I have been in touch with hundreds of survivors and I know of none of them who said: “It did not bother me when I was told I had cancer – after all cancer is quite curable in this day and age.” I am sure you have never heard that, nor would you be willing to say it.
It is true – there is a very good chance that if it is caught early enough, you will survive. But that is irrelevant! That is a logical premise, and the person who is just diagnosed with cancer is not thinking logically. The doctor might just as well have said to us “you are now on death row – get your affairs in order.” They try to break it to you in the best possible way; but for sure they could use more training in this regard – or perhaps there just is no good way. This is when the doctors really earn their pay checks.
In my case I went through it twice and the two doctors came across in dramatically different ways. My first diagnoses was the result of my visiting the emergency room with the result going to my internal medicine doctor. The blood test results seemed quite clear to her that I had leukemia. I got a call from her office to come in before my appointment, which was a few days out, so I knew that something was amiss.
“You have leukemia” she said in a matter-of-fact way. Recognize that I was very spaced out with a weird headache and not really able to see straight – my wife had to drive me to the doctors. She seemed to think it was nothing. I was not sure just what leukemia was, but had heard of it. Maybe it was nothing.
“Is that cancer of the blood?” I asked.
“Yes.” Then a pause. The next thing I recall her saying was: “It looks like you are going to be quite busy over the next few weeks, with chemo and all. Here is a referral to an oncologist …” She said a lot of other things but this is all I remember.
I am not one of these persons who presses the doctor with “how much time to I have, doc?” That is not my style – I know that they are reluctant to make an estimate, and I do not want to put them on the spot. At this point it was … “just tell me what to do next.”
What was my psychological state at that point? I thought I was going to die. No, that is not strong enough. I KNEW that I was going to die – it was not like there was any hope at all for me. My thought was: once cancer gets in your blood it invades all other parts of your body and it is just a matter of time. This fearful thought was not accurate – there is such a thing as metastasis (look it up), but leukemia generally does not result in it. But again, facts have no bearing on the psychological effects of being told that you have cancer.
Well there was one more thing I remembered – I asked if she was sure about the diagnosis, and she said (accurately – at least at that time) that there was only one way to really confirm it and that was with a bone marrow biopsy (BMB). Ah, so perhaps I could dodge a bullet? I guess there was a very small glimmer of hope at that point.
That leads to the second doctor – the oncologist who performed the BMB. It takes several days to get the results of a BMB – they have to send the specimen to a lab that specializes in these types of things. Before going on, let me say to anyone who is contemplating their first BMB – it is not that bad … not as bad as it sounds. I had several and while I cannot say that I enjoyed them, by the time I got to the third one I was having so much fun joking with the med folks doing the procedure that at a certain point I had to discipline myself because when things get a little delicate none of us needs to be laughing.
But that was the third time – the first one I did not have a clue as to what it was all about and I was convinced that it was going to be painful, so I was scared to death. My advice – get them to give you a little something as a pre-emptive pain killer – it will also loosen you up a bit. But take my word for it – it really is not that bad.
The routine for getting the news of the BMB results was almost a replay of the first. Like the first one, they called me in a couple days before the scheduled appointment … that could not be good. So, I was prepared. I could tell by the look on the oncologist’s face when she came into the exam room – it was not going to be good. She almost broke down in tears. I appreciated her sympathy … but I think I would have done much better had she been totally upbeat; something like: “Yes, the news is not good, but the treatments that are available today will have you back to normal in no time.”
Well, I did not really want her to lie about it – perhaps someplace half way in between my two experiences would be best. Or, perhaps it just does not matter. It was clear from her demeanor that she did not have much hope. There were some results from the BMB that she did not have access to at the time that would have made her a bit more optimistic. We will not go into the technical details at this point because they are really beside the point … remember, we are talking about the psychological effects, not the medical details.
This second shot of negative information was more lethal than the first. We discussed options and I effectively just wanted to get it over with. She did indicate that remission was possible, but was not optimistic. So in that first week or so after the BMB results, I was effectively resigned to die in the next few months – it was a very depressing blur of a time, to say the least. One that you really cannot ever totally recover from.
What does this do to you psychologically? I expect the psychiatrists have names for it. I do not know how different people deal with it – it was tough enough for me even with my faith. Essentially there were times when I just refused to think about. I was 64 at the time, and I could look back on many good memories. Ultimately I resolved I would take it one day at a time and enjoy that day to the extent possible. One thing is sure … I refused to be optimistic as far as my survival was concerned. After getting beat down twice, I was used to the bad news, and I fully expected it to continue.
In my case, things changed – I know in other cases the expected happens, and the psychological effects to the victim become quite irrelevant. I will not go into detail, but a number of things fell into place for me and I was able to get a new oncologist and a new treatment center. This new medical team said there was hope of getting me into remission. At this point I went along with what they wanted me to do, which was essentially to be hooked up to an IV for what turned out to be months. Details are here if anyone is interested. Looking ahead to it, it was dreadful anticipation; looking back on it, it was an extremely valuable experience.
There was a major change in my attitude at about this time. I do not know what caused it, because I really never thought I would get out of the hospital alive. Signing a living will and making provisions – as they say “getting your affairs in order” – it all reinforced what I felt was likely to be a given. “Likely” implies some probability, some hope. Maybe it was because there actually was hope at this point that I decided to make the whole experience into an adventure. I would meet new people, have new experiences, and whatever would be would be. Pain along the way? That goes with any adventure … there have to be potential downsides that you escape from. I can recall actually articulated this in my head, and it made all the difference in the world.
However, it was not like I felt like I was just having my tonsils out or something like that. In the back of my mind I did not allow myself to think in terms of returning to real life. My wife would talk about plans for things we would do when I got well, and I would think “who does she think she is fooling?” But it was extremely positive to think that someone might actually believe I was going to make it.
You can go back and read all of the “side effects of chemo” articles on this website over the past month or so to see all of the physical things that I was up against over the next eight or so months. Psychologically, I would say that I reached a low plateau on the side of the valley, and just maintaining that sustained me through all of those setbacks. I refused to go into the valley of depression.
I decided to begin counting my survival from the time that I recovered from my final chemo. Until then I figured that, since the last chemo could kill me, it would not be right to call myself a survivor until recovering from it.
It was the time of the holidays when my wife and I went back for a check-up, several weeks after my final chemo (six rounds altogether). They declared that I was no longer in neutropenia, and so no problem eating at a restaurant. We stopped on the way home (for the first time in what seemed years), and as we paused to give thanks it hit me all of a sudden – I was actually going to survive! I had never allowed myself to think of that before, but now I could not avoid it – it was a reality. I was in survival mode. I was overwhelmed and broke down in tears – my prayer was no longer in words, it was in the depth of my heart. Life was sweet; God is good.
It does not end with that. You cannot go through such a traumatic event sustained over such a long period of time without it changing you permanently. Many people experience survivors guilt at this time. I try to reason with them that there is no basis for it, but I can understand it, especially when they see so many people with cancer around them who do not make it. But there is no reason to feel like it is because of something that you did, one way or the other.
I did have a type of remorse. All of those months preparing to die … can I say that there was a letdown that what I thought was inevitable did not take place? Or perhaps this is a type of survivor’s guilt. Day after day, week after week, month after month thinking that you are going to die, and then it just does not happen. This is where I have to bail out technically because it makes no good sense to me. Perhaps those who study such things can explain it.
On the other hand, I have heard from many who agree with me on another subject. Surviving cancer has changed us and make us very much different people. In most cases when I have discussed this with other survivors they will say that, while they sure would not want to go through the experience again, they feel like it made them into better people, and they are actually thankful for the experience. Of course, we can only speak for the survivors … I doubt those who did not make it could relate to what I am saying; and I have no idea how I would have fared in my final hours if that had been my fate.
There is something to be said for “living like you were dying.” It makes you think of those things that are really important in life and to put your priorities first – God, family, friends – what else really matters? All those things that you thought were important suddenly have no meaning at all. That is the theme of Tim McGraw’s song – listen to it closely the next time you have opportunity. The man singing the song is describing a close relative (his dad?) who during his last days wanted others to get what he got out of knowing that his death was imminent. It is extremely sublime, and many people refuse to even listen to it. My heart goes out to them – they are indeed missing something that is as important as life itself.
This Article is written Mr David B Brown. David has shared his cancer journey with us. Read more about Divid's Cancer journey.