One Year On

Mar 19, 2020

Has it been over a year?

I’m slightly aghast that I haven’t written on this blog for over a year. I’ve been adding posts to Facebook about how things are progressing, but this blog has been neglected. Mainly because it is a faff to update with the SVN and what not. Anyway…


When I last wrote a blog post, I nonchalantly mentioned Cyberknife on my neck and sacrum. What I didn’t realise was that this would involve a full head ‘cage’ for want of a better word. This was a sheet of mesh which was heated, fitted over my head, neck and shoulders, and then left for a short while to harden. For each treatment, I would lie on a bed in the Cyberknife room and the cage would then be put in position and bolted to the bed below me. This was a most unpleasant experience. I took a diazepam before each treatment which would last for about an hour. Meanwhile, the decision was taken not to treat the tumour in my sacrum, as an area very near to it had already been treated with Cyberknife and standard radiotherapy. It would have been a risk to treat the sacrum.

When I had completed the course of treatments, I was asked if I would like to keep the cage. I declined, however, it was suggested that I could use it in the garden for plants!

Neck Cyberknife

Hips don't lie!

Late on last year, I was having significant pain in my lower back and left hip. I was already taking morphine daily, but I needed something stronger. My oncologist wanted to rule out any mechanical problems before he thought about changing my management treatment. There began a three pronged attack.

Firstly, I had regular visits with the palliative consultant at the local hospice to get on top of the pain. Over the course of two months, I moved from mophine, to oxycodone, and then onto fentanyl patches with a large increase in dose.

Secondly, I went to see the surgeon who did the operation on my spine to partially remove, reconstruct, and fuse my L4 vertabrae to see if he could give a reason why I was in pain. An x-ray showed that it was, in part, directly attributed to the existing sacrum tumour. There was also a compression of my spinal cord caused by scar tissue from the surgery. This also could explain my pain. The treatment for this is conservative, although I could have an epidural to relieve the pain in the future, should I wish.

Thirdly, I went to see an orthopaedic surgeon to discuss the pain in my hip. There is a tumour in that joint which he said was the direct cause of that pain. I was also told that the only treatment that would eliminate the pain, would be a hip replacement. He said the joint was not in imminent danger of spontaneous fracture, so I could decide if or when I wanted the replacement to happen, depending on the amount of pain I was in.

All of this meant my oncologist was reassured that the pain was mechanical and he could keep any changes to my treatment back for when new tumours occur. Still, it leaves lots to think about!!

Jaw Infections

Lets jump to closer to present day.

I’m supposed to see the Oral Surgeons every three months as my jaw condition needs to be managed carefully. On Christmas Eve, I went to my scheduled appointment to find the department all closed up. After some investigating, apparently a few people had turned up for their appointment as there’d been an issue with the letter system that is supposed to send the cancellations out. Humph. They eventually sent me a new appointment which unfortunately was during the half term holidays when we were going to be away. Second time lucky, I got an appointment at the beginning of March. Why is getting an appointment so hard??

Right, we’re at the appointment, and I see one of the team. I’m a bit grumpy and explain I haven’t been seen for 6 months, the x-ray she’s looking at is from April 2019, and I’ve been having infection flare up’s once a month since September. Argh!!!!! She decides to send me for a x-ray (good idea!!). This itself is an ordeal. The first attempt was ‘lost’ after it was taken. Cue 3 radiologists, and someone from IT trying to find it with no luck. They asked if I would mind having it taken again. I would have quite happily done this 20 minutes ago, but hey ho. After this debacle, I went back to see the oral surgeons.

By the time I got back to the department, clinic had almost finished and as well as the doctor who I was supposed to see, the consultant was having a look at my x-ray too. This made me very happy, as I have seen him the most since dealing with the BRONJ, and he knows my case inside out. He asked if I had experienced any trauma in my left jaw as it was looking ‘odd’ on the x-ray. I explained that I hadn’t really had any pain on the left hand side and the only pain I had was coming from the jaw, gum and teeth on the lower right of my mouth. An infection had started 5 days earlier in this area, and I had held off taking antibiotics for 3 days so I would hopefully be able to show them what the infection looked like. Unfortunately, the antibiotics had kicked in and did their job well enough that there wasn’t much to see at my appointment.

It was decided that I should go for a CT scan to see what was going on with my ‘odd’ left jaw. Luckily, I got an appointment the week after, and my follow up appointment ended up being this week.

Quick side note
During this time the coronavirus worldwide pandemic spread to the UK. I have put myself into self-isolation which will hopefully reduce my risk of getting the virus. However, I still need to attend hospital appointments to see the oral surgeons, the cardiac consultant, and also to have my regular maintenance treatment. These, I cannot postpone.

So, we’re up to this week. Ross and I head off to the hospital (my first time out in five days) and find a parking space with little fuss. Even though there are fewer cars in the carpark, there was still an idiot who went round the one way system the wrong way. There’s always one! The hospital still has people milling around, but far fewer than the week before. Is the message getting through? Time will tell.

We got to the department after using nearly every hand sanitiser on the way. Then we get called in. It’s the Big Man again. He’s looking at the Radiographers report of the CT scan, and tells me I have a broken jaw. What?? He shows me the scan of my head (very strange), and shows me areas of my jaw which have been affected. They are no longer strong, solid bone, but have honeycombed into a weak, pitted, structure. The lower jaw joint has also dropped out of position. I was told it could be bone mets, another cancer hotspot, but he said he didn’t think it was. The only way to check would be by drilling a biopsy. No thanks. Although my Oncologist could overrule that decision.

This all sounds really painful, right? Yet, I can’t feel a thing! I have no pain, and from the outside, if I look at myself in a mirror, I can’t see anything. All very odd.

I’m left, once again, in the ‘Wait and see’ position. There’s nothing to be done, no magic formula’s which will unbreak my jaw. So, despite having to do it in isolation, we keep on keeping on.

Much love


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