New as I was to cancer, chemotherapy was something I knew very little about. Though I had a very close friend go through chemotherapy twelve years ago, I was unfortunately in hospital myself with a very rare autoimmune disease called sarcoidosis, so being engrossed in my own illness, appear to have neglected to have indepth discussions with my friend about chemotherapy.
Chemo, it seems, is different for different people, as I will later explain. For me chemo treatment is something called FOLFIRINOX, which is a combination of four different drugs:
1. Oxaliplatin
2. Irinotecan
3. Leucovorin
4. Flourouracil (also known as 5FU).
To receive my specific treatment I was required to have a Port-A-Cath (I may refer to it as a port later) installed. A Port-A-Cath is a small plastic disc implanted under the skin (for me at least) in my chest on my right side, and a tube goes from this disc into one of my major veins - specifucally one of my pulminary veins. The procedure to insert it was unpleasant and at times excruciating. I was awake and through the use of local anaesthetic and fentinol was "sedated". I found the "pressure" exerted by the surgeon when the tube was shoved into my vein an excrutiating experience. This is not in any way a comment on the surgeon. The procedure was unpleasant and I would rather have been awake. I understand that students and registrars must learn their trade and I consented to their presence (I could have objected, but why would I? Everyone has to learn), however, lying on the operating theatre awake (as I was supposed to be), with a small screen stopping me from seeing anything that might alarm me (I am reminded of Douglas Adam's Peril-Sesitive Sunglasses from "The Hitch Hiker's Guide to the Galaxy") while listening to a surgeon discuss the details of what he was doing to an eagre to learn student surgeon is not something that would normally alarm me. This time, however, three days after a diagnosis of terminal cancer and having spent only a shocked few hours directly after diagnosis and one single night before the procedure alone with my wife I broke down in tears many times during the procedure and due to the screen and their indepth discussion it was some time before anyone realised my distress.
Anyway, once installed I was required to wait for it to heal before beginning chemotherapy. The procedure was a Friday morning. I began chemo a week from the following Monday.
Here is what chemotherapy is for me from a purely drug related standpoint. I am required to have a blood test two days prior to each cycle to ensure my white cell count is high enough for treatment. A "cycle" is the time between each chemotherapy treatment, which for me is two weeks long. I begin on a Monday by entering hospital and spend 5 - 6 hours connected to the drugs as they infuse. I learned from my first session that I have a reaction to Oxaliplatin, which is mild - sweating, mild stomach cramps and I forget the third one. I now receive an injection in my arm prior to beginning chemo to ensure I do not get these side effects. I was told about them and they are so mild I did not notice them until I went to the bathroom and felt the cold air on my forehead which let me know I had been sweating in what is not a specifically warm environment.
I receive the oxaliplatin via my port and it drips through slowly over a couple of hours. Then I am attached to the second two drugs which I receive simultaneously. In tandem with the chemo are side effect limiting drugs I must take regularly:
1. Omeprozole, which I (and it seems most of the rest of the civilised world) have been taking pretty reguarly anyway for the purposes of indigestion relief.
2. Antiemetics (anti nausea) of various sorts.
3. Steroids, which are supposed to reduce nausea and give me a sense of well-being. What they actually do (for me, once again, this is not a comment on the drugs or anyone else who may require them) is give me the complexion of a spotty teenager and give me the distinct feeling someone has spiked my drink with some sort of stimulant. At my request, I no longer take these as they appeared to do more harm than good (once again and from here on in, any comments that could be taken generally are more likely intended to be specifically about me and my own experience).
4. Zopicone, a sleeping tablet taken as required.
There is more, but it is for something specific so I will come back to it.
The only effect that I actually feel as a result of the chemotherapy is usually the effect of the steroids, which I am no longer taken - with one exception. One of the first three chemo drugs has a bizarre and unpleasant side effect that some people, of which I am one, can experience called cold neuropathy.
Cold neuropathy manifests itself for the forst week of each of my cycles by giving me ferociously painful pins and needles if I inadvertantly put my hands into or retrieve something from the fridge or chest freezer. It can also happen because it is mildly cold. Gloves are mandatory. I was even wearing them in bed prior to having central heating installed earlier this week. It also manifests itself as excrutiating pain in my feet should my feet become cold - such as on the concrete floor of various retail establishments as I have discovered to my horror. Thermal socks resolve this and while I joked with some colleagues recently about the lack of battery powered heated socks that Tomorrow's World on 1980s BBC television promised us, apprently you can purchase battery powered heated insoles from motorbike shops. I am going to buy some as soon as I finish this post no matter what the cost. It also manifests itself by giving severe pain in my lungs if I forget to only breath through my nose while walking outside (remembering it is currently winter in New Zealand). If I do something as natural as walking and talking, the pain can come and is debilitating. All thoroughly avoidable, yet so easy to overlook given my fondness for the contents of fridges, retail establishments and conversation on the move.
It manifests itself in other ways too, as I discovered during my first chemo day. My speech becomes affected, slowing to a crawl. This was terrifying when I noticed it. Apparently it is from my tongue becoming numb through cold, though mild cold. The only way to stop it is to place a heat pack on my throat. Thankfully, it does stop it and when it happened during my second chemo day I was less nervous. They also have an electric blanket plugged in and at the ready now and I wear head to two thermals in to hospital.
So, at the end of my five or so hours, I get my 5FU (my fourth and final chemo drug) connected to my port, where it stays for 46 hours. I need to carry it around with me for two days. I carry it in a bum bag. I do not like my, or indeed, any bum bag. Hence, I tend to spend this time at home.
They call the day in hospital, day 0. People who work in IT are familiar with the first in any given group being called "0" rather than "1". It is how hard disks are named / numbered. I have been working in IT for fifteen years and I am still not sure why this is. I accept it the same way anyone with electricity accepts that plugging an appliance into the wall makes it work. On day 2 (the third day, if you follow me) a district nurse calls to my house to remove the infuser. On days 3-6 I require an injection in my stomach, which my wife has been giving me, though I managed to give myself the last time. It is painless and straightforward. It restores my white cell count.
I have another side effect, which is indigestion the like of which I have never previously experienced. It comes as chest pain, which spreads quickly through the length of both arms and, oddly, into the left side of my jaw. I need my final two prescription drugs to tackle this:
1. Mylanta, which is liquid relief from indigestion and does little unfortunately.
2. Sevradol, which is oral morphine.
The latter, thankfully, eradicates the pain and thankfully, in my case at least, has no negative side effects whatsoever apart from potentially giving me constipation, so I take laxatives at the same time. It does have the added bonus of giving me a "warm sense of well being", which I thankfully rather enjoy; certainly a lot more than the pain it relieves. The down side is it does stop me from being able to drive for at least eight hours, which can be inconvenient to say the least.
My first cycle did not go well. I was admitted to hospital on three occasions - the final admission for three nights - all due to the side effects of chemotherapy. My first admission, which was an overnight admission, was due to vomiting. I vomited continuously throughout the day. Everything I ate, came back with reinforcements. My second and third admissions were related to the same thing: diarrheoa, but caused, as I found out during my third admission, by colitis, which is an enflamed bowel. Colitis is exacerbated by eating and drinking, so I required 24 hours of bowel rest to allow it to subside. This was not possible without remaining in hospital on intravenous fluids.
For various reasons, my first two admissions were unpleasant for reasons I will not go into here, though my third and (to date) final admission was actually very pleasant. I spent three nights in the oncology ward for the first time. It is where I developed my appreciated for how damned lucky I am with the type of cancer I have, terminal or not. I was in a room with a man, who judging by his job and achievements (which I obviously have no intention of discussing in this forum) was somewhat of an intellectual and a furious wit. My initial conversation with him was hillarious. The next day, I learned (as you do when you share a room with another patient and try as you might to distract yourself, cannot help but overhear their conversations) that he had very recently been diagnosed with a brain tumor and then next evening was not able to to recall his birthday in order to receive his medication. I also heard the coughing and wheezing of people with lung cancer and saw the immobility of other patients with other cancers. Whereas I still have all of my reason, my brain function, my health, my strength and my lung capacity allowing me to dance, sing and run. I feel incredibly lucky.
Through a dose reduction of my chemotherapy drugs by 20% my second cycle has been much more successful. Since day 2 (Wednesday of my first week), I have had few side effects of any sort bar the cold neuropathy. Even the nausea has barely shown its face.
Now, a few words on nausea (once again, as I experience it).
I experienced much nausea through my pancreatitis prior to my cancer diagnosis. A combination of Cylizine and Ondansitron was able to resolve much of it and allow me to muddle through. These two drugs combined with two others whose names I do not recall did little to resolve my nausea during my first cycle, though with Cyclizine alone for the first few days I have made it through my second cycle. On my first cycle I was nausea free for the last three days, whereas for cycle 2, I was nausea free for (to date, with tomorrow being my last dya before getting chemo again) 10 days, and assuming tomorrow I remain the same only the first three days cause me any hassle.
The nausea itself is vile, though. It literally makes you feel as if you are seconds from vomiting and its constant. Until you have felt this, you cannot imagine how it feels as nausea such as this is rarely if ever felt without vomiting immediately, unless of course (in my experience) with chemo or pancreatitis. During my first cycle, I experienced another type of nausea that caused my throat to go through all the actions of vomiting though without ejecting my stomach contents. Thankfully, though experienced frequently during my first cycle, I have not experienced it since.
One thing I may not have previously mentioned is that between the start of March and now, my weight has dropped from 110kg to 85kg. Pancreatitis related loss of apetite and days in hospital of which I have lost count where I was either Nil-By-Mouth or on a liquid diet have given me the figure of my sixteen year old self. There have to be some benefits to terminal cancer, eh? At least I look damn good. Shame its winter and I cannot show of my new physique before I pile it all back again.
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