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.

Advertisements

More than a broken camera

My little blue, point and shoot camera has given up the ghost and stopped working.  Recently it sometimes refused to start up, but with a sneaky battery boost it would forget its obstinacy and wake up. But now it has completely frozen, lens protruding and a malfunction message.  No pulse, no heartbeat. No response to resuscitation attempts.

And my mind is similarly paralysed, paranoia lodged firmly in my brain.  I am quietly freaking out.

I have just returned from a field visit to our project sites in a township in a remoter part of the country, and as always took far too many photographs.  Each time I switched on the camera, to capture a passing image or moment I nervously awaited the digital start up beep to tell me the camera was functioning.  Then on our flight back this morning, as I switched it on to snap a sight which caught my eye, I was disappointed that it gave a little warning “ting”.  A message told me there was a lens malfunction and to restart the camera.  Which I did.  Only to receive a repeat message. Again and again I tried.Nothing.  The lens is still stuck.  The camera appears to be dead.

I have visited this same township before. And bizarrely, the camera I had then started to malfunction while in that very same township. That was my old, faithful first digital camera, which had taken thousands of photographs in Nepal, Thailand, China, Mongolia, India, Sri Lanka, Kenya, Indonesia, Bangladesh, Pakistan, the UK and of course the early months in Myanmar. I had bought it nearly four years previously and had dragged it everywhere with me, loving the novelty of digital images. I especially enjoyed the fact that I could never run out of film.  But the screen stopped functioning during that visit, and all images were plain white. My camera had come to the end of its short but intense life, and has lain at rest in a drawer ever since.

My very first digital camera

My very first digital camera

The visit to that township was in September 2009.  Eleven short days after my return to Yangon from that field visit, with my defunct camera, I discovered a lump in my breast.  A few days after that I was sitting in consulting room No 59 in Bangkok’s Samitivej Hospital, the words “highly suspicious……… cancer….. highly suspicious…….. cancer………. cancer……… cancer” ringing all around me. The rest is history, as in the history of the feisty blue gecko entering new and unwanted territory. Within twenty days from my return to Yangon with my broken camera in September 2009, I had had major surgery and the confirmation that I had two tumours and cancer in six lymph nodes.

The neat little camera which has finally broken today, was a replacement for the camera which did not last after that earlier field visit.  And just to add the icing to the bitter tasting cake?  My cute, lucky blue, newly broken camera was my very first chemo treat.

My cute little blue camera - chemo treat No 1

My cute little blue camera – chemo treat No 1

My next round of checks is in directly front of me, and the associations between the first field visit, the broken camera and the word cancer echoing around the room, are too obvious for my fragile mind not to draw immediate parallels.

Add that to the recent raised markers and increased medical surveillance. Is it surprising that my mind has rushed into a dark space?  Is it any wonder that I am quietly freaking out?

Reason tells me that the broken cameras and that particular town are nothing more than a quirky coincidence.  But a sensitive mind darts into irrational places.  Particularly a mind which has already been pushed into dark corners it never dreamed existed.

Accompanying baggage, starfish and secret wish lists

In the first two months of the year I have had an exorbitant amount of travel.  Which I love, if I am honest.  Even if it is draining physically, I find it energising (how illogical is that?!) and fills me with motivation, enthusiasm and inspiration. I get a real kick from visiting new places, soaking in the surroundings and exploring.

But even although I have been travelling on my own, I have not been alone.  I have been accompanied by an unwelcome presence. He has not been there constantly, but I keep catching him feeding me unwelcome snippets of information.  It is that wretched Captain Paranoia.  He has been intruding on my travels as I skip from city to city, airport to airport and street to street. He is lingering just behind me, as I explore and I sense his presence around me.  He is waiting for me when I get home too, smugly making himself comfortable, oblivious to how unwelcome he is.  Or perhaps that is part of his strategy?  He has been particularly disturbing my sleep.

It should be no surprise that he is around.  In just over a week, I have my next round of checks.  This time there will be a six month, rather than a three month interval between checks and it is causing added anxiety.  After all, quite a lot can develop in six months.  Captain P takes particular delight in reminding me of this.  I know I will need to ask Dr W about the pains I had back in December and as always I have convinced myself this will need some investigation.  The prospect of the blood tests and what the tumour markers might reveal also plays on my mind considerably.  This time I will see four doctors rather than three, as I have an annual post radiation check up with Dr C.  And four is an inauspicious number.  Plenty to feed an anxious mind.

i slept particularly badly on Thursday night. I would doze off for a while and then wake, looking at my watch, to find out only 14 minutes had passed since i had last checked the time.  i would toss and turn.  i would curl up under the sheet as it was getting cool, only to throw the cover away a short time later as I was too hot.  Knowing I would get up at around 5.30 am, my subconscious would prevent me from sleeping soundly.  But at some point I must have dozed off as I found myself paddling in a crystal clear sea.  The water was warm, and the water pristine.  The sunlight was dancing through the rippling waves and picking up the tropical marine life as if in a microscope.  I had a sense of awe and wonder as I picked my way over the white sands underfoot and felt a flush of delight as I spotted a starfish.  I have always wanted to see a starfish in the sea. As I looked more closely, I saw another one, beside some colourful coral.  And then another one.  This was too special to miss and with the water being so clear I paddled gently towards the shore so that I could get my camera and capture these amazing images.  And then I woke up!  But the glorious images and the accompanying emotion stayed with me through the day.  I could see the starfish every time I closed my eyes.  I could even re-call it when my eyes were open, if I am honest!

As I luxuriated in this self-made entertainment package, I realised that seeing a starfish in the sea is something I should put on my secret list.  My secret list is a kind of “things I would love to do or see and if I don’t make an effort I will find out one day I am too old or ill to do them”.  A wish list really.  This is secret wish list, with some pretty weird stuff on it.  Remember, it’s a secret…….

  • Meet a blogging friend in a new place (repeat as often as possible)
  • Buy a picture/piece of artwork at a gallery opening and watch them put the red sticker on it.
  • Book into the Oriental Bangkok for a weekend.  Or maybe a night.  Or maybe just have afternoon tea there given the price!
  • See a kangaroo in the wild.
  • Visit a country with the letter ‘Z’ in it.
  • See the Aurora Borealis (northern lights)
  • Get funky, colourful nail art on my finger and toenails just for fun, just for once.
  • See the rings on Saturn through an astronomy telescope
  • See some of my writing in print.  In a book with real pages!

And now I have added

  • See a starfish in the sea

I remember lying in my hospital bed after my mastectomy.  My head was trying to absorb the horror of the previous days.  I was trying to come to terms with the reality that my left breast had been growing cancer, and that it had been removed along with the 2 tumours it had been hosting.  Desperately trying to get to grips with the reality of a cancer diagnosis, I tried to escape by watching the TV in my room.  This was foiled by the Movie channel playing one film on a loop.  Can you believe they were playing “The Bucket List”?!  Over and over, again and again, and no matter what time I switched on, there it was, goading and taunting me in my immediate freshly diagnosed cancer mindset. I really want to differentiate between this secret wish list, and a bucket list.  In Scotland a bucket is another word for the bin, or trash, or garbage (depends where you come from).  I am thinking of another list which would be of things I do not want to waste good time doing and that would be my bucket list.  My “chuck it in the bucket list”.  It would probably have things like filing bank statements and tidying that box of old papers in the spare room.  But that is for another day.  For today, and the coming days I will focus on my secret wish list and re-live seeing those starfish and trust that it will keep Captain Paranoia at bay.

Shhhhh…….

I have been rather reluctant to write this, as it smacks of tempting fate, but there is an unexpected void in my life at the moment.

I arrived in Bangkok this afternoon and the Scary Big Annual Check is only a matter of 60 hours away until it kicks off.  The Scary one with  scans, mammo, bloods, bells, whistles, oncologist, surgeon and endocrinologist lined up to make it a memorable day.

But there is something missing.

I am hunting for the “whisper” function as I key this in gingerly, stealing a glance to my  left and  to my right.  Deep breath.  He really is not here.  Captain Paranoia is not sitting on my pillow feeding suspicions into my mind through my ears as I sleep.  Nor is he on my shoulder as I go about my daily activities.  And furthermore, I haven’t consulted Dr Google, nor even felt tempted to consult him, since the appearance of the wirple just before my last round of checks.

I do have to admit to a rather sorrowful frame of mind, as I noted in the lead up to my cancerversary.  I am not sleeping well at all.  I am anxious of course, but I am not lying awake wittering about the tests, I am just not able to sleep well.

I have been wondering if Capt P is perhaps rather busy just now.  After all, there is a whole month of awareness raising to work on and his speciality is exploiting anxieties which often appear as a result.  So perhaps he is not troubling me because he is spreading himself too thinly around that his presence can’t be felt.  While I find his company highly distasteful, I hope that he is not around in my life does not mean that he is wreaking havoc in someone else’s life.

When I think about it more, I realise that it probably helps that there is not a specific worry that he can latch onto right now.  Sure I have a couple of vague niggles which I will ask Dr W2 about, but these do not merit the status of a “wirple”, that skin mark which terrified me before the July checks.  Capt P had effectively convinced me I had skin mets.  Dr Google backed him up.  They had executed well coordinated pincer movement, trapping me in my own fear.

I reckon that the Captain thrives when there is a specific sign – a dizzy spell, a lumpy bit of skin, a mark, a pain.  He leaps into action causing our minds to fire manically in all directions, alerting Dr Google to be on standby.  I imagine they have a special Twitter arrangement, following each other round and round.

But for now, whether it is because my unease is general rather thank linked to any particular concerns, or whether he is just far too busy to give me grief, I am heartily glad to have this unexpected and very welcome respite.

Tuesday will tell us whether this is another nasty trick, or whether he is weakening.

Captain Paranoia

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!

The glory of a head-cold

I never thought I would say this, but although I have a head cold and feel as rough as a very rough badger’s beard, I have a smile on my lips.  My throat is scratchy and stinging, my nose is blocked, my upper lip is cracked and tender and I can’t breathe.  I feel a bit fuzzy in the head (more so than usual;) ) and should be feeling miserable.

But I am not in a gloomy mood.  The reason is not that I have found some wonder drug that banishes the misery of a cold.  Nor is it that I am having a jammy “hey, nothing can be as bad as cancer” moment either.  No, the reason is because I have finally found something that Captain Paranoia is unable to penetrate.  With every tiny ailment, ache or pain, I have an immediate worry that it is a return of the cancer beast.  The dry spot of skin on my face which I feared was face cancer (and Dr W2 could not even see).  The dizzy spell a few months ago which I immediately attributed to brain mets, and in fact any little bump or twinge turns my mind first of all to cancer. However, a head cold is just a head cold, right?  I don’t even need Dr Google to verify my medical facts here.

I have an image of Captain Paranoia, standing in the corner, a bit like a comic superman type figure, with his hands on his hips, stamping his foot and scratching his head.  He just can’t find any reason to believe it is a clue that there is something suspicious going on!  Finally I have notched up a victory against him!