It’s all in your mind

Written on Wednesday 8 October, Airport Departure Lounge, Minglardon International Airport, Yangon.  Travelling to Suvarnibhumi Airport, Bangkok.  Silently willing the upcoming monitoring oncology tests to be reassuring.

“It’ll be fine. Trust me. I know.”

Words of intended reassurance, which make me crumple. I’m sorry but actually you don’t know. I don’t know either. Yes, I know that seems odd, how can I not know what is going on inside my own body. Yet the truth is, I don’t know. Nor do the doctors until they carry out their routine, or not routine, tests. Only then will we know if it is fine or not.

The reality is that not only do we not know if it is “fine” or not (do I get a prize for the highest number of negatives in a sentence?), but we do not have control over whether it is fine or not by our attitude. I can neither keep cancer at bay by a jolly positive attitude, nor entice it by fear and anxiety. My attitude plays a part in how I live through cancer, not how the experience will play out.

The other reality is that no matter how we try to keep our conscious thoughts in rein, the subconscious can play very clever games.

This morning, I was sitting on my travel bag, trying to persuade the edges of the zip to meet before snapping the padlock shut, picking up my passport and ticket, and checking that I have my bank cards for the umpteenth time since breakfast. I had a last quick peek at the world before I disappeared offline for a few hours and was stopped in my tracks by a Facebook status update from Liz of Paw Paw Salad, one of my online BC blogging friends. She is also facing her checks (next week) and has been making Very Deliberate Efforts to Not Think About Checks. However, her subconscious had kicked in and she described a dream which could have been one of my own. She had been at the hospital in her dream ………..

The next review by my breast cancer team is coming up very soon, and I am determinedly Not Thinking About It – but my subconscious hasn’t got the memo. Had a dream last night where I was at a huge, mysterious hospital at which my (lovely, distinguished) oncologist was only going to be available to see patients for one day. I knew he was worried about me – I just didn’t know why. I then proceeded to: (a) meet with friends off the premises while waiting for my appointment, letting time stretch on until I realised it was getting dark and I was hopelessly late; (b) have a gazillion action movie adventures trying to run back to the hospital with various walls, ladders, and other impediments in my path; (c) bump into said oncologist in the corridor where he was speaking with some eminent colleagues and make a Wiggle joke about the skivvie he was wearing, thus imperilling his willingness to speak with me (!!!), and (d) realise I’d left my handbag and sandals (!) in a distant ward of the labyrinthine hospital and that I simply had to find them before my appointment. I woke without ever seeing the Prof, and feeling more wrung out than when I went to bed. Good grief.

I know these anxiety dreams so well. There is a pattern to mine and they are particularly creative around the time of upcoming checks and also before (particularly long haul) flights. Travelling to Bangkok for checks combines two anxieties for exponential bonus effect. Not difficult to interpret! Mine are not set so often in hospitals, but in airports, and also in places where I am trying to pack and depart for the airport. But all of them are labyrinthine! My checks always begin with a flight. I am writing this in the departure lounge right now. Attempting to take control, and manage those thoughts. A vain hope, but worth an attempt.

In another situation or context these dreams would be amusing and they are most definitely creative. I dream that I am packing but the case is filled with all of the wrong things – other peoples’ clothes, papers, even food shopping from the supermarket! And I am unable to find my own belongings. Or passport. Or I don’t know the time of the flight and I can’t find my ticket to check, so I do not know what time to leave for the airport. Or I just can’t quite work it out. I start from the time of the flight and subtract the necessary time to check in in advance, then take away the travel time plus a margin for traffic and delays.  And I have forgotten what time the flight was and have to start over.  And over. And over….  Once I even dreamed that I had to accompany a close friend to the dentist on the way to the airport. I became extremely agitated while she was having treatment because I should have checked in ages before and the departure time was approaching! Oh and then the airport. So many corridors, stairways and procedures to get through before check-in. I have had to climb escalators which had no solid ground at the top. I have had to sit at a coffee bar drinking coffee I don’t like, sipping slowly as it is far too hot, while the check in desk is closing within my sight. In that dream, I was not allowed to proceed to check in until my coffee had been consumed and paid for. I have had to walk miles along carpeted corridors to get to another terminal building which is not signposted and impossible to find. And the other night I dreamed I was on a Qatar Airways flight (how specific is that?) and takeoff was aborted. For some reason, I had to get out of the plane on the runway and walk back to the departure lounge. No one else did, just me. Have you ever realised how long a runway is? This one was like a dual carriage way and miles away from the airport building. Each time I wake up exhausted, stressed-yet-relieved and there is a tiny part of me which is quite impressed at the nonsense I can manufacture!

I have eventually realised that in fact, the airport in my dreams is exactly that – one entirely of my own fabrication, yet intriguingly it is familiar and consistent from dream to dream. I originally believed it was Heathrow or Bangkok but it bears no relation to the reality. It is purely my own creation. My very own virtual airport. And if I never visit it again, I will be extremely happy!

So no matter how much I try and restrain my fears and anxiety in the light of day, the brain keeps on processing and whirring and spits out the most incredibly detailed interpretations of these fears when the darkness falls.

My fears have been cranked up an unkind and steep notch in the past few days. Capt Paranoia, or cancer, has played a particularly nasty trick. On Sunday morning, I attended a very interesting session in Yangon for General Practitioners to enhance their awareness and understanding of cancers. There were a number of presentations highlighting the most common cancers and their key signs and symptoms. Breast cancer came first (this is how I have connected with the Foundation which is working in this area – more about them in another post), followed by ovarian, colorectal, lung, oral….. As a lay person, there is always the twinge of worry when you see lists of symptoms but I was shocked into a cold sweat when I saw the list of symptoms for cancer in the liver. I mentally ticked off symptoms I had not realised were connected to the liver. Last week, feeling uncomfortably full after a meal. That funny little twinge I had been feeling off and on under my right shoulder blade. Symptoms which are incredibly specific. My mind did its own “sift and search” function and spat out the suddenly remembered detail that I have nodes on my liver, noted during previous CT scans which have remained unchanged but monitored. Have these nodes developed sinister cells? Cancer in the liver. That is a whole new ball game. One I don’t want to play. I am in that limbo space now waiting for the checks. Can these symptoms be caused by other things? Or am I entering a very new and feared territory? One thing which I am thankful for, is that I already have these checks booked. There is already an upper body ultrasound booked as well as other checks. I am prepared for CT and bone scans as it has been two years since the last ones. Oh how I hate CT scans, but they do tell a full story. I don’t have a horrendous wait, not do I have to think through a “do-I-go-or-do-I-wait-and-see” decision. Wait and worry while this could be nasty. Or speak with my GP and find I am overreacting. (not that my wonderful doctor ever tells me that – he either quietly reassures me, or asks me if I have my passport in my pocket!) This could not have been timed better in fact. Routine checks that will reveal whether this is cancer reappearing or whether it is all in my mind.

When I arrived at the airport this morning, I pushed my travel bag, laptop back and handbag onto the security screening machine, and walked through the twinkling, screening frame towards the frisking security station. As I went to step onto the raised block I slipped. I didn’t go down, but just slithered momentarily. Glancing down, I realised that I have been so preoccupied that I left home in my indoor shoes, affectionately nicknamed my tsunami sandals (another long story, but I associate them with protection). Those sandals never leave home now, they are too precious and besides they are hardly appropriate formal footwear. Happily they are not quite “slippers” but still I delved into my bag and pulled out another pair for the flight. But my mind has already made its own interpretation. My slippers have come with me to look after me and remind me of other dangerous situations I have been in.

The thing about cancer is that while it is very much a physical disease, it pervades the mind in the most sinister of manners. It causes such torment and torture and brings those expressive dreams.

Only time will tell how much of this is in my mind. But all of it is ON my mind, and that is that nature of a cancer diagnosis. shadowselfie on mind

So please, don’t tell me it will be fine. Only the tests and the Doctors can do that.

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The Visitation

So, while all the grump and rant was going on about the Femara side effects and the afters of treatment, just to ice the cake, I have had a Visitation around the same time. Only now am I able to share that.

The first element of the Visitation became evident not long after I had posted the aforementioned “thanks, but no thanks” rant. Possibly this was retribution?

I had an infuriating itch, under my prosthesis. I absentmindedly swatted at some invisible irritation for a while, before heaving myself off to the bedroom and having a look at what was bugging me. Perhaps literally.

There was some clear irritation – possibly a bite, but it was incredibly itchy. I did not scratch, but tried to soothe the area and willed it to stop itching.

When I looked at it properly, my heart stopped. There was a mark, the approximate size of a cigarette burn, less than 2 cm below my scar. Let’s call it a wirple – after all we have been here before. The “wirple” was red and angry and weeping slightly, as if it had been scratched and clawed at. But I had not been scratching.

I have been aware that Captain Paranoia has not been very far away even if he has not been as intrusive and troublesome as he has in the past. He has been there, as a presence, keeping me on my toes, but not actively pursuing me.

But here began the serious part of the Visitation.

On seeing this new wirple, Captain Paranoia leapt into action. With one single bound, his feet were on my shoulders, as he leaned right over my head and pressed his nose, upside down, next to mine his eyes glinting. His gloved finger jabbed at the wirple with jubilation, as he pulled my ears and tweaked those fine hairs at the base of my neck to make my eyes smart.

From my shoulders, he leapt on to the floor, dancing around, high fiving himself and my wirple alternately. “You know what that is?”, he was screeching? “It’s skin mets, hah!”
paranoia

I did not need to be prompted. Such a mark on my skin near the scar is automatically worrying. The scar represents the whole area which was home to my left breast. And two tumours. And Paget’s disease. Which tells clearly that the skin and not just “stuff inside” was malignant. The scar which intrudes even into my right breast shows clearly that the margins needed to ensure that there was no evident cancer in that area, had to be radical. There was little flesh left, and only a thin covering of skin over my ribs and the extensive removal of cancerous lymph nodes to remind me that cancer had taken quite a hold.

So it does not take an extreme leap of thinking to acknowledge that although surgery had been radical, chemotherapy as great a regime as was possible and radiation extensive, the possibility of cellular cancerous activity is entirely within the realms of possibility. Especially so close to my scar.

On Monday morning I took a series of photographs. There was no point in heading to my doctor right away, but by recording the wirple I could at least show if it was progressing.

On Tuesday morning I took more photographs and compared them with the previous day. The wirple was most definitely still there. It had changed from an angry, slightly weeping area to an equally angry but enclosed wirple, with a crusty top. Just like a cigarette burn. Shit! Double Shit! This was not looking good. Captain Paranoia was by now living on my pillow, tweaking my earlobes if I dropped off to sleep. Whispering in my ear. Just check, he was telling me. Just have a look at the Google images. Dr Google is on standby. Go on!

I cannot tell you the reserves of determination (and fear) it took to resist that temptation to look at images of skin mets from breast cancer. I remembered consulting my doctor here in Yangon when the first wirple appeared and together we looked at skin mets images. And were marginally reassured. But this wirple was different. The last one had been a slightly hard area under the skin, painful as well as itchy, but not inflamed or weeping. This one looked sinister to me. The crusty area scared me. And the location terrified me.

On Wednesday I took more photos. I had swum that morning and the crusty scab had fallen off (sorry about gross detail, but heavens above, this is cancer we are talking about and cancer does not do genteel!) The area was no smaller, but equally it was not larger. I needed to monitor this to see if the crust and scab formed again and if this changed in size.

This Visitation was in full force.

On Thursday I took more photos. The area of the wirple had not increased or looked as it had decreased. It also just seemed to me a tiny bit less angry. Cancer does not get better, it gets worse, generally, Dr Y had advised me when wirple No 1 had appeared. This was not significantly better, but hey it was not worse.

I allowed a minor exhale.

Briefly.

Captain Paranoia was still urging me to consult his sinister partner, Dr Google. And finally I did. I am sorry, but I did. But hey, I am proud that I waited until the wirple was either stable or lessening. That has to be progress – right?

The crust had not re-formed. The wirple was less red and angry. It was not getting worse. Nor was it getting significantly better.

On Friday I again rose at dawn. There was some drizzly rain. Out came the camera. More photos of the wirple. It looked, dare I say – slightly better”? Perhaps less angry? Perhaps not so big? It was very hard to say, but I was glad of my photographic record of its journey.

By Saturday, finally I exhaled properly. It was clearly disappearing gradually. Captain Paranoia sloped off to the wings. He is still there, and jabbing unhelpful suggestions about the joint pains in my knees and elbow, but at least he has stopped that infuriating taunting, his face is no longer pressed against mine and his horrible creepy fingers now not pulling at those sensitive hairs at my neckline.

I cannot completely exhale, as I know that this wirple has to be monitored and reported to Dr W2. But it has not got worse, and has changed from an angry crusty wirple to a tiny, more healthy pink mark.

On the face of it, this has been a very minor tale of a probable bite on very sensitive skin. But in fact it has been a much greater tale psychologically, particularly in its timing. This has been another encounter with our deepest fears and a major Visitation. I am sure that this is not the last, but I for sure wish it were.

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.

Keeping the conversation going

When I bent down to pick up the gauntlet which Marie had sent in my direction late on Wednesday evening, I had no idea that the resultant post and re-post would attract nearly so much attention.  Being part of the challenge brought a real sense of kinship.  What particularly astonished me was the strength and immediacy with which a host of posts appeared around mental health in connection with a cancer diagnosis.  And the message came across loud and clear!  Once cancer is introduced to our mind, it plays havoc with it. Yet, we feel that we should hide these troubles, such is the stigma of mental ill health.  Judging by the speed at which posts and re-posts appeared, this was not a new unfamiliar topic, but something very much at the forefront of our cancer experience.  And particularly at the forefront of our continued cancer experience long beyond diagnosis.

I was particularly surprised, that when I re-posted my earlier discussion about Captain Paranoia, to see that it generated even more comments than the original.  In fact there were almost double the number of comments.  This is clearly a discussion which must be kept alive and kicking.

So here I am with a short sequel, keeping the conversation going, and adding in a couple of extra spoonfuls of pepper to the mix.  Firstly, I am posting a marvellous poem from Sarah of Breast Cancer Lottery which she wrote in response to the post about Captain P.

Mr Paranoia

Hello Mr P so we meet again,
I hear the seconds ticking I must be insane,
Midnight as come calling and I am awake,
How much more Mr P must I take,
You shed doubt in a tired mind,
My reasoning you will grind,
I know my doubts will be nothing,
Mr P why are you bothering?
I hate your whispers of doubt,
If you were a person I’d knock you out,
The damage you do with your negativity,
Can even stump my creativity,
Why Mr P? Why are you here?
Why do you create so much fear?
I want to sleep move forward from this pain,
But instead I’m sat awake again and again,
Dawns chorus has begun,
Mr P look what you have done,
At least the birds are happy,
Now I will be left feeling crappy.

And secondly, I am sharing for a second time, the post I wrote earlier about Capt P and his relationship with Dr Google.

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!!!

* * * * *

 

We must keep this conversation going…….