Update on unbelievable

FormerMember
FormerMember
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Not sure where to start 

I will go in order of my day yesterday 

Had my telephone assessment with occupational health they suggested  I have a risk assessment n complete all my treatment and not taking any of my controlled drugs oxycodone and fentanyl  patches b4 returning to work  well I said I'm on treatment for the rest of my life can u specify what part of my treatment r u referring 2 .and as 4 my medication if I dont take it I cant come to work due to the pain I will b in .... spoke to Macmillan afterwards they are going to help me as I'm protected by equity law as cancer is a disability................

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Good news my daughter was accepted on the young carers 

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Hospital appointment with orthopaedic consultant

I was told I also have sarcoma cancer on my left arm the rotator cuff and humerus bone  going to be transferred for treatment at the stanmore hospital in london 

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Daughter got a call at 8pm one of her close friends was admitted into hospital with blood clot in her lung n she had 3 mild heart attacks 

At 3 minutes pass 12 she was informed her friend had sadly passed away 

15 years old god bless 

                 HeartR.I.P CHLOEHeart

  • FormerMember
    FormerMember in reply to Tinalay

    Hi Tinalay & Daloni 

    My nurse has up the fentanyl patch to 100mg (highest they go )if that dont work I will be weaned of them and put on something else  

    Upped my oxycodone to 2.5 every 4hours  

    And gabapentin from 3 to 4 times a day they are 300mg each 

    Hopefully  that will work i do worry about taking so many medication she did reassured I'm not on mega dose like some of her patients so that made me feel a bit better 

    Kym xx 

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you both for suggestions to ring I know I can do this but always seem to forget Kissing heart

  • Hi Kym, I hope this works for you. In actual fact I don't think you forgot you can ring anytime, but are a bit like the rest of us and don't think of it because you don't want to be a 'nuisance'! However, that's why they are there and you are not a nuisance in their eyes as they know the difference between someone wanting attention and someone in real need! I hope this sorts out the pain for you. Give it some time but if it still isn't allowing you to sleep, then please let them know. They are the ones who know exactly how to tweak your medications. Please don't worry about taking the medication you obviously need!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • FormerMember
    FormerMember in reply to anndanv

    Hi Annette 

    You are spot on 

    back of my mind I know they are there but dont like being a nuisance 

    Its like when friends  come to visit ask how u r n find myself saying yes I'm ok knowing they have their own problems n dont want to worry my friends  

    It's a whirlwind sometimes 

    My pain has ease a bit managed to get a couple of hours sleep on the sofa  

    Take care kym xx

  • FormerMember
    FormerMember in reply to FormerMember

    Hi

    That’s good. I really hope it does bring things under control for you. Can I ask - have you ever tried anything like acupuncture for pain? I haven’t but I’m considering it. I am on much smaller doses of opiate than you are and I was worried about it to start with. I’ve now decided not to worry. It really seems like a massive waste of time and energy. However, if I can do something to keep the opiate use down, then it must be worth a try. 

    I hope you get some sleep tonight 

    xxx

  • Hi Kym, Can I ask why you slept on the sofa and not your bed? Or maybe you just dropped off unexpectedly!! I'm one of those people who can't sleep on the sofa, recliner chair, on a train or a plane, I've got to get into my bed! My husband is asleep while we are still on the airport Tarmac when we go on holiday, or when he sits in the recliner he's asleep within five minutes or so! Our grandchildren call it grandad's sleepy chair! oh how I envy him that! As you probably realise by looking at the time I post here, I don't sleep well at all! It's due to nerve damage. When I'm tired and want to sleep, my left leg starts jumping, then gets very hot and painful! I unfortunately couldn't tolerate OxyContin or Gabapentin but I hear from others they can work really well, they start you on a small dose and then slowly increase it until they find the correct level, so don't worry if that happens as they will be expecting it! Good luck!

    Daloni, I must admit I stopped worrying about the level of opiates quite a while ago. My opinion of them has certainly changed in the past few years! If they work, take them!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi Annette

    Yes, I agree with you about the level of opiates. My consultant at the Chronic Pain Clinic criticised the level that I was on and insisted I drop from 130mg twice daily of MST to 80mg twice daily by going down in weekly increments of 10mg to 80mg twice daily and put me on a new drug, Baclofen, starting on 100mg and rising weekly to 300mg daily.

    His reasoning for reducing the level of MST was that the high level of MST would take 10 years off my life!, however the pain increased significantly and my GP increased the MST up to 100mg twice daily. 

    I have an appointment with my GP in 5 hours about pain in my arm and of course the back pain again. She was hinting once that any increase from 130mg twice daily would possibly mean that I would 999lbecome non compos mentis, bringing with it the possibility that I may have to stop driving, which I certainly don't want so we'll see later.

    Take care

    Tvman xx

    Love life and family.
  • FormerMember
    FormerMember in reply to tvman

    Hi

    You really are between the devil and the deep blue sea! I hope you and your GP can find a path through this that keeps the pain under control and you on the road and able to live

    xxx

  • FormerMember
    FormerMember in reply to tvman

    Hi, Tvman.

    I hope your GP appointment produced a positive plan for managing your pain without impairing your mental abilities. 

  • Hi Tvman, I do hope you got some satisfaction at your GP visit! The same thing happened to me as you probably remember. I had spent almost four months reducing the Morphogesic and then when I saw the Liver Consultant, he told me to stop ALL the anti inflammatory drugs I was taking for arthritis as they were having a detrimental effect on my liver. He also said it would be "better" to increase the Morphogesic again to help control the pain. Referring to the arthritis pain and the nerve pain. I was also worried about driving and was advised by my GP to "top up" with quick release Sevridol 20-40mgs on days I wasn't using the car! I also use Lidocane Patches and Feldene Piroxicam Gel at night but am still awake!

    Please let us know how you got on and what your GP advised! I have a terrific GP, hope you do too! Take Care 

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!