The strange post treatment phase has been a time when life has not been lived around hospital appointments. However, not terribly far on the horizon has been the prospect of the regular 3 monthly checks. I am glad that I have such regular monitoring, but at the same time am so scared of recurrence that I dread the checks as much as I value them.
It seems like no time since we were last at the airport, travelling for my 8th chemo, but it was over 4 months ago. Of course the chemo was followed by the radiation and then home leave in Scotland, so it has been not long over a month since getting back home and picking up the reins of a life again.
It was a strange feeling being at the airport and it reminded me more of my first departure in October, more than the subsequent visits for some reason. Perhaps the fact that this visit was a check and held the same uncertainty as the first visit did. The clouds were heavy and black and our short flight pretty turbulent, a bit like my nervous stomach I guess.
We were quickly in Bangkok, and arrived in our studio before sunset. I was happily distracted by good internet connection and spent a good part of the evening catching up.
All too soon, it was morning though, and that meant one thing. Although my appointments were not until the late afternoon, I had to have blood taken and some of the tests need me to fast beforehand. So I headed round to the bloodletting counter and after revising some timings my name was called by the needle lady. She recognised me, or at least she recognised my battered chemo veins and my pathetic whimper asking for gentle treatment. A number of vials were filled quickly and the first needle bit was finished – phew!
I was then free until the first appointment later in the afternoon but in my usual wittery self, was unable to really be able to relax and enjoy the time. I found myself wishing the time forward and before long it worked and I headed along to my first appointment.
This was with Dr A who has taken over from Dr P and a kind of GP. He looks particularly at my blood pressure and blood sugar as they are a bit troublesome. The steroids of chemo had caused higher blood sugar levels and with a history of diabetes in the family it is something that needs to be monitored. Dr A noted that the fasting sugar was fine but the other one a bit high, not enough to be considered diabetic, but he termed it pre-diabetic. Great, but no surprise. So we had a chat about carbohydrates and fruit and clarified the need to avoid too much or too many. Unfortunately mangos are to be strictly limited, which is really hard just as now as they are in season and just delicious! My BP check, although high before the appointment due to my nervousness of the checks, was fine and well under control.
More importantly though, Dr A went through my other blood results and was really pleased that liver, kidney function are normal, cholesterol good and red and white blood counts getting back to normal. The body is amazing in the way it heals and recovers after such heavy treatment. So he was very pleased and asked me to come back in 3 months. Phew! One down, two to go.
Next was my appointment with Dr W2, the oncologist. We had a bit of a wait as he was delayed but before long we heard him whistling before we saw his smile. He called me in, and firstly examined me, checking the radiation healing, and my surgery area. I almost forgot to tell him I had had shingles, and he checked that too.
Then it was time for him to look at the bloodwork that he had ordered. He was similarly pleased with my recovery, but noted one result. This is the CEA or Carcinogenic Embryonic Agent and it sounds pretty sinister to me. He said that this one was higher than the last time it was tested, back in May at the end of radiation. This immediately set of loud clanging alarm bells in my head and I asked him about the CEA. He said it is sometimes called a tumour marker, which I have heard of, and this can be an indicator of some progression or recurrence, but can also be caused by other factors. He said that smoking can cause it to be elevated – and I told him that did not reassure me as I have never smoked! I knew I was going to be Googling as soon as I got back to the studio!! He told me that it is not anything to worry about at the moment, but that he wants to keep an eye on it and see me again in 3 months. He had said in May that he would make a decision about whether or not to de-port me this time, but we did not discuss it, and I am pretty sure that is because there is no point in taking the port out when the marker is slightly high. Hmmm. So then we talked about another favourite activity – flushing the port. He said it should be flushed then, and again in 6 weeks, at the midway point between checks. I asked if I could have it done in the morning (today) and he laughed and asked if I had forgotten my magic numbing cream (though of course he called it by its proper name). I said that I still had to see Dr W and that it would be very late so best to do it in the morning, and he agreed.
So my heart was a bit heavy when I left his room, even the general message was good, the tumour marker was not something I had wanted to hear. It made my wait for Dr W (the surgeon) a bit gloomy, as I watched the women whose appointments were ahead of mine. I also knew that Dr W would have something to say about the Revenge of Twang Arm. His assistant kept me updated on how many patients were in front of me, bless her, and soon it was my turn. After a warm hello I was sent straight to the couch for examination. He examined me very thoroughly, which I found reassuring and he found a very tender spot under one arm which seemed to be linked with the shingles nerve. He said he saw nothing suspicious or worrying. PHEW!! I do like to hear those words said out loud. As expected he was not impressed with Twang Arm’s limited range of motion. Thanks, Radiation. Thanks, Shingles. He was particularly interested in my hair and the Annie Lennox look!! He asked what it was like before and I told him it was a different colour. He asked if it had been curly before, as there are definite kinks appearing. He was highly amused when I explained that I had paid large amounts of money at the hairdressers to get curls in the past. Somehow I preferred that to the chemo curling process!
We then sat down and he went through the details from his surgeon perspective. Apart from Twang Arm’s stubbornness he was pleased with my progress. He saw that Dr W2 had noted the elevated CEA tumour marker and I took the chance to ask him about it. He also said it was nothing to worry about, but that we should keep an eye on it. Apparently if it rises it can also indicate colon cancer, but was not at the levels which would indicate breast cancer, so he seemed very cool about it. He then asked if I have had a mammogram since diagnosis, and I said that I hadn’t. As I had expected, he said that he wanted to do the Big Check at the next check up as it would be around the one year mark, the time I have heard called the Cancerversary. He said that he had found nothing worrying, but of course the scans and mammo will give much more information and detail when I come back in November.
So it was all reassuring – up to a point. I really feel much stronger and fitter and the blood work was very encouraging. Except for that CEA marker of course, which was a real cloud. Predictably I was on Google as soon as I hit the sofa back at the studio, and looking up causes for elevated CEA. I did get a bit of insight, but not a lot of reassurance to be honest. The markers can indicate some progression which is really scary. However, the markers are apparently not a solid and reliable indicator on their own and in isolation and they should be tracked over a period of time alongside other tests. I also read that a minor variation (less than 2) was not worrying (ooh good – my rise was 1.1) – but as long as it is within the normal range. Oh. Mine was not significantly raised but is above the normal range without a clear cause. It was at the upper level of normal for a smoker. The one nugget I got from Google was that dehydration can concentrate the CEA and raise the result. I am hanging on to that a bit as I had fasted before the blood tests, and therefore was probably slightly dehydrated.
So the day ended on a mixed note. Relief that I am doing well and recovering, and of course that there was no obvious sign of any nasties. Relief that I had got through the first review check and had some really encouraging words. This was tempered however, by the trepidation of the port flushing in the morning, which I really dread. Most of all, though, was the niggle of the CEA marker and the knowledge which has lodged in my brain that there is a slight possibility of something unwelcome going on.
I am a worrier by nature. It is my best skill and I am an expert in the art of tormenting myself. I managed to rationalise the whole thing before I slept, but when I woke in the night, my mind had turned it into a big scary beast. I usually get rid of these thoughts by focusing on the coming day – but with the prospect of the dreaded port flush I found myself between a rock and a hard place in terms of seeking reassuring thoughts.
Happily, the day arrived in bright and sunny form which helped to dispel negative thought and I focused on getting back to the hospital and getting the port flush over and done with. I headed to the oncology ward on the 5th floor and had the magic numbing cream slathered over the port area. After the usual hour to let it take effect I returned and let the wonderful oncology nurse get on with the dreaded task. The needle was soon in and apparently my blood return was again good and the port was quickly cleaned and the needle could come out again.
So I was able to leave the hospital, and seal closure on my first 3 month check. I am due to come back in November and know that I will be really stressed by the Big Check, the marker contributing significantly to that stress. In the meantime, however, it’s time to continue with recovery, do all I can to heal – and to continue to see off Twang Arm!