Here we go again. I’ve just had my steroids. It seems that I have been taking my steroids wrongly and only having half the dose. This would go a long way to explaining the roughness of the last cycle. They’re now given me the correct dose with very few recriminations, of which I’m grateful on both counts. Something I couldn’t in good conscience blame on chemo-brain, having made the mistake too early on to excuse. Kat and Adam will be double checking meds from now on and we figure between my chemo-brain, Kat’s CFS-brain and Adam’s depressed-brain we can scrape together one functional organ.
Lilah is here for this time as she finds it much easier to cope with all this if she’s sees what’s happening. So she’s eating grapes, watching TV and charming all the nurses. We’ve just ordered our gourmet lunch, cauliflower and fennel soup with falafel salad. I’ll post a picture when it arrives. It’s pretty chilled this time and my veins are less uncooperative so the cannula went in first go. An all round better experience today and with the extra steroids I’ll be bouncing off the walls. Feel free to send me any intractable problems you’re having as I’ll be in the middle of a 48 hour brain storm soon ; )
The last test for the foreseeable future has been completed. Phew. No more clunking and banging MRIs or being randomly irradiated. I will miss the CT scan tracer though, mmmm whiskey warm. The one I did today was a Bone Scan and it will see if the cancer has spread outside the breast and to my bones. Because breast cancer LOVES bones and lungs. This time it was a rather more radioactive substance called Technetium-99 that was injected into my upper arm. The needle was even encased in a metal casing. Apparently the Technetium-99 rides along with some phosphate, the phosphate sticks to your bones and the scan detects the Technetium-99. This element is rarely found naturally and the stuff they used was probably a bi-product of the Nuclear industry. How ironic. It is found in red giant stars though so that makes it a teeny bit more exciting.
I am still radiating so I had a separate area of the waiting room reserved for me, see above photo. The rest of the patients looked at me with a mix of envy, fear and classic British “Who does she think she is, with her own waiting area?” I had to pee in a separate toilet and I can’t cuddle Lilah or pregnant women for the rest of the day. So stay clear, reproducers. The scan itself was pretty stress-free. My theory is that they deliberately started me off with the hellish MRI so that every test that came after I would embrace with the sentiment, “It can’t be worse than the bloody MRI!” The technicians set me the challenge of guessing their nationality so I spent the 23 minutes and 24 seconds of the scan listening into their conversation and weighing up their names, appearance and demeanour. Catholics names, dark hair, friendly, slightly Eastern European sounding language.. Portuguese. They seemed very surprised I guessed correctly. They didn’t know about my secret weapon of having spent 6 months editing over 80 hours of footage from Brazil. Suckers ; p
I did get a good look at my skeleton although they wouldn’t let me snap a pic, so sorry you don’t get to see my ultimate insides. I’m now resisting the urge to go internet-diagnosing from what I saw. The results will be ready in two weeks so time to put it firmly out of the mind and deal with what’s in front of me. Next up is a blood test tomorrow morning to see if my immune system has regrouped enough to kill it again. If all is well, then chemo round 2 is on Wednesday. Onward.
Adam just sent me a link to a very well-timed article on the BBC news website about food to eat when you’re getting chemo. The article’s title completely chimed with me ‘Cancer made me want mashed potato’ as all I could eat for days was extremely salty instant mash. Having made this great plan for a cancer menu full of green smoothies and 7 fruit/veg a day when I was reduced to rich tea biscuits and instant mash, I felt a severe nutrition fail. This article made me feel a lot better about my bad food choices. When I felt better, I was munching down Desperate Dan-style bowls of pasta. One of the only upsides, ok only upside, is that fat in my body is being broken down so it seems I can get away with these fat/carb dense meals. I just ordered the cookbook so if anyone knows someone getting chemo, this could be a good pass along.
Lilah and I just pulled this lot out of my head. I guess it won’t be long now before it gets to the point where the patchiness is obvious and the clippers come out. I thought I was OK about the hair loss but today, seeing it happen, has been quite unsettling. I’m not sure if this is just to do with the hair loss or because I think I’ve caught Lilah’s cold, I’m not eating as healthily as I could be, putting a bit of pressure on myself to do a lot of jobs on limited energy and the washing up pile is growing exponentially. Strangely, the dirty dishes are bothering me more than anything else. Perhaps because it’s the cancer of household chores, replicating out of control and the task I have to tackle that there’s very little help anyone can give with. Maybe it’s time to buy some paper plates.
I did do a bit of research on hair this morning in preparation for this post. As I was struggling to find a good study on the sociological importance of hair in cross cultural perceptions of attractiveness, I realised maybe I was pushing myself too hard. I’m not the only one. Adam sent me this link to an article about a woman with breast cancer who took a picture of herself EVERY DAY during chemo, wearing a new kind of hat and raised thousands of pounds for cancer research. I was impressed. But I noticed she said that some days it was all she could do to drag herself out of bed to do the photo and then go back. I found myself wondering if this was a case of committing to something other than getting well that was actually detrimental to that goal. Is there this pressure we put on ourselves to be amazing and go even beyond normal expectations when we’re sick. To prove ourselves superhuman. And does this in turn put a lot of pressure on women with cancer who are not engaged with this seemingly Herculean tasks?
As usual with all things, I think the answer is complicated. If the blog is helping me feel better about myself, then that in turn will have a positive impact on my mental health. Being mentally well is one of the powerful things I can do to aid my recovery. If, like today, the bell curve dips towards the negative then I’m actually doing damage. The trick is to know the difference. So instead of writing an in-depth socio-political-feminist analysis of hair loss, I’m stepping away from the keyboard and going back to bed with a good book.
I just got back from a test to see if my kidneys are withstanding the drug Herceptin that I’m taking. I had Chromium-51 injected into me which is radioactive. Chromium is an element. Come on, I can feel your eyes glazing over as you try and dredge up the 15 year old you staring at the Periodic Table in Chemistry class. Stay with me. Although I must admit the reason I listened most attentively at that age was the painful crush I had on my Chemistry teacher. Chromium is the element that gives rubies their red colouring. And interestingly was found on the tips of the weapons of China’s Terracotta Army, thus keeping them rust-free for 2000 years or so. Chromium-51 is an isotope of Chromium, meaning it has more neutrons than protons. Anyhoo, they didn’t give me any more than you would normally pick up walking about for one day. The technician reassured me that had I been a resident of Cornwall, eaten 500 bananas and flown anywhere, I’d be in more serious jeopardy.
The most tedious part was listening to the 80s radio show they had playing in the reception and going back after 2 hours, 1 hour, half an hour and half an hour again. It was like the Groundhog Day of bloodletting. Worryingly, there was this sign above the entrance that didn’t inspire confidence.
Luckily the unit is in its death throes and will soon be demolished and replaced with a new shiny building.
So I’m going to relax now, watch some Hercules with my kid and hopefully stuff my face with spaghetti bolognese. I’ve been craving huge piles of pasta and I’m letting it happen while I can, before the next round of chemo robs me of my appetite and I have to go back to dry rice crackers and boiled water again. Thank you my Bosomites for all your kindness after last night’s post. I am feeling much renewed and energised and the hurt is eased by your love and warmth. Once again, you rock!
I’m having trouble sleeping tonight and sorting through some feelings, so I thought writing in my public diary might help. A Bosom Buddy has fallen. It warned me in the literature that some friendships wouldn’t survive cancer, even if I did. I thought I’d escaped that prophecy but alas a close friend has chosen to bow out and focus on her own family. I understand totally but it still hurts.
It made me think about the nature of relationships and how some are like orchids, needing constant vigilance and fragile in tough conditions. And then some are like the mighty mangroves with an incredible capacity to adapt. Then I started to reflect on those mangrovey relationships and what they had done for me just on this one day.
I started the day with a photo from Kata in Australia, blowing me a kiss. Then came a text from my steadfast mum, checking in, as she does every day. A call from Kat, who has just flown in from Spain to be with me for the week of my next chemo. WhatsApp pings with messages from Sam in Leicester who distracts me with wedding planning dramas for her up coming nuptials. And Sam in South Africa who goes out in her PJs to snap a pic of a nearby wildfire, just to bring me vicarous thrills/terror.
That’s not counting the many of you Bosomers out there who I know are constantly thinking of me. And my precious hubby who waits on me hand and foot and is living the lives of both of us, including all the work that goes with it. Finally my wonderful kid who cuddles me and calls me beautiful even with sores on my face.
There’s a lot of you mangroves out there, a whole forest of you. I rest my head against your strong trunk this night and count my blessings that I have you. Orchids are overrated anyway.
I was wondering if you would all like to know more about why I ended up in hospital for a couple of days, so today my post is dedicated to ‘neutropenia‘. Not to be confused with 70s classic mods movie, “Quadrophenia“. Although there are some parallels between the super youthful and aggressive ‘neutrophils’ with the mod youth of the past. Both chased around looking for trouble and used chemical substances to enhance their performance. The video above shows the neutrophils at work, ingesting bacteria with glee and abandon. Neutrophils are short-lived (5-7 days) in the body but do make up 40-70% of your white blood cells. They are also the first responders to bacterial infection. When my chemotherapy drugs went in, they killed every cell that was in the process of reproducing. Because these neutrophils are dying and reproducing at such a fast rate, they are one of the first to become collateral damage. But it does take a few days to completely annihilate them. So about 5-10 days after chemo are when my poor neutrophils are at their lowest before they start recovering again. So for those days if I get any nasty germies in my body, I’m fooked. I literally have no defence. The rockers have beaten the crap out of the mods and they’re all out for the count on Brighton Pier.
When my temperature started to rise it could have been because, as decimated as my immune system was, it does still try to mount some kind of resistance to an infection. Also because I was feeling unwell generally, to be on the safe side, they called me into the hospital. Within an hour I was on antibiotics which served to replace my own immune system. When they took my bloods my neutrophils were at 0.1, almost non-existent, making me ‘neutropenic’. This is not unusual though and half of chemo patients will become neutropenic. But as the doctor said, because they can see it happening, they have to take action. It all ended happily when the wee neutrophils came back up to 2.4 the next day. The normal range is 2.5 – 7. The biggest danger though is that I get a small infection and don’t get the antibiotics quickly enough and I go into sepsis and there’s no way to sugar coat this, it could be deadly. Anyway, la la la, that didn’t happen.
To end on a happy note. When they doctors had established I was not about to drop dead from sepsis and I was getting the antibiotics, they just kept me in an extra night to keep an eye. I was so tired that I tried to sleep at 7pm, with an eye mask (they keep the lights on until midnight, just like in jail) and ineffective earplugs. The nurses changed shifts around this time and at the bottom of my bed, thinking I was sleeping, one nurse talked about me to the new one. “They haven’t found any infection and she’s ok. She just needs some tea, love and sympathy.” Not tea and sympathy, because that is actually a little bit glib. But tea, LOVE and sympathy. And he said it in a completely compassionate and caring tone, even though he thought I was asleep and there was no-one to hear. It still brings tears to my eyes. Even though my own self defence force had abandoned me, I felt very strongly that the nurses and doctors were my home guard, shoring me up physically and emotionally.
Today I am feeling a lot stronger and my body is definitely on the mend. I am having a couple of naps a day because I get this heavy, jet-lagged feeling after being conscious for a few hours. My skin is also a bit tender and sore, especially around my eyes and lips. But everything else is improving and I can actually eat fairly normally. So I should be fighting fit by the time the chemo goes in again and we go on this merry-go-round once more. At least this time, we’ll know what to expect.