A message from me to all

Hi Ste

My surgeon did his PhD in Bladder Cancer and has papers published. He told me that findings from his research showed that the majority of fast growing High Risk/Grade tumours like mine only grow at the rate of 1cm per year. I am sure that there are other people out there who have seen much faster growth rates than that, but it did give me the confidence to go ahead with BCG therapy as we get checked so often. If those checks were not in place or the cancers had a faster growth rate I might have decided to have the cystectomy straight away. My brother died from Malignant melanoma when he was 47 and when his cancer metatasised and spread to his brain the growth rates of the tumours was phenomenal, so it was a real concern that mine had grown at the same rate. Now I'm on BCG therapy I'm pleased to know that I'll have a cystoscopy at the end of my 6 week induction and that I can have a look at the screen too. God willing it will be clear and I will then be able to move forward with the next 3.

Ade x

I was discussing this with my eldest son who is a biology graduate and has done numerous papers on cancer and he agreed he’s currently doing his masters sorry to learn you lost your brother 

Ste 

What field does your son want to work in? I've been a Biomedical Scientist for 38 years and the science and technology have moved on dramatically in my time. It's an exciting field to work in. When I started we didn't even use computers,  everything was hand written or typed!! 

My brother passed away 14 years ago. Cancer is a horrible disease and we definitely need more research to find cures. 

Ade x

Genetics IVF genetic counselling bioinformatics any of those would be his preferred choices Ade 

Ste 

All of those would provide him with a wonderfully fulfilling career. 

Ade x

Dear Ste, please ask your son what he knows about CYP2D6 gene variants, and 7% of the population having these. They affect a quarter of all prescription meds, as to whether the patient gets the 'intended therapeutic benefit, or not, or occasionally severe side effects.

Also the percentage in neuro-divergent and hypermobile people is much higher, and there's an increasingly recognised large overlap between those groups.

At one time you could pay to send a cheek swab to the USA to get tested for these variants, but I think the service stopped. The NHS doesn't offer it despite the thousands of people affected. Instead if your antidepressants or painkillers don't work much if at all, you strongly risk medical gaslighting.

Hi Denby I will be speaking to him later so I will ask him of course and let you know his thoughts on it 

Thank you so much Wel1979, I'll be very interested. After years of supporting my OH to try to convince dentists not to stick anaesthetic needles into him, because a] they will have ZERO anaesthetic effect and b] he will not budge while they drill, fill or whatever without, I try to spread the word about CYP2D6 in the hope it will save others from NHS ignorance. Consequences can be much more serious in some people.

Hi Denby,It’s good that you are informing people of this.I’m interested in people’s genetic medical history since I started the muscle disease research.Jane 

Hi Denby I have passed over your comments to him and asked the question what he knows about this this particular problem and I’m awaiting his reply I know he has been working.his job today but he has assured me he will look at this and pass his comments back to me