Trans-portation and de-portation adventures

Tis the season to be jolly, fah la la la la…..

Christmas is indeed approaching and there are quite a few signs here in Yangon.  Many more than there were signs of Pink October in fact.  I am in a very different place to where I was this time last year – but that is a topic for another post.

As well as Christmas approaching, the time is also approaching for my port flushing procedure.  Ouch!  Just to keep me from fretting too much about the procedure itself, a complicated logistical puzzle is forming to take my mind off the scary side.

A special kit is needed for the port – it includes the specific port needle, the anti clotting agent Heparin and various other goodies.  We don’t have a kit in Yangon so I have been working hard to try and get one trans-ported from Bangkok so that my Dr can do it here.  It is turning out to be rather messy!

We seem to have got over the confusion about where the kit should be collected from and delivered to.  We have also clarified that the Heparin needs to be kept refrigerated as it is a cold chain product (I have no idea what that means except that it has to be kept cool).  So far so good.

Now, remember that the port is implanted, as in under my skin.  Unlike Teddy who had his on top of his fur, but that’s life!  The whole reason it has to be flushed regularly is because it is connected to my jugular vein and into the heart (yeeech – heebie jeebie jeebie….)  So while I still have my port and while I am not getting chemo infusions this flushing, or cleaning is important.  Dr W2 is still undecided when or whether I can get my port removed, or be “de-ported”.  So in the meantime, I have to organise this “trans-portation”.

So when organising the logistics, I was particularly alarmed then to see the following instruction in the email, for the collection/delivery of the cleaning kit.

“As far we understand from our client, the port is with her ( the address as below).  It must collect from her and bring it to hospital for cleaning and flushing and return back to her”.

I cannot tell you how alarming that is – the thought of someone turning up, somehow prising the port out from under my skin and carting it off to get cleaned at the hospital!  Then bringing it back and putting it back in!  Yikes!  And of course I am keenly aware of the irony that if it was removed or removable then it would not need to be cleaned!

So I am waiting to see what the latest plan is. My Dr goes on holiday soon so I do have to get it done in the next week,  or I would have to go to bangkok.  What an rollercoaster!

These adventures will continue while I still have my port – so I can’t wait until the ex-port has been finalised!

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Barbie toes!

I have to confess, that I am still taken aback a bit by the complexity and sneakiness of the Tamoxifen side effects. The fuzziness creeps up on me and I blame myself rather than the drug. I get frustrated that despite my daily exercise I am not losing weight and forget that it is a well documented Tamoxifen side effect. But the night time cramps? I am in no doubt that the culprit is Tamoxifen.

Last week something must have been going on, some misalignment of planets or imbalance in my diet. Or both. Whichever it was, the result was a series of horrendous night cramps. You know the kind which wake you up with a start? The ones which make you squeal and groan out loud. The ones which sharply snatch your peacefully sleeping spouse from their sleep, thinking there is some dire medical emergency. I have not been too badly affected by the Tamoxifen cramps so far, so when they struck last week I was puzzled about what had triggered them. The first morning they visited, I thought it was a fluke and after hopping about the bedroom trying to loosen the taut muscles in my calf, I soon forgot about them. However, two days later when I was abruptly and very painfully seized from my sleep with a particularly severe onset, I started to wonder what was going on. This time, they were really nasty and clever. As well as the calf spasm, my middle toes joined the contraction party and parted company, deciding to point alarmingly in different directions. I defy anyone to remain silent when under this type of attack. I couldn’t help the cries of pain and no matter how hard I tried to get the cramps to relax, they refused to cooperate. As a last resort, and in desperation I tried to set my foot on the floor to try and lengthen the muscle and ease the cramp. To absolutely no avail. And even worse, I was completely unable to flatten my foot – it remained stubbornly pointed and resisted any movement with a renewed sharp stab of pain. So there I was, with toes like a Barbie doll, prancing around the bedroom wondering why I seemed to have acquired Barbie’s foot and wondering if it would stay like that for the rest of my life.

Happily, the plastic toes finally softened and I was eventually able to put my foot on the floor, gingerly and painfully. Of course it was impossible to get back to sleep – although poor sleeping spouse did manage to nod off again, muttering and clearly re-living the scary Barbie toes experience! I am not sure which is worse – having a wife with only one asset or one with Barbie toes!!

So, Tamoxifen, you certainly know how to make your presence felt. Let’s get one thing clear then – I am prepared to let you into my life, and body, on a very clear understanding. That you work flat out to keep cancer away. If that is understood then I guess I can live with the Barbie toes and your other side effects.

Middle ground

I am in a pretty good place right now.  Apart from kicking myself that I didn’t start this sunrise swimming strategy months ago, that is.

I have now reached the end of the second week of this dawn swimming and cannot believe how good I feel, despite having fewer hours sleep every night.  I am astounded at how much difference there is between an evening swim and a morning one.

I feel as if I have more energy – take that, Tamoxifen!  I hadn’t realised just now tired and fuzzy I was feeling all of the time.  I am still on a bit of a low peep but definitely feeling less tired.  Twang Arm is taking a bashing and it feels as if it is losing its grip (every pun intended 😉 ) – it is less painful and I am able to swim quite a bit faster than before.  More than anything else though, it is a great psychological boost and I find my mood lighter and motivation stronger with this different daily regime.

The timing is good too.  We are in a particularly frenetic period at work and I am finding it hard to keep my promise to myself about maintaining a healthy work life balance and this start to the day helps enormously.

However, I have to remember that I am still in that recovery phase and my body still marked from the ravages of the triathlon hell of cancer treatment.  It is difficult to communicate that though.  In this strange post treatment life, I feel that the rest of the world expects there to be only two states which I can be in – either ill or completely well.  There doesn’t seem to be an in-between.  Yet the reality is that I am physically still very much at an in-between stage.  I am well.  I am pretty strong. But I am not quite fully well.  The punishing months of chemo, surgery and radiation have really taken their toll on me physically.  I still have some neuropathy (numbness) in my fingers although it is improving.  My toes are still uncomfortable, numb and feel stiff and too big for my feet!  I have a horrible kind of deformed toenail where one of my toenails fell off and another is still a gross black colour.  My fingernails keep splitting.  I feel generally sluggish and slightly lethargic, and my thinking also feels a bit slower.  I have the side effects of Tamoxifen to add to that – perhaps that is the main cause of the sloth-like state.  Perhaps I should have a label round my neck which says “handle with care”?

So I feel that I am very much in a kind of middle ground, albeit a good middle ground, which is heading in the right direction.  But a middle ground nonetheless.   I’ll keep you posted on how that ground shifts as I am sure it will continue to do so.