Lymphoedema? Seriously? Life following diagnosis is just not that simple……

Recently many changes in my life have been underway. One major change which has impacted significantly on me had been the closure of the place where I have been swimming in the mornings. I knew this would be tough, but it has had even more impact than I had expected.

The facility closed to members on July 1 but I was soon on home leave. Furthermore, rainy season always disrupts swimming plans. Every night my ear is always keenly listening for the sound of rain through the sound of the fan. If the rain is heavy, the swim is postponed. Sometimes a full week of postponed swims passes in rainy season.

yangon monsoon

 

Aung Min Gaung River 1Now that the rains are starting to abate, I should be able to swim more often. I need to make plans.

But the gap this year has been too long. Very few swims in too many weeks.

Over the past weeks, I have also been experience increasing pain in my left arm. Twang Arm. I mentioned this to my Doctor here in Yangon and he told me exactly what I did NOT want to hear. What I had not even told myself.

Just a few weeks before the 6th anniversary of my mastectomy and the grand removal of all lymph nodes in my left arm I  developed lymphoedema. These are not my arms, but a stock image of what it looks like.

lymphoedema

Seriously?  Yes, seriously. Sad Face. Angry Face.  ARE-YOU-KIDDING-ME? face.

I am pretty certain that there is a direct relationship between the lack of swimming and the intrusion of this unwelcome bonus condition.

So I am on a quest. As the rains abate, I am seeking out another option. You have to factor in a house move to my recent changes, so I am also testing out new geography and facilities.  I have already checked out one place and had a test swim. This is not quite so easy to get to, but it is a possibility. There are two great pools, a 30 metre and an 33 metre pool. I do not think there are any kingfishers and it is a great deal busier but that is life.

I have always been convinced that the almost daily swims from very soon after surgery, really played a part in keeping lymphoedema at bay. Now I am going to see if I can reverse this and at the very least prevent it from getting worse. It is mild at the moment, and I must stop it from getting worse. Oh and does anyone have any idea where and how I can get a lymphoedema sleeve in Yangon?

lymphoedema sleeveAs October advances with its array of messages around Breast Cancer, I want to add my own message, which is “it just isn’t that simple“. I am happy to be living with NED and want to stay that way, but life after diagnosis just is not that simple. Lympoedema is just one more bonus in the post diagnosis life, as I have discussed before. Thanks but no thanks cancer, indeed.  These bonuses include:

  • A digestive tract which remains sensitive following the ghastly gastric effects of chemo.
  • I have difficulties with memory too, my personal memory card is none too reliable and has particular dislike for. This is linked to  “chemobrain”- a level of cognitive impairment “thanks” to chemotherapy which is now more recognised and understood to be very real.
  • The pulmonary embolism which tried to get rid of me in 2012, and for which I still have to take blood thinners and undergo regular checks.
  • The failed thyroid, which again needs daily medication.
  • Peripheral neuropathy in toes and fingers. Not severe but enough to affect mobility and make me walk clumsily to make others notice. Enough to make me trip and fall too regularly.
  • Brittle and constantly breaking nails
  • Highly sensitive skin – which cannot tolerate sticking plaster or bandaids (depending on the part of the world you come from 😉 ), and which can sense the presence of a stray hair through several layers of clothing. This includes the extremely sensitive soles of my feet
  • Excruciating night time, and other time cramps.
  • Last and in no way least, is Twang Arm which remains seriously corded and which is now clearly laughing up its lymphoedema sleeve.

Again, I need to respond by stepping up my game and squaring up, no matter how exhausting this is.

I am not afraid to shout out that I HATE cancer, I HATE the way it continues to sneak in surprises and knock you when you are still getting getting back to your feet.

Life after a diagnosis of breast (or any cancer) just is not that simple.

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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.