Hi everyone
I am new here. Last year January 21st I caught Covid 19, I wasn’t ill enough to go to hospital. During that time my Mum and Brother were self isolating as my Mum had kidney disease and my Brother had bladder cancer.
I wasn’t able to go and see them. On February 19th I had a phone call to tell me my Mum had died from end stage kidney disease, 6 weeks later another phone call to tell me my brother had died from his cancer.
I struggled to cope arranging 2 funerals and clearing their houses for the council during lockdown.
I thought my extreme fatigue was due to the stress. I was then diagnosed with long Covid.
At the time I was suddenly in really bad pain when I passed urine and I was passing blood. I was told I had a kidney infection and had antibiotics. It appeared to have got better then the pain worsened and visible blood in my urine. Finally my GP asked for an urgent urology appointment. 2 months later he sent urgent request. Finally this year the head of practice rang the hospital 2 days later I had a referral letter, and 2 days later an appointment for a cystoscopy.
I was told I had a 3cm cancer on the bladder wall and 2 tiny ones. On the pre-op form it had carcinoma and on the letter to the GP a tumour.
I have no treatment plan and no-one sat and talked with me about what I wanted and were there any questions I wanted to ask. What happened to Patient Centred Care.
sorry this is so long
Hi and welcome to the group. Sorry to hear of the sad loss of your Mum and your brother, and now your cancer diagnosis. It is very unusual not to have any follow up, even in these covid times. Were your tumours resected during your cystoscopy or was it just a visible inspection? You really need to phone the urology secretary to find out what is happening with your treatment. Best wishes.
