I still can’t get my head round the “port”, or how it works. This is the magic device, inserted surgically, which means that the chemo does not have to be administered through a vein in your arm every time. For those of us who have a high number of chemo cycles, it saves these veins and a lot of pain and discomfort.
Before the operation, Doctor W kindly drew a little diagram showing what it looks like and how it works when he described the procedure to me. I had visualised something with an external element, perhaps something like a tap, to which the chemo pipes high as would be attached. My stomach flipped when he mentioned skin growing over the port after it has been inserted – so how do they put a needle in???! Through the skin?! Heebie jeebie jitters! Then he drew a little tube which feeds into the vein, so that chemo goes straight into the bloodstream – straight into the jugular in fact! Now that’s pretty scary too!
I must admit that I still found it quite difficult to understand, but because it was grossing me out I preferred to remain in ignorance.
So after the operation, and when I finally plucked up courage to look, I was surprised to see that I had two incisions. One was around my collar bone area (also remember I’m not a medical expert so it might not be my collar bone) and had a kind of “bump”, a little bit like a protruding button on my neck! Then lower down, a longer incision. I have now had this contraption for over two months and I still can’t work out how it all works.
I did look up a reference to the procedure from one of the discussion forums of one of the breast Cancer sites, which has a huge amount of gory detail about the port as well as some discussions on different experiences. The reference directed me to an amazing blog by a man who had had pancreatic cancer and had been brave enough to photograph and document the whole procedure of the port insertion. Sure enough he had the same incisions as I do, but it didn’t take me any further in my quest to understand how it worked. My inadequacy – not his explanation. I also found it difficult to concentrate on the procedure too much from his description because sadly, he had eventually lost his fight with cancer and I felt a sense of voyeurism in reading his selfless, frank and brave accounts of his illness. Selfishly, I have to confess that it also really spooked me – that’s the thing about a cancer diagnosis. No matter how good the odds are of a full recovery, they have just odds and you just don’t know which side of the probability line you will be on. So I ran away (virtually speaking, of course) from that site is feeling guilty and reminded of my own mortality. And not really any the wiser about the port.
As the port had not been used for the first chemo, I approached chemo 2 with a sense of fear combined with curiosity. So how would the port be used? Would it hurt? Of course it would !! And would it feel any different having chemo infused directly into the jugular as opposed to a vein in my arm? I had a horror that the chemo would be stronger and even lethal going straight into the jugular.
So I was a bit of a wreck when I turned up for chemo 2. To add to my anxieties, I was unsure of the procedure for the session – I had been an inpatient for all chemo 1 and the oncology staff had just come to get me when it was time.
I started off at Counter No 2 and waved my appointment slip, thinking they might just send me off to the oncology ward on floor five. Or, even better, tell me to go home!! But no, the slip disappeared and I was told to sit and wait. Stomach churning and hands shaking, I waited. One of the nurses took me for weight and blood pressure check as usual outpatient procedure. A while after, one of the oncology nurses with what looked like a picnic basket and she took me on to another room. She opened her picnic basket, and took out all sorts of goodies including vials ready for blood and other creams and potions. She took blood and then had a look at the port area. When she pressed it, it felt tender (it still feels tender) so she slathered on some magic numbing cream. But the weird thing was that she didn’t go near the button area on my neck but covered the other incision area. I tried to say that I thought that the port was the button but we didn’t understand each of her so we remained in confusion. I was returned to the waiting area, for it to be analysed and to wait for Dr W2 to make his grand entrance.
Sure enough, before long I heard him and then saw him. All too soon it was my turn to be called in to see him. He did the usual checks and told me that the blood tests show that my kidney and liver functions as well as blood counts were all okay – so chemo 2 would go ahead. Oh no! Oh good! Because of the level of nausea I had had, he prescribed a new med for the groundhog days. And seeing how anxious I was, he also prescribed a magic blue pill to make things less scary! Phew!
Back I went to the waiting area. Before long a porter came to escort me up to the oncology ward on the fifth floor. I just don’t know how I can follow meekly when I so badly want to run away.
I was shown to my room and the oncology nurse came in with the anti nausea pre-med and the magic blue pill. I still had no idea what would happen with the port and this more than anything else we made me extremely nervous. The nurse came back with her clanky trolley and started to prepare me for chemo. She swabbed away the numbing cream, pressing on the area which I announced was still sore! What a coward! I also asked how long the magic pill to work because I still felt scared. Bless her, she said that she would come back shortly once it had started to take effect. So did I feel relieved? No! I felt disappointed in myself for being such a scaredy, and moreover still terrified because after more than two hours at the hospital, the procedure hadn’t even started yet. I had visions of them having to delay the use of the port again and use a vein in the arm – and half of me hoped for this as it seemed less gory. The other half knew that it meant putting in another IV line (which hurts) and would not solve the mystery of the port.
The nurse returned before long and started to prep me. This is because as far as sterilising the area and placing green surgical gauze around my upper chest – all very scary. Then she prepared the needle thing (which I couldn’t see because I was looking in the opposite direction!) Gently she then instructed me what to do so that she could “insert the needle”.
” Breathe in very deeply,” she told me ” and when I say stop, hold breath and I will insert the needle”.
So I breathed in a super yoga deep breath, held it when she told me to, she pressed firmly and hey presto it was in!! It really was! Now it could all start.
The first step of chemo using the port is to draw blood to make sure that port is working correctly and properly connected to the vein. She showed me the blood and then the saline was hooked up. As in chemo one, a series of anti-side-effect meds was administered first, including the red ants one. This was followed by the saline and then the first chemo, the bright red one. Then came more saline and the next clear chemo, all as before. In the space of a couple of hours chemo 2 was all done.
Removing the needle was similar to the insertion process – another deep breath, hold and then it was out. The nurse showed me the needle – shorter than I had imagined and attached to a flat device so that is why it didn’t stick out. However I was still none the wiser about how the port works and in particular, what on earth the button is for!
At my next appointment with Doctor W2 I joked that I had been unable to download music using my port. He roared with laughter and said he would have to insert an iPod chip in my brain for that to work. Serves me right for quipping.
Now after four chemo sessions, I remain largely ignorant of my own Youtube port and how it functions. I actually think that once this business is all over and I eventually have it removed I will then try and understand it – it just freaks me out too much while the thing is still resident in my body. It is such an amazing device though, I still reckon that there is some way of using it to download music and films.