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January 15, 2015, 18:20 1762 Author: Maria Aylen, translated by Anna Oliynyk donor.org.ua People should be aware of the fact that they have a right NOT to suffer from pain, be aware that there are ampules, pills and patches – and one can get them to control pain

The text about her last week and her last day is still not completed. I can’t concentrate and finish it, many details go away… But there is one thing I will always remember.

She just stopped breathing. I was holding her from behind, so I get back to stand up. I take away the second pillow and carefully place her body on the bed. I approach the laptop standing on the bed and write in the skype window – “now it’s over” – knowing that Ira who is “beyond the screen” is tense and waiting, counting the seconds of silence, and this message sent straight away is the most important thing to do now.

Mother and Father carefully gather all the napkins, towels and vessels with cold water, which we used trying to ease her fever a little, looking through blisters and ampules.

Unexpectedly, she started experiencing severe pains on Saturday. “Nothing was foreboding”. She only had leukemia. She used to feel pain before, but it was moderate and a pill of Tramal or Neuralgin was enough. On Saturday, she told about her pain. Saturday is a day off: both for doctors who treat palliative patients and for their managers who have magic seals to approve the prescriptions. According to all rules and regulations, my girl was to be left with her pain till Monday.

But she had me and I had a fentanyl patch which a friend of mine gave me and which was a real treasure.

I cut it into two pieces and applied it on her shoulder as she asked me, “close to where it aches”. The pain went away. The patch created the basis to relieve the pain, she took her pills in time and everything was fine.

On Sunday, she was almost unconscious. She came to consciousness, talked with us for 30-40 minutes and went back to sleep. It was about 20:40 when she finally retired into herself. An hour passed, two hours, three hours, but she failed to respond to our words and touches…

She groaned.

I kept listening to the intonations – she was in pain.

Mom injected her some medicine, probably Ketorol, I counted the minutes, but she kept groaning. The time was over, it didn’t help, and I applied the second half of the patch, my hands shaking. When you have a little child groaning from pain, you could do anything to stop it. Her groaning disappeared.

I promised her that I would take away her pain.

- It is 3:20, - said Father. It was over. I rearranged her body, sent a skype message and came back. When she gained back her consciousness for the last time, I offered her to change into something clean and all I could find was a blue T-shirt. Now it took a lot of effort as the neck of the T-shirt was narrow and was is hard for me to remove the patches from her shoulders. We couldn’t leave them on her body as we had no prescription for them.

We looked around our apartment carefully, taking away anything that could provoke questions.

We were walking through the dark neighborhood with Father – taking all the extra staff away from the apartment as if we were some criminals… Our child had just passed away, and I was walking and thinking why at this hour instead of realizing what had just happened, grieving, being next to her, we were “hiding the evidence” of what we had done – saving our child from pain. I would call the ambulance and the police to register the death afterwards – when we came back. WHY?

If I only think about it, I remember everything about those minutes we spent on the night street, just before the dawn, on Monday, May 5 and the feeling that it was all absurd.

Today I got a call from Olya. Olya’s father has severe pains, he often loses his consciousness and cannot take his pills, while there’s “no place” for injections and actually no desire to make them. Yesterday I told Olya to go and get a prescription for the patch. Now she calls me and says there are no such patches in Ukraine. Some company once registered and imported them but our doctors failed to prescribe them and patients failed to purchase them, so it made no sense to bring them again. And the registration period will soon come to its end.

I give a call to an oncologist who is I think the only oncology doctor in Ukraine prescribing his palliative patients patches to relieve the pain.

- Is there no other producer? So where could one get them?

- I know that some patients bring them from Europe.

- Under our prescriptions?

- No, it’s those who can get them there and bring them to Ukraine.

Recently our country made a huge step forward – morphine in pills is now available to patients (getting it is a separate story but you can make it if you know how), and it is a big success.

But a palliative patient, dying in pain, should have access to ANY forms of pain relief. At any time.

Pills are not enough.

Ampules are not enough.

Monday to Friday is not enough.

As long as the situation remains unchanged, we will still have patients crying from pain and their family members will have to pay a lot of money and will be beyond the law.

We have to work. More. Louder. We have to inform. People should know they have a right NOT to suffer from pain, should know that there are ampules and pills and patches – and those people have a right to use them.

So far, I will be looking for a way for the patches to be imported to Ukraine again…

P. S. If you would like to help those who need palliative care today, please read about the Palliative Program of the Open Palms Foundation, Facebook "Live every second, live every moment".

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