Just starting out!!

Hello everyone! Thanks for all the encouragement. Mask fitting was this past Monday and he did great!  Said he didn’t feel claustrophobic at all. Radiation and chemo starting Wednesday. I think we’re all stocked up on supplies, but I’m sure I’ll be checking in for suggestions as time goes on. It’s odd how you can feel frightened, yet relieved at the same time. The limbo of waiting for treatment to start has been excruciating. We just want to start in order to get done!! My husband has met with his speech pathologist, and has various swallowing and stretching exercises he does three times per day.

 I agree, it’s so interesting how various institutions differ in treatment protocols. My husband’s team advises no feeding tube unless absolutely necessary. They want him to continue swallowing to preserve the muscle function. So, fingers crossed that he can accomplish this. He’s very determined that he wants to. 

For those of you that had the chemo......what was that like? Were you extremely nauseated, or sick feeling, after treatment? I think I’m more nervous about that part for him :(

Seems like there are a few here just starting out, so my very best wishes for all of you!!

Good news about the mask. 
Once a plan is set into motion you do feel better, less out of control knowing something is being done. 
This is eminently curable don’t forget. 
And don’t worry about the lack of tube provision. A nasogastric tube is easily done should it be required, but please don’t let him struggle. If it’s taking him all day to painfully get down half the calories and protein he needs to heal then it’s time to insist on one. It’s not his team that’s suffering

Best foot forward and good luck. 
Thanks for the update. 

Hi

I has 2 of the planned chemo sessions ,mine were in day 1  day 21 and the other was cancelled as my neck lump had gone and I in discussion with oncologist took the decision I had handled the chemo so well why push our luck ,there was the possibilty of develiping tinnitus and neutropenia if we didnthe 3 rd. the overall percentage the chemo gives is in re region of  4/5 % .I read uo and had family conversations plus asked my oncologist if i was his  wife’s what would he recommend to do. 

I followed the advise all way through treatment and wasn't sick at all ,only on day one about 0200 inthough umm I could be sick so gitbuo and took the relevant tablet Anastasia all was ok.  Best advise is keep him well hydrated . worst thing  for me was in chemo days because if all the fluids the mask feltbeven tighter but the next day all was ok. Plus keep off shellfish during treatment with chemo there’s a kniwn reaction.

feedingbtube i had one week 4 and by week 3 of recovery I had it out. Nutrition is vital during treatment so like @Beesuit says don’t let him suffer. 

Kerp in touch Hazel x

Hi

My hospital also didn't fit any feeding tube before treatment but advised there was a good chance I would need one going through treatment. I didn't. I somehow managed to lose just 5lbs during the treatment period and they decided that a tube wasn't necessary. I agree. I always assumed that the approach to treatment would be almost identical across the board and became quite enlightened once I found this forum and different experiences.

I had Carboplatin week 1 and week 5 (lesser known form of chemo that Cisplatin because I have slight tinnitus). I took the anti sickness pills as told and never felt sick at all, just tired for a day after treatment (and I mean run over by a bus tired).

All the very best.

Tricia

Hi Tricia- so happy to hear your successful story, and that you didn’t require the tube! That’s awesome! Also glad to hear you got by without any nausea....maybe he will be that lucky! Fingers crossed! Thank you for responding!

Elizabeth

Hazel- so glad to hear it’s possible to get through without any sickness. I will be reminding him about staying hydrated!! And to keep up with all his meds!! 

I will definitely be mindful about the nutrition aspect that you and @Beesuit  have stressed! I know it’s so important. He is very determined to keep swallowing to avoid the tube. We have already stocked up on the high protein, high calorie supplements that the doctors recommended. Here in the States, we have to purchase them on our own , so there are a lot of choices- that can be overwhelming. 

Thanks for all the great advice from EVERYONE!!!

Wow Chris- I just read your complete profile! You’ve been through an awful lot, and sounds like you are doing so well! So encouraging for those new to this! Gives so much hope! Thanks to all on this site who are “done “ with everything, but continue to spend much time and effort supporting others!!!

Hi no problem glad to help out, as a rule of thumb re the food supplements go for the one side that are most calories for least volume of liquid mine were Ensure compact 125 mil gave 300 caloieoes but it’s really trial and error

keep in touch Hazel x