| Joined: Oct 2010 Posts: 5 Member | OP Member Joined: Oct 2010 Posts: 5 | Hello, I am new to the forum. My life patrner has been diagnosed in May with stage 2 throat cancer and has since undergone and finished his chemotherapy and radiation. We are living in different countries but I have been doing monthly visits. End of August he had his PEG removed and was declared fit for travelling by the doctors. But the visit turned very traumatic as we ended up in hospital 24 hours after arrival. He returned a couple of days later as he wanted to be with his own doctors. Unknowingly he had been infected with Dengue before his coming and it peaked then. He was admitted in ICU for 10 days. It has thrown him back month in his recovery which has affected him emotionally very badly. I myself feel more an more worn out as distance and uncertainty affetcs me very much. | | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Sep 2009 Posts: 229 | Long distance relationships are very hard. I know it's even more emotional for both of you when you're not able to support each other face to face.
Big hugs to you and Welcome to OCF!
Patty 08-10-09 Partial Glossectomy w/suprahyoid neck dissection SCC T1NOMX Stage I | 46 years old
| | | | 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 | His recovery absent anything thing else can take every bit of 2 years with the 1st year being the longest so prepare him and yourself.
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: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | This is all a part of healing as David just told you. This is one disease that plays on it's own field and at it's own pace. It all takes time. I want to wish you the best of luck .
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2010 Posts: 157 | I could not imagine, that has to be extremely tough. I hope it all works into place. You have friends here, I can always relate to someone here, you have come to the right place for sure.
Your Friend,
Nathan
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | Joined: Oct 2010 Posts: 5 Member | OP Member Joined: Oct 2010 Posts: 5 | Dear All,
many thanks for the replies. Felt better than in ages after having talked about it and getting supportive replies. When we first saw the doctors they talked about the treatment schedule and time seemed to be managable. I now understand that it was a blessing to be ignorant then; otherwise the motivation for him would have been compromised. Thanks David for the realistic outlook as it puts all the ups and downs in proportions. As good as it is for me to have a realistic outlook do you think it is a good idea to introduce him to the forum? He is very withdrawn at the moment and talking about his nightmares, something he never had before in his life. | | | | 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 | I'm a believer in that it always helps to talk things out. Keep in mind that most of us suffer from some depression post Tx. The fear of the unknown was cause for mine concern. Ease him to the site. Perhaps leave copies of selected posts lying around for him to read. Encourage him to open up and then ask us.
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Nici - It's great that you are so supportive of your partner and I know it must be difficult to do so at a distance. When I first came to this forum as a caregiver, my son was very depressed and when I suggested he come and post as well, he felt he just couldn't do it. I think he was afraid of getting more depressed. He did register on the forum after a while but only posted a very few times. What really helped him was when I printed out copies of very positive suggestions and especially when he could see Davidcpa's comments on his experiences which were very close to his own. Maybe you could copy some positive posts and send them to your partner to read whenever the mood was right? Does he have family or friends close by that could offer support in between the times when you are able to be with him? Everyone is different, of course and introducing him to this forum may be very well received and a great source of comfort and inspiration to him, but if he doesn't seem ready yet, you can still help him by just being here yourself and telling him about the great support you are getting.
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: Jun 2009 Posts: 440 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2009 Posts: 440 | Welcome to OCF!
Recovery varies from person to person, but I think having him come and visit would be beneficial for him. The people on here are very supportive and it's nice to be able to relate to others that have been there and done that.
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0 Elizabeth, 33, mother of 3 girls (4,7, &8yrs old) 3 rds of chemo(Carbo/Taxol) Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube. 30 rds of rads with weekly cisplatin SCANS ALL CLEAR! OCF Regional Coordinator of San Antonio Walk
| | | | Joined: Oct 2010 Posts: 5 Member | OP Member Joined: Oct 2010 Posts: 5 | Many thanks for all th replies. Will be flying off tomorrow again to see him. Have talked about the support group and he said he would like to have a look with me.Yesterday's doctors appointment was cancelled and I suggested to postpone now to Thursday when I can accompany him, he sounded happy about that. Would like to share some more about his condition: He finished chemo and radiation mid July and had his PEG removed end of August a few days before he came for the visit. Dengue got him around this time and in the first week of September he was admitted in ICU back in Delhi. During his stay he also got pneumonia, which has been treated since with various antibiotics but patch on lungs still there. Mid September PEG was reinserted as doctors advised not to take anything orally as apparently swallowed water got most of the time in the wrong pipe and ended up in the lungs. Doctors have given him the ok to start taking in things orally about 1 1/2 weeks ago. His problem now is that he has so much mucus in his mouth - has to spit it out every 5-10 minutes - that he finds it impossible to eat or drink anythink as it "flows with the all the other stuff around ". Anyone who has or had the same problem and any suggestions what might help? Still thinking of bringing some food items - apple sauce, canned asparagus etc - which he was able to swallow before. Nici | | |
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