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Re: Permanent PEG? [Re: r0se] #199678
01-13-2020 04:18 PM
01-13-2020 04:18 PM
Joined: Oct 2019
Posts: 31
Boston, MA
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r0se Offline OP
Contributing Member (25+ posts)
r0se  Offline OP
Contributing Member (25+ posts)
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Joined: Oct 2019
Posts: 31
Boston, MA
Hi all,

Quick question - has anyone ever had a nickel sized red, sore bump occur along an incision line following head and neck surgery? My operation was in late September 2019. The bump appeared last week. I am taking antibiotics and have an appointment to see my doctor January 30th. Hoping to hear from people who had a similar experience. I'm freaking out because I don't want the incision scar to open and I don't know what it is.

In other news, I am officially beginning week 4 post radiation. I've gained a pound and am beginning to swallow again. I can swallow liquids and soft solids. I'm working on swallowing squash puree, cranberry juice, and soft bread dipped in melted butter. My energy is coming back and the mucus is much more manageable. I am taking it slow and haven't tried to bike, run, or practice yoga yet. I am hoping to try yoga/biking this week. Still using the peg for sustenance, meds, and water - hoping next week to increase the amount of liquid I am ingesting by mouth. Sending positive, healing vibes to you all. I check this website every day and draw so much comfort from this community.

Re: Permanent PEG? [Re: r0se] #199751
02-01-2020 08:09 PM
02-01-2020 08:09 PM
Joined: Oct 2019
Posts: 31
Boston, MA
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r0se Offline OP
Contributing Member (25+ posts)
r0se  Offline OP
Contributing Member (25+ posts)
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Joined: Oct 2019
Posts: 31
Boston, MA
Hi all,

R0se here with an update. I am 7 weeks out from radiation. I honestly surprise myself every day. I am gaining more and more energy. I am now able to run, practice yoga, and bike. I try to run or walk up to (at least) 15000 steps a day. *Pre cancer, I was a marathon runner who was practicing at least 3 hours some form of exercise a day.* I am no longer napping, but I do feel sleepier during the day. I also forget things. I try to be hyper organized to make up for it.

Food wise...I can easily (ish) swallow water, coffee, vitamin water, pureed things of varying consistency. I use my teeth to mash and then my finger to bring back very soft foods (peanut butter watered down, moist bread dipped in hot butter, croissants/donuts dipped in coffee, oatmeal with milk, frozen berries then microwaved until hot and mushy etc. I struggle with very "airy" things - chocolate mousse, the damned foam milk on fancy coffee drinks. Oh, and I cannot do apple sauce.

Alcohol and anything spicy...not happening. It feels like my whole mouth is on fire. I am not sure if this is because my mouth is definitely still healing or because my new mouth can't handle those flavors.

Speech...Im told that I am pretty clear. I can address strangers simply, answer the phone and have simple conversations, talk with my family. I try to be very loud, use simple vocabulary, use non verbal cues, and avoid sounds I can't pronounce. I cannot do g, d, or ch. Im sure there are more that I can't do. I have a prosthesis that does seem to help. It makes my voice louder.

Lymphedema...I still have it on my neck and cheeks. I look like a chipmunk. I can't get rid of it. It's super frustrating - 1. because Im vain 2. because my face is something I shared with my half sister and my dad. My sister and I otherwise look like exact opposites. I also saw my mother and grandmother in my old face. Now, all I see is a chipmunk.

PEG...still have it, but trying to use it less and less. I have managed to gain 10lbs (what I had lost since the start of cancer) within 6 weeks of radiation ending. Now, I am trying to swallow enough food to maintain.

My new goals are to somehow figure out how to drink alcohol (Im in my twenties and single, alcohol is very much needed), get the lymphedema under control, keep swallowing new things, swallow more things in a way that is not gross so I can eat with friends and family, get the PEG out, and slowly build my physical stamina. I'll be running marathons and working abroad again - just wait.

Re: Permanent PEG? [Re: r0se] #199752
02-02-2020 07:06 AM
02-02-2020 07:06 AM
Joined: Jun 2007
Posts: 10,489
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,489
PA
Hi Rose!

I cant believe how well you are doing at only 7 weeks post rads!!! Thats absolutely wonderful!!! Most patients have not gotten as far as you in such a short time. I certainly was not anywhere near your level of recovery that quickly.

Alcohol normally burns like crazy after rads. Ive only taken a couple sips in 12 years and it still isnt appealing to me but I never was much of a drinker anyway. You may want to have a chat with your doc about alcohol. This subject has been discussed many times so Im sure if you did a quick search you could pull up several long threads seeing what many other OC patients have done post rads. Alcohol is known to be one of the things OC patients should avoid to reduce their chances of a recurrence. Ive asked many top US doctors over the years and most tell me its not worth risking a recurrence for a drink. Unfortunately, those who choose to drink and/or smoke after going thru OC usually arent around very long if they return to their old habits. Being young has been a gigantic advantage for you... just look at how quickly you have advanced in your recovery!!! The younger the patient, the faster they bounce back.

Since you gained some weight, thats a really good sign!!! My docs told me if I could maintain myself for 2 months without losing weight and not using the tube at all then I could get rid of it but unfortunately for me thats not possible. Its so much better to keep it and not use it than to need it and its not there. I hate to be negative about anything but Im always honest with what I tell everyone... during recovery, set backs can happen and they can come out of nowhere. A patient is doing great and all of a sudden they have one bad day that turns into 2 bad weeks of going backwards with their recovery. Hopefully you will not have this happen to you but almost everyone in recovery (especially during the first few weeks of a 2 year recovery) has gone thru this and it is NOT fun at all. Its not easy to handle mentally seeing such great improvements then to go backwards and to again work so hard to get back the great progress they've made.

In time your swelling should go down to where you can see a noticeable difference. Its still very early in your recovery. Im sure in time you will improve. It can take a full year to have inflammation subside. At your next check up, ask your doc about this too. With how great you're doing I cant wait to hear your 6 months post rads update and the 1 year and 2 year ones too!!!

Best wishes with everything!!! Keep up the great work smile


Christine
SCC 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 smile
Re: Permanent PEG? [Re: ChristineB] #199960
03-20-2020 06:57 AM
03-20-2020 06:57 AM
Joined: Oct 2019
Posts: 31
Boston, MA
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r0se Offline OP
Contributing Member (25+ posts)
r0se  Offline OP
Contributing Member (25+ posts)
R

Joined: Oct 2019
Posts: 31
Boston, MA
Hi all,

Here is an update on my progress for those who like to know what may be ahead. I have Adenoid Cystic Carcinoma (a super rare cancer that has no known cause -ie NO LINK to HPV, alcohol, drugs). I finished my six weeks of radiation on December 16th. Before radiation, my entire tongue (total glossectomy) and several lymph nodes were removed. Before the surgery, my medical team attempted two rounds of induction chemotherapy. The chemo did nothing. Before cancer, I was (still am!) a marathon runner, yogi, vegetarian, world traveler in my twenties working in the humanitarian sector. Here is how I'm doing now:

Feeding tube: My feeding tube was removed in February 2020 following a month of stable weight gain without using the feeding tube.

Swallowing: I mostly eat pureed soups and smoothies. However, I eat a soft solid with every meal. Yesterday, I only ate soft solids for lunch and dinner (a quiche and vegetarian lasanga). I swallow using water and my finger to push things back followed by effortful swallows. I cough to bring food back up that is stuck in my throat. I cough literally all the time during my meals to prevent food from getting into my lungs or choking me. I have eaten out with others, but if I do I stick to pureed foods and very soft solids in small bites. I prefer to eat alone.

Taste: My taste is not great. I can taste butter, peanut butter, coffee, coffee flavors, milk, squash soup - anything that is intensely savory. PLEASE REPLY IF YOU KNOW OF OTHER SAVORY FOODS THAT I CAN TASTE. Tomatoes sting. Orange juice stings. Alcohol is fire. I can stomach a cocktail if it is 3/4 juice. I cannot taste bad chocolate (Hersheys, etc) but I can taste brownies or very rich chocolate. I taste it the most when it is on the roof of my mouth or at the back of my throat.

Speech: My voice is awful, but largely intelligible. I was able to hold my own during a Skype interview with the camera turned off. I barely have to repeat myself anymore. I speak very slowly on purpose and choose words that I know I can say or fit the context. I never use complicated vocabulary. I miss speaking eloquently.

Swelling: My face is most swollen in the morning. I have a Flexitouch machine which I use for 45 minutes every morning and evening. I also have a compression mask that I wear during the day if Im alone and don't have to talk. I try to wear it when I sleep, too. This routine appears to be working. I'm told that my face looks like a normal face.

Physical Activity: I am running two hours a day again. I also try to bike or walk or practice for an additional hour. I'm a slow runner, but improving steadily.

Job: I lost my job because of the cancer. I'm looking for a job now. It's a really hard time to be looking and I'm very worried. I loved my work. This year has been very hard without working - work is what makes us matter, no? ANY ADVICE/THOUGHTS ARE WELCOME.

Dating: I have scars from the port, the surgery (one from
ear to ear below my chin, one down my entire thigh), and one from the trach. I'm afraid to date.

Re: Permanent PEG? [Re: r0se] #199965
03-21-2020 05:39 AM
03-21-2020 05:39 AM
Joined: Aug 2019
Posts: 55
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Barry Toronto Offline
Supporting Member (50+ posts)
Barry Toronto  Offline
Supporting Member (50+ posts)
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Joined: Aug 2019
Posts: 55
Rose. Sounds like you are recovering really well considering what you have been through, congratulations.

A few comments. On savoury foods, I have found “smoky” flavours easy to distinguish. Had a split pea soup that had some kind of smoked ham in it yesterday. Tasty. Also had some smoked salmon the other day that was tasty. Maybe that very savoury taste would get through?

Dating. Are you kidding? Scars are skin deep. With what you have been through, you are, I don’t know, a warrior? Warrior princess? How attractive is that? You are young and healing quickly, I suspect many dating prospects will enter your life soon, especially as you re enter “target rich” environments - like the workforce?

Jobs. The economy right now sucks - no doubt about that. This will change and the world will need more people who can cope with adversity - like warrior princesses! When things settle down, jobs will materialize - timing is unknown but be as ready as you can be. Meanwhile, hang in there and keep recovering.


Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
Re: Permanent PEG? [Re: Barry Toronto] #199978
03-25-2020 06:27 AM
03-25-2020 06:27 AM
Joined: Oct 2019
Posts: 31
Boston, MA
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r0se Offline OP
Contributing Member (25+ posts)
r0se  Offline OP
Contributing Member (25+ posts)
R

Joined: Oct 2019
Posts: 31
Boston, MA
Thank you. I needed that:)

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