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!

Scary Thursday

I have a knot in my stomach and feel as nervous as I did before the Scary Chemo Sundays.  Tomorrow is Scary Thursday.

In the late afternoon I will see Dr W, my Breast Surgeon.  I have not seen him since just after Chemo 6 and I am pretty nervous about it.  Firstly, he will be most unhappy at the revenge of Twang Arm (I am too).  Since very early in the radiation, Twang Arm really stiffened and has become painful again.  I have continued to excercise but the range of motion has decreased quite a bit.  It has not helped that I have not been able to swim.  I am also nervous as I do not know what he plans next for me.  Will he want to order a review mammogram?  An ultrasound?  Scan?  Will it involve needles?  Will these show up any scary things?  Scary stuff.

Then I will see Dr W2, my Oncologist.  That will involve a blood test.  The blood test will involve a needle – eech!  Dr W2 also wants to flush my port – that will definitely involve a needles and I hear from others who have this done, that it hurts.  Ouch!  He will also want to carry out some review tests which are scary.  I am also apprehensive about what he wants to do about my port.  If he wants to remove it, that will be scary as it involves a small operation – eeech!  If he wants it to stay, then that means regular flushing, and more importantly, my questioning why he wants the port to stay.

The most important thing for tomorrow though, is that I am relying on him declaring that I am fit to travel to the UK.  I can’t confirm our travel arrangements until I have medical clearance.  If I do get the “all clear” then we will have less than 48 hours to pack and prepare!

I am trying not to think too much about Scary Thursday, and instead to focus on what I hope will be Frantic Friday – packing and getting ready to head to Scotland……….

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.

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!

A grey afternoon in Bangkok

It has been mostly overcast here in Bangkok all day.  In fact, it has been overcast in more ways than one.  The weather has been gloomy and grey and we have had some heavy rain.  The mood feels similar from where we are.  People are staying in as the situation intensifies in the central area where the protests are concentrated.  News reports bring graphic footage and accounts of the violence.  It is hard to see resolution, let alone peaceful or prompt resolution.

We are well away from the affected area and not at risk.  We are receiving regular messages and updates when they are available.  We have cancelled any plans we had this weekend.  We are venturing nowhere except the hospital (which is very near) and also away from the trouble.  We really are safe and sound.

There is talk of a curfew which I personally hope does not materialise.  This is not a new situation for me, so does not cause any anxiety in itself.  The reason I do not welcome it is purely selfish.  I am so near the end of my treatment, my Triathlon from hell, which has lasted nearly 8 months so far.  With only 6 radiation sessions left, I feel that any postponement or delay is akin to the last straw breaking the camel’s back.

It is incredible that the hospital has been able to keep things moving forward up to now, and I really take off my hat to the staff for their commitment and professionalism through all this.  (That is a metaphorical hat – I am far too bald to take off my own hat).  Yet all I can think about is my own treatment and how I don’t want it to be delayed, so near to the end and so near to seeing my family again after so long.  I am not proud of this selfishness amidst what is happening in the city but I cannot deny it is there.  I think a lot can be attributed to the horrible cancer as it seems to place a lens over your eyes.  Everything you see is through the cancer lens and it seems to influence your feelings and decisions too.

There is no confirmation of a curfew and some statements have indicated that there will not be one immediately.  The violence seems to be continuing.  The air is thick with uncertainty.

Let’s hope that peace returns, the grey clouds and mood lift and that this selfish patient can get her final treatments without too much disruption.