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recap:  I spent 9 hours in surgery last Thursday and everything was fine for the day. Friday morning blood in tongue went from bright red at 6:30am to dark red by 8:30am and they rushed me back to surgery. A vein was clotting and they opened up my neck again and added another vein. Neck cut was from ear to ear the day earlier to remove all lymph nodes from right and left side of neck. They removed 40% of the left side of my tongue and replaced it with skin and veins from my left wrist, then removed a patch of skin and veins from right thigh to replace cut out on wrist. I ended up with 5 drainage tubes (all removed now) and a tracheostomy. The trach tube has also been completely removed and should heal and close up on it's own in 2 weeks. Left arm is sore and could take up to 6 months to heal and right thigh will heal on it's own. Neck is sore and will probably be for a good while. Can't eat any solid food and can't speak well, but at least they removed the feeding tube just before I came home. Went to Cleveland yesterday for removal of last drainage tube. Have to go back Aug 13th to see plastic surgeon for post op and then Aug 20th to radiologist (may need radiation and chemo), then back Aug 21st for post op with operating surgeon. Side note: When they wheeled me to surgery last Thursday, when I got to OR the doc's and nurses were talking and getting ready. They talked to me and asked what was my fav band and song. I said "Something" by The Beatles and they placed an I-Phone or something next to my ear and said listen to this while we get ready. It started with "Here Comes The Sun" then "While my guitar gently weeps", then "Hey jude", "Ticket to ride" and finally "Something" started and they put me out. I lucked out, they didn't have to remove jaw bone, so they didn't have to operate on leg to remove bone from there to replace jaw bone. OK, I need a little break now, back is starting to ache from being on it for 10days in bed. BBL.........nurk.

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Nurktwin,

I don’t know you except for your posts and passion and commitment to this group.  Praying for you and thinking of you and all that you are going through.  I’m handling my sister’s care who has a similar cancer.  You will get through it.  Wishing you only the best and lots of love.

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On 8 August 2019 at 4:19 AM, nurktwin said:

 Side note: When they wheeled me to surgery last Thursday, when I got to OR the doc's and nurses were talking and getting ready. They talked to me and asked what was my fav band and song. I said "Something" by The Beatles and they placed an I-Phone or something next to my ear and said listen to this while we get ready. It started with "Here Comes The Sun" then "While my guitar gently weeps", then "Hey jude", "Ticket to ride" and finally "Something" started and they put me out. 

So glad you are recuperating. That was quite a scare. By the way, impeccable musical taste. :D

If it's okay now, permission to start throwing in some gentle humor? Do you think there's even a slight chance your medics thought you meant it like, "Oh, anything by The Beatles," - so they played a Beatles songlist that just happened to include George's masterpiece "Something"? Or does everyone in the world (including pre-surgery teams in Cleveland) know "Something" is  a Beatles song (which they surely would if there was any justice in the world)? Isn't it one of the most-covered songs ever? Either way, those are some great songs to hear in any circumstances. 

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I'll be starting radiation and chemo about Sept 9th for a good 6 weeks. Radiation will be 5 days a week, so I'll have to find a place to stay in Cleveland for 6 weeks and come home on weekends. I'm NOT looking forward to the next 2 months!! I have appointments in Cleveland Sept 6 and 9th and then radiation will start Sept 10th and end Oct 27th. That's the plan as of today. Chemo could be 1 time a week for light doses or 3 strong doses over the 6 weeks, so far the choice is mine and I haven't decided yet.

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28 minutes ago, nurktwin said:

No relatives in Cleveland. I'll have to rent or stay at a hotel!!!!!!!!

See if they can give you a medical discount/bulk rate since you'll be there for so long. I once had to get a room fast to help someone out for a medical reason and they kindly discounted my stay, thank God! It was a big and much appreciated help.

cheers

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Nurk, would it be possible to do the radiation in a hospital near you?  I mean, you would still be treated at the Cleaveland Clinic, but maybe they would allow the radiation treatments to be performed at a local hospital.

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Radiation can be done locally, but NO-ONE trusts the local hospitals! And, I would then be under the care of local doctors, not my doctors in Cleveland. The cancer society has a program with hotels, if the rooms are unsold, we get a discount. But if a room sells, then I would be moved to another room or even another hotel. I'm not crazy about being moved every day or 2. There is also a place called "Hope Lodge" for cancer patients that is free!!!! I think they have 31 rooms, but at last check they are all booked, I'll call again this week. 2 people can stay in the room, but there is no TV or food allowed. There is a central kitchen where you can bring food and share a fridge with others and a central dining area to eat. They also have a central room with a couple TV's to spend some time and a garden area out back to sit and relax. A shuttle bus is available to take you to the hospital for treatments. The lodge is on a busy street about 1-3 miles from the hospital and is right near "Little Italy" with shops and good restaurants! I'll keep checking to see if something opens up and then call all 4 of my main doctors because they have to recommend me to get a room. Another thing I heard of is that a lot of collage students at Cleveland State are renting in Little Italy, maybe I can find a place to rent there. I'll keep checking and see what happens. See ya soon.............Nurktwin.

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Oh! What a hassle having this uncertainty with your accommodation.

Hope you find a nice place soon. Comfy, basic, clean, so you can relax & nap. 

I know this won't help you... but one of best things about McDonalds burger chain is how they created the Ronald McDonald home away from home accommodation for families of sick kids.  Means loved ones can stay nearby while kids are receiving treatment.

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