Back down to earth

with a very big BUMP!

I have had a lovely Christmas and New Year break, a trip to the beach, company of lovely friends and now back at work.  My early morning routine has continued with my sunrise swim and all in all, I am feeling well and optimistic.

So why the start of some stomach churning and anxiety?  Because next week, already, my next 3 month check comes around.  Some one has fast forwarded the calendar and suddenly I am dusting down my travel bag, booking my flight and preparing to head to Bangkok for the scary checks.

Now, this might not be the Big Check, but it is still quite a big deal.  First, I will see Dr C – my Radiation Consultant for what I expect to be a fairly quick check.  It is now just over 6 months since radiation finished and I feel that my skin has healed pretty well.  It is still pretty sensitive but I am not sure how much of that is due to radiation, and how much due to chemo, surgery and those wretched shingles.  There is also a question about possible damage to one lung from the radiation.

Then I will have a full on day which will involve fasting, blood tests and big needles and then review and consultations with Drs A, W and W2.  They will be looking particularly at my tumour markers as they have been a bit above the normal range.  That still freaks me out, I have to say.  They will also check and see if they see any other signs which concern them.

And then there will be the port story.  I have been rather reluctant to share the latest port news.  It was due to be cleaned in December, and after a logistical tale, a kit was provided here so that my Dr could clean it.  Unfortunately, the old port was rather uncooperative this time.  It pointblank refused to provide a blood return, despite reinsertions of the needle, manoeuvres to try and jiggle the vein into producing blood, and technical phone support down a continually breaking phone line from Bangkok.  Interestingly, there was no difficulty in infusing the saline and as guided, two small infusions went in easily.  But time after time, there was no blood return.

Eventually and reluctantly we had to call a halt to this fun, and the guidance from the oncology ward was to wait until the next check.

So no chocolate frog, and no sense of relief that the port was once again cleaned and shown to be working properly.  I had a strange sense of disappointment mixed with worry about what could be causing it to be uncooperative.  It could be caused by a “fibrin sheath” which is (from what I understand) an area where there has been some tissue re-growth around the area where the needles connects with the area which connects to the vein.  This would mean that it is possible to infuse fluids as there is a “push” during this process.  However, when the syringe attempts to draw back from the vein, the suction on the tissue causes it to close and there is resistance.  Apparently there are medications which can melt such a tissue growth.  Sounds very appealing.

The upshot of this is that there are a few scenarios regarding the port.  Firstly, and if the tumour markers are not elevated, and if Dr W2 is happy with all other signs, then perhaps he might think about de-porting me.  In some places, de-porting takes place right after the final chemo, and in others the Drs prefer to keep the port in place, just in case.  Just in case, scares the wits out of me, because we all know that it is short for – “just in case we need the port again for more chemotherapy”.  Yes, I know it is sensible to keep it in place, just in case, because it is much easier to take out than put back in, but the underlying questions is – “so, do you think I am going to need more chemo????”  So Dr W2’s decision about whether or not to de-port me is truly loaded and one I am very anxious about.  The double edge of this anxiety is that if get the very welcome news that I can be de-ported, then I have another surgery ahead of me to do so.  I know it is minor, but it is still scary!!

Now de-porting is one scenario.  Another is that for whatever reason I am not to be de-ported this time.  In that case, I will need to have the port checked out.  I am not sure if they will try and do a regular “flush and clean” and see if there is a blood return, and if the obstinacy or fibrin sheath have dissolved.  If it has then I guess that will be fine, though I will have a continual anxiety when it comes to each port flush.  If it is still problematic, then I am not sure what happens.  I have visions of it being flushed with battery acid or some other caustic substance to free up the blood flow.  You can see I am really helping myself here!  If the flush and magic medications to unblock the blockage do not work, then I really do not know what the next step would be.  I think it might involve knives though!

Although the port decisions are preying heavily on my mind, I have the bigger, over-riding concern that the Drs find something that concerns them and which could indicate signs of recurrence or spread.  And please don’t try to reassure me.  The reality is that we have these frequent checks because there IS a possibility and so that it can be spotted early.  I have heard those life-changing “you have cancer” words in the past so I am not reassured by “don’t worry, it will be all right”.  Because it might not be.  That does not mean I am being negative and defeatist – oh no,  not at all!  I am as determined and as pig-headed-stubborn as ever, and will rise again to any challenges that might be thrown in my path.  I just have to have some mental and emotional oomph to be able to deal with whatever comes up.

So here I am again,  preparing for another Bangkok visit and packing a mix of anxiety, fear, gratitude, anticipation and worry in my travel bag.  More than anything, I will be seeking to bring back NED in my little case for the return journey.

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11 thoughts on “Back down to earth

  1. Oh I so understand your feelings Philippa – well minus the port saga that is. Thinking of you and sending you lots and lots of good thoughts. Marie

  2. I had some violent thoughts towards the “don’t worry, it will be all right” brigade! Of course we worry and we have no idea whether or not it will be all right. Thinking of you and hoping that all goes well. Most of all I hope that NED will be travelling home with you. E xx

  3. Oh my,such thoughts do make us long for those worry free precancer days don’t they? I understand about your fear and anxiety. I hope you have an uneventful checkup. Warm wishes.

  4. It is so reassuring that these feelings are familiar to us all! Thanks so much for your wishes and yes, I am thinking NED thoughts. Well, it’ll soon be Thursday and I should know what is what…..

    Thanks so much for your support – it is so helpful to know that we are not alone
    🙂

  5. Oh Philippa — I am with you. It is so hard because we have lost a kind of innocence since hearing the C word apply to us and making it through treatment. You are right. I cannot offer facile assurances. But I can let you know that no matter what, you will be you, and we will be grateful for you. xo

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