Hi. We are now in the single digits. Nine rads left and one chemo. I am in awe of how well my husband is doing. Still swallowing! No pain Meds! Just getting the mouthwash today. We walk every morning and he naps in the afternoon. I know that he has to deal with getting those taste buds back and saliva but he is so determined to heal. He has a trainer/nutritionist lined up when he has the energy to drive back to his gym AND he is talking about a new car. Now that is a good sign. Thank you all for keeping my spirits up too. I am so grateful. So onward and upward.
How great that your husband is doing so well!! And that his spirits are up too! That really means a lot. I'm sure your excellent care giving is a large part of his success. So kudos to you, too! It is so encouraging to others to see how possible it is for things to go so well. Thanks for posting such a positive update!
That's really good he's going so well this far into it! If things get tougher, though, make sure that you have pain meds available if he needs them. If he is stubborn like my husbard, you may have to remind him that his first duty is to remain healthy and hydrated enough to complete the protocol as close to schedule as possible. Better to do so without drama (e.g., a hospital admission) even if it means pain meds for a bit. I want to share with you that I did get scared when he couldn't drink water without the BMX - that was at the very end of radiation. The last week of radiation and the week and a half following were the worst as the dose is cumulative AND it takes a few days before it actually hits.
This information on the timing of the worse misery helped me tremendously when my husband was treated - I could reassure him and myself about it - yes, it sucks, but it will get better.
Thanks Maria, we do have pain meds here because he was taking them at the start of the treatment because he had a constant earache when the tumor was pressing on a nerve. When it shrunk he was able to get off. He was taking tylenol constantly before treatment and oxycodone at the beginning because it hurt when he was lying down. He is not on any pain meds now because his ear does not hurt. He says that his throat hurts a bit when he swallows but is not taking the pain meds yet. He is drinking 2 quarts of water per day. I put out 4-6 16 ounce bottles of water and he lines up the empties at the end of the day. He is taking a great deal of water because I have been Nurse Ratchet about water. I do expect that the last week of radiation and the few weeks after the treatment will be the worst. I am prepared. He does not want to talk about it yet and says that he will deal with it when he has to. That is his way of coping. I am just grateful that he has gotten this far in reasonable shape. So if we need to do the pain meds, and I expect we will, then it will become part of our routine again.
Congratulations on the clear pet scan this June. I cannot wait for that to happen for us.
Amazing. He's doing a heckuva lot better than I was at that point. Congrats to you both.
And then there were 8. Your husband is doing great!!!! You are a terrific caregiver. I need you to be my caregiver if I ever get this terrible disease again. Lining up the water bottles and and watching that they are drank every single day helps. Im so sorry to say that now is when everything will get more difficult. The last 2 weeks and the first 2 weeks of recovery are the hardest. Thats when I lost my voice.
I love reading your weekly updates! When there is a patient who gets thru it relatively easily, it gives others hope. Its encouraging to read positive things instead of all the scary stories about how hard it is. Thanks for sticking with us and posting.
Keep up the great work!!!
Ellen:
It sure is inspiring to read how good your hubby is doing. It's a whole lot better than how I did. I pray that things won't get too bad, and that he'll be able to keep his wonderful attitude throughout his whole treatments, and afterwards - that really helps a lot. Keep us informed on his progress. I'm sure reading this encourages other newcomers and those who are at the stage he is, or just beginning.
julieann
Thanks to all of you. The forum has sustained me through this and offered so much support and great information. As the nurse I am prepared for this to become more difficult for the last treatments and several weeks beyond. I just keep thinking that as bad as it might get, it is part of the road back because he is no longer in treatment. He keeps telling me (since he still has his voice) that he will deal with whatever happens but wants to think positively. That is surely smarter than stressing. That is my job. So we will keep lining up bottles, slugging VHC and trying something new to eat whenever we can. Wish I could hug each of you
Christine. You WILL NOT get this dreaded disease again. I wish I could meet you one day just to talk not to be a caregiver. Take good care. Until our next posts
Thanks Ellen, you do make one heck of a great caregiver!!!!
It would be great if you could make it to the OCF walk in Sept. I hope to see lots of OCF members at Susan Lauria's NJ walk on Sept. 24th. This is the 4th year she is putting on the walk. It is in the honor of her brother, David who sadly lost his battle with OC. If you or anyone else is planning on attending please make sure you let me know.
http://www.oralcancer-screening.org/events/index.php?com=detail&eID=95
I would love to be there but I am not sure what my husband's health will be at that point. I live in Vermont and NJ is a long way for me. If he feels well I will try to come. It would be an honor to be there among all of you heroes. In the meantime I will keep visiting. Take good care Christine
Extraordinary job you have both done! Keeping the hydration, nutrition and spirits up is 95% of the battle. Good for you. And when you get to single figures there is an element of "I can get through no matter what because the light at end of the tunnel is in plain sight"
Of course there will be other issues when the radiation is all over and the first PET scan is clear and you will both have to start looking to the future again (although talking about a new car is a positive sign). But with the attitude you are both showing, this will be dealt with in a pragmatic (you) and stoic (him) way too.
Alex and I experienced a weird sort of anticlimax on last day of radiation which took a few days to get over as we realised the end is not an actual point in time and there is ongoing "stuff" around rehabilitation that needs attention. Our first clear PET was cause for celebration though.
Karen,
Thank you for your insight. I know that the end of radiation and chemo is one phase of recovery. At least he will not have to be at the hospital and lying on that table. The treatment is so important but so difficult. I just cannot imagine how challenging it must be. He has been so courageous as I am sure that all oral cancer victims are.
It must be strange and eerie to begin to come back from all of it. I do agree that there will be some adjustments in the months ahead but we will adjust to the "new normal" and do the best we can. I do like the end of the tunnel and the light.. I will be ecstatic when we hear that the PET scan is clear. That will be a joyous day. I will continue to get encouragement and strength from all of you.
I sincerely hope that you and Alex can begin to enjoy your life as we hope to once again enjoy ours.
Best,
Ellen
Ellen it is great watching you guys fly. Diagnosis is similar and initial dates, we've got 31 to go. I made my Dad a leather wrap bracelet with 35 amethysts in it, he wears it every day and want me to create a bead spacer so he can knotch off one after every treatment. every trick, no matter how small, helps!
You must be SO tired, hope you are getting some time for you.
Hi Caco. I am tired but energized by the fact that the treatment is nearly done. That bracelet is a fabulous idea. Wonder if I should something cool for my husband to represent his journey. I want to get him a triumph gift. I try to take care of me: massage, lunches with friends and my haircuts. Hope all is well with you.