I still haven't seen Dr Tom again - because I've still not had a bone scan appointment through. Still a shortage of "nuclear medicine" apparently. No idea what they found on the MRI at this point either, because of the bank holiday. Unlike before though, I'm not in the slightest bit concerned about the delays. I have no intention of needing any treatment so the scan results are all academic aren't they? Still, if they can see what's causing this damn pain, that would be nice.
I went to a Fake Festival with Beckie on Saturday night, which as we were watching live bands (tributes to U2, Foo Fighters and RHCP) there was a lot of standing involved. Having been in pain mostly when sitting or lying it now seems I can't stand still, or even walk too much without some kind of payback. The tramadol, clearly aren't working for me any more - either I've become tolerant very quickly or the pain is worse. Who knows? I spent Sunday and most of Monday in bed - in too much pain to face moving and exhausted through lack of sleep. Monday afternoon I had to go out for veggies. By the time I got to the till I was nearly in tears. Standing in the queue I thought I might actually pass out, it was that bad and I was miserable (probably just overtired which makes things hurt more).
The nurse at Beating Bowel Cancer (they are in touch by phone, Twitter and Facebook) suggested I ask about fentanyl patches. They can last up to 3 days and the drug is 100 x stronger than morphine (which I'm allergic to). They even do it in a lollipop! Imagine having your drugs on a stick? I'm guessing that's for kids with chronic pain.
One of the lovely colorectal nurses rang me back today - left a message asking for their thoughts on pain relief, there are lots of drugs out there, but as MacMillan nurses are THE pain specialists, particularly chronic pain and obviously I have cancer so I qualify, she's referring me to them. Meanwhile I'll be queuing for an appointment at the surgery tomorrow morning - inconvenient for my boss though, who will have to be in the office while I'm out.
Here's hoping for some painfree sleep this weekend!
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4 comments:
Lisa,
I really hope you find something that works for the pain soon...
Ongoing pain is so awful and nothing is easy when you're in pain.
In March everything I did hurt, sitting, standing, walking, lying, the only relief I had was floating in the bath..and you can only spend so much time in the bath!
I too can recall standing in the supermarket queue thinking 'Am I going to make it through this checkout before I collapse in a heap'...
Constant pain is so tiring and everything feels so much worse when you're tired....
Would you consider something to help you sleep at night?
Huge hugs to you - gentle ones only though
Carole xxxx
I've been to GP this morning and have applied my first fentanyl patch, so hopefully tomorrow night will be pain free. Sleeping tablets have never worked for me when I've had them in hospital (several times). What was the cause of your pain Carole, do you know?
Hi Lisa,
Yes it was the tumour pressing in the base of my spine/bum area. It was a constant nagging, ongoing, draining pain that would make me feel so violently sick and completely exhausted.
Since the Radiotherapy ended (end of June) I've had NO pain, zilch....that's why I've been struggling with having the APR because as I'm now completely pain free, have put on weight and feel pretty well in myself I wanted to check the actual activity of the nasty little beggar! Hence my need for the PET scan.
I do know that I'm going to have to do this surgery though because I'm fairly sure this is just a temporary easing up of pain and it'll come back with a vengeance if I don't get it chopped out of me..
Fingers crossed for a pain free weekend for you Lisa xxx
That sounds exactly like my pain with the tumour and mine disappeared after radiation, in fact part way through the five weeks. There was a different more aching throbbing pain after surgery which was much more bearable, but this pain now, is a totally different story. So far, the patches have rendered me pain free, by now I'd be hurting a fair bit!
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