Marina, Portugal

Cancer turned my life, our life, upside down...

As if everything we went through before wasn't enough, cancer suddenly enters our lives again, in 2020, even before the start of the pandemic. Paulo was already a cancer survivor, having had a Lymphoma at 18, a Soft Palate Tumor at 35 years old and defying all odds living with a Polycythemia Vera since 2013.

“I don’t want to have preventive surgery, I don’t want to have an ostomy bag”, “You should have preventive surgery”, “Marina, you have to convince him to have preventive surgery... if it was my husband, that’s what I would do” ...

Of course, Paulo did not have preventive surgery, a decision that was very considered with the Doctors and supported by me despite the fear.... As a healthcare professional, I knew, from the scientific evidence, that these were the guidelines to avoid a recurrence or relapse or, at least, delay a new diagnosis (Paulo had already had 3, with this one four, the greatest probability, realistically, was that he would have more...); as a person, I had no answer to his question and I understood it well... “Who can guarantee that, if I have the surgery, it will not appear again?” ... Yeah, nobody...

It took about a year of exams, safety margins, more exams, more safety margins, attention to a small point that decreased with anti-inflammatory drugs... The truth is that, during this period, Paulo continued to heal and this cancer was under control.

Along with his recovery, something new happens, without me having the slightest idea...

I received a letter to undergo a breast cancer screening, I just had to get in touch and schedule it, easy. As a “good patient” that I am (and I am, because I trust, despite often questioning the path, in the health professionals who follow me), of course I scheduled and went for the mammogram. I did it, listened to the Technician about the results and I didn't think about it again. After all, I didn't have any symptoms, I was completely immersed in work and we remained focused on Paulo's recovery. 

Paulo was still doing well (within the situation), without any sign of recurrence.... It was time for us to have peace, at least we deserved it...

Suddenly, in February 2021, in the middle of the pandemic, after a call Paulo received, he asked me about an exam that I had scheduled at the hospital. 

I was immensely surprised, I even thought it was a mistake, I wasn't expecting it at all. "Me? It must be a mistake, I don’t have anything scheduled or to be scheduled!”, “But have you been doing any tests?”, “No! It must have been a mistake, you only call a family member when you can't reach the patient! Nobody tried to call me!”, “Surely? They said you have to be at the hospital on Tuesday, at 11:00, I think it's an ultrasound, but I don't quite understood...”, “I don't have anything requested or scheduled! It must have been a mistake! I'll see it on Monday. I’m going to the supermarket in a moment, I’ll be back soon.”

Minutes later, when closing the door to the house, I freeze. (When writing about this now, I remember that I never asked Paulo if he realised something was going on...). 

It could only be..., but I don't feel anything... it could be that the Doctors had some doubts... I couldn't help it at all right now (as if cancer were something that could or wouldn't suit someone...). I call the hospital to try to find out what was scheduled; however, no one tells me anything (and I spoke to a lot of people...), just that I have to speak to the person who called... 

I'm starting to think that something is really going on... I try to spend the weekend distracted... (yes, because I didn't talk about it again and when Paulo asked, I continued to say that I couldn't see it, I didn't know what it was, it couldn't be anything). 

Always with this in my head, hoping for the best hypothesis, they got the patient wrong... hmm... it's difficult... or for the second best hypothesis... doubts about the diagnosis and nothing is wrong... or the third best hypothesis... a mass, but benign... however, the most likely hypothesis continued to come to mind, day and night.

On Monday morning, I realised that I had an intervention radiology appointment scheduled... that's it... no, it could be that they had doubts... On Tuesday, I went at the scheduled time to have the mammogram and the breast ultrasound. 

Dr. Marina (note: I am a Clinical and Health Psychologist working at that hospital), we are with you, you are not alone! (Ok...). “Marina...Carvalho”, I raise my hand. "Hey how's it going?" I shrug, like someone who doesn't know the answer. “Marina… Carvalho? “I raise my hand again. “Do you need anything? I'm calling a patient.” “Yes, I know, I’m the patient…”, Is that you?! Do you know what you're doing here?!”, “Now, I think so...“...

In short, results of the appointment and exams, very carefully comunicated by the Doctor... We found something, let's see if it's liquid or solid... (silence, with me looking at the ultrasound screen, after having already seen the mammogram image and the Technician facial expressions... not good...) ... It's solid (new silence...) ... Let's see if it has benign characteristics... (silence)... It doesn't seem like it. We will take a biopsy now and then you will be sent to the “magnificent three” (Senology) consultation.

It was an instant... I left there completely anaesthetized... physically and emotionally... In such a way that I told the Technician that I would give her back the piece of ice that I was placing on the biopsied area without realising that they were ice cubes that were going to fall apart...

I didn't tell Paulo anything... well, actually, I said that the exam went well, it was just an ultrasound, that I still didn't have results, that I would see it soon... Paulo was going to Lisbon, to do his exams to see if everything was still ok with him... I didn't have much to say either...

Three weeks later, when I saw that an Immunohistochemistry study was being carried out (my doubts end here...), I asked one of the “magnificent three” doctors if she could, when she had a little time, talk to me about a health problem of mine. “Come and see me now, I’m in office.” I knew later that, of course..., she already knew and she was the one who as going to communicate me the bad news ...

And I was... 

Receiving the diagnosis was the strangest situation ever. It was as if two of me were there (no, I wasn't dissociating), the professional (who also works in the area of ​​communicating bad news) and the person who was being given a diagnosis. By the book, the diagnosis was given and received calmly (Thank you!) and what was necessary was immediately planned to move forward with the surgery as soon as possible. I had the least bad chance...

I told it to Paulo as if it was the simplest thing in the world (and, compared to what he had been through and was going through, and what I ended up going through, it was even... within the situation...). It's just surgery, a simple one, not a mastectomy. Afterwards, I should only have to undergo radiotherapy and hormone therapy. It will be in no time. I still see his face, like someone who thinks...  you seriously think that it will be that simple...?!

I also remember that, on March 19th of that year (Father's Day, when he was in Lisbon again), I had done all the tests (except one) and was ready for surgery. All that was needed was a CT scan to make sure everything was fine. But I've already had the ultrasound, is it really necessary? Yes, it's better, to be sure. Ok, everything is fine. Let's do it.

And I did it. And it wasn't good.... In short, an MRI followed and the results... We're going to have to do a liver biopsy... there's something there... we have to be sure... you are already going to start hormonal therapy, because you'll have to do it forever and so, we move forward. Let's schedule the biopsy.

Biopsy done, waiting for results and receiving more bad news, again by the book, with lots of tears, from both parts, at the end... The lesion is not just in the breast, there is a metastasis in the liver, it's just one, but it's a metastasis....

Metastatic Breast Cancer... WTF... Wasn't the autoimmune disease and everything before that enough...? And now?

I never asked myself why me... My mother and my father-in-law had metastatic pancreatic cancer and died within six months, more or less, my mother-in-law and my sister's mother-in-law had breast cancer and are cured, my patients have cancer, other persons have cancer... Why not me?

“We're together, we're going to schedule an oncology consultation so you can get an idea of ​​the treatment plan and you can ask for a second opinion, no problem”. At that time, Paulo continued insisting into making an appointment at a Specialised Centre, where he also had been treated before and was being treated, because the situation had become more complex... And I continued saying that it wasn't necessary because I trusted the doctors at the hospital where I worked... and I did but he was also right about the second opinion.

I had to tell him the bad news, and I had to do it by phone because he was, once again, in Lisbon for his exams. Yes, of course I minimised it... It's just one, it's good... The good news is that everything was still fine with him and I had the oncology appointment scheduled for the next day. Simultaneously, without telling me, you showed my exams to the Centre and an oncology appointment was scheduled for me as well.

The next day, after the oncology appointment, with me having already a plan (without surgery... with systemic intervention, for metastatic breast cancer disease) and a perspective of life after the diagnosis, Paulo calls me and tells me to go to Lisbon with all the exams and biopsy pieces, because I also have an appointment for a second opinion the next day...

Still working, I went through everything to get all the information and off I go to Lisbon, still not really wanting another opinion, but we had agreed that, if there was anything else besides the breast cancer, I would get a second or even a third opinion wherever he wanted.

After PETs and confirming almost everything that had been diagnosed before (the only difference was in the growth rate of the tumor, which would be higher), I received the therapeutic proposal, the same as what I already had (which was very reassuring) and the possibility of being monitored simultaneously at that Centre and at the hospital.

Of course I accepted, because there was also availability on both sides (thank you!). Of course I asked if it would be possible to continue working... Both doctors looked at me... and afterwards advised me to stop for “a few months” and come back to work later, already managing the treatment well, because this could, eventually, be possible...

I started treatment while still working. Looking back today, I have no idea how I managed to complete the entire process of diagnosis and beginning treatment working the way I did, but I also know that it helped me orient and align myself and not to be that focused in the disease.

At the end of June, no longer able to bear the side effects and toxicity of the first cycle of treatment, I decided to stop working. "Finally..." Paulo said...

After that, a series of complications (one day I will write a book about this), with a change of treatment to the treatment I'm still doing nowadays, a lot of difficulties in managing side effects, PET scans with no response to metastatic disease and consideration of changing treatment, in February 2022, my liver metastasis finally responds to treatment.

What a relief!

Which lasted at best a month... In March 2022, Paulo had gone to Lisbon again for more control exams, and called me around midnight saying that he had just sent me the results of your MRI by mail... When I heard his silences in the middle of the conversation I realised that something was wrong.... I opened the email and I couldn't believe it... The lesion that was considered inflammatory had changed...?

Wow... Now that I had finally improved, here we go again...

We stayed in silence for a long time, in a virtual hug on the phone and I tried (despite being angry that they gave him access to the test results before the consultation... it shouldn't happen...) to support him and to focus on the appointment and on the plan that the Doctor would propose.

I went with him at the appointment and, despite being there as a family member, I can't get rid of the skin of more than 25 years as a healthcare professional... 

So, you have seen the results of the exam right? Don't worry, we'll take it from the beginning, it'll be simple, a few intensive radiotherapy sessions and we'll deal with the matter.... 

Paulo obviously gained hope, especially because radiotherapy was not new to him. The Doctor said he would call the next day, after the multidisciplinary meeting in which they would see the results of the CT scans, to confirm the information and to schedule the radiotherapy appointment... (this was, for me, strange, but I'm was not saying anything, as I don't want to create disappointments for no reason...).

And he called. He called the next day to say... After all... The CT scans showed one or two lesions in both lungs... So, the plan would have to change, in addition to radiotherapy Paulo would have to undergo chemotherapy, but this would have to be carefully considered because of his heart problems...

Total disappointment for Paulo... A treatment plan without all the results?! For me too... How was this possible? And now... he was not able to do Qt because of his heart condition so unless his heart condition was stabilised he could not initiate Qt... 

That night, in the middle of the night, Paulo wake me up saying he couldn't sleep... I try to put it on a context and say  it's totally normal,  we're going to trust and try to rest because we have a plan and we're going to focus on that plan.... He tells me that he had just seen the results of the CT scans on the application... “I wake up” finally... And I see the results... WTF? Why didn't the Doctor said all this?! 

After all, the lesions weren't just one or two, there were many... and they were well identified as metastatic lung cancer...

We began a lot of biopsies (the first negative, not amazingly...), broncho fibroscopies that no Pneumologist wanted to do due to the associated cardiac risk, surgical biopsies... results with genetic mutations... (more mutations... that's why you love Marvel heroes...)

After a few months, with Paulo already resisting and wanting to give up, we began treatments... capecitabine... no response... With Paulo increasingly finding it extremely difficult to be exposed to the suffering of others in the waiting rooms... and well, after all, he had already been through so much...

I was still undergoing treatment, already back at work (although I had decided to reduce in half the amount of work, it was still a lot). He has undergoing treatment, already struggling with the side effects and all the other health problems... Despite that, he kept functioning and he kept hope...

Suddenly, at the beginning of 2023, my doctors raised the possibility of surgery and radiotherapy... Wow...! Even though the disease was systemic, based on my response to treatment, it was worth considering. I accept, of course! Anything that gives me more life and quality of life is welcome. And what's more, they are the ones who have the knowledge.

However, once again, I was not able to find much joy in all my progresses... Almost every progress of mine was aligned with some of Paulo's bad news... 

At the same time, I get him to accept the possibility of being followed by a community palliative care team (a forbidden word for him...) ... With a lot of resistance, he accepted and realised that the team could help the living, not just the ones who were dying... Thank you!

And time goes by...

On the day of my surgery, in June 2023, we both went to the hospital... each to our own, contrary to expectations... Me to the surgery room, Paulo to the hospital emergency due to breathing difficulties. I enter my surgery with the information that Paulo had a lung stroke and still no discharge plan.... I enter my surgery not knowing if I will see him again... and it wasn't so much about my surgery, it was about what could be happen to him, despite the fact that we had amazing help. I remember thinking, when I leave here this is going to be hard...

And it was... even more than I expected... Not because of my recovery from the surgery, which was actually "too easy" if I can say so, but because Paulo, despite being discharged, was hospitalised again two weeks later...

More than a month in hospital... with strokes and the removal of immense fluid from the lungs.... Grumpy as ever because he didn't like (no one really likes) being hospitalised... Once again exposed to other people's suffering, with greater difficulty for him. But immensely well assessed, turned from head to toe by an extraordinary team! Thank you very much!

Back home, a heart valve needs to be replaced, without this Paulo can not continue Qt... It was already a year ago when they did one catheterisation to control cardiac risk... In a surreal appointment, we had to convince a cardiac specialist "that the NHS should spend money and resources on Paulo given that he was going to die soon, in less than a year"... 

This is not said... nor is it thought... Paulo cell phone rings and my intuition tells me that I should answer it... I leave the room and, astonishment, it was his Oncologist, who wanted to know how the appointment had gone, once that he only could start Qt after the cardiac situation was controlled... 

There are coincidences that can't be explained... I ask her to speak to the colleague, she agrees, I enter the room and tell the cardiologist that the colleague is there to speak to him... everything changes suddenly...

Days later Paulo undergoes a new catheterisation, with a valve replacement and a good recovery. At the same time, I undergo radiotherapy.... I remember that, strangely for me, I even felt physically well, despite the surgery and radiotherapy... of course the doctors put me on my feet... I had interrupted one of the treatments so the accumulated side effects had disappeared, but they would return as soon as I restarted the treatment.

What happened... after returning to work... the worst decision of my life... I hadn't imagined that I would have to go back to living with pain... and fatigue...?! ...

Paulo returns, a few weeks later, to a new Qt treatment, deciding to stay longer in Lisbon, and starting moving between Lisbon and Portimão, due to compassion fatigue and in order to stay at his parents' house, which reminds him of his infancy and adolescence.

Of course I understood; however, I had already returned to work and, in Lisbon, he would not have the same support (although he really wanted it to be different, and it would not depend of me)... Of course I agreed... although we had to do what's best for us, each of us had to do what's best for each one... so difficult decisions... And what, at that time, Paulo thought was best for him, let me to walk every other week between Lisbon and Portimão which, in addition to the financial effort, represented an additional effort in my situation which, being under control, could worsen at any moment...
 
We were both aware of this.... We spoke a lot about it... I decided to see how it goes. I decided to also see how my body reacts...

The new treatment seems to be going better... Until... In December 2023, Paulo had a serious respiratory infection... A new hospitalisation... He didn't want it... But it had to be... 

Almost on Christmas Eve, he was back home... At that time, he already really missed our Miu, the kitten Paulo convinced me, quite rightly, to adopt the previous month.

We both continued, each with our own treatment... Paulo spending more time in Lisbon, me between Portimão and Lisbon to support him and for my treatments, exams and appointments... having more and more difficulty at work...  more symptoms, arrhythmias and fibrillation under study... the fatigue then goes unmentioned, even regardless of the travels... 

Despite everyone telling me that it was better to stop, I continued... it's just a few more days, then I have vacation... now I work fewer hours... bah... nothing has changed...

And then, in February 2024, more bad news comes... Paulo's metastases, which didn't grow much more in the lungs, extended to the pleura and liver and we don't know where else... F***!

Continuing on treatment... without much response... more infections... new decisions, with which Paulo himself agreed, with difficulty... interrupting the treatment again to take new images and decide what to do...

More infections... new emergency hospitalisation in June.... Grumble again... Coincidentally, the possibility of home hospitalisation arises.

Paulo reacts well to home hospitalisation (another fantastic team!) but he can't get back to his previous level of functioning... Palliative care is suggested, the doctor even goes home... No way... palliative care... I'm not dying...

I can't take it anymore and I have to stop working... 

With great patience, Nurse Pedro (thank you very much!) helps me to show Paulo the advantages of continued monitoring by the community palliative care team. He ends up accepting... But we learned that the team is only available to accept following users with advanced illness in the end of life... one more assessment... And the team agrees to follow Paulo. He asks me what changed, I say that nothing has changed (and it hasn't ...)...

At the same time, if, on one hand, the possibility of starting a new treatment arises, recurring infections still do not help. The Doctor proposes Paulo to stop the treatments... He doesn't react well... for him, this would mean that there would no longer be any possibility of living... So, he ends up making an agreement with the Doctor... he wanted to undergo the first cycle of the new treatment, when the infections were treated and then see how it goes. It has to be a three-way decision, says the Doctor... Three-way?... No, I'll do whatever Paulo wants... It's his decision, I will support him in whatever he wants, the best I can.

Paulo never started this new treatment...

It was about three and a half months with his body slowly shutting down... increasingly drowsy, increasingly experiencing mobility difficulties, increasingly experiencing breathing difficulties... However, he managed to remain autonomous, despite mobility difficulties, until the last week of his life...

He was angry when the doctor on the palliative community team told him that he could no longer get out of bed.... He knew what it meant... 

Paulo made several agreements with me to help him get up... we created a circuit of wheelchairs and walkers around the bed and the room to have support in case he loose his balance... I was warned that I couldn't continue doing that... I knew it... But he was persistent, and tried once again... I told him that it would be the last time that I will do it, and that I would have to tell the team (it was the only way I knew I could make him follow what had been asked, given the risk of falling, for both of us... it wasn't funny for us both to end up on the floor again, as happened in August... )... His answer... “You and your ethics ..." :)

How amazing this team was, always being available... What confidence they gave me, me in particular, in my ability, even with difficulties, to help Paulo at the end of his life. I didn't want him to die at home because I was afraid I wouldn't be able to help him with what was needed and I didn't want him to suffer without having to. He has accepted the application for admission to a palliative care unit. But I know it was just because of me. In fact, he didn't want to go. And when the time came, he didn't go. Even though I was scared, with the help of the team, I tried to do my best, at home.

We knew that, from then on, it would be a matter of time. And I was all the time with Paulo, responding to his needs, in particular the emotional ones... Responding, as far as possible, to my needs, because I was sick too, trying to take care of him...  (no one talks that much about this reality, and surely I am not the only one...)

We had to talk about death and dying... and how difficult it was for him to talk about it, given my apparent ease... we agreed that we would talk whenever he wanted and I would write it... 

One day he asked me what I wanted to happen when I died. I responded immediately, because I've thought about it so much that I'm sure of what I want: I want to be cremated and would like my ashes to be mixed with the seeds of a tree and planted. To stay nearby my family, in another way. His answer surprised me. "If you do this, I want my ashes to be with yours."

In the last few days, his daughter finally came close to him... Paulo was already at the end of life and he really wanted her to be more present, even before... But he managed to make the most of this time with her and that's what was important at that time.

Friends were very important... as Paulo said, whoever has a friend like Fernando has everything... and it's true... My family too... I think my sister still has difficulty in accepting that she couldn't be present at that moment in his/our life, despite everything she helped before... I told her that she was where she was most needed at that time... and it's true. 

It was with her and Luís (my brother-in-law) that Paulo had is last coherent conversation... in such a way that she didn't believe what I was telling her... it was only a moment... like that moment when Paulo realised that despite having difficulty speaking Portuguese, he was able to express himself well in English...

In the middle of all this, our kitten Miu, his main protector, got along so well with everyone who came in and out of the house all the time... she inspected everyone who came closer to him... Miu continued to sleep on his lap and next to him... and wanted to continue playing with his big feet when that was no longer possible due to the risk of infection...

And the day arrived.... We knew it was coming... by the way Paulo grabbed my arm and looked at me... by the way Paulo wanted to join his daughter's arm and mine with his hands... by the way Paulo rested after I told him that he didn't need to worry about me and that I would help his daughter as much as possible.

Paulo died at home, his home, his parents' home, where he grew, looking at the river, as he wanted.

His breathing slowed down and, in the middle of the night, he was gone. Peaceful, sleeping. Even though I kept looking for a long time at his chest to check his breathing, I believe he left when his daughter asked if she could come closer to me and I said yes. He knew I would take care of her if she needed it. I didn't even need to promise him.

Since then...

A lot has already happened.... Here I am, continuing to manage symptoms and new problems.... I'm "fine, despite missing you". I haven't returned to work yet, I'm focused on deciding what might be most important to me at this moment in my life, with my/our Miu.

By "coincidence", I have a new PET scan tomorrow. Hope I can renew my Stage IV "expiration date" for another six months.

Marina, living with metastatic breast cancer
Paulo, Super Man, died from metastatic colorectal cancer; Survivor of a linfoma, a soft palate tumor and a polycythemia.