So….here I am in my kitchen with a cup of tea, once again the fluttering, flapping wings of Cancer muffling all my other thoughts. It’s so irritating! They quietened a little after my first blog entry so worth another try.
I’m on day 18 of my first cycle - round 2 is on Thursday - so it’s a good time to summarise my Cycle 1 experience. There’s a fair amount to say so I’ll just start with Treatment Day - Day Zero:
Treatment was EC90 - Epirubicin (aka Red Devil) and Cyclophosphamide. Akynzeo anti-sickness drug and Dexamethasone (steroids).
I arrived at the hospital at about 9:30 and although the oncology department was short staffed due to illness that day, the nurses were lovely and I was made to feel very comfortable and relaxed. C was with me as support although, because I’m still in denial I guess, I didn’t feel anxious. It was more a weird excitement that things were finally going to start happening and I could just get on with it. I was prepared, ready and in control!
Bloods were taken and then….the waiting began…
There was concern as I had shingles (not badly but shingles is shingles), and then my blood count came back with low white blood count and anaemia (all a bit odd as I hadn’t even started treatment). The nurses wanted to check with my oncologist before going ahead with the chemo…..It felt like my body was trying to sabotage the treatment plan! It made me nervous as I’ve come to trust my body signals but aaarrrggghhh! I wanted to scream “Let’s just get on with it, I don’t care!!!” I really didn’t want to wait any longer, control was slipping through my fingers.
My oncologist was in clinic so we sat there until finally, at about midday, the green light came through - thank god!
I had decided to try the cold cap - I have long hair and the thought of losing it fills me with dread.
*Pearl of Wisdom* If you are undecided about using the cold cap, just give it a go from the outset - you can stop using it at any time but you can’t decide you want to use it later in the process. After one cycle of chemo, it is too late!
The cold cap wasn’t as bad as I thought it would be - pretty cold but not as bad as brain freeze when eating an ice-cream. After about 15 minutes, your head goes numb and you can’t feel any discomfort anymore. I guess your general body temperature drops as a result as I was a little chilly and sat under the blankets and the nurses gave me a hot pad to have in the bed with me.
I was also given the steroids (through my portacath - fabulous thing, see below) and this was the most discomfort I felt during the whole process to be honest - it felt like hot ants in my pants! Really strange but thankfully didn’t last too long. And then I was hooked up to a saline drip.
*Pearl of Wisdom* I would definitely recommend having a portacath. Mine is on the inside of my right arm between my elbow and my armpit and looks like a fat 5p coin under my skin. A lot of people have them put in their chest just below the collar bone but I chatted to a lady who was going through chemo before I got mine done and she said if she could do it again she would have it in her arm as it was less conspicuous and therefore less visible scarring. I suffer from keloid scarring so this sounded the best option for me. Upsides outweigh the downsides as far as I’m concerned: Downsides - operation under local anaesthetic to put it in, needles still puncture the skin to get to it during treatment (but you can get numbing cream if this is a big problem for you); Upsides - nothing sticking out to catch on things, don’t have to keep it dry (once it’s healed obviously), don’t have to have it cleaned / flushed every week, stays in for duration of treatment.
Eventually at about 3pm the actual chemo meds arrived. There was a lot of name and date of birth confirmations done which they have to do to make absolutely sure they are giving you the right stuff because it is so potent!
I was expecting to be hooked up to an IV so was surprised that the meds were in 3 great big fat syringes which the nurse had to administer herself, very slowly, in parallel with the saline drip. The epirubicin is bright red and looks toxic but I felt nothing at all as it was going in. I was warned about the effect on my urine turning bright red too - which it did instantly.
The process took about an hour and then I had to sit with the cold cap on for another 2 hours…zzzZZzzz.
*Pearl of Wisdom* If you decide to have a cold cap, definitely take some entertainment. I took the following to hospital:
I wore comfy clothes which allowed my port to be easily accessed
For the next round, I will take my fruit infusion water bottle and a beanie for after the cold cap.
The ward did have wifi and C sat and worked most of the day which was good as it made me feel that I hadn’t completely disrupted life. I dozed quite a lot too.
Finally at about 6pm it was all over. I was given my post treatment meds (more steroids to take over the next 2 days). I think it it wasn't for the hiccup with my bloods, the process would have taken about 4 hours in all.
Leaving the hospital, it all felt weirdly anticlimactic…
We had a quiet drive home. Feelings of guilt about what I had just put into my poor body (it felt like it had become its own separate being) - I imagined it thinking “what did I do to deserve that?! We were perfectly fine and now you’ve stuck needles into me, hacked into my arm and the latest is trying to poison me!!!”, apprehension about what was in store for me and the surrealism of sitting in C’s car for the first time in months swirled about in my mind.
What a strange thing living is. I read somewhere that although our lives feel so important to us, we are no more important to this universe than a daisy. The universe existed before the daisy flowered and it will exist long after it has withered and died. But when it’s leaves unfurl, the bud grows upwards towards the sunshine and the delicate white petals open, the beauty of it becomes an inseparable part of the world which would not be the same without it. We shape the world and the world shapes us. I wonder what shape I am going to end up.
