| | Joined: Nov 2013 Posts: 29 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Nov 2013 Posts: 29 | Hello fellow supporters,
I'm joining this support group to better understand what I can ( and should not ) do to encourage and support the love of my life who was diagnosed with SCC stage 1 in October after a negative biopsy in June.
He's scheduled for a second opinion.
Ideas welcome.
Patty
-the calm before the storm
Patty / husband Dx with Stage 1 SCC
November '12, BOT ulcer
June '13, first biopsy-negative.
October '13, second biopsy-positive
November '13, second opinion at CCC, T1
December '13, partial glossectomy.
September '14, biopsy on lymph nodes, 1 tested positive.
October '14, right side neck dissection. 14 nods out, with only one affected.
November '14, T1N1M0 radiation in the recommended by oncologist
December '14, radiation treatment
| | | | | 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 | Patty welcome to OCF. What a kind and thoughtful friend you are!
Best thing you can do is to be there when they need you. Offer to help by attending doctor appointments with them as an extra set of ears and to take notes. Offer to drive them if they do radiation treatments. Tell them when the time comes you will be happy to help in any way you can.... then do it. When someone becomes a cancer patient, sometimes some friends disappear until the patient is well again. This happens with even some very close friends and relatives. Your friend is fortunate to have you!
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | How nice of you to be here and so supportive! You will find lots of different ideas here - one that comes to mind is that sometimes the patient/survivor hesitates to ask for specific things that they would like to have or have done and what you can do is try to see where the needs are and offer them several choices to pick from. Or you can make a list of things that you would be available for and let them choose. When my son was in Tx, lots of friends would ask what they could do and he always hesitated because he didn't want to burden them, but when he finally did ask, he found that they were only too eager to help.
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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Hello PattyElle - welcome to the family. It's a big one and has a lot of caregiver members just like you.
You sound like you already have it pretty well figured out. But, sometimes we patients can be a little fickle and that can put stress on a caregiver. If that happens, that's when the suggestions from this group will be most valuable.
Take care, stay strong, the love of your life is lucky to have you.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: Nov 2013 Posts: 29 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Nov 2013 Posts: 29 | Thank you all for your valuable ideas.
My immediate response to the 'news' was to hover and manage, but I realize I need to let my hubby communicate his needs which at the time are none.
He's not 'going there' much, and I'm afraid to ask him anything that is not absolutely necessary regarding the elephant in the room. Prayer helps.
I like the idea of the second set of ears going to doctors' appointments, and the list idea.
Thanks again!
Patty
Patty / husband Dx with Stage 1 SCC
November '12, BOT ulcer
June '13, first biopsy-negative.
October '13, second biopsy-positive
November '13, second opinion at CCC, T1
December '13, partial glossectomy.
September '14, biopsy on lymph nodes, 1 tested positive.
October '14, right side neck dissection. 14 nods out, with only one affected.
November '14, T1N1M0 radiation in the recommended by oncologist
December '14, radiation treatment
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Patty, it sounds like you and your hubby have already taken very positive steps - you've had the biopsy, scheduled a second opinion, and the first opinion showed that this was caught in a very early stage which means you have every reason to expect a very successful outcome! Plus, you found this great place to be! When my son was in Tx, my daughter and a nurse friend of mine came with me to appointments and it really helped us to remember what was said and think about other questions. Think about You, too - Try to keep busy so you can crowd out any negative thoughts and keep calm. Stay with us and let us know what happens with the 2nd opinion.
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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Patty - I'm not one to talk about death... the potential of etc... I am a very positive person for the most part. You do have to talk. Assurances help if you are scared. Do share some of the info you find here. Particularly point out that there are a lot of people here who've been through it and are doing well. There is a lot of info here that will give you a solid idea of what to expect and what is the norm with treatment for his specific cancer. Do share - if you can - the type and location of his cancer. That way people who have had a similar case can share with you their experience.
The second opinion is important, hopefully it is at a CCC - you need to be somewhere that does cancer all the time - they are generally the most innovative and offer the team approach.
Do hurry with it though. With this cancer time is of the absolute most importance. Don't rush but do not wait crazy amounts of time either...
welcome... and good luck.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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