Proton Therapy

3 Posts | Page(s): 1 

Proton Therapy

by CKeeley67 on Sat Dec 17, 2016 03:33 PM

Quote | Reply

My husband has been diagnoses with SNUC.  The oncologist feels that Proton Therapy is the only treatment for him.  It is 3 hours away 5 days a week for 8 weeks.  We will be moving for that period of time and living in a hotel.  Any advice as to what to pack?  Money is tight so trying to avoid running to the store to buy items I have at home and could take.  Any and All advice is appreciated.

RE: Proton Therapy

by Wifeofmichael on Sun Dec 18, 2016 02:58 AM

Quote | Reply
The best of luck to you, we've been there! We moved into a hotel for my husbands 8 weeks of radiation for brain cancer. It got pretty simple, eat, be ( sort of) dressed for treatments and consults, the most basic errands then back to the hotel. He just about lived in his jammies and me in hoodies and comfy pants. And in our case, a lot of insurance and financial aid paperwork to do. I brought all kinds of office and mailing supplies, lots of stamps, I had our mail/ bills forwarded and I brought a portable copier/ scanner, the best 80 bucks I ever spent. I brought a big jug of laundry detergent, dish soap and dishes, cups, glasses and silverware. I hung laundry on a rack to dry rather than pay for a dryer. He wanted his own pillows, he had his pile of electronics and chargers and I had mine. I'm a big reader so my kindle was my best friend. Don't forget the personal creature comforts because living on a motel is no fun and we both got terribly homesick. The weather changed while we were there and we forgot to bring warm clothes so we hit the thrift store for jackets. what he ate or could eat changed a lot but I still brought all the groceries from home that I could. Our leftovers in the freezer that I loaded up and packed in the little fridge and in our cooler were better comfort food than I ever imagined. I had no problem living on snacks and junk, lots of lance cracker packs and beef jerky lol. Keeping him fed was very complicated and time consuming because of his treatments so I just had to snack my own way along. Gained 20 pounds but I took it back off after we got home. Toiletries and vitamins are costly so I loaded up all of those that I could from home as well. It seemed so unfair, to be given such a dismal prognosis for him and have such a load of new things to learn. I was switched on and in high gear preparing for this move to his treatment site but once we landed at the hotel and got into a routine, all the down time and lack of things to do was just fine. I needed lots of quiet time to digest our new lives on planet cancer and he was exhausted from the rad. Take good care of yourself, you sound like you're already taking good care of your guy.

RE: Proton Therapy

by MrBrightside on Wed Dec 21, 2016 09:01 AM

Quote | Reply

I did proton therapy earlier this year for 6 weeks in Boston.  I'm in CT about 2.5 hours away and decided to take the train most of the time and family gave me a ride maybe once a week.  I was lucky in that Amtrak could get me very close and the Boston subway took me to the hospital only two stops away from there.  Despite it costing a little more than driving, I preferred the train as I could sleep up and/or back and rest more during my treatments.  While I certainly appreciated my family's efforts to drive me and their company, I found the train to be peaceful and relaxing.  It was also good to sleep in my own bed at night and our family life wasn't very disrupted at all.  I typically left after my wife left for work and the kids left for school and was home by mid to late afternoon.  There was also a small discount on the train costs with a letter from my radiation oncologist.  You likely don't have the train option but I would consider it if you do.  I also don't know what your husband's mobility will be during the treatments or the timing of his treatments.  While it seemed so overwhelming at first, I quickly came to understand that my appointment times and the staff were flexible enough to still get me in without any stress even if my train ran a little late.  They were great to work with.

If you do need to stay there, and it sounds like you do, you may want to inquire with the treatment hospital and be sure they don't have special discounted housing available for patients and their spouses from far away.  I don't remember the name of it, but MGH in Boston had something like this which was sponsored by a pharmaseutical company and run by volunteers.  It offered rooms with basic meals or at least dinner included and it was homemade.  Availability was limited so you had to inquire and see if it was available.  There was also the social aspect of mingling with others also there for treatment as opposed to just seeing each other 24/7 for weeks on end!  Even if it was only for part of your stay, something like that could break up the monotony of a hotel stay.  I didn't need it but I did look into it.

Good luck to you and your husband.

3 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.