Since my pain management appointment I have received a letter from the consultant, it is the best letter I've had from a hospital professional, ever. From the start it's evident that the doctor listened as he has written in detail about me, of when and how my cancer was discovered, my treatment including where I was treated and why. He speaks about the pain I've experienced and how that has been managed so far, the drugs I've been prescribed, the way they made me feel, everything.
The letter then goes on to outline the suggestions he has made for managing the pain from now on. At the appointment he not only detailed the ways in which I could ease the pain but he found examples on the internet. One suggestion was trigger point massage with a ball, another was a TENS machine along with massage and he didn't dismiss acupuncture. For each of his suggestions he showed me examples and even advice on where to purchase - apparently a toy dog ball can be equally as good as a more expensive massage ball.
All of this was in the letter which was nearly 2 pages long, the very first letter of this type that I have had since my diagnosis over 3 years ago. What a difference it makes, how much better you feel knowing that the consultant charged with your care actually 'cares' and cares enough to detail it in writing.
The very worst example of a letter I had was my initial diagnosis letter which I should have received soon after my surgery but actually arrived nearly 2 months later. This contained the nitty gritty, or should have done. It actually read less like a letter and more like a list. What made it worse was that I'd had to have a bone scan in the meantime and to save an explanation of that the consultant simply wrote 'bone scan clear' across the top of the letter he should have sent weeks previously. Not only that, this latest result appeared in the window of the envelope so the postman saw it before me!
So I am now taking the advice given and currently sit wired up to a TENS machine which is becoming oddly addictive. I'm unsure of whether it is actually relieving the pain or just diverting my attention from it but either way it's helping when it's on. The trigger point massage ball helps to a degree although I have to hide it from the dog!
The letter has helped tremendously though in restoring my faith in consultant care.
From running a fashion business to waking up one day discovering I have kidney cancer. I have recorded my journey from fashion victim to cancer survivor. From a daily journal I made in hospital, through my recovery & on to the road to fitness I have written of how I found out, what I felt, how I was treated - and what I wore.
Thursday, 25 August 2016
Friday, 19 August 2016
Pain Management Revelation
A couple of weeks ago I had an appointment with a pain management consultant, something I should probably have had at least 2 years ago. Over that time I have experienced pain in my back around the area of my remaining kidney and underneath my ribs. This has gone largely unexplained and has been evident since my nephrectomy over 3 years ago.
Following a visit to the Orthopaedic Hospital I was sent for physiotherapy which was a revelation as it was discovered I was lopsided. This was probably a result of me leaning away from the pain of my surgery when I was first out of hospital. The physio was very good and I was soon standing straight and so they recommended yoga. I began a local class which I still attend weekly and has helped tremendously. However, the pain didn't go away and hurt to such a degree that I was also taking daily painkillers.
The drug I was prescribed was Gabapentin, an anticonvulsant medication that works on the nerves and chemicals in the body which are responsible for certain types of pain and seizures. It has been proven to be very effective on neuropathic pain which is why it was given to me and it worked extremely well. The trouble was that in order for it to work I was taking a pretty high dose daily and this had side effects of which I didn't always recognise. As well as blocking out the pain it was almost mind numbing, having worked in a creative job I just couldn't focus on getting back to work after my nephrectomy. For the most part I reasoned that this was to do with the life changing event I'd been through but as time went on and my dependency on Gabapentin grew I realised it had more to do with the drugs I was taking.
When I was recently referred back to hospital care and went through having more scans and xrays it was a real shock to the system. My pain hadn't been improving and I had begun to have doubts about what may be causing it, I'd never been given a conclusive reason and the answer I had been given was 'probable nerve damage'.
Not having ever liked to take drugs of any kind it had been playing on my mind more and more that the Gabapentin was doing me more harm than good. If nothing else it couldn't be doing my kidney much good and so I made a rash decision to stop taking it. Rather than discuss this with my GP or wait for the pain management appointment I decided to just stop, no weaning myself off just take no more.
Bad move. I was so poorly, for nearly a week I felt dreadful. I was incredibly lethargic and felt extremely low, that awful end of the world feeling you get after a bad hangover only double. If this was cold turkey I don't ever want to take drugs again.
By the time the pain appointment came around I'd been off Gabapentin just over 2 weeks, I was taking a combination of cocodemol and paracetomol instead so not entirely drug free.
While waiting to go in I was given some Q&As to fill in about my pain which involved answering questions on a scale of 1-10. How bad the pain became in differing circumstances, what kind of activities caused it, how this made me feel etc. It was strange having to give honest answers when I generally try to brush over the pain and especially how it makes me feel, it was quite an emotional exercise.
I was pleasantly surprised when I was eventually called in to the doctor, he was remarkably nice and engaging, speaking to me not at me as I've often experienced with consultants. He firstly wanted to know a little more about the history of my pain and then began to look at the various scan images I'd had on his pc. I was asked more questions relating to the nature of the pain, what made it better/worse, how frequent etc and then he asked to examine me. Thankfully this only involved me standing in front of him while he felt different areas of my my back. As I hadn't thought I'd need an examination I hadn't dressed appropriately (nothing new there) and had to unzip a high waisted skirt for him to get to the correct areas.
When he did find the right place I thought I'd fly through the ceiling! He pressed his thumb in so hard and kept it like that for what seemed ages but was probably only 30 seconds. After my squirming and trying to wriggle away from him (which he seemed to find mildly amusing) he asked me to sit back down and said 'I have some good news for you'. Firstly the scans show no evidence of the cancer returning (I knew this) and secondly I can't find any nerve damage either. Now this was a revelation.
For nearly 3 years this has been the line I've been told, 'probably nerve damage' usually followed up with, 'not a lot can be done'. So to hear that this 'probably' wasn't the case was the best news I'd had in ages - next to the NED.
The doctor then went on to say that his diagnosis would be that I had a large knot of muscles in my back that was causing the pain. When I think back to the way I'd struggled with the surgery pain which had in turn caused my whole gait to become uneven this wasn't surprising. He then went on to describe to me the various ways I could deal with the pain including acupuncture, massage, trigger point massage, yoga and TENS machine.
I left his room feeling like I could walk on air I was So Happy! Prior to this appointment I had been taking a high dose of painkillers and living with the fact my pain would probably never leave. Here I was walking away with some proactive measures that I could do myself to help ease and in turn maybe cure the pain, I couldn't stop smiling. Furthermore, he told me that exercise including running wouldn't have to be avoided as long as I made sure to take appropriate action afterwards whether by massage or tens etc. which would help release the muscle tension.
I'll write more on the steps I've taken since this appointment in my next blog (I'm way behind...) - I'm still smiling :-)
Following a visit to the Orthopaedic Hospital I was sent for physiotherapy which was a revelation as it was discovered I was lopsided. This was probably a result of me leaning away from the pain of my surgery when I was first out of hospital. The physio was very good and I was soon standing straight and so they recommended yoga. I began a local class which I still attend weekly and has helped tremendously. However, the pain didn't go away and hurt to such a degree that I was also taking daily painkillers.
The drug I was prescribed was Gabapentin, an anticonvulsant medication that works on the nerves and chemicals in the body which are responsible for certain types of pain and seizures. It has been proven to be very effective on neuropathic pain which is why it was given to me and it worked extremely well. The trouble was that in order for it to work I was taking a pretty high dose daily and this had side effects of which I didn't always recognise. As well as blocking out the pain it was almost mind numbing, having worked in a creative job I just couldn't focus on getting back to work after my nephrectomy. For the most part I reasoned that this was to do with the life changing event I'd been through but as time went on and my dependency on Gabapentin grew I realised it had more to do with the drugs I was taking.
When I was recently referred back to hospital care and went through having more scans and xrays it was a real shock to the system. My pain hadn't been improving and I had begun to have doubts about what may be causing it, I'd never been given a conclusive reason and the answer I had been given was 'probable nerve damage'.
Not having ever liked to take drugs of any kind it had been playing on my mind more and more that the Gabapentin was doing me more harm than good. If nothing else it couldn't be doing my kidney much good and so I made a rash decision to stop taking it. Rather than discuss this with my GP or wait for the pain management appointment I decided to just stop, no weaning myself off just take no more.
Bad move. I was so poorly, for nearly a week I felt dreadful. I was incredibly lethargic and felt extremely low, that awful end of the world feeling you get after a bad hangover only double. If this was cold turkey I don't ever want to take drugs again.
By the time the pain appointment came around I'd been off Gabapentin just over 2 weeks, I was taking a combination of cocodemol and paracetomol instead so not entirely drug free.
While waiting to go in I was given some Q&As to fill in about my pain which involved answering questions on a scale of 1-10. How bad the pain became in differing circumstances, what kind of activities caused it, how this made me feel etc. It was strange having to give honest answers when I generally try to brush over the pain and especially how it makes me feel, it was quite an emotional exercise.
I was pleasantly surprised when I was eventually called in to the doctor, he was remarkably nice and engaging, speaking to me not at me as I've often experienced with consultants. He firstly wanted to know a little more about the history of my pain and then began to look at the various scan images I'd had on his pc. I was asked more questions relating to the nature of the pain, what made it better/worse, how frequent etc and then he asked to examine me. Thankfully this only involved me standing in front of him while he felt different areas of my my back. As I hadn't thought I'd need an examination I hadn't dressed appropriately (nothing new there) and had to unzip a high waisted skirt for him to get to the correct areas.
When he did find the right place I thought I'd fly through the ceiling! He pressed his thumb in so hard and kept it like that for what seemed ages but was probably only 30 seconds. After my squirming and trying to wriggle away from him (which he seemed to find mildly amusing) he asked me to sit back down and said 'I have some good news for you'. Firstly the scans show no evidence of the cancer returning (I knew this) and secondly I can't find any nerve damage either. Now this was a revelation.
For nearly 3 years this has been the line I've been told, 'probably nerve damage' usually followed up with, 'not a lot can be done'. So to hear that this 'probably' wasn't the case was the best news I'd had in ages - next to the NED.
The doctor then went on to say that his diagnosis would be that I had a large knot of muscles in my back that was causing the pain. When I think back to the way I'd struggled with the surgery pain which had in turn caused my whole gait to become uneven this wasn't surprising. He then went on to describe to me the various ways I could deal with the pain including acupuncture, massage, trigger point massage, yoga and TENS machine.
I left his room feeling like I could walk on air I was So Happy! Prior to this appointment I had been taking a high dose of painkillers and living with the fact my pain would probably never leave. Here I was walking away with some proactive measures that I could do myself to help ease and in turn maybe cure the pain, I couldn't stop smiling. Furthermore, he told me that exercise including running wouldn't have to be avoided as long as I made sure to take appropriate action afterwards whether by massage or tens etc. which would help release the muscle tension.
I'll write more on the steps I've taken since this appointment in my next blog (I'm way behind...) - I'm still smiling :-)
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