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.