| | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | When I think of the people who helped me through the caregiver journey, you all come to mind.
A year ago this weekend... I got the news from our hospice aid that she heard the dreaded 'rattle' and that time was close... Tuesday will be a year since Matt passed. The emotions are all just as raw, just as painful... only a little bit deeper under the surface. I suppose time just adds to the layers, but it doesn't seem to go away.
And I 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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Hi Christine, I followed Matts and your story closely. What an inspirational caregiver you were. What a courageous woman you are too.
I hope that life can once again become joyous for you and your family.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | So glad that you check in from time to time. I know this coming week will be very hard. Sending hugs and strength.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Jan 2011 Posts: 123 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2011 Posts: 123 | I felt a sense of relief after getting to the one year anniversary - no more firsts! Of course there will still be firsts with our daughter but no more major holidays, etc. A year ago you never imagined you would get through but you have and will continue to with Matt's help from above. I am sure he is proud of you!
Jill..CG to Ken, age 43,mom of 1yr old girl.
DIAG:12/9/10 SCC BOT T4N0M0 HPV+
START:1/3/11 IMRT dailyX35 and 7 chemo
END:2/23/11 PEG IN:1/15/11 Out:4/26/11
CT/MRI 4/25/11-marked improvement CT 6/11 new spots
BX 6/23-cancer present
Total Glossectomy sched 7/20/11
7/19/11 Ken's suffering ended
| | | | | Joined: May 2012 Posts: 18 Member | | Member
Joined: May 2012 Posts: 18 | i am going through all my firsts and every one is difficult, trying to put my life back together without my husband joel who passed away in july 2012. try staying busy and know he would want me to pull myself up and keep on going, that is the voice inside my head when i am feeling down, and surrounding myself with family and friends helps.my heart goes out to you all who are struggling the same as i am.
CG to Joel 1st tumor flr of mouth 1998, 38 rad trmts 2nd tumor back of mouth/throat, rad neck, part remvl of jaw, soft palate rmvl, no chemo or rad, has a peg tube since dec 2011.Frmr smkr 25yrs ago, drinker, worked in HVAC indus 35yrs. 3rd dx on 6/20/12, hospice6/29/12, died July 17, 2012
| | | | | 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 |
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
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Love you too Christine. So glad we can follow each other on FB. Will be thinking about you these next few days...a little more than usual.
Blessings my sister!!
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Hi, Christine.
I'm sorry I'm late in reading this thread. I can hardly believe that it has been just over a year after Matt's passing. I think of you often.
Please keep coming back when you feel you are able.
I hope each day brings some peace, joy, and comfort.
Love,
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: 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 | My heart goes out to you all. It is excruciating to lose someone you love. hugs to each and everyone of you.
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: Jun 2010 Posts: 58 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2010 Posts: 58 | Christine, I think of you often as Matt passed away just after my John. Our journeys were so similar. I do come back here sporadically but it does make it hard, remembering everything we went through, and reading the others posts. All I can say is I continue to take one day at a time, as John would want. You no doubt have learned to do the many things Matt would take care of. You put one foot in front of the other and go on each day. All those 'firsts' will happen and you WILL endure them. Hug your family and be the strong woman you are deep down. There are many of us that are walking this path right alongside you.
Peace and love
Bonnie
CG to husb John, 57, love of my life for 35 yrs.
Dx 2/10, T2N2cMx, SCC BOT & lymph nodes.
Non smoker. Biopsy HPV+.
No surgery - IMRT 35X + 7 chemos cleared BOT
9/10-mets to lungs.
2 rounds chemo, last one trial drug which did not work.
Lost the battle, but walking in Glory 9/7/11.
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