There are a few things that I get asked fairly often, so I thought I would put together answers to some of them.
Why are you so tired?
Someone asked me the other day why I’m so tired, why it’s taking so long to build up my strength. It’s a fair question. I wonder too. People told me it would be this way – people who had been through similar things, as well as my healthcare professionals. ‘You’ll need a staged return to work’ they said. Many people who have gone through similar things were surprised I started going back to work so soon after surgery. Others aren’t sure they’ll ever be able to.
I’m pretty good with 4 days a week at the moment, pre-empting that I’ll need one day to just crash. And I do. Four days in a row almost kills me so I need a rest. On my rest day, I can hardly move until about 2pm when I finally manage enough energy to get up. I’ll try stepping up to five soon.
But the question was why. I suppose it’s based on 7 months of chemo for a start. And on top of that, months of hardly moving at all. They say the effects of chemo can hang around for 2 years and I’ve been told to expect it to take that long to regain some sort of a normal life. Though I don’t feel like I’m that far away from it.
Then there’s surgery. My body has been using all its resources trying to heal itself. It hasn’t got many resources left to spend on getting me through a day of work.
Also, anaesthetic can take up to a year to get out of your system. I mean for weeks, months after surgery I couldn’t get through the day without a nap. I was exhausted all the time and everything completely drained me. I’ve got better than that, but I’m not better.
Then there’s the fact I can’t really sleep for long at all because I can’t breathe. Also my brain has been working in overtime since starting back at work. It’s not used to it.
Why can’t you breathe through your nose?
When they took out most of my top jaw, they also took the back of my cheek and the cartilage behind my nose. There was a possibility that they would rebuild the back of my nose with cartilage from my rib (!) but apparently my muscle density was really good so they just packed the muscle from my shoulder in there. By doing so, they blocked off my nose. It was intentional (so I found out some time later) – they did need to seal it all off so that I wasn’t effectively breathing through my cheek. It’s unlikely I’ll ever be able to breathe through my right nostril again. Not a nice thought. Hopefully eventually they’ll be able to do something about my left. I look forward to that day very much, I’m hopeful it’s possible.
Why don’t you have teeth yet?
It’s not because I can’t afford them, this too will be provided by my Guardian Angel, the NHS.
When they first put the new jaw/my shoulder/the flap in, it was huge. It practically took up the whole of my mouth. Over time it has shrunk back, due to the swelling going down as well as muscle atrophying due to lack of use (amazing medical science there).
I will be getting dental implants. I really don’t know anything about them or the procedure to get them but as far as I can tell, they are individual teeth that screw into your jaw. The new jaw needs to be properly settled before you start doing that. No, I don’t think dentures in the meantime are a possibility. The idea has never been mentioned, and besides – the new bits are fused to my cheek. There’s nothing for dentures to sit on.
They also want to make sure my first couple of scans come back with no sign of cancer before they go rebuilding teeth over the top.
I imagine the process of getting teeth will take some time but I’ll get back to you about that hopefully fairly soon.
You can’t grow teeth back naturally?
No. Wouldn’t that be the way of the future, teaching your shoulder to grow its own teeth… Not sure that will ever be possible…
Please if you have any other questions let me know. As you are all aware I am completely an open book. No question is a silly one and I would be happy to answer anything you’d like to know!