Hi, I've been trying to keep a blog but this is a better forum for pain issues. I'm now two weeks from mandibulectomy etc. Very little pain in hospital but just as I left and over last 5 days there's been a miserable aching plus sore throat.It became bad enough to go to GP on Sunday. From her I got some relief but in stingy doses and I was soon back in trouble. On the pain scale it was possibly 5 but whatever, it took away my readiness to talk and eat and do my jaw exercises for my trismus. Tramadol did not work at all and neither did low doses of Oxynorm or Oxycontin. Rang hospital and saw ENT registrar who gave me stronger doses of codeine and Oxynorm as well as Ibuprufen. To cut a long story short the stronger doses of the old drugs together with paracetamol have done the trick. I don't really need the Oxy. Just writing this to share the info. Last time I had no pain on discharge from hospital but this time with the jaw hurting and surgery on top of previous surgery I'm feeling weird from neck up on left side.
Love to all
Maureen

Sorry to hear you are hurting. Its a HUGE surgery you have gone thru. Im actually surprised at how well you are doing with everything.

One medication that worked very well for me was gabapentin. Im not 100% sure of the spelling but this medication will help (your doc will know what it is), its for nerve pain. This was originally used to help control seizures but it works very well on nerve pain. It even comes in liquid form which will be much easier for you to take.

Best wishes!

Thanks Christine. You did spell it right and what's more it has the same name in NZ. We don't think my pain is nerve pain because it's more of an ache but Gabapentin sounds like a good one to have up my sleeve. And I'm having a good day today. Pain is being kept at bay and swelling is going down, albeit very slowly. I ventured out to the local shops on foot and weathered the questions and sympathy.

Yes, the recovery has been rapid apart from the swelling and pain. I have lots of energy ... Still don't have the pathology results. Might have to wait a week or two which suits me. I need to be in a good state to face them and the radiotherapy.

Haven't got a definitive answer on the size of the tumour yet - have to have that discussion. Can say that the arm flap/scar is no bigger than last time (tongue) in spite of what surgeon said. Told him I was in no hurry to talk about pathology and RT. From somewhere I have gleaned the philosophy that I'm on the recovery train at the moment and don't want to get off it till I've reached my destination in a couple of weeks.

I was warned that they might not have clear margins (they think they do), there might need to be a little bit more surgery or just radiotherapy. But somehow I didn't fret about that, just thought that I need to get through this step first. And the surgeon seemed very happy with my progress so I'll bask in that for a while:)

That's great you are doing so well and I respect the need to heal completely. But don't let denial derail you. I know it's not something you want to discuss or deal with at the moment and you are likely facing 5-6 weeks of recovery before you begin any further treatment, but waiting to get the results too long can actually prolong the process as I am sure you know. Particularly if they need to do another surgery. Do you really want to feel better and then have to go through it all again? Plus knowing where you are headed treatment wise will likely cause you to worry but also force you to push them into moving quickly. At this point waiting as you know can be a bad thing. Don't want to put a damper on how you are feeling hon, but at the same time this cancer can move quickly... hugs and really glad you're doing good. harness that and go with it.

Alpaca, I'm glad to hear you are doing so well. I would imagine after such a surgery, it is a good feeling to see and feel the improvement. Only you know where you want to be, physically and emotionally, as you and your medical team formulate a plan.

Enjoy every day and remember, a day with worry is a day lost. It sounds easy on paper, but it's much tougher in real life.

Best wishes you find some sunshine to bask in every day!

Thanks Cheryl. I agree with you in principle but it felt right to pull myself up from the pits of post operative wretchedness before thinking of the more distant future. My surgeon doesn't pull any punches. I've just told him I'm fine to wait for the pathology results before he tells me how bad/not so bad it is. He doesn't know himself yet. It's now two weeks since the op and I know they can take three weeks ... I hope to see him just after that three week mark. I'm going to prepare myself for the meeting ... more surgery would be devastating ... I'm going to have to dig deep to face that possibility. As for RT I've researched that tentatively: sounds bad but at least it doesn't require hospitalization.
But thanks for your words. Makes me realise that I need to gird my loins for the next step, especially now I'm feeling better.

Alpaca, you are doing wonderfully! 2 weeks post-op, and you're already hitting the shops? Wow. And I admire the fact that you're managing your outlook with such discipline. Learning to live with some unknowns and uncertainties is part of adapting to life with/after cancer, and you've got it down. That's a skill I'm struggling with personally.

Do you by chance raise alpacas?

I fell in love with alpacas some years ago but don't have any myself:(

I adore alpacas! I think it's the eyelashes. We've even vacationed at a bed and breakfast on a llama/alpaca farm. We've talked about raising them but it's really just a pipe dream......