#17807 06-25-2005 03:07 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Michael, Lots of people are pulling for you. Please try to put your caregiver role on hold for a while. You really do need to focus your energies on getting well. I have sent you a private message addressed to Seth. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#17808 06-26-2005 05:00 AM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2005 Posts: 349 Likes: 2 | Throat pain this morning, like a strep throat feeling.. (maybe a 2.5 or 3 on the 1 to 10 scale) has me worried. Hot green decaf tea helps and I've been drinking lots of water. I read somewhere about water and oral cancers having some link??? Was I hallucinating? Anyway, I read about Dr. Masaru Emoto's water crystal experiments. http://www.hado.net/water_crystals2.html Sounds crazy, but I am writting CANCER CURE on each bottle of water I drink and visualize it killing the cancer as I feel it enter my body. I guess "hope" has overpowered my normal "skeptism". I have a quick question too: The surgery nurse told me not to take aspirin 5 to 7 days before the surgery (obviously because of the blood thinning effects), and it's for this reason I have stopped taking Omega 3 suppliments...But, there was another anti-pain med she told me not to take and I can't recall if it was Tylenol or Ibuprofren..? I need to take 'something' for the throat pain, occassional headaches and earache. Any thoughts?
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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#17809 06-26-2005 09:03 AM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Michael,
You can take tylenol , but not ibuprophen.
Good luck Wed.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#17810 06-26-2005 10:03 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | Michael I just wanted to add my good wishes for your surgery Wednesday. For now..I know it is hard but stop worrying about Seth and concentrate on Michael. He loves you and he will be there when you need him, its amazing what a person can do when they have to. Trust me I know! Take Care Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#17811 06-26-2005 11:14 AM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2005 Posts: 349 Likes: 2 | You're right!
I finally got Seth to register, his screen name is Seth.
Hopefully he can find as much solace and hope in the board as I have.
- Michael
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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#17813 06-26-2005 12:21 PM | Joined: Sep 2004 Posts: 153 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Sep 2004 Posts: 153 | Michael, My brother was diagnosed last year. In his case the doctors said surgery was not an option and they began radiation and chemo. Unfortunetly he was not at a comprehensive cancer treatment center. This is of utmost importance no matter how far or how much inconvience it imposses. Once we got him to one they scheduled surgery, but unfortanetly the cancer has returned. Anyway, my point is...If he had had surgery FIRST they could have followed up with chemo and radiation to kill any remaining cells. That was not an option for David since he had already completed his lifetime max of radiation. I say get in there and get every bit of that vile cancer out as soon as you can. Don't give it a chance to spread - because it will. It's like a weed taking over a garden. From what I've read and experienced, oral cancer is especially aggressive in young patients. As for disfigurment, please don't waste your time worring on that - you have plenty of other worries on your plate. My brother had is tongue, upper and lower jaw, floor of his mouth and part of his throat removed and he looked great after healing. There was only a scar behind his ear and along his neck that was not noticable and a tiny scar up his chin through the bottom of his lip and since he has always had a dimple there anyway, it was harldy noticiable. As for Seth, the best thing you can do for him is be strong. My brother has faced this disease with an unbelieveable amount of courage - after a year of treatment (and I'm talking some horrible experiences with chemo) he has never uttered a complaint. He has remained positive and even now, facing the final days of his life, continues to live EVERY moment, wanting to go and do things to stay busy. His strength is what has allowed me to remain strong. If he can handle this, I can as well. Your strength will give your parents and partner the strength they need to be there for you. Yes, there will be days of endless crying, days of high hopes, and many days in between. While my brother has never cried or waivered in front of us, I know he has with his wife. His little girl, who just turned five, drew a picture the other day and said, "This is my daddy crying." Although the words broke my heart, I was glad to know that he has released some of his grief through tears. You can be strong and cry, strong and be angry, strong and yet helpless. All of these emotions will come. This will be one of the hardest roads of your life. Take a deep breath, begin treatment and live each day. Your strength will make those around you strong and their strength will make you strong. You will be in my thoughts, Tonya
Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
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#17814 06-27-2005 07:17 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | What a lovely and touching post, Tonya.
Michael, My prayers and best wishes are with you as you begin your treatment through surgery. I will especially be thinking of you Wednesday. I do hope Seth comes here and finds support in his role as caregiver but I also need to say, from personal experience, that your energy can't be spent worrying about how he will get through it because you will eed to be taking care of yourself too much.
As a cancer survivor friend of mine told me when I was recently diagnosed and worrying about how my husband would cope, if there ever was a time to make it all about you, not him, this is the time. Seth will find his own way through and it may not be the way you would like to see him take but you have yourself to take care of first, here, and you can't control how he gets through it.
My husband, for example, did register for and has visited this site, but only once way back at the point when I had first found it and was pestering him to come here because it was obvious he was struggling with some of the caretaker role issues. There are also two caretaker support groups in town he could have tried to join and though he amde a lot of noise about going to a meeting he never has. As things have moved along, I have found that I have to actually defend myself against some of his stuff related to what is happening at times, because he doesn't want to look too closely at how this is affecting him (he prefers to beleive he can sail peacefully throughthis without being affected at all, ven when it is obvious he is)and so things like frustration and anger tend to come out sideways sometimes through inappropriate reactions to my treatment or innappropriate demands on me. Thank God I found a cancer therpist who has also done some couples counseling with us a couple of times when things have gotten bad in the past couple of months because this has been a real challenge for our relationship (and we had a great relationship with very low levels of conflict before this).
I believe, though, that it will deepen our relationship eventually but only because I now see some things we need to work on that I didn't see before when life was easy. On the other hand, because my main energy has gone to coping with, and now recovering from, my treatments, very often I've had to say to myself "Oh. I never saw that in him before" and just move on as best as I can AROUND it. Well, learning to do that may be a skill I needed to learn too.
Anyway, you and Michael and the rest of your family are in my prayers. This is somehting that will shake up the world of everyone who loves you too, no question, but just rememer you cannot necessarilly help them through it all at times. You just need to take care of yourself, as Tonya's lovely post about her brother indicates he is doing right through his last days.
nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#17815 06-27-2005 10:49 AM | Joined: Jan 2005 Posts: 191 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Jan 2005 Posts: 191 | Much like Nelie's experience, my husband too, has taken the caretaker issue in his own way. He has been a real peach about driving me to appointments, but I think caretaker's in general experience "burnout"
Sometimes I think he just doesn't get the fact that it's going to take some time for me to get back to "normal" and normal might not ever be exactly the same again.
Cancer is not only a freaky experience for those of us going through it, but shakes up quite a few people that connect to us. As soon as I shared my diagnosis with my only close friend in town, she flat out DISAPPEARED, either afraid she'd be asked to do something or just unwilling to watch someone she knew go through treatment.
My own parents pizzled out. Long story there that I won't get into, but basically I had to stop communicating with them entirely.
You will have to be the strong one Michael and there will be times where it gets frustrating dealing with people. Take it easy and take it slow, you will get through it.
In my own case, I've made it a point to be a wee bit selfish. After years of being the caretaker of the family and trying to please everyone, I view this particular time in my life to consider what's best for me. It was probably high time I made myself a priority.
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#17816 06-27-2005 12:49 PM | Joined: Jun 2005 Posts: 20 Member | Member Joined: Jun 2005 Posts: 20 | Hi Michael, as you have figured, a life-changing crisis like this can affect the dynamics of established relationships. Especially when the partner afflicted has always been the one who was 'the strong one'. Adjusting takes time, and counselling can help. Grief takes so many forms, there is your grief for the loss of your health and lifestyle, there is grief for the existing relationship dynamics .... typical responses are part of normal grief process, denial (this can't be/should not be) happening, so I will carry on as if it isn't and it will all go away ..... anger .... etc ... until a person is able to come to terms with the new situation and get on with what needs to be done. This is not a simple linear process but a rollercoaster, with swings from one stage to another and ups and downs. Is that as clear as mud? Straight up, your relationship with Seth seems to be experiencing a normal response to a crisis situation that demands a change in dynamics. There are counsellors out there trained to deal with it, and of course these guys on this forum. Hang in there, true love and rocky roads do seem to go together. You'll never know just how strong the bonds between you are until they have been tested. Remember, you need to look after you, for both of you. On a personal note, I am a divorced and now sole parent of five children (aged 8 to 20) and I came to accept years ago that I am the lynchpin of the family. Even though my decisions may, and often do! seem selfish to the children, I have accepted that I need to stay healthy, strong and sane for their sakes not just mine. I just hope that as they grow they will appreciate that one day. Best wishes and take care ... oceanangel | | |
#17817 06-27-2005 05:25 PM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2016 Posts: 284 | Michael & Seth,
Just want you both to know that I am here for either if you if you need anything. Like everyone keeps saying its a rough road but things will get better. I posted every question my family had on this board and always got very sound and good advice and there were many times when people on this website helped me sleep at night while my mom was in treatment.
Please know that I will be praying for you on Wednesday and kick that stupid cancer in the butt!
Hugs, Dani
Originally joined OCF on 12/12/03 as DaniO or Danijams Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04 surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
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