Round 7 (costume change)

 Part 1 - 30.06.26

The visit to the doctor gave me no breaking news. This time around, the doctors in the room were a young doctor with Indian heritage, who has probably been the one I've seen the most, my main doctor, and a young doctor in training.

My main doctor said that there were more faces today because of the doctor in training - this is a university hospital, after all; in the women's clinic there is always a student doctor on site. To which I replied that at least I was getting some familiar faces. The Indian heritage doctor was among those who responded when I had the reaction in my first chemo treatment round. She has been in at least two pre-round consultation sessions. She was one of the doctors helping assess the risk of my increased blood pressure during one of my last rounds; one time, when I had a mild reaction to the treatment again, even after getting the antihistamines beforehand.

And my main doctor, well, she was the one who gave me the diagnosis. She has been present in every consultation after an MRI. And I have spoken with her on the phone a couple of times too. She is the only doctor whose name I remember. Because it was explicitly said to me, as one of the things I should remember. Like all the medicine that I get. But even the medicine, I only remember the names of a few by heart. With all the roster of doctors and nurses, it's difficult to remember names. But faces, that is a whole other story.

What I was told this time is that, while the treatment has fragmented the tumour, the area it occupies is still large. If I were to be operated on, it would be a very invasive operation. The word the doctor used was omfattende, which translates better as "comprehensive." My main doctor wants the tumour to shrink further. Ideally, to nothing, she keeps saying. 

I know. I have also wondered: if it shrinks to nothing, is it still necessary to operate? My brain keeps responding yes: to take away dead cells. But I haven't asked directly. 

I did ask after the results of my blood panel. My immunity is reduced, but still not to concerning levels. My haemoglobin has recovered. I am not losing weight. Quite the opposite. I keep telling myself that it is water. My doctors support that belief. I trust with my brain and doubt slightly with my heart. Because water in the body has always only meant: well, you're just getting fat.

But getting fat when one has cancer makes people think that one is looking healthy. So, silver linings?!

My hope that the operation would happen sooner was not confirmed. So, my reading of the radiologists' reaction to what they saw in the MRI results and their surprised faces at an operation only in October must have been my brain fantasising. 

What will likely happen now is that I will have two rounds (instead of 3), before a new MRI. With a new combination of chemo drugs, Epirubicin and Cyclophosphamide. The combination is called EC90. A new set of side effects (some are the same), with emphasis on nausea and forstoppelse (constipation). I am likely to urinate red a few days after the treatment, because of the Epirubicin, which is red. Hair loss and mouth sores are also on the list. It may also affect my heart muscles.

This EC90 combination apparently has a lower likelihood of reactions. No need for antihistamines. And neuropathy is not among the side effects. In preparation for the treatment round, I also had to take dexamethasone once (instead of over 3 days). This was one of the drugs that was thought to be causing the increase in blood pressure. Together with the dexamethasone, I had to take one new drug, Akynzeo, for preventing nausea.

After two rounds of this combination, they will decide whether to change to a third combination of drugs. Then comes likely the operation. Then radiotherapy, for three weeks every weekday.

When I told the main doctor that I had heard that radiotherapy was worse than chemo, she almost burst out laughing and assured me that it wasn't. Again, my brain trusts her. My heart tells me that personal experiences are true as well.

After the radiotherapy, I go back to Phesgo. It cannot be taken together with this new treatment combination. I asked if that didn't reduce the effects of the treatment, given that this drug attacks this cancer specifically. She assured me that the new combination attacks the cancer cells (and everything else) just as efficiently. 

My brain is suspicious because we seem to be reducing from the atomic solution to something softer. A milder missile attack. I wonder if the new combination, after the EC90 will be something like a drone attack. This "demotion" on the strength of the onslaught reminds me of Uma Truman in Kill Bill, when she finally confronts Bill and asks him why he tried to kill her, and he responds that he overreacted. 

Source: https://www.deviantart.com/skinzyvinsmoke/art/Kill-Bill-Movies-Folder-Ico-v2-658213595

Part 2

The treatment was scheduled for the morning. Coincidentally, in the same room where I had the very first round of treatment. Now I walk confidently in this space. It is still being renovated. The nurse, a new face, apologised for the noise,  which I hadn't registered until she mentioned it. She assured me that they were in the last section of the floor.

She introduced herself, saying that she didn't think that we had met before. The literal term in Norwegian is hilst før (greeted before). There is an important distinction here, because during the session she said that she had been one of the nurses responding to my latest reaction to the chemo. But since she hadn't introduced herself then, we hadn't properly met/greeted.

The nurse checked my name and ID number while looking at her papers. The number is a unique number that is used for everything across multiple state agencies and banking. The number makes you uniquely you within the Norwegian system. They call it fødselsnummer (birth number). It is the number assigned at birth or when you are "born" (registered) for the first time in the system, like in my case. The first 6 numbers are our birth day, month and year. Followed by a sequence of five unique numbers.

This ensures that blood samples are not mixed, the wrong medicine is not given, etc. Of course, care that mixups don't happen in samples and medicine is not unique to Norway. Most systems have a way of trying to ensure this type of care. I still find it fascinating how nurses ask obsessively for our number to check. Even when they know. We, the patients, have to be the ones giving the number. Over and over again. Even during the same appointment, every time they are to give a new medicine. It sounds tedious, but I am sure that it saves lives.

The nurse explained that I was going to have a new combination of drugs. She didn't expect me to have a reaction, but with my history, she prepared a syringe with antihistamines. Just in case.

I warmed my hands under the standard warm pillow. I commented that my veins tended to hide. She said that she wouldn't stick the needle until she saw a vein. After examining both arms, she found one in an awkward position.

She listed all the scary parts of the treatment. The content in the first IV bag, containing Epirubicin, could burn if it came into contact with the skin rather than entering the bloodstream. It is red. I would pee red for a while. I had to sit still. She would be there the whole time and ensure that I didn't move the arm, so the solution didn't drip outside and burn me. But it would be quick. About 15 minutes.

Combination EC90

She would be strict (about enforcing my sitting still), she said. I believed her. She carried a no-nonsense authority demeanour, mixed with confident care and kindness.

At some point, the nurse explained that the combination now is usually a first line of treatment. Honestly, if this one has fewer side effects, I am happy that I started with the worst and am moving to something milder.

After the first IV was finished, I could move, while the second dripped. Between one and the other, a saline solution washed clean the tubes and into my system. Saline solutions always feel clean and fresh.

They did not monitor my blood pressure this time. The whole session lasted exactly one hour. No drama, no fuss. I did feel a little woozy immediately after the session. I went to the library, sat, and took a couple of calls until I felt myself again. Now I just have to wait and see how the body will react to this combination.

My precious

 Today I woke up feeling like Gollum. I told my partner as much, and he politely said, "You shouldn't think like that," as he tried to hold back a chuckle. Deep down, he agrees.

Source: https://www.deviantart.com/grees19/art/My-Precious-745977653 (Credit: Grees19 on DeviantArt, Copyright: Grees19)

It is impossible not to. Thin silver strands venture out of my scalp. A persistent eye infection has plagued me for 3 weeks and has now migrated from one eye to the other.

Neuropathy makes my movements awkward and slow.

I don't feel sad about looking like Gollum. I feel more amused. I do wonder what my precious is. Is it life or simply health? Is it too greedy to live so... I want to say, "desperately"? But I think the more appropriate term is "instinctively." 

What is my true greed here? Maybe to imagine that life after this will return to how it once was. Or the illusion that life can currently be lived as I once did.

I think I have expressed this before. As grateful as I am for benefiting from the best treatment available, there is something unsettling about napalming the whole body to take control of a smaller region. Of course, a region that if left to its own devices would wreak havoc on the rest of the body... But it still feels like killing a mosquito with an atomic bomb.

When nature reemerges healthy (?) and unincumbered, like in Chornobyl... I will be vindicated... in my greed. 

Third round (Part 2)

08.04.26

Today I am alone in the treatment room. In an area of the floor where renovations are underway. From time to time, a drill... some banking. But otherwise it was still quite quiet.

The same nurse from last time was scheduled to treat me today. She greeted me with a large smile and a takk for sist. This literally translates to "thank you for the last time [we met]." Simplified, it is another way of saying I am glad to see you again since we last met. Or maybe not that simplified. The actual expression is the simplified way of saying it...

Norwegians are a thankful society. For example, they thank for the meal (with a takk for maten or, in western Norway, takk for skiftet, which thanks both for the meal and company). Thanking for the company or for having spent time together has other variants, such as takk i dag (thank you for today) or takk for meg (I am grateful [for the time we have spent together]).

They are also a very thrifty society (though this may have changed a bit in the younger generations). This is noticeable in how they are economical with their words, and a short expression contains a lot. My favourite, and by far the most accurate illustration, is the Lesson in Norwegian below:

Source: https://www.reddit.com/r/Norway/comments/hlt7b5/how_true_is_it/#lightbox

Mozambicans, on the other hand, are more verbal and repetitive. But I find that we have some commonalities. We also thank a lot (and not just in church or God at a meal). Often, in situations where non-African Portuguese speakers may not understand. I realised this one time during an encounter between one of my sisters and one of the house guards. She was born in Mozambique, has a Portuguese mother, and was raised in Portugal, but moved to Mozambique in her mid-to-late teens to live with our father. She was unhappy with something and scolded him. In the end, he thanked her. She came up to me, baffled, and said, "Did he just thank me?" I sensed that she thought that he was slow to comprehend. But for me, it was natural. There was a power imbalance; even though she was much younger, she was the boss's daughter. What I understood was that he was thanking her for calling his mistake to his attention. Possibly, that thank-you also included an attempt not to repeat it in the future. I understood THAT "thank you" differently because, even though I have lived in Europe for long periods, both my parents are Mozambican, I visited relatives elsewhere in Mozambique growing up, and I did fieldwork across Mozambique when I returned from training as an anthropologist.

We also have an equivalent expression to ellers, which is simply novidades? (news?). Both translate to the proverbial "how are things with you and your family?" A (Portuguese) friend of mine also noted that (some) Mozambicans are skimpy with "not yet", saying only ainda (the "yet" part without the "not" - não in Portuguese). He found this genius, being that there would never be an instance where "yes yet" would apply. Norwegians have not found this way to save by dropping the ikke (not) from ikke enda/ennå (yet).

Anyway...

The room had been recently finished. It didn't have a hook for a jacket. And the nurse complained that the cabinets were missing drawers. I made a snarky remark that if nurses had decided on the furniture, they would have noticed that detail immediately. She agreed. Looks like even here, some processes lack participation.

Later, another nurse came with an electronic device, looking for a place to put it, but found the room too small and already full of furniture and other appliances. I guess change requires familiarisation and adaptation. I did have all I needed for my treatment, though.

Again, the same routine. Antihistamine first, Phesgo second. After a prescribed time, the chemo. The catheter was inserted in yet another place, on my right arm this time. It required two attempts. The first didn't hit the vein. The nurse said that the veins were very deep under the skin. I wonder if this is where the myth about darker skin being thicker comes from. I don't think she thinks this. She just noted that the veins were deep and therefore less visible.

The antihistamine knocked me out, and I slept through half of the treatment. I woke up when the machine started beeping, because the drip had stopped. It took a while for the nurses to come. I am not sure they could hear the beeps. When the beeps became more intense and urgent, I pulled the emergency cord to call them, still drowsy. I fell asleep again when the nurse came to attend to it, with her encouragement. I think a second person came in to check on the kerfuffle with the machine.

I eventually came out of my slump, somewhat midway through the treatment and started reading a text in which I had to comment on a meeting after I was done with the treatment. I would come to partially regret having booked something on the same day of the treatment. 

The machine beeped again. The nurse didn't hear it again. I pulled the cord after the urgent beeps began. A nurse eventually came; the one who had been attending me had gone for lunch, and at that point she also measured my blood pressure. They measure three times in total. That was going to be the last. She measured several times, because it was higher than the other two. She said that she would measure later. 

When the treatment ended, the first nurse had returned from lunch. The other nurse came to let her know that she needed to take my blood pressure again. It was still high.

I think that the fact that I was working didn't help. I had decided to make these moments about me and my regeneration. That was a good instinct. I should be firmer on that.

But old habits are hard to quit. Just like any addiction. 

Third round (part 1)

07.04.26

It's that time again.

The day was sunny and warm. I used my spring jacket for the first time. And no underpants (stilongs). A normal feature during winter.

This is from another day, which was actually colder, but still sunny (albeit cloudier)

I had a list of things to ask the doctor. It was a new doctor who saw me this time. She asked me the routine questions about symptoms, and was confused about one of them. She said that she would ask the doctor on call. 

The doctor on call today was the doctor overseeing my case. She will not see me every time I have an appointment, but I am her case, which means that she is following my progress. She was there the day they gave me the diagnosis. She looked happy to see me today. Rather, I assume she was happy with how I am responding to the treatment.

Both doctors measured the tumour. It is standard to have two measurements. It has now reduced from 57-50 mm to 38-38 mm. My doctor said that this is 'a substantial reduction.'

I have a PET/MRI on 20/04. After that, in the next round, we'll discuss the treatment plan further. Possibly even how many more rounds and the timeline for the operation. My doctor will be on call then, too. She checked and informed me, smiling.

Other than that, my immunity is good. Last time it had reduced slightly. It has now bounced back. The first doctor pointed out in particular that the kidneys and liver function looked good. My weight is holding steady.

And the symptom that confused the doctor was my difficulty swallowing in the first week after the treatment. My doctor asked if my mouth was also dry. She prescribed Lidocaine Viscous. Which, in turn, confused the pharmacist. This is not a medicine that is concocted/packed in Norway. They import it, and the instructions are in English (all other medicines have instructions in Norwegian). Specifically, she was unsure how much I should take each time (5, 10 or 15 ml). She also disagreed with how long the box and the system said that I had to wait before eating. There was contradictory information in the medicine box, in their system, and what she thought was reasonable. I have to read up.

The week after

 

I found this meme buried somewhere on my phone while I was trying to delete old files that were taking up too much space. I remembered that when I decided to keep it, I had found it funny in a self-deprecating way.

By no means do I feel that I am crumbling. I accept that the human body isn't, hasn't been, and will never be perfect. Maybe it was once able to do things with more flexibility. Maybe it once had more elasticity. But each age brings its own discoveries. And it should always remain one's temple; one's pride and joy.

I still find the meme funny today. But in a different way. My temple is under "assault" with the objective of putting it back to its healthy former glory. Or some kind of glory.

I find it both funny and awkward how I now pay obsessive attention to the cracks and fissures that I once let pass because they added charm and history to the temple. 

So, how is my temple holding out after each chemo round? Everyone seems to be curious about how I fare the day after. But effectively, the body doesn't react to the treatment immediately. Symptoms come in waves, mostly over the course of a week. Which makes it more tolerable. 

This is how the waves come:

Up until day 3 after the round, I am still protected by Dexamethasone, which fights inflammation. Only after that does the body start fighting for itself, with reinforcement of Ziextenzo. Until then, I am able to function relatively normally. Although this time, because of the added antihistamines, on the day of the treatment, I was a bit more groggy.

Already on day 2 (after treatment) I have tingling on my hands. On days 3-4, this moves to the feet and the joints. This is the time when I may feel more muscle pain and be somewhat feverish. After the first round, I took paracetamol to reduce the pain, but not this time. Either the pain wasn't as severe, or the boy learned to tolerate it.

Last time, I wasn't sure if I should relieve the pain with paracetamol, and I called the hotline to check. The reason that I wasn't sure whether I could take it was because I was supposed to monitor for fever (as a possible sign of infection), and I feared that the paracetamol could mask it.

The tongue also goes numb, and the sense of taste changes. It is harder to even swallow in the first days. Appetite is affected, as nothing tastes the same. It gets better, but a metallic aftertaste remains. This is why nutrition is a relatively big part of the information package. I have already had an intro seminar on it and have another one scheduled, offered by the Vardesenter. I imagine that even for the healthy temple, this is useful information.

After the first round, it was on day four that I woke up the weakest. It was the first time I called the hotline to understand if the pain I had was normal. Aside from the tingling in the feet and joint pain, I had a throbbing back pain. This time, I had the same symptoms as before but found them milder. I wonder, too, if I tolerate them better because I know the sequence in which they are coming and now know that they aren't dangerous. 

Day four is also the day when the mouth becomes most sensitive. The tongue goes numb, and the gums begin to bleed slightly. I imagine that only slightly because I use a soft brush.

I was warned by the UK doctor that mouth hygiene was vital. The pamphlets say that I should wash my teeth each time I eat. And I knew to use a soft brush, because I was warned that the skin becomes too sensitive. Not only in the mouth, which goes quite dry too, but any sore in the body will now take longer to heal. To avoid sores, greasy lip balms are constant companions. I also have hand creams and lotions spread throughout the house.

And I am not supposed to be exposed to the sun. Not that that is an issue just now.

After this comes the runny nose. I have also experienced some discomfort in my ears. At times, it felt like all the sounds around me were muffled, if only for a short while. All these are temporary and subside after a couple of days. For some reason, the symptoms don't pile up on each other. They rather wait their turn, in perfect and predictable order.

In these first days, I am expelling the poison out of my system. Through the urine. So, peeing can come with a burning sensation.  Water intake is essential. 

The rashes come on days 4-5. After the first round, I had a rash on the hand where the catheter had been set. It developed into a chemical burn due to the chemo's abrasiveness. I had additional rashes in the neck and under one breast, which I assume were reactions to increased sweating. The UK doctor's warning that my skin would become more sensitive was not an understatement.

The rash in the neck required 2 creams. One for the hand and one for the neck. I was also advised to get an antihistamine for the itchiness. All of these are over-the-counter.

And then comes the loose stool. Last time, I also had a day of nausea, which went away with just one pill. This time, I felt mildly nauseous a couple of times, but didn't feel the need to take anything. The sensation went away quite quickly.

And then one fine day, after all this, I wake up fresh and symptom-free, ready to conquer the world. This is how I imagine it must be like going through withdrawal. It is poison getting out of one's system. 

And then... at the end of a week of predictable symptoms, my nose bled. Not terribly.  Just enough to remind me that this temple is fragile. And in its current condition, it doesn't take much for it to crumble. 

This hadn't been one of the symptoms of the first round. 

Fragility is... something I was never taught and then was not afforded.

How does one learn to embrace and respect being/becoming fragile?

Second round (Part 2)

12.03.26

All went well. No hell broke loose.

Here are the things that were different. I was in a room with three dividers, with two other people having treatment. The room had windows to the outside, which despite the continued windy rainy weather brought some solace.

The treatment started with the Phesgo injection, this time on the other thigh. The nurse explained that they alternate each time. This time it didn't burn as long as the first time. The dose was also smaller. I also liked how skilled this nurse was with needles. 

Then the nurse set the catheter on the other arm, mid-arm instead of the hand, as was done the first time.

The medicine to prevent any reaction is called Dexchlorpheniramine (not what I said in my last post).

This (according to Google's AI) is a potent first-generation antihistamine with anticholinergic properties. It works by inhibiting H1 receptors, a class of G protein-coupled receptors found throughout the body that primarily mediate allergic reactions and inflammatory processes. Common side effects include sedation, dry mouth, and dizziness.

The doctor who saw me yesterday told me that this medicine would make me drowsy during and after treatment. The nurse also warned me that I would be tired. She then asked me if I were concerned that I may have a reaction this time too. I assured her that I trusted that the medicine would do its job and that they (medical staff) knew what they were doing. She informed me that she would start the treatment slowly, as she set the chemo bag.

And it did make me drowsy almost immediately. I dozed off a couple of times during the treatment. They (a second nurse took over while the first one went on lunch break, and a doctor came by from time to time) measured my blood pressure regularly. I peeked, and it was around 134/95. In my case (I am on blood pressure medicine), not bad.

After the treatment, I picked up the immunity-boosting injection at the pharmacy. I'm going back to take it tomorrow at 14:30.

I was then picked up and dropped off at home by a member of the network of love. The network is very present and insists on being present in concrete ways, not just in words.

The Vardesenteret, one of the resources available to cancer patients, has a phrase in its pamphlet: "Ingen skal møte kreft alene" (No one should face cancer alone).

I shall not. Apparently, I am not allowed. My network won't let me. And for this I am immensely grateful. I feel loved, and it helps me face and process this moment in deep and meaningful ways. It also gives me serenity. 

Second round (Part 1)

11.03.26

Today I had my consultation before the second round of treatment. It was scheduled for 9:30, but I had to collect blood 2 hours before. This meant waking up earlier than usual.

I could hear the wind roaring outside, and an immense dread of venturing out and facing the weather. But I dragged myself out of bed and got ready anyway. 

Mafalda por la mañana (Mafalda in the morning) by Quino

Source: https://es.pinterest.com/pin/752804893958549361/

So early in the morning, with more people on public transport, I decided to use a face mask. The only one wearing one. A leftover of the times of COVID-19. Ironically (or not), those times are the reference for how I should protect my immunity, from washing hands and surfaces more thoroughly and often, to protecting myself with a face mask.

In the waiting room, I saw a woman I thought I recognised. She looked like the woman who came after me the day I had my first round. She looked Middle Eastern, which is why I remembered her. That first time, I noticed how short her hair was, but it looked strong and beautiful. It could have been a wig. But if it was, it looked natural and suited her well. Today,  if it was her, she had on a beautiful scarf. Maybe I noticed it particularly because on this grey day, I had already been looking for colourful hats and headwear. 

There was one I fell in love with and was discussing with a cousin who loves hats even more than I do, and a "sister" who is my soul twin. She (my twin) is from Naples, the city of my heart. The hat is called 'Napoli Boater'. It comes in many colours, but the one I liked was the colour that many buildings in Naples are painted in. Unfortunately, I can only dream of it, because at almost 1000 £, I don't even know why it is sold online.

Napoli Burgundy Felt Boater

Source: https://www.lockhatters.com/products/napoli-burgundy-boater

The doctor who saw me today was one of the two who gave me the diagnosis. I recognised her and told her that it was nice to see a familiar face. She replied that the first time she hadn't given me good news (which turned out not to be so bad after all), but hopefully today it would be better. It was. The tumour shrank from about 80-85 mm to 50-55 mm. The blood results showed that immunity had decreased only slightly. 

She was happy and in a light and joking mood. When one of her joking expressions didn't get a full giggle out of me, she said, "We have a dark humour around here." I thought that was only fair, with all the negativity around. I find it to be the right attitude. 

Aside from the medicine I was prescribed the first time, they are giving me one of the medicines used to counter the reaction in the first round, just before starting this round. I think I heard she call it dicyclomine; I will confirm tomorrow. I was warned that I would feel tired and should not drive after the treatment.  They will start the drip more slowly and hope I don't have a reaction this time.

Fingers crossed...