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How do I get answers
CandiceRG
98 Posts
I am doing my last chemo on October 24 and it was my understanding that I would have one more in person appointment with my hematologist after my CT in November. Now I was informed that I would get a 5 minute phone call. I have been jotting down questions which I expected would be discussed at a wrap up type appointment. Questions about my immune system/vaccines, life expectancy, what I can do to keep myself safe and prevent a relapse. I know I have follow up appts every 3 months for 2 years, and less frequent after that but I just thought there would be something more to this end of chemo appt? Where can I get answers?
​​​​​​Any advice is appreciated.
4 Replies
supersu
1477 Posts

@CandiceRG
woah…..last chemo already! so great--bet that makes you a happy!

I too was shocked at how quickly I was dismissed from cancer care. I had one 3 month mammo, and was told that anything further I had to arrange with my family doctor. I assumed it was because I was being treated during COVID and the system was just splitting at the seams, but it seems as tho it is pretty standard practice.

who are you having the 3 month follow-ups with??
maybe they can guide you, or if it is haematological at least they could find out from their colleague(s)??

did you have a nurse navigator? I found that they had access to information and really took the time more than the doc's ever did.

or is there a support group for your kind of cancer? folks who have travelled the path before us, often have lots of insight.

good luck finding your answers. so frustrating out here in limbo land!

cheers
su

#lastchemo #followupquestions #limboland

CandiceRG
98 Posts

@supersu thank you for the reply and very good ideas. I am definitely ready to say goodbye to this chapter 💗 I didn't have a nurse navigator but I left a message with the psychosocial office. I also have a online meeting through the LLC organization tomorrow night so hopefully i can get some info there.

I have been very neutropenic throughout the treatments and so have had to isolate and drastically reduce my people interactions. I really want to go to a store, visit my son's new home, eat in a restaurant.. but I don't know when I'm safe to do this. All my follow up is with my Hematologist as far as I know. But I am hoping to get my freedom in the coming weeks not months.

maybe I can fit in more questions than I think in 5 minutes…but it would have been nice to see her in person.

@CandiceRG Have you asked if you can have an in-person appointment? You don't know until you ask. They would have to be able to arrange something if you had something happen where someone had to physically look at you. Perhaps there are dates specifically for in-person appointments vs. virtual ones.

Like you and @supersu, I was surprised at how quickly my cancer appointments ended. It was like being dumped. I don't think the medical profession has a firm grasp on what the toll is on someone who has been through cancer treatments.

Please let us know what happens with your appointment. That's great news that you are on the home stretch.

cancertakesflight

CandiceRG
98 Posts

@cancertakesflight thank you for the support and suggestions, I'll ask for sure. I think it's important to know what I need to look out for. I don't even know how to contact her when it's not through the cancer clinic.

TBH i felt more support from the chemo nurses throughout the 6 months. But I trust my hematologist's knowledge and it seems like an important step was missed.

I'm grateful for organizations that can fill the big gap in emotional support. You're right that there are definitely some in the medical community that just don't get it.

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