Help future cancer patients!!

BrandyB · October 2010

I'm on a committe to help build a cancer center in South Florida. I am a TNBC survivor and I was treated at MD Anderson. I'm hoping to draw on my experiences at MD Anderson to help build a really wonderful cancer center here in West Palm Beach.

I'm posting to ask if you have any suggestions that would be important for a cancer center.

iodine · October 2010

Free Valet parking

iodine · October 2010

Free Valet parking

Ang7 · October 2010

Hi,

I don't know if you have much information on Penguin Cold Caps but my oncologist let me try them with my chemo and I was able to keep my hair. Her office did not have a freezer to store them so I had to bring them with me in a cooler on dry ice for each treatment. It would be great to have a cancer center that had Cold Caps in the freezers that you could use during treatment...

BrandyB · October 2010

Thank you guys!! I'll add those ideas to my list.

Anybody else? Was there something special about the place you were treated that made you feel that you were in good hands? Was there some system in place that made things run smoother - therefore, less time spent in waiting rooms?

BrandyB · October 2010

Just a friendly Bump.. Smile

Abbey11 · October 2010

Brandy,

In my experience, I have had great docs. They've all been caring and have taken lots of time to answer my questions...once I got into see them. But, getting in has been the hard part. Phones go to voice mail, I get put on hold, I am told that there are no appointments for weeks. The support staff at the hospital where I was treated is terrible. So, I would recommend that you hire terrific support staff and train them to be both efficient workers and also compassionate to the very scared women who call. The initial contact with your center should be personal, caring, and compassionate.

I would also recommend that you have classes for patients before their surgeries. I was given very little information before my mastectomies; most of what I learned, I learned on this site. But, my husband had a hip replacement last fall and we were both required to go to a two hour hip class taught by one of the nurse educators. It was SO helpful. It would be great to give patients some idea of what to expect.

Good luck to you!

Anonymous · October 2010

Here's a few suggestions...

mental help - I have needed tons of it after my treatments were over. I still feel like I am living the nightmare.

I had great chemo nurses. They talked, laughed and cried with you. I think most of them had family members that had cancer, so they really understood.

Something to do during the long hours of chemo. When I went they had a table with a huge puzzle for everyone to work on.

The hospital I went to served a lunch to its patients. The days I was there it was chicken salad sandwiches piled with mayo. Mayo and a queasy stomach is not a good combination.

Sitting in the recliners I would get a stiff back. A massage or evena hot pad would have been nice.

iodine · October 2010

A gentle caring touch.*massage therapy?) Post op, after I walked the hall with my IV, a RN gently placed her hand between my shoulder blades and lightly scratched my back; That was the first time Anyone had touched me and not caused me Pain following a positive ultrasound of my breast. I'll never forget her and how I began to cry because Someone did NOT hurt me.

While in a big city, university hospital, NO ONE touched me with out gloves and that was ok, the nurses needed to protect themselves and other patients. But when the damn docs wouldn't get within a foot of the bed---they didn't want to have to put on gloves, I guess. LOL. Then the dang urologist consulted and never got past the door frame---$350 freekin' dollars! Even my own surgeon, let alone his flunkie residents, never touched me---gloves or no gloves. That's just WRONG. As an RN who had worked with docs since 1961, I can tell you the docs need a class on how to use physical diagnosis---which incudes touching the dang patient.

cary1 · October 2010

The university hospital I was in had laptops you could use in the infusion room to connect to the Net. That made the hours go much faster. They also had DVDs to play (with headphones) though I never used those. I would never have been able to sleep there, and reading took too much concentration. I went to all my infusions alone, except for the last one, so the Net was good company.

BrandyB · October 2010

Thanks everyone for your time and feedback. I am printing these responses along with others to give the doctor's who are building this cancer center. Like I said before it is sorely needed in this area. I also was told to wait for appointments, like 3 weeks for a biopsy!!! 6 WEEKS for an oncology appointment, etc... Needless to say I left immediately for MD Anderson where I felt totally confident.

otter · October 2010

Brandy,

When people plan something like a new cancer center, they often focus on the bricks and mortar. Physical appearance and furnishings are important, but, as you can tell from some of the replies here, the characteristics of the people who work there and care for the patients are more important.

I was, and still am, being treated at a "comprehensive cancer center" that's part of a major university hospital. The (public, state-funded) university and its teaching hospital are located in the largest city of a very poor state (poor in household income, poor in tax revenue). So, my chemo infusion center had no laptops, TV monitors, DVD players, or free lunches, much less private rooms. I was provided with the bare-bones essentials -- a fake leather recliner, a polyester curtain to pull between my chair and ones right next to mine, a bedside table for my personal belongings, an i.v. monitor, and warm blankets. I also was offered pre-packaged snack crackers and tiny cans of juice, but those were courtesy of the cancer center's philanthropic agency -- not the operating budget.

Although I might have enjoyed some of the finer touches others have described, those things just weren't considered "necessary" and I'm sort of glad my insurance company wasn't asked to pay for them as part of my treatment. OTOH, I also had very kind, knowledgeable, compassionate chemo nurses who treated me as if I was the only patient there and the most important job they had that day (which I wasn't, of course).

So, for me, it's the personnel that are the key. That's not just something you deal with when planning a new facility, though. Finding and keeping good personnel -- the ones who really care about their patients and are willing to go out of their way to show it -- takes a continuing effort.

otter

Lowrider54 · October 2010

Most of my submissions have already been suggested: Making it a full care facility - physical health, mental health, emotional well-being, nutrition and 'allowed to be loud' treatment rooms with tv's, laptops permitted and the like. A bit more secluded area for those that want quiet. Treatment chairs with heat and massage are a real nice feature - we have them at my clinic.

Treat each patient as the person they are and not just a number rolling on through. A donation area for wigs, scarves etc that is accessible and let folks have fun with the wigs - don't have things locked up - someone donated the items, they are free for the taking. Good caring nurses that are not rushed or harried is nice.

Have aftercare - a place to be able to come after treatment ends - not just for followups from the treatment but a social worker on board that can help with recovering from the devastating effects of treatment. This would be something unique and new.

A team of 'volunteers' to help with housework during treatment or rides or shopping or anything that would continue for a little while after treatment ends - it takes about 6 months to regain the brain from 'chemo brain'. Be sure to have as much information available with phone numbers and web links for food shelves, clothing outlets, prothestics, finanancial assistance, social security, agencies that will help with cab fare for getting to and from treatments.

Post info on treatment drugs - big and bold - side effects and how to deal with them. Post drug companies that offer discounts on their products and/or reduced costs. Especially post info about what to expect from a first treatment - don't limit it to chemo only, include all treatments given at the facility - in addition to the instruction day and facility tour. For instance - let people know that bulking up on water plumps the viens and makes biphosphonates have less se's.

Be sure to keep up to date on trials and the need for participants. Keep current developments posted and make a computer available for those that do not have access to one.

Make it bright and cheery and full of flowers - silks as scent sensitivity is an issue. Make it a scent free environment but don't make it smell so 'medicinal'. Heavy perfumes can make others very naseaus.

Encourage patients to donate items they no longer need when their treatment ends and invite anyone who would like to lend a hour or so of time to straighten up the magazines or just be available for a conversation with a new patient - it is nice to talk with someone who has just been through what you are about to go through.

Arrange the 'waiting room' for private space and for communicating space so those that wish to sit in private can and those that have made friends can have an conversation without feeling odd about talking.

Ok, that is my clinic and I love it - not so much the reason I am there but the care, the environment, the staff, the patients - it is really a great place if you have to be dealing with this crap.

Anonymous · October 2010

Have samples of otc products that we can try before purchasing the item, share samples of the numbing cream before they stick your port. My chemo place didn't have any to offer.

I do like, no love, the idea of volunteers to come and speak with those coming for the first time for treatments. I would love to do that.

CoolBreeze · October 2010

WiFi

lovemygarden · October 2010

Similar to the ColdCaps, my suggestion is for the ElastoGel frozen gloves and slippers, to help prevent nail damage/loss especially from Taxotere and Taxol. (There may be other chemo drugs that cause this too, but I'm only familiar with the taxanes.) These cost about $120/pair retail but each pair comes with disposable paper inserts so they can be used by multiple patients; oncology centers buy the paper inserts by the case (they're relatively cheap) so each user gets a fresh one and the skin on their hands and feet don't touch the inside of the gloves or slippers.

Help future cancer patients!!

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