| Joined: Jan 2013 Posts: 3 "OCF across the pond" Member | OP "OCF across the pond" Member Joined: Jan 2013 Posts: 3 | Hi, I've got a feeling I'm going to be thrown off site before I begin Anyway, I'm 61 years old female. My Husband died 14 years ago and I then got mixed up with a passive aggressive male who took me to the lowest blackest hole you can imagine. I walked away from that relationship but I have become a virtual recluse with only my pet dogs for company,a bottle of red wine and coffin nails which I've given up so many times only to fall back into the same mind set, 'I need a fag' Consequently as my symptoms are self induced I'm loath to go to my GP. I have no friends to talk to, panic in company I don't know and still feel 'less than' if forced to be involved in functions to 'meet people'. I just don't want to go. End of. I have a married Daughter whom I think the world of, but there's no way I'm prepared to inflict the care of her Mother on her when she has a 5 month baby boy to look after. I have had a constant 'tickle' in my throat and a feeling of a blocked ear, although my hearing isn't impaired and I think I have the onset of some form of oral cancer. Whilst every body else, I would imagine is trying hard to survive,I am happy to die. Once your dead your dead, and the thought of going through treatment and ending up in a care home without my dogs terrifies me. What I would like advice on is, if it is oral cancer I'm dealing with what can I expect in the way of progression of the disease? How painful a death am I looking at and what is the normal time scale from diagnosis to death if untreated? Any and all replies would be really appreciated. Negative and positive alike. Happy New year to one and all. Ruby
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Ruby
I doubt you will be "thrown off" the OCF forum for being so depressed that you want to die and are hoping to have a fatal oral cancer. Pushing fake cures, trying to sell something, promoting new age woo woo instead of radiation and chemo, now those are the kind of things that have posters removed. If everyone who ever questioned whether or not the treatment and all the complications were worth it, or if everyone who had ever asked themselves: what if I just let nature take its course were to be "thrown off", we wouldn't have many members. You do sound clinically depressed and should see your GP if only for that. Now as for your question: [quote] What I would like advice on is, if it is oral cancer I'm dealing with what can I expect in the way of progression of the disease? How painful a death am I looking at and what is the normal time scale from diagnosis to death if untreated?[/quote] Well, it depends. If you do have oral cancer and do nothing, it will kill you in time. How long? Depends on whether you are Stage I or Stage IV, if the cancer has spread etc. For my Stage IV, big old tumor, I was told one year. While it is a painful death untreated, and will progress to the point where you cannot eat or talk, if you get into a hospice towards the end and get adequate pain medication, my understanding is that it's doable. Your post screen name is right in line with the lyrics of the song of the same name: RubyTuesday: one of my favorite Rolling Stones tunes [quote]There's no time to lose, I heard her say Catch your dreams before they slip away Dying all the time Lose your dreams And you will lose your mind. Aint life unkind?
Goodbye, ruby tuesday Who could hang a name on you? When you change with every new day Still Im gonna miss you... [/quote]
I;ll bet your daughter will miss you too if you go that route. Charm
Last edited by Charm2017; 01-02-2013 01:52 PM. Reason: typos
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Hi, RubyTuesday you mentioned - "Consequently as my symptoms are self induced I'm loath to go to my GP."
Goodness, your poor GP would be out of a job if he didn't have people with self-induced problems to look after. Please see him - or skip straight to an ENT - and get this checked out. You may be pleasantly surprised.
I do understand that it is hard to go to doctors, though. Maybe try this - assemble photos of your dear grandson and dogs - look at them them as you make your appointment, hold them them as you go to your appointment: they will help you remember the beauty and light in your life and give your strength.
Best wishes from our side of the pond!
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | You will not be kicked off this site for asking questions about oral cancer. The OCF forum has a heart and is here to help people, not to turn them away.
You need help! Seek out a therapist or someone to talk with about your problems. Its nothing to be ashamed of at all. Many many people have all kinds of problems they feel are gigantic when their issues are actually very normal. You may need more than a therapist to help you with your problems, maybe anxiety meds wouldnt be a bad idea.
The reason you are here is about oral cancer. Go to an ENT and get yourself checked out. Dont delay as it could be something that is very easily treated and by delaying it could be a terminal disease. You really wouldnt want to die from oral cancer, its an ugly death. Your daughter and grandson would be very sad if you did. There is no timeline anyone here could give you as there are way too many variables. Get checked out and hopefully you will not have this terrible disease.
Best wishes!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Ruby,
I am so sorry for the place you are in life. This may sound strange but you have the right to do whatever you feel and nobody can tell you differently. You may only have a very bad sinus infection and left untreated for years it can do a lot of harm and even lead to death. If it is death by whatever you have versus a truly self-inflicted suicide type event, that too is your choice. Even stranger, my question to you is who will care for your dogs? They rely on you and if your true wish is to just let whatever you have take you out of this world please be considerate of them and find them a home before you go.
On the other side of this coin, many of us have continually battled not just the beast this disease is but issues from treatment. As for me, I shall battle for all of us every single minute I have left in this world. There is no give up in this guy.
Best wishes for you and whatever you choose, that is your choice to live with.
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Oh Ruby, this is very sad reading. Please go and see your Dr - at least for anti depression medications to get you out of the black hole. Maria is correct. We would do the medical service out of jobs if we refused to go near them for self induced illness. The first step is of course the hardest, but think of your daughter and grandson. How would they feel without you in their lives. Don't you want to see that Grandbaby grow up? From what I have learnt of oral cancer it is an awful death if left untreated. It involves raw ulcerating tumours that not only stink, but bleed freely and frequently . The pain would be unbearable. You would be unable to eat or drink. The tumours would make it increasingly difficult to breathe. You would lose the ability to talk . Please don't inflict that on yourself or your daughter. There could well be a simple explanation for your symptoms and an equally easy treatment. On the other hand should this be an oral cancer you really do want it treated as early as possible. The treatment is very doable. Please, please make that appointment. Life is worth living and should you take that first step to see your Dr and get those antidepressants you will understand what I mean. Please also consider letting your daughter know how difficult life is for you at the present. Please reconsider. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Jan 2013 Posts: 3 "OCF across the pond" Member | OP "OCF across the pond" Member Joined: Jan 2013 Posts: 3 | Thank you all for your very passionate and helpful posts,I will pluck up courage and go and see my GP, His possible wrath sounds like nothing compared to what I may face by doing nothing. I don't 'feel' depressed just a square peg trying to fit into a round hole. Thank you once again, Ruby | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | That's great Ruby Tuesday. Just take some deep breaths, make the call and get to the appointment. You are worth it. Please let us know how you get on. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Ruby,
I think I was where you are at now when I was stuck in bed for 2 years, then I read a book that made me look at life differently. I encourage you to read "Man's Search for Meaning" by Viktor Frankl, it's where I first read the Nietzche quote in my signature.
Hang in there my friend, thanks for reaching out.
Eric
Last edited by EricS; 01-03-2013 12:15 AM. Reason: always spelling
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Ruby - I'm so glad you decided to get an appointment with your GP. There's a lot of info on the main pages of this site that can help you prepare and ask the right questions when you see your doctor, starting with the "Diagnosis" page here: http://oralcancerfoundation.org/diagnosis/index.htmEric's signature quote from Victor Frankl's book is so very much on target. We all need a "why" to keep going and face what life throws at us and it looks to me like you already have many "whys" to get you going. You have a wonderful daughter and beautiful baby grandson that love you and would be devastated to lose you to something that may be very doable to recover from. If your daughter were in your shoes now - would you not want her to do everything she could to survive whatever she was going through? As for your pet dogs - they can feel loss and grieve when separated from their human family and they need you, too. If your GP exhibits any "wrath" or makes you feel uncomfortable in any way, you can easily find another one, preferably an ENT or Oral surgeon who is very experienced in treating cancer patients. It may not even be anything serious, and when you do find out what it is, you will feel a lot better. Stay with us and let us know what happens.
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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