It’s 21st May the night before the chemo appointment. I’m getting organised with my typed list of questions as I had previously done with Mr Mullerat. I think I’ve got everything and I’ve also looked on the cancer research uk website which gives you a guide of some of the questions you may have forgotten about.
I ask Steve to review my list and what did he want to add if anything. Now my hubby does lots of research privately and is always one step ahead of me, but he just doesn’t tell me. We talk through my list and soon get onto personal stuff, stuff that isn’t on the list of possible questions like can I have my hair dyed? Can I sunbathe? and of course can I have sex?
Steve logs onto one of his trusted sites and reads that sex is not allowed without a condom, great! Apparently the drugs can be transmitted in bodily liquid such as the vaginal secretion, “so what about oral sex and kissing” “I don’t know” replies Steve it doesn’t say but it does say that you can ask any questions at the appointment and dares me to ask them. “I’m not asking that!” We just both thought it funny that sex and normal life isn’t mentioned really, no one talks about it. If you have cancer do you stop being attractive? Does desire stop? The only thing we could find was a line that said ‘you may feel differently about your partner during this time’ what the hell does that mean? If you are a man and go off sex then will the woman be offended and vice versa? The evening ended with jokes about radioactive fannies which hid the truth that the next 6 months on chemo was going to be a different life.
At the appointment we were seen not by Dr Weaver (he was obviously seeing someone who was willing to pay £240 for 40 minutes of his time) but by his registrar and cancer nurse Kim. The appointment as it turns out was only to go through the side effects and sign a consent form as death is one of the side effects, what a waste of time as not only did you have the side effects discussion once but we were told you had to have it twice. No start dates given! I couldn’t believe it, what a waste of time I thought plus my mom was really going to be mad when she found out. I just couldn’t believe it and now I’m angry.
So with my best polite I’m pissed off voice I say the words ‘let me give you some feedback’ LOL and I did just that, they had it coming in terms of managing people’s expectations, waiting times and just for cancer nurse Kim the ‘not phoning people back when you say you will’ they sat there and took it then the registrar tried to justify the delay in chemo by saying that my operation needed to heal first and that it would be fine. Now you can lie to me but please don’t ever insult by basic intelligence!! So why did Mr Mullerat tell me 2-3 6 weeks ago then? and you still aren’t giving me a date so we are now looking at 8 weeks, that statement just justifies the delay and I’m not that stupid. Steve just sits there knowing that he had better just let me rant and he can give me his feedback later, no need for a total melt down hey.
The registrar in an attempt to revert to being the helping, calm professional and bring the meeting to an end said the worst thing “do you have any other questions?” Well by now I just really couldn’t resist (LOL indeed I thought, I’ll have you) “Yes” I replied “What about oral sex?” Steve froze, the register stumbled errrrr and cancer nurse Kim went bright red, reached for her chemo advice guide muttering “oh I’ve never been asked that before” she remained red and sweaty under the pressure of the question fumbling with her book, I however was enjoying myself. She eventually said that oral sex would be fine but condoms must be used for sex. Well by now I’d had my fun so I didn’t challenge the obvious question of how does that make sense, if you can’t kiss with tongues or have sex then how can oral sex be okay? if anyone does know I’d love it explained to me.
At the end of the appointment I did show the registrar my swollen lymph nodes in my neck, she examined me, neck groin and tummy and said that they needed to find out what was going on inside me and that she would order a CT scan. We left and Steve said I’d been a little harsh on them, tough I thought and we are back to the waiting game again