59. Ignorance

You may have noticed I complain about mouth problems a bit. I’m resigned to the fact that I have them for the duration and beyond, since I still don’t know what they mean by ‘these will wear off once treatment is completed.’ Talk about vague. Actually, try not to talk as today is a Someone-Else’s-Tongue day and I have a spectacular lisp! I’m also pulling what Den calls my Alan Partridge Face after the trailer where he’s pleading for some water because his mouth’s gone dry. I call it gurning. 

Anyway, I know I’m not the only one who suffers with mouth problems to some degree or another and I’ve really had to search around for ideas about simple things like flavourfree, paraben-free, low foam and high fluoride toothpaste (not asking much?) and soft toothbrushes without stupid rubber additions to clean your cheeks and tongue (strip them, in my case). They do exist. Oranurse is best but has parabens. Oralieve is second best but has a mild mint flavour that can sting. Baby brushes are best but take ages to clean each tooth and have crazy little handles. Personally, I’m not bothered if I have a pink or green dinosaur. I’d rather just have a nice soft brush that won’t damage my gums.

 

I had my reminder that I’m due for my 6-month dental check up. I rang and explained that I can’t commit to an appointment at the moment and said I’d appreciate the opportunity to talk to my dentist for advice about dental care during chemotherapy. I was told that dentists are not allowed to give advice over the phone. They have to see you as a patient so they know what they are advising on. Hmmm. 

I received a follow-up email from the Patient Liaison Manager saying they had never had such an enquiry before but she’d consulted a nurse who advised continuing with my normal dental care routine. Yes, rip my gums to shreds with an electric brush, burn my tongue with minty toothpaste and aggravate every ulcer and sore spot to the point of tears. Sounds about right. In all fairness, she also included a pamphlet produced by Buckinghamshire Trust on oral care during chemotherapy that is, or would have been, very helpful at the start. 

What concerns me is that, while the oncology team support by providing various mouthwashes, all the information leaflets advise you to speak to your dentist. I would but I can’t get to see him and he ‘can’t’ advise me without looking in my mouth. What about the data from my last examination? What really bothers me is the ignorance. I find it hard to credit that a busy inner-city practice hasn’t had a patient go through chemotherapy before. Do they just give up on their teeth? I’d have expected it to be part of dental training!

Now the big problem. Part of my original chemotherapy plan was zolendrate every 6th week and then every 6 months for 3 years. The intention is to ensure the cancer doesn’t get the chance to return in its most common second option to the breast, the bone marrow. Sounds great. I had one treatment (it wasn’t pleasant but only lasted 15 minutes and the effects disappeared as soon as I was flushed through) but the oncologist stopped it, presumably because of the effects of the EC therapy on my blood counts. The plan is to reintroduce it once chemo is finished. One of the potential side effects is permanent jaw damage. I’ve always had an iffy jaw and was relying on my dentist to advise me on this. It could be a big decision. 

Anyway, I’ve emailed back and asked if they can do some research so that, when I do get to see him face to mask, he’ll at least know what I’m talking about. Funny how I always expect professionals to be expert and well-informed. But honestly, never had an enquiry relating to chemotherapy before? I find that hard to believe, given the sheer number of people I see going through the chemo factory every week! Unless they’re all wearing dentures.... God preserve me.