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 warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your ongoing challenges getting a clear diagnosis, also to hear about the lose of your mother and brother. I lost my mother back in November so do understand the emotional time you will be going through.
These are challenging times in the NHS but no excuse for you not to get some clear information.
Having been in this situation a number of times over my 21 years cancer journey I did have to become my own advocate and get my pointy elbows into the system to talk with someone that could give me answers. So the main advice I can give is become a pest and keep pushing your GP, clinics, receptions..... to find someone that will listen.
A cancer diagnosis can be challenging in so many ways but talking with others who are walking the same type of cancer treatment journey will help you navigate this difficult time.
The Community is organised into cancer specific support groups so can I recommend you join our supportive Bladder cancer group as this will be a good place to connect with patients and families navigating the same type of cancer treatment journey.
To join a group just click on the link above then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens.
You can then introduce yourself by putting up a ‘New Thread’ or hit the box with the X on the top right (phones), you could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'.
It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.
Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
To find information covering diagnosis, treatments and pages covering most types of cancers can be found on our Online Information and Support Section.
((hugs))
Hi Mike, Thank you very much
At risk of sounding stupid, how do I copy and paste the above. I have tried the usual way but when I try to paste it has only copied one word. 
On a phone you should be able to put your finger on the body of the post. ‘Quote’ will show with the ability to stretch the box to select the text you want - copy - open up a new discussion in the Bladder Group then paste.
Get back to me if you need more info.
