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.

Advertisements

In the Dark

There are not many times when I am silent on this blog and there are usually predictable reasons.  Firstly lack of, or slow, connectivity, which can happen here fairly regularly.  Or being out of town and being caught up with other work and activities.  Or, when something happens to worry me, like the wirple and I retreat into a shell of introspection and fear.  It might even be hidden and disguised underneath a chirpy upbeat post.  But I tend not to open up about whatever it is until after I know what it is about.

I returned from my field trip two weeks ago, tired, in need of a good hot shower, and with a standard issue stomach upset.  But that was insignificant. I felt inspired, motivated and refreshed from my visit to projects and communities.  It is an enormous boost, both personally and professionally.

So when, two days after getting back I suddenly developed severe pain in Twang Am and right across my upper chest, I was not happy. And let’s be honest, I was frightened.  The pain was horrible overnight and I resorted to taking pain meds which is something I tend to avoid for some reason, unless pain becomes really troublesome.

The past two weeks has seen me go through a time of pain, fear and worry and now that it appears to be easing, I feel that I can “come out” about it.

It is not clear what triggered the pain, even though the onset was sudden. I had been rattling about in the field, sitting for protracted lengths of time on floors, travelling for long hours on very bumpy tracks and in and out of boats and when that is coupled with an old lower spinal fracture from many years ago and fragility of upper chest following radiation and surgery trouble arises. I tend to compensate for the old fracture when I am sitting on the floor and find it uncomfortable to sit cross legged for too long.  This means that I often tend to lean on the other side, legs bent underneath me and taking all the weight on the opposite arm.  And that arm happens to be Twang Arm.  It looks as if Twang Arm has decided that it has been a bit on the quiet side for a while and it is time to squeal.

I consulted a different Doctor, Dr O.  Sadly (for me) Dr H has been posted to another country as part of an Asian Doctor shuffle and our new Doctor had not yet arrived.  But I know Dr O well, and he looked after me during the lost pneumonia days.  Whenever I bump into him in town he always comments on how good my hair is looking, considering I was completely bald when I first consulted him.  Appointments with Dr O are always fun, as his office is adorned with a variety of Tin Tin pieces of art. He examined me, and immediately diagnosed a problem with my thorax, probably as a result overcompensation for the older fracture.  He also noted some swelling on Twang Arm and thinks that it could be a touch of lympoedema.

But of course there was a not so hidden agenda item.  We both knew the reason why I was so frightened about this pain.  I told him where my mind had gone and he reassured me that this does not look like bone mets.  There, now I have said it out loud.  Dr O described the pain very accurately to me, and said that it was highly typical of thoracic pain.  I asked in at least three different ways about it being connected to Breast Cancer and in at least as many ways back, be told me he did not believe it to be connected.  He prescribed me a heap of painkilling drugs, including a shot in the rear and told me that it should improve considerably in a few days.  If it did not, then it would need further investigation, ideally through MRI as X Ray would be unlikely to give enough detail.

And of course that was very reassuring.  I left the surgery clutching my bags of meds and a tender rear.  But although it was reassuring at one level, I can’t say that my mind was immediately relieved.  I needed to see if the pain would subside, and if it did not, well it would need to be looked into.  And that took me to another whole swathe of fear.

Having an MRI is fine, but we all know that it would show up any nasties lurking as well as thorax or other problems.  And that is the thing.  It is not just about investigating that particular pain, it is the fact that I would need to prepare myself mentally and get my head in a space to handle whatever results it might show.  And that is what I find so hard.

In the days following the appointment with Dr O I took the pain meds religiously and it is hard to say what happened with the pain because it is hard to know what effect the pain meds were having.  By the weekend, I came to the end of the course and moved onto no pain meds.  The pain was still there, and still painful but it is hard to gauge the level of pain when it had been so severe before.  But it was certainly better than it had been, even if not as dramatically improved as I had wished for.

And now a week later, I am in much less discomfort.  The thorax pain is greatly improved, and tender now rather than take-your-breath-away agony.  However, Twang Arm is not so improved.  The thorax pain made it painful to swim so I rested for a few days until it felt that swimming was not aggravating it.  And it is clear that Twang Arm took full advantage of that time to crank up its discomfort.  There is not a great deal of visible swelling but it is very uncomfortable and I will need to get it checked out and get a plan of action to tackle its attack head on.

But at least my head is in a better, less dark space.  Following diagnosis we have a “two week” rule.  If there is unexplained pain or other potentially worrying symptom, that goes on for two weeks without improvement then it needs to get checked.  I saw Dr O almost right away due to the pain levels, and now I am at the two week point so it seems a good time to test the rule.  There is clearly a great improvement.  And as Dr H told me, a useful bench mark is the fact that “cancer pain and symptoms generally get worse not better”.

This darkness transports me right back to the time soon after diagnosis and the overwhelming feeling that something monumental had shifted in my world. I felt as if the certainty of the daily sunrise was a metaphor for the assurance I had had of my physical health.  Being confrontd with my mortality revealed a fundamental shift in my world.  This new cancer world felt akin to a world where the sunrise and daylight warmth were but memories.

In our world, the sun rises every morning.  It never fails.  We know we can completely rely on it.  We can be absolutely confident that the night sky will lighten and that the sun will appear over the horizon.  We can even be reasonably sure what time it will rise.  And moreso, we know it will do so every day without disappointment.  Some days are sunnier than others and we  can see the sun and that it did rise.  Some days are cloudier and the sun is not itself visible.  However, the very fact that it is daylight tells clearly that the sun did indeed rise.

So just imagine, if one day, unexpectedly the sun doesn’t rise.  The minutes tick towards the due dawn hour and the sky doesn’t lighten.  Can you imagine the disbelief as the sky stays stubbornly dark and realisation sinks in that the sun is not going to rise?  The world shifts into a dark and cold place.  Everything changes.  Everything fundamental which we take for granted suddenly shifts.  There is no daylight, no warmth, no growth and the colours all change.  There is not enough power and energy to illuminate our lives and maintain food sources. Humans are resilient and creative beings, however, with a strong urge and will to survive and with human creativity and incredible technology at our fingertips.  After the initial shock we can imagine that ways are developed of dealing with and adapting to a cold, dark world.  Life somehow continues.  Daylight and sunshine are but memories and we think with regret how much we took them for granted and lament that we did not value them more.  Despite the efforts to adjust and adapt though, life can never be the same again.  It can never go back to the way it was before.

That is obviously an extreme and dramatic analogy, and massively oversimplified.   But there is something about a cancer diagnosis that felt very similar to me, however. Hearing those words “highly suspicious of cancer” shook me to the very core of my existence.  The sun at the centre of my universe had changed and my world suddenly looked very, very different.  Of course I would cope though. I would readjust, I would recalibrate.  But I could never go back literally and figuratively.

This post diagnosis life does have its dark moments, with many prompts such as signs and symptoms which worry us, the fear of recurrence, persistent pain, the discomfort and restricted movement of Twang Arm, friends with metastatic cancer, the physical and visible scars of the treatments.  It is not a case of wallowing in this darkness, but it is important to know it is there and navigate our way through it as best we can.

This is one of the reasons my morning sunrise routine is so important to me.  It helps me to retain that sense of optimism through a very evident physical display of light and warmth.  And while my mind might not be completely freed from these black thoughts, they have been considerably weakened.  If the New Year brings continuation or worsening then I know what I need to do, but for now I am focusing on that improvement and making plans for a Christmas adventure.

A rash promise………

……….without the promise? 

That’s a bit how life feels at the moment.  All rash and nothing much else.  I am still really cross and upset about this latest twist in the gecko’s tail (tale) and that is not helping.  The timing is rotten in that it is the last thing I wanted or needed at this stage in my path towards recovery and healing.  However, it could have been worse – the thought of shingles while on chemo does not bear thinking about…………….

We are now over a week into the shingles experience and it is bearable, if unpleasant, uncomfortable, irritating and painful.  I got a bit worried on Monday when new formations seemed to be springing up in a different area as that made me concerned about the virus becoming generalised rather than the affected nerve area.  Then it stopped and those areas have not developed so I HOPE that it was just my skin being really sensitive and irritated rather than a wider outbreak.  The affected area is on my upper arm, upper chest and underarm on let’s call it the “good” side – though we all know what that is a euphemism for!  The underarm area is the most painful partly because that is apparently where the affected nerve is, and also because my skin and those tender sensitive spots rub against either other skin or clothes – or both!  So now Twang Arm has an accomplice!  (Must be laughing up its sleeve – hmmmm)  I am not allowed to swim until the rash dries (lovely) so both arms are giving me a hard time.

The whole experience was not helped by the discovery of a small lump on my neck at the weekend.  Any little bump or lump now brings a renewed stress as it can be a sign of spread or recurrence.  My stomach turned over, and I knew I would have to get it looked at, probably need to get to Bangkok sharpish and the dark thoughts of prognosis and spread take a hold in the mind.  When I checked it the next morning it was considerably smaller!!  PHEW!  It has now disappeared altogether.  It was obviously a mosquito or insect bite, or heat rash and not a new tumour!!! It just shows how alert we must be to any change or sign which could be worrying, and how much we still walk on a knife-edge even in this post treatment phase.  The whole matter of being a cancer survivor but not “cancer free” as such is a strange one (watch this space for more on this) and one which I am trying to get my head round.

For now though, my focus is on banishing this wretched unwelcome visitor – GET LOST, SHINGLES and let me get on with my recovery!!!