| Joined: Jan 2013 Posts: 4 Member | OP Member Joined: Jan 2013 Posts: 4 | In the summer of 2011, my wife Becky had surgery for cancer on the back of her tongue. After the surgery she had very limited swallowing ability, but it was improving, and her speech was of course impaired. Radiation and Chemo therapy in Oct 2011 took away what little remained of her swallowing ability. She receives all her nutrition through a tube in her stomach. By March 2012 Becky finally convinced the Dr to take action to help with her swallowing. May 2012 was to be her first dilatation, but the Dr found that Becky's esophagus was closed tighter than originally thought and they would have to try again to go down the throat while also going up from her stomach. That procedure took place July 2012. In December 2012, the third dilatation was performed and she is finally beginning to take small amounts of liquid and pureed food by mouth, and by small amounts I mean in the tablespoons per day range. It has taken her so long to get to this point, and with the tube feedings giving her problems with nausea and digestion irritation, Becky has decided to stop taking any nutrition, and only take water, by tube. She pushes each day to increase her intake by mouth, but the struggle with swallowing is really draining her. This sink or swim decision has me a bit scared, but I comprehend her wanting the torture to end, whether by death or improvement. Since she has a DNR, and I will abide by it, when the time comes, if that is the outcome, who should be contacted, and should there be some prearrangement with them?
ShadowCG,stage 4 oral cancer care giver Dx spring 2011 Tx summer 2011 IMRT and cispltn fall 2011
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Hi, Shadow You are in a very difficult situation, and I'm not sure which aspect to think about first. Do her doctors know about this? 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 | First, welcome to OCF!
This situation must be very difficult for not just your wife but also you as her caregiver. I think being a caregiver is a very hard task. You must carry all the weight of the household on your shoulders plus be the patients advocate thru the ups and downs all while keeping a smile on your face. Not easy at all!!!
Im going to ask you a delicate question, Im sorry if its upsetting. I do not mean any harm or disrespect at all. Does your wife wish to die? Without nutrition, her body will eventually fail her and shut down. I imagine starvation is not an easy death. But thats what will happen if she doesnt get nutrition. I understand living on a feeding tube isnt easy (I use one too for about half of my nutrition). Many people can live good productive lives even if they use a feeding tube or have speech, hearing or other physical limitations.
Would a therapist or psychologist be able to help? It sounds like your wife may be depressed. Surviving oral cancer and living with its after effects can be hard to handle. Maybe it would help her to join a group of other like herself. OCF may be a resource to allow her a place to vent and make friends. She could see she is not alone in her struggles. Maybe have a long talk with your wife and let her know you need her. Everyone needs to be needed, they need a reason to get up in the morning, a purpose in life. Could you help her by making her feel useful in some way? Possibly she doesnt see her own worth and could use some guidance.
We are here not just for the patient, we can also help you as her caregiver. Im sorry but I dont know of any agencies that you could contact besides hospice when she gets towards the end.
Wishing you both all the very best with everything.
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: Mar 2002 Posts: 4,912 Likes: 57 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 57 | I have many friends I have made here that are on permanent PEG tubes. Their dysphagia and aspiration is bad enough where it is the only solution. One is employed full time as a code warrior/programmer, others are retired and traveling, one is Charm a regular here on the forum. The commonality in them all is that they have accepted that this is the nature of their future. For sure there are things missed, and there are compromises to live with. But all feel lucky to still be around, and all are leading happy lives with their significant others.
Said with great respect for others who have every right to choose their own path and live (or quit) in their own way and time, I don't understand her mindset. The path that she is on will end poorly as she is not going to get enough nutrition to stay healthy, or worse. I think that given this extreme choice, (again not desiring to offend) that she might be served well discussing this with professionals that deal with people with handicaps as a matter of routine.
For sure this is a handicap, and you can weigh that against people who have lost limbs, are wheelchair bound, are blind or whatever. I think that as long as your have your mind, your friends and family, you have a reason to find a way to endure and continue. I definitely think that there is still the opportunity to be a significant contributor to life and others. Counseling and intervention might realign the patient's perspective, if you could convince them to delve into that kind of interaction.
About 50 million Americans live with disabilities, 50% of them severe impairments. I like EricS's favorite saying, "He who has a "why" to live can bear with almost any "how"." -Nietzche
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | 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 Shadow
Maybe a counsellor associated with a hospice or just the hospice for advice on how to handle the future?
I personally have no issue if she is choosing this way to die, but she (and you) needs to be very clear that there is a big risk that this is what she is doing.
I guess what I am trying to say is that your wife needs to understand the consequences of not eating, and everyone around her needs to be sure the decision is an informed one and not driven by depression or some other chemical imbalance, that might be clouding her judgement.
Clearly as her life partner and carer, you are already aware that you don't get to make the decision for her, and it is your job to support her in whatever she needs to do, but you DO get a vote at least. Are you okay with what she is doing? Are you confident she is making a considered decision and is fully aware of the consequences?
I am very sorry you are both going through this, it is something I dread myself - either making such a decision or supporting someone who has.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Shadow I do not know the full story of your wife ,only what you shared. Obviously I am very biased here if the only reasons your wife plans on suicide (make no bones about it by euphemisms like death with dignity, etc) are her speech impediments and a lifetime on a feeding tube. But even I supported some poster's suicide decisions when they were had no spouse or loved one in their daily life,or very lonely, they were past eighty and had no compelling reason to live. Your wife does not seem to fit that, Instead my opinion is that the medical community has failed her spectactuarily in not informing her of basic ways to deal with what in reality are not as bad as they appear. Bear in mind that from your description both my speech and eating issues are far more severe than hers yet as Brian posted,,I have a good life despite them so I think my opinion is based on fact and proven by experience First, she should have an AMT mini one low profile feeding tube or "button" put in to replace her undoubtedly horrific Mickey tube. The difference is life changing. Second, she needs to buy a Vitamix blender and then she can eat most of the food you do and even have meals together again Third, she needs to see a prothodontist to get an oral appliance that will greatly improve her speech Fourth, she should be seeing a speech language therapist Please try and convince her to use the lousy feeding tube and canned formulae inthe interim. Death is forever so it is not unreasonable to ask for 90days more to. Get all 4 things done. Ironically, I am typing this advice from a hospital bed after complications from my third round of cancer. I had base of tongue cancer and surgery plus three different rounds of both radiation and chemo so trust me, I know very well just how difficult this can be and of course I have been depressed and felt like giving up. It is normal. But it is fair as a caregiver to ask for three months of trying to ameliorate these issues My doctors are here and I. Have to go for now. Later today I will send links on each om 4 points. Don't give up on her or let her give up on herself without at least trying 4 simple steps Charm 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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Shadow - I sure do hope that you and Becky will at least give yourselves a chance to put into practice the suggestions above before considering giving up on what could be a very meaningful life. You may not be able to see the light at the end of this dark tunnel you are in right now, but the light is there. You've been given hope by some of the very best we have on this forum. Hope is good. Embrace it!
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I think everyone has such thoughts when times are tough, and Charm summed everything up nicely. I had a DNR, and did worse, when I was in the hospital for several months, paraylized, lost 110lbs in a few weeks, with no sign of recovery or hope, as a result of my first treatment, which thankfully was not needed. Actually, the hospital tied me to the bed for my own protection for a few days one time. Today, you would not even know what I went through unless I told you. Your wife made improvements, Medicine and technology is improving, and there is always hope, and ways to work around any disabilities, which may only be temporary. Maybe your wife needs professional help as a suggestion. Good luck with everything.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jan 2013 Posts: 4 Member | OP Member Joined: Jan 2013 Posts: 4 | To try and fill in some of the blanks so folks aren't doing it on their own:
My wife does not want to die. She is not contemplating suicide. She is getting nutrition. Since my original post her intake by mouth has increased dramatically, but, is still short of ideal.
As to Charm's four items: 1. Her tube issues have nothing to do with the type, brand, style of g-tube, or the fact that she may be on one for a long time. All the formulas make her ill (ie: nausea, vomiting, diarrhea, etc.). This is a placement issue and there isn't an alternative location because this is the alternative location (Best location destroyed the first time). 2. We have blenders and food processors and she is taking by mouth what I eat, and we have meals together. 3. & 4. Her speech impediment is not caused by her teeth or jaw and she is seeing a speech therapist.
Right now the Dr's are not going to put her on hospice. They probably won't until it is too little too late. I know there is a good chance she will not reach her nutritional goal, and want to be prepared.
ShadowCG,stage 4 oral cancer care giver Dx spring 2011 Tx summer 2011 IMRT and cispltn fall 2011
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Hi, Shadow I am really glad to hear the the nutrition by mouth is increasing - that is great news. Have the doctors considered Total Parenteral Nutrition (TPN) by IV to help her along as she increases her intake? I am sure you are packing the food that is blenderized with as many nutriants and calories as you can. My husband does breakfast shakes with fruit, oatmeal, milk and whey powder - they are VERY tasty. 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.
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