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Psychologically shifting from strong to powerless??

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

What kind of experiences are out there regarding having a good mastery of life, successfully self employeed, good family relationships, healthy personal self care (healthy body weight, good eating habits, physically healthy), strong self perception, and enjoying life; and having that turn around to being surgically beat up, physically altered (radical neck), underweight, tired all the time, chronically mildly neausous, all restorative pleasures on hold, needles, IVs, mask, sunburn, and a tremendous amount of time waiting to see a doctor?
Mark has had one dose of cisplatin and 4 radiation treatments. He has mild neausea but is taking Emend, Zofran, Dexatron and Compazine. No vomiting. He has no swallowing or inner mouth issues yet. I have encountered with him a huge resistance to eating and drinking. I am well aware, and so his he, what dehydration will do. He was told to drink calories, so I have provided vitamin water, ginger ale, all kinds of juices, lemonade, limeade...and protein shakes, I will make them, we will add up the calories and he will drink 1/2.
He has never been sick in his life. His medicine cabinet had not a single bottle of medicine. He says he is doing his best. This is the easy part...there has to a be shift, he has to accept this is a process that is not going to feel good or taste good, and he needs to do it anyway. How do I get him there?
When he gets the PEG I can override some of his resistance. But I am not with him 24 hours a day.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Kim,

When Mark gets his feeding tube you will be able to take care of him better. You can get a pump to feed him at night which really helped me a lot. I had such a severe bout with nausea and vomiting that my wife had to take me to the hospital. And that was a 2 day stay. It is hard to explain what it is like when even the smell of food alone nauseates you. Jevity, Ensure, and Boost got me through it all. I used Nutren 2.0 at night for feedings through the pump and used 3 cans at 500 calories each. A person can survive on these products alone. Just keep lifting him up and try to get him to have a positive attitude, I know easy for me to say, but I had bouts of depression and still do. I am taking meds for this now and I am not ashamed of it. But through treatment I was a fighter and tried everything I could to eat until it was just impossible. But through the whole thing I could eat ice cream,floats and Apple Jacks cereal. My thoughts and prayers are with you and Mark, so hang in there.

Best,
Steve

dogsrule's picture
dogsrule
Posts: 96
Joined: Apr 2010

I felt the same way. Went from being a totally healthy and very productive person to being in bed and feeling helpless. Had a modified neck dissection in Nov. Had to wait to start radiation treatments until the end of December. I had a meltdowm in the grocery store when I ran into my neighbor and she asked me what was wrong with my eye ( it was droopy because of the surgery, has since gotten back to normal) had to call a friend just to get past it and out of the store. My husband took good care of me, as you are of Mark, he will get thru this with your strengh and love. I had the PEG put in the end of January after about 4 weeks of radiation treatments at my husbands insistance. I am so glad I did, it makes getting the nutrion so much easier and gets you on a good path to healing. This experience has taken some things away from me but it has also shown me how much I am loved by my family and freinds. You wake up everyday and it is the first thing that hits you, I have cancer, but now when I wake up sometimes it still is but somedays it's not. You do the surgery, you do the treatments and suffer thru all that comes with it, but the day will come that you are on the other side of this and life will get back to the way it used to be, it will be different, ups and downs, but it does get better. The PEG will help, lots of sleep, lots of love and support. He's lucky to have you on his team.
Stay strong your in my prayers.
Jo.

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Like Steve said, "you can survive on this stuff"...and I did. When nothing including water tasted good, I survived for seven weeks mainly on Ensure Plus, water and a few peach slices (DelMonte in the jars)....of ciurse all preceeded with an appropriate amount of throat numbing and pain relieving meds.

Most of the time, it wasn't because I was hungry or interested in eating or drinking. It was mainly out of necessity to survive and keep up strength enough to keep on driving myself to treatment and back home again.

I also worked from home during this entire ordeal. All of my regular job duties are computer related so it was easy to hook into my work computers...it didn't/doesn't hurt that I'm the only one that does what I do at work also...

That being said, I guess there was a certain amount of pressure (self induced) to keep producing. Although I did have assurance from my boss that my health was the most important thing. I could work when I felt good, and usually kept all of my schedules so that I didn't have any surprises or added pressure.

I'm one that likes to control my schedule as you can tell.

Being sick for me was hard as well also. I'm 56, not on any meds and never get sick. My big joke during treatment was saying, "Other than having cancer, I'm in perfect health".

So even not being able to take care of my own lawn, was hard to accept, and I eventually had to have the neighbors yard guy do it a few times for me....of course that came with a certain amount of resistance. After sweating so much and nearly passing out from the heat, and taking three times longer because of haivng to rest, I finally admitted defeat (temporarily)...

At that point, I just decided to do what I needed to do to survive....drink fluids, take in calories via Ensure, rest, drive to treatment, then do it all again the next day....day by day....

Good Luck and hang tough Kim, you and Mark will make it, it's just day by day sometimes....

John

MarineE5
Posts: 762
Joined: Dec 2005

Hi Kim and Mark,

In the first week, there is a big change in the way things taste. I didn't have Chemo, so I can't speak on that part. But, after 4 radiation treatments, my taste buds basically were gone. Everything tasted terrible. Liquids tasted like aluminum cans and food tasted like cardboard, period. Who wants to eat some cardboard? and wash it down with aluminum. I really had to push myself to do this.

I already had the PEG Tube from the surgery from the removal of part of my tongue as I needed the PEG to survive from the start. So, when it came to the treatments, I was ready to use the nutrition cans that I had from the start. I know that things change and the thoughts change on the PEG Tube as well. A few years ago, it was a given that we were getting the PEG tube. I was hoping Mark would have it by now, it would be a bit easier on him I feel. I didn't have to worry about tasting anything, just poured my cans in the Tube.

But the main thing and it isn't easy to do, but he has to remember, this treatment portion is for a small time frame of his life. He has to focus and mentally be strong. Yes, he will loose his energy and feel helpless, us men have to be strong, and when we aren't, we get confused. Loose our focus and can't see past the next minute at times. He has to clear his head and tell himself that he CAN do this, all of us here have done it or are doing it as he is also. This is no walk in the park. If he needs some med's for depression, so be it, take them. As one poster on another board wrote. Some people run, walk or crawl to the finish line, he stated that he crawled, took pain and depression med's, and was proud to make it. He is now one year out and doing fine. Back to playing baseball with his son.

Each patient has an Angel holding us up, you are Mark's. To all the Caregivers out there that read this, I THANK YOU for everything that you do for us.

My Best to You Both and Everyone Here

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

Hi there,

I think we have all been there. Unfortunately. I'm sure we all have to deal with at least a bit of depression now and then. I think we can find positive thinking people to be around, helps a lot! And then, it is really up to you. I know, it is very hard at times, to shake yourself out of it. Also, if possible, any movement, or exercise is fantastic for depression. If that can't be done yet, maybe even the idea, or thought of one day being able to do it. And looking forward to that is what you are going to do. Soon! :) I hope Mark, and everyone out there the very best of life.

I only pop onto this site every now and then. But still think about and pray for all. We are all in the same boat. So to speak.

Cindy

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Yes, and the PEG will definitely help when the drinking of Nutrition gets too difficult, if that does happen for Mark. Had my PEG in before any treatment, and 5-days after my first rad, and the pumps were hooked into my Port- that's when Jevity started providing me with all my Nutrition. And, yeah, it is a challenge to even keep up with the amount of Jevity that is prescribed, but you just do what you GOTTA do, you know.

As for the whys and wherefores, which you seem to touch upon- this is not a matter of deserving it, or not. It just is, Kim. Little kids who are fire victims- do they deserve a worse H--- than what Mark is going thru, or I went thru? Or how about the bad car accidents, of which I was one at the age of 13? No. And the paraplegics, people with MS, etc., etc. It just is. And I don't buy the line that it's God's way of testing us, because that implies God is cool with C, and might have a hand in it happening. No, it just is; and, bottom-line, all there is for us/Mark and you to do is accept it as the reality it, in fact, is, make adjustments and fight the best fight with this C that you two can. You and Mark both know he will survive this C and treatment, and the bad times are gonna be around for awhile. And with the help of the Drs. and meds, Mark will be okay. That's life, now, for Mark. The important thing is knowing he will survive it, and that Positive can trump any bad card dealt to him in treatment- try to make that Positive a thing of enpowerment, Kim- Mark will survive this fight with C, and the treatment.

Believe

kcass

Fire34
Posts: 353
Joined: Feb 2010

Kim
I know where Mark is exactly. My third week of concurrent chemo/rad, after missing my family for the time of treatment I felt like just quitting, period. If not for my wife and her unending support thru all this I would never have completed treatment. I had my PEG inserted during my fourth week of chemo and had it about 2 months post.
Ask your ENT if they have any swallowing exercise that Mark can do, to keep those muscles working. Is Mark inpatient for radiation? I was able to exercise on my way to radiation as it was about 1/2 mile walk.
I dont kow where you are being treated but one of my outlooks that got me thru, this may sound cruel, there is always somebody that has it worse than you. While I was waitng for the table there were patients that had burns way worse than any I received etc.
I started counting down, LOL when ten treatments were left. So I also believe that with your support he will make it thru. Best Wishes & Prayers
Dave

friend of Bill
Posts: 87
Joined: Mar 2010

Thinking back on our experience, I recall my wife saying that she had to choose her battles carefully. Early on, our nutritionist (you and Mark may need one eventually, don't hesitate to ask) cautioned us about not getting into power struggles over nutrition. Fortunately or unfortunately, Janie is a nurse so she knew how high the stakes are around dehydration, constipation, feedings, calories. Consequently she felt that she needed to stay on top of me. Of course I don't like being micromanaged, so there you go. We had never faced this dynamic in such a serious way and no one gave us a set of instructions! Plus anesthesia, chemo and radiation sapped me at times of motivation, strength and occasionally reasonableness. But we would get through it, reminding each other we are on the same team and using humor when we could muster it. Sometimes we both had to go to time-out! Remember, this is an abnormal situation.Try not to do it all yourself. Let the professionals play some of the bad cop to resistance - mine sure did. At the end of the day we got through it stronger, more committed to each other and still in love. But this deal is very, very hard, sometimes cruel, so give each other some slack, take good care of yourself and keep the long view - it will get better, you will get through it, but it's going to take a lot of bumps and a goodly amount of time. That was our experience for what it's worth. There's nothing but heros on this board so you are in good company.

Vince

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Kim,

Mark's progess sounds very familar to mine. I was hardly ever sick and very active prior to my diagnosis. At the beginning of my treatments my wife would push and push and push me to eat. I knew I needed to but just couldn't get it down, either too tired to eat or not motivated. I remember sitting looking at a milkshake for 2 hours, not touching it, but knowing I had to drink it. Then I learned my lesson after my second chemo as I got dehydrated...not fun, try not to let him make that mistake. That's when I got my PEG also (4th week of treatments). That made getting down the water and nutrition that much easier, and I saw my spirits go up along with a little bit more energy.

I was lucky as I didn't have major issues with depression, but I could see where it easily could happen. And I think it is as important as nutrition to have a good attitude. Whatever it would take meds, or meeting others with c or a therapist. He really needs to keep his attitude as strong as he can along with keeping his body strong. Surrounding myself with upbeat people helped a great deal. Two of my friends were recent cancer survivors. When they found out, they would call or email me constantly. And the one would not take any of my whineing. He would unleash on me if I did, and actually for me that worked best. I would always be laughing after his calls. Laughter is a great medicine I've heard and when I had a good belly laugh, I could forget about all the crap I was going thru for a day or two.

The PEG will help, but there will be other obstacles. As everyone has said, you both can make it thru this. Know everyone here is pulling for you both.

Greg

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Kim,

Sound a bit like either Mark needs to get on these pages and get the information 'himself' - and ask the questions OR you may consider counseling for both of you. You explaining what is going on would be an important part - giving the counsellor the information to feedback to Mark and give him some guidelines to work with. Advice is often far more effective coming from a 3rd party regardless whether you are 100% correct and have 110% good intention.

Mick Tissue should chime in about now ! Mick ?

Regds
Scam

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Thank you everyone for all of your very helpful replies. I have come to realize all the fronts that cancer strikes. It is not just a physical battle, but a mental, spiritual, and even relational. Mark has faced "hard" before; but nothing can prepare one for this. I was raised to be a caretaker, and it is one of the things I do best. I have tried to reserve my caretaking skills for my work and raising my chldren. This has never been an aspect of our relationhip in that we are both capable, independent adults. I have never had to "micro-manage" this man because he is perfectly capable of taking care of himself. Now the tables turn and we scramble to adjust. He clearly wants to maintain that independence; but needs so much to be cared for (in such an unfamiliar way). We will adjust, remembering it is a short period of time compared to the time we have been together.
I would love for him to join these boards. As it is, I share with him what I learn from all of you. I bring all of you to him. It makes me seem wise. :) The 3rd party can have a stronger voice...hopefully as he meets with some of his medical peeps today he will hear it.
Thank you all...thank you,
Kim

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Good Morning Kim,

When all other logic fails, you can always bring it down to that primal way of thinking, LOL...it's a man thing. Just like asking for directions or reading the instructions....it's always a last ditch effort after all other attempts fail....

Even after all of that, your (woman) idea was really ours (man)...

John

j3rey
Posts: 56
Joined: Apr 2010

I am also a caregiver in this situation. My husband is a strong man and is 'perfectly healthy other than having cancer' (as skiffin says :) His doctor explained to him that he has to take the mindset that food is medicine. It may taste like crap and it may need tons of water or even pain meds to go down, but it is medicine. He told him at some point he had to stop viewing food as 'food'. I hope this makes sense. We are beginning week three of radiation with no chemo so chances are symptoms may be different and probably a bit less than your partner. So far eating regular food is still possible. Taste buds are changing and dry mouth is a bother. Fatigue is the biggie. He is used to being extremely active and must rest now several times a day. We have found that dairy does make the mucous worse and thicker so we are trying to avoid it as much as possible and still keep high calories. Know it is hard to see your strong partner struggle. I hope that the PEG helps. Hopefull he'll feel better with better nutrition. You're in my prayers.
Jen

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Jen,

You can try Rice Milk, Almond Milk and Soy milk as good alternatives to milk products, preferably organic if you can get it. It's good to rotate them if you can but not essential. They all have about: 1 cal/ml. The PEG can usually take about 200ml. I mixed Vitashake in with my Rice milk and survived well for 3 month. It's a plant based nutrition shake, comes in powder form. A very good alt to Ensure and the other milk based supplements. Has all the goodies you need.

All the best
Scam

j3rey
Posts: 56
Joined: Apr 2010

Thanks Scam,
Did you ever try coconut milk? It seems to have good fat and a bit more calories than Almond milk or Rice milk. I have not found Vitashake locally but will check online. Right now he is still chewing and eating normal food. It takes him a long time to eat with the lack of saliva and teeth that were pulled. I imagine sometime toward the end of this week or beginning of next week, food will need to be blended a bit so some of the chewing is done for him. If he follows the track that the RAD doc says then it will be mostly liquid and very soft food starting around week five - so I will try to find the shakes before then. Thanks.
Jen

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Jen , Coconut juice is excellent especially of you can get fresh ones. I am lucky as I spend about a week a month in Vietnam and you get nice chilled coconuts at most restaurants or street stalls so they just chip a hole in the top and stick a straw in & bingo, you get the best natural drink ever !

You can find Vitashake online or through their distributors. It is MLM but don't let that put you off, the product is excellent. You can join and get a customer number and get the 20 or 25% discount. it comes in serving size sachets, 10 in a box. When I was 100% dependent on the PEG, I managed about 4-5 a day so with the rice milk, that gave me 1600 - 2000 cals/day. Kept me alive and stopped weight loss after I had loss about 50lbs & I'm not big.

Scam

j3rey
Posts: 56
Joined: Apr 2010

That sounds awesome. We are in Florida. Plenty coconuts around. I'll have to try just chiling and poking a hole in them!
Thanks!

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

Kim,

I ynderstand how you feel. For the first couple of weeks of treatment my dad was the same as Mark. He got very dehydrated before he even started treatment and had a bad fall. He did not want to eat and lost 6 pounds. After he got hydrated during chemo a couple of times he soon realized he felt better. My mom and I hated trying to force him to do things and to fuss at him. But, thank goodness he did learn his lesson and is now doing amazing.

I know this is hard to believe but things will get better for both of you. I will keep praying for you and please know that you are what will make Mark get through this and he will thank you.

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