#38159 01-30-2005 09:47 AM | Joined: Jan 2005 Posts: 156 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Jan 2005 Posts: 156 | swati,so sad to hear your sad news, my thoughts and prayers are with you as you struggle inyour hour of need god bless and take care maz | | |
#38160 01-30-2005 10:46 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Swati, I am so sad to hear the news about your father and agree with everything said here about hospice. They were wonderful in taking care of my father and will be there to help you and your children both during and after he is gone. My heart goes out to you at this time.
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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#38161 02-02-2005 10:11 AM | 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 | Swati,
I am so sorry to hear the news about your father. I can not imagine how difficult of a time this is for your entire family.
I vividly remember hearing the doctor tell me my mother had 3-4 weeks to live. She had battled ovarian cancer for about a year and through both surgeries, they removed about 40 lbs of tumors from her each time. The last surgery they also did an ileostomy. I remember going to Virginia and putting her on the plane to come to my home in Dallas to live the remainder of her life. At this point she had multiple brain tumors also. I just knew there had to be some options available but she insisted no more treatment. We went to the medical school here that also had trained her doctor in Virginia. He personally called and got her into the same program he had participated in.
Through the intial visits to get her meds sorted out and such, we reached a point that they believed she had a week or two left UNLESS she would let them treat the brain tumors with radiation. She told me on the way to the doctor that she would not agree to this under any circumstances. This was the longest ride in my life and my mind was racing. When the doctor looked her in the eye and said she would live a few more days without the radation, she jumped up and said..."Well then, what are we waiting for?". I was shocked but we started in 3 days. She pretty much stayed in bed from the 5th treatment on (7 months later). All in all, she lived about 9 months which was way beyond any expectations anyone had.
My mother was fortunate in that she communicated her wishes. I also remember how special it was the last few days. I only wished she would have agreed to hospice care earlier. Before we could get her moved over to hospice, she passed away. We had home health care and they used mostly their hospice staff to treat her, though, so it worked out fine. We had access to many highly trained and qualified people that helped us process things much easier. The pain management doctor was the greatest, although my mother insisted on minimal pain meds so she could enjoy the rest of her life. During her last month we even took her to the Bahamas because she wanted to see the ocean and we got her a 5th floor ocean view room with a balcony.
I know how tough this must be and I wish I had more advice for you but I don't. I only wish you the best and that you may have the utmost peace and comfort through this unfortunate time. Feel free to email me anytime.
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
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#38162 02-03-2005 07:09 AM | Joined: Apr 2002 Posts: 80 Likes: 1 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Apr 2002 Posts: 80 Likes: 1 | Swati
Not going to tell you what to do, but as some others have stated hospice is a great source. They will help you cope as much as your father. My dad had bladder cancer which keep coming back, I would pray not now, not now Lord I need him now. In 2003 the Dr. told us 6 months, and a very painful 6 months ahead, my prayers changed. I realized I was praying for me, not for what was best for my dad. Don't get me wrong it was pure HELL, but I prayed no more pain plain and simple no more. My prayers were answered, dad pasted 2 months after the Dr. gave us the 6 months. He woke me up 2 days before by taking the his loved ones that had gone on before, it would have freaked me out, but the hospice people had told me this could happen, so we knew some signs to look for. We gathered around him, let him know it was ok, let go we would be ok he had worked so long and so in tune with what he believed we wanted, that he had to hear this before he would let go. It's so-----hard but I would not change a thing. I had stage IV oral cancer and only hope when my time comes I will leave as he did. Hospice is great for many reasons. God bless you and your family, you will be in my prayers
Joan
JOAN
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#38163 02-04-2005 12:57 AM | Joined: Jul 2004 Posts: 7 Member | OP Member Joined: Jul 2004 Posts: 7 | Thank you all for your help, you have all offered some really great advice and insight. We have set up an in-home hospice for my father, because being at home has been really important to him. I must say at first I had my reservations about what hospice exactly is, but they have been nothing but helpful, understand and at our service. I am very very impressed with the hospice care we are getting.
I guess this is all so hard to swallow sometimes because after my father's 2nd treatment in November, his CT and MRI scans were clear.Since dec this has just been a whirlwind. Rosie, I am so sorry to hear about your daughter, my heart goes out to you and your family. Your daughter's experience is actually quite similar to my father's. I think the hardest part is not really knowing what is going on in my father's mind. We have actually tried to talk to him about how feels, I don't even know how to begin the conversation about telling him it is ok to let go. However I know it is something my family will have say sometime soon.
Uptown, I am happy your mother was able to communicate her last wishes I know how important that is. Joan I know what you mean, sometimes I wonder if my hopes and prayers are actually more selfish then for his own good. For example last week my father spiked a fever while he was at the hospital and the dilemma to give him antibiotics arose. I never thought we would actually be contemplating whether or not to give him antibiotics. In the doctors opinion, we were just going to prolong his misery. However, in my heart I could not make the decision to not give it to him. I told the docs to write him up a prescription. I'm not sure if the decision was selfish or not. At the time I could not bring my self to let him go, in a situation where I had to make the decision. At this point I'm not even sure if a situation like that happens again, where he has an infection if we should even try and give him antibiotics or not.
Thank you again, everyone for you insight and hopes and prayers, my family and I really appreciate it. | | |
#38164 02-04-2005 11:08 AM | 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 | Swati,
I am so sorry that you have to deal with so much during a time that is already difficult enough. As odd as it sounds, you will know when it is time to make a different decision than what you have made in the past. Sit by your father's side, hold his hand and just tell him how much you love him and how you will do anything for him, how you wish he didn't have to suffer right now. Tell him that there is nothing wrong with dieing and that any time he is ready to go, you are okay with it. Tell him that selfishly you wish he could stay in this life forever but you understand how this disease has taken such a toll on his body. Once you start, the words (and the tears) will flow freely. You will be processing a lot of your feelings while this conversation is taking place, too.
God bless you and I am truly sorry you are going through this.
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
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#38165 02-04-2005 11:27 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | Swati, My heart goes out to you, my Dad is in hospital at this time, unikely to come home again. (not OC) But my Dad is now becoming more confused than ever now he is not in his own home, he knows who his immediate famiy are but he thinks he's at home, upstairs in bed. Wish I could hold a conversation with him but his short term memory is now so bad that this is impossible. So may we all find the way to deal with this and may we all find a special peace.. Sunshine...love and hugs Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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