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...

Woman, rise and claim your place!

 Today is International Women's Day (08.03.26). It's not a day celebrated equally everywhere. I don't usually like to celebrate the date openly, because I think every day should be women's day. As long as we have one day to celebrate ourselves, it is a reminder that we still have a long way to go. I am, of course, aware that the places that don't celebrate it now are not necessarily paragons of gender equity. But I do respect and honour the long history of the battles fought by the women who came before us. 

Today, I share the messages that touched me most, shared with me by other women.

One of the first was a picture a friend took of a spa window on a window we both mate to Berlin last year. She dedicated it to me when she sent it today. It says: 

"I had a second birth,

when my soul and my body

loved one another and married."

The second was sent by another friend. We are each other's valentines. We met in 1993, when we enrolled in Anthropology, and we have been friends ever since. This friendship has survived since the pre-social media era, despite the three of us living in different countries after graduating. This second was a picture of women striking for equality and against war. Sadly still necessary.

The third was a song my mother sent: "Secretos de Mujer" (a woman's secrets) by Layah Noir. Her voice is deep and piercing; the lyrics resonate.

"Duermo ligera, (I sleep lightly,)

Por si alguien llama, (In case someone calls for me,)

Por si un hijo (In case a child)

Se pone a llorar (Begins to cry)

Por si mañana (In case tomorrow)

Falta dinero (There is no money)

Por si algo (In case something)

Vuelve a salir mal (Goes wrong again)

Trabajo dentro (I work in)

Y fuera de casa, (And outside the home,)

Sin horario (Without a time)

Para terminar (To finish)

Si algo falla, (If something fails)

Mi nombre aparece, (My name appears,)

Si todo sale bien, (If all goes well,)

Da igual (It doesn't matter)

Secretos de mujer, (A woman's secrets,)

Lo que hago (What I do)

No siempre se ve (cannot always be seen)

Si me equivoco (If I am wrong)

Soy señalada, (I am pointed at,)

Si resisto, (If I resist,)

'Asì deve ser' ('This is how it should be')

Secretos de mujer, (A woman's secrets,)

Aprendí (I have learned)

A no incomodar (To not inconvenience)

A bajar (To lower)

Un poco la voz (A little my voice)

Para poder avanzar (To be able to advance)

Me enseñaron (I was taught)

A estar pendiente, (To be on the lookout,)

A sostener (To hold)

Sin reclamar (Without complaining)

A ser conprensiva (To be understanding)

Y paciente, (And patient,)

Aunque nadie (Even when no one)

Pregunte qué tal (Asks me how am I doing)

He sentido (I have felt)

Miedo en la calle, (Fear on the streets,)

He fingido (I have pretended)

Una llamada más (To get just another call)

He calculado (I have calculated)

Cada gesto (Each gesture)

Para no provocar (To not provoke)

Secretos de mujer, (A woman's secrets,)

Cansancio que (Fatique that)

No hace ruido (Doesn't make noise)

Llevar la culpa (To take the blame)

Por defecto (By default)

Aunque no tenga (Even if it makes no)

Sentido (Sense)

Secretos de mujer, (A woman's secrets,)

Doble turno (Double shift)

Emocional (Emotional)

Ser refugio (To be a refuge)

Permanente (Permanently)

Sin un lugar (Without a place)

Al que llegar (To arrive)

No quiero ser fuerte (I don't want to be strong)

Todo el tiempo, (All the time,)

Quiero poderme (I want to be able)

Equivocar (To be wrong)

No ser ejemplo (To not be a role model)

De nada, (For anything,)

Solo vivir (To just live)

Sin justificar (Without justification)

No quiero aplausos (I don't want applause)

Por cumplir (To manage)

Lo que otros (What others)

Dan por normal (Find normal)

Quiero el mismo (I want the same)

Espacio simple (Simple space)

Que siempre acogieron (That welcomed)

Los demás (Everyone else)

Secretos de mujer, (A woman's secrets,)

Historias (Stories)

Que no se cuentan (That aren't told)

La presión (The presure)

De ser perfecta (To be perfect)

Aunque la regla (Even if the norm)

Esté impuesta (Is imposed)

Secretos de mujer, A woman's secrets,)

No es drama, (Isn't drama,)

Es realidad (It's reality)

Es aprender (It's to learn)

Desde muy joven (From a young age)

A sobrevivir (To survive)

Y callar (And shut up)

Secretos de mujer, (A woman's secrets,)

Lo que sostengo (What I hold)

También es poder (Is also power)

No es silencio (It's not silence)

Ni costumbre (Or custom)

Es aprender (It's learning)

A no ceder. (To not give in.)

Secretos de mujer (A woman's secrets)"

As I was transcribing the lyrics, I realised that Layah Noir is what Google's AI calls "a virtual AI artist and singer". It is no wonder that it resonates. That is what AI is built for. To learn from and cater to the widest tastes.

Today, I will choose to look away; from the invisible work that supports AI, the ecological disaster that is its energy consumption, the specific threat that AI "artists" pose to human artists and creativity. Perhaps it isn't the best day. I will do my penance another day. Every other day...

Silver linings

This was supposed to be my third post (still in my slow catch-up), right after the one about the side effects.

Very early, when I started sharing my diagnosis with a few of my closest people, I noticed a sharp difference between my calm demeanour (which is actually uncharacteristic of me, since I can be very emotional) and the concern and shock of most I told about the cancer. 

Of course, I had been through the tests and consultations for weeks, which had probably helped me get used to the possibility of having cancer. But I also think that years of studying and teaching women's health have given me a particular idea about breast cancer. I knew the statistics were in my favour. For all the abysmal lack of knowledge about women's health, breast cancer is one of the few areas where there is actually a wealth of knowledge. Even if my conspiratorial side does think that it is because it's profitable for the pharmaceutical industry in this treatment paradigm. 

This is not a complaint. It's an observation. This paradigm will treat me and cure me.

Additionally, I live in a country where the health system is universally available, for free. I had to pay a nominal fee in the first few consultations and tests. These are called deductibles (egenandel). If I couldn't afford it, I could be exempt. After a certain sum (a little over 3000 kr), the state covers everything. 

The cancer-related medicines were free from the start. Even before I had reached the limit of the egenandel. Now that I have reached it (there were a lot of consultations and tests), every future appointment will be free, even if unrelated to the cancer. For the rest of the year.

The free health care is also generous. For example, Phesgo, which attacks this specific cancer, is an expensive medicine. For this reason, not all universal health care systems offer it, even when free. The Norwegian is one of the few that does. Elsewhere, I would have to pay dearly to include it.

This is why I keep saying: if one is going to have cancer, there is no better place to have it than here.

But even in countries with fewer resources, systems manage to treat, and people survive breast cancer. The health outcome for this cancer is largely dependent on social and economic factors. As is the type of treatment one gets. Biology usually comes in if the cancer is not detected in time or if it has spread. Then treatment has less impact on the cure; life-extending and palliative care are the logical approaches. But early detection is usually also determined by social and economic factors. Including which health system the woman has access to.

Then comes the fact that while I am fighting this disease, and if unable to work, the state WILL continue to support me. So, I don't have any financial concerns. This was one of my mother's concerns. She wanted to know if I had enough savings to support myself while in treatment. My answer: "I am so happy that I do not live in the US. At least I will not go bankrupt because of an illness."

But even if I lived in Mozambique, my health insurance would likely only cover part of the treatment. I would likely have to cover the rest. The paycheck would be covered by Social Security there, too. A privilege only for those with a job, unfortunately. 

But most of all, being a cancer patient gives a special status in the Norwegian health system. I (along with otherfellow cancer patients) have priority treatment. This means that I/we jump ahead of any queue. I can request treatment for anything, even unrelated to cancer, without going through my GP or the Emergency Services (legevakt), which are the two access points.

The UK doctor who saw me for the prep appointment told me that his advice to his (female) patients was for them to channel their inner Beyoncé.

Beyonce (Creative Commons licence: CC0 Public Domain)

Source: https://www.publicdomainpictures.net/en/view-image.php?image=580431&picture=beyonce

I take it to mean to bring my inner diva. He stressed: "You can reach us at any time. Sometimes the nurses may be busy and sound dismissive. Don't just take it. Ask for things to be done the way you want."

This is the biggest silver lining of all. But I have to learn how to be a diva, without overdoing it. 😀 

So far, most nurses haven't been too dismissive. They have been patient, heard me out, called me back (except one single time - details to be shared on another post), and when they thought I felt anxious, they offered me a solution and told me why they didn't think I should go to the hospital, but would always ask if I agreed with them. If I didn't, they would have done whatever I requested...

Side effects

This was supposed to be my second post. Then things just precipitate, and other experiences became more urgent to pen down.

In the meeting where I first got the cancer diagnosis confirmation (on 30.01.26), the doctor gave me three information pamphlets.

The first one was information to patients at the Kreftklinikken (Cancer Clinic), specifically related to breast cancer. The pamphlet had a QR code that directed to a site with resources and on the theme of breast cancer. These are multiple options, such as courses, support groups, financial support, physical rehabilitation, etc. From the cancer association, multiple cancer support centres, the municipality and other organisations.

It feels good to have so many resources to choose from. But it also feels a bit overwhelming.

The second pamphlet was information about the chemo, in my case, Docetaxel (Taxotere).

This pamphlet provides information about this medicine. It can be taken in combination with other medications. It then covers the preparation of the treatment. 

This includes the period between cycles (in my case, every 3 weeks) and the medicine that I need to take before the treatment (Dexamethasone) to prevent allergic reactions.

It also explains that Docetaxel is administered via an intravenous drip and that the treatment takes an hour.

The rest of the pamphlet is the description of the side effects, which are:

Allergic reaction, effects on the bone marrow (reduction of production of blood cells) - they were particularly insistent to look out for symptoms like 38 degrees, chills or limpness - hair loss, joint and muscle pains, mouth ulcers, skin reactions and nail changes, peripheral neuropathy (numbness of the extremities), water retention, diarrhoea,  and nausea.

The doctor who saw me in the preparatory session prior to the first round of treatment, who is originally from the UK, while going over the symptoms, said that the Norwegian word for chemo (sellgift, i.e., poisoning of the cells) was the more correct term.

The third pamphlet was about Phesgo. It explains that this medicine includes the antibodies pertuzumab and trastuzumab, which bind to the HER2 protein on cancer cells, blocking their reproduction and preventing the tumour from growing. 

The preparation is an ECG of the heart (echo). The treatment is an injection in the thigh. It is given over 8 minutes the first time and 5 minutes in the subsequent times. It requires 30 minutes of observation for symptoms the first time and 15 minutes for subsequent times.

When given simultaneously, Phesgo is given before the chemo drip. The period between treatments is 3 weeks. The number of treatments will depend on the disease's progression.

The rest of the pamphlet then goes into the side effects. Most of them are the same as the chemo side effects. The ones that are different are effects on the heart (it will be regularly monitored), rash, abdominal pain, constipation, loss of appetite, weakness, and sleep problems. 

Also, pregnancy should be avoided for up to 7 months after the end of this treatment. I don't think this will be an issue.

The list of side effects was repeated at the preparatory session with the UK doctor and during the first treatment-round session.

I was prescribed medication to counter most of the side effects. The amount of medicine seemed exaggerated. After the treatment, when symptoms appeared one by one, I found out that it wasn't nearly enough. But that is for another post...

The picture includes the medicine I have to take for the cancer and the medicine (supplements) I was already taking. I feel like a mobile pharmacy, and the picture doesn't even include the medication that is not mandatory. To be taken only if I get specific side effects...

Don't overdo it

I talked to my mother on Friday (27.02.26). I wanted her to hear my voice and confirm that when I tell her (by text) that I'm doing well (under the circumstances), I mean it. She knows me well enough to sense in my voice if I were trying to deceive her. Which I haven't. 

I withheld the details of my 'reaction' to the treatment. But I told her that I had a reaction. I have also told her about the joint pain and tingling sensation in the first few days after the treatment.

There is a balance to be had between unfiltered honesty and the consequences of such candour.

Here I am free to convey the experience with all the detail and unbridled (even schadenfreudian) transparency. When talking/texting with my mother, I have to consider that she is far away, unable to see what is happening, relying only on bits of information and her imagination. And, as the unforgettable Kant said, the human imagination can run quite wild. I am paraphrasing, of course.

I also know her well. I see from what she chooses to text me and how she changed some of her routines, how she is coping. She is staying strong for me. And she is sending me inspirational texts to help me stay strong.

She comes from a long line of stoic women. She has told me a few times about a particular moment with my grandmother (her mother). She (my grandmother) had five children who lived to be adults. Three (all girls) did not. Two died before my mother was born, but one died when she was a tender child, but old enough to remember the moment. It was a day on which mourners had gathered in the house.

"Children were not allowed into the house with the mourners. But at one point, we (she and her sister) were taken to mãezinha (mummy). She was lying on the bed. I noticed a single teardrop drying on her gown".

This is verbatim how she always tells me what she recalls. Always the detail of the drying teardrop, presumably against a face that did not allow my grandmother to show any pain to her daughters, even after just having lost another.

This stoicism extends to my mother's understanding of if and how one should reach out for help. This stoicism is probably why, despite my many criticisms and snarky comments about the Norwegian Lutheran self-reliance, I am quite familiar with its inner workings. And, hence, why I can call it out so clearly. 

This stoicism is why, when I told her that on that day I had asked my sister in law, who works at the hospital, to pick up a couple of medicines that the doctors has advised against a growing rash, and my niece (her daughter) had dropped them off on her way to the gym, my mother's instant response was: 'don't overdo it!'

By that she meant that I should not overdo my overeliance on solidarity. Also, I should not make people feel that I am taking advantage of them.

I won't. I would never.

But at the same time, we need to know when to ask for help. Many people (not just women) refrain from doing it when they really ought to. Often, when they finally do, it's too late. Or a better outcome would have happened if they just reached out sooner.

I told her that I am an excellent logistician. I know how to redistribute the requests. And I know that people around me genuinely want to feel like they can do something. Ideally, see me cured, but while that doesn't happen, just something... It's a way of regaining some semblance of control, of not feeling powerless. 

I shouldn't have needed to tell her that. I shouldn't feel shame in reaching out to my network of love. She shouldn't feel like the resources within this network are that scarce. I think she underestimates the power of networks of solidarity. We are not made to suffer needlessly alone; if with help, we would do better.

People forget, humans are a gregarious species. We are supposed to go it at life together.

I would have been irresponsible if, while with a weakened immune system, fighting an allergic reaction, I had ventured onto public transport to autonomously get the medicine.

I am choosing to break the chains of stoicism (the developmentalists call it resilience, especially when referring to women). I will not cry or complain without reason. But I will call out on each member of the network, as needed. And if I ever overdo it, I am counting on them to be candid enough to tell me to cut the crap or drama. That is why they are in this network.

Golda Rosheuvel (Charlotte) behind the scenes of Queen Charlotte: A Bridgerton Story (from Shondaland; Creative Commons license)

Source: Two Actors. One Role. All Regal