Crying times

And yes I did have a feeding tube but thankfully, never needed it. The Rad. kept telling I would and even pushed me somewhat to use it 3/4 of the way thru but I was determined not to if I could help it. Anything I or any of us on this forum can do to help you, yes we will be there for you.

Just remember that it takes a while, keep a postive attitude, and get any exercise you can stand to do. And drink lots of nutrition!

Suez39 said:

Supplies?

I need to shop this week and stock up on suppliees. I've heard many people mention "Magic Mouthwash". Can you buy it in the grocery store? I looked around and could'not find it. Also I bought Carnation breakfast essentials. Only 130 Cal per serving. Does ensure taste good? I can swallow alittle still but having difficulty.Looked up liquid hope on Amazon and they don't have it. Tumor getting bigger I think. Thank you Dean and everyone for being there for me. Just want to get going on these treatments.

Hi Suez39 -

You will need a prescription for the "magic" mouthwash.   A pharmacist has to make it up from 3 to 4 ingredients.   Mine was prescribed by my radiologist.

The Carnation Breakfast that most refer to in this forum is VHC  (very high calorie).  It is different than the Essentials.  It's Carnation Breakfast VHC.   Boost also has a VHC.

Some people like Ensure and/or Boost, others hate it.  If you can't get any free from the hospital/clinic to try, I would start off buying the vanilla flavor of Ensure Plus  (it has more calories than the regular Ensure).  It does come in 5 flavors.

You might want to look up some recipes to make some smoothies.  I did not make any but many on this forum have.

Thinking of you.

Jan

Hi Suez,

Something else I thought of. My cancer center recommeded Calendula cream (most drug stores carry it Boiron Brand) slathered on every 4 waking hours front and back, and then Aquaphor ointment at night for treating the radiation burns. I had great success with it. I got pretty pink and very sensitive, but never had open sores and my skin returned to normal within 2-3 weeks after treatment. I also cut the necks out of soft cotton t shirts to wear daily or the spahgetti string cotton camisole shirts, especially by the third week. (The radiation techs did not make me change into a gown as the  I would just pull my tshirt past my shoulders for them. And I bought a soft strapless bra to wear as my bra straps would graze the tendor areas around my collarbone and it was intolerable. Hope this helps!

Nancy

Suez,

Everyone in this thread has given you some excellent advice, so I am not sure I have too much more to add.

One thing I will say is a lot of this treatment is a mind game - so you have to get your head in the game to survive it. At the worst of treatment, which never got above a 7-8 out of 10, I would imagine how wonderful the summer was going to be, how great a nice relaxing vacation would feel, or watch cooking videos on YouTube. I had a lot to cry for, which I did quite a bit. You have to prepare yourself that it is going to get worse before it gets better - knowing that it WILL get better. They don’t do these treatments if they didn’t think we’d survive and potentially be cured.

For me, my body became something that just needed to be pushed through the motions - drink the shake because its medicine, drink the water because its medicine, take the chemo because its medicine, take the rad dive because its medicine. It gets very dissociative after a while, and I will admit to feeling like I was floating outside of my body at times. This went away very very quickly after treatment was done, and I am happy to report they couldn’t wipe my smile off my face permanently.

Sending good thoughts,

John

Suez39 said:

Supplies

Thx Jan for your response. I will see if my dietician has maybe some samples for me. I saw her once n she just gave me papers on what foods I could eat which didn't help since it's difficult to swallow now. Peg tube supposed to be done next week. Ugh...Hope they explain real good how to use it. Kinda nervous about it. 

Thx again

Suez

I was VERY scared about getting and using my peg tube.  Most people have NO trouble at all.  I didn't have any problem and I've had two now.  I'm still using one  .    The insertion site will probably hurt a bit for a few days after you get it.   It's VERY easy to use.

You can buy Aquaphor at most drugstores.  It's greasy ........ you'll want to protect your clothes.  I know many have problems with burns from the radiation but I had very little.  My skin turned a tiny bit pink and that was all.  Even when that happened, the radiologist and nurse got on me about using the Aquaphor.  

Hello Suez39, I too was freightened by the prospect of the tube insertion. You may have had this done already, but for those of you who have this looming on the horizon, it really is not that bad. They do sedate you and all you will feel is a slight tug. For the first few days it will be painful at the incision site, but rely on your pain meds for that. This will ultimately be what gives you a leg up when you are not able to swallow enough liquid to remain hydrated. I did resent the tube and all of the concurrent maintenance, until I finally used it in earnest. This whole treatment and cancer world is totally removed from our usual self possessed way of living. You become so dependent and, as JAL23 says you do become removed from yourself, become dissociative. I know I got really good at going into my head during my rad treatments. Then it was all over and now I am 15 months post and feeling great. As my brother said to me when I was fiirst diagnosed with HPV related tonsil cancer and being scheduled for big treatments "You've got to batten down the hatches." You will get through it. You've got this.