Yesterday morning, following a light breakfast with Lucy in Marylebone, we got to the LOC at 10.30am for my appointment. It was good to have seen the facilities the Friday before, so it all looked slightly familiar already.
The receptionist showed us the way to my pod in the treatment rooms and asked us to wait for the nurse. Earlier that morning I thought I’d feel huge anxiety but found myself on the other side of the spectrum, feeling quite upset and teary. I suppose it’s like my friend Karen said in her email that arrived overnight: it only really all kicked in when she went to her first appointment. I guess it was the same for me. Plus the news of the day about David Bowie didn’t help much.
I had a chat with the nurse who explained what would happen throughout the day and was given my first anti-nausea pill (Emend). We then proceeded to try different sizes for the cold cap. Given the choices of small, medium and large, I felt that the large inner cap and a medium outer cap (to keep it tight) fitted more of my head. Apparently it’s very important that there is no gap between the cap and your head at the very top. Quite tough to find the right size and get it fitted properly. I also tied a scarf around it to keep it tighter.
As I opted for no PICC line, she then inserted the cannula which was a non-event. Hit the vein no problem with a bit of stinging but no big deal. Just as well I never had an issue with needles. Then I was on drip with saline I believe to keep my hydrated.
Next up, the cold cap. I had taken a paracetamol an hour before to minimise any headaches. The nurse explained that the first 10 minutes are the worst. With that in mind, I was prepared to be patient. She sprayed my hair with water and applied conditioner (eases for cap removal afterwards). Once fitted, the Paxman machine was switched on and the cap became increasingly colder. Remember those moments when you greedily bite into an ice cream and put so much in your mouth that you feel your forehead and eyes hurt for a few seconds? That’s basically the feeling. And after 10 minutes, there was no more pain. Next up, some more anti-nausea meds, this time intravenously.
Then it was time for the first of the EC – the Epirubicin which looks like a pink juice and was given in 2 large injections, slowly by the nurse over the course of half an hour. Time passed quite quickly. I imagined the pink going in, seeking and finding any potential stray cells and sticking itself around these.
Another half an hour later, she came back with the C – the cyclophosphamide which was infused via the drip. Once done, I had to wait another hour or so with the cold cap on. It has to stay on a certain amount of time before, during and after treatment. The cannula was then taken out and cap removed. Quite a relief to have it off but altogether bearable. The pharmacist arrived and explained the various anti-nausea medication to be taken for 3 days including the Emend, small dose of Steroids (Dexamethasone) and Domperidone (sounds way too much like champagne).
He also gave me a booklet that highlights side effects in green, amber and red with respective actions to take depending on colour and approved some of the supplements I’ve been taken (curcumin, D3 etc.). He said he’d be checking and confirming the chinese herbs in due course. I was also given an injection to take home and administer 24 hours later to boost white blood cells.
We left the LOC and went home. I lazed on the couch while Lucy snoozed as well and did some of her studies. Then the hangover kicked in, together with a headache, cold feet and a cold nose – no doubt from the cold cap. The nausea literally felt like a hangover, on the edge of being sick but not quite enough. Came close to a couple of times but kept drinking water.
Lucy left and Mati came over, made me some baked potato and sweet potat – the only thing I felt like eating and stayed the night which was comforting. I felt pretty nauseous all evening with a strange taste in my mouth. Went to sleep around 10.30pm and slept on and off all night, mainly due to having to go to the bathroom every two hours from all the liquids. No nausea at night. Lots of Deepak meditation audios during sleep cycles.
I woke up this morning feeling fine and I’m wondering whether either the medicines themselves or the fresh ginger tea is making me nauseous. At least today’s hangover feels much lighter than yesterday. I decided to cancel meetings though as feeling too tired and a little dizzy. Managed to do some work and then my friend Laura spent the afternoon with me. Great to have some company, relax and chat. Gave myself the injection at 2pm with no issues and have since been relaxing. I think I’ll be ready to leave the house tomorrow and go for walks and for a meeting. I have definitely lost my appetite and the thought of certain foods induces nausea, like seafood and meats. I had a big breakfast of coconut yoghurt, musli & strawberries and have been snacking since. Feels better to snack then have big meals. I ordered a silk cover for my pillow (as recommended by people) and look forward to trying that out. Both to keep cool at night but also to be gentle to my hair during this time.
Prior to starting the cycle yesterday, someone on the MacMillan forum had recommended listening to inspirational hypnosis and so I did. In one of the sessions you’re asked to speak to your body and explain what is about to happen so that you’re ready. I found that really helpful, amongst other things. So now it’s been over 24 hours since my first chemo cycle and I’m riding small waves of nausea, manageable! 1 down, 3 to go!