Today marks another Landmark Day. A Big Landmark Day in fact, almost as big as the Cancerversary. Two years ago today marked the start of 8 cycles, and five months of life dominated by chemotherapy.
From the time I knew that I might have cancer, the biggest fear I had apart from the obvious “oh-my-God-I-am-going-to-be-dead-by-Christmas” fear was about having chemo.
I knew very little about cancer and even less about chemo. I knew chemo equated with baldness and I knew it made you very sick. I had no knowledge about how chemo fought cancer nor whether it was successful. I only knew I was terrified of it.
When I was diagnosed, I asked Dr W abut chemo. He told me that there had been great advances in chemo and that as well as refinements in the chemo drugs themselves, the side effects could be well managed with different medications. Furthermore, I had read somewhere (in other words, somewhere on the internet) that not everyone lost their hair during chemo. Being rather good at denial I latched onto these points and decided that I would not be hugely affected by chemo and that I would one of the lucky ones and not lose my hair. I am not sure that it is possible to focus on denial from a point of logic, but in effect, that is what I did!
However, that did not keep the terror at bay. I approached chemo with abject fear and dread. I was already in hospital following surgery for port insertion, Twang Arm fiddling and Blood Pressure complications and Dr W2 was keen to get the chemo underway without delay. The day of Chemo 1 was 23 October – exactly a month from the day I discovered the lump in the first place.
This is my account of the first chemo from the early days of the blog….
I was so scared but I knew that it had to be done and I was wheeled off without protesting to the oncology room on the same floor.
I think it’s fair to say that I was afraid of everything. I was frightened of the chemotherapy process. I was frightened of using the port. I was frightened of adverse reactions to the chemotherapy medications. And of course I was frightened of the side-effects.
But the staff were lovely. They were totally professional and very calm as they prepared me. I jumped though as they pressed the port area, it was so tender. I had no idea how they would insert the needle into the area. They called the surgeon to have a quick look and see if it was possible to use it so soon after it had been inserted. The surgeon felt that the area was too tender, and that for the first time the chemo should be administered intravenously. I have to confess that I was actually relieved by that.
A vein was quickly identified, and an intravenous line was inserted. Phew! The nurse sat with me, next to her shiny trolley full of potions and syringes, and went through the process with me. First they would run saline through to make sure that the IV was working and give some time for me to settle.
Then she worked her way through a set of different sized syringes, all of which contained medications to counteract the side effects of the chemo. One of these in particular had a really strange side-effect of its own. The nurse explained to me that I would have an itching sensation for a few moments – she wasn’t joking. It felt as if I had been invaded by an army of marching, biting red ants and I wasn’t sure whether to wriggle, giggle or blush. I think I ended up doing all three to the amusement of the nurses. Next came more saline to make sure these meds were all washed through and then began the preparations for the first chemo dose. I knew that I would have two different types of chemo medications, each chosen according to the specific characteristics of my spaceship tumour. At this point the nurse gave me an information sheet which described in detail the medication which I was to get, its likely side-effects, it is purpose and rather gruesomely the fact that it was a bright red colour. Marvellous! As if having chemotherapy isn’t already something which feels very toxic – the red colour suggests danger as well as toxicity. One of the side effects of this one was the fact that it will turn your urine pink! Is this some kind of branding approach? Pink ribbon, pink urine?
The bright red fluid was duly hooked up to the IV line and a mechanical, pumping noise ensured I knew it was being fed into my bloodstream. The rhythmic noise felt like a whispering chant to destroy any cancer cells, I guess it was my way of handling it.
After half an hour or so, a beeping told us that the red med was finishing and the nurse fed the last of it through before hooking up more saline.
She then sat with me and went through the next information sheet about the second chemo med. Similar side effects – hair loss, vomiting, nausea, suppressed immune system. Great, bring it on and let’s keep moving forward because there’s no way back!
The second chemo medication was clear and innocent looking, but just as toxic, though without the pink pee after effect apparently.
The whole process took around two hours and I found it impossible to concentrate on anything except what was happening to me. I could not listen to music or watch TV or read the book which I had brought. All I could do was lie and listen and wait until it was finished.
Finally after listening to the pumping of the medication systematically going through my veins the second chemo was also finished and the whole procedure came to an end with a final rinse of saline and removal of the IV line as well as advice about which foods to eat and avoid.
I was taken back to the ward feeling rather stunned. My head felt strange, something I can only describe as kind of buzzy. I felt disengaged from the reality round about me. Most of all I felt an enormous relief that this first dreaded treatment was finished and that I had got through it.
I was then discharged, my second hospital identity bracelet was snipped from my wrists. Again I was given a bagful of medicines, an appointment sheet for Dr W2 and I signed some forms, collected some cold packs and again found myself in the night air and returning to our studio apartment.
This time in my little bag of medicines there were some very important drugs – the side effect management drugs which would see me through the coming days, the ones which would become affectionately known as the Groundhog days.
That was the start of life being dominated by chemo, living life in 3 week increments around the chemo cycles, avoiding infection, trying to eat carefully and nutritiously (in fact just trying to eat), monitoring temperature and other health signs, commuting between Bangkok and Yangon with mask and often wheelchair. It was long and arduous, but it did not last for ever, even though it felt as if it would at the time. Looking back, I realise how little I knew of recurrence and metastasis and was focused on getting through the cycles set in front of me.
It is hard to believe that a whole 2 years has passed since that day. Living with NED is a precarious blessing – one which I value and appreciate daily.