Adventure

I have in my hand, a rail ticket for a 13 hour journey to a place I have never been before.  I am taking NED on a little jaunt, just to keep him sweet and to make sure he sticks around.

In my possession, I  also have a new, large memory card for my camera, a heap of books and a wide grin.

This is where we will arrive tomorrow morning ……………………. for a few day’s break.  Details and a promise of no cancer talk in the next post.

Adventure beckons!

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!

Unforgettable jacaranda

image

The unforgettable hues of the jacaranda blossom

Why do I always forget?

Every April

when the jacaranda blossom

suddenly appears

I am taken by surprise

Every year

the blossoms appear

Not one by one

Not from slowly opening buds

Not creeping slowly

Nor even patch by patch in the trees.

But one day

I wake up

look to the skies

and there they are.

Bright lilac coloured trees

have taken over the city

while I slept.

And I didn’t even see them

on their way.

They make the dusty city smile

with bright

incongruous

natural colour

everywhere

for several weeks.

Until slowly

one by one

the petals fall

forming a thick carpet

making the pavements bright

holding their colour

for as long as they can.

Fading only

little by little

like my memory.

They disappear eventually.

From view.

From my mind.

For another year.

Discrimination and Deconstruction

I have come to the realisation that I have a less than healthy attitude towards my sole remaining fixed asset.  Instead of feeling as if I should console the lonesome breast, considering it has been robbed of its life partner, I struggle to find anything endearing or redeeming about it at all.

Feelings towards this apparently innocent entity include dislike, suspicion, fear, mistrust and distaste.  I am dreadfully asymmetrical following my surgery and to make matters worse, I have found it impossible to find a perfect matching prosthesis.  My skin is naturally quite sensitive, and when you add to that a humid climate and the after effects of shingles, radiation and the occasional mosquito bite, my poor delicate skin suffers frequent irritation.   I monitor every appearance of rash or irritation with dread, frightened of IBC.  The generous nature of this lone survivor adds to my fear because there is plenty of capacity to hide any recurrence of the cancer monster.   I simply don’t trust the remaining breast – it feels like a time bomb ticking away.  I feel as if it has a malevolent grin as it guards the secret of whether it will also try to kill me.  In fact I actually can’t think of anything kind to say about this poor solitary mammary. i know that it is blatant discrimination – and I don’t feel guilty about it at all.

Tenuously connected to this thought, there is a whole other thing going on.  There is a great deal of discussion on breast cancer discussion sites, blogs of breast cancer buddies and other women who I have connected with on one big topic – reconstructive surgery.  This is the surgery many of us opt for following the mutilation we have undergone to remove our unwelcome cancer visitor.  There are a variety of different techniques, which Dr W briefly outlined to me at the time of my diagnosis.  At that time I remember thinking that I was really not interested in reconstruction – I just wanted the beast removed, and that meant taking whatever tissue was necessary in the process. Another important factor is that I am a terrible coward and did not want additional pain and discomfort other than what was medically indicated.  In the 18 months since the big surgery, I have not yet felt the urge to consider reconstructive surgery.  I do know that may well change in time.  For now, though, the only reconstruction I could face would be the magical, wake-up–one-morning-and-hey-presto-it-has-all-happened reconstruction.  The kind of magical procedure which results in transformation only, and no ill effects, stitches, drains or pain.

I have a sneaking suspicion, that even after several years, I will still not have changed my feeling about whether reconstructive surgery is for me, although of course, you just never know.  Another thought is taking shape in my mind, however.   The fact that I am horribly asymmetrical, coupled with the discrimination towards the sole surviving breast, direct me in a rather different direction.  A rather lonesome direction at that.  Rather than reconstruct the obliterated side, I feel as if I would actually prefer to have a deconstruction of the other side. I would feel less of a curiosity.  I would have the fear of recurrence reduced or removed, and that dreadful asymmetry would be resolved.   I could also buy cute matching pairs of prosthetics, as are for sale readily in Thailand. And I could run for a bus – and it has been a long time since that was a comfortable experience!

In the meantime though, unless there is a medical reason (in other words, a cancer reason) I think that there is unlikely to be any change on the topography.    I know that I am very fortunate that I did not need a double mastectomy so I feel that I should be thankful for having one breast intact.  I realise that I am probably rather odd and ungrateful in my attitude towards my single breast, but that is the way I feel, I am afraid.

Reconstruction doesn’t appeal, deconstruction is unlikely so discrimination seems to be the way forward for the time being.

Happy Endofchemoversary – another Landmark Day!

I have marked a number of Landmark Days over the past months, but this one feels rather different.  It is the first one to mark what feels like moving forward from the diagnosis.  I know that finishing the chemo course was only part of the story, but chemo was a long haul and one which frightened me enormously.  I approached each cycle with nervousness, fear and trepidation tempered with gratitude for the cutting edge treatment.  The 8 cycles started days (18 to be precise) after my mastectomy, when I was still getting used to my diagnosis.  The 8 cycles were to take the best part of 6 months, and take full control of almost every aspect of my life during that time.  I remember sitting in Dr W’s office when he went over my pathology reports just after my surgery, telling me that chemo would take at least 24 weeks.  Around 6 months.  At that time, I really felt as if the nightmare would never end.

So how come I am already marking not just the end of chemo, but a WHOLE YEAR from the end of chemo?  Doesn’t it just go to show that it all does keep moving forward?  I know I have no guarantees that I would never need chemo again (touches wood by the treeful) but I can look back and see just how far I have come.  Indeed it is a wonderful thing to be in this place today, not bald, feeling strong and energetic, my legs working properly and no longer feeling wooden and dreadfully heavy, my fingers and toes having feeling in them, Twang Arm less numb and feeling stronger and three NEDs under my belt.  The path will continue to twist and turn I am sure, but my feet are firmly stepping forwards.

So indeed it is Happy Endofchemoversary to me!  And many more to come I hope!

On hold

One of the most infuriating things is being kept on hold, in a queue to speak to a robot on the phone which is neither able or authorised to answer your questions while you are being told you are valuable and tortured by inane muzak.  My next round of checks are approaching rapidly.  It is that dreadful nail-biting time when I find myself unable to plan beyond the checks.  Life again feels as if it is on hold and I am being restrained from moving forward, or in any direction.

I was reasonably relaxed (apart from the odd bouts of imaginary cancers) until around a month before the check.  Now I am down to counting days (19 days ok?) and the checks are at the forefront of my mind.  This time I will have an additional CT scan which is adding to my anxieties.  This is to keep an eye on a couple of marks on my liver which the CT scan showed at my Big Check in October.  Now, I am thankful that I do not have to wait for the year to pass before another scan, just in case it is anything nasty.  The doctors were not concerned about the marks, but felt it would be cautious to repeat the scan and see if the any changes.  The October scan is a baseline to measure any change against.  And of course it will be hugely reassuring – as long as it doesn’t show any nasty and unwelcome changes.  That, of course, is the big question and the one which is blocking my vision beyond the checks.  Keeping me on hold.

I am a highly skilled worrier, and my regular bouts of cancer scares increase as I approach the checks.  I am so relieved to know that I am not alone.  It is a clear case of the Breast Cancer glasses skewing everything again.  So when I read a marvellous post which conveyed the fears of one of my blogging pals,  I totally related to what she was saying.  I was completely with her in her fear that she thought she had thigh cancer.  It didn’t sound in the slightest unreasonable to me, and in fact entirely plausible.  And given that I have had a number of scares, including a nasty mosquito bite tumour scare, more than anything it reassured me that this paranoia is part of the Breast Cancer Comprehensive Package.

Indeed many of our scares can be easily explained by an innocent cause.  But there is always that chance that the sneaky cancer beast has snuck in again and Dr Google is always happy to add fuel to the fire.  There is a perennial balancing act between cautious vigilance for worrying signs or symptoms, and over reaction.

I am enormously grateful for my regular checks, I must emphasise that.  However, inherent in the checks is the fact that there is always the possibility that they reveal something sinister.  That is why they happen, after all.  And there is nothing I can do but clench my teeth and go through the range of tests and examinations required and wait patiently for the wise words of the Drs W and W2.

So I have no choice but to hold on tight for the coming couple of weeks.  And trust that after that I will not need to be kept on hold any longer.