Red folder

Pain, how to deal with it or not...

A few days ago I met a very nice woman in the palliative care team from St. Lukes hospice. I had a review of my medication, and tried to come up with a new strategy to deal with the incessant pain that my primary tumour caused after damaging my spinal cord, and causing a spinal cord compression.

I recently had a lidocaine infusion to try to alleviate the neuropathic pain that the cancer has caused. The infusion has made things more bearable but the pain is still there. I am on a cornucopia of drugs. Morphine, Oxycodone, anti-epilepsiy drugs, and tricyclic drugs, and the NHS favourite Gabapentin. I try not to swig the morphine because it can depress your heart rate and breathing.

I have days where the pain saps your will to go on. I see it as a challenge. A friend of mine who was a Royal Marine said once that pain is a mere sensation. It is but it hurts.

From my hips down my legs live in a netherworld of visceral sensation. Everything feels like it is on fire. I rely on lidocaine infusions to function better. The next stage might be Ketamine infusions. I admit a dose of Vitamin "K" is not something I relish.

I have been fortunate in that I have an amazing pain specialist. Apparently one of the top specialists in the South West.

And what of the red folder? That's the emergency folder. If things get too much I can contact the hospice direct. Nice to know that they are there.

My GP said that I have had an horrendous year. From stage 4 cancer, to sepsis, near death and then a litany of complications. I was so fortunate having a team of top notch specialists and an amazing health psychologist I was given a bloody good chance. I was also given a relatively new drug polatuzamab, a monoclonal antibody drug that makes your chances of survival so much better. I have become a doctor's worst enemy. A patient who researches the drugs. Quite scary to think that I have a large shoulder bag full of medicines.

In one year I lost a cousin, and four of my friends to cancer. I am in full remission and I still find it difficult to believe.

Just have to get used to the psychological effects of pain, incontinence, and spending large amounts of time in hospital. Okay the cancer has gone, I have had to win through and make the most of what I have got. I have some incredible people supporting me. Life goes on. Hopefully I won't need the red folder...