Costly and subdued.

The promised update.

The latest round of checks is behind me and I am breathing out.  That means one thing – that the important tests were mostly fine, and that I can breathe out slowly again.

I have been surrounded by support and care, and cannot express how much I value that.  There is never a time with these checks that you can truly put it all behind you and consider it “done”.  But it is good for now and I am just that little bit closer to NED (the precious No Evidence of Disease) than I felt last time.

My two cancer Docs, Dr W and Dr W2 were both happy and thorough.  My tumour markers remain elevated but stable.  As in almost exactly the same now over the past 18 months, and in fact since the rise which prompted the scary scans in October 2012. So this meant no bone scan this time.  Which was very welcome news! It does mean that there will be a number of scans and extras in the upcoming Annual Big Checks in October. But that is ok, because for now I can breathe out.

My aspiration is for Dr W2 to call me “boring” and I have still to attain those dizzy heights.  Last time he saw me I was “complicated” which is much better than “interesting” but still not boring.  This time I am in a better place in the scale – “expensive”! He asked me if I need more meds, and I said that I did.  I said that I could get some myself, but he expressed concern that they might not be good quality or genuine and I agree that it is better that he prescribes these.  However, that comes at a cost! Confidence that the meds are genuine means that they are also expensive.  And as time wears on, I gather more meds instead of shedding any.  Added to that, I am fighting off a couple of infections at the moment and needed to add an antibiotic to the mix.

medsDr W2 also said that I seemed to be one of a small number of long-standing patients.  I was surprised and he told me that many stop consulting him after their acute treatment, and many return back to their original countries.  So I have some kind of loyalty pass which is rather comforting.  Dr W similarly spoke very warmly with me, offered support to the Yangon Breast Cancer Friendship Group which we are establishing and was generally very encouraging.

It was not all so warm and cosy though.  My endocrinologist was less happy with my bloodwork.  My previously wondrous cholestrol levels have been steadily rising as are my sugar levels.  I am working hard to keep diabetes (which has been in my mother’s side of the family for generations) at bay and it seems that this is not going to last much longer if the trends continue.  I find this so frustrating when I exercise so consistently and eat very carefully.  I showed him my exercise log (ok, it’s a rather obsessive log of how far I swim daily, how far I cycle and how long I exercise for – I find it really motivating).  I find that I exercise between 180 and 250 minutes a week on average. He told me not to blame myself as if there is a strong genetic predisposition then I cannot halt that.  However, I also consulted with a nutritionist to see if there is something I am missing or not doing properly.  With her, I worked through a typical day and exactly what I eat.  She looked up at me and noted that my diet is more healthy than hers!  She suggested a few adjustments – such as reducing my fruit intake and adding some protein to my evening meal.  So I will give that a try.  She also noted that the lack of thyroid function is significant in metabolism and weight issues, even taking the synthetic thyroid which also made me feel better.  But then she suggested I am for a 3 kg loss for my next appointment.  Which totally deflated me.  I feel that aiming for a specific weight goal just does not work.  I struggle and work so hard not to gain, I feel an automatic failure if I cannot lose kilos.  I prefer to ensure that what I do is right and if that leads to weight loss then that is great, but what matters is to eat carefully and exercise.

Ironically, Drs W and W2 (my oncologist and surgeon) were happy to recall me in my usual six months, but the endocrinologist wants to see me again in three months.  Sigh.  A step backwards, it feels.

The ray of sunshine in this though, came from Dr W.  He knows me well and asked me if I still swim and cycle and I confirmed that I do and that this season is perfect for the morning routine.  I told him that there were concerns about my cholestrol and weight and he instantly said that this is well known of Femara.  Which was enormously reassuring and validating, and is very much what I suspected as these issues emerged from the very first checks following the switch from Tamoxifen. And as another friend said “cholestrol is better than cancer” and for sure, it is!  It is not great but the Femara is there to keep the bigger demon at bay.

As I move forward then, I juggle the bonus combo of a genetic propensity to diabetes and high cholesterol, lack of thyroid function and the side effect tactics of Femara. None of which I can do anything about, except continue as I am.

Water music

So here I am, again on the other side of a round of checks.  Again slowly breathing out.  And again subdued. I might not be “boring” but I am expensive so that must make me rather classy – right?

And whatever else I am, I am beyond thankful.

 

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Skin deeper

There has been an elephant in the room, and not one which sits quietly in the corner.  It has been rampaging through the house causing destruction and damage in its wake. I wrote Skin Deep over many days and did not actually believe I would put it “out there” online but as I felt myself sinking deeper and flinching from those small incidents which are on the surface slight, with tears in my eyes I finally pressed the “bare my soul” button.

I do not really know what I expected from the post.  Being honest, I had not thought ahead.  The purpose of writing was to vent and pour out the distress in my heart.  So I was astounded by the response to Skin Deep. As well as numerous comments on the post itself, I received personal emails and Facebook messages and a number of people here reached out with love and understanding.  I had not anticipated the many thoughtful messages reassuring me that physical appearance is not the same as beauty. I have been emotionally overwhelmed and it has taken time to put my thoughts in order and prepare this reflection and learning.

As I read through and responded to the comments, replied to emails, spoke with friends who reached out and quietly reflected, the clearer a picture developed of a whole host of people struggling silently.  So many live with constant debilitating side and after effects and swallow the assumptions that everything is behind us and rosy now. Many of us are silently absorbing assumptions of our appearance, while struggling with a variety of conditions which impact on how we look, so many of which are beyond our control.  I had lifted the lid off some Pandora’s box.

I still feel fragile, emotionally and the wellbeing and appearance issues are unlikely to change.  But I learned a great deal from writing the post, reading and reflecting on the responses and bringing together these thoughts into some key messages.

I am not alone

I am incredulous at the number of people struggling with these interconnected issues, in silence and isolation.  We are dealing with a host of issues – side effects from many meds, after effects from current and previous treatments, disfiguring surgery, pain, destruction of functions including thyroid. We may look well but be living with debilitating conditions, or we may look unfit and unhealthy yet are following extremely healthy lifestyles as far as we can. In summary, as “cancer in my thirties” said in her comment

“many people fail to realize how horrible the side effects of our treatments can be — and how much they impact our lives each and every day”.

Even if I struggle with these, knowing I am not alone somehow helps emotionally and validates these feelings.  However, another side is that very few of us expect or are prepared for such debilitating side and after effects. We should be grateful that we are alive – and of course we are, but that doesn’t mean that this is something that can be wrapped up and put easily in the past when we live it every day.

Far too many are silently living with this.

Intent

I did not intend to make people feel uncomfortable.  My post did not point fingers at any individual but aimed to draw out the consistency of reaction.  I particularly want to stress that I do not for a moment believe that there is unkind intent in many of the comments and looks I experience.  My friend Becky wrote very powerfully of her experience and in particular placed it in the context here.

“Being called fat in SE Asia isn’t necessarily a negative thing. It’s quite acceptable here to talk about people’s size. ……………

In some countries, being told you’re big can be a compliment. I sense it’s not necessarily a compliment here, but rather an observation (perhaps without much judgment).“

It is so important to hold on to this, and try and remember it is more an observation.  The challenge is that of course I come from a context where it is broadly offensive to comment on a person’s weight.  And that is why it hurts.  Purely and simply, I struggle terribly to be on the receiving end without it that stab of pain and shame.

It doesn’t matter how much I rationalise and understand – it still hurts.

Reaching out

I have found that not only writing and releasing these highly personal and innermost thoughts and feelings but then listening to the responses and reactions of others is helping me to process this.  Chronic illness, mortality, cancer and the whole psychological and emotional and invisible side to diagnosis continue in my view to be underestimated even within ourselves.  We are often caught up in our own pain and unable to see how enormously difficult for those around us themselves to deal with life-threatening diagnoses in their loved ones.

Open your eyes

Indeed, I really did not have a clear purpose in my mind when I started on this journey of exposing my soul. I did not expect such a powerful reaction. I think that in the back of my mind, I was screaming silently that I wanted to be heard. To be understood. And not to be judged.

This path is and will continue to be painful.  Yet for now, I can say that I do indeed feel heard. I feel far less alone.  And I feel more understood.  I hope that applies to us all.

The elephant is still in the room.  I doubt if it will completely disappear. But it does seem to have quieted a little and become less obtrusive.