counting down

Watching the end of the world. I hope that is not what we are doing today. I haven’t dreadsedan election this much before, even counting the third term Thatcher/Major years, or Reagan, or GW Bush.

Its been a hard day otherwise as well. People staring at me with distaste and shock. A waiting room full. I felt like spitting in each of their faces. I still do. A radiographer incredulous that my pain isn’t being controlled, but incredulous at me. As if there has never been another patient in the history of patients who can’t tolerate opioids. At least I managed to jury rig an arrangement of pillows so I could manage the taxi ride. It was hard on G. He is tired. But upstairs in class.

I am concerned as I am not really eating, even when I think I want something. Its hard to swallow. I don’t want anything I used to like. I noticed today that Ive lost a lot of weight. I still look normal. And Ive been this thin before. But what if it doesn’t stop here.

The papers say it is too close to call this election.  How can that be? I am staggered at the narratives that have solidified around Hilary. How is she not an ideal candidate? When she damned well is. How can people in such numbers vote for Trump? A horrible human being. A waste of space. A dangerous narcissist with a dictator fantasy.Though he is not the only one. Theresa May in her ugly, low profile way wants the same and, indeed feels entitled. What is going on with the world?

 

[My letter today yo the Patient Advice Liaison University Hospitals Birmingham]

I am writing to complain about the interaction I just had with the radiotherapy bookings at the QE cancer centre.

I am a patient with advanced cancer and in excruciating pain from tumour growth encroaching on sacral nerve roots, and which has escalated progressively as I’ve already been waiting weeks for palliative RT. I am booked for a CT scan pending that therapy this morning. Both my partner and I phoned this morning to ask if I might be provided with additional assistance at the entrance of the cancer centre as I can no longer manage to walk or stand or sit in regular chairs. We requested that a porter might be available at the entrance just before my appointment to get me at the least into a wheel chair if not a stretcher so as to prevent my having to wait in pain or force myself to walk to chairs that cause me pain, while someone hunts down a wheel chair after I arrive.

I was told off in no uncertain terms by a woman (I am sorry I did not get her name). She offered that I should cancel my appointment or essentially just suck it up. There was no engagement with me about my particular needs or situation. I am not in pain to deliberately cause problems for the cancer centre. Nor can I wait any longer to get a move on with palliative RT. There is no pain free method for me to get to the hospital. I was just hoping for some basic compassion and assistance with my particular pain and mobility problems. Being spoken to as if that was outrageous and unreasonable and being essentially told to sod off is not ok. This is a cancer centre. Patients there have cancer and I suspect not infrequently vexing challenges VIS a VIS pain and mobility.

I would appreciate a call back to discuss this…

Sincerely
Professor Deborah Lynn Steinberg

[They wrote back and said they would phone me this afternoon]

[UPDATE, the next day — The PALS team and the Hospital have been responsive, kind and apologetic and i appreciate this. They said they would give me some additional assistance when I get to the hospital. And they will raise it as a team issue for discussion. I was able to say again that I am aware that staff and services are under enormous pressure, but that I hoped that a way will be found not to take that out on patients who are already traumatised by their medical situation. Anyway, the upshot is that they have been nice about this.]

[my letter to my oncologist]

Hi –,
I’m just back from my CT scan where I was told my RT appointment will not be until next Monday.

Please can I urgently request that I am seen for RT as a matter or urgency this week. I am in such terrible pain, I don’t know how I can endure another week of wait until the RT and then another week at least until I have any hope of relief. I am in much more pain than when I saw you last Friday.

I do understand that the RT equipment is chock a block booked and there is tremendous pressure already on the system with patients needing treatment. But I am in so much pain I can only beg to be seen sooner notwithstanding.

A second request, is that for my RT appointment, whenever it is, would you be able to ask if I can wait for my session in one of the beds around the corner from the waiting area? It is very painful for me to sit in a regular chair.

With thanks,
Deborah

[S/he wrote back and said they would try]

 

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