Since the last post, us Lawley’s have just been bimbling along nicely. We had time up on the North East coast with my family which was a lovely break and good to see everyone. I also had my scan in August, which thankfully gave us the news that the tumours in my hip and shoulder have successfully shrunk and hopefully will continue to do so.
However, recently, things have been less great.
A week ago, I started having pain in my left side jaw, teeth and gums. Come Sunday, the pain was so much worse, I’d had no sleep, my mouth was feeling numb and I had maxed out on all painkillers - I’d reached the end of my tether. I decided to phone 111 and get some medical advice. Thankfully, things moved pretty quickly from there, and I was sent to see an out of hours GP in Stevenage. Ross ended up missing Felix’s rugby so he could take me, but thankfully Duncan, another coach and dad of Felix’s friend, took him off and kept ahold of him all day.
The GP could see there was an infection there, but when I pointed out some exposed jaw, she said she thought it might be Osteonecrosis of the Jaw caused by one of the infusions I have to keep my bone mets under control. She got a second opinion, but as he didn’t see the exposed jaw, he said it was just an infection, I needed antibiotics, which she gave me a prescription for, and told me to see a dentist that day, if possible.
So, I was onto 111 again, this time to ask to see an out of hours dentist. It started getting tricky here, as Ross needed to take Imy up to Northampton as she was captaining her u13 rugby team (they drew), and they were already one coach down. Thankfully, after a quick shout out, my friend Tash dropped everything and took me down to Stevenage, again, to the dentist. After explaining the problem, giving my history and extensive list of medications, her having a look, and an X-ray, she said it was Osteonecrosis caused by the same drug the GP mentioned and to see my own dentist asap as I was deemed a High Risk Patient (!). She agreed with the antibiotics the GP had give me and sent me on my way.
To a dentist, this X-ray shows what BONJ is...
All this happened before 1pm on Sunday afternoon, which was brilliant. I’d have been out of my mind if I’d had to wait until Monday. Thank goodness for the NHS! I then went to sleep for a long nap.
Come Monday, Ross was straight on the phone to my dentist to get an emergency appointment. They know my dental and medical history, so would be able to see any changes that have happened recently.
The pain had started to reduce as the antibiotics kicked in, thank goodness, as the dentist (who was lovely) was prodding around, and also wanted a whole mouth X-ray. Again, he mentioned Osteonecrosis but gave it an acronym as BONJ, which standards for ‘Bisphosphonate-associated Osteonecrosis of the Jaw’. He said he would put a referral into my local hospital’s MaxFax (Maxillofacial) department as the X-ray indicated that the jaw below my left lower teeth had started to soften, and the fact I had exposed jaw meant that I was a High Risk Patient (that again!!). I was told the gum infection wasn’t really an issue, as he see’s them every single day and are easily dealt with using antibiotics, but the fact I have looked after my teeth and they are in good condition, and that the infection was only in one place told him something wasn’t right. So off we went again, to go home and think about what was happening. I was still in discomfort, so much so, I’d told my manager that I wouldn’t be able to work this week, as I couldn’t think far beside the pain in my jaw.
During this time, my appetite has decreased to all but nothing, so Ross has been encouraging me to eat soft food, soup, shakes, etc. It’s all very well and good, but I just don’t feel like eating. Especially as when I do eat, I’m not 100% I am dribbling due to my mouth being numb. (Imagine you’ve had a numbing injection in your mouth to have dental work done. It feel’s like that, all the time.)
I’ve also been exhausted as I can’t wear my CPAP machine due to it hurting my jaw, so my sleeping has been disturbed. It’s meant I’m either sleeping in longer in the morning, or getting up and having to have serious naps during the day. Today I missed meeting up with friends, and a Pamper Plus session at the Hospice. Meh!
Anyway, using Ross’s BUPA membership, we managed to get to see a MaxFax consultant on Tuesday evening. He was very nice, and really knew his stuff, being a hybrid between a doctor and a dentist with a whole lot of training on top. I had a whole mouth X-ray (again), and after examining me, confirmed the BONJ diagnosis, and explained to us why it happens.
The gist is, the bisphosphonate infusions I have as part of my regime to keep the cancer at bay. It’s a 1 in 100 side-effect of the treatment. According to Cancer Research:
“Bisphosphonates target the areas of higher bone turnover. The osteoclast cells absorb the bisphosphonate drug, which slows down their activity and reduces bone breakdown.”
The consultant explained to Ross and I that whilst the Bisphosphonate was slowing down the osteocloasts, which are type of bone cell that recycle dead bone cells, this in turn slows down the chance a cancer cell getting ahold of a normal bone cell and turning it into a cancerous one. This slowing down is a problem in cases where there is trauma, and the mouth is constantly undergoing trauma when eating, which is why this condition affects patients who take this treatment.
Moving forward, I’ll hopefully fight off this infection, the pain will stop and I’ll start feeling my mouth again. I’ll then be kept a close on my the MaxFax team at the hospital, as I’m a High Risk Patient (stop!), and any dental work that needs doing will need to be done under their care.
Longterm, I may be susceptible to more infections, which may lead to me being permanently on antibiotics. Also, my teeth may start to fall out as the bone softens underneath them. As they fall out, the healing will be more difficult, leaving the next tooth exposed…like dominoes. Of course I googled the condition…I wish I hadn’t. Some of the pictures were pretty grim. I’ve just got to hope mine don’t get that bad.
Whilst the condition has been found early, I’m feeling angry with the world that this is happening. Just when we start to think things are settling, and we are plodding along, thinking we are ok, and the rug gets pulled out from under us - again. I’m trying to be the happy, positive person everyone expects me to be, but even smiling hurts. I want to curl up in a ball and pretend none of this is happening. Just because we had good news from the scan, doesn’t mean it has to be cancelled out by this!
So, next we need to see what happens with the referral and in the meantime, I’ll keep on, keeping on. Unfortunately, it’s getting harder to do when I keep having these things thrown at me. But what else can I can do?