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TomT Offline OP
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Don't know where something like this belongs but would like some input on a few things. First, my wife has been given a time frame of something like a year, we will continue to fight that battle with treatment and everything else we can throw at it but I also want to make sure that we have things in order. We took a little mini second honeymoon a few weeks ago and it was the first time she mentioned life after her when mentioning that she thought one of her rings should be given to a grand niece. I was a little caught off guard and not prepared to discuss any of the things that I figure we will discuss somewhere down the line. As a caregiver, when did you discuss the tough things like where would you like to be buried, what type of service, who should officiate, cremation vs internment, etc. Although we have worshipped as Lutherans since we have been married, she is still Catholic. Are there Catholic beliefs that would require a Catholic burial or having a priest officiate, perform last rites? In this day and age is a will necessary if we have been married for 24 years and I think everything is in both our names?



Tom-CG to wife, Pam 46@dx
Stage IV Tongue Cancer T2N2C
Dx 6/08, Surgery 7/08, 3 nodes positive
9/08 33IMRT/7Carbo/Taxol
4/09 node biopsy positive, mets to lungs/stomach
5/09 Cisplatin or Cis/Alimta study
6/09 Cis/Taxotere
9/09 Taxotere
1/10 Xeloda
3/10 Cetuximab weekly
6/29/10 lost battle
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A will isn't just "necessary", in my view it is mandatory. I was a banker for 33 years, and trust me, there are few things worse than dealing with someone who died without said will.

One day about 6 months ago, I sat down and wrote out a list of what personal items I wanted to give away and to whom. I went over it with my husband and I EXPECT him to honour it - even though it is not part of my formal will.

I would encourage you to sit down and in a calm and matter of fact manner make this type of list with her. I can't tell you how much better I felt once the list was done. Sounds odd, maybe, but somehow you rest easier knowing your ducks are lined up.

I would also HIGHLY encourage you to explore with your wife any items that maybe she has always wanted to do but never has. I would also refer you both to a book titled "Chasing Daylight". It is the story of a CEO who was told he had 3 months or so to live and how he proceeded to spend that time. I have read it a couple of times. It is an awakening about how each of us spends our days and about how - especially with limited time - we need to spend it carefully.

I know if I was told I had less than a year I would certainly be on the next plane out of here to fulfill some travel dreams of mine.

Donna

Don't be afraid to discuss these things with her - she obviously wants to talk about it. I think it only frustrates the "patient" when others will not talk about realities. But, just my humble opinion.


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Hi Tom
making a will was something rob had never done,and never really thought about.The day he got his terminal diagnosis,he had me ring a solicitor and she came to the house.He dictated his wishes to her and i am so glad he did it straight away,because a few days later his voice had all but disappeared and he was zoned out with morphine pyschosis,and they wouldn't have been able to do it .When he went into the hospice and he was sorted out with meds etc,we talked for many hours about his funeral,the music he wanted,where he wanted to be buried,what he wanted every one to wear,the wake,his personal belongings,what treatment he wanted,what measures he wanted regarding resucitation and best of all he opened his heart about his feelings.it was surreal really,that he could be so matter of fact about it all,but when he died,it made one part of my life so easy,because all i had to do was follow his wishes.

For people who have more time than we did,i think they are happy to get these things done and out of the way,and then they can concentrate on making the most of those weeks/months they have left together.
I am sure that for most people who have been where you are its one of those things hard as it may seem,thats better done sooner than later.

love liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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My husband was never one to talk about this stuff but when his scans started going from bad to worse I forced the issue. We went and had BOTH our will made out which is something we should have done when the kids were little. At the same time we had living wills and powers of attorney drawn up as well. These have to be done if Hospice will be involved at some point. It made things so much easier when the time came.

As for final arrangements such as burial and funeral, I brought these up in a casual way. My husband was spritiual but not religious as he had been divorced and was concidered ex-communicated from the RC church. I really had no idea what he wanted and I'm glad I asked. He wanted to have a full funeral service and to be buried in the same Catholic cememtary as his grandparents. I went and purchased a plot about 6 months before he passed. I also pre arranged the wake about 2 weeks prior. A friend of mine who had lost her young husband advised me to do this ahead of time and it was good advice. You will be so scattered when the time comes and knowing thses arrangements have already been made is helpful.

Please feel free to ask me any questions in this regard. I found it to be comforting in a strange way to be able to talk about this as I am a planner and this disease really has no set plan, as we all know. Best wishes for peace for you and your wife.


cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
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Preparing a will can certainly be dictated by the amount of assets she owns outright. Assets already held jointly pass directly to the joint survivor. You can make things easier now if you get added to all bank accounts, credit cards and any safe deposit boxes. Quick Claim Deeds can also be used as a cheap quick method to transfer ownership depending upon your circumstances.Some states, including Fl allow a handwritten will, called a Holographic Will. It's intended for simple wills. Check your state and also check the Rules as they must be strictly adhered to make it valid.

Now is the time to start to pull out all insurance papers, identify all belongings, understand all final wishes, etc. I wrote my wife a "letter" telling her everything I think she would need to know if I were to quickly pass away. I did this several years before my cancer. Something like this, including any testamentary wishes needs to be reviewed periodically to make sure it's current.

Depending upon your lifestyle complexity a lawyer who specializes in trusts, wills and estates is always a safe bet. Also a CPA can be a must addition to the Team.


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.
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It's not just a will you need. You also must get Power of attorney and living wills. Also make certain all bank accounts, CDs, 401ks, insurance policies at work etc. have a proper beneficiary. Keep small bequests like jewerly out of the will unless you expect a challenge or they will have to be appraised and tax paid on them. Have her make a list of those type of bequests and give it to you.

Really folks, anyone of us could get sick or run over by a truck anytime. Don't laugh, I almost was. So we all should have these documents now, not wait until we get a dire diagnosis.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Eileen is absolutely correct. ALL of us should have a properly and legally prepared will, at the very least. Life is fragile and it's all too easy to die an accidental death, let alone cancer. Avoiding probate is key because the court will take 15% off of the top of the total value of the estate.

If real estate is involved then a revocable trust is the way to go. It will include the trust, will, powers of attorney and advanced directives. A paralegal can typically prepare it for far less money than an attorney. It can be easily updated. Power of attorney, in a will, is typically only applicable if the individual has become incapacitated or dies. Bank accounts need to be done individually at the branch where your signature card is on file. You both need to be present to do this.

You can specify every detail of your estate and it's disposition. It can save a lot of family pain and infighting later.

If the trustee dies, it's easy to transfer the estate to the sucessor trustee yourself, even though attornies will want to charge up to a $1,000 for doing it. (I went to the county and transfered my fathers estate to me for a whopping $60 in paralegal fees and a $50.00 county deed of trust transfer.)

My wife and I have also discussed our last wishes, burial, cremation, memorial, celebration or funeral arrangements. It sounds gruesome but it is a discussion that you only have to have once and it is a relief to get it over and done with.


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)
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TomT Offline OP
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Thank you all for the input. I think I just find it difficult to do, that it is easier to ignore. By talking about it and making a will is almost like admitting that barring a miracle, this is going to happen. I did mention to her tonight that we should sit down and make out our wills and I can probably lead that into a discussion of everything else.

Thanks again, you all have some good advice as usual.


Tom-CG to wife, Pam 46@dx
Stage IV Tongue Cancer T2N2C
Dx 6/08, Surgery 7/08, 3 nodes positive
9/08 33IMRT/7Carbo/Taxol
4/09 node biopsy positive, mets to lungs/stomach
5/09 Cisplatin or Cis/Alimta study
6/09 Cis/Taxotere
9/09 Taxotere
1/10 Xeloda
3/10 Cetuximab weekly
6/29/10 lost battle
Joined: Aug 2008
Posts: 96
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Hi Tom,
First of all, I am sorry that you are facing losing your wife of 24 years. My husband and I would have had our 25th in November if he had lived. I don't have the answers to all of your questions, but I can tell you that you do need to sit down and iron all of this out now! When Ron got his last diagnosis in April, I think that is when he finally really accepted that he would not be cured. So we went to the lawyer and had his will redone, which involved a lot since he was a farmer and his nephews are now buying his shares in the corporation. This will give me a monthly income for 20 years (or transfer to our kids when I die). Just a week before he died he let me know that he wanted to be cremated and did not want an open casket for a viewing. One thing I will say is that if your wife starts to tell you who she wants to have certain things,please listen and write it down. My husband one day started to tell me that he wanted our daughter to have a certain gun of his (he was well armed!), but just the thought made me cry and I said that we had to do that later. Well, we never did get around to it again. He passed away quite a bit sooner than any of us expected. So I feel a bit of guilt about that and hope that he would have been okay with the things I did give away, like his Harleys and guns to certain family members. It is not a pleasant thought or topic, but it must be done. Also, you must have a Power of Attorney for Health Care or your wife should have a Living Will. This is very important. We also had an evening of signing car titles and motorcycle titles. Again, my sympathies to you.
Lori

Last edited by lorileona; 07-12-2009 12:26 PM. Reason: correction

Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
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Hi, Tom,

I am so sorry for what you are facing. I can imagine how difficult it is to have discussions about wills, end of life issues and so on when you are actually facing this. My sister-in-law died of cancer (in her 40's) and my brother asked her about burial versus cremation the day before she died which was really difficult for him but they hadn't discussed any of these things for the very reasons you've mentioned. My sister-in-law was raised Catholic but joined the Presbyterian Church when she married. However, Catholicism was very important to her mother and for these reasons, the service and burial incorporated both religions. My sister-in-law (another one) is a Catholic parish nurse and she can give last rites (don't recall her "title" which allows her to do this as I am not Catholic) and does the most beautiful end of life ceremony involving family and friends with the individual who is passing. If you're interested in learning more, please contact me as she lives in Minnesota as do you and she might be able to help you locate the Parish nurse for your area. Most of her ministery is with end of life issues and she is very helpful to family members as well as the individual who is facing death. She helps family members talk about the very issues you are raising.

My thoughts 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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