Anxiety

[Pat351v]

This is my concern...anxious about my appointment...how do you calm down?

[Hidden]

Pat

For me, in the beginning I did not have much anxiety...but that has gotten worse recently (see previous posts if you want). My anxiety comes centers around waiting for the results of blood tests though, not seeing doctors....For me, and I understand it is not for everyone, I want to see the results of my blood tests before my appointments. That helps.... I don't want any surprises when I go to the doctor. I also started some light mediation which seems to help some...just trying not to think about all the bad it could be.

You might find this type of thing comes and goes...I have to get blood work done, should of gone today, but it was too hot....but it is not really bothering me like it did last month.

I don't usually get anxious about seeing my doctors, I like both my PCP and Hematologist quite a bit...but I just found out today my Hematologist is gone this month....and I am seeing a different doctor this month....that has me bothered a little...cause I don't like whitecoats as a rule of thumb.

Scott

[Marie-54 in reply to Hidden]

I am very lucky as my hospital has a system whereby I can see my blood results online usually within an hour of the blood being drawn. There is no cost for this service. We can sign into our chart and see lab reports and clinical notes as soon as they are finished. CT, Xray, Ultrasound and biopsy tests we have to wait 3 weeks for however, as that gives the doctors time to review them. We can however, go to the hospital records office and get copies of said reports before the 3 week period at any time, as we are the owners of those reports. They charge a small fee for the printout, but if I am anxious, I do not have to wait.

[Hidden in reply to Marie-54]

Marie

What is up with this getting blood test results in an hour? I think DebKat999 and maybe BeckyLUSA were saying the same thing...All my test results get posted to MyChart usually within a week but I never heard of getting blood test results in an hour...

I mean I know they have to get the blood delivered to the Blood Gnomes, then the Gnomes have to taste it some...then do some weird blood magic and go into a trance and write down all the results....seems to me it would take longer than an hour.

[Marie-54 in reply to Hidden]

I use MyChart and had my bloodwork done at 07:30 this morning and had my results in MYCHART before I got home at 08:00. that was for a CBC with Differential. If they also have to do another set with Calcium, Potassium, other levels etc, that takes around 45 minutes to an hour. The preliminary CBC results show up in the meantime almost always before the hour is up. If they have to do a manual differential because the WBC count is too low, then that usually takes another hour. When it was extremely low, (My neuts were 0.00 at one point) it took at the longest 8 hours before I saw anything more than the preliminary numbers, but most of the time I see the standard blood test results within an hour of the donation.

At my hospital, when they draw blood, it goes by vacuum tube to the lab so they have it within a minute of it being drawn and can start work on it right away.

And oh joy - with my results this morning still not being great, I got called into the hematologist's office for an appointment this afternoon.

[Hidden in reply to Marie-54]

They always do a manual differential on my blood tests....I get a CBC /ManDiff every month. I also get a full metabolic panel as well....but this whole getting the results in an hour is crazy to me. Maybe it is because I live in Maine and the blood needs to get sent to a lab (We both know I mean Gnome Bramble Tree when I say lab, right). It takes anywhere between 3 days and a week before they get posted to MyChart.

I always find it so weird how things are so different for everyone in terms of tests, what whitecoats say, how often we see them...etc etc...

Scott

[Marie-54 in reply to Hidden]

Helps that I am in Canada and my 'weekly' tests (I am having a few issues) are always done at the hospital where I am treated, which is just 25 minutes from my place. It is very reassuring to have the results so fast all the time, even if they are not great, so then I can prepare my questions for the docs before I see them.

[Hidden in reply to Marie-54]

Ah, I just swing by any Nordex and it takes 5 min to get the blood tests done...but they have little Nordex shops all over...at least 5 within an hour of me (and hour is not far in Maine). So I am guessing those are just little collection points and they all get sent out to some big Nordex lab (lab, heh...right)

[DebKat999 in reply to Hidden]

Sadly that wasn't me Scott, I wish it was...I do get my results online, but it takes at least several days and often longer...during which time of course I obsessively keep checking for them over and over....

[BeckyLUSA in reply to Hidden]

I go to a fairly large regional cancer center. Most everything is done in house, or in a lab just across the street. They schedule my blood draw 50 minutes before my doctor’s appt. it’s usually about an hour before he gets to the room, and the important stuff is usually back. Sometimes the metabolic panel takes an extra 10 minutes or so and my immunoglobulin levels are not back til the next day.

I haven’t met any of the vampires that work on the lab, only the blood thirsty ones that draw the blood. This past Thursday, when they took my blood, they forgot to get the two extra vials for the trial workup. They had to stick me again just for that. There will be some coal in their Christmas candy this year!

Becky

[BeckyLUSA in reply to Hidden]

I go to a fairly large regional cancer center. Most everything is done in house, or in a lab just across the street. They schedule my blood draw 50 minutes before my doctor’s appt. it’s usually about an hour before he gets to the room, and the important stuff is usually back. Sometimes the metabolic panel takes an extra 10 minutes or so and my immunoglobulin levels are not back til the next day.

I haven’t met any of the vampires that work on the lab, only the blood thirsty ones that draw the blood. This past Thursday, when they took my blood, they forgot to get the two extra vials for the trial workup. They had to stick me again just for that. There will be some coal in their Christmas candy this year!

Becky

[turkey2]

I try not to think about, but on the day of my appointment about the only thing I can do is practice controlled breathing. My blood pressure tends to go though the roof before any doctor appointments anymore, but it's the worst is for the oncologist appointments. The blood draws are done first, then after the initial interview with the nurse, I see either the doctor or the PA within 15 - 30 minutes at which time the labs are complete. Usually it's every 3 months, but a couple of the numbers weren't good the last time, so only 6 weeks to the next appointment. I just do my best not to think about it, plus try to watch nothing but comedies or westerns. I am a voracious reader of the news, but not at night - trying not to add to my anxiety so I can at least get a good nights sleep.

[MsLockYourPosts Passed Volunteer in reply to turkey2]

My doctors figured out, when I was new, to redo my blood pressure at the end of appointments.

[DebKat999 in reply to MsLockYourPosts]

Mine do now as well. It was established that I have a definite case of the dreaded "white coat syndrome".

[Ellieoak]

Dear Pat. My Doctor gave me Lorazipam (Ativan). It helps a lot. It is the only thing that I need to calm me down.

[MsLockYourPosts Passed Volunteer in reply to Ellieoak]

My stress was back when I was teaching and appointment stress was a combination of white coat syndrome and just making the hour plus drive to get to my appointments on time after work. It started again when treatment was coming again after a 10 break. Now that I'm back to boring patient status it's not an issue. I have a bigger fear of taking something like Ativan before my drive home - about two hours in traffic.

[Ellieoak in reply to MsLockYourPosts]

You can try a 1/2 of one before you drive. It takes 2 full ones that make me droopy. I take 10 mg, so a 1/2 of one will definitely work for you or try it at home first if you are afraid.

[MsLockYourPosts Passed Volunteer in reply to Ellieoak]

I have taken Ativan at home before. I will not take it and drive. To me that is right up there with thinking that you can have a few drinks and drive. People react very differently to drugs of all types. I don't need the Ativan. If I felt that I did, I would find a driver.

[Newdawn Administrator in reply to MsLockYourPosts]

Published advice on Ativan would seem to support your caution on this.

I think it’s important to stress that Ativan should be used with great caution for people intending to drive. This old but nevertheless still relevant research suggests ‘this review of these subjects indicates that lorazepam is capable of causing significant impairment to driving and psychomotor abilities, independent of the concentration detected.’

ncbi.nlm.nih.gov/pubmed/155...

Probably best to have someone drive you if you’ve taken Ativan. Better to have a supporter who takes the strain anyway I find for appointments if at all possible. I like to go in alone for my consults but hubbie does the driving, finds the parking space and gets me a coffee 😊

Regards,

Newdawn

[Havemercy]

I am now in treatment but during the seven years on W and Wait I too used to dread those appointments every six months. What helped me ( a bit ) was having something nice to look forward to directly after the appointment - in my case it was an Indian takeaway supper as a treat. Perhaps a lovely meal at a local restaurant? Or a shopping trip with a friend? Maybe a trip to the theatre or cinema. Worked for me anyway! !

[Senecio]

I think it helps to channel the anxiety into things that you can do something about - i.e. what questions you need to ask (write them down), make sure you listen carefully to what you are told (if necessary take a family member or a friend, and ask them to take notes - or maybe record the whole thing). Write a list of any symptoms or issues you are aware of one of them might be of key importance.

It is natural to be nervous, but try not to worry about the blood test results (there's nothing you can do about them at the moment).

I see my consultant today too!

John

[UK-Sparky]

Pat, not sure of your circumstances, my wife always come with me for starters as I can get 'tunnel hearing'! I also have faith so a prayer helps. You have seen above many strategies. hopefully one suits you

God Bless

UK Sparky

[annmcgowan]

Hi anxiety is normal prior to appointments for many of us. Everyone has different ways to deal with this, many mentioned here in your replies. Do you have a method of your own you have used in the past that you could resurrect? If not any of the following could help:

1 Relaxation techniques/tapes - you could practice regularly and or play one on headphones waiting for appointments

2 Meditation - as with relaxation

3 Mindfulness- as with relaxation

4 Talking to someone you trust and taking them to appointments with you

5 Diaphragmatic breathing

6 Yoga

7 Distraction

These are not in any order of priority or preference.

If non of these techniques appear to be working for you or you need instruction in any ask if your GP can help or recommend any accredited bodies who can.

I find a mixture of these help me talking,distraction,relaxation/meditation/mindfulness.

Good luck, let us know how you go.

Ann

[Lily_Pad_Master]

Great suggestions, all. I hope you can find some you like well enough to put into use. I have several of my own. First, I'm an avid disc golfer and between me and Dana-Farber lies one of the world's top courses. So, I try to stop there on the way to or from my appointments. Then, psychologically, the trip is all about the magnificent course and my physical activity on in, not about the visit. Second, by choosing Dana, I know that when I go, no matter what happens, I'm in world-class care. Third, with the pace of advancement in CLL treatment, and the fact that I'm only just now coming up on my first treatment, I now finally and fully believe what my doctor (Doctor Davids) told me the first time I met him and when he could tell I was very scared. "Glenn," he said, "Fear not. We have you on the 40-year plan." That was five years ago when I was 52.

[pkpayne]

Marie and Scott, When I go for labs - which is once a month - as well as when I see the doctor they have me go to what they called 'Fast Track'. The results are usually available within an hour - before you see the doctor. We don't see it until then but they always give us a copy of it when we either see a PA or the doctor. In addition we can always go online to see results as well. But like Marie said, the CT results are usually available in a couple of days but the BMB usually take a week or two. When they are ready, we get an email that tells us they are on our charts that we can see.

Paula

P.S. I guess they don't have any blood Gnomes down south.

[Hidden in reply to pkpayne]

They got them Paula...just go by names like Phlebotomist, Technicians, etc....they usually vacation on people's lawns...rare and hard to see....but they are there. I wish I got my results in an hour though.....

[pkpayne in reply to Hidden]

Well Scott after a very long day at the hospital a while ago, my husband had lost all patience and went to the desk where they took blood and demanded to know where my blood was. (We couldn't leave until we had a results and we had been there all day. In addition I should add that he is experiencing 'MCI' - mild cognitive impairment so his patience is short anyway and he told the desk clerk that he knew that they had it since he was in there when they took it. We all tried to explain that those people didn't 'keep' my blood but sent it off to the labs - I suppose were the Gnomes you are talking about are. I bow to your superior knowledge about them.

Paula

[Hidden in reply to pkpayne]

It is right and just to have MCI when around or near any whitecoat. Clearly your husband was right....he was there when they took his blood

I question your "couldn't leave" statement...I would of simply walked out the door and then called repeatedly after I got home....likely on some horrible tirade with extremely vulgar language...which I keep myself from doing to my PCP and Hematologist cause they are great.....

I am not a big fan of vulgar language...but I dunno...I think I get extreme cognitive impairment in those situations.

Worry not about the Gnomes...vile, horrible little creatures....but hard workers in the medical blood testing industry.

Scott

[pkpayne in reply to Hidden]

Let me explain the 'couldn't leave' statement. I'm on a trial as you know and I had been admitted to the hospital for 3 days of the first 3 weeks of the ramp up of the Venetoclax. On the next week when I didn't have to go into the hospital I had to have labs early in the day and then 8 or 12 hours later (I can't remember which). I even told them that I lived fairly close and could be back within 30 minutes if it was necessary but the trial coordinator said it was too dangerous. I would have been willing to take the chance but I wasn't willing to get thrown out of the trial. That's my story and I'm sticking to it.

Paula

[Hidden in reply to pkpayne]

Paula,

I understand better now. I read between your words clinical trials are carried out at Super Max prisons. I didn't know that before

[marcyh]

I am a natural worrier. I spoke with a family member last week who is a counselor and who struggles with anxiety. For the first time, I heard someone say in essence - don't worry about it! He said the more we try to calm down the more it embeds and reinforces itself because we're focusing on it. He suggests responding with, "There it is again - oh well!" It's a form of acceptance - opposite of what we want to do - but also letting go.

I'm going to try this! 😊

marcyh

[Pat351v in reply to marcyh]

Thank you!

[Pat351v]

Dr feels 99% its cll...doing blood flow cymetry ? and other labs then meet witb dr in sept