| | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | and perhaps inevitable...
multiple lung masses, largest two being 5cm diameter, one in each. 93%pulse ox still, but he's feeling the decreased space.
Some node involvement in the chest now. Liver involved. Rib cage. Pelvis, surrounding soft tissue, and hip.
Radiation on pelvis/hip to be considered next week. Pain is too great for him to get around the house much. Doc thinks this will alleviate that pain enough to make quality of life better for the three to six months he may have left.
As I've read, and well know, we cannot "pre-grieve" although we try. How I feel hit by a bus, I just don't know... We have been lucky to stretch this into the three years that we've had together since diagnosis. He's taking it so much better than I. He said he felt like 9 months last week.
I start my new job training Monday morning. I am very tempted to call and see if I can postpone a few months, but what the heck would I do? Something to occupy my mind, just might be good.
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | 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 | Im so sorry the results werent better news. I guess you are right that you cant pre-grieve. Nothing can prepare you for what will eventually come. Times like this make it harder to be the caregiver.
A new job would be a great way to keep you busy. Its a positive thing that will be helpful to you. Think of it as your own little escape. Hope you enjoy your new venture.
Best wishes with everything you both are facing.
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: 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 | Hugs - I'm so sorry! I would maybe see if you can do he work part time? Take care - god bless - and saying prayers!
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
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | I'm so sorry that you've heard more bad news. I feel that we grieve throughout this whole process. We grieve each loss, poor test result, loss of function, loss of our former lives. It's not to say that the grieving you will experience in the end of life is happening now. Like Christine said, nothing can really prepare you for what is to come.
As far as your job, perhaps you can try it out and see how you handle things. You probably want to give your manager or HR rep a head's up as to what is going on in your life outside of work. Hopefully, they will be nothing other than understanding.
I wish peace and comfort to you both in the coming times. Please don't hesitate to reach out when you need a hand.
xoxo,
Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | | Joined: May 2010 Posts: 135 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2010 Posts: 135 | Christine, I am so sorry for the news you received. I think about you and Matt often and will surely keep you in my prayers.
You mentioned pre grieving and yes, there is such a thing. It's call anticipatory grief.... there are numerous psychiatric articles and hospice articles on that process. It may be helpful to know that what you are experiencing is normal. Caregivers have two "patients" the terminally ill and themselves. Caring for yourself during this time is often difficult as guilt is likely to try to rear it's ugly head.
I hope you and Matt are able to enjoy love and peace and you make this journey together. And please be easy on yourself... you've been through so much.
Love to you.
Dodie
Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | Thank you for the much needed support. I am blessed knowing that you all will always be here for me when I need you most.
I am looking forward to starting work tomorrow. I haven't worked since Nov. 16th.
I have been surprised these last to days at how well Matt was handling everything. Then I realized that he's been aware this was coming and adjusting to it all along, hence the crazy moods and bizarre behavior outbreaks... makes perfect sense to me now, though it sure didn't at the time.
Love you all.
Christine
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2010 Posts: 531 | So sorry Christine, but he is a fighter as he has done so for the past months. I only wait for the same I hate to say it to happen to me, the way Ron has been and gone thru just how many times can he make it before his 9 lives are done I always wonder. We are all here for you to vent and please keep us posted, enjoy each day as it comes. Peace and Love to you both
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
| | | | | Joined: Aug 2005 Posts: 307 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2005 Posts: 307 | Dear Christine,
My heart goes out to you and Matt. May you make the most of each moment you have together. I wish I had "pearls of wisdom" to share to comfort you, but just know a lot of people here care so much about you two. You are both in my prayers.
Love,
Shelley
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | Work has been going well, though I feel somewhat guilty for being unavailable. He's encouraged the opportunity though.
We are awaiting record transfers from the radiation clinic so that the new docs can figure out how much has been done to the hip/pelvis already. He's had two rounds of radiation to that area already.
I spoke with hospice Monday night to find out exactly what they can do to help with the pain. They said they'd admit him to hospital while they experimented with the pain meds then discharge him to home once they found something that worked.
Of course the nursing home option is there, as well as the home visits twice a week...
I am sure we'll go thru all of that eventually, but for now.. I just want his pain to ease up.
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Jun 2011 Posts: 188 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2011 Posts: 188 | CM, I do not know what Rxs Matt's had, but I do feel your pain as we are in a very similar situation. The Cap Lap trial http://clinicaltrials.gov/ct2/show/NCT01044433 may interest you. My Dad joined it in December and I can tell you it is buying good quality time and is working for now.
Caco
CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
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