Skin deep

Dear people

This is a plea to myself as much as it is to others. This is an appeal to each of us, to pause and think before we judge others, especially on appearance.

I know what you think when you see me, whether for the first time or as a longer acquaintance.  I can read it in your eyes.  I see the belief that I look the way I do because I do not care about myself, I am gluttonous and lazy. I know that look which betrays pity and blame combined. Which cuts into my soul.

I know that I have not worn my years kindly.  But I do not think you know just how much I struggle with that, every time I look in a mirror and each time I see myself reflected in the eyes of judging strangers.

I do not want to have to tell in advance, that I know how it seems. As if I live a life of sloth.  But I yearn to challenge that judgement, and preface a conversation by saying just how hard I push against the forces which shape me.

I will give you an example. I move increasingly awkwardly. Femara is a drug which decreases the probability of my cancer recurring or progressing. For which I am thankful.  How can I not be?  Despite the accumulating side effects which conspire to make my mobility increasingly constrained and painful.  I push myself to get up and move about, despite the pain because I know it helps a little and that inactivity is an enemy. Despite that pain when I rise to my feet and the jarring pain in the first steps, which gradually reduces to an ache and awkwardness.  But I can tell by your looks, that you think my bulkiness is causing this lumbering gait.

I hear comments on my weight and suggestions that I should walk a little. I know that the intent is not unkind, but still I fight back tears. I hate my defensive tone when I try to explain gently that I have cycled five kilometres that very morning, as I do most mornings.  That I have swum half a mile, as I do most mornings. That I am probably fitter than I have ever been since my teenage years. The irony slaps me, knocking me sideways. I know you don’t really believe me.  I know that because, if you see me by chance one morning on my bicycle or swimming, your expression is of surprise.

I can no long walk freely.  My toes have retained that numbness of peripheral neuropathy from chemotherapy. I am frightened of falling.  I stumble even in the house and earlier this year had one bad fall. Those numb toes caught on a paving stone, slightly upturned and I fell heavily on both knees. Those tender, already painful knees.  My confidence has been dashed, and my love of walking is a memory as I pick tentative, cautious and painful steps.

Dear people, I had no idea that there were so many long term effects from treatment which has probably saved, and at the very least significantly prolonged my life. When I learned that my thyroid function had been annihilated by chemotherapy my initial reaction was one of vindication.  Here is a major reason why I struggle with my weight despite being more active and physically fit than I have ever been.  It is not sloth or gluttony.  Zero thyroid function is a very clear medical reason behind stubborn extra pounds. Every morning before my day begins, even before I put on my swimwear as the sky slowly lightens, I have to take synthetic thyroid.  Every day I take this, and will for the rest of my life.  Any hope that this artificial medication would re-shape me was however dashed as the months after this bonus diagnosis and new medication slipped by without any sign of weight loss.  An hour of exercise in the morning maintains a fairly steady or even mildly gaining weight.  Any reduction in activity results in rapid weight gain.  Which does not reduce no matter how active I am.  This is sickening and frustrating.

It is human to judge and to make assumptions. We are wrapped in our social and cultural baggage which nurtures beliefs deep within us. It is also human to smart when we are on the receiving end of those suppositions.judgementI know that I should accept the way I look.  Even my doctor has told me I am doing everything right and that I should try not to be so hard on myself.  That is one part of the question.  The other part is how not to take it so much to heart when others are unintentionally hard on me.

shoesAnd that is the one I can’t crack.  I can rationalise the comments and looks, and can attempt to reassure myself that I am not who I appear to be.  But I can’t stop it hurting.  I can’t prevent involuntary sickening twist-in-the-gut  reaction when yet another person remarks. That lingering sense of sorrow and shame which descends on my spirit. The futility of defending myself, knowing that it just does not appear credible, and minds are already made up.

Dear people, you do not know how much I hesitated to write this. How bare my soul feels putting these words on the page.  How exposed and vulnerable this makes me feel.  How sensitive and susceptible to more judgement as a result of disclosing my innermost anxieties and insecurities.  How uncomfortable about such a self- indulgent outpouring.

We do not know what innermost struggles there are within each individual, hidden by smiles and a seeming lightness of the spirit. Painting a smile and crafting gentle words while the soul writhes in pain takes enormous effort.

do not judge me

To paraphrase a well known saying – let us aim to be kind to others , for we cannot know what private turmoil there is within each one of us.

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Thanks, but no thanks, cancer.

There are so many different ways of handling a cancer diagnosis.  There are more ways than there are people who have or have had cancer, in my view.  As each one of is individual, each approach is unique.  It might be similar to many others, but it is essentially unique.  Why more ways than people?  Because this varies even within ourselves.  Much depends on where we are in the cancer experience.  In the three years eight months and 22 days since I learned I had cancer, I have veered between the “WTF – Cancer??” to “warrior” to “cancer rebel” to “advocate and activist” to “inspiration” and many more.  Each is valid to the individual and to where they are in the experience.  What is not valid is suggesting that one approach is right and another wrong – each must be respected even if it very different to our own approach.

One approach is to see cancer as a gift. Diagnosis of a critical disease does often bring a sense of gratitude and an accompanying “carpe diem” pair of spectacles.  And that is fine, but the carpe diem is as far as it goes for me personally.  Thanks, but no thanks, cancer.

I was in a sound sleep the other night. I must have stirred a little, as I was pulled abruptly to my senses by a familiar tugging and tightening in my calf. Yet another leg cramp was forming. Much as I try to relax the muscles before it spasms, I can rarely prevent the cramp from taking hold.  I know that if I can get out of bed and straighten my leg with the floor underneath then it will help, but lifting my leg off the bed makes the cramp worse.  Sometimes I can put up with it, but other times the pain is so excruciating that I hear animal like noises coming deep from my gut.  It is agonising for me and distressing for hubby J as he is disturbed from his sleep and tries to help me relax the muscle. The cramp the other night was one of the worse I have ever had.  My calf was in a complete spasm and even my foot was locked like Barbie’s, – my toes splayed in different directions.  I tried to move off the bed but was completely unable.  It seemed like an eternity and took a horribly painful manoeuvre to get onto the floor and start to ease the cramp. I was finally able to hobble and the cramp slowly abated.

The spasm had been so severe though, that the pain stayed for several days.  These cramps are a likely side effect of Femara (Letrozole) which I have been on now for nearly a year, following the switch from Tamoxifen.

Throughout that following day, I walked as if I had just celebrated my 95th birthday and was both immobile and incontinent.  My right leg was tender and painful from the cramping and it struck me just now much the Femara side effects have been getting progressively worse too.  I am increasingly stiff, move awkwardly and have pains in my elbows, fingers and both knees.  I yearn to be able to move freely and resent this debilitating impact on my wellbeing and the constraints on my mobility.  The days following this particular cramp session saw me walking very gingerly and awkwardly indeed.

Thanks, but no thanks, cancer.

There have been a number of unwanted “gains” from cancer – we are too familiar with Twang Arm, Captain Paranoia and of course the gaping void and long scar which is where my left breast used to be.  But there are many more.  Some are side effects of current medication, some are the after effects of the various treatments.  They are all unwelcome, but part of life.

Thanks, but no thanks, cancer.

I have a host of unexpected after effects – brittle and constantly breaking nails, highly sensitive soles of my feet, skin which reacts angrily to as much as a wrong look, or sticking plaster or stray hair, a digestive tract which remains sensitive following the ghastly gastric effects of chemo.  I still have the remnants of peripheral neuropathy in my finger tips (barely noticeable but just there) and my numb toes.  The numb toes which were the likely cause of my recent fall in March.  I often trip just walking around the house.  One of my colleagues recently remarked that I was now walking more clumsily.  I have difficulties with memory too, my personal memory card seems a little stale and has particular difficulty with numbers.  Finally “chemobrain”- a level of cognitive impairment “thanks” to chemotherapy which is now more recognised and understood to be very real.

Thanks, but no thanks, cancer.

One post diagnosis gain is the regime of daily meds I have to take.  Before cancer I used to pop one little blood pressure pill daily, to counter the family trait of high blood pressure which hit me suddenly when I hit the age of 40.  Now I have a whole colourful smorgasbord of meds throughout the day, some of which interact with each other, some which have side effects and which require another med.  Sigh.

The Smorgasbord

The Smorgasbord

As soon as I wake, usually around 5.30 am I have to reach for med No 1.  I have to take a synthetic thyroid because I have zero thyroid function.  I have no thyroid function because chemo zapped it into non-existence.  I have to take two small tablets and then I usually get ready to head out for my swim and cycle. Around an hour and a half later, after breakfast I have the next round of treats.  I now take a combination of 2 meds to keep my blood pressure stable.  One of these interacts with the thyroid med so I need to leave at least an hour between the doses.  Very handy if my morning routine has to change for any reason, like travelling, working away or if I were to have a longer sleep at the weekend.  Fine.  In the evening, I have a supper and bedtime cocktail blend of warfarin and Femara.  The Femara has replaced Tamoxifen which tried to do away with me by clotting my lungs with a sprinkling of clottettes.   The warfarin is the other gift from that little embolic episode. And my nightcap is a massive horse-tablet sized calcium supplement to counteract the effects of Femara which likes to deplete calcium from my bones.

Thanks, but no thanks, cancer.

I did not exactly enjoy being on Tamoxifen.  Would anyone? I felt a general weariness and also had terrible leg cramps as well as the legendary hot flushes.  I was glad to wave good-bye to it though and had hoped that Femara might be a little gentler.  After all, Femara and even Letrozol sound like more pleasant names than Tamoxifen, surely?  Unfortunately not.  As I approach my first anniversary since the Femara – Gecko union, I have had to face up to the fact that I am gradually feeling worse and not better.  I have been putting up with joint pain and stiffness which has been gradually but clearly increasing.

Thanks, but no thanks, cancer.

I was due my regular blood draw for monitoring warfarin effectiveness and clottery levels this week, and finally decided just to ask Dr O about the worsening pain and stiffness.  As soon as I mentioned and gestured about the pain he sighed and said he was pretty sure it was Femara.  He said that he has a few patients on Femara and even the way we describe the pains is pretty much the same. He asked me how long I have been on it, and when I told him that I have had 3 years now on either Tamoxifen or Femara he screwed up his face and said that they were truly horrible meds and that he could not wait for me to get to the five year point and have “freedom”!  Which was incredibly encouraging to hear.  Partly the validation that he recognised how draining and debilitating these side effects are, but even more so, that perhaps even after a couple of years, that I might actually start to feel better.  I had not realised that I have been taking this misery for granted and had pretty much accepted subconsciously that it would continue and just get worse.  For ever.  He ran a few extra blood tests – just to make sure that he was not missing anything, so calcium levels, potassium and liver function were all checked.  And very happily, all came back nicely within the regular ranges.

However, he has recommended a Fish Oil supplement to help ease the joint pains.  Another colourful addition to the smorgasbord.  And that brings with it another consideration.  So many of the meds interact with each other they have to be carefully timed and it starts to get really complicated. The meds do not just interact with each other, but also with certain foods.  Warfarin is less effective when you take wonderful cancer-busting greens and other Vitamin K rich foods.  And other healthy foods like cranberry can cause haemorrhaging – all of which curtails nutrition options and takes so much control away from me in ensuring I have as healthy diet as possible.  So contradictory and counter-intuitive.

fish oil

I also ranted on my Feisty Blue Gecko Facebook page that evening, just to see if I was alone and how others dealt with this.  I was again reassured that I am far from alone, and my weariness with the side effects was valid.

So I have to confess to being grumpy and crabbit at the moment.  I am so over this cancer crap, and the fact that I cannot sweep it to the side as if it had never happened.  And that is not beginning to take into the account the whole “No Evidence of Disease is not the same as Evidence of No Disease and this beast will continue to haunt and taunt me”,  but purely dealing with the realities of the here and now of life following diagnosis.

Don’t get me wrong.  I know I have a great deal to be thankful for and I AM truly thankful.  I know I make more effort to value time and carpe the diem.  I still make a “five sticky plan” for weekends, aim to maintain a work life balance as far as possible in this incredibly demanding context of change and more change, and play (subtly I hope 😉 ) the cancer card if that is too threatened.  I have a beautiful morning routine which is largely “thanks” to cancer in that I know that exercise is known to be a factor which can play a part in reducing recurrence.  I have my Wish Bucket full of starfish,  kangaroos and funky nail art, and an update on that is coming very soon too.

I am also planning an escapade.  The year has been one of my toughest, so a little escape for creative and healing time is planned next month.

And of course, cancer gives me HEAPS of material and thought which makes its way into blog posts!

So there are a number of things from the cancer experience which I acknowledge have had a positive influence. And apart from cancer, I have a great deal to be thankful for – living and working in this part of the world being just a starter.

thank you starfish

But cancer?  No, I do not think the day will ever come when I could ever say “thank you” to cancer.

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!