Aiming for boring, avoiding interesting and ending up complicated!

What a strange 72 hours or so it has been. I have travelled internationally, felt fraught and anxious, been unusually outraged, been carried along a conveyor belt of tests, scans, blood draws and appointments and finally emerged through other side. I feel as if I have been passed through one of those old washing mangles!

mangleAs has been the norm for the past however many checks I have been through now, the process began with a fast from midnight of Monday. On Tuesday morning I presented myself at Counter 2 (of my hospital) with my usual smile and received the usual warm greetings from the staff.Behind my smile there is the usual nervousness as I know I will be guided towards the first step of the day. Appointments, and especially the Big Check feels like a conveyor belt.  I turn up at Counter 2 and from there am set in a process which will spit me out later once I have passed the variety of stops on the way.

And indeed, in no time I was on the conveyor belt and heading towards the first stop – the lab and the blood letting. After that brief stop, I was back on the conveyor belt and being ushered towards the imaging department for the next step – mammogram. Within fifteen minutes I was off again and heading to the X-ray rooms, each time passing one of the places I hate most – the CT scan room.  Bleurgh.

Within 45 minutes of arriving at the hospital, X-ray was also done and I was being led to the ultrasound room, currently in a temporary space due to the installation of a new MRi machine.  Every year, the ultrasound brings a chill to my soul.  I am instantly transported to October 2nd 2009 when I was watching the technician find ghostly spaceship shapes and pegging contours of more than one mass. This year was no different in terms of the sensation of dread and fear, but in the temporary room there was no screen above my head for me to see the images on the screen.  If I turned my head and craned my neck I could see what was going on, but it was preferable just to lie still and let the process take place.

In contrast to the mammogram and x-ray, the ultrasound took for ever.  Occasionally I peered over my shoulder but knowing I understand nothing of the shapes on the screen I quickly gave that up and tried to zone out.  But that was not so easy.  She was paying particular attention to one part of my upper abdomen around and below my right armpit.  More and more cold jelly appeared on my skin and the pinging and pegging started as she worked her way around whatever she was working her way around.  I think that some “priing” noises were the sound of saving an image, another “beep” noise signified pegging a shape. Or perhaps it was the other way round.  At any rate, I could not work out which was which and just listened to the sounds as my stomach tightened the more this continued.  Eventually, she stood up, told me she was finished and walked out of the room.  And that really rang alarm bells – usually I get a little informal feedback, confirmation that there are a couple of small cysts and liver wibbles but nothing to worry about. I hate hearing nothing.  It freaks me out, even more than the undue attention which had been paid to that one particular area which had started out the freaking out.

It is sobering getting cleaned up and changed after these tests and scans.  It all becomes immediately real again.  And I cannot describe the torturing fear in that space of time between scans and review/results. I am extremely fortunate that having my checks in Bangkok , that time is far shorter that elsewhere. I was told to go and eat breakfast, but have no idea what that was or whether I even finished it. My head was focused solely on the repeated scanning of one area and the abrupt departure of the doctor.

Waiting in the area near Dr W2’s consulting room passed in a daze.  I did not even attempt to read my KIndle and could make no sense of the obvius images on the TV with reports of flooding in other parts of the city. I was in another, dimension, suspended and unable to move in any direction.

Eventually, my appointment with Dr W2 came round and I moved into his office. As I sat down, he was reading the scan reports.  There was a great deal of text on one of the pages and I could feel my heart rate increasing as he read over the results with a dead pan face.  Finally he looked up.  “It’s OK” he said.  Your mammogram is normal.  Your X-ray is unremarkable.  And the Ultrasound is mostly fine.”  I could feel my eyes welling as he spoke those words.

I of course asked about the alarming attention of the scan and he told me that there are some “wibbles” (that is my medical term not Dr W2’s – I can’t remember what he called them) on my liver.  My liver is not young – in fact it is the same age as I am and showing what is likely to be signs of aging. He will continue to monitor these marks.  Previously, CT scans have shown up liver wibbles, but (thankfully) I had not CT scan this time.  (I hate them SO much). There are more wibbles but “favoured benign” on the ultrasound.

He told me that my tumour markers were not worrisome – one had risen a little but has been consistently higher wince the embolism so he is not worried.  And the other one has gone down from the slightly upper range of normal to low!  Which is very welcome.  He asked me if I am taking my medication.  He asked me about three times, when of course alarmed me. Despite the heavy side effects I am taking my meds meticulously and told him so.  We went on to talk about the side effects. He has suggested another med which should help with the joint pain and stiffness.  Let’s see how it works. He examined me and noted that my right leg was slightly larger than the left which drew his attention.  In fact it drew his attention so much that he did not even notice my funky toenail art!  That is not comforting at all!  He is also requesting another bone scan on my next round of checks in 6 months which is also a tad disquieting.

Finally I got his verdict.  “Fine but complicated.” With the original Stage 3 diagnosis, the pulmonary embolism, side effects and the need to take a number of heavy meds that makes me “complicated”.  Which is ok, in that it is far better than being “interesting”. I was “interesting” when undergoing the chemo and he would have to calculate how many drips of toxins to give me to maximise the effect of the chemo without over toxifying me! I was “interesting” when I had spaceship lumps and unusual pathology.  No, it is not fun being “interesting to an oncologist”. It is not, however, as good as being “boring”.  That is what I really want to be.  So boring that my oncologist would have to comment on my funky toenails as there is nothing else of interest to talk about!  One day perhaps?

I also saw my lovely surgeon Dr W and he was also reasonably happy with the results.  He asked me how long now since diagnosis, and when I told him it was 4 years and 8 days he expressed surprise.  “That’s incredible” he said.  I am not sure why it is incredible – I prefer to think it is because time passes quickly and not that when I originally presented he did not expect to see me in 4 years time.  I did not ask him why in case I did not like the answer.

So, finally I reached the point where I could get off the conveyor belt, once I had picked up another six months of medication and the paperwork and walk out into the sultry Bangkok evening air two days after I had embarked on this round of checks.  Able to breathe out, at least for the next six months. Which I know is exactly what I wished for.

exhaleI guess that NED (No Evidence of Disease)and I are not exactly walking arm in arm along a sunny path, but we are kind of in the same town.  Maybe we can get a bit closer in 6 months time?  That sure would be good.

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And the Big Man said………..

This is a little late in posting, because I found myself, as always after the checks, totally spent, emotionally and physically.  I have been really nervous about this latest round of checks.  Probably a deal more nervous than I would care to confess, particularly to myself.   On top of the anxiety, the inability to plan beyond a few weeks has brought a strain that has been constant. That anxiety has been fed both by my own health, as well as the ongoing family situation.  All in all, exhausting and wearing.

As usual, and based on the experience of recent months, I have refused to book any travel or make any plans for immediately after the checks.  I have had to rearrange or cancel travel too often and it feels as if I am tempting fate if I do book travel.

As usual, I had to fast from midnight before heading into the hospital for the blood draws and the start of the whole check process, on Thursday.  Before I left, I had a few minutes online to make sure there was no untoward news from home.  I start and end every day in that way.  There was nothing from Scotland, but I was terribly saddened to learn that yet another woman, Donna Peach, whose blog I follow, has been taken by breast cancer. As her husband told us using her own words, she had danced into the light.  The fact that she is the third person I know personally within less than three weeks to be stolen by cancer, is a stark and unneeded reminder that this disease is aggressive and unpredictable.  Seeing the sad news of Donna’s death hit me additionally hard on the morning of my own checks, as I selfishly felt myself interpreting this as a “sign”, which did not bode well for the day.

So I am very happy to report that as far as my own checks are concerned, it is good news.  And for once no little provisos it seems.  I have been dancing around NED these past months and he has been almost there but not quite.  I did not quite get the clear “we see No Evidence of Disease”.  Rather, I have had these little snippets of “hmm, it is probably not anything sinister but…” There is a huge difference between NED and not quite NED and it is very hard to communicate how different they are.  In the same way there is a huge difference between No Evidence of Disease, and Evidence of NO Disease.  And that is what would make life look very different.  That is a discussion for another day.

These checks involved the usual bloods, prods and an unseasonal bonus ultrasound which pegged out a number of little shapes.  I almost prefer not being able to see a screen as I am always compelled to look and analyse.  I even seemed to get a discount, perhaps for good behaviour, or more likely for being a frequent flyer and clocking out so many hospital miles!

My surgeon examined me thoroughly, reviewing the ultrasound and saw nothing to be concerned about, noting a number of small cysts, and sent me packing.  Not before he admired my toenail colours though.  I told him that this was my auspicious colour and therefore I had a clear expectation that the checks would go well!

auspicious toes

Then I saw the Big Man, Dr W2.  Again a lot of prodding, and questions about my fall.  I blamed Tamoxifen for my clumsy toes, to which he countered, “You’re not on Tamoxifen any more”.  I explained that I meant Taxotere and the neuropathy which has never entirely disappeared and left me with clumsy feet. As well as clear memory and confusion issues which I had just demonstrated unintentionally!

The upshot of the bloodwork is that, although my tumour markers are still a bit high, they are not rising.  One of the reasons I was especially anxious about these checks is because it would provide three tumour marker readings.  And three results will show the start of any trend rather than one result out of context, or an A to B result.  If you want details we are talking readings of 30.2 then 27.8 and now 30.  So this shows relative stability and not a rapid increase.  The fact that is above the reference range (or “normal”) is quite probably related to taking warfarin.

He also commented on the toenails!  Note to self – get the same colour next time, it seems to work!  The biggest indicator of the day came from the words of the Big Man (my oncologist) himself.  He told me that he wants to see me again in SIX months.  Not three months which I had been expecting to hear.  Which I had not even dared to hope that he might say. No he clearly said SIX months and calculated the meds I would need for that length of time. Six delicious long months.  This means that I can start to think about planning my life again.  This is a biggie, as I had already progressed onto six monthly checks nearly two years ago, and then the embolism followed by the raised tumour markers meant that I was called more often.  It felt like a huge step backwards at that time.  So this progression to six months is a Big Deal and hearing those magic words made me realise just how huge it has been in my head.

The checks were tough for another reason.  For almost as long as I can remember, my friend and I had planned our checks for the same time, so that we could support each other and be naughty cancer rebels in the waiting rooms. We have both been through unexpected extra scans, and scares and know how to be there without either dramatizing or trivialising what it is like.  She was not with me this time.  She has moved out of the region and we are both now going through these in our separate ways, still supporting each other online and equally outrageously.  I missed her far more than I had realised I would.  And when I got back to the comfort of my room later, I found myself weeping unexpectedly.

So the headline, in the words of the Big Man is “come back in six months”.  Not three months, not tomorrow, but six months. Six. Long. Months.

I now have to buy a new suitcase, to replace the one which was damaged in the return journey from Scotland.  I will make sure it is big enough to stowaway NED and keep him locked in captivity for as long as I can keep him there!

DSC_0073

And in the meantime, I can focus on the important things, especially when they are images created by and bathed in the soft light of the late afternoon sun. And particularly when they are captured by my New Camera.  And that is another happy story for another day. 🙂