I wrote this a few days ago, just after I was transferred to UCLH. This is the first post for a while, and it is likely to be the last for a while longer. As you may or may not be aware, I have been in hospital for the past two weeks after being admitted with severe abdominal pain. And when I say severe, I mean screaming out, begging for help, uncontrollably shaking, turning blue severe.
It turns out I have a partial bowel obstruction, caused by the fluid from my CSF leak being reabsorbed and leaving a vacuum where half my sacrum was removed. This has sucked my small bowel back and caused it to herniate internally. Apparently the treatments to cure you of one thing can often have potentially life threatening consequences.
Right now I should have finished treatment. I should be feeling crap from my last round of chemo but be riding the tail end of that crappiness, ready to embrace life after chemotherapy. It is not fair because this should be a time for celebration, a time that I have longed for and eagerly awaited over the past eighteen months. Instead I have spent the past two weeks in St Helier, will spend the next week here at UCLH waiting for my surgery, and then will spend the next however many days here recovering from that surgery.
I am scared about what this surgery will entail, because we are not exactly sure what that is and what it will mean for me. More than anything though, I am scared about the pain coming back before they get round to operating. Over the past two weeks I have experienced multiple severe pain episodes unlike anything I have experienced before. I know pain; I live with the chronic pain from my surgery on a daily basis, and dealing with the acute pain during the recovery from my spinal surgery was no walk in the park. I hate pain like anyone, but I am used to it. This is not just pain though.
Each time I have an episode I start screaming, shaking, vomiting uncontrollably. I turn blue, wake up having panic attacks for the week afterwards, start begging anyone and everyone to help me. Physically I have been told they are not life threatening, but that is not the only thing that is important. This may not kill me but mentally what will be left if I have to go through any more of these episodes?
The day before yesterday it was uncontrollable and staff at St Helier were in the process of clearing a bed in the high dependency unit for me, so that they could sedate me, before I vomited, wet myself and the pain vanished. Yesterday I could barely talk to anyone, I couldn’t get any words together. I felt empty, hollow, in shock. As the evening turned into night and it was time for my mum to leave, I began to shake and could not make myself stop. Today I spent most of the day crying because I was so fearful of the pain returning. People say think positive, but it is not that easy. The pain might not be here now, but that doesn’t mean I can just switch off my memories of this pain and focus purely on that. If we were able to just do that there would be no need for mental health support, and people would never be affected in any way by their past experiences.
People might mean it with the best will in the world but they don’t understand, they don’t know. They have no clue about the past two weeks, they can’t comprehend that I might look and feel alright now but five minutes down the line I could very well be screaming in unimaginable pain.
So don’t tell me five minutes after meeting me for the first time that I’m better because I’m sitting here talking to you. Don’t tell me my nasogastric tube can’t have slipped because it’s taped securely, refuse to check it until I have to resort to tears to get you to listen me, then pat me on the back and congratulate me for noticing that something is wrong when you finally check my throat and find that you can’t see where it’s gone. Don’t tell me, “You don’t have mental problems” and admonish me for seeing a psychiatrist rather than getting to the root of the problem with a psychologist. Don’t insinuate that I am one of those people that just want surgery; I understand what surgery means, short term and long term, because I’ve had far worse surgery than this. You have seen me at my best but none of you have seen me at my worst. It’s not that I don’t want to be better, it’s that I don’t want to be told I’m better when I know that, without a doubt, I am not better.
I am counting down the days to my procedure, which I have been told will take place on either Wednesday or Thursday, and praying that it goes ahead. If it doesn’t I don’t know what I will do, because even if my symptoms improve I don’t believe they will stay away. For the past eight weeks I have been on off struggling with this partial bowel obstruction, so my condition improving markedly for a few days when I have not been eating is not proof to me that I am okay. I just hope my surgeons here understand that.