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THROUGH my breast cancer and now my brain cancer, this and that is talked about, but only now I realize than nobody that has given me diagnosis and treatments has ever mentioned the fact that pain is involved...I was not counting on pain on top of dealing with incurable brain cancer!!

  • Hi MarieT I am sure we have all had pain days and it's trying to deal with them as best as possible . Sometimes I might wake at 5 or 6 or 7  in the morning and will get up and walk maybe , 3,4,5 , 8 miles on a good day and find it really helps me mentally and physically. I have to do something rather than just sit there doing nothing All the Best Regards Marc  

  •    I have actually managed to get my pain relief down to Oxycodone quick release 20mg when needed. My biggest problem is nerve pain and I take pregabalin 200mg three times a day and Clonazapam 500micrograms a day but I can take this twice a day if I need to and I take regular Paracetamol so I do rattle when i walk. I was taking more Oxycodone slow release for the bone pain but found increasing the dosage made no difference to the pain so stopped the slow release completely and my pain hasn't increased. All my changes have been made alongside the palliative care team.

    I bet you wish you hadn't asked Slight smileSlight smile

  • I'm glad I asked, I'm very interested lol I'm really glad that you have found something that works well for you. I hope that I eventually find something that works for me. I guess it's just trial and error in finding something that works. And you're right, there's so many different types of pain and causes and you need to pinpoint this to get the right pain relief. I will speak to the doctor today and see what she can offer up. 

  • wow, walking that distance, under the circumstances is amazing. Well done you, shows your resilience and stamina. You're right, it does help both physically and mentally. I walked in the peaks a lot previously but on becoming ill and starting treatment I've not been able to go. I have dreadful fatigue. But you're right there are good days/bad days, still don't think I could tackle the peak hills mind lol 

  • Hi, I'm so sorry to reply so long after you first posted but I haven't been able to firstly sign in then when I could, I couldn't post or reply. I have been following this thread. You will find this hard to believe but I have been on lots of pain drugs, Nuproxin, Gabapentin, Oxicodon, Pregabalin, Morphine, etc etc, I have had slow release as well as quick release liquid and tablets of so many things, unfortunately none of them have worked. I have nerve pain as well as pain at surgery sites.

    i  can relate to others who are up during the night, every night! Sometimes I get up and go downstairs, so I don't waken my husband but others like tonight, I'm on my iPad doing jigsaws, reading the news, coming on here or reading my books on my Kindle. It is amazing what you can get used to, if you have no choice. I would love to be able to go for a walk but I have elbow crutches to take me from the front door to the car, any further I need a wheelchair. At the moment I have Butec patches, Ralvo Translucent Patches (that contain Lidocaine), Oramorph, paracetamol and Dihydrocodeine and it helps but the pain is still there, especially when I lie still and try to sleep. My legs & arms jump.

    I don't want anyone feeling sorry for me, because I am still here almost 10 years after diagnosis but all I'm trying to say is DON'T stop asking, if one thing doesn't work after a month, get something else, do that again if need be and I'm sure they will find something that works for you! Try Relaxation Technics, there's even a Free App called Headspace that is worth a look. Yes it is a roller coaster but I'm still here watching our grandchildren grow and that's better than all the drugs! Sorry for the long post!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi MarieT I had a stent put in  after they said I had a heart attack then had cancer did all the treatment got the all clear and felt fine , Then I started feeling ill often  tired dizzy queasy off balance , even blacked out walking to the kitchen , Kept going to the hospital A&E and they said they couldn't find anything , Until eventually they said I have heart failure , blah blah blah . I have been unwell for years on and off lol. but glad they eventually found the issue , I have since been told that my heart is ok and won't be a problem and cardiologist reckons I didn't have a heart attack. So happy days on that . All the Best Regards Minmax 

  • That's confusing isn't it? The fact they said they couldn't find anything, then said it was heart failure, only to be eventually told that you didn't have an heart attack and that your heart is ok and won't be a problem. Not that that isn't great news of course but still, do you actually even know what the problem was? Still, really glad to hear you got the all clear with the cancer and eventually, the good news on the heart problem. That's ace news!!

  • Hi Annette, it sounds like you have embraced your sleepless nights, that is a remarkable thing to do. I haven't slept in 7 years and it has been previously nothing to do with my illness. I got told by the gp it was the menopause and bladder problems. She gave me medication but still I woke up. I wish I could have embraced it too but unfortunately my zombie lifestyle didn't gel well with me lol I was run down and very irritable. Anyway, what's strange, is this past month, for the first time I have slept. I have no idea why. Not that I'm complaining, I'll take it for as long as I can. That's good to read your comments on pain relief and to not stop asking. Really useful!! Happy easter and enjoy your weekend.

  • Hi MarieT Yes sorry I forgot to mention they sent me for cardio version where they stop your heart and restart it , I was in the chair and they did a last check ECG and I was out of atrial fibrilation so they cheered and sent me home , It was ablation I had where they freeze or burn parts of the wiring in your heart so all that's grand , Just the Tumour in my liver and the cancer in both lungs and neck to deal with now. Happy Easter all the best regards Minmax