Back in January, when I first waved the flag to get help with the pain in my back, I was given a cocktail of drugs to take. These were Diazapan (Valium), Naproxen (similar but stronger than Ibuprofen) and Co-codamol. As soon as it was confirmed the cancer had returned, the Co-codamol was switched to oral Morphine and I was given steroids as well. (Did you know that when you pick up a prescription for Morphine, it can’t go straight to the pharmacy in an electronic prescription, it has to be signed for at the doctors and also at the pharmacy - it’s a Controlled Drug.)
At that point, I was taking 5ml of Oramorph as and when I needed it, but it was becoming very clear that this wasn’t enough, and that was why I ended up in the Garden House Hospice. I was terrified of the prospect of going to the Hospice. That’s where people go to die! How wrong I was. From the very start I was enveloped by a cloud of calm, welcoming, loving help. I had my own room looking out onto the beautiful garden. Even in February it was obvious a lot of time had been spent on it. The nursing staff, the volunteers, the doctors, and the family support team were all there to get not just me, but my whole family, through what was fast becoming a tough stage in our lives. Sometimes it felt like I was walking through treacle, unable to see further than the end of the day.
Whilst at the Hospice, the doctors would monitor my medication. Everytime I asked for extra pain relief it was recorded so that I could be given slow release Morphine twice a day, becoming less reliant on the immediate hit of the Oramorph. By the time I left, I was taking 130mg of slow release Morphine, twice a day. That is a lot. I was also given a nerve drug called Gabapentin which helped alleviate the nerve pain I was experiencing. The nerve to my leg had been pressed upon causing me grief. The hope was that the Cyberknife would kill the cancer, and stop the pain. For some, having Cyberknife or standard radiotherapy is enough to kill the cancer and stop the pain. Unfortunately, what happened with me was the cancer had grown into the outside bone of the vertebrae, and had essentially escaped the confines of it’s prison. What then happened was, some of it had been killed, and as it died, my L4 vertebrae collapsed. I was essentially walking around with a broken back.
The human body is an amazing thing. When things are broken, it tries to fix it. So when my vertebrae collapsed, tissue began to grow. Unfortunately some of this tissue was cancerous and something (I’m not certain if it was malignant or benign) began to grow around the nerve to my leg, slowly crushing it.
The purpose of my surgery in June was to stabilise my back, as well as removing any rogue tissue, and freeing the leg nerve.
After this surgery, despite the initial few days when the pain was off the scale, I was put down to 90mg of Morphine, twice a day. I was able to function on the reduced dose and two months post surgery, I was thinking about reducing my dose again. I have had great out-patient help from the Hospice and I see a Palliative Consultant regularly. With his help, we made a plan of reducing my pain medication. I was able to come off the Diazapan quickly, as well as Zopiclone which is a sleeping tablet. (I had been in so much pain, I wasn’t sleeping, so I was given some extra help.) My next challenge was to reduce the Morphine. Together with my Consultant, we made a plan to reduce the dose by 10mg every three days. Easy! Or so I thought… It began well! 90mg down to 80mg down to 70mg…and then I got to 30mg. I started to feel a bit sore, but I was determined to keep going. Ross decided I was safe enough to drive the care, which I was over the moon about. My independence was back! It was great. I passed my driving test 6 weeks after I turned 17, and I’ve been driving ever since. Having spent the whole of 2016 thus far not driving, to start again was a huge deal.
So then I went down to 20mg…bit more pain…10mg…a lot more pain…and then I was down to 0mg. It was awful! I was in pain almost constantly. I couldn’t find a position I was comfortable in. In bed, I felt like my back was sending shots of pain all over the place and it was impossible for me to sleep. I was tired, grumpy, shouting at everyone, not nice to be around. That was it, I went back up to 20mg and I felt so much better. Except, mentally, I felt like a failure. I was useless. I couldn’t even stop taking painkillers. LOSER!
A couple of days after this, I saw the Consultant again, and I told him what had happened. He said I had done the right thing going back to 20mg, and that I was still only 3 months post spinal surgery. He told me I’d done ever so well to get to that point! He also suggested that I start taking the Diazapan at night to relax the muscles around my back, to hopefully get a good night’s sleep. I was given a good talking to, told to stop catastrophizing, stop being hard on myself, and enjoy life! Doctor’s Orders!
So, despite wanting to be off the Morphine, I’m not. I’m also still on Naproxen, Gabapentin and Diazapan. (The Gabapentin is still used for the nerve pain in my leg, as despite being free, it still remembers the crushing, and it likes to remind me that it remembers. Nice!) This is in addition to the tablets I have to take to alleviate the side effects of these drugs: sickness; constipation; itchiness. Oh, and not forgetting the hormone suppressant tablets, that are supposed to keep any new hormone receptive positive tumours at bay, and put me into an early menopause to boot. :-/
I may not be off the drugs, but I have to live for the day. My old school motto - Carpe Diem.