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.

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29 thoughts on “In a scary space – the details of the past days

    • Aw thanks AM – but you were holding me up, I knew you were there, and you couldn’t have known it was happening as I kept silent on this until I had the clarity. I am just worn out with this, I hope this fades as time wears on but I suspect it won’t. Thanks for the support and the love :) xx

  1. I’m really, really happy you got good results! Yes, it is a Big Deal. Although I became metastatic quickly after my initial treatment, I still face scanxiety every three months (or more) so I know how difficult it is. There isn’t much emotional difference between waiting to find out if you have Stage IV to finding out your Stage IV cancer has progressed. All of us feel that anxiety and it’s always a Big Deal.

    Just so you know, since you said you didn’t know much about treatment for Stage IV, tumor markers are useless for many of us. They rise and fall with the seas and it has no bearing on what is going on in our bodies. My doctor still takes them but I don’t know why, there is nothing that happens to me that relates to the TM. Lots of women become NED and their markers are high, or have progression with low markers. So, try not to worry about them unless they have proven to be an early warning signal for you. Seems like since they rose and you are clean – they may not be of any value. I think they are just a way to freak woman out. :)

    Again, my best to you and thank you for spoiling the post. I would have hated to have held my breath that long!

    • Thanks A – I understand that, it is a very similar anxiety that the scans and tests bring when checking for progression. Added to that, even if we have reassurance, that is always shortlived as we need to face the next round of checks and scans and go through it all again.

      Thanks for your words about the tumour markers too – it is helpful to know that and the thought that they have been designed to make us freak out really made me laugh – it is SO true! :) I will have a review in 3 months this time, instead of 6 – I guess that will be a seasonal New Year pantomime ;)

      Thanks for your kind words and I send you my warmest wishes and support, I follow how you are doing and keep up with your blog regularly even if I don’t comment as often as I would like (connectivity here makes it difficult).
      Hugs to you x

  2. I’m so glad to hear of your results, but reading through your description of the anxiety and emotional stress of hearing the initial tumor marker news, going through tests, waiting for results – I was hanging on to every word, despite your disclaimer that there was no bad news in this post! Sending you a huge virtual hug and hope you get back to your daily swimming soon!

    • Thank you Dr Attai – I really appreciate your support. I was back at work this morniing and started my day with the usual routine of cycling to the pool, half mile swim and cycle home for breakfast. Wonderful :)

  3. i am so sorry this has been a crazy busy month for me, so i hadn’t been aware you were having this tough time… so happy to hear that things are ok..but sorry you have been through such a stressful time. It is good that you can write about it.. i know it will make a difference to others to know that they are not alone in facing these fears after cancer. Love Marie x

    • It was all pretty quick, Marie – plus I did my usual “disappearing act” when I was worried so please don’t apologise :)

      It was strange, almost spontaneous, the way I decided to just pour out all m;y thoughts while I was waiting. It is quite difficult to re-read, but as you say I feel it is so important that we don’t feel that we are alone, and that it is a natural reaction to investigations after hearing the “you have cancer” words, no matter how long ago.
      Love and hugs to you xox

  4. Philippa,
    I get it. Boy, do I get it. I’ve had an elevated marker as well for a while now, so I appreciated reading Ann’s comments and relate to what you’ve been going through. I’ve had two bone scans. So far, so good. I am very grateful everything turned out okay for you. I’m sorry about all your stress. I think we are all “worry queens” more often than we care to admit. Big hugs!

    • Thanks Nancy – this is one of the hardest things for those around us, why we get so upset and nervous. I am also very glad that your scans are also clear, and Ann’s comments are reassuring :)

      Now, I have an image of the Worry Queen, Captain Paranoia and Dr Google all in the same room!!! How worrying is that?!
      Hugs to you too xox

    • Thank you, Kathleen. I think you are right, I do think this is a form of PTSD. The way we are transported right back into the intensity of diagnosis and worry time. Yes, I am happy to breathe out for now, and hope that the markers behave when they are checked again in January :) x

  5. Lots of love and lots of hugs your way, P.

    I feel grateful knowing that your results showed all the necessary uptake; yet waiting for the answers, the not-knowing must’ve been incredibly hard. It’s all just not fair, is it?

    We all need our own xanax, don’t we. We’re all lucky that writing is yours. And that you share it.
    <3

    • Thanks so much for the support and love :) Am so thankful for this set of results but I do know that results and tests are so dependent on the individual.

      Writing AND xanax were a great combo for this – only for use on special occasions though ;)

      See you soon I hope?
      P
      x

  6. We completely get it. I’ve had three of those scary bones scans since I was first diagnosed with breast cancer. All were clear. But the anguish I felt each time is just as you described it. I don’t know how I was even able to lie on the table for as long as the scans took. I’m so glad your results turned out clear. But we do get it. For sure. xox

    • It is a sort of paralysing fear, isn’t it? I think, looking back, that writing, pouring out all the thoughts really kind of “emptied” my mind for the scan itself. I felt utterly drained afterwards, physically and emotionally.

      The “get it” club is such a vital support, I feel so much less isolated and alone and that this anxiety is valid.

      Big hugs to you and continued good health. xoxoxox

  7. Hi Philippa, a scary place is right. I’m so happy things turned out well, but I know exactly how you feel. The slightest thing can set off our worry and anxiety and a raised marker is scary even though yours sounds pretty low. Mine is consistently higher than yours, but has basically stayed in the same range for three years, so my Onc says that’s normal for me. He does go by a graph, not a single result. Hope he’s right! But, if I worry about it every two minutes, I’ll go crazy. Anyway, hugs to you FBG. I’m glad you’re back on the bike and in the pool. You’re an inspiration. xoxo

    • It’s so good to hear your thoughts S, and for “getting it” too. Yes, my surgeon said exactly the same – he would be looking for a trend. Markers behave differently for different folks and as you say, your markers are consistent, so I think he’s right ;) You are right, about taking control and keeping the mind from fixing on it.

      I luurve the bike and the pool – even if it does mean getting up at silly o clock before work, but it is soooo worth it. I have a half written blog post from one of this week’s swims! That was inspiration! Love and hugs to you my friend xoxox

  8. Hi Philippa. A Very Big Deal indeed. While it must be hard for you to re-read, I think it was great to publish these reflections – so many people (sadly) will be able to identify with your experiences and emotions. Most relieved and happy to read your ‘spoiler’ (a good idea!), and it’s fantastic to hear that you’re riding to the pool – you are encouraging me to do the same (though the pool is far more appealing than the bike at this time of year in these parts!). Sending a big cheer and cyber-wave from Darwin…xxx

    • Thank you so much for your comment and your continuing validation. It is a weird re-read indeed! I really had this sense of urgency that I should capture exactly where my mind was, as it is a very tight space, that awful not knowing, waiting space and it is hard to describe it when you have moved out of it whatever direction that is toward. That is also why I wanted to have a “spoiler” as I did not want to come across as “melodramatic” or kind of attention seeking. I just wanted to share what it is really, really like.

      Thanks for your words about the pool and my lovely bike :) I got a little computer thingy which tells me how far I cycle, how long it takes and how many gazillion miles I am from the moon ;) This morning I cycled just under 4 k which is not a lot, but it is a deal better than nothing :) And oh how the pool is wonderful just now, in this end of rainy season which sees hot days before the cooler weeks ahead. Just glorious. I hear you about the pool appealing more than the bike – I find it much harder to cycle back as even by 7 am it is getting a bit hot.

      Big hugs and cyber waves to you too xoxox

  9. i just read through your blog for the first time. oh, my, what you have been through – to hell and back in FOUR DAYS!!! what you have written, what spilled out from your racing heart and worried gut is a perfect storm, one that you have described so well, and that resonates so loud and clear with all of us who live from one breast cancer check up to the next; and one that is nearly impossible for most people we are close TO GET. diagnosed in december of 2012 with ST IV metastatic bc, with nine months of treatment, i am now deemed N.E.D. i celebrate that triumph every day, but know it can be gone in the blink of an eye. but i feel privledged to pay witness to what went on in your heart, mind and soul, and to offer you my ongoing support as a fearless friend. it is, indeed, a “stange space, and few know it”. i am so glad you’re outta there! do all you can to be good to yourself, and know you are doing worlds of good sharing your story with no holding back.

    big, warm hugs to you,

    karen, TC

    • Karen, what a heartfelt comment, thank you.It is such a kind of divide, if you live with this precarious cohabitation with NED then we all get it. And yet it is so hard for those who don’t , to understand and that is hard for them and hard for us too.

      I’m very glad you are with NED right now and wish you a long and settled time together! And I am very happy to be a fearless (well a bit scared sometimes ;) ) friend.

      Big hugs to you, and keep well :)
      Philippa xox

  10. Pingback: In praise of my fish pickling flair | Feisty Blue Gecko – a tail of the unexpected

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