"OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | HI there - Sorry you are suffering I know the pain is HIGHLY unpleasant I had it for a few years before I was diagnosed and I was in constant pain. It burned and just hurt. The tongue is very nervy so I am not surprised. Up until I had the biopsy it never bled, but because cancerous tissue doesn't really heal for about 6 weeks it hurt and bled. (until I had surgery)
You will get through this.
And despite their ages do be honest with your sisters. No need to give them the gory details. Simply tell them you have something wrong with your tongue - its a tumor. In order to fix it you will have to have a surgery and more treatment possibly afterwards. You may be surprised that you will be okay energy wise and pain wise post surgery. It's actually a blessing because you don't have the intense tongue pain! You will relearn to eat and speak okay. I used to swallow and chew on my good side, and pretty much anything would go down with a mouthful of water, or almond milk. You just have to be careful when chewing that you don't munch your new graft. This concern lessens as the swelling goes down.
You can talk about cancer to the sibs, but lessen the impact by telling them you are seeking out the BEST drs, and hospital and things will be okay.
My kids are older, but I would give them updates after drs appointments etc... I never lied, I never sugar coated it, I never said I'm going to beat this etc... I just told them that I was getting the best treatment possible. Initially I was almost afraid to make distant plans. But once I finished treatment and surgery etc... I would book something and say... if everything is okay we are doing this.
The fear is always there. But you can't live your life for the disease, you accept that it is what it is, you do what you can to fight it then you live your life and find your joy.
My dr. assured me that after I healed I would have only a bit of a lisp when I was tired (your original tongue takes over the work of the whole tongue so it's not surprising that when you are tired it is tired...) I speak very clearly now. People who don't know me can't tell I've had surgery. I do have to slow down and pronounce certain letters (t and d specifically) if I am excited, but that is common for all people.
I know it's hard to look at people who love you and worry about you and tell them that you have cancer, but the sooner you do it the less of a burden it will be emotionally.
hugs. And congrats on the not smoking - that's awesome.
Last edited by Cheryld; 11-13-2013 08:34 AM.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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