I am a 47 year old Mum of 3 boys....21, 19 and 9...all living at home.
I was diagnosed with aggressive superficial bladder cancer G3 pT1 TCC (CIS) in 2011 after 2 years of burning sensation and painful bladder including traces of blood in urine.
Immediately, after burning away the affected parts, I started BCG, weekly for 6 weeks then 3weeks every 3 months. Unfortunately/fortunately (depending how you look at it) I have a very strong reaction to the treatment and have suffered extreme burning and pain on any kind of movement, acute urinary retention leaving me catheterised on various occasions and after 16 doses decided in January last year that I didn't want any more!
I haven't had a recurrence of the cancer in all this time but because of the nature of this particular cancer and my age it has been stipulated that aggressive treatment is my best option.
Because of the rawness in my bladder every time I have cystoscopy it is impossible to see if the cancer has returned meaning I have undergone many biopsies with diathermy sometimes leaving me hospitalised and almost always with a return to debilitating pain and or semi incontinence. I felt I was just chasing my tail and am just starting to get my fitness back on a new regime of Blue light Cystoscopy 6 monthly at Guys Hospital.
I have not worked properly since before my youngest was born due to the awful side effects of the treatment on top of constant hospital appointments, countless biopsies, catheterisation, continence issues not to mention the usual trying to look after a young family, dog, cat, chickens, gecko, fish, husband.....and all that entails. Luckily my husband is supportive of me staying home to look after the kids and prepared to shoulder the financial strain as without permanent disability we have not been entitled to any financial support.
So here I am with a hopefully better year ahead with my next blue light booked for June.
If anybody would like to talk to me about their experiences I am happy to listen. I have pretty much just got on with things and don't know any one in my position so I know how lonely it can feel and would welcome some 2 way support!
