Myeloma worries

Hallo, I have been having tests for over three months now ,due to pain in my head and shoulders, hazy vision, fatigue, and generally feeling poorly. At first it was thought I may have temperal arturitis, or polymialgia as I have severe arthritis.However following blood tests that kept coming back abnormal my gp was asking me general questions and I mentioned my sister had multiple myeloma. She ordered new blood and urine tests and these were repeated and have increased adversely. My rheumatologist and my GP have both made urgent referrals for me to see a haematology consultant. My GP said this would be about a two week wait. Two weeks have passed and no contact so I rang today and spoke to a secretary, she told me that my referral was marked urgent but the hospital have decided I dont present as very urgent so must wait six to eight weeks to see a doctor. Bearing in mind I have been poorly and in pain with infection after infection for months now, do you think I should go back to my GP and ask for an intervention to ask for an earlier appointment.I am suffering at the moment with an awful chest infection, I was pur on steroids last November and the side effects are awful, I am all swollen up as I suffer from fluid retention anyway, I don't sleep, indigestion is a nightmare but worst of all is the not knowing if I have this blood cancer or something else. Has anyone else had a similar experience waiting for a first appointment?

Thanks

Rosa

  • Hello Rosaroy,

    Poor you it sounds like you are having a nightmare time of it all! You did well to mention your family history and the fact that your sister has multiple myeloma. What a shame you are having to wait 6 to 8 weeks despite being told that your referral was marked as urgent.

    I think it might be a good idea given how poorly you are feeling to go back to your GP and ask for help to see whether you can be seen earlier or if there is anything he or she can suggest to help you feel better. Do mention to the GP that the steroids are giving you terrible side effects and also that you are not sleeping properly. 

    I also hope you will hear from others here who have had a similar experience waiting for a first appointment.

    Best wishes,

    Lucie, Cancer Chat Moderator

  • Thank you Lucie

    I took your advice and went back to.my GP as I now have an awful chest infection on top of everything else! My GP had written to haematology asking for me to be seen earlier than six to eight weeks, and I am booked in for more blood and urine tests. My steroids although not stopped have been reduced so I am hoping that the side effects may lessen. It is good to know there is someone out there that understands and responds. Thanks so much.

    Rosaroy