In a scary space – the details of the past days

Pre-script/spoiler alert

As promised, here is the detail of this latest twist in the tale.  I particularly wanted to provide the previous short post, to share the news promptly that the investigative tests had been clear.  This is absolutely not intended to bring concern or suspense, but rather to document and probably moreover, process and offload, download and upload the events of this week.  Hence the “spoiler alert”.  There is no bad news in this post.

While I was waiting for the bone scan, I had two hours to wait after the radioactive dye was injected.  I sat down with my laptop and hammered away at the keys, just banging down what was going on in my head.  Looking back, it was just like being in an exam, that sense of purpose and pressure as the words flowed.  The following is what I wrote during that time.  I have tidied rather than edited, so it does come across as rather messy and lurches from big serious thoughts to the utterly trivial.  I did not want to re-work this apart from correcting errors and clarifying aspects which in hindsight might be inaccurate or unclear, because it is a snapshot of where my mind was right at that time, when I did not know.  I have added this pre-script and a post script to situate what I wrote while in that scared space.

I am sitting writing this while the radioactive dye does its preparatory work.  Ironic as I am “dying” to know what the bone scan is going to reveal.  Dying to know that I am not stage 4 and not in a inevitable process which will ultimately lead to my body dying.  And my mind, although not for as long as I can keep my hands on it.

When I am worried, I tend to retreat into myself.  Contradictorily I crave support and reassurance, but something inside me retreats and works through whatever needs to be worked through until there is at best reassurance and relief and at worst clarity on where I’m heading and what options there are.

And that is the space where I find myself right now.  Usually I don’t write about this, either on the blog to the wide (wide blogging anyway) world, but also not really to family, friends or colleagues either.  Since my original diagnosis in 2009 when I told hardly a soul, I have developed a slightly more “let’s not tempt fate” approach to follow up tests and usually share a concern or worry if I have one.

I approached the tests this time with a slight sense of complacency.  And that was thanks to the CT scan I had had in July at the time of the Pulmonary Embolism.  Dr W2 had reviewed that CT scan not just from the perspective of the clot, but also (and particularly I suspect) through his oncologist glasses.  He told me that the CT scan gave no indication that cancer was a factor in the pulmonary embolism and lung/ chest trouble.  What a huge relief that was.

And so this has been not so much in the back, but very much in the forefront of my mind.  If there was no sign of anything worrisome back in July, then surely things have a better chance of being ok through these results.  Surely.

Having the Big Annual Checks so soon after the PE episode added to this complacency for sure, although I would not be me if I was not anxious and worried about the checks.  That is the way I rock and roll.  I am the Worry Queen after all.

The checks had to span two days as the number of specialists (aka superheroes) I see increases with each extra bonus “thanks to freaking cancer” condition I collect as time wears on. So on Monday 8 October I presented myself at my second home, Counter No 2 so that the process could begin.  I had to ensure that the staff knew to take all the blood they needed for all the docs – I have a range of checks including the usual full blood counts, thyroid monitoring, glucose, kidney function, liver function, INR and clottery levels, hormone levels and of course the scary old tumour markers.  To name but a few.  A few phone calls confirmed the final count and several vials (felt like litres) of blood were syphoned off.  (And they seem to be surprised that I am mildly anaemic when I am constantly being bled?)

I then had a couple of hours before seeing Dr M, the latest addition to my A team – my cardiologist, who was enlisted at PE time.  That permitted time to run out and undertake a rapid procurement of a couple of new swimsuits.  All this daily swimming is resulting in perishing swimsuits so replacement was getting urgent.  Before very long I was back at the hospital and waiting for Dr M.

He was happy with my results, and paid particular attention to the  INR result (my blood needs to be in a specific range, knows as the therapeutic range) while I am on warfarin for PE.  The result sat comfortably in the range and he was happy with that and the reasonable stability of results since returning to Yangon.  He was very happy with liver, kidney, thyroid and the other results that he was interested.  He will review how long I will be on warfarin, but we are still talking at least 6 months.

As he turned the page for the final results (which he was also happy with), my seasoned eye sought out the tumour marker results, as I know where they are on the page, and I know the reference ranges by heart. (no pun intended, siting in a cardiologist’s office!)

The CEA was comfortably in range at 3.62, but my eye was caught by the CA marker which has a reference range from 0 – 22.  This one tends to vary a bit, although it did reach 26 once which totally freaked me out, but it tends to be late teens early twenties.  Yesterday the figure of 30.2 screamed out at me. Now of course I am no expert, and much as Captain Paranoia is instantly leaping around me, jabbing his finger at the number and generally “high-fiving” around the room, I knew that his mischief was premature.  I asked Dr M and he said that this was not his area of specialism and that Dr W2 and I should talk about this.

So that was the start of the worry kernel planted in my head.  Dr Google’s advertising campaign sprang into action and for once I ignored it. I don’t want to hear his unreliable scaremongering.  No point in adding to my sleepless night with more scary thoughts.  I know his tricks.  Unfortunately this is one of his super-busy bonus seasons with all the “awareness campaigns” so the fact that has given up on me for the time being is more likely to be an indication of how busy he is rather than a shift in my own mind!

Of course, the tumour marker nagged away at my mind all night and I did not have a good night’s sleep.  I also had my range of tests due in the morning, so was generally cranky and nervous.  I was scheduled for mammo, ultrasound of breast and upper abdomen as well as X-ray.  No CT scan thankfully, as I hate them, really hate them.  Unfortunately the instruction to fast for the ultrasound had not reached me, and I had provided my bloods the day before after fasting so was surprised to learn that I should not have had breakfast.  This prolonged the scanning timetable as I had to return later for the abdominal ultrasound.

Finally, the scans were all done, I was well and truly squished and scanned and waiting nervously outside Dr W2’s room.

Dr W2 is a hero. He was happy with the mammo, X-ray and ultrasound results and said I was looking good.  We talked about the warfarin briefly, and then I asked about the elevated tumour marker.  His words of response were:

“That is a concern I have”.

GULP!

Those are NOT the words I wanted to hear.  I wanted to hear his usual “pah”, with his reassurance that there was nothing to worry about. That is the deal – I worry, and he reassures.

Next was the physical.  This was a bit different.  More checks, different prods, including the lymph node areas.  And different questions.  Have I noticed any unusual pain?  When was I planning to return to Yangon?

I really didn’t like this change to the routine.  Alarm bells were clanging loud and clear.

After the physical I sat back down and he started to go through a plan.  He talked about the Femara switch and if that was working out ok. Then he said he wanted to re-run a CT scan.  Mainly for follow up of the embolism.  Oh the dreaded CT scans, how I hate them.  I had thought with all the scanning and monitoring of the morning that those bits were done. 

Then he hit me with “and I will send you for a bone scan”. 

A bone scan??  What The What is that about? 

I should know better, that if you ask a direct question, especially to Dr W2, you need to be able to handle the direct answer.  I don’t think I was.

Is that to do with the Femara?”  I asked, knowing that Femara is more aggressive in depleting calcium in the bones.

“No” he said.

“No, we need to see if there is any cancer in the bones.  With your type of cancer, metastasis to the bones is more common than in other cancers”.

GULP!

“ Once you have had the scans, then come right back and see me.”

I was utterly stunned.

Appointments were rapidly scheduled, and the CT planned and carried out a couple of hours later.

The bone scan cannot be done in my hospital so I have returned to Wattanoosooth Cancer Centre of Bangkok Hospital where they have the radiology facilities for the city. 

And that is where I am siting right now, after turning up this morning and being seen almost immediately.  The radioactive dye was injected gently into the back of my hand and I have been asked to return in 2 hours for the scan.  This is a living nightmare.

I knew I would need a bit of help with this.  I joke that blogging is my Xanax, but when push comes to shove and I am at my wit’s end with worry and fear, then Xanax is the only thing I can think of that will do the trick.  I had already left the consulting room yesterday, but knew I needed something to lean on so asked Dr W2’s lovely assistant if I could ask Dr W2 for some Xanax.  A strange interaction ensued as she popped her head into his room.  Yes he would give me one Xanax for the scans.  ONE XANAX???????  I need a wheelbarrow full to get me through the next few days I screamed silently.  I’ll give you a strip of ten, he said, seeing my face.  Success.  Plenty to tide me over.

But blogging or writing is still my Xanax and that is why I am sitting here right now, battering away at the keys while the radioactive dye does its work and I wait for the two hours before the scan itself starts.  I think the Xanax is probably doing its work too as I think it has taken the edge of the extreme nervousness about the procedure itself.  It hasn’t taken away the fear, though nor has it prevented my mind rattling all over the place and heading in so many directions.  I know that this scan is specifically to investigate whether or not there is any sign of bone mets.  My mind leaps from the optimism that this will be fine, that there is only one raised marker, no other signs or symptoms.  To the scenario that the cancer has metastised to my bones.  And onwards to the bonus scenario that whether or not I have bone mets, that might perhaps mean that other organs could be affected, which is even more frightening.  Perhaps there is an entirely innocent explanation to the marker.  But deep down, or not so deep down I know that markers are less reliable when report low levels rather than high levels.  A raised marker is less likely to have a benign cause than the reverse.

This takes me right back to the space I was in just over three years ago.  After Dr H had told me that I should have the “asymmetry” investigated in Bangkok.  I remember veering from “I’ll be fine, there’s no history of cancer in our family and it just can’t be” to “if this is cancer, I will not let it take me, I will fight it and win” (oh the naivety) to “this is cancer, there are too many “let’s get worried” boxes that are ticked by my presenting symptoms.  I am afraid, how long do I have?  I could be gone by Christmas”.  Oh this is all so startlingly familiar.

My head is in such a similar space just now.  Part of me is optimistic based purely n the fact that the “only” alert has come in the form of the raised tumour marker.  And hey, it is not THAT raised.  30 is not so high, it is not in the hundreds.  And it has been 26 before and gone back down.  And that was also in October.  Must be something to be with stupid Awarenss Month my friend and I “rationalised”.  Based on no rationale whatsoever.  A bigger part of me is facing the fact that there cannot be many benign reasons for the marker to be raised.  And that is where my mind keeps returning.

The thing that terrifies me, apart from facing acute treatment again, management rather than cure, no end of the treatment this time, is about my future.  I cannot see it being possible to continue working with stage 4 cancer, overseas and in humanitarian and development work.  So what on earth do I do?  We would, in all likelihood have to relocate to the UK, and after 12 years in Asia that would be a massive change, even without the prospect of investigating how to get treatment and care in place.  I would have to set up home again in the UK, and what about all the paperwork and documentation to ensure hubby J could also relocate.

It is all utterly overwhelming. What the on earth are my options, what am I going to do in every sense.

As my mind continues to hurtle in all directions, I try to stay in charge of it.  Undoubtedly this will continue, and intensify until I see Dr W2 again.  At that point I know there are likely to be a few possible scenarios

  • Bone scan is clear.  High fives. Tears.
  • Bone scan shows clear metastasis and we will be looking at diagnostic investigations to identify treatment plan. Get hubby here pronto and speak with family.
  • Bone scan clear but signs of other worrying stuff going on elsewhere in my body.  Needs more investigation.  Biopsy etc. Tensed jaw, questions, trying to remember the answers to the questions which I must not forget to ask.  Get hubby here pronto and speak with family.

How can I tell my family?  What words will I use?  How much should I forewarn them that this bombshell could be coming?  What do I do about the visitors we expect in 3 weeks time? What about all the Big Stuff going on at work, the major project just approved after two years work?  All the changes going on around us?  How can this be happening now? What about my new bike?  Can I ship it to the UK if needed?  How long will I still be able to ride the darn thing? What about my hair?  No point in booking the cut and colour I had planned.  And the birthday thing?  My mother died on her 65th birthday, and my step mother on her 75th.  Am I going to die on my 55th birthday?  How do I tell everyone if the scan results are bad?  When should I start to make a list of those to phone, those to email and start on that dreaded “bad news” blog post…….

If it is in my bones, then I am stage 4, pure and simple.  If I am stage 4 then we are talking treatment and management rather than cure.  Not beatable, but treatable.  And that is the thing.  Treatment of Stage 4 (from the little I know) is about management, finding the option which best delays or slows progression of the disease.  And that treatment just keeps on going as long as it works.  8 cycles of chemo felt like a lifetime back at diagnosis time.  But there would be no more being able to count down towards the end of chemo, this is quite literally chemo or other treatment for life.

Writing this, has helped somewhat to control my mind and organise my thoughts.  I am still overwhelmed and terrified but the two hours has almost passed as I have battered out my thoughts.  Writing and Xanax, working in harmony.

Time’s up. Now it is time, time to enter the scanning bunker and do the tests which will determine my immediate future.

Post script

I found the scan was much easier than a CT.  Perhaps that is in part thanks to the Xanax?  For half an hour I lay, swaddled in a blanket and my arms held in place by my side while the scanner moved around silently and unobtrusively around me.  I probably drifted off.  My mind was nowhere in particular.  I was in a very different zone.  I was a passenger.

After the scan, I was taken back to the changing area, but on the way the technician asked me if I wanted to take the report with me.  If so, could I wait for half an hour.  Of COURSE, I wanted the report.

I replied affirmatively, but emphasised “I will read it if I have it, perhaps my Dr would prefer to go over the results with me?”  However, I knew that I would take the report with me, and read it no matter what it said.  I HAD to know.

I returned to the changing area, which was actually a small bathroom.  I took my clothes from the locker and placed them on the side next to the sink.  As I removed the gown, I heard a brrr, brrr noise, and turned round just in time to see the automomatic soap dispenser beside the sink, happily dispensing soap onto my clothes.  I returned to the waiting area, shaking and with the remnants of liquid soap all over my blouse.

It did not seem like very long at all before the technician returned. I could feel myself struggling to keep it together as she handed me the envelope.

I repeated.  “I am going to read it”.

She said, it’s ok, you can read it and take it to Dr W2”.

Reading the words, seeing the result brought my guard down and I completely crumbled in the waiting area, weeping and clutching my reprieve.

This feels like a huge overreaction, now with the results and the reassurance.  I know that compared with so many I am hugely fortunate.  Not only did I have clear results, although the tumour markers will be monitored more frequently over the coming months, my nightmare was so much shorter than is often the case.  They might have four of the longest days of my life, but it was all done within those four days.  From the initial bloods, seeing four consultants, mammo, ultrasounds, CT scan, and review it took just over four days.  I cannot imagine the anguish that protracted investigations cause and I know I am lucky.

Of course there were no high fives in Dr W2’s office.  I know it doesn’t work like that.  More a sense of numbness, physical exhaustion and utter emotional depletion.

However, one comment on my last blog posting said it all.  “We get it”.  Yes, my results were clear, yes everything was done quickly but look at the emotional and psychological torture we go through to get there.  And there is no point at which we can say that we have absolute relief and reassurance.  Because it is only valid until the next round of tests and checks. Yes, as my blogging  friend said “we get it”.

That is my validation and reassurance of my reaction to this whole experience, and even although it has been over  only four days, it is massive and a Very Big Deal.

Blogging for Mental Health

It is rather late here in Yangon on a Wednesday evening. I am sitting under the fan, the air damp and humid as I am catching up with the rest of the world online.

I pour yet another glass of chilled water from the fridge, squeeze a sliver of lime into it, as I have done since chemo distorted my tastebuds and I found this was the only way I could suffer the dishwater taste. It is a habit I have kept up since then.

I check the twitter feed just one last time before sleeping, and see that there is an “interaction”. Always curious, I click on the icon and see a tweet from Marie of Journeying Beyond Breast Cancer.

Will you join me for #mhblogday?

She asks?

I follow the link and find out about the “Blogging for Mental Health” Challenge.

It may be late here, but this is something I have a view and feelings on. I especially have a view because I believe that there is so much focus on the physical side when we have a cancer diagnosis. Everyone knows that the disease is dangerous, and that the treatments cause all manner of difficult side effects. Everyone expects someone with cancer to look ill and haggard. But the emotional and psychological impact of a cancer diagnosis hits us with the force of a physical blow. We all remember the moment we heard the life changing words. We are caught up in a whirlwind which sweeps us up and we hurtle through treatment. But alongside the physical demands of trying to banish the cancer invader, there is a more sinister and pernicious effect which I have found grows and thrives in the troubled mind that a cancer diagnosis brings.

As the hour is late and the connection painfully slow, I prefer to paste below an earlier discussion about Captain Paranoia. (The links are not working tonight, I can always edit later…) This post sets out the troubled frame of mind which cancer has brought me, and the challenge to emotional and mental well being.

The tone of my post may be light, but the topic itself is not. My fears are real and all I ask is that they are respected and validated.

Thank you, Marie, for prompting late evening thoughts and for highlighting the serious question of mental health.

Captain Paranoia (posted June 2011)

He’s back! I woke up in the night this week and there he was, on my pillow, sitting cross-legged, feeding snippets of paranoia into my mind through my ears!
I felt my stomach clenching, as the fears rose to the surface. I am always quick to feed a worry and Captain P knows this. He was in his element, planting a snippet of suspicion in my mind and watching it gather speed and make me jump.

I overdid the treadmill in the gym a little the other day and have a pain in my heel. I also bumped my shoulder against a van’s wing mirror a few days earlier and have a tender spot on my shoulder. Add to that the combination of dark, scary, night time hours and voila – there is Capt P whispering “bone mets” in my ear.

I know that this is his peak season. I am only 2 weeks away from the next round of checks so this is the most difficult time mentally. I have already heard those “you have cancer” words once. I know it can happen and I know I am at risk.

So who is this Capt Paranoia who is part of this post diagnosis life? Does he warrant a whole posting devoted to him? Yes, I believe he does, so that we can combine forces to send him packing when he tries to come visiting.

I am not able to take the credit for creating Capt Paranoia. I borrowed him from a friend, and have seen him discussed on some of the discussion pages of Breast Cancer Care. I have developed him in my mind though, into a kind of anti-hero. In my mind. he has appalling dress sense, with an orange polyester sweatshirt with “The Captain” on its chest, and bright blue leggings and matching cloak, both of which clash terribly with his sweat shirt. And of course, he has the obligatory underwear over his leggings and his untidy hair smoothed back with Bryl Cream. Not the kind of guy you really want to find sitting on your pillow!

This personification (as insulting as possible) helps me to compartmentalise the fear and try and put it in its place. In a corner. Preferably the “Naughty Corner”
I have been developing ways of minimising Captain Paranoia’s activities. My favourite is to play memory games in the middle of the night when I cannot sleep and worry comes my way. Perhaps they are senility games. I save up little puzzles, especially little exercises of trying to remember certain things from my past which I can’t quite bring to mind. For example, the surname of a colleague from 20 years ago, the name of the band who sang a particular song in the 70s, features of a town I have visited many years ago……… I love this kind of puzzles and they are not new to me. When I find that some detail is evading me, I love to ponder and puzzle over it until finally I retrieve it from the very dusty shelves in my memory bank. Occasionally a detail may elude me for weeks, as was the case a couple of years ago. I had been trying to remember the surname of a colleague I had worked with in the 80s and search as I might I just could not remember it. Incredibly, when I was back in Scotland several weeks later, I bumped into him in Glasgow’s very busy Queen Street Station on the only day that I passed through Glasgow! Happily I was able to solve that puzzle with his assistance because I have a feeling that it was not going to come back to me ever without some help. I recently had another puzzle which kept me going for ages. There was a tune which I just could not identify, and try as I might to hum it and retrieve the lyrics for a clue, I could not get more than a few disjointed and unclear words. This one lasted for months and was finally solved when I was last in Thailand. I don’t have a mobile phone here, but I do in Thailand and when trying to change the ring tone, I suddenly realised that the evasive tune was the ring tone on my previous phone! No wonder I could not find the lyrics.

Happily when you get to my age, there are plenty of little details like this that you can’t quite retrieve. So there is plenty of material for me to use in the dark hours when Capt Paranoia is trying to elbow his way into my head. That is why I was lying awake in the early hours this morning, mumbling tunelessly that old number “tie a yellow ribbon round the old oak tree”, amazed that I seemed to remember all the lyrics (a dangerous confession I know) and trying to remember who on earth sang it! It defeated Captain P and I eventually dozed off again with the lyrics going round and round in my head, trying to pin down the name of the band which was responsible for making it so popular so many years ago.

I have realised that this is a good strategy which I can use against Capt P from now on. I will make sure I have a stock of these puzzles. Luckily that is not a problem thanks to chemobrain’s support in fuddling the memory chips. And I will make a conscious effort to search and solve these in a way of distracting my mind from the mean stuff that he is providing. This is a tactic which I think will help in what is going to be a long relationship and tussle between myself and Capt P. I know that this will be a protracted connection thanks to this ever present fear that the cancer beast will launch a comeback. I also know that it won’t always work.

This is not the same as denial, and vigilance is critical. I know that I have to remain proactive and seriously check anything which is worrying as opposed to worrying about something which is easily explainable, or quickly disappears.

The thing is though, I have to be right EVERY time. Capt Paranoia only needs to be right once. And that is his trump card. That is why he is able to keep reasserting his presence on my pillow.

On the positive side? Going over and over “Tie a yellow ribbon” in my head kept producing a cryptic repetition of “Dawn”. Unconvinced, I googled the song in the light of day and guess what? (I am sure you know this already). We have to thank Tony Orlando and Dawn for bringing us this classic. Now while I am sorry that Tony was far from surfacing in my mind, I was quite delighted that Dawn made itself appear in my mind before the dawn itself did. Now is that a victory against senility, memory loss and Captain Paranoia? I think it just might be!

Fast track to de-portation

Yesterday marked two years ago to the day that I had my 8th and I very much hope, my last chemo.  I remember the day clearly.  I had been anticipating it for so long expecting a sense of elation and celebration when the 8th cycle was done. Instead I remember being overwhelmed and crumbling in a soggy heap when the needle came out.  So it was by a strange coincidence that I was again in the oncology suite on 4 April, and again being prepped for needle insertion.  But this was very different.  There was no chemo ordered, and I was in the midst of 2 days of appointments for my regular check ups.  In a gap between appointments, I slathered my Emla cream on the port area and headed to Floor 5 to have my port flushed.  It was before my appointment with Dr W2, but I was not expecting any huge surprises as I had already seen the results of the bloodwork and seen Dr W (my breast surgeon), my radiotherapy consultant and endocrinologist.  They had written the magic “no recurrence” words (on my file and Dr W felt there was nothing worrying in the pain I had had in December.  However, I know Dr W2 looks at things through his oncology eyes, and I was still nervous about my appointment with him.

The port flushing went smoothly and happily there was a good blood return.  Before long I was “flushed” and heading out of the suite towards my appointment with Dr W2.  I had to wait a bit as he was held up in arriving at the hospital.  As always, I heard him before I saw him, and to my surprise I was ushered in a few minutes after he arrived.

He asked the usual questions and I had my list of questions for him too.  He always expresses interest in what is going on back home in Yangon and with the recent events I was fully expecting his questions on this too.  He did the usual examination and to my surprise announced that perhaps the port should come out!  What?  I have been wishing the port out for 2 years and willing him to say that he felt I would never need it again (yes, yes completely wishful thinking).  My response was to ask if it was no longer needed.  I was completely unprepared for his reply.  “I don’t like the look of your veins on this arm”.  He said.  They are much more pronounced than usual.  I don’t like it”.

My bubble was instantly burst and my worry head swung straight into action.  He was concerned there could be a clot forming and even though the port was working fine, it should come out if there was a risk of clotting.  I asked him what that would entail, knowing that surgery or some sort was inevitable, yet illogically wishing for magical port disappearance.  He told me that the surgeon who had inserted the port would be the one to remove it and he phoned him.  Then and there, right in front of me!  I asked the two key questions I had had and he replied quickly to these, meaning no change in meds or ongoing treatment.  He then set me up with an appointment for Dr P, the (appropriately initialled) port surgeon.  And then I was back in the waiting room somewhat shell-shocked, explaining the unexpected turn of events to my friend.  And still waiting for his questions about Yangon!

Dr P was operating all afternoon and his schedule was full but he could fit me in the following morning!  I was ushered through the paperwork side of things and asked to return at 9.15 in the morning.  I had a growing list of questions which were difficult for the nursing staff to answer.  I called on the help of our liaison manager and she talked through all of my questions with Dr P.  Along with the questions such as “when would the surgery take place?, “would it be safe/wise to travel a day after the surgery.  To India?”, “would the stitches be dissolvable or need to be removed?”, there was a question sneakily hidden in the midst of the other ones – “can I keep the port once it is removed?”  I seriously wanted to see this device, which I had hosted for 2.5 years and never actually seen except as a shadowy form on an x-ray.  I most definitely wanted to keep it!

My questions answered, I headed off finally, knowing I was to fast again (the second time in 3 days), to return for a consultation with Dr P at 9.15 with the likelihood of surgery under local anaesthetic at 11 am.  Now I am the biggest wimp on the planet when it comes to surgery and I begged for a “happy pill” to get me through this.  This was obliging agreed to and I was prescribed ONE Xanax tablet to take that night before sleeping!

I spent the evening updating family and slept fairly early in preparation for the scary stuff in the morning.  Thanks I am sure, to the Xanax I slept fairly well and rose early with increasing anxiety.  I packed most of my belongings away and took out a few essentials to take in with me, unsure exactly what I would do with my purse and credit card while under the knife.

My plan was to buy a book before my appointment with Dr P, but that was thwarted by the bookshop being closed until 9 am and I was at counter 5 long before then!  I was ushered very quickly into Dr P’s consulting room and he agreed that the port should come out.  Gulp.  It was really going to happen.  He looked at his schedule and said that he would see if he could do it right away to save me waiting until 11 am!  I asked for some happy pills and told him I was very nervous.  He asked me if I had anyone with me and when I said that I was on my own, he said that I should try meditation!  It would not be safe to send me off on my own after the procedure if I was unclear what planet I was on!  I then produced my Emla and asked if that would help as preparation.  He laughed and said that it would do no harm!  I then repeated my request to keep the port and again he laughed, amused by my curiosity about it.

I was then taken back to the waiting room, and signed the necessary papers.  the nurse told me that the surgery would be at 11 am and I could go and have a light breakfast if I wanted to.  I decided not to as it would be too much like tempting fate.  No food = no need for general anaesthetic!  I headed straight to the bookshop and somehow one book turned into four and I wandered up to the easy chairs to read while waiting for the clock to reach 10.30 which was my reporting time.  Within 10 minutes my mobile phone rang.  The time had been changed and could I come straight back to Counter 5 and be taken to theatre! GULP!

I did my obedient puppy act and went to counter 5, and was led up to the 2nd floor to the Theatre suite.  After depositing my essentials and the four new books in the safe, I was met at the door by a gowned nurse who exchanged my shoes for a pair of theatre shoes which I could have gone sailing in.  then I was given a gown and theatre cap and had to change ready for the surgery.

This was the first time I had walked into the OT – every other time I was wheeled in, partially sedated and lying flat on my back without my glasses so this was a very different and far too clear view for my liking.  I climbed onto the operating table and the staff started prepping me.  My blood pressure was very high, unsurprisingly as I had absolutely no sedation or synthetic happiness.  Within about ten minutes Dr P arrived and the serious stuff began.  A small frame was placed over my head and a green gauze sheet over it so I was suddenly housed in a green world as the work began.  After the local anaesthetic was injected, the incision was made, but I continued to feel pain until a few more doses had been administered.  This is something I have experienced before – the need to have higher doses of local anaesthetic.  Dr P responded immediately when I said I could feel pain and he administered more anaesthetic.  The procedure took a good bit longer than I expected, because my port had been placed quite deep.  Finally it would out though and I felt (and heard) Dr P cauterising the area to stop bleeding.  Rather alarmingly, I first heard this as “stop breathing”, which scared me until I realised it was his Thai pronunciation!  He then removed scarring and finally I could feel the area being closed and stitched.  The whole procedure had taken around 45 minutes, excluding the prep time.  I was SO glad it was over.

The green gauze sheet was removed, and Dr P’s smiling eyes appeared above his surgical mask.  He was waving the port at me and was highly amused when I greeted it with a cheery “hello!”.  This was bizarrely reminiscent of giving birth and being introduced to your new baby!!

I handed my spectacles, my nose stud, and my amazing port and ushered out of the OT and back to the changing area and recovery area.  It was OUT, I had finally been de-ported and could already feel it easier to move my neck.  The Frankenstein button on my neck has gone and I no longer have this weird foreign body in my chest.  I certainly made life so much easier for me but for now at least it’s work is done and it is not helpful to keep on hosting it.

The anaesthetic is now wearing off and bruising appearing but that is all part of the healing process. Ironically though, this has resulted in a change of plans but not for the reasons feared.  I actually had gone ahead and booked my ticket to India for Friday (6th April) but with a fresh surgical wound, heavy baggage, a complicated journey and hot weather and dust of dry season it would not be wise to travel to India.  but that is a whole other story, for another day!  I will take a few days to regroup and recover a bit from the hectic first months of the year and my de-portation.

In the light of day

After  the grey day we had yesterday, dominated by the outer tendrils of Tropical Storm Nesat, spilling its endless rains throughout the night and the whole day, the last thing I needed was a sleepless night.  But there I was, checking my watch at 3 am, 3.20 am, 4 am and right through until the last check I remember, when it was approaching 5.25 when I finally fell asleep.  Our Twitter BCSM discussion this week was about cancer anxiety, and how it affected us.  I didn’t need to be reminded in the dark hours of the night.

I was startled by the jarring sound of my alarm at 5.50, rudely shattering the sleep which had finally descended. I always struggle to get out of bed, even with the prospect of a sunrise swim, and even after a decent sleep.  The last thing I wanted to do this morning was to leave my cosy bed and head out for my swim.  It took a good few precious minutes to drag myself out of bed and look out of the window.  Yesterday the rain had been torrential and I had been forced to forgo my early swim.  Oh, for a rainstorm and an excuse to go back to sleep today!  The sky was preparing for daybreak, but through the distance I could see a change in colour on the horizon.  A pinkish, orange glow.  That could only mean one thing.  That the clouds had thinned enough to promise a sunrise.    So nothing to sabotage today’s swim.

I must have groaned as hubby stirred in his sleep.  “You’re really tired.  Don’t go for your swim today” he grumbled.  “I have to” was my response,  “I have to”.  I love my morning swim, I know it makes my day, but I also know that one of the strongest motivating factors is the knowledge that women who exercise regularly, statistically have less recurrence, according to studies I have read.  So I have to swim.

I moved into automatic mode and put on my swimsuit and casuals, gathered my work clothes and put them into the small rucksack lying waiting for its daily outing and headed out.

The sky was still angry in places, matted clumps of cloud strewn across the sky marking Nesat’s reach.  I walked through the little lane past three girls sitting, beside their basins of fresh fish, chickens and shrimps on their way to the market.  They stop there most days, resting and chatting before they pick up the basins, put them on their heads and move on towards the market.  They giggled, as they always do, when I pointed to each basin and attempted to say the words for fish and chicken in Myanmar language.  As always, they gestured to my watch and I gave them my daily attempt to tell them the time.

The school yard I pass through had rivulets in the sandy ground from the torrential rains.  I passed the Mohinga stall, huge aluminum pots steaming and the smell of fishy stock meeting my nostrils.  Its popularity evident from the number of new, flashy cars parked outside.

As I approached the pool a few drops of rain fell.  It was too late to turn back though, and the sky was giving no clues as to whether this was the start of another downpour or just a passing threat.

As soon as I hit the water, I’m awake!  The pool was cool, cooler than usual having missed the sunshine the day before.  Before long I am breathing more deeply, soothed by the sound of the water as I move through its mass, and I feel my mental greyness lifting.  There are only three of us in the pool, each in our own space, physically and mentally.

As I plough up and down the length of the pool, I am glad that Twang Arm prevents me from being able to swim a proper front crawl.  Instead I swim with my head above the water, my usual steady breast stroke which enables me to take in the sounds and colours around me.  The sun has already risen, as I can see from a bright area behind the clouds, low in the sky.

Then something shifts.  The walls of the surrounding building turn pink, shadows of large palm tress appear and everything brightens.  As I turn to swim northwards again, I see that the sun is peeping out over one of Nesat’s tendrils, casting brilliant sunlight and immediately illuminating the world.

My own world has suddenly transformed a different and brighter place.

A sinister business partnership? Or a conspiracy?

As I settle back into the swing of things, I know that not far on the horizon is my next round of checks.  For now though, I am still in an upbeat frame of mind following my break and the appointments are far enough ahead not to feel imminent.  So that means that Captain Paranoia is also on a bit of a break.  Although he may not be lurking on my shoulder at the moment, I know he is causing his mischief in many other lives.

With this slight distance I am feeling more rational than can happen at other times regarding the future.  A clear indicator is a glimpse at my web browsing history.  It is immediately obvious that I have not consulted Dr Google for a while.  In fact, not since Dr W laughed at the wirple, back in early July.

This is when I spot a rather interesting connection.  There appears to be some kind of business relationship between Dr Google and Captain P.  A rather sinister one at that.  And they both appear to benefit and feed on each other in this arrangement.

Does it sound familiar?  At the first sign of an ache or pain, appearance of a strange shape or bumpy area, development of a rash or spot, Capt P appears and starts whispering (or shouting) that Houston, we have a problem.  And what do we do?  Too often we run straight to Dr Google who is waiting, grinning malevolently in his 24/7 online consulting room with far too much information, much of it ill organised and not necessarily current.  He overwhelms us with graphic images and what appears to be terrifying confirmation of our worst fears.  Our minds freeze with another round of fears and worries.

We eventually log off.  Sleep is elusive, as the information from Dr Google churns around in our minds.  Capt P takes over another shift and cranks up his efforts to maintain a wearing and ongoing onslaught on our thoughts.

In this welcome space of clarity which I find myself in just now, it is abundantly clear that if Dr Google’s online Diagnostic Service was unavailable, then Capt P would not have such a great hold over us.  Similarly, if Capt P could be kept at bay, we would not be so compelled to consult Dr Google.  The challenge is then how to try and break this cast iron partnership and weaken the power which they wield over us.

In my view, having this knowledge is in itself power.

This week’s Twitter discussion focused on Post Treatment depression and there was a very lively and open sharing of the emotional fragility we have following a cancer diagnosis.  My own view is that while depression is very much a reality for many people post diagnosis, I feel that one thing we all have in common is what I would call a post diagnosis “frame of mind”.  This reflects the fact that we live life differently after diagnosis and we are generally very vulnerable to fear and anxiety.  We are far more prone to worry about our future.  The checks and regular monitoring are massively reassuring – but only if they show nothing worrisome.

This frame of mind is a fertile ground for the sinister partnership of Dr G and the Captain.

We do have tools at our disposal to stand up to the evil duo however.  In particular, we have each other in the online breast cancer community.  We understand each other and respect the harrowing worries that we encounter.  Many a time have I had my hand held across the divide.  We also have a number of reliable sources of internet information and we should ensure that we do not consult Dr Google indiscriminately.  We should turn up at the virtual waiting rooms where we know our consultation will be fair and credible, such as the Breast Cancer sites and not that terrifying Google images search engine!

So what do we have then?  We have an evil duo who are in all likelihood working in cahoots – Dr Google and Captain Paranoia.  They are supported by an arsenal of information and detail which we cannot begin to interpret without a very smart medical head.  To counteract this we have a wide reaching and sensitive community who “get it”, and understand our fears and anxieties.  We also have our “real life” Doctors – our oncologists and our surgeons for example.  They not only know their stuff, they know us, and mostly can guide us through the minefield of distressing and baffling details dropped in front of us.  We usually only see them at our checks and they are subjected to the collection of questions which we have been saving up in anticipation of our reunion with them.  Often we are waylaid by unexpected blood results of other questions and realise in the days following our appointment that we still have unanswered questions.  And Capt P just loves to latch on to these questions and twist them around in our minds.  He refers us directly to Dr Google……..

We need to try and break this cycle, fed by the Capt P and Dr G alliance.  I know that is far easier said than done.  Dr Google is far too accessible and Capt P ensures that his visitations are as distant as possible from our real life support.  We must therefore make a concerted effort to resist Dr Google.  Capt P will then be weakened in his efforts to derail our thinking.  We have helpful guidelines, such as the 2 week rule (if a pain, ache or suspicious bump lasts for 2 weeks it needs to be taken to a Doctor).  We have our online support.  Oh, did I already mention that?  I guess that out of the sinister partnership, Capt P could possibly be credited with having a modicum of use.  He keeps us alert.  It is critical for us to be aware of our bodies and any changes that could be significant.  But to go any further than that sees him as a trouble maker who needs to be kept in his place.

I hope that this exposure of this intimidating duo can prompt us to do one thing.  To enable us to take firm control of our situations and enable us to strike a balance of being vigilant, sensitive and proactive without being obsessive.

Knowledge is indeed power.  So listen here Dr Google and Captain P – you guys are  RUMBLED!!!

The birthday present

I’m afraid it is time for another small confession.

One of the prompts for my visit to Cambodia was to continue a strange practice which started on my trans-siberian epic journey 12 years ago.  Wait a minute, how many years ago?  Impossible!  Well, however many years ago it was, it sparked the practice of spending my birthdays in Asia.  Over the past 12 years I have spent my birthdays in Nepal (several), Thailand, Mongolia, India, Sri Lanka, Myanmar and of course the one where it started – China.  I have a strange pull to spend the day in a different Asian country each year if possible.  Hence the Cambodia visit.

When I revisit my thoughts from this time last year, I realise how far I really have come.  Last year I spent a quiet and reflective day, and I can see just how much I was still wrapped up in a cancery space emotionally and physically.  I had only just started going “topless” a couple of weeks previously, braving my scalp stubble to the world, and was still suffering from the later stages of shingles.

For the first time since starting to blog, I am going to do something really radical just to highlight how far I have come indeed……..

This is a photo.  Of me.  Last year.  On my birthday.

I am becoming less precious about being anonymous, and while I do not like photos of myself (especially the ones where I have “cancer” stamped clearly on my forehead), I do feel more able to come out from behind my protective barrier.  And one big reason is that I feel able to share a picture from my birthday this year, here in Cambodia.

My day was firmly about living in the present.  None of know what is ahead and with the cancer lens in front of our eyes, fear and anxiety are never far away.  So I grasped the mettle and decided to do something I have long wanted to do and not think of the distant future and what might or might not happen.  I booked myself an “off the beaten track” trip for the day and despite torrential monsoon rain, I had an incredible day, slithering around villages and clambering over temples like an aging, bespectacled female Indiana Jones!

I still have my anxieties, and I still fear the return of cancer.  I know that won’t change and will intensify and fluctuate with scares and checks.  But for today I have discovered that I can live in the immediate, here-and-now present.  And that is the best birthday present possible.

A lottery indeed

I had the most bizarre, disturbing and frightening dream the other night.  It does not take a degree in dream analysis to see where a lot of it was coming from, but it does show what a combination of worries does to the creative mind!

It all started with a lottery ticket.  Some one bought me a lottery ticket – a very generous gesture.  However, this lottery was one with a twist.  If your numbers came up then of course you won a large sum of money.  But if an alternative set of numbers came up on your ticket there was a really sinister outcome.  You were sentenced to death.  Seriously – what kind of mind dreams up a lottery like that?  Well, in my horrible dream, my bad numbers came up.  I went through a horrible phase of preparing for the sentence to be carried out and remember the distress I felt. I had an overwhelming feeling of not being ready to say goodbye.

The day of reckoning was upon me in no time (well this is dream land) and I next found myself in a cell.  With interesting company.  Gaddafi no less!!!  It seemed we were due the same fate – a euthanasia pill of some sort.  We were given a briefing and I was told that once I took the pill I would not feel anything for the first 3 minutes.  Then I would feel very nauseous, but you will not be sick and that would pass and then I would be gone. (This has echoes of the CT scan advice – “you will feel hot all over your body for a few minutes, and feel as if you will relieve your bladder, but you will not and it will quickly pass”.)

Luckily, before all that happened I received word that I had been given a kind of pardon.  The only proviso was that I had to undergo a swimming challenge.  Next thing I was in the pool, fully clad ploughing up and down and getting myself out of that very nasty fix.  Before long I was being washed over by large waves and then the pool water drew back and the pool emptied.  I had met the challenge though and was able to climb out of the pool and back to life.

I woke up in a cold sweat, trembling and with my heart racing.  Alarmed by the vividness and extreme nature of the dream, but so relieved to be in my own bed!  Unsurprisingly, a sense of discomfort accompanied me for the day, although this was eased somewhat by relating the details to a rather bemused friend.

It does not take any deep analysis to see the number of things going on my mind, and they are not even buried very far in the subconscious.   For me the most significant message was the way I was given this dreadful unwanted lottery ticket, in the same way as I was given the cancer lottery ticket and the way it confronts you with your mortality, and the fact that the lottery results are so much broader and more optimistic than the initial scenario.  The fact that I was able to rise to the swimming challenge also shows how much my mind acknowledges that I am pushing myself so hard because it improves my chances.  Oh, I love swimming and I really enjoy it, but if I am honest I have to confess that I am most definitely spurred on by the knowledge that exercise is a factor in reducing the probability of recurrence.

I may have no control over the cancer lottery, or over my strange dreams but I hold on to the small things that I do have control over – my continued efforts to stay as fit and healthy as I can and do my best to increase my odds to keep the beast at bay!