Today was Marvins last rad treatment. He was really tired and had a rough start to the day. But he made it and we are now ready to let his healing begin. They told us that the rad would work for up to 6 more weeks. They will be leaving his tube in until they see he starts eating by mouth and gaining weight. It will be a nice change for him not to have to travel 120 miles round trip each day for awhile. I am sure he can use the extra travel time for rest here at home. We were told to make sure that he keeps getting enough cans down and extra water. He seems to be having alot of thick mucus today(which has caused him to not be able to keep his food down that we got in him) We hope that by getting extra water in him this may help with the thick stuff. He thought he would sleep in a recliner so that he isnt laying down to see if that helps him. He had a total of 40 treatments.

Barb,
Congratulations on getting through treatment. The next few weeks will be the worst so keep him hydrated. A humidifier will help a lot also.

Hi Barb,

So glad to hear you and Marvin are finished. You will both get the much needed rest you need now after logging in all those miles. I think you spent about 160hrs on the road! That is almost 7 days! Clint hasn't been eating as much so I'm pushing the Jevity. He was doing pretty good until the last couple weeks.
Clint finished today also. He did get a couple injections to boost his RBC and WBC also. Now we go back in 2 weeks.
Mom got her PET Scan results today and it only showed the area in the lung. Her doctor is going to do a consult with a pulmonary doctor and go from there.
Vicki

Barb, so glad for you both that the rad is over. Here's a hint- keep some Pedialyte and mild flavored Gatoraid in your pantry. When Marvin is not feeling up to much nutrition or has problems with keeping food down, give him the Pedialyte or Gatoraid as a boost for electrolytes[gatoraid was hard on John's stomach sometimes -the Pedialyte never caused as problem] We would do 6 or 8 oz by peg every few hrs. on days he could not tolerate anything else. 40 tx. WOW! I know you both are really tired. Amy in the Oz

Congrats to you BOTH. There are still quite a few weeks of some ups and downs but you guys are on your way to recovery.

The next 2 to 3 weeks will be the worst so be prepared. Keep the water and food pouring in. Carnation Instant Breakfast VHC was a life saver for me.

Good luck both, the next week or two will be hard

Love Liz in the Uk

HI, We are 16 days since our last rad! It is still hard. Tom says he doesn't believe the 3 week number is magic. Everyone says it takes 3 weeks to notice a difference. I can't wait!! He still has a severe sore throat. I am encouraging him to keep tyring to swallow. You sould see the looks I get! Hang in there, the light is starting to shine through! God BLess

Lady joe

Hi, LJ- Not everyone I know says 3 weeks is the magic number and it certainly was not for us :rolleyes: The majic number is when the person enduring this tx. starts feeling better-different for everyone- 16 days out of rad is still "feeling the results of rad" for most. Trying to swalow is good- sleeping oar resting when you need to is good-keeping up with pain control is good-experimenting with food is good- taking your time is good. Amy in the Ozarks

I have to agree with Amy - there was no "magic" change. It was more like the least perceptible change imaginable. In fact, change in the early months was measured in three week increments for quite a while. It is a very slow healing process. I'm not sharing to dissapoint anyone, just to not let your expectations get damaged by the slowness of it all. A few months and you might be eating some solid foods and even tasting most of it!

Rob is 5 weeks post Tx and we are still waiting for the magic day,though i must admit the last three days do seem to be seeing a change and he is definately not sleeping so much.Now he seems to be niggled with minor aches and pains (ear,jaw stiffness,shoulder pain )but he is a lot brighter.Hope your magic day comes soon.

Lizin the UK

Gary when is the magic day when the bear with a sore bum bit goes?

LadyJ,

Just like everything else associated with medical Txs, everyone can react differently to the same meds or surgery or chemo or rad, etc. There are soooo many variables to come into play that can and will affect how each of us reacts. I was totally heathly and physically fit before my Dx. I also did not have to have any pre Tx surgery, so if anyone should have had it easier during this Tx it should have been me. I came out of that nasty tunnel in my 3rd week post and many of us on this site did so around that time as well, BUT if your H doesn't don't take that as a sign that something is wrong with him. In fact very few people have ever said they started to feel better BEFORE the 3rd week. So the 3rd week is usually the earliest time to see positive signs.

Good luck and lets hope the beast loosens it's grip soon. I just remember one day I was still feeling like S..T and the next morning I woke up and said WOW I feel a little better. It wasn't dramatic but I it was better and I just knew that it was the beginning of the recovery. As Gary says, it's slow but over time he will get progressively better.

Lady J, I myself am 2 weeks finished with rads and feel no big improvement. My throat is still very sore and is a killer when I sneeze. I look so foward to the day I feel I am heading back to some sense of nomalacy. I have found the soft foods that allow me to swallow easier. Good luck and God bless.

Lady J

Marvin will be starting into his 5th week post tx also, we still havent seen that magic turn a round yet. Matter of fact he seems to be getting a little more depressed. I did up his anti dep meds this week per the doctor. He still doesnt eat anything by mouth and if I am lucky I can get 2oz of water down by mouth though the day. I worked an extra job this week which left him home alone more and that may have added to the depression so I am going bact to only 5 hr per week until he seems better. We also just had our first grandson May 11, and Marvin has been to tried to really enjoy him I think he also feels down about that. We go to see the doctors this tuesday for a check up I am hoping they will encourage him to eat more by mouth and suggest anything esle to help him get more energy back. We did have a few days a couple weeks ago that he did have a little more energy he took a walk on day and was vacuming the next. He did go with to hospital on May 11 that may have draind him alot. He had to stay there the whole day until 11pm to see the new little one. So I figured maybe this past week was a catch up from being wore out.

Wow! My husband has 8 tx's left and I didn't realize he would still be experiencing pain and difficulties for so long afterwards. I thought the healing would begin right away.

Melissa,

The radiation that is administered continues doing it's thing for a few weeks following the actual "final dose". I seem to recall being told something like 3 to 4 weeks. This is why you should not expect any magic and sudden changes immediately following that last round of radiation.

Bill D.

Melissa;
Bill D. is absolutely correct with the 3 to 4 weeks post TX effects. Radiation is "the gift that keeps on giving" and it will take some time. Continue to keep Billy swallowing no matter how it feels and keep plenty of fluids passing through, even if it's just swishing and spitting. The more proactive he is the easier it will get.

Best wishes,
Steve

Congratulations on the completion of the treatments. My turn to get the treatments next. YIKES!!!

ok, guys, you convinced me not to look for the magic number, but I think my husband is hoping for it. He has started to eat a few tablespoons of food and he says his mouth doesn't taste so much like metal mouth.Thank God for the peg tube! He still has to decide on 3 more rounds of chemo on a pump. They are telling him patients that have this extra boost seem to have an advantage of the C not recurring so ... also I noticed on Talbill what is 5fu pump? Thanks, Lady J

Lj, 5fu is a form of chemo, like cisplastin or carboplatin, etc. The pump is the way it is administered over a prolonged period of time[ you wear it] as opposed to sitting in a chair being infused for several hours.

Thanks, JAM, Has anyone on here had that sorta treatment? I would realy like to hear form someone who has. This is a SLOW ordeal.
But seems today my husband had a bit more energy. So thank God for small miracles!

Lj, I should have mentioned in my post that a long time friend of mine has been on the 5fu pump off and on for many months now while battling liver cancer. He is able to go about his daily life with some constraints- he gets tired earlier in the day, reacts to cold or damp weather more, not much appetite, but still "going and doing". Hope there will be some folks here who have experience with it. Amy in the Ozarks

Hi Melissa

Rob is now 6 weeks post Tx,and we are seeing very little improvemnt .Every time we think the mucous is subsiding it comes back with a vengance,he is eating by mouth very sporadically,and through his PEG still and his mood is very variable.The only difference now is we have stopped trying to anticipate the magic day and just listen to everything we are told by the "old hands"and take every day at a time.

Liz in the UK

Melissa and Liz,

Liz comparing Rob to others may not be a good comparison since according to you he is continuing to smoke and drink as he did before and that certainly may affect his recovery when compared to others that don't. It is, at best, an unknown variable and at worst, the worst thing one could do to "aid" recovery.

Thanks David.I guess when i entered into the discussion about alcohol and cancer i was setting myself up for a comment like that and i guess you are just saying what everyone else is thinking.I am sorry Melissa and of course David is perfectly correct i am in no position to make comparisons to any one elses recovery and trust me i wont make the same mistake again.

Liz,

I hope you didn't take what I said as malicious. I certaintly didn't mean it that way but if it came across that way, I apologize.

What I meant to say is that it's terribly difficult to compare how two people getting the exact same Tx will do, much less having different varibles thrown into the equation especially one as egregious as continuing to do something against medical advice.

Thanks for that David i appreciate you taking the trouble to expand on your previous post.No apology needed i have to say my emotions are frazzled at the moment and i probably read too much into things. Robs behaviour has tested me to the limits and i am afraid at the moment i am found wanting.I guess i have some big decisions to make over the next few days because the situation cant go on for either of us.
I remember when i started this horrific journey you were the first person to answer my first post.Who would have guessed it would end like this.

Regards Liz

Liz,
Have not got any magic answer for you.
Wish I did.

Being a caretaker is the hardest thing I have ever done.
We are the first to know when it is a bad day and have to walk on egg shells to try to calm frayed nerves. Or try to figure out schedules we can't really control. Felt I had no control almost daily. Was I that good at coping or just walking through like a zombie?
Nope. Forgot how much fun it was when I asked the Dr a question I knew he wouldn't and the look he gave me cut right through my soul. Trying to keep everything going while smiling about did me in.

As a caretaker we also see thru the face they put on for the world and show us the battle.
It really, really sucked big time.
(hope that's OK to post)

I'd do it again if the need arises.
But I would open up and ask for more support from others. Is there a group thru the hospital or locally to join?
If not post here..... lots of us understand.
Maggie

Liz, there's so much going on right now it must be very hard to sort it all out. I remember when you first came on the forum and the issues you were dealing with. You have been an amazing support to Rob and you may need a break. Don't make any decisions when you're tired and upset. Can you get time away for yourself? Maybe it will help you figure things out. Hang in there. Regards JoAnne

Liz, we caregivers are in your corner and we know the toll this is taking on you. Stay strong and please find ways to do some good things for yourself. Amy in the Ozarks

I am ashamed to have say that it all fell apart on Sunday.I begged and pleaded with Rob to stop drinking and to take his tube feeds but nothing i said or did made any difference and by Sunday he was taking only 600 calories a day by his tube and not eating anything,and every day he would get off the sofa get dressed and go to the pub for 2 hours.When he got back he said he wasnt hungry and in the evening he would have a glass of wine and go to bed without a feed.So i did the only thing left i could think of.I told him i couldnt watch him killing himself and that i couldnt understand why after all the time effort and care he had from the hospital and all the support staff he was behaving like this and if he wasnt going to stop this destructive cycle ,i would have to go.His answer was simple.Two words ,and they werent very nice.So here i am.Somehow i found the strength to pack my bags and get in the car and now i have to live with it and its the hardest thing i have ever done.He hasnt been in touch and he wont answer the phone but i hear about him every day from a friend .His family have been 100% supportive of me,but i dont expect anyone here to understand and i realise that what i have done will be a completely alien concept to all you woman who were so much stronger than me.I will never forget how you all helped me to help Rob through everything and i am sorry we let you down,you brave people deserve so much more.

Liz, Do not feel guilty. Rob has chosen his life style. You cannot control him or his choices. You have to take care of yourself. Maybe, just maybe, he will hit bottom and realize he has to take care of himself to live or he may not. You have NOT let any of us down. You have given to us. Please continue to post and be a part of our group. You have knowledge to share. Linda

Liz, there are lots of people here who DO understand. Good for you! Destructive, abusive behavior is just that, whether the person is well or not. You have done as much as you can, but nobody can change another person's behavior. If Rob chooses to behave in a manner that you cannot tolerate, then you are absolutely right to leave. You have shown incredible strength in a very stressful situation. I am proud of you!

Liz, you are quite wrong to assume that "we women" would not approve of your actions. Staying in that situation would be comparable to sticking your head in a lighted gas oven. It is a "no-win" place for you to be until Rob decides he would rather live than die. Most of us caregivers have dealt with angry,frustrated,scared, doped up partners, but for the most part they all wanted to survive and were working hard to do just that. It sounds like the only people that may be able to help Rob at this point are his Doctors. We know this is incredibly hard for you, but please don't get down on yourself-you don't deserve that. Amy in the Ozarks

I would be more worried if you didn't leave since that would be "enabling" and not healthy for either one of you. I can also understand where you would be second guessing yourself.

It is a healthy boundary and Robin needs to know that there are consequences for his actions. You gave him a choice and he chose the unhealthy activities - it's really on him. Doesn't make it any easier to sit back watch it though...

Liz,

Why spend one more ounce of energy and emotion on someone with his unchanged destructive mentality? Easy answer.

Why let his unchanged destructive mentality harm you? Easy answer.

He flat out doesn't deserve to be on the same planet as you, never did, so continue to be the stronger person and forget him.

Liz - as hard as it was for you to leave, you did the right thing. You had already done everything that you could to help him through this and the way he treated you - well, I'm surprised you could put up with it as long as you did. As Amy said, when people are sick, hurt, confused, sometimes they do temporarily lash out at the ones they love (I went through this with my father, who was very ill for 3 months before he died) but in the end, they are sorry and grateful to have had the support. However, you've been going through this for longer than you should ever have had to, and it's time to think of YOU, as hard as that is.

Maybe he'll come to his senses this way. It's probably the only way he will, so stay strong.

Liz, there are more stories out there than you would believe. My husband is staying at a lodge because we live out of town. He told me the other day that there were several couples there but a lot of them do not have meals together. (they sit at separate tables during meal time) My husband has snapped at me and I will say I have snapped at him. Not often, but yes it happens. If I had a man who drinked after all I went through with him, I would be so upset with him and probably leave too. Take care, Be careful of your health, perhaps join a group for support. Carol..

Liz, you did everything and then some to be supportive of Rob and don't for one minute think that anyone would think you're not a strong or caring person. Truthfully I'm amazed how patient you've been and how much crap you've put up with. You're not responsible for his bad choices - nor can you choose to survive for him. You also deserve to be happy and need to think about yourself at times.

I admire your loyalty but enough is enough. You find your own road and take our best wishes with you. I hope you will stay in touch. You're one hell of a caregiver and I know that better times are ahead for you.

Regards JoAnne

Yesterday i spent the whole day with my daughter and Grandaughter.I returned feeling that her little body had breathed the life back into me, hearing her call me Nana for the first tme lifted that lead weight that has been round my heart for the last few months,and tomorrow i am having my youngest Grandaughter Josie for her first stop over,so my son and his partner can go out to celebrate his birthday.Both the children bombarded me with requests for babysitting dates but i was very reluctant to commit until i know for sure Robin is not going to ask me to go back.I heard from his sister last night that he didnt make the doctors appointment on Tuesday and my heart sunk again,but this morning the sun is shining and i am detemined until i get a call saying please come back, i need you,that i am staying where i am.He hasnt picked up the phone once not even to make sure i got home safely and pleas from his family to get in touch have fallen on deaf ears.So tomorrow i will be up to my ears in baby talc and nappiesand i will just continue to do the same as always .....live each day at a time.

God Bless you for ALL your support,and i hope i can still be a usual member of this forum.

Liz,

You're experience is just as important as the ones that had the cancer Tx or the children or siblings or the parents. That's the value of this site; the combined experience and wisdom of all affected by Oral cancer. Just think of all the future people who will benefit from your knowledge. Do not let that go to waste.

Liz,
Can support your decision anytime.
This is not a one size fits all disease.
Please continue to post, many here can benefit from your experience, as David said.
Maggie