Women know their bodies

One of the questions I get is whether the tumour was identified during a routine mammography. In fact, the two times I went for a biopsy were because I felt lumps in my breasts that were out of the ordinary. I have heard of other women who also have the same experience of feeling abnormal lumps and checking with their physician.

I think that breast cancer is something that hovers over every woman's life. It is the most common cancer for women in most countries, and for half of those who are diagnosed with it, there isn't a particular risk factor other than being a woman and over 40. I am now over 50. Already in perimenopause (no night sweats, but some debilitating sleepless nights).

Women don't trust that they know their bodies enough to see if something is wrong. But they do. They may rationalise it, minimise it, but they know when something is off. That is how I knew. Not that it was cancer, but that it was off enough to ask a doctor if I should be worried. I have seen and heard, since my thirties, that many other women do the same. This is how I know that women know their bodies.

It reminds me of two instances in which I heard women's relationships with their bodies described in memorable ways.

In a meeting among African feminists, one recalled how they had been shocked and transformed when radical feminist Patricia McFadden had asked a group of eager young feminists in training: when was the last time they had looked at their own p****.

She meant to point out how our bodies and relationship with them are often marred with shame and avoidance. She means to remind us to reconnect deeply with ourselves. To look at ourselves with radical self-love.

Which brings me to the second instance. In a conversation with a friend, she shared that, with age, she had begun to "see" herself better. To see parts of herself that she had not paid attention to before.

This same friend asked me recently: "Do you feel that you are inhabiting another body or do you recognise yourself in this medicated body?"

I like the questions she asks me. They make me look deep inside. My answer:

"The issue is that this cancer is also part of the hormonal woman which I am becoming. The menopausal woman. I have been thinking (still incipiently) about how we prepare for or accept the propensities, ailments, aches and pains, as well as the more serious illnesses. I am curious about other paradigms for dealing with this transition. So, I don't exactly recognise myself. Because I am leaving behind a body, an existence. And another will emerge. And it is happening with this disease, but the high blood pressure, the sleepless nights, the difficulty focusing... all is part of this transition"

This experience, and the way I am forced to look and listen to my body, has forced me into a deeper and more radical self-love. My attention to my body, in a simple but intimate moment of self-grooming, and my decision not minimise what it was telling me, only makes me appreciate our relationship more. I wish this same relationship and self-embrace for all women.

Not a good night

Last night (22.02.26) was not optimal. I had been feeling the tingling sensation on my hands since the treatment. But it was bearable. I have since noticed the tingling move along the body and particularly to the ancles.

After feeling well and energetic for a couple of days, last night my body temperature rose. Though, not above 38 degree, which would be concerning. 

I slept badly. The tingling became more intense. It felt like a stabbing sensation, particularly around the joints. Very similar to malaria.

This morning we called the nurses and asked for advice. They went through the symptoms and all were within what should be expected. They reminded me that I have taken really strong medicine. They were very attentive and wanted to make sure that I got the attention I felt I needed.

After the call, and with their blessing, I took some paracetamol, to reduce the pain. And will monitor how I feel throughout the day. I can call them any time, if my discomfort or pain continues. But for now, it does not seem that I have an infection.

It is surprising how things can turn around so quickly. 

When all hell broke loose

A friend told me:

"I read the first posts, and I must say that I didn't care for the cliffhanger!!! Luckily, I knew that there was a happy ending, otherwise I would have been very worried! Don't scare us, please! When it's fiction, use all the literary tricks, but in real life, we want to know that all ends well."

I understand! I really do. But a little mischief and suspense are good for my soul. I apologise in advance if this is going to be a rollercoaster. Because, in a way, it cannot be otherwise.

So, what happened when all hell broke loose? I was chatting away with the nurse, in a very good mood. Then I mentioned that I was feeling something of an aftertaste in my mouth. I was smiling because it reminded me of the sensation I had during the CT scan. The contrast liquid that I was given would give me an aftertaste in the mouth and make me feel warm in the stomach and groin. I would feel like I had peed myself when I hadn't. The sensation had made me giggle at the time. And because it was similar, I wasn't worried.

But the nurse's look, when I asked whether it was normal, was not one of amusement. She asked me if I was feeling anything else. As if on cue, my chest compressed and I started having difficulty breathing. Like I never had before. Like the chest couldn't move. I gasped. The nurse had already pulled the emergency button and warned me that there would be a LOT of people coming. I had my eyes closed and did not see immediately how many there were. I just heard their voices.

The nurse held my hand and asked me how I was feeling. A male doctor asked me about my symptoms and where it hurt. I had difficulty breathing, and my pelvis hurt, on and off. It was throbbing. But I didn't know exactly how to describe it. I had never felt that kind of pain. At every onset, I held my breath, and tears rolled off. I grabbed the armchair's arms hard. He asked if my back also hurt. I said no, just the pelvis. He ordered me to receive antihistamines and paracetamol. Probably other things too, but I am not sure what. They stopped the chemo, got my breathing under control, and the heart rate down.

When I opened my eyes, there were, sure enough, about 10 people in the room. They had rolled a bed into the room. A smiling, vivacious nurse (?) told me: "You are going to feel very tired now, you have a lot of things in your system to control the allergy".

A young doctor (?) asked me how I was feeling. I let out a faint: "Much better". Slowly, most of the people left the room. A female doctor presented herself and asked me again about the symptoms and how much pain I had feltin the pelvis, from 1 to 10. I said 7, on and off. The difficulty breathing, the oppressed chest and upper stomach, which all felt connected, and the warming of the lower side of my face. The face getting warm and the difficulty breathing were symptoms that the nurse had told me could happen.

They were prepared. Throughout the ordeal, they did not panic; they did not shout over one another. They were in control. I felt safe. The nurse's voice and her holding my hand were comforting. I felt the anti-allergic medicine weighing heavily on me. I accepted the offer to move from the chair to the bed. The nurse was told to restart the chemo after half an hour. I was awake on and off. I heard them coming in to monitor my blood pressure. The pumping machine woke me up at a certain point, when it started beeping and flashing a red light. I thought that in my stupor, I had pulled on the emergency cord they put under my hand, in case of need. The nurse came in to increase the drip rate, which had been slowed to not stress my body. She asked if I was hungry. It was past 1 pm, and I had been in treatment since 10 am, passed out for nearly two hours, from the heavy medication. I accepted a yoghurt and water. I felt myself getting back to normal. The smiling nurse (?) came into the room and said: "That was something. You gave us a scare".

It should have lasted an hour. It lasted four.

This is why they plan for the first session to be longer. To see how the body reacts. To adjust as necessary. Aside from the standard pre-meds, I'll be receiving antihistamines to prevent allergic reactions. But the chemo and the Phesgo will continue as planned.

My mood after this was not as chatty. It made me take stock of what I was potentially up against. I had been informed of what could happen, but knowing and experiencing are not always the same. My mother was the first to whom I shared this realisation. At 13:09, I wrote to her:

"I had a reaction to the treatment, but everyone (doctors, nurses) was prepared for that possibility and came promptly to the rescue. It was a way to be reminded that I should not minimise the seriousness of this disease".

She had written to me earlier:

"All our positive energies, relatives, [and] close friends who know. I have been reserved; I have not divulged. The strength of our ancestors, who never abandoned us. To my good God, in whom I deposit my faith and hope. Not least, to the scientific advancements, in which I believe. A kiss and a hug. We are all with you. Until the overcoming and always".

I didn't grow up particularly religious. I do not feel the compulsion now, either. But we all get our strength from multiple sources. This network of love will certainly be my source of strength...

The day after

This was supposed to come after posts talking about the expected side effects and silver linings of this whole situation. But since those are more informative/descriptive, rather than emotive, I can write them later.

The day after was yesterday, 20.02.26. That is, the day after the first round of treatment. As I hinted at the end of the first post, I had an allergic reaction to the chemo that required emergency assistance. I will write the details in its own post.

After the situation got under control, everything else went well. I rested, and when the treatment finished, I was asked if I had anyone pick me up. I would not have been allowed to drive home because I had antihistamines in my system. But I felt strong enough to take public transport home by myself.

Someone living in Sweden told me I was courageous and that next time I should take a taxi if the hospital doesn't offer other options. I still need to figure out all the small perks that being a cancer patient offers.

Today (21.02.26), after I received my immunity-boosting injection, I sat in the waiting room and waited to see if it had any adverse effects. The wall was filled with pamphlets on what is available to us.

But the day after was nothing out of the ordinary. As I wrote in another post, I had another MRI in the morning to check the thing in my hip. Then I went home and worked normally in the afternoon. With more energy than I've had in weeks.

I am having a tingling feeling in my hands. I called them about it. They have around-the-clock lines to address any concern. It's one of the symptoms they told me to expect. They assured me that it's fine. I have heavy medicine coursing through my veins. I just had to move my hands to improve circulation.

I am also feeling that the hands are drier. The nails are expected to chip. I was advised to buy a nail care kit, which I did. I have started to moisturise more, my hands.

These are the small things I can control...

What I cannot control is the rain after the snow, which leaves the streets icy and dangerous to walk on. But I can still appreciate the sun and the quiet of a Saturday at the hospital. 

How I got here

 I got here by taking the bus and then the bybanen (the city tram). After the number of times I have come to the hospital for tests and probes over the last couple of weeks, I feel like I know the route by heart.

It feels like it's been a long time, but it's barely been over a month. I felt a lump in my armpit. I was having my period (I still bleed, though it's getting more irregular). Lumps and swellings are normal during these. But this one felt strange. Bigger.

I checked with my partner to see if he also felt it was out of the ordinary. We both agreed that I should have it checked. I requested an appointment with my fastlege (appointed GP) on 14.01.26. They are the gateway to the rest of the system. Them and the emergency services. 

I got an appointment for the following week (21.01.26). She looked concerned. The lump was big, she agreed. And the right breast also seemed to have a large calcification, which usually comes and goes during my periods, but the left no longer had.

On 30.01.26, I went for a biopsy at Haraldsplass. I was always going to be followed at Haukeland (the main hospital). But they had a backlog and could not fit me in immediately, and there was no time to waste.

I had my first scare a few years ago. A strange lump appeared in my left breast. I took a biopsy then, too. The attitude of that radiologist was completely different from what it was this time. He was sure the biopsy wouldn't turn up anything. And it didn't. And after a few months, the lump vanished as quick as it had appeared.

This time it was very different. When I asked if the radiologist was concerned about anything, after a lengthy observation and collection of samples, she affirmed that she had no doubt that it was cancer. The biopsy would only confirm what kind. I was also invited to participate in a study to improve diagnostics.

The additional diagnostics followed at record speed. First, an MRI without contrast at Betanien on 05.02.26, followed by a PET/MRI at Haukeland on 06.02.26, and a CT at Haukeland on 10.02.26.

The meeting for the final diagnostics was on 16.02.26. There were two possibilities still. One of the MRis showed something on my hip that could indicate that the cancer had spread. In that case, the treatment would be only to prolong life. There was little chance for cure. I would need to take another biopsy of the bone in that area. That would take at least another week.

I was shocked, I teared up, and the doctor also showed sorrow to have to give me this news. I had kept a positive attitude, but this shattered a bit of my optimism. 

The other possibility, if the new biopsy didn't find that the two were related, was that the cancer was localised and the treatment would be curative.

The cancer is very aggressive, meaning that it reproduces quickly. It is called HER2+, with positive estrogen and progesterone receptors. But the knowledge about how to handle this type of cancer has improved a lot in the last few decades. So, the outcomes in this case are much improved. The treatment would be the same, but the expectation was that it would lead to a cure.

I head home with a heavy heart. bracing for the worst. I knew it was a possibility, but I didn't expect to be in those statistics. Then a call came from the clinic. Another radiologist (a very good one, they stressed) reviewed the images and said with strong confidence that the area did not appear metastatic. It was something else entirely; even the doctors have difficulty pronouncing it, so I am not bothering with learning the name. Something everyone can have and doesn't even need treatment. But I would need a new MRI to confirm. That happened today, 20.02.26.

This was the view as I waited to be called in for the MRI:

It is a view from the hospital building called Protonbygget (The Proton Building). It sits behind and away from the other buildings. In the view, one can see a kindergarten. The prams are all parked outside, probably with babies napping in them. A practice common in all Nordic countries, but frowned upon elsewhere. Beyond it, the city of Bergen.

It is best accessed from the underground tunnels from the Sentralblokken (The Central Block). The names of the buildings are very obvious; they name their function or characteristic, like the Glassblokkene (The Glass Blocks). The building where I will have most of my appointments is the Parkbygget or Parken (that one seems more confusing).

The underground tunnels are a maze, but well signposted and informative. Like this sign, which informed me how far it was to the Proton Building and that I could stop along the way and rest if needed. I didn't need it. I am determined to keep active as much as possible and only rest if the body absolutely requires it.

Tomorrow I have to come back for an injection that will boost my immune system, since the chemo is attacking it. I will have a round every three weeks. The next appointment is on 11.03.06 for a conversation with the doctor and 12.03.06 for the actual treatment. There will be a similar routine, prep-meds the day before, and on the day. Treatment, post meds on the day, the day after and the second day. Immune boost between 24 and 48 hours.

After every 3 rounds, I will undergo a new MRI. Depending on how the cancer is reacting, that will determine how long the treatment will last and when I might be operated on.

It seems scary and daunting, but there are several silver linings, and I chose to focus on them...

First Round

19.02.26

It was a good day. Sunny. Not cold, despite the negative degrees. It was beautiful out. I had to stop and take pictures of the rising sun.

I came an hour two early. They had changed the appointment time from 15:00 to what I thought was 9:00. When I registered my arrivel, it said it would be at 10:00.

The time went by relatively fast, while informing some outstanding people of what is going on.

When I finally eas called, and arrived to the treatment room, the sight of the chair and pillows made the situation more "real". Not that I didn't think it was real before.

I was in a good mood. The nurse was calm and thorough, explaining all details calmly and patiently. Asking regularly if I had questions. She started by setting up the drip. Before she started with the chemo, she applied an injection of Phesgo. This is the medicine that attacks the HER2 directly and specifically.

After no adverse reactions, which were unlikely anyway, the chemo started. The mood was good. The nurse and I chatted away gladly and happily. And then all hell broke loose...