| Joined: Oct 2017 Posts: 3 Member | OP Member Joined: Oct 2017 Posts: 3 | Hello, I'm very new to the forum. I am a new OC patient. My husband has had a recurrence of stage IV colon cancer. So I've been a constant cancer caregiver for several years now. I'm getting a new perspective being the patient.. My husband's cancer returned August 14th 2017 and I was diagnosed with OC on August 25th. Needless to say I've been a bit overwhelmed. I had a partial glossectomy and right side neck dissection to check lymph node pathology on September 3rd. I had great test results. And I'm home recovering after 5days in the hospital. I'm told mine was "easy"... This bothers me as I feel I'm struggling. My speech is very "lispy". My neck mobility is not what it needs to be, the swelling still prevents me from having a defined jaw.. I'm still on liquid diet. I've tried mashed potatoes but they are too painful to manipulate in my mouth. The skin graft on my tongue is horrendous to see, I don't know what it's supposed to look like. I want to eat real food as I've been craving real food for months as the cancer caused me terrible pain for 6 months prior to diagnosis..... I guess I really needed to vent a bit. Less than a week after being released from the hospital, I have to take my husband to chemotherapy. Cancer has been my life since 2014 and I'm just feeling worn down. Thanks for letting me vent. -Jen | | | | 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 | Welcome to OCF, Jen! Im so very sorry to read about what you and your husband have been thru. I cant imagine how difficult it is to go thru OC while having your husband have cancer at the same time. We're here to listen and help you so feel free to vent. We understand!
I suggest asking at your treatment facility about seeing a speech pathologist or SLP. They can help you do PT to regain your mobility and help you to relearn how to eat again. As far as your neck stiffness goes, that is unfortunately very common among those who have had neck dissections. Have you seen a physical therapist yet? The sooner you are able to start working with the therapists the easier it will be for you to make progress.
Best wishes with your continued recovery. 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: Oct 2017 Posts: 3 Member | OP Member Joined: Oct 2017 Posts: 3 | Thanks Christine, it has been an incredibly humbling experience. I find myself struggling trying not to complain how uncomfortable I am, when my husband has been through such a complicated and difficult treatment compared to what I am having to deal with. I am doing some exercises to help losen up my neck but wow it smarts!! I'm interested in doing PT but was not referred to one just yet. I think I will ask my doc to put that through for me. I appreciate this forum so much, it's a great way to learn and know we're not alone. Many thanks!! ๐ | | | | 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 | Since you are about 6 weeks post surgery, you may want to talk to your doc at your next check up and ask about PT. If your next check up isnt for a while then call and ask about getting the referral if your insurance company requires it. The sooner you get started, the better and quicker you will improve your range of motion and hopefully lessen your pain. After a neck dissection, many have problems with the surgery side with that arm and side of their neck. Its very common for those patients to not be able to lift that arm all the way up or get dressed/undressed as easily as before the surgery. The muscles have been affected (some of us had them cut during surgery) and you will need to relearn how to do things to make the most of what range of motion you have. Best wishes with your continued recovery. PS... I think what you described about your complaints compared to your husbands is similar to survivors guilt. Every single patient has their own ups and downs when they go thru a cancer diagnosis, treatments and recovery. Im sure your situation was no walk in the park. Its not a equal comparison when talking about 2 different types of cancer. In my opinion, its apples to oranges. Every type of cancer is different and has its own list of problems patients will have issues with. Dont downplay what you went thru! Im sure you had your own set of problems, pain and side effects. By complaining about your ailments it helps to get it off your chest. To me its not complaining, its having a discussion about OC. Here at OCF, we understand what you have gone thru and know its no small feat. I think watching someone you love go thru cancer treatments and recovery must be terribly difficult. I have not been a caregiver and probably wouldnt make the best one. Its a thankless job and loaded with stress. We're here to listen if you feel you want to vent. We do understand and we would never compare your experiences to another type of cancer. You're not alone in this anymore! You have discovered an entire online family when you found OCF. 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: Oct 2017 Posts: 3 Member | OP Member Joined: Oct 2017 Posts: 3 | Haha oh my, I've not been on my game lately.. my brain obviously got sucked out with the JP drain๐... I had my surgery on October 3rd, not September. I guess that makes a little bit more sense. I'm sorry for the confusion. | | | | 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 | Ok now I see why you are feeling so lousy. That makes a huge difference!!! Thanks for updating us so we knew Wishing you a speedy recovery!!! 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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