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My father's update...

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

Hey everybody!

I know, I know... I haven't been much here lately. Actually, I did not write for quite some time... The reason for that is the fact that I needed some time off. Off everything, off cancer and thinking about it, reading about it, writing about it. It affected me so much that I could barely live normal for the past few months. I love my parents and my Dad's desease affected us all. I have my own young family and I just needed some time.

Well, now my Dad's update:
He's been out of tx for almost 7 weeks now. When he finished in Sept. he was admitted to hospital due to strong pain and unable to eat. He was on IV fluids and IV food. He stayed there there for a month. His neck was severely burned. But they took good care of him and he was very strong all the time. Then he was sent home and he started to eat on his own. He was doing really great and I was so proud of him. Although he had pain he tried to eat and started to eat 4 meals a day: variety of soft food and one Prosure a day. He is still doing fine. His weight remains the same and I hope it stays that way. He is not gaining it yet but my mum and dad are trying really hard to at least keep it steady.

He has some pain in his mouth - on his tongue where the tumour was. The pain is not that strong. He still feels a bit nauseated in the morning and is shaking a bit. Also a bit anxious (taking some meds for that). He is also physically active a bit, but gets tired easily. His voice is hoarse, but a lot better for the past few days.
So, overall he is doing great, he never had PEG tube and any strong pain meds. He is a true hero. I am soooo proud of him.
But the truth is that I'm so scared what the future will bring... He has his first post tx check up in November 21st. I don't know if that is going to be PET scan or just normal check up. Since his 3 months post tx will be in December, he probably wont get PET now in November yet. But anyway... It scares me. He's been thru so much and I just feel that he deserves NED.

Just like all of you great and wonderful fighters on this board who try and fight so hard... you all deserve and need that NED word! And not just NED for the first time but for the future!! I feel so sad when I read about recurrances and it scares me, since my Dad is a good candidate for one in the future (multiply lymph nodes, the biggest package was 8 cm big). And he had his nodes enlarged for a year before he was finally diagnosed.

I can only hope and pray to God for a good outcome in the end. Believe me that I'm thinking of all of you everyday and I pray every night for you to get thru this and stay healthy. Thank you all who helped me with your great advice! My mum told me that without this board we would be completelly lost and scared. Now with all this info from you I knew what was going to happen and how to cope with that. Thank you all!!

I'll keep you posted!

katenorwood
Posts: 1820
Joined: May 2012

Vanessa,
Yes your Father is a strong man ! I am so happy things are moving positively forward. And you need time for you and your family, never ever feel bad about this. Your parents would be the first to tell you this ! I have been so impressed on what a great advocate and caregiver you have been for your parents. You are a very strong wonderful daughter ! Hugs sent ! Katie

Oh also....praying for great results for your Fathers check up in November....yes he deserves NED !

luv4lacrosse's picture
luv4lacrosse
Posts: 1385
Joined: Jul 2010

I can totally relate to needing to get away for awhile. I too took some time off and had a run of NED's going, and now find myself back needing the support of all of my CSN buds once again.

Great news your dad is doing better, and we have all been there worrying about the "what if's" even while we are NED. All I can tell you is try your best to worry about what you can control, and none of us have any control over how long we will remain NED. I was approaching 2 years NED and felt like I was untouchable and I could do anything if I beat the C. I now have a recurrance and try to worry about what I can control, IE: Take all of the chemo regardless of how bad the side effects are, try to stay in shape stay positive ETC. and the chips will fall where they fall.

Hang in there, and the best thing you can do for your dad and family is to make sure that your loved ones that depend on you get you in a good state of mind and attitude.

Best

Mike

phrannie51's picture
phrannie51
Posts: 3672
Joined: Mar 2012

recovering from treatment takes more time than any of us want, it just is...I'm so glad he's eating and doing he needs to do....we're still in the one day at a time mode, every week he'll get better.

Remember one of the rules of this is....don't fight battles that aren't in front of you...keep that energy for your family...think positive!!

p

hwt's picture
hwt
Posts: 1888
Joined: Jun 2012

Sounds like you and your Dad are both on the right track. I know it is easier said than done but don't spend energy worrying about something that may never happen. Enjoy your young family and see that your Mom & Dad do too. It would sadden your Dad if you become consumed with worry. Show him the happiness of family. Have thought about you and do hope you will continue to pop in now and again with good news, in the meantime, have some family fun time.

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

for your wonderful words and support.

It is so great to see how supportive you all are... In our country there're no forums like this where people can be so supportive to each other. Well, we are small country and head&neck cancers are rather rare. And patients with this tipe of desease are not using internet to seek for information. So there's almost nothing I can find.

But all of you are such wonderful people... My Mum and Dad are so grateful.

Dad says that he has a bit more pain than before. He is also not gaining any weight, maybe a bit losing... I think it's because he still can't eat really solid food - everything is mashed or mixed. He drinks one Prosure a day, maybe he should two... He can eat pasta, mashed potatoes, gravy, eggs,... Meat is harder to swallow even if it is minced.

Is it normal that he feels more pain inside his mouth than weeks before?

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I'm so happy treatment is done for your dad. I can tell you my mouth was more sore after treatment than during treatment. I am now 16 weeks out and it's much better. I haven't gained my weight back yet either. It's very frustrating as I was thin to start with. My onc office told me this is not unusual, it takes time (lots of it) to put the weight back on. They tell me the key right now is to maintain and not lose anymore. I am now doing swallow therapy to help me with meats and other hard to swallow things, it is helping. You may want to ask about that.
Good luck to you all.
Take care of you too!
Billie

phrannie51's picture
phrannie51
Posts: 3672
Joined: Mar 2012

I'm 2 months out, and still bump into things that are surprisingly sting-ie...it took me three weeks after my last treatment to put anything at all into my mouth...liquid or otherwise.

Our bodies are in a healing mode, after treatment...I think all our calories go to that rather than putting on weight. I'm gaining, but it is really slow. Icecream has always been my downfall when I was trying to lose weight...it is my friend now. I can only taste the first few bites, but with the texture and the ease it goes down, I finish a bowl with no problem :).

p

hwt's picture
hwt
Posts: 1888
Joined: Jun 2012

I continued to lose weight for about 4 months after tx, usually about 2 pounds a week. Now it has leveled off to an occasional pound. I had thrush which made just about everything burn my tongue. What I can't figure now is how I can't drink ice water or cold soda but have no trouble putting down a chocolate shake...go figure. We're glad you found this site and shared your family's journey with us. It was interesting when you explained how your Dad traveled by ambulance with other patients to tx. It's a small world...it's a good world...enjoy!

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

You think it is finally going to get better and then you make a few steps backwards. I've already read here that one week it is better then a few days worse, and then again better, and then again a bit worse....

And yes, he is only a month and a half out of tx.... His tongue is coated white now for a few days. Probably he should be more hydrated? My Mum says he drinks some liquid but not enough. He drinks tea because water hurts too much.

And about his tx... In Slovenia we have two biggest University hospitals. The best one is in our capital city Ljubljana. It has Oncology Institute where my Dad was treated. When you're diagnosed with cancer which requires daily travels to tx (chemo/rads) they offer you ambulance. Ambulance comes to your home and drives you to tx everyday. In that car there are usually also other people who live close by. So he travelled with few people and different types of cancer.
When they discovered he was dehydrated (around 20th radiation) they kept him in hospital on IV fluids for two weeks. After tx when things got worse, they admitted him again for a month. They never offered PEG tube and they're not much in favor of it. Instead they rather kept him in hospital as long as it was the worst and then sent him home when he was ready to start to eat on his own. Everything is covered by insurance except of Prosure (it is covered only 50% and still terribly expensive).

Sending you all greetings from Slovenia. The weather is cold, snowy, rainy...

hwt's picture
hwt
Posts: 1888
Joined: Jun 2012

Suggest your Dad try tap water or room temperature. Blessings to you and yours from halfway around the world!

luvofmylif
Posts: 344
Joined: Sep 2012

We are in St louis but isn't it kind of strange knowing that all over the world people are going through the same treatments with all its challenges. It helps for some reason to join together in this fight as we all share the common goal of beating the cancer. Tell your Dad hope he feels better soon and he has friends from far away.

Joan

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

will probably be the best. Or maybe little warm. He told me he can't drink cold water and maybe even room temperature is too cold for him. We usually drink tap water but he says it is too hard for his tongue. It "bites" his tongue.

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

So glad to hear from you. Totally understand the need to take a break and glad you did ...but I have to admit I was concerned since you had been gone so long.

Tell Mom and Dad hello !!! No feeding tube, wow...your Dad is truly one tough guy ....full respect if he went through all that with no feeding tube. :)

You are still on the prayer list and will remain there till you ask to be removed.....again, so glad to hear from you and on the news of your Dad ..

Best,

Tim

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

So glad to hear from you. Totally understand the need to take a break and glad you did ...but I have to admit I was concerned since you had been gone so long.

Tell Mom and Dad hello !!! No feeding tube, wow...your Dad is truly one tough guy ....full respect if he went through all that with no feeding tube. :)

You are still on the prayer list and will remain there till you ask to be removed.....again, so glad to hear from you and on the news of your Dad ..

Best,

Tim

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

To be honest I think about you and your family and praying that you will stay strong and healthy. Thank you for your concern.

But to say the truth it's quite exhausting for my parents to think about food, how to make proper food, how he will eat it, swallow it, etc.... All they're thinking about these weeks is food. :)

My Dad says hello to you and your family!

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

And two things on drinking:

Have you tried to boil his water before he drinks it, or let the water sit out in the open for several hours after you get it from the tap, but before he drinks it? I don't know about your country, but here in ours, we add chemicals into the water that may be offensive to some - some of these additives evaporate if water is drawn from the tap, then left to stand, or if it's boiled.

And - it will help if he tries to only have teas that have no caffeine or are decaffeinated. Caffeine reduces the amount of water your body can use.

Oh - and here in Kentucky the weather is cold, rainy (no snow YET, thank goodness).

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

Thanks for the advice about water. He will try it. Actually he drinks very light teas - camomille.

Happy Halloween!

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