What a terrible experience! My heart goes out to you...
I think that you must find another facility ASAP. There are dangers for you in a place like that especially while receiving Chemo...Just being in an ER in and of itself, it is a breeding ground for virus' and infection...Chemo nurses' are specially trained...it is all they do...They don't go from room to room with entirely different things happening in each.
The fact that Chemo can damage your veins and burn you if not properly done. It should only be administered by a nurse who is very skilled in this area, as it is her main specialty (my husband suffered a damaged vein even at a major facility). As long as the protocol of the Dr. is being followed you can get the Chemo regiment anywhere. Have your Dr.'s staff find a place for you. You have done enough of the footwork thus far...turn over the reins and make them find a place for you. There must be another facility to give you the Chemo. I know that you didn't like the Dr./or maybe it was the financial Dept. at Moffitt but maybe their Cancer Center is better? Is possible to have your Dr. agree for you to get the Chemo there and the surgery somewhere else? Worth asking...
thinking of you,
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.
Life isn't about how to survive the storm, but how to dance in the rain.
Your treatment brings back some bad memories. When Dick got BCG through his nephrostomy tubes in was in a small room in the urology clinic which is located in an overcrowded antiquated facility. Yet this clinic and hospital is one of the top rated ones in the country for Urology. We kept asking to have his treatment done at the Cancer Center where they have facilities for chemo, transfusions and I'm sure BCG. Plus the let go the RN who did the instillation of BCG and turned that function over to the residents. Dick wound up with one treatment and the left side instillation went awry and was a contributing factor in his abscess behind his left kidney. I think the MRSA was acquired at that time as that is when the problems with the fevers started.
I tried to file a complaint about the situation.
Where we lived before the HMO we belonged to had an outpatient facility for chemo, and infusions. Dick had his iron infusion there when we discovered he had lost all his iron reserves (not related to bladder cancer). So we have seen very good facilities and substandard facilities.
I wonder if this type of facility is more common where there is a high elderly population. Both Florida and Arizona have numerous elderly people retiring there and wanting medical services.
You are right to demand better conditions for your chemo. It is hard to demand what is due to patients when they are fatigued and are using all their resources to cope. But unless people speak up nothing will change. The medical staff where you went are so used to the situation they don't perceive how horribly they are treating people. The top layer of administration needs to hear that the facility needs to change and have a special unit for chemo and other procedures such as blood transfusions with a dedicated knowledgeable staff not just the left overs from an overworked ER staff.
The first place Dick went had an open floor with comfortable reclining chairs to sit in. Plus they had portable DVD players and a selection of DVDs. Down here in Tucson we bought our own DVD player and take along a movie to watch.
Hi Maria - I am so sorry to hear of your experience...Harry's experience was somewhat different than what Cynthia described, although I think if he had opted to return to Stanford (3 hours away) it would have been similar. His surgeon said that he could do the chemo locally, in Fresno, about a half hour from our home, so we opted for that. The local oncologist we were referred to from the start has his own practice, opposed to other oncologists in the area that are in "group practices". We went to his office for the infusions. He has two rooms set up for chemo, one with two recliners and one with only one. Each had additional chairs for company. We tried to use the room with one recliner as much as possible, so Harry could listen to his radio talk show (he took his little transistor radio!), read or nap, (he's not much of a daytime TV watcher) it was a little more private. The nurse was very helpful and gave us a lot of tips when we started, then she left on maternity leave for six weeks! But, not to worry, the doctor actually set up each of Harry's infusions while she was gone!!! It was actually nice, because we could talk to him and ask questions as he started the infusions each time. It was really personalized treatment! The nurse returned from her maternity leave for the last few treatments and she also was very nice and took time with us for questions and checked on Harry frequently...that was one thing that I had to monitor the drip progress a little more because, of course, the doctor was busy with other patients -but it all worked out well.
I am so sorry that your initial experience has been such a bad one....I've heard some of the "group practices" here have the patients treatments in their centers rather than going to a hospital setting. Perhaps you could check to see if your area has anything like that, or if there are any private practice oncologists in your area...
I am sorry that on top of everything you are dealing with nausea and fatigue, which is itself very trying. We continue in our prayers for comfort and that a more suitable arrangement for your treatments can be found. HUGS AND MORE HUGS...Love and prayers, Margot and Harry
You are very right not to except these conditions. I live in a very small area and they are not well set up to do chemo here. I did twenty trips to infusions and we did them all in Boston it is a two and a half hours drive. But I firmly believe that the care I received from people that worked with the chemo drugs I was on daily and a Oncologist who only deals with blc. The nurses in the infusion unit did nothing but chemo and most specialized in the drugs you where taking so they knew what to look for. My Oncologist had an angel for a Nurse Practionor who constantly monitored me and saved me by her great knowledge from most of the side affect that many experience. Available were social workers and nutritionists.
Besides that I had my appointments weeks ahead of time so I knew what was going on at all times. We drove down the night ahead of time and stayed in a hotel close and drove back after chemo unless I had tests or the such. My room was shared unless I was having a bad day then I had a private room with a TV and it was very pleasant. If you shared you could curtain yourself off and the chairs where some of the most comfy I have every sat in they could lay flat if you wanted. By the way most of the rooms had a clear view of the Charles River. There were harp players, massages, warm blankets, food and treats among other things, if I had wished there where class's for yoga and art therapy to name a few. If I had to walk from here to Boston it would have been worth it.
I am sorry you had such a bad experience but there are much better ones out there.
Chin up and straight forward
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Maria, this is just awful! Chemo is bad enough without having to have it in these conditions. I hope you have someone speaking up for you on the conditions besides you. I wish I was there I have a voice that's heard loud and clear when I'm upset.