There is an unusual breeze in Yangon today. The leaves are whispering, throwing decayed leaves, which had been sleeping undisturbed for months, down to the ground. There they gather in little bundles, stirring as each new gusts sweeps over them. Little blossoms on the tree promise mangoes in the coming weeks. New frangipani buds reach up towards the sun, gently watched over by sibling petals new to the world. The air feels heavier, as moisture gathers and the afternoon heat builds.
This blog started life very much as a breast cancer blog, in its own discrete space. Gradually it has morphed into a “life and work in Asia with the cancer thing thrown in” blog with more talk about life and moments here than previously. I realise that the past few posts have in fact contained “no talk about cancer” since the last round of checks in late March. And that has to be a good thing. It shows that cancer has a space in my life (unwanted obviously) but that it is not “my life”. Life on the blog has been about Water Festival, changing seasons and the very exciting Dragonfruit news. But that does not mean that cancer is not in my mind and recently I read an article which really resonated.
The writer articulates how she thinks of cancer every day, more than three years since diagnosis. It is a wonderfully balanced article and sets out the ways in which cancer filters through, and not necessarily in a “gloom and doom” way. And that is why it resonated so clearly with me. If we think about cancer, it is not necessarily about fear but it is also about change, adjustment and loss. But there is a perception that to think of cancer frequently is unhealthy and negative and I realise that it is important to emphasise that is not necessarily so.
Similarly to the writer, I am reminded of cancer as soon as I wake. Firstly I lean over to take my synthetic thyroid before I get up to go and put on my swimsuit, stuffing my prosthesis in the left side. That’s my routine. I am not filled with fear or grief, but it is a nuisance and uncomfortable. How can I not be reminded of cancer? Even the act of swimming and cycling in the morning is motivated by the knowledge that I improve my odds with regular exercise. So before I start my day, there are Big Cancer Reminders right in front of my nose.
Cancer is somewhere in my mind when I make plans, particularly holidays or visits. I find it extremely difficult to commit to anything around the time of the six monthly checks and once I pass those milestones, my diary and planner suddenly spring to life. I was diagnosed in 2009 and dates far into the future felt beyond my own lifetime. I didn’t even realise that I thought to myself “well, I probably won’t be here to see that” when the announcement came that Rio would host the 2016 Olympics. But I did, with a pang of something akin to mild regret. By some cruel quirk of fate, that announcement was made the very day I met my surgeon for the first time and he told me that the masses were highly suspicious of cancer. Now as time moves on, even the Tokyo 2020 Olympics do not feel quite so unreachable. Yet still I take nothing for granted. There are a lot of milestones on the cancer side of things, never mind other ways that I can be felled.
I am reminded of cancer as I walk gingerly, picking my way carefully with toes awkward due to residual neuropathy. Perhaps it is not cancer as such on my mind, but there is a firm link to chemo after effects and everyday mobility.
I am reminded of cancer as I prepare my weekly cocktail of medications, counting the days and making sure that the alternate doses of warfarin, 5 mg one day, 6 mg the next, are correctly calculated, looking at those innocent little Femara pills, which are so costly and which cause so many unpleasant side effects. It’s not being negative. It just is what it is.
I am even reminded of cancer when I reach into the kitchen cupboard for a tea cup and have to use my right arm because Twang Arm can only get there if I am on my tiptoes.
In fact I cannot count all of the reminders, and I do not need to. It is clear that the invasive nature of surgery, effects of treatment past and present, never mind the risk of recurrence, all contribute to visible and less visible reminders. The critical thing is to manage these and adjust. And for it to be understood that I am not being negative or tempting fate. My thoughts are valid and my fears, when they come, are valid too. And sometimes I am just really grumpy that I have to wear a prosthesis at all, fed up that it irritates my skin in a way that a natural breast never does and I just want to toss the wretched thing into the bin. Or I am frustrated that I always have to wear a high neck camisole vest to hide the scars. Everywhere I turn, it is staring me in the face.
Yes, the reminders are many and varied and essentially constant. How can cancer not be on my mind daily? But that does not mean I cannot and do not dream of being an old woman who wears purple! I have every intention of being that woman!
What if I were to tell you……
What if I were to tell you, how scared I get.
What if I were to tell you, I think about it every day. At least once. Though most days, so many times I lose count.
What if I were to tell you, it doesn’t get better. Not really. Just different.
What if I were to tell you, it makes me feel a hate so strong it stirs fear in my soul. Fear of my own hatred.
What if I were to tell you, I will never be the same again. I know.
What if I were to tell you, I wake in the night, wet tears reminding me. When I thought I had forgotten.
What if I were to tell you, that every twinge, every hint of pain brings a sweeping new dread.
What if I were to tell you, that hearing it is my fault ignites a fire of anger in my gut.
What if I were to tell you, it is just not as simple as “moving on”.
What if I were to tell you, that long after all around me have forgotten, it is my first waking thought.
What if I were to tell you, that once you hear that word, the mirror shatters. The life you knew evaporates. Replaced by a parallel, silent, world. One built on assumptions.
What if I were to tell you. And you were to hear me.
© PCR 9 January 2013
Amidst all this bloggerly pondering, overhauling and refreshing, I had an idea yesterday.
Before I describe the idea, let’s rewind to the overhaul, and particularly to the image at the background of the new look blog. It took me a great deal of identifying, selecting, experimenting and painfully slow uploading of images to serve as the background image. The one I finally selected, I was very happy with, even if you could only see the edges. Oh, but choosing only one was so hard, and when I look at many other blogs around me, with such a variety of beautiful images, I felt sad that I could not put all of my favourite images as the background. And then I stopped. Why can’t I? A slide show would take up too much memory and be painful for slow-downloading environments which are more the norm than not in this part of the world. But what I could do would be to develop a regular kind of “feature” where I could change the background picture, and at the same time display the image (in full since only the edges which are shown as background image), and links to any posts which relate and more images of the same kind. Now wouldn’t that be a fine way of expanding the content of the blog in a way which truly reflects its purpose of telling the story of the “Life and work of a Scottish woman in Asia – with the added complication of Breast Cancer thrown into the mix!”? Well, let’s give it a try and see…..
So I have changed the background image 🙂 The new image I have chosen is from my visit to Timor Leste in February which I wrote about here along with a selection of photographs of the visit. And I propose to change the background image, regularly (depending on connectivity) along with a post with the picture itself and giving a bit of the story behind it.
My next step was then to share and describe the first image which I had selected. That plan changed. It was late in our day, Friday, when I read Marie’s challenge in her return to the blogosphere. Her challenge is simple and beautiful. We are challenged to open our eyes and appreciate our surroundings, and share the images from those wonderful everyday little things.
And that is where the synchronicity comes in. Not just in relation to the images themselves, but the very image which I had painstakingly selected for the first background of the revamped blog look is one of my favourites for the very reason that it is a simple picture of an everyday wonder. Marie challenges us to share our images on Sunday (tomorrow) so this post is to give the backstory and pave the way for the image which (coincidentally I had already uploaded for this post) for me truly represents a celebration of the ordinary.
And that will appear here tomorrow, with a link back to Marie’s challenge post.
Perhaps it is because I have just returned from the scary pulmonary embolic experience and want to refresh my take on things. Perhaps it is because it is that time of year when you want to clear out old stuff and bring in new. Perhaps it is because I feel as if I am moving into a new kind of phase, and need to clarify my mind and direction. Perhaps it is a bit of all of these.
Whatever the reason, one thing is clear. I very much feel the need for an overhaul. And more than the physical overhaul I have just been through.
As a start, I have been playing with the “look” of the blog. I have had a hankering to do this for a while but was afraid (being a very non techy soul) of ruining my widgets. There is nothing worse than ruined widgets in this day and age! I was particularly afraid of losing my world visitor widget which continues to give me inordinate levels of pleasure when I see a new flag or a new dot on the globe. That would effectively wipe the gecko’s passport clean, which would be devastating. The blog has reached more countries even than Hillary Clinton’ in her record breaking period in office. ” Since becoming secretary of state in 2009, Ms. Clinton has ….. travelled to 102 countries ………. according to the State Department.” And in a shorter time span, given that the blog has been visited in a mind-boggling 148 countries since it was installed in April 2010! So losing my widgets would be nothing short of disastrous when choosing a new “look” for the blog. The tinkering may continue a bit as connectivity is slow which means that it is time consuming making visual changes.
In parallel with the visual side of the blog, a great deal of thinking has also been going on. As well as a fair amount of reading of fellow blogs and reflection. The thinking has yet to be transformed properly into cohesive thoughts and then words on the page. But it is in process and will appear here very shortly, as long as my non expert finnicking does not result in a disappearance of all things gecko into the cyberspace without trace!
It seems I am not alone in overhauling thoughts on the meaning of life and blogging…..
“Do you think of Breast Cancer every day?” was the question posed recently on a BC friend’s blog.
It was a very thought provoking question, and timely as it came at the start of my landmark days, the prominence in my mind as I approached my Cancerversary, and of course the prominence of pinkness of Breast Cancer Awareness Month.
My instant reaction was that it is not whether I think of breast cancer every day, but rather how often I think of breast cancer in a day. I have no idea, but I know it is at the forefront of my mind probably too much.
It is a bit of a puzzle to work out what is a healthy level of reflection, and what amounts to unhealthy obsessing. Of course, I believe that my own ramblings and rumination are healthy but I can also see that it is not a good thing to allow the cancer beast to dominate my mind quite so much.
I think that the reality is that it is not so much that I think specifically of Breast Cancer frequently. It is moreover that I now see everything through a kind of Breast Cancer lens. Along the lines of “same, same but different”, I am living in a different reality, (often termed the “new normal”) and everything looks different through this lens. It affects everything you plan and try to do and means that much has to be modified. As many of these changes become more a part of life, the act of modifying becomes more automatic but the changes are there and things are different.
For some things the lens is very obvious. For example, I can’t think of the coming weeks without feeling the fear of the Big Check and having the inability of making any firm plans beyond that. For other things, I do not specifically realise I am seeing things through the lens but it affects what I do, such as what I wear, making an extra effort to swim or join the Pilates class even when I am tired, choosing what I eat, adding a squeeze of lemon to almost every glass of water I drink and even arranging the pillows as I climb into bed.
In some ways, the lens is a good thing – perhaps a bit like a metaphorical medical kick in the backside! It reminds me of the importance of lifestyle choices and the impact each one has. It spurs action instead of inertia. Sometimes it is a block, and prevents me from making decisions or plans. It has an advocacy refractor and I find myself lobbying other women to make sure they screen and self examine. And sometimes the lens has a very emotional character of sadness and nostalgia, when I think back on how life has changed, how much I took for granted and how much has changed for ever.
One thing is sure about this lens. It is always there. Once placed over my vision, it will never and can never be removed, even if I do not always sense its presence. I need to try and use it to my advantage as far as possible and reduce its ability to distort my view and cause anxiety, disruption and regret.
I am sure I will continue to think regularly of Breast Cancer. It is too significant to be able to imagine a time when it fades from deliberate thought. I hope, though, that in time I will think less frequently of the immediate disease and focus more on a helpful and healthy use of the Breast Cancer lens.
In Thailand something you hear and see often is the expression “same same” to describe anything resembling something else. I have often heard it used to persuade someone that something is just as good as the original (Rolex, fake Rolex for example – same same). There are t-shirts with variations of how it is heard and even a guest house called the Same Same Lodge. It always makes me smile when folks comment on hubby J’s resemblance to a Thai almost always with “you, me – same, same ah?” Used just as frequently is the potentially puzzling “same same – but different”. It is not too obscure though and is used often to describe something fairly similar to something else. But a little different, obviously!
How fitting that life changed so much in the land of “same, same”.
At the beginning of 2010 I remember thinking through how much life had changed, how much would never be the same again , and some things which I hoped would perhaps be similar to those pre-cancer beast days. It is interesting to look back at those lists and see if I am indeed settling into what is often termed “the new normal”.
Things that really have changed for good
• Bra shopping!! As anticipated, this is a whole new experience. Choices are greatly restricted and rely on proper fitting – no buying off the shelf! Happily from a Scottish perspective the cost implication has not been quite as much as I thought it might be, but I do wish there were front fastening options in the shops!
• My left arm. Oh dear. This is not good. Horrible Twang Arm is still causing me grief. It hurts, movement is still severely restrained and despite the fact that I swim regularly and exercise it, I don’t honestly feel it is really improving much. Perhaps when rainy season is over and my swimming is not so disrupted, that might make a difference. The numbness is definitely reduced though. One thing is for sure – this battle of nerves and determination is set to last a long time.
• Health and travel insurance. This is something which continues to really worry me and I need to stop putting off the need to research the implications.
• Using a computer. This has not been as bad as I had feared and Twang Arm has coped well with a return to office life. However, too much time on the computer does aggravate it a bit which is something I need to balance carefully in this technology based, online world.
• My wardrobe. Well, the wardrobe has not changed much and I can wear more than I could a few months ago. But Twang Arm does not like the contortions involved in getting dressed so I tend to rely on clothing which has buttons and is easy to put on. I am able to dress myself now which is progress though!!!
• Being spontaneous. And planning. Although it sounds as if the two are mutually exclusive, it is really difficult to do either for similar reasons. Planning is particularly tricky as I need to work around the 3 monthly checks. Moreover, in the back of my mind (or quite near the front of my mind actually) is the constant fear of another encounter with the cancer beast and a reluctance to plan anything in the further distance.
And the things which felt as they would never be the same, but which I hoped might well be one day………..
• Being able to plan a visit to see family, a night out, weekend away, holiday ……. Taking into account the difficulties in planning generally, I have to say that I now feel that I have much more control here. i have been able to get back to the UK, I have been able to rebuild a gentle social life. Next on the agenda has to be a proper break, whether it is a weekend or longer….
• Having a choice of things to order from a menu. Great progress here!! When chemo finished I asked Dr W2 about foods which I should avoid (or have more of) in order to regain my health and to keep the cancer beast out of sight. He said that research and data often gave contradictory messages, such as the tofu and soy debate. His advice to me? “Live your life, eat healthily and sensibly and don’t stress about food”! So while I eat very carefully and healthily (mostly 😉 ), I have far greater freedom in what I eat, and far greater choice then when I was on chemo. Coffee is again allowed, although I have never been a great coffee drinker. It is nice to enjoy the occasional cuppa or iced coffee. It was be wonderful to have a clear directive on what is good and what is not, but I know that is not realistic, and I have to balance clear nutrition messages with “living my life” as Dr W2 said.
• Scratching my ankle without getting shooting pains under my arm! I have just tested this one! Scratching anything these days is tricky because of the after effects of Taxotere (neuropathy and crumbling fingernails) but it seems that the shooting pains have at least subsided, if not disappeared. I still have supersensitive skin, and my shingles area is particularly prone to itchiness and irritation. But I do think that the Twang Armpit (how gross!) is less squealy and sensitive that it was before. It is still swollen and I find that my latest (well for months if I am honest) worry is that lymphodema sneaks in. It is a risk following lymph node surgery and can start long after you think there is no longer a risk. And it is another horrible thing to have to deal with.
• Walking to work carrying my lunch box and umbrella. We are still in the throes of rainy season here, and rainy season means RAIN! I actually find the rains really refreshing, revitalising and mostly enjoy the energy of the rain pounding on the surfaces, and lush vegetation it brings.
However, it can be pretty disruptive as roads flood, the power goes off, the thunderstorms are dramatic and even with an umbrella you can become drenched in minutes if caught outside when the heavens open.
So walking to work is limited at the moment. It is also something which very annoyingly seems to aggravate Twang Arm. However, I AM able to walk with lunch box, swimming gear and my own bag as well as holding my umbrella to keep either the rain or sun off me. Adding in the laptop bag makes it a bit more difficult but let’s see how the coming months progress and if Twang Arm is further banished. And of course, if rainy season will ever end!
• Dancing. Been there! Done it!!!! Ok, style was pretty “unique and Twang Arm tried to spoil the fun, but “yessir, I can boogie!”
• Sleeping in a position other than flat on my back with a pillow under Twang Arm. I still sleep mostly on my back and Twang arm still sleeps mostly on a pillow. I have tried to sleep on the surgery side which I have stopped for a while as it seems to aggravate Twang Armpit and the numb sensitive area behind my underarm. It is slightly easier to sleep on the port side (or is it starboard??) but it still nips a bit and still pinches the port area. Yeech.
• Going to the hairdresser. Well, I have of course had one visit to the hairdresser, although I know we can’t call it a haircut. More like a bit of a buzz! I am not sure whether to take the frosty locks for a tidy up yet as I am torn between losing precious hair and getting a style which makes me look like a person, and preferable a woman person. I had a very funny moment a week ago, when J asked if where the hair drier was. My reaction was one of irritation that I had left it unused for months – what a waste! Then I remembered why it has been unused!
• Travelling on my own. My trip back to the UK in June really brought it home to me much I had lost my independence. Even more difficult was the loss of confidence in doing things independently. I was unable to carry anything much on either side, found pushing a trolley very difficult and it was impossible to try and get my luggage off the carousel at the airport. I had to ask strangers to lift off my tiny neat little travel bag, to my embarrassment. However, that was 3 months ago and just after radiation. Now I feel much stronger. The fact that I can carry bags to work and push a trolley in the supermarket (and in Bangkok airport last month) is a sign that I can probably manage easy gentle trips.
• The taste of water. Oh it is so good to be able to drink water without it tasting like stagnant drains. Since my last check I have also almost stopped drinking fruit juice because of its high (natural as well as artificial) sugar content and love the taste of fresh, cold water. I still tend to squeeze a bit of fresh lemon but that is not to disguise it anymore, but rather to enhance the taste as well as adding in some fresh vitamin C. My taste buds seem to have recovered well, and I cannot think of any foods which I cannot eat or which taste different. And after a long time I am finally able to eat spicy food again, though I still cannot tolerate very spicy.
• Having a pedicure and massage. This is a funny one. I have had a few foot massages since finishing the treatment, but am still reluctant to have a massage or pedicure. I have so many sensitive spots that a massage does not really appeal to be honest. And my toes are numb and still feel too big for my feet so I do not feel inclined to have a pedicure either. • Looking forward to a trip to Bangkok. I think this will take a while. Perhaps a lifetime. A trip to Bangkok is a trip to the Hospital, tests, needles, scary appointments and fear. There may be the occasional trip to Bangkok which will be for other reasons, but given the regularity of the checks, most travel there will not be something I look forward to.
• Measuring time in units other than 3 weeks. This is an interesting one. While I no longer live in units of 3 weeks, I still find that time and planning is based on the hospital visits. They are the top priority when it comes to planning and other things must fit in round that. Happily the unit is no longer 3 weeks, but a more manageable 3 months which allows a sense f being able to settle and relax more without counting days.
• Being able to dress myself in clothes which go over my head. Work in progress. As I mentioned earlier, there are more garments which I can wear now when I compare with several months ago. I can also dress myself which is great progress. But the clothes which go on over my head? Hmm – must try harder I think!
So looking back over the past months, I can see that many of the things I had hoped would gradually ease have indeed done so, and I am able to feel a sense of “normality”. I know that this normality and life before I was diagnosed are not the same thing at all. Hence a popular term being the “new normal”. But I think I prefer my Thai version of the new normal – “same same – but different”.