| | Joined: Jun 2013 Posts: 49 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jun 2013 Posts: 49 | The love of my life and me.
How in the world did we end up here?
But I am grateful for this safe place and the hope and encouragement I "see" coming from you folks.
Richard (landscaper/surfer) Barbara (his helpmate and worrier)
65 yr old male in great health other than C. 5/1/13 lump discovered, 5/15 Biopsy, 5/29 PET/CAT, Diag: SCC HPV+ rt tonsil, 1 node, Stage III T1-2 N1, 6/10 PEG, 06/17 Chemo, 6/24 Radiation, 7/6 100% PEG, 8/14 Done with treatment, 11/6 follow-up PET, 11/8 NED, 11/13 PEG removed!
| | | | | Joined: Jun 2013 Posts: 49 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2013 Posts: 49 | It seems like eons ago when the lump was discovered. I amazes me that this journey we are on, has only been a whirlwind journey of two months.
How can a small lump disrupt and change things up so much? Our new topysy-turvy normal is taking quite a bit for both of us to get used to.
Richard has completed his second week of radiation yesterday. This Monday, his chemo is over half way done.
Today is the first day of weakness (feeling unable to do) for Richard. He is a "doer", living his life in the dirt (landscaping) and in the water (surfing is his passion). Now he is temporarily unable to do either. I have to focus on the temporary part of this and encourage him to do so, also.
He has a PEG tube installed, but up to today, has not used it. Today may be the start - he is unable/does not feel like eating.
Praying that this "phase" will quickly pass.
Barbara (Richard's helpmate and "nag")
65 yr old male in great health other than C. 5/1/13 lump discovered, 5/15 Biopsy, 5/29 PET/CAT, Diag: SCC HPV+ rt tonsil, 1 node, Stage III T1-2 N1, 6/10 PEG, 06/17 Chemo, 6/24 Radiation, 7/6 100% PEG, 8/14 Done with treatment, 11/6 follow-up PET, 11/8 NED, 11/13 PEG removed!
| | | | | Joined: Jul 2013 Posts: 22 Member | | Member
Joined: Jul 2013 Posts: 22 | I am sorry to hear about the situation. I am new to all of this myself, but I find what gets me through every day is reminding myself that once the "hard part" is over, I've given myself a chance to live. The big C, as horrible as it is, has really opened my eyes to what I want out of life and has provided such a clarity to my thoughts. I hope for the best, for both of you, and you will be in my thoughts. You have a great community here to provide plenty of support.
Josh, 24, don't smoke/drink
5/29/13 Biopsy
6/3/13 DX stage 3 HPV- SCC at BOT
6/14/13 Hemiglossectomy, neck dissection, second surgery to add stitches
6/21/13 PEG
6/23/13 Incision opened to drain infection
6/26/13 Discharged from hospital
7/22/13 IMRT starts
| | | | | 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 | Hello Barbara, I am sorry you have had to join us. You will find amazing support and advice here. Yes, it sure is quite a shock to find yourself on this journey. It is a hell of a roller coaster . Take it 1 day at a time and always be positive and encouraging. You both will get through this
Try and encourage Richard to keep swallowing. It is ok to use the PEG for most of his nutrition if you have to, but he must swallow a little each day. This is too keep those muscles working and so that after this is all over he can return to eating normally.
I just want to tell you both that life will return to a " normal " for you both eventually - with a little bit of time. There is plenty of quality living still to do and to be had for you both.
Come here often, either for advice or to vent. We will help you through this.
Take care,
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 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Barbara, welcome to the family. Richard's situation and mine were quite similar even if the treatment is slightly different. There are lots of people here who can help you with any questions, no matter how trivial you may think they are. So don't be shy about asking, venting, etc.
My thoughts are with you both.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jun 2013 Posts: 49 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2013 Posts: 49 | Thank you so much for "hearing" me!
On Saturday, Richard started using the PEG. Between the two of us, we finally figured it out. We did receive instructions a number of weeks ago, but it would have been better if we were taught, live and in person (I am a "show-me" kind of gal).
He seems to have more energy in the morning, but is wiped out by noon.
Also, he complained about a sore in the left side of his throat. We heard that honey was a soother for this type of thing and sure enough, "a spoonful of honey" worked wonders.
Today, is a double-up day, chemo and radiation. Almost at the halfway point of treatment. A day at a time.....
Richard & Barbara
65 yr old male in great health other than C. 5/1/13 lump discovered, 5/15 Biopsy, 5/29 PET/CAT, Diag: SCC HPV+ rt tonsil, 1 node, Stage III T1-2 N1, 6/10 PEG, 06/17 Chemo, 6/24 Radiation, 7/6 100% PEG, 8/14 Done with treatment, 11/6 follow-up PET, 11/8 NED, 11/13 PEG removed!
| | | | | Joined: Jul 2013 Posts: 22 Member | | Member
Joined: Jul 2013 Posts: 22 | I haven't even started my radiation yet and I end up getting pretty wiped out around 3-4 pm myself. I think it's just the body still working overtime to heal up, and that takes much more energy than I thought it would. I have never slept so much in my life! It is certainly an adjustment. As for the PEG, did you receive a machine to pump it in or were you told to do it bolus? If it's bolus it's pretty straight forward, you can either directly push it in with the syringe, or take the plunger out and keep pouring everything in and keep it elevated and gravity will do the work. If it's a machine, I unfortunately have no idea how to use that. You are both in my thoughts.
Josh
Josh, 24, don't smoke/drink
5/29/13 Biopsy
6/3/13 DX stage 3 HPV- SCC at BOT
6/14/13 Hemiglossectomy, neck dissection, second surgery to add stitches
6/21/13 PEG
6/23/13 Incision opened to drain infection
6/26/13 Discharged from hospital
7/22/13 IMRT starts
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Richard and Barbara, welcome. Great that you have each other for support. I would have been lost without my wife/caregiver. Don't forget to take time to do normal everyday things for yourself too. Good luck.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | And with that expended energy "behind the scenes" comes the need for all those calories we preach about.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | 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 | Ask for a prescription to get a feeding pump from a medical supply company. This will help to take in enough by letting the pump run overnight while he is sleeping. just make sure he is propped up on a couple extra pillows or in a recliner while he is doing a feeding.
Every single day he must take in a minimum of 2500 calories and 48 oz of water. Dont skimp thinking it can be made up the next day, tomorrow never comes and it soon turns into a viscous cycle of trying to play catch up. By using the feeding pump, it will help to get enough calories and hydration. Also ask the doc for a prescription to get hydrated in the chemo lab at least 3 times a week. This will also help him to feel much better quickly. Dehydration can be a very bad side effect with malnutrition and end up causing hospitalization which is no fun for anyone.
Hang in there, it will be a long rough road but together you will get thru it. As a caregiver dont forget to take some time just for you too.
Best wishes!!!
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  | | |
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