The Waiting Room

waiting roomI knew that the word “breathe” was an important one for me this year.  So important, that I do believe that the choice was not in fact mine, and more an insistence.

Nor did I realise that I have in fact been holding my breath for some time now.  For at least three months in fact, since the last round of Big Checks in October.

I have been on six monthly checks since reaching two years on from diagnosis apart from a glitch following the embolism, and more recently with my endocrinologist requesting 3 month reviews.  My last set of checks in October were difficult in that there were some question marks around the tumour markers in particular.  Dr W2 did not find them alarming enough to warrant immediate further investigation, but he felt that 6 months was too long to wait for the next review.  Hence I turned up at the hospital doors on Thursday, clutching my appointment slips, my best nervous smile and that familiar sense of letting go as yu are led through the coming hours of medical process. As always I had fasted overnight, and as always turned up first of all at Counter 2 to set things in motion.  And that is where I was met by surprise Number 1. Yes, I should have the blood draw first, but then was X Ray.  X Ray?  I had no idea that had been requested and when I expressed my surprise the nursing team showed me the slip and the tick against X Ray box.

Things happen so quickly and in no time the blood had been drawn and I had had my surprise chest X Ray, was dressed again and back at Counter 3,  It was not even 9 am! The team suggested that rather than waiting to see Dr A, the endocrinologist later in the morning, I should come back at 5 pm and see both Doctors. This was a real bonus as it meant I could return back to the hotel and have the breakfast which I usually miss due to the fasting and subsequent appointments.  It was surreal being back in the hotel, breakfasting with fellow guests yet feeling that I had somehow already spent the best part of a day at the hospital. The surgical tape and dressing on my arm were a clear sign though that I had not imagine this.

Then begins the Waiting Time.  I adamantly refuse to use this time well because I feel it tempts fate to do anything which resembles planning or makes any assumptions about the future.  The hair appointment is a classic example.  I will not even phone for an appointment to rid my hair of an encroaching silver topping until I have met with the Doctors.  No point in planning a hair cut if the hair were to go again.  Paranoid thoughts, I know, but having had to change plans so many times in the past due to unexpected tests and worries means that I have swung to the opposite end of the planning spectrum during the the time of the checks.  Not until I am at the pharmacy counter with a new bag of meds and an envelope with my results and appointment slips for months ahead, do I return to a planning frame of mind.

After breakfast I headed out to do a few errands, and then headed to a favourite waiting place, a peaceful tea room in a quiet corner of an otherwise manic shopping mall.  This place feels peaceful and although my mind is not, I take comfort in extended pots of tea and people watching.

Eventually, it is time to return to Counter 2 and the start of the nervous, serious waiting.  By this time, I know the score.  I have a number of conflicting scenarios in my head which range from “everything is fine, I am worrying about nothing” through to “I must savour this time, because it is all going to change again…”.

Soon I am called to see Dr A.  Smiles all round.  He is pleased with my bloodwork and examination.  Sugar is stable, so diabetes still held at bay, thyroid stable, kidney and liver functions all fine and the cholesterol has gone down a good chunk.  I had been really upset when the switch to Femara had been accompanied by rising cholesterol levels which diet and exercise did nothing to slow.  So he was very pleased and happy to extend the review time a little.  Though when he saw that Dr W, the surgeon will see me in April, he suggested that we align the checks to save the need for separate visits. Very encouraging indeed.

I left his consulting room with a smile, and returned to the Waiting Area. I realised that he had not given me the set of results as he usually does, and I had not been able to catch sight of the tumour markers. And those were the key results which were in the spotlight.  It was those results back in October which had concerned Dr W2.  And I know that it is not the number which is important, but the trend.  This set of results would show whether there was an upward trend or not, and if so how dramatic that might be.  I started on a new worry trail.  That Dr A had seen the markers and knew that there was no point in worrying me before I would discuss with Dr W2. When I have commented on tumour marker results in the past during Dr A;s appointment he will agree that the result is good or that needs some conversation with Dr W2 if raised.  The longer I waited, the more I found it difficult not to speculate on the number, again veering between willing it to be low and fearing it to be significantly raised.

I never manage to read or distract myself in the Waiting Room.  I sit quietly, watching, waiting and worrying. Soon I heard Dr W2 arrive, his voice reaching his room before he did. The waiting cranks up a gear.

And then I am called to his consulting room and we exchange Happy New Year wishes.  He never beats about the bush and told me that everything was fine, bloods good and the surprise X Ray fine.  And the tumour markers?  I venture.  “33” was his answer.  And that was a good answer indeed. Still above the reference range (which is up to 22.  22 “whats” I have no idea, but up to 22 of them is “normal”.)  When switching to Femara my results jumped from around 20 to 32m which prompted the bone and CT scans and Great Angst.  They have since hovered between 30 and 32 until the checks in October which showed another jump to 37.  Not a huge jump, but again it is the trend which is important. A drop to 33 was good. Dr W2 was happy.  He asked usual questions about bone pain, and continues to keep an eye on bones.  And then he suggested that he review again at the same time as Dr W and then if all is good return to 6 monthly checks.  And that was the BEST piece of information possible, all things considered. Perfect.

I left his room beaming, really relieved and realised that it has in fact been a long time since all of the Doctors have been happy and that things are properly back on track.  As I slowly breathed out I realised that I have been holding my breath for a very long time. I had been particularly despondent at the last set of checks with their “five year” status holding such significance, and with me taking a step backwards it felt.  At last now, I feel I am moving forward.

As always, even with the best of news, I am never of a mind to celebrate or leap around “high fiving”.  Rather I find myself subdued and reflective.  And emotional.  By the time I was in the taxi back to the hotel, I was struggling to hold back those tears, trying to quietly blub.  But that is not easy – I am not good at silent sobbing, and found myself trying to swallow back the strange noises and not give the taxi driver cause for alert!  It was fortunate that the Bangkok traffic was typically busy and provided ample time for composure before I arrived back at the hotel, Relieved, depleted and quietly thankful.

I know that the Waiting Room in April will again be tense, and that there are no guarantees that the good results this time will automatically follow through.  But I do know that I feel lighter than I have for a very long time.  And that is something to hold tight and savour as I continue to breathe deeply and thankfully.

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10 thoughts on “The Waiting Room

  1. I’m new to this journey and already the Waiting Room strikes panic. I think the “being unable to plan ahead” is the hardest part- that part really resonated with me. I’m so pleased for you that you had good news.

  2. Fabulous news, and as I have said before, completely identify with the gamut of emotions you describe.

    Here’s to April!

    Much love x

  3. This is good news indeed and definitely something to savour. I am always fascinated by the different care regimes across continents. Here they rarely use tumour markers because, they say, the results often fluctuate and cause unnecessary worry. Tests or not I know of no way to avoid ongoing worry following a run-in with cancer so the best we can do is make to most of the present and try to hold the more irrational thoughts at bay.

    • Thank you T, yes it is very very welcome news. I am also intrigued by the different approaches. With mine, they do show a trend which I find helpful as they are measured over time. But yes, that means uncertainty when there are fluctuations out of the usual pattern. And the reality, as you say, is that the anxiety is there no matter what. I am really leaning on my word “breathe” – lots of breathing! Warm wishes to you x

  4. Philippa – I was holding my breath reading this post! LOL Until, of course, I got to the part where you said you had been holding your breath (for years, really), and could finally exhale. I, too, then exhaled with you.

    Grateful to hear that all is well. Sending you many hugs. Miss you.

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