Yes, that’s right – this is not a progress report, but an update about progress related to my weird and perhaps wonderful port, which has been neglected recently. It has been absent from discussion here recently, as well as being unused since chemo 8. I have certainly not forgotten about it though.
Since it was “installed I have always been aware of it and it can be quite uncomfortable. The button on my neck remains a mystery and gives me the wobbles when I touch it by accident. But, and it’s a big but, it made the chemo infusions far less trouble, pain and discomfort than having a cannula inserted each time. The experience of IV antibiotics when I had my little encounter with pneumonia confirmed that emphatically.
Now that radiation has started, I have found that the port is more uncomfortable than before. It pinches a bit when I sleep and when I raise my arm above my head for the radiation zapping sessions it also nips.
But here is the problem. Firstly, the thought of its removal gives me more heebie jeebies. I know it is a small and easy procedure usually carried out under a local anaesthetic. That means needles and cutting and being awake and freaked out when it is getting done. That is Scary Thing Number 1. And ironically, I am just as scared of general anaesthetics so that would be Scary Thing No 2 (or perhaps 1b since it would be one or the other). Secondly, and I know this sounds inconsistent and a bit strange, but if it is removed, what happens if I need further treatment? The problem with cancer is that you live with the fear and uncertainty of a recurrence. That is the Most Scary Thing. The thought of recurrence is accompanied by the dread of more treatment, especially more chemo. Scary Thing No 3. And if that happened when the port has been removed then there would be the additional matter of another small surgery, with its cutting and needles and horribles to contend with to insert another port. Scary Thing No 4.
There seems to be a mixed approach on removal of the port straight after chemo. I have heard of many women who have said goodbye to their port pretty quickly after their last chemo and many more who are still nursing theirs.
So when I had an appointment with Dr W2 on Sunday, I was not surprised when he mentioned the port. My stomach flipped as I knew that whichever option he suggested, it would give me the heebie jeebies. My own preference would be to wake up one morning, and find that it had been miraculously removed in my sleep. Not by surgery, you understand, by magic.
Dr W2 told me that he didn’t want to remove the port yet. Of course there is a relief that no imminent surgery is facing me. But of course, that brought in anxiety and fear that he secretly believed that I would need more chemo! Irrational I know, but that’s what this does to you, believe me. I asked him why, and he explained that it is such a simple process to remove it (yeech….) and much more difficult to put one in (probably even more so for a second one) that it was better to leave it in for the time being.
So a reprieve from needles and knives for the time being, but for my worry worry head, a bit of a cloud.
Then came the finishing touch. As I am not having chemo any more, there is a need to flush out the port and make sure it is clean and there are no blockages. Charming!!! Seeing my face, he quickly assured me he was not going to do it right then and there but it would need to be done next time. Something else to look forward to.
So that is the update on the port. We are still inseparable and will be for a bit longer.
It also delays the moment when I find out more about what it looks like and how precisely it works. It still freaks me out too much to find out detailed information when it is still there. So in the meantime, here is an insight for you. Quite literally. When I had my chest X-ray in Yangon, there was a lovely clear X-ray image of the port. The image below gives a sense of what it is like.
There are still many mysteries of the port, but the biggest one is about the funny button on my neck. You can clearly see the port and the round shape where the special needle is inserted. You can also just see the catheter leading from there which snakes around and eventually leads into the jugular vein (heebie jeebie jeebie). There is no sign at all, however, of the button on my neck. That is a mystery which will have to wait for another day.