Phoenix Rising

 

When I moved to a new city in June 2023, I believed life was on the up. Here I am two years and four months later crashing over and over like waves to the shore. I had plans. I joined a choir and made friends. I had invested in a piano tutor. I was volunteering when my mental health allowed it, and I enjoyed it. I had a partner and thought we had a future together.

In April it all came crashing down. After repeated viruses, and extreme fatigue since July last year, I developed new symptoms.

I have been suffering severe flank pain radiating into my abdomen, severe thigh pain and blood in my urine. After numerous tests and investigations, a multidisciplinary team meeting held about me by urology have diagnosed me with T1A Renal cell carcinoma of the right kidney. A CT scan shows a probable cancerous mass in the right kidney and a larger indeterminate mass in my left kidney.

This has exploded things mentally that I wrongly assumed I was on top off. My fear and distrust of the health service is worse than ever. This has been compounded by both past and present treatment. I feel like I become invisible in front of health care professionals. They don’t understand dissociation. They have no concept of what it takes for me to get to an appointment. I’m not talking physically getting there. The amount of inner work I have to do to work through trauma to get my mind and body calm enough to walk into an appointment is huge.

I wildly swing between I want treatment and want to do the best for my body, to I don’t want to know. If I’m this distressed at the diagnosis stage how on earth would I ever handle treatment?

I was put on 25mg of slow-release morphine in June. I became more and more ill, developing numerous other symptoms. I ended up paying to see a private GP. He was convinced that my body had gone into a pain response because of the morphine. He sensibly told me to see my own doctor and to come off it slowly and go on something like tramadol. I had fought with myself from April to June to avoid the morphine. I had ended up in A&E and had some oramorph which helped with the severe pain at the time and drove me to the decision to take the slow-release tablets prescribed by my own doctor.

That evening after seeing the private doctor I took my last dose of morphine tablets. My next appointment with my GP was ten days away. That Friday night I fumed at myself. I raged at the health care system for prescribing drugs to their patients without any follow up, or any idea at the damage they are causing. On the Saturday morning and against medical advice I went cold turkey. I felt I couldn’t wait another 9 days to see my own doctor to come up with a plan. I really felt like I was dying on the morphine. Those first three days were pure hell. Drenching sweats, severe diarrhoea, stomach cramps, severe nausea. I rode the storm, determined that I would come out the other side. The excess pains caused by the morphine started to fade. The brain fog that made my head feel like it was caged in a tight tiny suffocating prison cell started to lift. Although the flank pain is still just as bad and I’m still suffering terrible fatigue I’m so pleased to be off the morphine. The experience has distressed me so deeply that I haven’t taken any form of pain relief since. For now, I breathe through the continuing flank pain and rest when I need to.

My urology consultant has refused to give me an official diagnosis of kidney cancer despite the outcome of the multidisciplinary meeting. This has impacted my care and a is big part of my anger. The pain team refused to take me on as I don’t have an official diagnosis. I feel if I had been under the pain team they would have seen my rapid decline and put the puzzle pieces together quicker, that the morphine was making me much worse. I have requested to see a different urology consultant, but he won’t see me until I have a second scan in November!

Four weeks ago, after coming out of the storm of cold turkey I tentatively returned to choir. My choir buddies pick me up from home and are ready to bring me back home at the first sign of distress. It’s the only way I can manage to get there. I haven’t returned to piano lessons or volunteering. I am meeting up regularly with my volunteering buddies for that social outlet.

I feel like I lost the entire summer. I try to look back at those months, particularly from June to the middle of September. All I can see is darkness, pain and misery.

In that period my partner and I split up. We are both dealing with our own issues and it’s the right thing to do at the moment. It doesn’t stop me crying and grieving regularly. Grieving the past us and the future I thought we had together.

Although none of us knows what the future holds, I can’t help despairing often. I hadn’t realised the depth of trauma that is still bubbling away inside me. It saddens me to think I really wasn’t as together as I thought I was. If this truly is cancer in my kidneys…what then? After a lifetime of one health crisis after another I don’t feel like I have the strength to battle through another health crisis. Add to that the state of the health care system in my country and it’s a pretty bleak picture.

Or is it?

Is this my opportunity to step into some other form of healing? I have witnessed the miracle of my body’s ability to heal over and over again. I really shouldn’t have made it this far and yet I have.

I didn’t wake up this morning with the intention of writing this. I have been feeling sad and depressed today. I had decided to look at a course I had started last year. It’s the Upper Clarity School of Stone Medicine. As I rewatched the first video of section two, Sarah Thomas speaks about how the divine isn’t an external thing. The divine is in each one of us. It was in that moment I felt compelled to write this.

I think of the wonder of creation. How my body is a miracle. The way I sense things, feel things. The joy in the simplest of moments. Feeling an energy line under my feet. The clouds rolling past, the birds on the feeders. The joy and healing of music. Despite the darkness and pain and even terror of all the sickness throughout those summer months I didn’t miss a day of playing piano, even it was just for 5 minutes in a day. At one point I was so angry about becoming unwell I bought myself a digital drum kit. I’ve no previous experience of playing drums but now I’m learning to play and I love how it raises the energy in my body. Returning to choir and practicing even a little bit each day brings something I can’t explain. A magical experience that again raises my vibration…and my healing?

So yes, the future is uncertain and there is a wealth of inner work still to do. There are sadnesses and grief but there is still magic and miracles. Its ok for the light and dark to flow and intertwine. It’s ok to flow in all the states.

I will strive to rise like a Phoenix.

 

Phoenix Johnston

 

Additional comment: I do not advocate for anyone to stop their medication without discussing it with their health care professional first. It is dangerous to stop long term medication particularly opioids without a plan in place.