I found finishing chemo and being told I was in remission the most difficult time emotionally. This happened almost 18 months ago now and what I describe below is not how I feel now.

It was worse than the initial diagnosis time. Worse than actually going through chemo. Worse than being in hospital with life threatening infections.

I felt devastated somehow and yet was “expected” to be ecstatic.

And yet of course I WAS glad to be given more time to live.

But as treatment ended I felt abandoned.

I felt that nobody cared any more if they ever really had.

I felt so upset that if this was the best it could ever get (I got to the point where there tests could not currently detect the cancer) then why did I still feel so terrible?

I could not imagine maybe even forty more years of being weak, regular infections, unable to work, not functioning properly, bad allergies, my brain no longer working like I wanted it to, and the sure and certain knowledge it would come back and that in the meantime even a flu could kill me due to my damaged immune system (this before COVID-19)

I heard “you have a ⅔ chance of getting at least five more years before needing any more treatment” and could only think that ⅓ of needing treatment sooner was a high risk. Would you go bungee jumping if there was a ⅓ chance the rope would break?

I was also hit by a delayed reaction to the diagnosis itself. As well as the beginning of a dawning realisation that I would never get back to the way things once were. I had up to then buoyed on by stories of dramatic improvement in fatigue experienced by some others on treatment.

I had been clinging onto what turned out for me at least to be a forlorn hope that I might be able to become a fully functioning member of society again. It took months but I had to accept that was highly unlikely. Even now I sometimes find myself thinking what would it be like to one day be well enough to work again. Hope deferred makes the heart sick.

And there were flashbacks, trauma from the weeks and weeks of hospital stay in different times.

And I felt alone.

I felt misunderstood.

And sometimes people say the cruelest things. One person told me that in their view the only reason I don’t work is that I’m lazy. Others tried to get me to “be more positive” which just angered me.

And add into the mix what I call the tyranny of the positive which is unspoken and even spoken pressure to be feeling in a certain way. “You must be so happy…!” Actually NO I was angry that this happened to me, disappointed that my life felt like it’s over, and secretly wondering if the gift of extra years (which I do appreciate) will actually be bearable given how I actually felt at the time.

Nobody told me that there might be some improvement in how I felt in the coming months. Or if they did I didn’t hear it. And there has been some. But for me when one thing improved a bit something else like a new infection came and hit me. So it has often felt like a few steps forward then some more back.

And of course COVID has made things worse. It makes me feel so isolated and utterly alone. As others talk animatedly about all the things they have done or want to do and maybe share photos I find myself feeling angry at their “insensitivity” to my plight. And I feel paralysed.

I even found starting social distancing walks highly stressful. I once was a gregarious outward looking person who had loads of friends. Or I thought I did. I now feel I have lost almost all of them. And almost everything. I prefer to spend most of my time alone, quiet, and end up doing very little in the way of social activity.

Things have improved since that initial shock of finishing treatment and being told I was in remission.

But the changes have been slow.

It has also mostly been about me learning to handle my emotions a bit more (though at times it is still a bit like trying to herd cats!) But it is also about expectation management. Now I try to live in the day rather than thinking too far ahead. And I also try and notice small improvements and hope for other small improvements to come rather than expecting that next week I will somehow miraculously feel “normal”.

I still find it frustrating when people offer false hope and say things like “I am sure you will get back to normal soon”. There is no getting back to normal. There is just living with my situation and trying to gradually get a bit fitter, and see what doctors can do to improve some of my symptoms even if just a little bit. Taking things one step at a time means that I do not feel so overwhelmed as I did when treatment ended and I was told –

“Great news! You are in remission!”

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