Today’s hospital visit turned out to be long. We long ago established that I am over efficient in the arriving early department when it comes to clinic appointments. Today was no different. Actually, cancel that. It was different. This time I had permission to be early. You need a blood test, they said. Come early, they said. So I did. And was greeted with the following notice:
Patients seeing The Doc need to be aware that his clinic is running approximately one hour late
I arrived early. He was running late. Excellent. Still, the blood letting took longer than expected so that filled some time. My veins were not playing today. Which was a shame because the vampire stabbing me was effusive in her praise: ‘You are looking lovely today,’ ‘Your scarf is fantastic, did you tie it yourself?’ (I did ponder whether I could get away with, ‘No, I accosted a passing stranger and forced them do it’ but thought probably not), ‘I love that shade of lipstick!’ and finally ‘That’s a great top, where did you get it?’ (Matalan. I shop in all the best places, don’t you know.) On the whole, I think she liked me. Which made it rather embarrassing that my veins were feeling shy.
Once I finally got to see The Doc, he looked mortified when I gave account of my nausea etc. A pharmacist was summoned and a new cocktail has been prescribed. I did a lot of smiling and nodding during this consultation. I cannot remember for the life of me what has been agreed upon. As luck would have it, I do not have to wait long to find out! My blood tests show my cells have recovered sufficiently for the next round of poisoning to begin. This time tomorrow I will be feeling grim but one third of my treatment will be completed. Good news indeed.
I feel I should begin by saying I have no intention to post every single day of my chemo treatment with what amount to little more than lists of my latest side effects and symptoms. Because this is round one, I am interested in charting my progress to give me something of a baseline. Of course, I will probably discover that this is no help whatsoever, but just at the moment, it feels like it might be. And I have little else to do.
So on with my day. It has been, on the whole, dull. My scalp feels as if it is almost buzzing. Like the sensation of having just removed a too tight swimming cap that has been worn too long. At times it tips into being itchy. The general hair care advice is to leave it alone as much as possible. To wash it hardly at all, to brush it on high days and holidays only and to generally treat it with kid gloves. Do this, and you may prolong its life. I have a few problems with this advice. Mainly, it is going to fall out. However gently I treat it, as I have chosen not to use the cold cap (restricts the blood flow to scalp in an attempt to prevent the chemo drugs destroying the follicles but is patchy in its effectiveness and can cause headaches which I am prone), whatever I do it will fall out. As it happens, my general hair care routine generally revolves around neglect but even so, Day 6 and the Great Shedding is only days away.
My biggest concern is that the Serious Delinquent, in charge of the clippers for when the need arises, is currently away! Rude and thoughtless, tsk! So my follicles need to hold tight for the better part of a week until her return. Let us hope that the regular bathing of sweat my hair keeps receiving, encourages them to keep a firm grip. I have no idea why this is happening. My head has started sweating. At times, profusely. Nowhere else, just my head. And not necessarily when I am hot. Bizarre.
I am still silly tired which is getting to be annoying. And I spoke a little too soon about not being nauseous. However, today the Captain and I did have an outing. We went to our local cathedral. We did not linger. The organ was being tuned. We value our hearing. A trip for another day.
I have so nicked this title from my mate. I probably could not have punned that on a good day. With all my neurones firing. And today I confused ‘ordinarily’ with ‘normally’ when talking to the Captain:
How many jars of jam would you get with this recipe, I seem to have more than I expected?
Well, normarily I get about one more jar than you have.
Fortunately, he speaks fluent me, so we were good. It even took a while for me to compute that I had conflated two words.
Today I have been grumpy. And nauseous. And tired. And nauseous. And cold. And did I mention nauseous? I have been tired too. Which is odd because given how much I have slept, I should have been gambolling about like a spring lamb. I slept all night till 7am, then another 2-3 hours this afternoon. And guess what? I am still tired! Where is this buzz I hear the steroids give you? Actually, I do get that. It is not pleasant. More of a jitteriness than energy I have found. I am managing the nausea better. And I think it is improving. Food is essential, little and often. I shall be the size of a barrage balloon by the end of this with all the nibbling. It feels very counterintuitive to eat but it definitely helps. And all things ginger are a must. Ginger beer, ginger nuts, ginger tea, ginger cordial, crystallised ginger, ginger water. If it has ginger in it, then I’ll knock it back.
Today I was hoping to investigate the possibility buying some Sea Bands but forgot at first, then felt too lousy and then was asleep. I should have just asked the Captain. But I forgot to do that too.
Yesterday got worse. The nausea was hideous and horribly debilitating. I curled up on the kitchen sofa, looking green, clutching a bowl which I never actually used but would not give up in case. The box set of Call The Midwife was wonderfully distracting and kept me going until my next lot of meds could be taken.
As well as the nausea, I developed diarrhoea – a delightful addition to my day. I had been warned by another chemo endurer that Sudacrem could turn out to be my best friend. She may not be wrong. Although at the moment, I would have to say that Sudacrem is lagging behind my antiemetic cocktail of Emend, Domeperidone and Cyclizine in the best friend league table. Besides these, I have also found my tongue to be tingling and sensitive; my mouth, dry; my limbs shaky and aching; and I have periods of coldness. The tip of my nose is icy. The day has been hot and humid but for much of it I have been huddled under a blanket.
The steroids I am currently taking have given me moments of almost manic restlessness but thankfully I am taking them early enough in the day for their effect to have worn off by bed time. At least I hope I have. Last night, I slept reasonably well, all things considered. I was asleep soon after 10pm, woke at 1:30am dozed on & off till 4am when the nausea sent me off in search of a ginger biscuit. I came back to bed having discovered the ginger beer. Oh wow! That stuff was brilliant. I spent much of my career as a midwife suggesting pregnant women drink it but have never had cause to myself. It felt vaguely decadent drinking ginger beer and nibbling biscuits at 4am – what can I say? I don’t get out much. It did the trick and I was sound asleep by 4:30am for another 3 hours.
During my ginger beer and biscuit break, I did some pondering on the nausea problem. You see, I am meant to be on the mega good stuff of nausea control. So either this is how it is going to be – possible; or there is a reason – preferable. On my take home pack of Domperidone, the instructions clearly state to begin taking them before leaving the hospital on my day of treatment. However, my nurse suggested I wait until Friday (today) as I would be fine with just the Emend. So this is what I did. Hmm. Also, I take Carbamazepine for my facial neuralgia. It turns out in some cases this lessens the effectiveness of Emend. Double Hmmm. I am reluctant to skip my Carbamazepine unless I have too so I am working with the Domperidone today. So far so good. I have still been nauseous but it is a lot more manageable.
I haven’t actually slept today. Lots of slobbing. I thought of going for a walk. But then it rained. Phew.
You do not have to know me very well to know that I enjoy cooking. I run a food company for goodness sake! Prior to being diagnosed with cancer, I had only ever lost my appetite once when a cold removed my sense of taste for a few days. It is reasonable to say that I love food and all things relating to it. So the prospect of the FEC-ing chemo interfering with that is not a happy one.
I think everyone associates chemo with nausea and vomiting. I know the medical staff load you up with anti-emetics so I am hoping this will not be too bad. Following on my puke-tastic time after surgery I have been promised Emend, a top notch drug. Only time will tell if it works, but I am hopeful. However, there are other prospects. Sore mouth, bleeding gums, metallic taste, and all sorts of other delights. With this in mind, the Captain bought me The Royal Marsden Cancer Cookery Book. It is lovely. All sorts of delightful recipes with a grid listing which are suitable for particular symptoms. So for a sore mouth, one might be tempted by a Blueberry & Avocado Smoothie or Pea & Pancetta Risotto. For nausea, there’s Green Tea & Peach ice lollies or Elderflower Jelly. While still on the mouth theme, how about Cinnamon French Toast with Apple & Blackberry Compôte or Mongolian Stew for changes in taste? All sounds a bit delicious to me.
I have begun to fill the freezer with such goodies in order to have some things on hand when required. Inevitably the recipes have had a little tampering. I am not used to cooking while having painted nails so the Celeriac, Lemongrass & Lime Soup with Nail Varnish Chippings should be interesting. When I have done a few cycles, I will try to reflect on which recipes I found most helpful.