The first appointment had gone well on the Tuesday, and the rest was waiting for me with most of it due to happen on scary Thursday.
This round of appointments would include 3 appointments with specialists and something with the port, as well as the visit to the lab of course to re-unite me with some needles and confront me with my aversion to them.
As always before these checks I did not sleep well. This could be partly attributed to the inevitable anxiety, replaying all of the possible scenarios and results in my head. It was also partly because I had made a concerted effort not to become dehydrated before my fasting blood test. Apparently dehydration can be one cause for the CEA tumour marker to be raised. The natural consequences of this hydration strategy unsurprisingly added to the number of times I awoke in the night.
My first appointment was at 9.15 am which meant blood-letting in advance of that. I arrived at Counter 2 just after 8 am and in no time had been processed by the blood letting counter. As always, the veins were in hiding and the blood letting nurse had to slap them a bit to make them cooperate, and I was relieved as always when the happy plaster was on my arm to show that the procedure was complete.
My first appointment was with Dr A. He is an endocrinologist apparently though I am going to have to Google that to be clear what it means. I do know that he looks into my glucose levels, cholesterol, other blood stuff and blood pressure. I also get a sneak preview of the tumour marker which is also on the bloods report and this is a big thing on my mind. My BP was good, much lower than usual when being checked by a white coat. I think that the Sudoku in the waiting area helped. My cholesterol was also very good (reflecting I think, the care I am taking with what I eat). The sugar levels were still a bit high though, and although not at diabetic level, they are still sitting consistently in what Dr A terms the “pre-diabetic” stage. Diabetes does run in our family – my mother, maternal grandmother and great mother were all diabetic so I know that I have to work hard to keep it at bay. The longer I can do this the better.
I tried to have a quick peek at the tumour marker result but couldn’t see it, so I asked Dr A how it was, unable to contain my nervous curiosity any longer. It was blank. There was no result in the space against the marker tests. Dr A checked and noted that it had definitely been requested, and said that perhaps it was not yet ready. So my day would not have the prior knowledge of this result, and I would have no choice but to wait until I saw Dr W2 that evening to be put out of my misery.
Dr A was happy with the work I am doing to try and be as healthy as possible, but it is clear that I have more to do. He asked me to come back in 3 months.
No surprises in this appointment, and positive messages mainly. With that, I headed off to break my fast as I was starving!
I had a few errands to run in the intervening time, before the evening scary appointments and the hours passed fairly quickly. Before long I was back at Counter 2 and waiting for Dr W2. I knew he was not there yet, because it was quiet! I soon heard his signature laughter and sure enough he rounded the corner and headed towards his room.
I was first on the list and with minutes was on the examination couch while he gave me a thorough check. He said that Dr C had been very happy with my progress. I replied that I no longer seemed to be cooking on a slow roast, and that led us onto a conversation about whether I was medium rare or well done! After the examination I knew the tumour marker question would come up and I tried again to peek at the results page, but Dr W2 was holding the paper at an angle and I could not see the numbers. Then he announced that my tumour marker was now in the normal range. What? Really???? Are you sure? The marker was now sitting at 3.3 – and the normal reference range is under 3.8. The great thing about this is not just that it was normal, but that it has reduced with each 3 month check. It was at 5.03 in August, and then went down to 4.54. The reassurance for me, bearing in mind that the tumour markers are not a complete or fully reliable indicator, was that the markers were consistently reducing. In my lay mind, my fear was that a marker which continued to rise would probably have a worrying cause and suggest that something nasty might be growing in my system. So a move in the opposite direction is something I find very reassuring.
Dr W2 spent some time talking about my hormone levels and whether or not I am post menopausal. Having ovaries is not a great thing and he wants to keep an eye on my hormonal levels and the blood counts are inconsistent.
Then we moved onto the subject of the port, which had also been on my mind for quite a while. He said that if it was being problematic then it could probably come out but first we should try and see if it would flush. He said that the oncology nurses are highly experienced in “cannulising” (sounded like “caramelising” ports so they may well be able to see what the problem was. If it would not clear then I would have the port removed. Obviously this was daunting and frightening, but I knew it was inevitable. Adding to the stress, was the fact that my flight was booked for the early afternoon, which meant that any (even minor) surgery would have to be finished my mid morning so that I could get my flight. I asked if he thought it would be wiser to delay my return, and he laughed and said it was very easy to take the port out. This was accompanied by a gesture which looked alarmingly like that of a noose being tightened, as he mimicked whipping out the port and catheter which is currently connected via the jugular vein into the heart! Yeeeeeeeech!! I said that if it was being taken out I wanted happy pills. If I have enough then I don’t need an aeroplane to get me back to Yangon – I could fly back under my own steam!
He said the magic words – nothing indicating recurrence or spread and asked me to come back in 3 months. Actually, he asked me when I wanted to come back – I said I had been expecting to return in 3 months and he said that was the right answer! So l left his room clasping an appointment slip, the 3.3 and NED in my head and the terror of the port work in the morning.
I completely forgot to ask one of my important questions with all the port and marker discussion. When is it safe to dye my hair?! I love my chemo curls but do not like the colour and want to do something subtle to turn into a stunning red-head or at least non-grey head. I am not sure if I can wait 3 months to know the answer so any wise words would be highly appreciated.
I headed straight round to Counter 3 and Dr W’s office. My wait was again very short and I was called in almost immediately. Again I had to leap up onto the examination couch so that Dr W could check out Twang Arm as well as my scars and remaining asset. I was able to get Twang Arm a bit higher than last time, but still not good enough for Dr W. He gave me a very thorough examination and said that he saw nothing to worry him. I did ask him about a rash which comes and goes and seems to be worse when the weather is hot. I was fairly sure it was a type of heat rash but do not want to ignore anything which could be an indication of something more sinister. He said he had seen the rash and did not think it was worrying but that it would be wise to see a dermatologist. With the limited time I have until my flight, this is something I will need to take forward in Yangon or when I am back. He says I should get it seen to particularly if it gets any worse. I think having radiation, surgery and shingles has left me with very sensitive skin which is too easily irritated.
He then spoke about my weight. Despite my daily swimming and care of how I eat, I am not getting any lighter. It is possible that Tamoxifen is not helping. I know that to maximise my probability of keeping any recurrence at bay, I have to really look after my health and exercise and diet are critical. Dr W was very clear. I should try and lose 5 kg before my next appointment. I need to crank things up another gear to try and get off this plateau.
Dr W confirmed that he wants to re-run the scans at my next check, to keep an eye on the marks on my liver and the little cyst in my right breast. I do find this reassuring, though I know that when the time comes round I will be highly anxious about them. For the time being though, I was happy to be sent away with my friend NED and appointment slips for April.
I walked back into the night air, highly relieved, albeit mindful of the importance of really working hard on my health and wellbeing. Scary Thursday was nearly over and although the reports were good, the prospect of the work on the port the next morning was providing very good material for worry. Although I was very tired, I knew that I would probably have another rather fretful night.