Life does not end with a stage IV diagnosis (really!)

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Comments

  • xsuzx
    xsuzx Posts: 13

    hi Pam. I made a mistake, it’s my sacrum where I have all the pain. I get PET scan Thursday and will update everything correctly when I get diagnosis. I had no lymph node involvement either, and thought oh yay! That’s it. Thank you for posting. I am on pins and needles and have such anxiety and fear. I am grateful for you and this community.❤️

  • xsuzx
    xsuzx Posts: 13

    how soon from PET Scan does treatment begin? Does oncologist give you something for pain if you are having it thru treatment. Now he is going to be handling me instead of primary. Also…..Are PET scans claustrophobic as MRI? I love you all already. I was freaking out wondering if I was going to be here in a month. I know I have to get my diagnosis, but last month after my clear Mamo….my oncologist looked at me funny and said …but you are anemic, when he looked at my blood work. . I told him I’d eat more spinach. 3 weeks later this excruciating pain started in lower back and rib and back spasms! Thank you for being here. I guess I am just spinning now. Have a beautiful day.

  • @xsuzx You have a lot of questions that need to be answered by an oncologist. I am not claustrophobic. However, I find PET scans to be shorter in duration than MRIs. And, they’re not nearly as noisy. You don’t need to have a headset on or anything like that. So, overall, I feel a PET scan is less irritating, if not less claustrophobic.

    Regarding pain: be sure to let your doctors know that you are having pain and the level of severity. They should be able to prescribe something that will help. Once again, I am so sorry that you are going through this.

    And regarding anxiety: I asked for a prescription for lorazepam. I do not take it during the day. I don’t like feeling out of it. However, I do take it once or twice a week an hour or two before I go to bed. It helps me sleep through the night, which is very important. Something to think about if you feel it is necessary.

    Hugs, Pam 💗

  • @xsuzx Perhaps your PCP would be able to give you a prescription for lorazepam. That’s who prescribed it for me. It took me a long time to get in to an oncologist as well. I was majorly stressed, so I feel where you’re coming from.

    Seek out all the distractions you can. The beginning is the most difficult, as others have pointed out.

    💗🤗🥰

    More hugs, Pam 🤗

  • aj
    aj Posts: 387

    Palliative care helped me a lot. They increased my antidepressants and prescribed lorazepam. They’re working with me on my sleep issues. Also they referred me for short term therapy to work through my anxiety. I don’t really need it anymore but my therapist said I could return if I needed to. Palliative care is not hospice so don’t be freaked out about the name.

  • @xsuzx

    I’m sorry for everything you’re going through, and I hope you get answers to all your questions.

    As for me, I’m speaking from my personal experience.

    I have a severe phobia of closed spaces (claustrophobic) ,so I never undergo MRI scans without anesthesia or sedation.

    I’ve had three MRI scans in the past few months, and they were a horrible experience for me, even though they used anesthesia.

    However, the PET scan experience is much easier for me.

    I wear a mask over my eyes during the scan, close them, and don’t open them until it’s finished (so I can prevent myself from seeing the transition between light and dark areas inside and outside the machine).
    which makes me completely comfortable.

    A full-body PET scan, from head to feet, takes about half an hour, compared to an MRI which can take several hours depending on the area.

    I won’t hide from you that I get very anxious before any scan, because I’m also afraid of large machines or devices above my head—they really scare me.

    In short, you can consider that I’m speaking as someone who is extremely fearful of scans and enclosed spaces, but I’ve found that I can manage a PET scan much more easily.

    I wish you a speedy recovery from your bone pain and stability after all this hardship.❤️

  • @livinglifenow

    Thank you, Pam.

    I always find the answers I’m looking for with you.

    Regarding the medication you’re taking for anxiety,

    is it also helpful for insomnia and difficulty sleeping?

    Ever since I found out that my doctor is going to change my treatment, I haven’t been able to sleep much.

    According to my Fitbit, I barely sleep more than 4 or 5 hours.

    And Does this medication cause dependence or addiction?

    Thank you

    🤗🧡🧡

  • @norah2024 So glad you have found a way to get through a PET scan comfortably.

    As for your question regarding lorazepam… it helps to relax muscles and anxiety. I take it about 90 minutes before going to bed. I start to feel a bit more relaxed about 30-60 minutes after taking it. It does help to knock those annoying worries out of my head and I usually manage to sleep 6-7 hours. Because I have a lot of tight muscles and they feel like they are ready to cramp, especially at night, the lorazepam also helps to tamp that down.

    As I stated before, I only take it once or twice a week. As with any medication of that type, it’s best not to take it daily, because you can need more and more to get the same effect. On the nights when I don’t take it, I take 50 mg of CBN, a CBD nighttime product. That doesn’t help as much as lorazepam, but does help me to sleep fairly well.

    Sleep is so important to our health. I always feel better the day after a good night’s sleep. 💤 I’m sure we can all relate to that!

    Since I don’t have an “addictive personality” (I prefer not feeling zoned), I’ve not had an issue.

    I’ve read about other women on this site who take this medication too.

    Good luck and I wish you some worry-free nights!

    Hugs, Pam 💗