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.

The Headlines

The detail is going to take a little time to post, so if you want the headlines from today’s extensive “Hunt the Suspicious Signs” activities, please see below:

N E D

 

I am relieved, but exhausted, and there are some little whatsits to follow up and keep an eye on.  And oddly, I feel more like weeping than I have throughout this whole year.

 

 

 

Intrusion

I was sitting in Dr W2’s office and he was showing me something on his computer screen.  He explained quietly (not like him!) what was on the screen, but I could not understand what he meant.  I asked him if it meant that he was worried about the cancer beast making a reappearance (ok I didn’t use those words, but that was what I was wanting to know).  However, I just could not understand what he was trying to tell me.  Then he changed the subject and said he would take out my port the next day.

Then I woke up in a cold sweat, surrounded by the remnants of a very vivid nightmare!

I have to return to Bangkok next week for the first of my 3 month check ups and I know I am not looking forward to it.  Let’s be honest, I’m dreading it.  To find that it is intruding in my dreams, and in such a lucid fashion, is not welcome.

I’m not so worried about the procedures – I know the needle lady will get a fair share of blood from my weary veins, and I know I will be prodded and poked.  I’m not looking forward to it, and I know I will be my usual cowardly self faced with the needle.  I also  know I will either have my port flushed or removed and that I am pretty nervous about.

This is not what I am most afraid of though, I realise.  What frightens me most is that the Doctors see some sign of concern, and not the NED (No Evidence of Disease) I crave.  And just in case that fear was not abundantly clear to me, the night time monsters have decided to spell it out in the form of these scary nightmares.