Oh goodness, it’s been such a long time since I did a proper update. Things have been hard in so many ways. Now I’m just trying to think of where to begin to really update you.
I guess a while back in July seems a good place to start, when I first heard the term “long term prospects” and was told that palliative care would be starting to had over to the pain clinic. This was amazing news but with the end of my radiotherapy came the beginning of my neuropathy.
Neuropathic pain is notoriously hard to manage. There are drugs available to help but they often aren’t the loan answer and patients are encouraged and supported in finding more homeopathic ways and also new psychological ways to cope. We have tried to find a reason why and I keep a journal every day but there doesn’t appear to be any link between my mental health and neuralgia.
That was great, but the problem was, we were in August and I was suffering almost daily of neuralgia attacks that would take me out for six, seven, even eight hours and usually would require a doctor to come and administer a sedative. It didn’t stop the pain but it did make me feel I was so disconnected from it that it at least allowed me to sleep. And the pain clinic? Well they didn’t have a slot until January 2020
The next problem was the sedative we were using when all else had failed was extremely addictive and so doctors wanted us to stop using it and it felt like it became a bit of a point of contention because while I understood their concern, there was no alternative given, no other drug to try, just wait to see the pain consultant.
Luckily, thanks in part to my palliative care doctor realising how low I had become she wrote a letter asking the clinic to expedite my case and we saw them in early September. He was brilliant and gave us hope & ketamine. That’s right – you are reading right, on top of my fentanyl (*cough cough heroin cough*) I was now taking Ketamine.
I did get a bit of a diagnosis though, I have post chemotherapy and radiotherapy neuralgia and I’m the 3rd person in 2 years he’s had a patient presenting my symptoms, he said I presented more severely than the others he had treated.
The ketamine has had interesting effects, it may have lessened the severity of my attacks but nonetheless they still happen. And the rest of the time the drug leaves me unable to sleep, feeling dizzy and nauseous too.
During my pain clinic appointment we also discussed the cancer hiding in my bones, it was not, thanks to my wonderful oncology team who allowed me a bone scan purely to reassure me all was ok on that front.
However we do have further concerns about other older pain returning and some of the effects it has had on me.
I wish this was a more positive blog post for you all, I wish I could tell you I’m way better and living the life I should be, but I’m not.
I’ve started doing some more creative writing, I seem to get really inspired at Like 3am so I decided to create a separate space for them. So if you’d like to check them out please visit WriterinRecovery.co.uk and let me know what you think.