So rewind to 25th August.

Getting ready for lunch with friends, I went for a shower and wee. Blood everywhere! Apparently its medical term is haematuria. I consulted Dr Google – the red urine could be because I had eaten beetroot for dinner the night before. OK let’s go with that! Next day it was even worse so I e-mailed my haematologist who asked for a photo sample! He said if it didn’t clear up to take the sample to the GP.

On the Monday it was a Bank Holiday so I rang 111 who got the on-call doctor at the Primary Care Centre to ring. I was told to bring a sample to the Primary Care Centre at the local hospital. Did that. They tested the sample and the on-call doctor informed me in the middle of the waiting room it wasn’t blood and there was nothing wrong. I did not believe him! I rang the GP who wanted a blood test and another urine sample.

 On the Friday I got a call to go and see him. It was blood and he wanted me to go to A and E as it was serious. By this time I had been bleeding for a week. A and E were brilliant. Traiged in less than an hour and given a separate cubicle because of my compromised immune system. I spent 9 hours on a trolley waiting for a bed. I was admitted to the Surgical Assessment Unit single room at 4am, put on a drip and catheterised with bladder wash. I saw a surgeon in the morning who was concerned and ordered a CT scan and cystoscopy. I had 2 blood transfusions as I had lost so much blood.

On the Monday I had the CT scan and on Tuesday a cystoscopy. They saw what I now call Terry the Tumour- a 4 cm raised lump in my bladder. For a fortnight I had bladder washes constantly. Then a TURB op under spinal anaesthetic. Again met Terry and watched on the screen whilst the surgeon scaled most of it away, took biopsy samples and cauterised it to stop the bleeding. Immediately after surgery he told me I had a very aggressive muscle invasive cancer. I stayed a couple more days in hospital and came home on 17th September. 

Finally the biopsy results came through on 17 October and I went back to see the surgeon . He told me I had a Sarcomatoid Carcinoma which was aggressive, fast growing and incurable. I had terminal bladder cancer. Tests showed I would die if I had surgery to remove my bladder so I was told I would die within 5 months.

Fast forward, I am still alive and actually doing well. Four doctors told me there was no treatment for my cancer. The fourth one read the European protocol that my friend Seymour had found for me on treatment and referred me to a radiologist who was also an oncologist. She at first said there were no treatments. However I said I was sick of their negativity and wanted a fair chance! She succumbed and gave me 3 options- 5 x weekly radiotherapy, 5 days radiotherapy or 20 days radiotherapy. I asked to see the Professor who was researching bladder cancer. He would not see me because in September the tumour was confined to my bladder. Once it was seen to spread he might consider seeing me.

Another CT scan in December showed enlarged lymph glands in my pelvis. I suggested it was my CLL. I was told no, it was metastatic bladder cancer. They then changed the treatment plan to 10 days radiotherapy and extended the area to zap as many of the lymph glands as they could. This meant my treatment was on the run up to Christmas and two days after. What awful timing! I was expecting my family from New Zealand. They came but it stopped a lot of the activities we had planned. Finally on 28th December the treatment ended. I was tired beyond belief, falling asleep just by sitting down. 

I saw the oncologist after treatment. After my insistence that the lymph glands could be CLL, they had reviewed my scans. They said it could be CLL! They also said they were no longer sure it had invaded the bladder wall. So she admitted she had over treated me!

I asked my haematologist to review my CT scans. The good news is he agreed with me, he is 99 % sure it’s CLL, coupled with a 29 cm spleen and enlarged lymph glands elsewhere. Also my tiredness was due to low ferritin. So on Monday I get a ferinject infusion and start the CLL treatment Zanabrutinib. I still have bladder cancer but it’s not as aggressive as I was told. It is 5 months since I had haematuria and I am still very much alive.

 The moral is – doctors can be wrong, don’t listen to them. Stay positive and hope. And above all, question every step of the way! I still have a long way to go, I might still die, but not as quickly as they told me! The emotional toll this has taken on my family and me is unbelievable. I am never going to listen unless they have categorical proof. If I hadn’t fought I could quite easily have given in. My trusty dragon is still gnawing away at Terry. Guided meditation has saved me. Never take things at face value. Question, research and ask for proof!🐲🐉🤞