Ed - During the Rad Tx while under the mask, my son had the option of bringing his own CD for them to play music or they would supply music in the Rad room. THey could probably also play an audio book if that helps.

Ed

Good for you for getting the mouth hole in the mask. It does not affect the mask's function of holding you in place for the radiation. Heads up that there may be temporary "waffle" marks on your face after they unbolt your mask. (They used actual bolts into the lead table for mine). Think of it as just one less thing to worry about since as Maria noted, it's important to keep your head still and in place for the treatment.

As for Chemo, I brought both an MP3 player and good books. I was not interested in watching the daytime crap on TV, although I could hear the shrieks after the DNA paternity tests on Maury Povitch from the other TVs. The Benadryl never made me sleepy enough to nap plus even if I had the beeping from the pump whenever a bag of saline or potassium emptied would have woken me up. My advice is to have someone come with you if possible. Even at my CCC, the staffing ratio is such that you are not constantly attended and little things like the beeping or getting up and dragging everything including the chemo pump and pole and bags into the bathroom are up to you to fix. I would have had to wear Depends if my wife did not come to chemo with me and one poor guy a few chairs down from me who was alone ended up pissing himself. The poor nurses do their very best but the hospitals overload them. My nurse had to check the chemo orders, call in the orders to the pharmacy, pick up the chemo, heat up the towels , hook up the IV, load up the saline, administer the Benadryl, start the potassium drip, take our lunch orders, check the chemo flow for 5 patients concurrently and still distribute our lunches. She could not abandon another patient in midstream to focus solely on me. With the exception of that one poor guy, every chemo patient had a caregiver to help out and they made it clear that was their expectation.

Charm

Taking a friend along on chemo days would be a great idea. You can play cards, use a computer, watch tv, read, chat, etc. Getting chemo is one of the more pleasant experiences of the whole treatment regime.

Best wishes!

Good luck with chemo, the mask part will likely get easier after a few sessions,.. Take care and any blessings to you.

Hi Ed. Reading your post has taken me right back to my experiences of dealing with the mask. I found the fitting of the mask pretty horrible and I was worried about being left alone while the raditation was underway. But once it was underway I got into the swing of it and found I could let me mind wander in quite an 'out of mind' way. Lying so still is a bit strange as after a while there is no sensory perception telling you where your body is in space, so I felt like I was floating! The mask did feel tight to start with and left pressure marks on my face for a few minutes, but it felt more comfortable as time went on. To start with I just focused on my breathing. I hope it goes OK for you. Trying pre-thinking of some pleasant thoughts to focus on. Sally

[quote=Charm2017]
As for Chemo, I brought both an MP3 player and good books. I was not interested in watching the daytime crap on TV, although I could hear the shrieks after the DNA paternity tests on Maury Povitch from the other TVs. The Benadryl never made me sleepy enough to nap plus even if I had the beeping from the pump whenever a bag of saline or potassium emptied would have woken me up. My advice is to have someone come with you if possible. Even at my CCC, the staffing ratio is such that you are not constantly attended and little things like the beeping or getting up and dragging everything including the chemo pump and pole and bags into the bathroom are up to you to fix. I would have had to wear Depends if my wife did not come to chemo with me and one poor guy a few chairs down from me who was alone ended up pissing himself. The poor nurses do their very best but the hospitals overload them. My nurse had to check the chemo orders, call in the orders to the pharmacy, pick up the chemo, heat up the towels , hook up the IV, load up the saline, administer the Benadryl, start the potassium drip, take our lunch orders, check the chemo flow for 5 patients concurrently and still distribute our lunches. She could not abandon another patient in midstream to focus solely on me. With the exception of that one poor guy, every chemo patient had a caregiver to help out and they made it clear that was their expectation. [/quote]

Wow Charm,

Our experience was so different. Bill had treatment at an Oncology Center and we could not have been treated nicer. In fact, the caregivers/companions/drivers were encouraged to go home or run errands, in other words...take a break. I did stay sometimes to help Bill with his "lunch" of supplement thru his PEG but otherwise he was in terrific hands and there were plenty of nurses to help and they were not overwhelmed at all. He was made to feel very comfortable and all requests were met promptly. The surroundings were bright, pleasant, and welcoming. Once I got over the shock of what we were there for, I felt very blessed.

So sorry you had such a hard time, but I want people to know that they might have an option where they receive chemo/rt treatments. We were under the watch of Moffitt CC in Tampa but received treatment here at home with their blessings.

Deb

Deb

My CCC, Georgetown Lombardi Cancer Center is just part of a hospital building on a larger University campus. Space is at a premium and ever since the Jesuits sold the hospital to MedStar, there have been staffing issues as MedStar optimizes profit by reducing staff/patient ratio. I had heard that many offsite oncology centers offer a more pleasant experience. I should have made it clearer that because my wife accompanied me, I did not have a hard time at all. It was much more pleasant than the radiation treatments.

Jamos

It would be great if your chemo experience is similar to Bill's. My advice is still to bring a caregiver along to see what the staffing ratio per patient is the first chemo appointment. Things were pretty much the same, all eleven of my chemo TX even though the last three were 18 months later than the first eight. Perhaps my chemo experience was unique to MedStar.

Charm

My sister-in-law and niece purchased a Kindle and book credit for my husband to use during treatment - it worked out very well, and provided a nice source of interaction with the nurses, techs and doctors. He also had his Ipod for music.

Thank you all for the support and good ideas. I have ended up with the rad txs and cisplatin. Both started Monday 8/20. The mask has turned out to be less distressing as I have adjusted to it, and Ativan and relaxation exercises have helped such that I have been fine in my two treatments so far even without the hole being made in the mask (I will keep that as an option if things change). The chemo has not worsened my tinnitus so far, still watching and waiting re: signs of neurotoxicity. The antinausea drugs have worked wonders: not a bit of nausea, and still eating normal food for the moment. One "hiccup" to tx so far is literally that: recurrent, protracted hiccups. I will start a new thread about that. Thanks again to all for your support and ideas.

Good luck throughout the Tx and be sure to use this site as often as you wish.