Because I freaked out…

“Dear friends,

Our friend R– has been undergoing chemotherapy for gastric cancer for the last two years. She is now in need of an aggressive operation. She has received the approval of a Washington, DC cancer centre for admission to have the operation as soon as possible.
She needs to raise a substantial amount of money to be able to afford the USD 250,000 needed for the operation.”

My friend and I composed this letter just after a conversation I’d had with the medical secretary in the office of a very famous American surgeon. She had confirmed that I was eligible for a major operation to remove my stomach and parts of other organs in the abdomen, followed by intra-peritoneal chemotherapy (HIPEC).

A life-saving operation that gave me new hope of healing after I had been told I only had a few months to live. I had spent two years on chemotherapy trying to accommodate the idea of being terminally ill, to no avail. Something kept (and keeps) dragging me to pursue an ambiguous attachment to life.

But this is a different story.

News of the operation was hopeful, but anxiety overshadowed this little light at the end of the tunnel: that was due to my conversation with Elsa, the aforementioned medical secretary of the famous American pioneer HIPEC surgeon.

Elsa made a good impression on my friend, who had first contacted her on my behalf. She had said that we would be told about the feasibility of the operation as soon as the doctor had studied the reports. That was in late November 2012.

A few days later, I found myself aboard an urgent flight to Lebanon to attend to my mother, who was ill and in hospital herself. Everything had to be suspended, including communication with the Washington clinic.

When I returned to London in late January 2013, I had my first conversation with Elsa one week after sending my medical records for consultation. First disappointment: no, the doctor had not yet looked at my records. “You contacted us in November and then you disappeared,” Elsa admonished me in a moralising tone of voice, “so you must be patient.”

Moreover, the cost of the operation had been on my mind, and I had to ask about it because I had no medical insurance.
“Between 200–250,000 dollars,” said Elsa, sounding almost triumphant. She then answered my “OH!” with “So do you have the money?”

“I certainly don’t have 250,000 dollars right now,” I said. “However, I believe money won’t be a problem.” But that was not a good enough answer.

“I suggest that you start working on it. Call me tomorrow at the same time,” Elsa said, and ended the conversation.

For the next four nights, I had a regular rendezvous by phone with Elsa at 9 pm; but the disappointment only grew with each conversation, and Elsa’s imperious tone had an increasingly humiliating effect.
“As long as you are working on the money at your end, I will continue working to push Doctor S– to look at your file,” she said on the third phone call. On the fourth night, I received the news that I was indeed eligible for the operation. Elsa released this information only after I confirmed that the money for the operation was now “guaranteed”.

I spent days in a deep depression after these conversations, trying to figure out what made a medical secretary ask a dying woman about money before knowing if I was even a viable candidate for the surgery. I am not clear as to whether or not Elsa knew all along that the operation had been approved, and was only trying to ensure that I could pay for it. Perhaps she had the authority to give the go-ahead once money was secure. A doctor friend in the US attempted to comfort me, saying that this was a totally normal attitude, that it was how the medical industry functions in the US.
At any rate, an operation to save my life was worth anything, everything. What did Elsa know?

But it’s not about Elsa.

It’s the system that has pushed her to become “a bad [wo]man who understands profit” rather than a “a good [wo]man who understands what is right”, to quote Confucius (as Charles Simic does in his April 2013 blog post for New York Review of Books, “Health Care: The New American Sadism” (www.nybooks.com/blogs/nyrblog/2013/apr/02/new-american-sadism/). Reading this post reignited my urge to speak out against an injustice I had repressed for months. I loved you, America. Shame on you.

Elsa v. Ichinose (Japan v. the US)

I am now in Shiga Prefecture, Japan, after weeks of anticipation and a long journey from London. The HIPEC operation is no longer feasible, at least for now. It must be the sorrow of losing my mother that has transferred the cancer to my lungs.

Dr Ichinose who is in charge of my case had been doing his best to communicate all the right information to me, and he had expressed his concerns clearly since the beginning of my treatment with a new chemotherapy “cocktail”.

He told me how difficult, how expensive it would be for me to return to London by plane should my situation worsen, how much oxygen I would need to fly for thirteen hours, how dangerous sudden deterioration would be.

Dark notions and warnings that had put me in an equally dark mood. I wondered why he was so reluctant and uncertain – compared to the euphoric Dr Yonemura, whose eyes sparkled during a childlike ”eureka!“ moment when he reported the scan results: the chemotherapy was having an effect on the lung tumour.

Dr Ichinose suggested that I could leave the hospital and reside in a hotel, receiving chemotherapy as an outpatient instead. I began to get the impression that he didn’t want me to stay in the hospital; perhaps they didn’t have the space, or maybe the staff was becoming impatient on account of all the effort necessary to communicate with me in English. The hospital is situated in a little town in the mountains, and my brother and I are the only non-Japanese faces here.

However, it turned out that all my doctors were trying to do was find us a cheaper alternative; they were trying to save us money during our stay in Japan.

On the eve of my scan, Dr Ichinose came to my room to ask about my decision: would I continue chemotherapy in Japan, or return to London? I had already decided I would stay, as long as this was the course recommended by Dr Yonemura. He was clearly hopeful that we could get to a point where I would become a candidate for HIPEC surgery again.

In addition, the chemotherapy I’m receiving in Japan is offered in only four countries, and the UK is not among them. Britain’s National Health Service currently has no options for me except Phase One trials.

I explained to Dr Ichinose that the plan was to take things step by step, and do the next cycle of chemo in Japan until I have a clear idea of where things are going.

He said: “I hope you are not planning to go back to London by ship …”

“No, no,” I replied, “I’m not that crazy! I’m not sailing to London!”

“Yes, because it will take you a long, long time to get there … two weeks. You could also go by train through Siberia, but it’s too cold, maybe …”

“But why are you so uncertain?” I asked. “If my situation deteriorates, I shall go back to London. I’m not planning to die in Japan!”

“I don’t want to see you dying in Japan!” Dr Ichinose said. “You’d better go to the North Pole!”

“The North Pole?! Why? Plus, you won’t be there, in the North Pole!”

“Why not?” was his reply. “I can go too …”

“Will you go with me to the North Pole?” I asked. At this point, our giggles were filling the seventh-floor corridor.

“Yes!” exclaimed Dr Ichinose. “If we want to …”

I feel so privileged. Not only do I have friends ready to cross the ocean to be with me in a grim hospital room, but also a doctor willing to do anything “we want to do”.
In this spirit, I’m on a new journey of hope with the loveliest and the most caring people I’ve ever met.

***
I freaked out last night, and decided this is the time for this piece. I became dependent on oxygen for the first time.
This is for my mother, who did as she promised: she guaranteed the funds required for the operation before she died, at the end of February 2013. It’s also for Drs Yutaka Yonemura and Ichinose Masumi, and the staff at the Kusatsu General Hospital in Shiga Prefecture, Japan, who have revived hope in my heart – however delusional that might turn out to be.

(Thanks Mitch Albert and Julianna Bethlen)

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3 Responses to Because I freaked out…

  1. Julianna says:

    Dearest Roula, the whole writing group is sending you love. Me specially. Xxxxxx

  2. Anonymous says:

    I’m following you since certain time… and really I like your words full of truth… I feel that I’m so close to you through hearing your voice in reading… I don’t know how… but this is what I feel….
    I’m praying for you since I knew about your sickness… and even if you don’t know me… I want you to know that a person somewhere is praying for you and do caring about you….God bless you…
    Love to you from Cairo…XXX

  3. Tania says:

    Thank you for sharing all this and thank you for writing such a beautiful piece that has been haunting me since I read it.

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