Chemotherapy, a journey down the rabbit hole
I was very scared and anxious the night before starting my chemotherapy treatment. I couldn't sleep, the word chemo scared me as much as the word cancer did.... It's the fear of the unknown, as no one can predict what it's going to do to your body. Since chemotherapy effects are very different for everyone, not everyone has the same reaction. To help calm my nerves, in order for me to get some sleep that evening, my husband took me on a late night walk after I finished packing my hospital bag.
My chemotherapy treatment plan included four biweekly cycles of Epirubicin Cyclophosphamide - EC (aka the red devil), followed by four additional biweekly cycles of a different chemotherapy drug called Paclitaxel. As I arrived, at the Chemotherapy suite at Sussex Cancer Centre, I’m weighed, my blood pressure is taken and a device is clipped on my finger to measure my oxygen levels. Next came my own routine, which was to nip into the toilet (before I’m attached to the scalp cooling and drip machine) and put the hospital electric blanket on my arm and shoulder for comfort before I start reading my book. The nurses at the chemotherapy suite were just amazing, truly angels walking among us, doing their work supporting and reassuring the patients with empathy and smiles.
On my first chemo cycle, the nurse had to inject my EC chemo infusion slowly into my vein via a cannula (a small tube which is put into a vein in the back of my hand). That was inserted into my right hand at the beginning of each treatment and removed after the chemotherapy had been given and the treatment ended.
I actually felt comforted to have medical personnel close by whilst the first lot of chemo was put into my body. This was in case my body reacted to it. It didn't hurt to go in, I didn't even feel it but weirdly enough I could taste it. So for my following cycles I made sure to pack strong flavour snacks to mask the strong metallic taste of chemo. My brother stayed with me and we played cards to distract me and help pass the time.
Unfortunately after my second cycle, the EC chemotherapy fluid given through the needle caused inflammation within my vein and that caused blood clots to form. My right forearm started to get very painful, swollen and red. So before my third cycle of chemo infusion I had a PICC line fitted in my arm to save my veins. It was fitted under local anaesthetic and was done within 20 minutes.
Having the PICC line made things so much easier, as it was used to give medication directly into my bloodstream or take blood for testing without having to repeatedly insert a needle into my vein to avoid any nerve damage. This was especially pertinent when my medical team couldn’t alternate using the cannula between both of my arms. This was to avoid any risk of developing Lymphedema in my left arm which had the full left axillary lymph node clearance. When the PICC line was not in active use, it needed to be flushed once a week to keep it clean. It also shouldn’t get wet, so I needed to wear a special waterproof central line cover during showers to keep it dry.
Since chemo has a cumulative effect, I was actually feeling okay during my first couple of cycles. I was walking every day and eating and drinking well. I'll get a couple of bad and or rough days with every cycle but I managed to get through it. Before you knew it, a pattern emerged and it quickly got predictable … Day 3 to 5 gets really bad but then I start to feel better and stronger every day after that, until it's time to start my next cycle.
Side effects started to appear after my third cycle, I developed oral thrush. My taste changed and I started to go off a lot of the food and drinks that I usually liked and enjoyed. I couldn’t have coffee or chocolate for example and eating chicken and meat made me very nauseous. This led me to a decision to become a pescatarian.
The steroid, which I needed to take to reduce the allergic reactions to the chemo, gave me stomach pain, indigestion problems and constipation. I used to have steroids with every chemo cycle, right before I’m given my chemo infusion and even for three days afterwards to give me energy and reduce the allergic reaction to the chemo. In the first couple of days after each infusion, it gave me lots of energy but also made me very irritable and vulnerable to mood swings. After I stopped taking them, I felt knackered for a few days later and struggled to get out of bed.
The thing that shocked me the most, was how much medicine I needed to take to get me through my chemotherapy treatment. For someone that had barely taken a paracetamol before this, I was on steroids, anti nausea and anti constipation meds, G-CSF daily injections to boost my bone marrow to produce more blood cells, codeine to help with the joints pain, eye drops for my dry and itchy eyes and essential oils remedy for my grey and brittle nails.
The side effects are very different for everyone, not everyone has the same reaction. So I was tracking my side effects in my hospital journal to anticipate when they are going to hit and help me predict my cycles. This way, I was able to plan good things to do with my family and friends on my good days and rest throughout my bad days.
I also found it very helpful to share my side effects with the other cancer patients with me on the chemo suite and in my MacMillan cancer support group. It was helpful to know that others were experiencing similar aches and pains and symptoms, and that this was something we were all able to relate to. Also since the reaction to the drugs we were on were often very similar, it was useful to share helpful treatments, products, coping mechanisms and complementary therapies which were effective in combating these side effects of cancer treatments.
Use all the help there is out there provided by the different cancer charities, they provide opportunities to cope with things like hair loss, to make new friends and connect with people. Remember you are not alone on your diagnoses and treatment journey, try to remain positive about coming through the other side, plan activities on your good days to give you something to look forward to on your bad days. Even on the bad days, you will find better ones around the corner.