Hello, this is me

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Hello, I've had a bad 4 years with repeated sepsis (and organ failure with it last year) so am very lucky to be alive anyway.

After the organ failure I felt unwell for ages, but, got better. I had awful pain in my hip/thigh (doc not interested) then 6+ month of continuous kidney infection(s). Doctor, kept promising a referral but. It never got done.

I've. Had severe blood sugar plummets as far as 'unreadable' over the 4 years. Not diabetic. 

Then I moved out of area and had a new GP. 

Have sudden unexplained anaemia, not iron deficiency. Went through testing for gynae cancer; all clear. 

Blood tests showed CA19-9 was raised; a CT scan with contrast that showed a 2+cm growth in the upper ureta extending into the psoas muscle side. I was told by the GP it is malignant, I have cancer, he was very sorry and said, I had an urgent referral. Scan alo showed a 9mm and a mm kidney stones; big one in he kidney, small one behind the tumour - also have atrophied pancreas, CBD dilation of 12.5mm, a simple cyst and a 6cm haemangioma? Are these related?? 

But, the day before my first appointment (telpbne appointment - which felt odd considering diagnosis) I was admitted as they very quickly diagnosed another bout of sepsis (temperature went down to 21.9c, Pensive) and I, had emergency surgery to fit a uretal stent. 5 days in hospital with fluids and antibiotics

I've been home 8 and days. 

Was told I was in the 2 week wait to have a biopsy done (6 days left, no communication). But now I got a letter saying I need an isotope scan. 

I just don't understand - why is no one talking to me about the diagnosis or the actual plan. 

I'm sorry for the long post. 

  • Hi PDoff welcome to the forum. You have certainly had a challenging and difficult time over an extended period of time. Is it possible to make contact with the hospital directly and speak to them re the delay and why that is happening for you. I can understand the frustration of waiting and I think making contact directly with them would let them know you are concerned and can hopefully give you some further detail and reassurance. Please do let us know how you get on. Sending best wishes your way for now..

    gail

     
    Community Champion Badge

  • Hello, and thank you for taking time to reply. I've found it hard talking to my children but then one of them told me how they felt so I've been more open with them.

    I called, the hospital about when surgery will be. They called me back saying I was having a Pre-op Assessment on Friday the 22nd November. I called them again saying I don't understand how they give me this appointment when no-one even told me what surgery I was having. 

    Consultants secretary called back. My surgery is Monday the 25th. They're doing biopsy of bladder, ureter, kidney and also removing small kidney stone and attempting to remove the big kidney stone.

    Not long to wait now; it now seems to be moving fast.