bad bad blogger.... not keeping everyone updated...
Anyways, here's the scoop:
My last "chemo" post was on a Tuesday. I actually didn't start feeling better until the Saturday after that post. So in all, it was a 9 day haul. Thursday and Friday were good... I don't really recall Saturday and Sunday as I slept through them... and Monday through Friday were tough. I dealt with nausea and occassional vomiting the whole week. I was fatigued beyond belief too. Then on Saturday, I was better.... energy still low but MUCH MUCH better and I was no longer nauseaous. I've been feeling much better since then as well. My appetite is returning and my energy is back to its normal low levels.
I am quite ticked off with my "support" team at this new hospital. I called them 3 times when I was sick - I have been through 4 types of chemo but had never felt this bad for so long so I needed to know if this was normal or if I should get some blood work done (ie for transfusions or injections to increase cell counts). They returned my calls the first two times but the information I got was less than helpful and a bit patronizing and I never actually spoke to my doctor or his nurse. They didn't even return my call the 3rd time.
When I went to get my bloodwork done this past Tuesday, the assistant made some comment about me "calling a lot". I told her that I was feeling VERY very bad. She then commented along the lines of: "well... sometimes you just need to just bear down and get through it"... I told her it was easy for her to say! ooohh I was mad.... exactly how many chemo treatments has she gone through? I then told her I was nervous because I thought I might be getting one of the nasty side effects... she replied that "oh.. that would take much longer to happen and it wouldn't happen like that"... and I would know this how?? I don't have a medical degree! Would it have hurt them to address that concern of mine with some compassion?
The nurse taking my blood was much more sympathetic and said I definitely need to tell my doctor how bad this chemo was. I lost 10 lbs (although I've now gained 5 of that back - it was probably mostly due to fluid loss) and a week of my life. This may be par for the course for this chemo for me, but in no way did they prepare me for this... or reassure me as I was going through it. I am so disappointed with their lack of compassion and understanding - especially this assistant.
I'm going to put the facts and my thoughts on what happened on paper and give it to my doctor. This way I can deal with it unemotionally and calmly.... and he can understand what happened. I realize they are busy.... I realize they probably get inundated with phone calls from people complaining about every little thing... but that doesn't mean they still can't reply with compassion and reassurance. It's tough enough going through chemo and dealing with side effects that are scary... we don't need to be patronized or ignored as well.
9 comments:
Welcome back, Annette! Definitely let your doctor and staff know how this affected you and how you were treated when you had questions. I certainly hope it gets resolved and you get the support you need. At least if they could direct you to whom you could contact. Enough of that...
Enjoyed a beautiful autumn day today and was reminded of the boys playing out in the leaves at the end of Sept.
Praying for you and 'de boys'
Love, Alice
Good to see an update Annette. I've been thinking of you. I'm sorry this last round was so difficult, and I think that the staff's behavior was totally out of line. They most definitely should have showed more compassion and at the very least listened to your concerns and had a doctor get back to you. I'm sorry it didn't go so well. I think your game plan to talk to your doc is a good one. Praying that the next round goes better.
Hugs,
Christine
Welcome back Annette......we have all been thinking about you non-stop while you were dealing with this battle. I'm so sorry to hear about your relationship with your support team....sadly, my Mothers last days were filled with patronizing and uncompassionate medical staff [completely unacceptable in my eyes] and I pray that your letter to your doctor will open many eyes and you won't have that journey again.
Much love to you, my dear friend.
Peace and love, TM
Annette, I'm so glad that you're feeling better. You have been in my thoughts and prayers and I'm so sorry to hear that this last round of chemo has been so difficult. I just can't believe the insensitivity of your "support" team and I agree that you need to bring this to your doctor's attention.
Sending you positive thoughts, lots of prayers and great big hugs to you and the boys!!
Robin
Chloe's Mommy
Annette: You were right to be concerned and your questions were in NO way inappropriate. Sheame on them for treating you so badly. I'm glad you're through the worst of it- I was getting pretty nervous about you, friend :)
Take good care, Chris
Oh honey, I am so sorry that this one was so tough and that the office did not give you the compassion, information and respect you so deserve. Much love and many prayers! Nicole
Thoughts and prayers continue. And if you want me to come up and beat some "support team" bootie I am there!
oh my! I would have been really upset at that comment about bearing down and dealing with it -wow! Talk about insensitive! Someone in that type of position who is supposed to be there for people uunder going cancer treatments should be a little more sympathetic and understanding and respectful! I'm so sorry to hear about your experience this time around; I hope you can talk to the doc about the front office staff...that's inexcusable!
Annette - so great to see you post again - I keep you in my daily prayers and have had you on my mind so much! How incredibly insensitive of the whole medical team.... That is their job this is what they do - they are supposed to be there for their patients - and if they lack compassion then maybe they need to find a new line of work. Really Annette - I am so very sorry that on top of all the side effects you had from the chemo that you also had to deal with people who could not even return a phone call. It makes me mad that you should have to deal with this. I sure hope that once your doctor gets your letter that some changes will take place! You have every right to be informed and every right to have the medical staff be a support for you.
Sending lots of hugs and love your way girl!!!
Hang in there!!! And bless you!
Love,
Lisa and Lily
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