| | Joined: Apr 2016 Posts: 75 Likes: 2 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Apr 2016 Posts: 75 Likes: 2 | Hi sometimes I get so sad reading these posts, both are informative and sad to me. It seems like the cancer keeps coming back, on me twice, and now post radiation problems, so living is hard and dying is very hard with this disease. I try to take one day at a time and do alternative healing like reiki and acupressure but hard not to worry about what the future looks life. thanks for listening, Michele
SCC 2005 floor of mouth and neck disection
SCC 2009 partial rt tongue RAD
PEG 2009
20 HBO treatments following surgery of three teeth and 10 more HBO to follow
2015 Diced food diet due to weak muscles long term effects of radiation
2018 Radiation Fibrosis of the jaw and neck, vocal cord dysfunction
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Thank you for sharing your thoughts, especially during difficult times. Having dealt with cancer for nearly a decade you have earned the right to feel bummed now and then.
I'm just over a year post and things are going really well and virtually no lingering side effects. Each day I try to live as fully as I can and be thankful for one more great healthy and pain free day.
With recurrence and ongoing side effects, daily life must be more challenging and demanding. But your life is richer each day with friends and family and seeing the beauty of nature.
All one can really do is live for today as there is no guarantee of tomorrow. There are many ways to feel bummed about tomorrow. You have have everything today and be bummed about losing it tomorrow. You can have nothing today and worry about having nothing tomorrow. OR You can have hope tomorrow brings another great day or is better than today.
Undoubtedly, this is a 100% mental game so when thoughts try to derail your happy state, go kick it to the curb and be happy for now.
Best,
Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Oct 2008 Posts: 246 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2008 Posts: 246 Likes: 1 | Michele, I am so sorry to hear about your continuing problems. I have sent you a PM.
It's a horrible disease with brutal side effects. My husband stays calm by being thankful for the 6 years he has lived since his treatment ended. This is harder to do when you are in pain. Do you have help? Are counselors available on your treatment team?
Lottie
CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | It is very hard and sometimes the hardship of others is almost too much to bear. My current thing is to feel overwhelming sympathy for people who are much younger than me or much sadder than me. I wish I had a magic wand.
On the other hand there are lots of people here who get through and get by and are inspiring. We're not alone.
I'm reading up on "mindfulness" as an antidote to worry and attending a few courses.
I wish you all the best for your dental treatment.
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | 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 | Michele, keep in mind that there are close to 10,000 members here and you are seeing only a small number. Many came and went since I've been here and are doing very well. The bad radiation things I've experienced are really a pretty small number of people. I was told around one-half on one percent.
You can be down. I feel confident saying we've all been there, some of us many times. It's good to get that out, too.
I did acupuncture during treatment and have had a lot of accupressure since treatment. You just find a way to get through it all.m try and keep goals of things you want to accomplish in front of you always. It's easier to keep busy looking ahead than to look back. Some days I just live in the moment and that's all I can do.
Hang in there.
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: Apr 2016 Posts: 75 Likes: 2 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Apr 2016 Posts: 75 Likes: 2 | Thank you so much for all your kind words, I will try and work on being thankful for today and not worry about tomorrow and yes a lot of people have come and gone here and I am thankful and lucky to still be alive, thanks too all. Michele
SCC 2005 floor of mouth and neck disection
SCC 2009 partial rt tongue RAD
PEG 2009
20 HBO treatments following surgery of three teeth and 10 more HBO to follow
2015 Diced food diet due to weak muscles long term effects of radiation
2018 Radiation Fibrosis of the jaw and neck, vocal cord dysfunction
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Sometimes this disease seems almost chronic in some people. Glad you are doing the reiki etc. There was a few years gap in your cancer but it could simply be very slow moving (most is hyper aggressive - but some seems almost creeping) I know my tumor existed for quite a while prior to treatment - not sure if this is related to an amazing immune system or what but I think it has some relevance. Hugs and do try to enjoy life none of us live with guarantees - even non cancer people 
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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