Well now, my date for surgery has arrived, 13th August is the day where they will remove up to 2/3's of my tongue and do a neck dissection on both sides of my neck to remove the 2 tainted nodes on the left and then a cluster on both left and right.
I will also have my free flap reconstruction and I'll lose teeth from my left.

I'm nervous but also strangely calm and relieved that it's happening. This is down to you guys giving great information and support.

Before the surgery I'll have one more dose of pembrolizumab, which will be on 26th July.

I've also been to the pain clinic who changed my medication so that I can eat and drink again, and I've been referred to a counsellor after I broke down in the pain clinic.

So the countdown to remove the tumour, nicknamed Larry, has begun.

I’ll be thinking of you on that day Dizz_zzey. I think what you call breaking down is more like a catharsis (emotional release), a way of cleansing one’s self of all emotions so we can regroup and become strong again. Your defense mechanisms are kicking in for you. We’ll be with you in spirit that day. Hugs.

Thank you Mokie. Breaking down was definitely a release and I've been referred to a counsellor for extra support.

How are you feeling after your surgery?

Dizz_zzey,

I’m wishing the best of luck with your surgery! It seems like awhile you preparing for this day, and no worries, everyone gets nervous! I hope you’ll soon recover and be able to contribute to the site once again, but gel well first!

Good luck and best wishes!

Dizz_zzey, Pain for the first 5 days was pretty exhausting, but today I think I can wean myself off the narcotic as it appears to be making me depressed. All I want to do is cry. My F/U with my surgeon is next Friday and I’ll get the results of the pathology report whether the margins re clean. Haven’t gotten the results of that and I’m already fretting a reoccurrence. Never read about anyone that goes on to live to be old with this diagnosis. Hate reading the statistics cause it makes me feel like “what’s the point in all the debilitating treatment”. I guess this way of thinking is part of the depression. Have no family who lives close for emotional support. Worked for the military for years so friends moved on quickly. Probably need to seek mental health support regardless what the path report shows next Friday. I don’t think a referral from my surgeon would be an unreasonable request.

Mokie,

That’s a good idea to seek support! Your hospital should be able to help. I was severally depressed, actually suicidal, from induction chemo that hosiitilized me for 6 months, and some of the anti-depressant meds. Most people they may work, but they weren’t for me.

Oh, don’t look at statistics. I think they’re flawed, and may not represent you age and health. Your a unique indiduviak, so these
Studies may not represamy you. I think your doing good and handling things well ending soon after ivtook my ambianc

Thanks PaulB for your response. I know the first thing they want to do is put you on an SSRI. I don’t want to make a bad situation worse by becoming suicidal. What ever happened to just counseling sessions. Seems no one wants to take the time to just talk with the patient. Easier to offer medication. I can only imagine how you felt during that time PaulB. I guess it can hurt to reach out to any services they have to offer.
And I’m taking your advice. No more reading statistics and research studies!

Hi Paul, Tell me about it! The wait has been due to switching hospitals and then going onto a pre-surgical clinical trial, but it's nearly here!

Thank you for your wishes. I will no doubt be on here once I'm well enough to be

Hi Mokie, Don't look at statistics. My first team told me that I would need my entire tongue removed (total glossectomy) where I'll need a permament tracheostomy and permanent PEG, plus rads. Even after all of that gruelling treatment my 5 year life expectancy was only 30%. Then they asked me if I wanted to pursue the treatment. I'm not the average patient and so I will not accept the average statistics.


Please get yourself some therapy. I'm about to start mine. Having someone who isn't close to you that you can be so open with will help you massively.

My pain team seem to be very different to the USA as they have told me they are going to gove me as much as they can to make me as comfortable as possible. I've a meeting with them tomorrow to catch up over my current pain plan and discuss what they wish to give me during and after surgery. I like my team very much.

Not to go too far off topic...Just an FYI relating to what Dizz-zzey said in the above post about pain management.....

When I had my big surgery for the mandibulectomy my doc prescribed 2 different pain meds for while I was hospitalized. My doc knew me very well, treating me for over 2 years by the time of the major surgery. I had discussions several times about pain and how I did NOT manage pain very well, it could be debilitating to me. Im very glad he knew me so well and was on top of everything, he even knew my children and always asked about them as his children were similar ages. Anyway, he prescribed 2 different pain meds where once I woke up after the 10+ hour surgery I could switch them off and on so I never had to wait until a certain time to take another dose of pain meds. When in the hospital many patients in the US have their own little button that delivers pain meds when they need them, I didnt have this. But, having an alternative pain medication to fall back on when the next dose was well over an hour away wait was priceless!!! Sine you are going to see your pain management team tomorrow you may want to ask if this is a possibility.

Managing pain is very important part of the road to recovery. It negatively affects patients when they are in pain. You're very fortunate to have a pain management team to handle this!!! At least thats one less thing to think about with the upcoming surgery.

Hi Christine,

I didn't have to ask for the 2 different pain meds, my team suggested it for me. One will be put into my catheta and the other I'll be able to self manage. I'll also have liquid paracetomal (anadin), but thank you for the guidance

Thats great!!! Your team is on the ball!!! To me it sounds like they are on top of everything.

They are really on the ball. I feel confident with them.