| Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Brian. YOU HEATHEN! No, just kidding ha ha.
I am not so sure that the pain and suffering, that many randomly seem to get, is from God. The scriptures state that all God wants to do is to "prosper us and give us the desires of our heart". I sure didn't desire cancer. I do believe that God allows things to happen to refine us and/or make us dependent on Him. There are many books written about why God allows bad things to happen to good people, but I don't believe that he is responsible for the bad things. The creation is less than perfect, as we are also, so earthquakes, asteroids, volcanoes, meteors, famine, tsunamis, drought, floods, unaccountable TARP, irresponsibly crafted nationalized healthcare, 12 trillion dollar debt, little kids getting cancer and just plain evil (both individual and institutionalized), etc., are part and parcel of it. We're quite capable of screwing things up much worse than God, in many respects.
When I was going through AA, many years ago, my sponsor who in atheist I might add, told me to take a piece of paper and write down all of the things I thought God should be - and that would become my God or "higher power". So, "my" God is merciful, compassionate, forgiving, my counselor and my strength. He was also balanced and in the middle - not radical left or right - a tougher act to follow than being radical actually. That was easy to do and I didn't have to have some other yahoo define to me what THEIR conception of God is. A major problems with many religions today.
And no, you won't hear me say often about "God never giving us yada yada", but Sone started the subject and since she mentioned prayer then it ocurred to me that she is a Christian or person of faith that they would understand that saying. It is, after all, a leap of faith to get through treatment.
The rules are that no religious dicussion unless the original poster brings it up in their topic first have been observed.
I understand why many people are skeptical - I was an agnostic for decades. I can thoroughly understand why many would be pissed off at God for getting cancer and having to go through this hell.
It is a component of my personal story that my faith helped me immensely to get through this.
I don't wish for further discussion, on my personal worldview to hijack Sone's thread so if any of you are interested in "slings and arrows" pm me instead or start a new topic in the blogs or something.
Sone deserves to have a place where she feels safe.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Sone,
I drank the VHC room temp and straight while my mouth was so sore and then I started mixing it with whole milk (half and half). My goal was to get as many calories as possible and I didn't give a rat's butt about fat content.
Keep this in mind if you are challenged down the road in swallowing.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Sone,
Everytime I come to the forum (which is everyday!!) I check this thread to see how are you doing. I can't tell you how proud I am of you!! You are so strong and doing just great. You make my day when I see your posts and see your stregnth. Only 14 more treatments!!!! This is awesome news.
In regards to faith, I believe everyone has their own interpritation of this. Like Sone said, if we don't experience pain and suffering how would we have sympathy? The love and faith of the people on this site amazes me everyday. The power of prayer is amazing, I think I said this on another thread..in my family we say noisy prayers. My cousin is dealing with ovarian and 3rd bout of breat cancer. She herself is amazing and the family says noisy prayers for her (and me) we are a loud bunch!!! God has to hear us:)BTW....she is doing great...radiation has been completed and we are really enjoying "INDEPENDENCE DAY"
Love to all xoxo
Last edited by suzanne98; 07-03-2009 07:07 AM.
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Sone, I am very proud of you. Keep the strength. You will get through this.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Sep 2008 Posts: 130 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2008 Posts: 130 | Sone, I haven't jumped into this thread, yet. But I like everyone else have been reading and cheering you on. I just wanted to say-You go girl! I can't wait to read you've made it to the end of this. Amy
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side. ND March 2, 2009 reoccurance dx'd Aug 19, 2009
| | | | Joined: Jun 2004 Posts: 155 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2004 Posts: 155 | Yes SONE!! You are not only getting inspiration YOU ARE AN INSPIRATION!! I came home from the hospital tonite bone tired after my husband had a bad day !! and I read through this thread reminded me that this battle and its aftermath are ONE DAY AT A TIME but there is a light at the end of the tunnel GOOD FOR YOU !! YOU just take it one day at time and GO GIRL!!
Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04 Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
| | | | Joined: Jun 2009 Posts: 13 Member | OP Member Joined: Jun 2009 Posts: 13 | 20 down and 13 to go!!
It is soooo hard! I've increased my pain meds again...I just hope and pray so hard that I can make it through the last 13, which will likely get harder with each treatment. Swallowing is so hard, and my voice is barely audible. My mouth and throat burn non-stop.
I need some helpful suggestions to battle mouth dryness. Of course, you all already know, that by now my salivary glands are fried and useless. How do you combat the dryness when you sleep? I sleep with my mouth closed, breathing through my nose, but still wake every hour or so with everything bone dry. My teeth, gums, tongue, roof of my mouth, etc. are completely dry and burning. I have a cup of water by my bed that I reach over to every hour. I swill the water in my mouth for a while, trying to wet everything, over and over again. Is there ANYTHING I can do to keep my mouth wet longer at night so I can sleep longer than one hour? This afternoon I could nap only 30 minutes before waking with the dry burning pain. Any suggestions??
And Gary, thank you, I do feel safe here. Sone | | | | Joined: Aug 2006 Posts: 199 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2006 Posts: 199 | Sone - sorry that I don't have any suggestions for your dry mouth, as I guess I was lucky and didn't have radiation only surgery. However I just wanted to tell you that I was just thinking about you and hoping you were still hanging in there - even though I haven't responded before, your emails really moved me, at first because of the pain and suffering you were going through and then to see how you found the strength, some of it from the folks here, to go on with your treatment. Sometimes it's amazing how strong you can be, and how much you can go through, isn't it?!! Hoping that you will find some light at the end of this long road!
Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
| | | | Joined: Dec 2008 Posts: 126 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Dec 2008 Posts: 126 | Sone,
If you haven't tried the Biotene products yet, it would be worth it to try them. They have a gel called Oral Balance that coats the mouth and gums which might be helpful, along with the mouthwash and toothpaste. Richard also used the mouth spray which helps to moisten the mouth. He would wake up with dry mouth and spray with this. You can also take it with you when you go out. The Biotene mouth products really helped to get some temporary relief. Do all you can to finish the treatment and keep posting... Geri
Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
| | | | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jul 2007 Posts: 211 | Hi, Sone,
I am so, so happy that you are nearing the end of your treatment. About the halfway mark I wrote the number of treatments left and crossed them off each day and it really felt that the end of radiation was near. My husband couldn't talk for the last week or two and felt pretty awful and it was about all he could do to literally get dressed and put one foot in front of the other and go to treatment (rather, be driven to treatment).
re/ dry mouth, biotene products help some but a cool or warm air vaporizer might help (at least to give you some sense of moisture).
My thoughts and prayers are with you - Sophie
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+ induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
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