Silence, a haircut and flowery shirts

I have been too quiet recently.  Silence usually means one thing in my world.  Worry. This week has seen the culmination of some full-on worry.  So I am very happy now to be able to provide an update. An update which does not contain bad news.

The key elements of the update are:

– A haircut.
– A Doctor in a flowery shirt, nay, an oncologist in a flowery Songkran shirt.  Because a Doc in a festive shirt can’t give bad news, can he?

Last year when I arrived in Bangkok Airport at the start of the Thai Songkran Water Festival, my passport was stamped by an immigration official wearing a flowery shirt.  That’s a first and I can tell you it made me smile.  All of the immigration officials were wearing flowery shirts and broad smiles. So a flowery shirt is a Good Thing. An oncologist in a flowery shirt is an unexpected thing. And indeed he cooperated by not giving bad news in his flowery shirt.

SongkranShirts
I still don’t now what is causing the spinal pain which has been troubling me recently, but a bone scan has ruled out metastasis to my bones.  Causes could be an old injury, calcium depletion (thanks to cancer meds) or old age.  Onc suggests old age.  I high five him.

Hence the hair cut. I never get my hair cut before hearing the NED words. NED – No Evidence of Disease. A haircut is an acceptance of NED. An acknowledgement that there is no imminence of nasty treatment.  Treatment which might cause hair loss.

As always, my preferred way of processing this mess that goes on emotionally is by writing it and there is a heap of blah coming in this space.  I have been scrawling in freehand in the waiting room, in my room at night and even in Starbucks after the injection of radioactive dye before the bone scan. Those scrawls capture what happens in a mind which does not know what the future holds.  They will be shared here very shortly.

But for now, there is no bad news. Just a very long overdue haircut and a Doctor in a flowery shirt and big smile.

Happy Songkran, Pi Mai and Thingyan Water Festivals to all.

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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. 🙂

Merry-go-round!

I feel as if I have been on a merry-go-round which has been spinning me around so fast that I have been unable to get off.

The weeks leading up to this set of checks have been particularly tense, with the stress of the CT scan re-run playing high on my mind and those nodules on my liver which the Doctors want to check for signs of change or malignancy.  I remember at the Big Check in October that I was very happy to have this scan re-run after 6 months, because it would either spot something sinister early or it would reassure (and of course this is what I was holding out for) all that the marks were not worrying.  All of that is fine in theory, but the reality is that as the checks approach, you start gearing up in case it is bad news.  Better to be mentally prepared, as it is much easier to be relieved if all is well than to handle a big shock without preparation.  That is the way I prefer to go about it.  Full tilt towards panic!

As the checks approached, the Merry-go-round picked up speed and I knew that it would not slow until I got to the other side.  Well, now I am on the other side, the Merry-go-round has stopped and I have picked a path onto terra firma again.

Thursday was a difficult day, and as always started with my fasting blood tests.  My first appointment was at 8 am so I turned up at Counter 2 at 7 am so that the blood letting could begin and results be ready in time for the appointment.  My stomach was churning because I knew that the CT scan would also be on the menu shortly and that involves needles, amongst other delights.  Sure enough, I was asked to wait and I saw the nurse pick up the phone as she called the oncology ward to send one of the angels down to put in the IV line and take the blood.  She arrived a few minutes later with her picnic basket full of vials, syringes and other goodies and I was escorted into a side room to get the needle in.  Although I had fasted from midnight, I had been drinking lots of water before that to make sure I was not dehydratged.  It also has the benefit of making making the veins more prominent and in theory, easier to access.  Unfortunately despite my strategy, the veins were decidedly shy and she spent a bit of time slapping my wrists to try and get the veins to appear.  Eventually she had to resort to the one in the back of my hand.  You know that very sensitive, tender back of the hand.  Sure enough, even her gentle touch could not make it a painfree needle stick and my poor wee hand was unable to move because of the awkward placing of the needle.  However, it was in and one of the nasties was ticked off the list.

I then prepared to see Dr A, for my first appointment, but instead I was sent in another direction – towards the Imaging Centre and the dreaded CT scan.  My schedule was rearranged so that I would have that first and then see Dr A.

I had to wait until a check of my kidney function (part of the blood testing) came back to make sure that they were working well enough to withstand the rigours of the radioactive dye.  Nice thought!  All too soon I was taken through to change,  which was rather a struggle given the awkward placing of the IV line.  The CT scan process was familiar and not too scary, but of course it is still unpleasant and my blood pressure perched rather too high as an indicator of my anxiety.  The start of the process is easy, sliding into what feels like a washing machine door which the spin cycled is underway.  This time a man’s electronic voice instructed me to hold my breath, and when to breathe again.  They must have sacked the electronic woman! Then I was asked to drink several glasses of water in preparation for the radioactive dye. I was again briefed about the effects of the dye.  I would feel hot “all around my body”, and might feel sick and a bit dizzy.   I had to lie down again and the nurse prepared for the dye.  Firstly she infused saline, and asked me to tell her if it hurt.   This sensitive part of my hand seemed to house a rather sensitive vein too, as it was indeed painful.  It infused with no problem, so the siting was fine, just terribly sensitive.  I then had to lie very still and the dye was hooked up.  A recorded voice in Thai made an announcemnet and I was slid again into the circle.  It must have announced the imminent injection of the dye as I felt the infusion hurting my poor hand.  To add to the discomfort, I had to lie absolutely still – and hold my breath!  I did indeed feel very hot “all around my body” as well as the painful infusion.  Luckily it does not last too long and soon it was over.  I asked why it was painful this time and the nurse explained that the vein they used was small and the infusion is pushed fast, and over 30 seconds so it really challenges the poor little vein.  The images were checked to make sure they were clear.  They were fine  and I was very happy when they offered to remove the needle.

I was very glad that the procedure was over, and dressed in readiness for the next part of the process, the appointment with Dr A.

As I waited for my appointment, I had the regular checking of Blood Pressure, weight, temperature and height.  BP was still high and they took it twice, but it was definitely conected with the CT anxiety.  I stepped on the scales, trusting that the results of my swimming and gym activities would be reflected in the reading.  To my terrible disappointment, the scales absolutely refused to show any real reduction.  I was particularly sickened because I have worked so hard to increase my exercise consistently and am very disciplined about it, as well as being very careful about my diet. In Yangon, my weekly weighings have shown a slight decrease but only a kilo or two.  As an aside I should add that I am now swimming every day, (totalling 6 – 7 kilometres a week), going to the gym three times a week and swimming a second time after each gym visit.  I haven’t mentioned this in the blog because while I am no danger of becoming a gym bunny, I am at serious risk of becoming a gym bore!  So I did not appreciate the mean message from the scales.

I was soon called in to see Dr A.  He noted my blood pressure and checked it again.  By this time it was back down to normal so that was good.  Then, to my surprise, he said that the CT scan was through and that although Dr W had been the requesting Doctor, he said that it reported “no significant change” on the nodules on my liver.  I was elated – no change suggests not cancer.  If they had shown any growth or change, I would have needed a biopsy to find out what was going on.  It sounded as if the CT results were the very very best scenario that there could be.  I knew that Dr W would go through the results specifically with me, but having a sneak preview really made my day.

Next he went through my blood report.  Kidney and liver function pretty good, still in the pre diabetic range but a shade down from last test, and cholesterol very good.  I commented on my lack of weight loss despite all that I am doing and he said that the blood results showed very clearly that I was doing everything right.  He then drew my attention to another result, which was not usually tested.  He explained that the thyroid appeared to be pretty underactive.  He showed me a powerpoint slide of how it works so I pretended I understood it a bit more clearly than I did, because I wanted to show that I appreciated him explaining it!  Isn’t it nice when the Doctor explains things?  He said that because my level of TSH (I think) was higher than a certain level that it should be treated.  He went on to explain that I was probably feeling a number of symptoms of this – including irritated skin (oh that would be the suspected IBC which I mentioned here last week) and – weight gain!!  As in, putting on weight.  Getting heavier.  He said that this is almost certainly why I have been struggling with my weight and again said that the evidence of my life style changes were shown clearly in my blood report.  Now while I am not amused at this special “buy one get one free” offer I seem to have been given in terms of medical conditions, I do feel vindicated in being the shape I am.

So off I went, feeling a great deal lighter – metaphorically of course, considering my thyroid kilos – and was able to spend some really special time with my sister who has been around this week.  We had a good part of the day for adventures in Bangkok, and this kept my mind off the next appointments.

All too soon I was back at Counter 2, ready to see Dr W2.  Dr W’s assistant however, was at the Counter and beckoned me to follow her to Counter 3.  I am very obedient, and followed her like a well behaved puppy, as Dr W would see me first.  I only waited a few minutes when I was called in and warmly welcomed.  I am convinced I am not alone in my hero worship of my Doctors.  Dr W examined me first, checking for any lumps, swelling, signals of anything of concern and then giving Twang Arm a bit of a workout.  “Good” he said, and then returned to his desk as I made myself decent again.  He was scrolling through the CT images, clicking through the sequence of pictures slowly and then more quickly.  He seemed to go through them over and over again, paying very close attention to every image.  It scared me witless.  He was obviously looking at something very sinister and all I could do was wait until he told me what he was concerned about.  Finally, he looked up and said that he really could not see any changes or differences at all! I almost fell off my seat!  He wanted to check the images very thoroughly as well as seeing the summary report.  I told him thagt he had got me really worried and he laughed appropriately!

There was not much more for him to say, except to give hubby J a briefing on how to massage Twang Arm’s cording to try and loosen the tightness, and telling me to make sure I got the thyroid problem treated..  With a warm handshake and beaming smiles all round, our consultation was brought to an end and I headed back towards Counter 2.

Again, I had no waiting time before I was called into Dr W2’s room, and not too much anxiety by this time.  I had also seen my tumour marker and knew that it was slightly lower again so well within the normal range.  Sure enough, I had a good natured, microwave appointment with Dr W2.  He examined me thoroughly and suggested a Thai massage might redistribute some of my plentiful right side towards the vacant left side.  That is an unusual approach to the reconstruction question!!

He said he was happy with the CT results and that I just needed to come back in three months.  I asked some of my questions and he was typically relaxed in his responses, and essentially gave me carte blanche to do what I wanted, including dying my hair!

Given the very little waiting time, and having seen Dr W before Dr W2, I suddenly found myself free (after visiting the cashier of course) a lot earlier than expected.  So I headed to the 5th floor and the oncology ward to see if I could have my port flushed that evening instead of the next morning.  The oncology nurses were their usual delightful selves, and would have been happy to flush the port.  However, I had left the precious numbing Emla cream behind as I had expected the flush the following morning.  There was no Emla handy, and if I had gone back to get it and then waited for the hour for it to take effect, it would have been too late.  So reluctantly we agreed that it could be done in the morning.  I am still a terrible coward when it comes to the port cleaning – and you can see why from this picture of the special port needle!

Finally, finally I could feel the Merry-go-round slowing down and I was able to step gingerly back onto firm ground.  I cannot describe the overwhelming relief after this thorough round of checks.  The horrible uncertainty which surrounds everything before the checks is removed and it is possible to make plans and arrangements.  It is marvellous to be able to look ahead and see the path clearly.

And in that vein (no puns intended of course), we have indeed made a plan for the next few days.  In the spirit of my three guiding words for the year (harmony, vitality and adventure), we are heading on an adventure!  And that is the subject for the next blog post!