#43562 07-10-2004 10:01 PM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi Betty
You are doing well lady.. it's hard to be bossy when someone is ill.. but you are right it has to be done.. now I will be bossy with you.. do not forget about BETTY.. she need a short break everyday..
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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#43563 07-11-2004 08:46 AM | Joined: Jun 2004 Posts: 26 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2004 Posts: 26 | Hello all my dear friends,
Well, we are back in the hospital. Her port continued to bother her yesterday, hot to the touch, swollen, but so hard to tell because she is swollen all over her head and neck. I clearly saw drainage from her port. I called the hospital at 9:30pm telling them what I thought, Barbara kept minimizing it ... they said bring her in. By 1:30 am she was admitted with an infection in the port, and they are removing it today.
Taking care of me ... UGH. But yes, my mother has worried about the same thing. Today to take care of me, I checked permanently into a hotel closer to the hospital, no longer staying in a cabin up behind her house, and having to deal with some difficult husband issues she is having (that's a whole nother post !!) and have the comforts I need to stay well myself and be a good caretaker.
It was necessary.
I don't know how long she will be in the hospital, but am on my way up now, after getting myself all set today, after being at the ER last night getting her admitted until 1:30am.
I'm refreshed and ready to rock and roll again !!
Thank you all.
Lots of love and hugs !!
Betty
Caregiver to Sister, Woodstock, VT - 3/4 tongue removed & reconstructed w/forearm 5/21/04, some in the lymph nodes, neck dissection, brachy radiation in the hospital and now going through 2nd round radiation and to add cysplatin chemo. Stage II-III.
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#43564 07-11-2004 08:53 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi Betty
Glad you didn't take offence at me being bossy, my Mom is in hospital, probable stroke and I've been bossing her today.. What will I do when everyone is bossing me about.. if you read any of my old posts.. my solution to most things is a glass of red wine.. so cheers Betty..
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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#43565 07-11-2004 03:09 PM | Joined: Jun 2004 Posts: 26 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2004 Posts: 26 | Yes Helen,
I myself usually prefer a good stiff bourbon and coke at night while I am here ... however I've been getting home to late at night and to tired to even mix a drink.
Phewwwwwwww, this is hard work !
But seeing her better cared for because of all my perserverence and assertiveness in assuring she is getting what she needs keeps us both happy.
Instead of the drink tonight, I bought myself some special bath salts and oils for my long hot tub tonight ...
Warm thoughts, sweet dreams.
Betty
Caregiver to Sister, Woodstock, VT - 3/4 tongue removed & reconstructed w/forearm 5/21/04, some in the lymph nodes, neck dissection, brachy radiation in the hospital and now going through 2nd round radiation and to add cysplatin chemo. Stage II-III.
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#43566 07-12-2004 09:20 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 | Betty, I am sorry you have had a couple of issues to deal with in addition to the normal trials and tribulations of being a caregiver. I was wondering how the stay in Woodstock went over the weekend. I hope you had a nice sip of whatever thrills you and you thoroughly enjoyed your warm bath. You are doing an amazing job and your sister is so fortunate to have you by her side, as I am sure she knows  . If there was ever a time to be bossy, it would be pushing for nutrition and regular hydration. Lack of one or both would exagerate any side effects and hinder healing. 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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#43567 07-12-2004 11:45 PM | Joined: Apr 2004 Posts: 146 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 146 | Hi Betty,
I'm glad to see you're taking time out for yourself. That's so important not only for you, but for your sister. Good to see that you're also being tough as someone usually has to be. But you sound like such a tender and caring person that I know your sister appreciates your being able to be both tough and loving to her at the same time. Keep up the good work and I hope your sister continues to heal. My thoughts are with you both.
Nancy
Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
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