Hi all, this is a terrific resource and am thankful for all of your input!! and so, here I am again, the every three month blood test. It is normal, I guess to have this trepidation but it brings back the whole "why do I have to have this damn CML?" And what if the numbers are climbing? So far they haven't been, but....It will be three years this Fall, but still. And sitting in the waiting room filled with others who have various stages of cancer is so frightening!! As the day approaches, 5 days away the anxiety gets worse. And then there is the waiting for the results!!! Anyone relate??
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And the anxiety builds AGAIN!
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Hi bendicco, you have probably described how the majority of Cml “members “ feel, its as if I wrote your comment myself, even parking the car on arrival at the hospital car park I can feel the stress and yet, hopefully with good results when returning to car I feel a whole lot better, I put it down to “fear of the unknown” you can’t see what’s happening, with you all the way bendicco. Peter
Almost 10 years and still the same anxiety as yours. Even when I've conquered it on the surface, mentally and rationally, the "insides" are still undone by anxiety. For me it's about two weeks out. The way I know what's going on is that I start waking up 3 times a night for no discernible reason. It's just always there, working away in my subconscious. No matter how many times we get a pass, we still remember that very first test result that turned our lives upside down.
I know what you mean about the waiting room. I have tried to come to view it as a "memento mori" experience. Humbling. For my own good. I try to make myself truly SEE people. But I usually fail and just come away with such sadness.
Know that I know Harriet, I know. I wish we could figure out a way to incorporate this into our lives. But I feel like this CML has put us in a separate bubble that only those with cancer can understand. Friends and spouses can try to understand, but they don't even come close to getting it. I will tell you what my oncologist tells me when I am freaking out, CML is something you will die with not from. Look forward to a normal life span. Breathe deeply my friend. Keep us posted!
Tha Cancer center I go too, moved the office for follow-up care to a different building. The main building has a big sign over the entrance. This makes it feel more like a regular visit and helps with the stress. My blood pressure is always high at the visit and normal at home. I try hard to look at a doctor visit as preventative care now. But I always remember how relieved we were when I was told a pill daily and regular check-ups.
I think this is another area where my experience of having testicular cancer 30+ years ago helps me now. For that cancer I had follow-up x-rays and blood tests and used to get pretty stressed. When I was given the all clear (after 3 years in that case) it did rather scramble my brain for a while.
Since my CML dx 12 years ago I have worked on the principle that the test results will be fine, and that my consultant will contact me if they are not. I've been lucky in that the 3 consultants I have seen I could trust to do that if necessary. I had a BCR-ABL sample taken on 6 March. My next appointment is 22 June. I will know the actual result then, but if the 6 March result showed I had lost MMR (I am 5 months into trying TFR) I would have been contacted by the hospital before now.
Oh the WAIT, wow I try to keep busy, but it is like time stands still until I get the results and then for a moment after I thank the good Lord, I feel safe, but it does not last long b/c then I wonder what will happen in the next three months until we do this all over again. The doc is right CML won't kill me but I think all this anxiety has a huge toll on my body and mind, something else will get me!!
Its tomorrow i go and i feell paralyzed a few days before,yes three weeks is long but for me its the last 3 or 4days that totally freak me...yes no one but us get it,my husband is always so positive and cheerfull,bless him and there i am snapping..its nreve wrecking no matter what you say they dont get it..will let you know how i am after..
thanks
Anyone who is not anxious about the PCR result is either not human or not being honest. Some of us handle stress better than others, but it is still scary leading up to the blood draw and waiting for the result. When I was first diagnosed, the PCR result would be available on the Mayo portal 2 - 3 days after the blood draw, so my wife and I would plan outings for the day or 2 while we waited. I also snuck in a xanax or 2 to help relax me. That helped a lot in keeping it out of the front of my mind. For about a year and a half now, Mayo in Fl has had their own PCR lab technician, so I now get my result on the patient portal 5 - 8 hours after the blood draw which is the same time my oncologist gets access. I am so fortunate to have this almost immediate turnaround as it reduces the anxious waiting time. I cannot imagine having to wait 2 - 3 weeks like some do. I am now also on 6 month blood draws, so there is more time between testing to not feel anxious at all.
Like Alistar, I try to tell myself that the result will be fine, but we all know that is easier said than done. So, hang in there and know you are not alone. Since I reached DMR, it has gotten a bit easier, but only a bit. Otherwise, like most of us, I live my life the best I can between the parentheses (PCR tests).
I thought of one superstitious trick that seems to give me an illusion of control in this PCR mess: I map out ahead of time what would be an acceptable number. I go on from there to decide what reasonably plausible number would make me ecstatic, then a number that would make me happier than usual, an acceptable and OK number, then on into not acceptable, right down to really bad/freaked out. A spectrum! It keeps my mind busy, and somehow I feel fortified against the shock of the actual number when it arrives - as if I had envisioned it already. Make any sense at all? Works for me!
Hi! i know how you feel...but, try live your life around CML not the other way, i am scared too sometimes especially because i see my body changing in front of me. I found hope in this forum and im glad i am part of, i especially enjoyed reading of members with similar symptoms and stories, but also the informations at the Home page ( where it says are you new of CML?) or something like that... sorry:) that will tell you that CML livelihoods is higher and higher every year and the chance of getting hit by a bus are higher than dying of this thing that we share, if i had to pick my poison? Knowing what i know today, it would probably be CML..(sort of speak)... the glass is half full.. cheers.
Bendicco,
Yes I relate to the fear, but it is also completely normal. I also relate to the anger. I hate cancer! And I feel for everyone on here who has to deal with this.
I also am dismayed that the drugs have so many side effects and can be toxic. With the billions that are made on these drugs you would think they could have come up with drugs without side effects or better yet a cure.
Anyway, what helps me when I go for my PCR test is staying busy. That isn’t hard to do with my life. I hit the ground running every morning and I don’t have a lot of time to think and ponder things. Sometimes that is a good thing. It helps with anxiety.
77 in one hundred thousand. That's excellent!
You must be pleased. It takes a weight of the shoulders, doesn't it?
I have my first result coming up after reducing dose to 20mg dasatinib. I'm fairly sanguine about it. If it's good, I'll be pleased but if it's not and I need to raise the dose again c'est la vie.
David.
yes it feels good,but the brain never stops he mentioned a slight elevation in s-albumin level and s-alat plus kalsium,but he said it was nothing to worry about,but the brain latches on to these things..still they are the same as before so why mention it now give or take a bit,he said it could be i should loose a bit of weight and asked what alcohol i drank,just red wine,however i have been taking extra vit d and that can cause some elevated levels when you take too much,uff it drives me nuts.
sometimes i wonder about doctors...
still overall its good and we shall see in 6 months,i will go down in vit d as the spring has arrived and i have had to take some paracet so we will see.
i hope your results continue the good road and that you get to stay on the lower dose,the meds are so strong and the side effects are nasty but i get the impression that they get better or we get used to them..
take care stay well
Harriet