| Joined: Jan 2011 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | OP "OCF Down Under" Supporting Member (50+ posts) Joined: Jan 2011 Posts: 63 | Hi everyone
It's been a while since I last posted. I have had my cancer come back for the 2nd time while waiting to undergo chemoradiation in April. Since then, I have had 3 lots of chemo induction and now am on Eurbitux in conjunction with radiotherapy. I have done very well with holding it all together even though at times, I just felt completely deflated by the aggressive nature of this cancer. I know it has infiltrated a few places in my neck, but we still are not sure whether or not the chemo managed to shrink the tumours at all. My MO wants to scan me after rads, his logic is we hit this thing with everything they got. I have only been to 3 rads sessions, so far only a swollen neck and cheek (Right side where the tumours are)and a slightly painful left neck. The last few days, I have noticed my anxiety levels rising to a point where I feel it's harming my ability to get through this treatment. I know there are many people who have gone through rads without much problems but I was wondering if there any out there who felt the same way as I am....worried, restless and fearful? If so, how did you get through it all? Wish I could reboot this computer in my head..I just need to feel strong and brave!
Any advice would be appreciated. Thanks in advance.
Liza
SCC of the Buccal Mucosa (R cheek)- T1N0M0.10 hour Surgery on 27/9/10 involving resection with freeflap from radial forearm..clear margins. Neck dissection..negative nodes.Trachy, NGT, no rad or chemo needed at the time. Neck lump positive for SCC..again! MND 14/2/11. Waiting to have chemo and rads
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | Hey hon... I was going to Facebook you tonight. I know you're scared - maybe ask the dr. For some anxiety meds? I know it's hard not to think negatively because it's been a long haul, and you've had a few curve balls thrown at you but you are a fighter. Worrying is doing nothing for you but sending your strength, power, and energy out into the universe. Try to focus on other things, read a book, redirect your thoughs, draw, paint, do anything but don't think about your fear, or the outcome. This just drains you. You are doing what you can to fight this. You have to accept that. Take care of yourself, love yourself, and believe that you will get better. I know you're anxious the unknown does that to people. I don't know what will happen tomorrow, none of us do. You just have to get through today - find some joy in it. Even if you feel crappy. A small spark will help. Redirect your thoughts when the anxiety starts to creep in.
Hugs!!! We're all here to help and support you!
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
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Hi Liza
It is no suprise you are feeling anxious. On top of the fact that anyone in your position would be feeling overwhelmed, you are contending with the after effects of chemo and the initial effects of chemoradiation which has knocked your immune system for a loop. I bet that has a large part to play in your current feeling too.
You may feel like you can't but you know on the inside that you can and you WILL go to radiation everyday because you are a fighter. And I know this because you are a nurse so had a fair idea what this treatment would do, and you still signed on. Have faith in yourself, allow time to feel sorry for yourself for a few minutes every day and then kick yourself up the backside and go for that treatment or walk around the block that will give you a sense of accomplishment.
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Do anything but sit in the house. Keep busy and your mind occupied as this will let other thoughts enter your mind. I am alone and if I didn't keep busy, I would be worrying too. You can't conrol the Cancer but don't let it control you either. Good luck with the Erbitux. I had that too along with Rads daily. The worst I had were the rad seed implants and wonder if they were really necessary.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Liza...my dear, I love your spirit young lady, you make me smile and lately I need that. When I think of you I think of that chat we had joking about me dancing around in animal skins and helping you find a special male friend...remember? Still get's me laughing...of course out of context that makes me sound rather strange  I focus on that feeling I had literally laughing out loud when we chatted and think...that's what it's about. It's how to conquer any fear or face any obstacle, find the joyous moments that made you feel great and let them see you through the tough and scary times. You also have to guard your spirit...guard your feelings by upbeat,funny or inspirational music, movies, books, people...whatever. It's more then OK to know when you can't just "overcome" your feelings and seek help through medications. Drugs are tools, use them when you need them to get you to a place where you can cope, there's absolutely nothing wrong with that. Lastly...never stop reaching out or sharing. I find when I turn in on myself it magnifies all of those negative feelings. Keep your chin up sweet girl and keep raging against this shit, you got this. Love ya  Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Jan 2011 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | OP "OCF Down Under" Supporting Member (50+ posts) Joined: Jan 2011 Posts: 63 | Thank you to all of you who replied to my post! You guys are just awesome! I appreciate the advice and words of encouragement from all of you...I know it's not going to be an easy road but as long as i have you guys on my side, I feel I will get through this. I thank God everyday for giving me such a great support network.
@Eric, I always smile when I think of that conversation!!
SCC of the Buccal Mucosa (R cheek)- T1N0M0.10 hour Surgery on 27/9/10 involving resection with freeflap from radial forearm..clear margins. Neck dissection..negative nodes.Trachy, NGT, no rad or chemo needed at the time. Neck lump positive for SCC..again! MND 14/2/11. Waiting to have chemo and rads
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | You WILL get through this, Liza and you are doing exactly what you should be doing to survive as is everyone else in supporting you. I saw a PBS story about someone researching stress in Baboons and applying his research to humans. He noted that stress can cause all kinds of physical symptoms, including aging and obesity especially in the belly area. To combat stress he found that surrounding yourself with people who have like experiences, actively helping someone else, and using humor - ALL things which we all do here! So whether we are survivors or caregivers it is doing us all a tremendous amount of healing to be here!
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | Ditto to everything Anne Marie has written and put so well. There are so many here for you Liza and will always be there with encouragement to get you through your treatments. I am sure that Jim does not mind sharing some of his angels with you  Love and {{{{hugs}}}} Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | Keep fighting, sweet friend. You are on your way to getting rid of the monster and getting on with life!
Every day of treatment tips the scale more and more in your favor...every day, you are closer to being through the treatment and a step closer to starting the healing process. Then, as every day passes you'll start to feel better. Every day, you will be closer to putting it in the background.
Take it a day at a time...one step at a time...you can do it. One foot in front of the other until you are through the treatment...same with recovery. You are strong, you can do it!
Keep your eyes on the prize! All your friends know you can do it! We're with you whenever you need us! We're with you every step of the way.
Love you a bunch,
Sandy xoxox
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Lizzy, What Sandy said, you can take literally, one step at a time - one foot in front of the other. There were times when I was so anxious over my son and his struggle, I lay in bed feeling that I could just not go on. . . . and somehow I extended one foot over onto the floor and it was a start, s l o w, but a start. When that computer in your head starts crashing, you can reboot and restart it, and don't worry about those stupid error messages. You just delete them and keep going, substituting some positive "what-ifs" about all the things that could go RIGHT. As soon as you notice any downhill action, STOP and RESTART. Sometimes it takes many "restarts" but - You will get there! Also, tell your doctor what you are really feeling - he may suggest anxiety meds to help. Your health is important and you deserve all the help available to you.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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