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.

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19 thoughts on “In the Dark

  1. What an outstanding post. I can relate to not wanting to verbalize or give life to a notion before being ready. Life after diagnosis is never the same, but it can and has been better in many ways. An excellent book, Feel the Fear and do it Anyway, http://www.amazon.com/Feel-Fear-Do-Anyway/dp/0345487427/ref=sr_1_1?s=books&ie=UTF8&qid=1324250128&sr=1-1 is one of the best books I can recommend. I love your optimisim, it is what draws so many of us to you.

    • Thanks for your comment – yes, that’s the thing isn’t it, life is different. I shall look out for the book, it sounds very helpful. Thanks for your kind words.
      P 🙂

  2. P,

    This is outstanding. You’ve captured the essence of all of it. Not wanting to say anything….. it’s as if verbalizing the fears will make them come true. I’m so glad the pain diminished. A few months back I had “unexplained falls” ….. Lasted over the span of a weekend… best friend said, “MRI” and I said, “not even calling the doctor” but man, I was PETRIFIED…. I hear you loud and clear… This is the part of cancer that most “outsiders” don’t get.

    Love,

    AnneMarie

    • Thanks for your support and for validating what I have been feeling. Like you, I just can’t express that utter fear associated with tests, even tests for other things. Just in case…………

      It is true, I think, for people to get this unless you have heard the “you have cancer” words but it really never goes away. It is something we have to live with and manage.

  3. How beautifully you have expressed the post-cancer blues. Life IS never the same again. I’ve experienced that on multiple levels, including physical, spiritual and emotional. Cancer has invaded the essence of who I am. But I’m not about to let it defeat me. And the sun WILL rise tomorrow. I’m counting on it.
    XOXO,
    Jan

    • That is true, Jan – these are on so many levels, each acute in their own way.

      The sun did rise over here and I have sent it on westwards – and I will do the same tomorrow and the next day too 🙂
      P xox

  4. Oh, dear Philippa, what an eloquent post. I’m sorry you have been enduring this in silence, glad you brought it to light to share with us. We all relate so much to this post-cancer darkness. No matter how much we laugh & have fun & enjoy life, since cancer, there is a loss of feeling carefree that can never be recovered, like a loss of innocence in its way.

    I hope your pain subsides, that swimming puts you to rights again, and that you can quiet the fear again.

    • Oh thank you K – that is it. No matter how much we smile, laugh and live life to the full, there is this underlying felt that we just can’t take it all for granted. I don’t think it is being negative either – it is a kind of acceptance of this new reality.

      Thanks for the good wishes – I am back up to my usual 40 lengths and that in itself feels good. Twang Arm is painful but I am sure that swimming will weaken its nonsense 😉

      P 🙂

  5. Thank you so much for sharing this and for articulating what so many of us wrestle with on a daily basis. I hope the pain continues to abate and your fears subside again. Big hugs to you. Terri xo.

    • Thanks Terri – yes it is a constant tussle, isn’t it? Something we have to manage it and attempt to control it so that it does not control us! Thanks for the wishes – the pain is lessening, I am sure. It has to – I have a Christmas adventure lined up for the weekend!! Big hugs and hope to see you next month xox

  6. I too am sorry Philippa that you have suffered all this in silence, and that you’ve been thrown back into the realm of doctors and fear that returns….. I understand exactly your feelings, I think ‘we’ all do, those who’ve been to the scary places.
    Hope pain retreats and twang arm too and that swimming returns you to you.
    Best, Sarah

    • Thank you so much for your kindness and that understanding, it makes it a far less lonely place.

      The swimming is bringing me back for sure, I have got back to my usual daily 800 metres now and the pain is so much improved. And only a few days to my next adventure, it must be time to re-touch the toenails 😉

  7. Oh Philippa, what an eloquently written post. Like others have said, I’m sorry you have been living in fear of late. So many of us know what that’s like, me included. I’m glad your pain is feeling a bit better. I’m glad you have “quieted” your mind. We can never go back can we? As you know, I recently posted on that exact thing. And you’re so right, it’s not about wallowing in the darkness, but rather acknowledging it’s always there so, as you stated, we can navigate our way through it. Perfectly said. Thank you for writing this.

    • Thank you for your support – yes I really identified with your post. And thank you too for highlighting that sentence, I think that will be quite a useful one to hold on to.

      Thanks and very warm wishes to you

  8. Wonderful blog Nancy I understand as has been 2 years and I am still having terrible pain and swelling in left breast with lymphedema. But no one can tell me what is wrong. When I say I want the implants out they look at me like I’m crazy, but I’ve been to 30 Dr.’s and they cannot tell me what is wrong. Just that one breast is twice the size of the other from swelling, not not pleasant can hardly move my left arm. I am supposed to exercise but cannot because the pain is too severe. I don’t know what to do anymore

    • That sounds dreadfully painful and distressing. I know that swimming helps me, but my lymphoedema is mild at the moment. I know what you mean about that vicious circle – knowing that exercise helps but being far too painful to be able to do it. I wish you speedy resolution to this.
      Very warm wishes
      Philippa

  9. I was on the edge of my seat reading this! So sorry for your pain, and even more sorry for the lymphedema and worry. Fingers crossed that all three subside and you can get on with the Christmas adventure.

    • Thank you – it makes such a difference not being alone in this. The pain is getting better daily, which makes it easier to swim and that perceptibly helps the lymphoedema. So that is all good 🙂 And the Adventure is set to start on Friday. I can’t wait! It will be a little gentler than planned but there’s nothing wrong with that.
      Thank you and wishing you a lovely festive season
      Philippa

  10. Pingback: Closing Out Another Year @ Nancy's Point

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