Not sure what to do about the fact that I am here and know what will probably happen for my husband, but he does not want to think or talk about it. On the one hand I want to be prepared as his caregiver but he is just living in each day and is also very frightened of the prospects ahead. We are on treatment 16 out of 35. Second chemo next Friday. I suspect that he will be feeling lousy very soon. Right now, dry mouth, weird taste buds and lots of mucus. He is still eating but we are supplementing with Ensure and I will probably try Carnation with the high caloric. Any advice.

What exactly do you mean by "what is coming up". Are you thinking about the treatment effects, or are you thinking longer term?

Donna

Hi Ellen, I am not sure either what you mean by what's coming up, but I suppose you shouldn't think too negatively and take each day as it comes, however be prepared for things to get worse before they get better. The bad taste and dry mouth will get worse for a while then should slowly improve. If they offer you the nasal feeding tube or PEG take it. Martin refused and in the end he was skin and bones, he weighed 9 stones (for 6"2), he was so weak he slept 20 hours a day. He eventually accepted the tube and it was a God send. The nasal tube took the pressure off the eating. I could feed him 4 times a day and he didn't taste it and didn't need to swallow. Before it got to that we managed to conceal the horrible taste with maple syrup. For the dryness, you are going to carry a bottle of water around with you for a long while. If the dryness gets bad in the nasal area too, it's worth asking for a nebulizer. I know it help Martin even temporarily. Otherwise keep strong and if it helps take things as they come, and if your other half doesn't want to talk about it, it's probably his way of dealing with it, but make sure he knows that you are there to listen if he does want to talk. Good luck.

As queen of the anticipators, I had to learn to let go and live in the day by day. I realize you are a caretaker and I was a patient.
But some of what you fear may not materialize.

I think it sounds like he is doing fairly well actually. Keep eating solid food, supplementing with Boost, etc (Carnation has more calories) as long as possible. Keep up with the fluids. Have all the pertinent phone numbers handy in case.

I took my treatment away from home, and my husband had a job to work, so I had two sister-in-laws and a friend alternate time with me. They always encouraged me to take walks (walked with me actually). I took advantage of the classes held at the cancer treatment center, like yoga, (I was bad at it as it was 30 years since I had done any), meditation (both sacred and secular), and a combination of laughter & yoga. These things kept me somewhat occupied.

I know you have to get the supplies and food, so you have more to think about. I hope you can take some time for yourself to have something outside of being a caretaker. It is hard, but hang in there. It was hard for me to think about chemo, too. Your oncologist should have given you things to watch for, etc, when to call & so on. I was on the six chemo protocol instead of the three, so each of my six were shorter. Nevertheless they did not agree with me at all. I learned to take something for constipation before we started chemo, which helped for that side effect.

I'm sorry I don't have a magic solution for you. I wish I(we) did.
Best,
Anne

Do the one day at a time thing. Fill his pain meds though you may not need them, have magic mouthwash, have plenty of boost and ensure on hand and mix up bottles of the water, baking soda. that's pretty much all you can do. things may not get as bad as you expect. They will likely get worse but every one responds differently... good luck! Hugs!

My husband didn't want an excess of details, either, but I anticipate a lot. My method of coping was to be as prepared as possible by reading journal articles and following the posts on this site. I also assembled a list of volunteers for help with various aspects of daily life, and sent out an update e-mail to friends and family (I always had him proof this first). As it turned out, we needed less help than we thought, but everything was in place if it was needed.

So, to answer your initial question ... I probably thought about things too much, and he too little - but as a team we have managed fairly well!

We are all different. Some of us (patients and caregivers alike) want to know as much as we can, spare no detail and some are totally opposite, sick my head in the sand and tell me when it's over. I have also observed that seldom (if ever) do we have both the patient and their caregiver post on this site.

Hi again,
I am sorry that I was not clear. I guess what I meant by "what's coming up", I am thinking about the immediate. The next half of treatment and the three or four months following the treatment. From what I have read from this site some of you have had very difficult experiences and it has made me aware of what "might" possibly happen. I do not want to be negative but just prepared. You are all so right, everyone is different and my husband has been doing relatively well so far. Still eating some foods and his energy has been reasonable. I think that the next chemo will be more difficult and the pain will come but we have things lined up with friends and a place to stay that is much closer to the hospital for the last two weeks. We are currently traveling 2 hours for 15 minutes of treatment. Friends drive him there and I pick him up when I leave work early. I plan to be with him for each of the three chemos and will work from home when he needs me. I probably should take the lead from him and just take each day. I just want to make sure that I have everything "lined up" that we need.
What about long term effects? What kinds of things can happen?
David, I am so impressed and glad to hear that you are riding your bike 100 miles a week. My husband went to the gym everyday and I know that he will do that again.
Thanks so much for all of your comments.

Ellen,
I think your plan about staying closer is good idea, although it is great to be at home too. To me the pain was the worst for about two weeks after treatment was over.
Anne

Ellen,

It all went downhill for me after my 2nd bag of Cis. I didn't walk out of that dark tunnel as we call it until around my 3rd week post Tx. During this period the pain increased, the nausea was relentless which gave way to less consumption of both VHC and water which then led to dehydration which led to more nausea and of course the BIG C, constipation which was probably the worse pain of all. Once this started so to speak it was like a snow ball rolling down a hill. Towards the end of this period I also started in the thick muscos stage which gave way to the dry mouth stage. The fun never stops with my worst time coming the few weeks post Tx.

So if I had to do it all over again....I would make sure SOMEONE FORCED ME to drink at least 48 ozs of water and 3000 cals EACH and EVERY DAY. Easier said than done but I really think I was my own worse enemy during my Tx and I also didn't have the huge benefit of the wisdom of this site until I was out of my tunnel.

Ellen,

As a patient, I went with "Hope for the Best/Prepare for the Worst." Treatment was a struggle but I never stopped walking or caring for my pets as usual, never needed to be hospitalized during treatment (other than the surgery part), and was able to at least mitigate the worst of the side effects. It can be done! And the best piece of advice I got was, "Do what the doctors tell you to do." So I kept walking, I made sure I got enough calories, I started taking painkillers before I really needed them, I made sure I reported anything weird that was happening and stayed ahead of the side effects as best I could. Some things can't be altered, like the horrid mucus and then the dry mouth, but much of it can be, like the nausea.

Taking each day as it comes is the approach that worked for me, for sure.

Hi David,

Well that is what I expected to hear. I don't think that my husband will want to hear it but I will prepare for the entry into the tunnel. He does have a tube and so I hope to get more calories into him that way. He has been drinking lots of fluids but I know that he has to do more after the chemo. He did fine last time but that was only the first. I will do my best to keep him hydrated but it is hard to be in the role of caretaker and nag at the same time. I thank you for your honesty and will brace myself for the days ahead.

Ellen

Ellen,

The tube can certainly be useful as the pain increases but make sure he swallows each and every day to keep those muscles active. They have the ability to loose their "memory" quickly and some patients never regain their use post Tx.

David. That is definitely the plan. He really does not want to use the tube much for that very reason. I know the docs are concerned about his weight. Did you lose a great deal? Thanks for responding so quickly. It helps me to have the connection.

I was a bad patient so don't go by what I did, just what I say do! lol I lost appx 30% of my total body weight and couldn't afford to loose a pound. I was scary thin at the end and it took a good year before I could even think about gaining a pound no matter what or how much I ate. Now I am back to being able to gain weight as fast as you wouldn't want.

Ellen - my husband found that my blender contoctions were generally easier to get down that the canned products - the difficulty with the canned products is that they leave a residue in the mouth. Ugh. See if you can get a referral to the nutritionist so you are sure he is getting the nutrition he needs. I use both dairy and soy-based products, with a packet of Carnation Breakfast Essentials, and some extra whey power - but review with your doctors!!!
Besides general health, weight loss is an issue because if you lose too much, the radiation mask will not fit properly, and they may have to replan the IMRT.
When my husband was going through his therapy, I thought in terms of a week at a time - and I marked on the calendar each radiation and infusion - one more down, less to go!

I agree with everyone above for the weight loss. Martin also got scarily skinny. He got so weak that he fainted in the kitchen while trying to get the porridge. He fell back, the kitchen table broke his fall but he broke his ribs on the radiator. He came to on the floor and felt some liquid on his body, but he was so dazed he couldn't see. So he crawled back to the bedroom, grabbed the phone and called me on speed dial. He thought he was bleeding but as he was naked he felt too embarrassed to call the ambulance (silly). Anyway I interrupted a board meeting at work and rushed home, and the liquid was milk not blood. Anyway I helped him get dressed and he had his ribs X rayed. All of that because he couldn't eat towards the end and refused the tube for so long. So I would still use the tube, but also as David says still swallow to keep the muscles active. I had some high calorie powder I used to try and sneak in, but he always knew when I did. Dairy products are the best for weight gain too.

Thank you everyone. We were weighed today and his weight is holding. He is thin but still reasonable. We are only halfway through treatment so it is imperative that his weight stays stable. We will use the tube but swallow too. He eats a ton of dairy seems to appeal to him at the moment. I will keep nagging him to drink and swallow. Wish us luck at second chemo on Friday

I wish I could have "forced" Ron to drink more water and eat more cals but some men are just a tad bit hardheaded. Ron did very well with his Radiation, he didn't have chemo this time, but had it when he had Non Hodgkins. Different forms I'm sure. But he drove himself to and from radiation 45 mins give or take 5 days a week. Worse that he hated was of course the burns in his mouth but being tired all the time upset him because he is always doing something out in the yard when the weather is nice and he had to sleep most of the day and always apologized to me for it and I didn't care at all. I told him it helped him heal so do it. But doing the baking soda and salt rinse is a good thing and yes making sure eating and drinking, Ron had a feeding tube BUT he pulled it out twice! And the final time he would not go and have it put in, it hurt his throat more. And yes, not bad the first week or 2 of radiation but by the final 2 wks it was bad and yes 2 wks after the burns still burn. Around then the turn around should start happening. Ron lost a ton of weight during radiation because he wouldn't eat anything, and couldn't he said. I was sooo worried about him, I swear he looked like a starving person and I was so scared for him and his health and his heart, cuz you starve your organs when you do that. I was so beyond myself I called his Dr's office and cried for them to help me get him to eat, he went there and all it did was make Ron mad that I had called the office. They must be used to seeing this happen and just made sure he was OK. It's damn near scarey to see your loved one go thru this and look like that. BUT he got better not fatter but better! I came on this website to "listen and learn" from everybody's past and present experiences and Ron sounds like your husband. He didn't want to know, BUT when he said this or that was happening, I told him I knew it would and it's OK it is supposed to happen. So just keep informed and this way it won't be a surprise to you when things happen to him and you can explain to him it's OK, it is expected. Good Luck!!

Good luck for Friday's treatment.

Ellen, hang in there! Keeping the weight stable is a big accomplishment. Keep up the good work! Good luck with the chemo on Friday!

Ellen: I'll say a prayer that everything goes okay with your hubby's chemo Friday. Good luck with keeping the weight up - that's so hard, but it can be done, as you have read from other Forum members. As time goes by, and hopefully things get better, you'll have stories to tell like the funny one Cecilia told about her husband, Martin. Hope hubby keeps eating by mouth, even a little bit every day because it does strengten the muscles he uses when he swallows - that is so important.
julieann

I wanted to know everything that was about to happen and no bull from the Drs. That way I knew and didn't think about it but took it as it happened. I wanted to know for the simple reason, I didn't want to awake to any surprises unless it was something that happened while I was out in La La land.

Whatever the doctors tell your husband to do as far as swallowing exercises, jaw exercises, Aquaphor on radiation site, salt/soda mouth rinses, etc. encourage him to do. I feel like that helped me come through my treatments in better shape. I drank lots of Ensure, Carnation Instant Breakfast, Boost, Special K protein, water, shakes, ate lots of ice cream and my husband made many trips to the grocery store trying to come up with things I could eat - I did not need a feeding tube because I was determined to eat/drink and not lose too much weight. Sometimes it took me awhile to get things down but I did it. Don't take it personally if your husband gets cranky when you encourage him to eat. I knew I needed to eat but I didn't feel like it and with my husband telling me to eat, it just reinforced what I didn't want to do but knew I needed to do.
It helped me to know that I would still feel crummy at least 2 weeks after treatment ended.That way I wasn't thinking that everything would be rosy as soon as my last treatment ended. I was able to taste some food about 6 weeks after ending treatment. It will get better, just keep that in the back of your mind.

To go the other way. I am still down over 70 lbs and my taste just keeps getting almost nonexistent. I force and do my best to get nourishment into this old body and then like a fool, go outside and work it back off. I have a good sweat going tight now from replacing gutter guards the storms took out. Now after another shower, I'll be ready to rumble. Good luck to your man and his caregiver. We at times just have to be hardheads.

Thanks all. It is becoming very hard for my hubby to eat. He just detests the lack of taste. Going to try to keep doing Ensure. Shakes and any food that he will eat. I am getting to more and more like nurse Ratchet. I cannot imagine how awful his mouth is but do not want him to forget how to swallow.

Wow Jim. You are a real trooper, your history is amazing. I think you are fantastic, not a hardhead. We are doing our best here and I am in awe of all of you.

For some odd reason, I enjoyed the taste of yoo-hoo during radiation. The cold drink felt soothing in my sore mouth and throat. It was as thin as water so I found it easy to drink. Give it a try, maybe your husband would enjoy it.

Christine, funny you should mention that because he likes drinks that are chocolate. I will try that, thanks.