although it will be different, I feel at last as if I am on a different path now that I am on the other side of all the heavy stuff.   I am under no illusions – I know that recurrence or metastasis is a risk, and once diagnosed the fear of recurrence is ever present.  I know that the old port might be needed again one day and I could have to face heavy treatment at some point again in the future.

But for now I need to bask in the sunshine of this phase and enjoy the fact that I have got through all of this.

Just one more………..

Today’s news in brief from Bangkok’s Breast Cancer Correspondent.

• We have a curfew again tonight, but just the one more (all being well).
• Today I had my 24th radiation zap out of 25, so I have just the one more (all being well).

Roll on tomorrow!



3 more days of curfew and cooking

The sun has set on another day here in Bangkok and the theme for today seems to be “charred”.

The city is unrecognisable in so many places and it feels as if it still in shock after the violence and bloodshed of the past days.  The protest has been disbanded, but the burning continued as buildings were torched.  Today we have seen a smouldering and charred city and many places we know have been destroyed or damaged.  Our rendez vous spot and base of much chemo treat shopping, Central World at Chidlom has been gutted and is reported as being in danger of collapse.  It seems ironic that my post reflecting on how much life changes “Things will never, never, never be the same again” was inspired in Central World – and now seems eerily pertinent to the place itself.

On the positive side, the city is not all that is charred.  We left very early today for the hospital, unsure of how things might develop outside.  I arrived about 45 minutes early, unsure of whether my session would be able to run.  Incredibly, I was ushered in and seen almost on arrival.  Apparently, a number of patients were not able to get to the hospital and there was a free slot when I arrived.  So, incredibly, session 22 went ahead quickly and smoothly and the charring on my radiation site is developing nicely.

Again, I was told to hurry home and stay safe after the treatment.  I gave the same advice to the staff – they seemed quite amused and touched!

Bangkok has been placed under night time curfew for another 3 days.  Coincidentally, now that 22 radiation zaps are done – I have 3 cooking sessions left!

Bunkered down – Bangkok’s Breast Cancer Correspondent ;)

When I started this blog after my diagnosis, I did say I was not sure where this tail of the unexpected would lead.  I did not imagine in my wildest dreams that I would be a (self -appointed) Breast Cancer Correspondent from Bangkok during these troubled times in the city.  Looking back over my posts of the past few days, I see that this is what seems to have happened.

It is in no way my intention to go into detail on the situation here.  There are plenty of reports, images and analyses from experts and eye witnesses.  No, my insight is purely on how it affects my breast cancer experience.

Back in March, my 7th chemo coincided with the beginning of the protests and even at that stage I connected it with my breast cancer treatment.   We returned to Bangkok for chemo 8 on 3 April and have stayed on for the radiation treatment.  The protests have been part of life all the time we have been here.  We have not felt in any danger, but have felt the effects in many ways.

The past few days we have seen a considerable escalation in the tension.  As time passed following Monday’s ultimatum to the protesters, I felt a tangible ease of tension generally around us.  I was able to have my 20th radiation zap and meet with the Consultant yesterday.

When I woke up this morning and checked email and news, I abruptly learned about the move to clear the protesters.  A wee sneaky peek from the rooftop showed plenty of smoke and I could see the helicopter circling over the area, as well as a small fixed wing plane up above.

We all know that it has become a critical day for Bangkok.  Tension and nervousness have been palpable.

As my appointment time approached, it was matched by increasing speculation of a curfew.  It was soon confirmed that there will be a curfew across Bangkok from 8 pm tonight.  I was fairly sure the hospital would phone if my treatment would be cancelled so we prepared for our very short trip.  The streets were pretty quiet and even the little tuk tuk belonging to our apartment block was unable to run.  Fuel is restricted because it has apparently been used in the fires, and our little tuk tuk was out of juice.

Things seemed to be running fairly normally at the hospital and on arrival I was swallowed up by the usual routing – Blood Pressure, weight and temperature checks, change into gown, wait and then into the Linac radiation Bunker. (The treatment room is called the Bunker – how ironic!) In the Bunker, the staff soon made sure I knew about the curfew and knew not to go out this evening.  Then I was put back into my mould, covered in the jelly pad and left to be zapped.  Number 21 was soon over, and I was again removed from my mould, released from the Bunker, and sent to change and to go straight home.  Already the hospital was showing signs of the impending curfew – cafés and shops closing and people rushing to get home. I have just learned that this is the first curfew Bangkok has seen in around 15 years so the nervousness is highly understandable.

We reached home quickly, a good 3 hours before the curfew was due to begin and settled in for the night.   From one bunker to another.

We have no idea what tomorrow will bring and no idea if we can head to the radiation bunker for Zap No 22.  We are safe and sound and bunkered nicely down for the night as the dramatic reports and footage from other parts of the city continue to be aired.

Going for the burn!

This is not a reference to the extreme aerobic exercising trend in the 80s which saw burning muscles as an excercise goal!

Nor is it a reference to the situation in Bangkok, although there have been plenty of images of burning in the past few days.

Incidentally, the situation has in fact felt much less tense today, from our perspective.  The talk of curfew came and went, with the decision not to impose any curfew at the moment (thank you!).  Yesterday it felt as if there was a great deal of nervousness about the 3 pm deadline extended to the protesters to leave the protest site.  We needed to get some food shopping and headed to the supermarket just after lunchtime.  I was quite astounded at the numbers of people in the supermarket, and the amount of food they were buying!  There were long queues at the checkouts, where I have never seen more than 2-3 people in line before.  Fully laden shopping trolleys added to the queueing time.  It quickly became apparent that we are not at all good at panic buying!  We came out with pretty much what we had planned to get, such as bread, milk, fruit and mushroom paté!  Returning home with our pathetically small bag of shopping, we found the streets full as people were heading home.  The 3 pm deadline passed with no seemingly great movement on either side, some talk of talks and no real sign of any progress towards resolution.

No, the actual reference of the heading of this post is, as usual, to my constant companion – my treatment and how it is affecting me!

The burn of the radiation is really stinging and annoying my neck and clavicle area.  It feels as if I have been out in the sun with a very low cut top – as if that is likely these days, or any days!!  The surgery area is changing colour and the skin tight and extremely dry.

I saw Dr C this evening and he was happy with the burn so far!  I am also fairly happy with the burn so far – it is not (yet) as painful as I had feared.  I have 5 sessions left so I am really hoping that my skin will be able to get to the end of the treatment without breaking……….. but let’s see!

Finally – the Radio Therapy weekend.

I have a little “Radio Therapy Passport” which the hospital has given me.  It is a cute little booklet containing helpful radiotherapy information and my treatment schedule.

Most importantly, it sets out when I have treatment sessions and which are my days off.  Essential for those of us with chemo brain!

My schedule is 5 treatments a week from Tuesday to Saturday over 5 weeks (from April 21 – May 25 – as long as there are no delays or unexpecteds).

A glance at my schedule above, shows 2 pieces of good news for the day.  Firstly, Treatment No 19 was ticked off today – that means only 6 are left.  Surely I can get through that?  Secondly, this is Saturday evening and now I have my 2 days off – so it’s my RT weekend!

And since I have started out on this new Jelly version of Radiation, I reckon there is only one fitting way to mark the weekend………………

…….. at last – the ice cream I was dreaming of, to complement the jelly!