you may already know the news about Patricia, who passed away Tuesday morning July 2nd officially at 8:27 (I'm Swiss.... therefore time matters, isn't it?) Already one month ago!
Hence the lack of posts and news since her last message posted June 20th. So no gorgeous photo of the ocean or South of France or the mountains with lots of fresh air (re-read her last post)!!! Just a lot of sorrow and pain to share with you
Well, yes.... after more than 5 years fights against the melanoma, and about 4 years as a stage IV patient, she lost the battle. She leapt over to the other side.
Tumors spread so fast, that she eventually died in less than a week. You knew that unfortunately one tumor never answered the TIL treatment in Amsterdam, the one in the psoas muscle for which she had started a radiotherapy (aka tomotherapy). The tumourous cells obviously developed a resistance throughout all the different treatments and at some point overrun her immune system.
On Monday June 24th she learned that she had several small tumors around the liver. I was away, on fieldwork, hardly reachable. In one of her last message to me, she could only say, in French, "merde, merde, merde".
She has been proposed to switch back to the targeted therapy to gain a few more weeks, maybe the whole summer, so we could go all together to Greece, an old, old vacations project....
But she knew dice had been rolled. Still she started again the targeted therapy to give her, and us, this last hope, this extra little more time together.
On Thursday evening she has been admitted to the hospital for severe dehydration due to the continuous nausea she'd experienced because of the tomotherapy. And because of a very strong pain in the abdominal region.
The put her immediately on IV and morphine from that moment on. Blood tests revealed on Friday that she had almost no platelets at all, and probably and infection too. Thus, a big risk of internal hemorrhage. They gave her twice platelets, but with no tangible results, for the vessels within and around the tumors were pumping up all the platelets in a process aka "diffuse coagulation", with the additional risk of pulmonary embolism if any of the clots had the bad idea to travel further up in the vascular system.
Bref, in other words, para hacerlo corto: a bad clinical picture....
And in the meantime, tiredness, confusion, weakness.... kids were with friends (thanks, thanks to all of them), her mother with her, her father going back and forth home-hospital, and my traveling quietly back to Brussels loaded with Greek thyme honey, Chios mastixa and other local foodie stuff to share with her once back in BXL.
Some of you know some of my obsessions, the more social being the food one (I won't share here the other ones, sorry guys, they will be for my psychic), and I was full of hope to recreate some common purslane salad with grilled hazelnuts, fresh goat cheese, arugula, tomatoes and dill, some lemon juice and olive oil (did it recently though)...as some teaser for our next Greek vacations, re-scheduled for August because of her tomotherapy (which was one of the last clash we had about cancer, couple, planning, and all this shit, but...I'll tell you more in another post).
So, yes.... I landed on Saturday, called twice her cell phone without any answer, read quite late a message about her platelets and overall health situation - oh, yes, up to that moment I wasn't worried a bit, for being rehydrated in an hospital is not supposed to be something worrisome - but unable to go out because there were no more keys and the two boys were supposed to come back home in the afternoon.
I stayed home, welcomed my older son, fixed dinner, hardly spoke with her father (could sense some tension, but not its reason) and went to bed with a sleeping pill.... Her mother stayed with her all the night.
I first saw her on Sunday, and she was terribly weak, tired and pretty much confused. She couldn't focus properly, and was falling asleep quite often. Her whole body and expression had changed so much since I had left for fieldwork, that I realized, yes, we were going for something serious. I talked to her oncologist over the phone, and heard the same thing he had already said to her mother: it was now a question of days, if not hours....
I eventually went back home in the late afternoon to pick up the two boys. Seeing my face, my older boy realized immediately that his mother was in a bad condition. Still he was reluctant to go, so I told him that this was his unique opportunity, probably, to make his farewell while she could still react and be there with them. And rushed back to the hospital.
Some hope came at the end of the day when an intern told us her platelets were high again and that she was treated for her infection with another antibiotic. I also learned she had an infarcted spleen. That I misunderstood for the bile. They were waiting for the acute phase to be over to consider an operation. So in other words she was stable, under control, or at least this is what I understood, or wanted to hear. Yes, this is what I wanted to hear....And this is what I communicated to everybody... Her oncologist told me after her death that the intern had over interpreted the data.... but this doesn't make any difference after all, and he did his job in reassuring us somewhat. And what about my own over interpretation....
So, we all came back home, her mother being completely exhausted. But a close friend physiotherapist who helped her already at the hardest parts of the Amsterdam TIL treatment stayed with her overnight. Brigitte you just cannot know how much you supported her and us in these hard times.
When I came back with the kids, on Monday, after informing my boss I would be away for a couple of days because of her terminal condition, she was already in a coma, her breathing, slow, erratic, deep .... Yep, it was really a matter of hours!! But so changed: her expression, her features. Not the person I knew. Not the body I had held in my arms, I shared my bed with. But still her.
How could it be so fast? She knew her days were counted, but she never gave away. But so fast!!?? What about the "stabilization"?
Our youngest son couldn't believe she was in coma. What is coma by the way?? How do you explain it to a 6 years old child? Sleeping, but not sleeping; she cannot move nor react, but she can feel and hear; she won't wake up back ?? All the above, plus the inexpressible.
He poked her, wanted to open her eyelids. He had drawn three pictures for her and wrapped them himself. We put the drawings on her bed. Then came the anger: against her who was leaving him; about the "world" that allowed such a thing. Yes it's difficult not to say: "why do you leave me?", when in fact she did not decide to leave at all. She was drawn away from us by this f.... cancer.
The older one, just cried, desperately. A deep, deep cry.... From the soul, from the guts.
Erwan, the Christian-sort of figure who shaved his head (sea one of the post), took the kids back home (well actually I drove them back home and back to the hospital). How do YOU come to be there, at that moment? As many others at other moments? Right there, at the right moment? Will (try to) answer it in another post (too).
And we settled for the night, her mother, her father and myself. Accompanying her to the next step of her life. Crying our grief out, talking to her, reassuring her and ourselves.... And this impressive breathing, slow, erratic, deep, as if she were in apnea, counting the seconds between each one, having the small alarm in our minds when she was over the "normal" second count. But every hour, slower and deeper.
Holding her hand, moisturizing her lips and tongue, refreshing her forehead. Sipping coffee (me) tea (them), leaving in turn everyone having his moment of intimacy with her. Long night, short night. The tears I hold for five years (almost) were coming out. And still are. There was no reason anymore to be THE strong, stable figure. But just the lover, husband and father of their kids, facing the fate of the cancer and the loss of the beloved one.
And then the sun rose. At 8am something I got a call from home (Erwan) asking for her state. Bad luck: the prepaid cell phone card run out... So I called back home, and woke up the kids. I talked to Hadrien, asking him if he wanted me to put the phone on his mother's ears "no, she won't hear".... So I asked if his brother wanted to talk to her. No answer, voices in the background. Repeating their names several times. Then I promised to call Hadrien back when she would have leapt over the other side. And I hung up. At that precise moment Pat's breathing rhythm changed completely. I checked on her and saw no more pulsation on her carotid, had the reflex to call on her parents "she's leaving". Two more breathings and then she started her journey, and our loneliness began.
Ohhh, shit, shit,shit. The same words she used with me about her liver mets....It wasn't unexpected, but still. Up to the end there is some small, small hope. Really. Some miracle. Even for the most obstinate scientific mind. Even for---- I dunno.
Why being so precise in the run of the facts? Why being so medical?
Because this blog is about melanoma; about the hopes, sufferings, joys, and pains of somebody who lived with it for 5 years, and fight against it with all the energy she could. Because this blog is about a melanoma patient who struggled against companies and regulators to tell them that melanoma is about research and costs BUT ALSO ABOUT PEOPLE. About people who directly suffer from it and usually die so fast that nobody is ever able to start any lobbying action to put people at the center of the melanoma treatment. But this blog will be also from now on about people who live/lived, with somebody with melanoma and have/had to face a very quick descent to hell if their child, parent or partner cannot access the last scientific advances in that field. About people who helped us through their donations for the TIL treatment, and helped us giving their time, support and soul.
And also because it matters to me to remember the last hours and minutes of Patricia, with whom I lived 16 years. I shared dreams, plans, hopes, and laughs with her; I shared pains, doubts, and tears with her. We fought and made up after. We got married, three times, but we also almost divorced. We trekked in the Alps and in the Andes, we dived with sharks in the Caribbean, and skied in the Alps. We fought over movies - Hollywood vs Tarkovski. I love heat, she hated sweating. We valued our respective friends. I'm a settler, she was a traveler, but she eventually settled down and I started to travel. And we got kids.... Now our paths are separate.
She leapt over. Now WE have to live. With an elephant on our chest, and tears in our eyes. But we have to live and reconstruct our lives What else?
PS All my apologies to the native English speakers for my pidging English ....