BCG Week Three...or maybe not!

Okay so today was supposed to be my round up of BCG week 3, but considering that did not go ahead as planned this morning it might be a little tricky!


Instead of skipping this weeks post I realised that this is all part of the process so I should still document it too.

So this morning I was doing my usual thing of desperately craving caffeine, snapping at Tom because I needed caffeine, getting annoyed with everyone on Instagram posting pictures of their caffeine fix and getting syked up for treatment. Then the phone rang (always know its the hospital because: No Caller ID!), it was the staff nurse on the surgical outpatient unit asking me not to come in today.

Instantly I was worried it was because they had found signs of infection in my most recent sample, I began to panic a little, but I know these things are really common so was half expecting it at some point.

Turns out that was not the case at all, my sample, which i had dropped off as normal at my GP's on Friday morning, never made it to the pathology lab. As such they absolutely could not do the treatment today for obvious reasons.

I was devastated. It's one thing to have to delay treatment for infection, this sometimes cant be helped, but to have to delay because of a stupid mistake.....

Going through treatment makes you feel vulnerable, maybe I didn't realise quite how vulnerable until something like this happened but I just crumbled. A lot of planning by my amazing team of doctors and nurses went into organising when this treatment would happen. We asked for it to be on a Tuesday morning if possible so I could arrange childcare and we made sure it would be over and done with two weeks before Christmas to give me the best possible recovery time. We knew we were cutting it close, but we were all optimistic that it would work out okay.

Obviously this has all now been shot to shit. All I can do is hope that I don't get any infections that push things back even further and cross my fingers that side effects are over and done with before the holidays.

The other really scary thing, which I am trying not to think about too much, is how this could impact on the effectiveness of BCG treatment. I have only briefly mentioned before that I really need this to work because my treatment options after this are getting smaller and more drastic: essentially this means that if BCG isn't effective and I continue to have recurrences then my only remaining option would be bladder removal (this also usually means a hysterectomy at the same time) so as you can imagine the implications are pretty huge!

Me and my mum have since spent the entire morning on the phone trying to get the bottom of exactly what went wrong so that we can ensure it can't happen again in the future.

I'd like to stress at this point that although I am angry, that probably comes from a place of fear and is absolutely not directed at any one individual. If anything, all this does is highlight the massive strain on the NHS and I see it first hand every single week. It is genuinely terrifying to see how overstretched and underfunded it is.

Thinking about the future, for someone like me who now has a lifelong condition and absolutely no chance of getting medical insurance or being accepted as a private patient in the future makes me feel sick. I am not in the minority and the impact that under funding is having and will continue to have could have such a huge and devastating impact. We are so incredibly lucky to have the NHS and we need to do everything we can to safeguard it for the future.

Thank you for reading,

Katie xxx