I started out with a cancer marker of 1287 in July. On Monday after my most recent test I was told it is down to 3. I still have 4 more chemo treatments to go after having already done 8. A few times my neurafils have been too low or I would be finishing the 12th treatment right about now.
Am I classed as a survivor yet?
Hi swim 72
I decided I was a survivor soon after I was diagnosed. I read a little bit about how people responded and what they thought of their situation and pretty soon it became clear that I was the only one who could decide this issue.
So I decided to see myself as a survivor pretty early on. It was very effective in developing a sense of self in the middle of all the medical regimes and other people's reactions. So effective that when my oncologist told me I was in remission ten months later my first reaction was 'So what?' I was a survivor already, being in remission didn't change anything for me.
Are you classed as a survivor yet, swim 72? I think it is you who needs to answer that for yourself. Don't concede that level of control over you to the medical industry.
That is my response to your question at 6.30am today.
There are likely to be other responses, I am sure.
Yes, I agree with Harker. I was fortunate to have a doctor who told me a week after diagnosis that it was my choice how I wanted to call it re survivorship - but as far as he was concerned, I was a survivor from the moment I began treatment. He said to me, what's the alternative? And I guess I decided that being a victim of this disease is not what I'm prepared to be - so survivor it is. A friend said to me, don't let this cancer define you - you are not the cancer, you are far more than this disease. I found that helpful too. The changes the disease has brought to my life are often things I have no control over, but I have had control over the personal growth that has occurred as a result of the experience of the disease. So yes, I think Harker is right - it is a choice that each of us makes, and we make it when the time is right for us. You be what you want to be! Whichever you choose, you are still amazing to have travelled the path you have!
And of course, that's just my opinion and everyone will have their own - cheers
There are a lot of levels at which you can respond to your question. Harkers response is very similar to Stephen J Gould's in his wonderful essay "The Median is not the Message" (Google "Median not the Message" and you will access several sites for this essay. Gould was diagnosed with mesothelioma of the stomach which has a median survival of eight months and then went on to live for another twenty years. He decided that he had the characteristics of those who are in the long lived tail of the statistical curve. Like Harker he decided that from the point of diagnosis he was a survivor. (However, it is important to remember that his deciding this made no difference to his survival. He would have lived that twenty years anyway, but it made a lot of difference to the way he thought about it. The evidence is in that thinking positively does not increase survival, so we do not have to beat ourselves up if things go wrong and blame ourselves for not being positive enough.)
Then there are those who get a bit more technical and say it is not about our mindset, but from the time of finish of treatment you are technically a survivor.
Others take the attitude that the is a point following treatment when you no longer need follow up. The tests and specialist agree that you have no evidence of disease, you don't need to see them, so from that point on your are a survivor.
I don't regard myself as a survivor - I still have my disease so I have not survived cancer - ergo I am not a cancer survivor. I have lived with the disease for more than twelve years, I am well past the median survival time for the statistics on my disease. I am past my use by date to the extent that one eminent oncologist even suggested that the original pathology was wrong - it wasn't. I have good specialists who have been prepared to be aggressive in their treatment, to offer me experimental treatment and to discuss various treatment options with me.
So there is no simple answer to your question "Am I a survivor yet?" Like Harker and Gould you can be a survivor from day one. Like many you may be a survivor when you have finished your treatment, (This is the perspective oft he Australian Cancer Survivorship Centre at the Peter Mac) or you can be more circumspect and say I will be a survivor when my specialists pat me on the back and say you don't need to see me any more.
Exhortation to Apprentices in the Art of Navigation: “When so ever any Shipmaster or mariner shall set forth from land out of any river or haven, diligently to mark what buildings, castles, towers, churches, hills, downes, windmills and other marks are standing upon the land…..all of which, or many of them, let him portray with his pen, how they bear and how far distant." A. Ashley, 1583
I had a clear scan 2+ months ago but had to keep going with the regime to kill any microscopic cells. The doctor only told me I have been remission since October at my last clinic. I haven't had an end of treatment scan yet.., it's in another months time. I started to call myself a survivor after treatment. I needed to stay in battle mode during the last three cycles so I could get through treatment. But really, I think I was technically surviving cancer from the day they told me I had it and had a treatment plan.
I'm hoping one day, I won't think of myself as a survivor and that the survivor part is just part of my new normal.
I think the word survivor is empowering. A lot of other life threatening illnesses don't have that collocation.
But at the same time, I'd like to do more than survive at some stage.
Re staying positive. What is "positive"?
I wasn't the world's most positive person before I got sick. I had to make the best of a shitty situation. I had a good prognosis but it's still 6 months of intense chemo that wipes you clean - literally, with the possibility of a bone marrow transplant. There's still that chance.
The fear and anxiety were not sustainable.
Laughing through chemo, finding joy in really inane stuff, made it easier.
I would probably have still made it, but blocking out stuff that got me down meant that I had the physical energy to get through treatment.
I'm waffling, but my answer is- use the word survivor when or if it empowers you.
Having finished Chemo for fNHL a year ago, I'm thinking the same question. The 3-monthly checkups are going fine, but I've always got the thought in the back of my mind that fNHL has a very high relapse rate.
As soon as my cancer was surgically removed I felt like a survivor. Despite what my surgeon and oncologist thought ,I knew it would not get me.Nearly 15 years later and it still hasn't.
Yes Swim72 you are a survivor,hugs Ron.
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