I am cancer free. I should be rejoicing. Since I received the all clear (lymph nodes and margins) a week ago I have experienced all sorts of emotions, but none of them joyful. Why on earth don’t I feel joyful? The truth is, there are many reasons. Multifactorial aetiology as I would say to my students! Now, don’t get me wrong, I am very glad that I am cancer free and very grateful to have received the care and treatment which I did. No more mileage-accruing trips to the hospital, biopsy needles, anxious waits for results; no more second guessing when surgery will resume (Covid-19 has a lot to answer for), frantically seeking solace in online forums and helplines. But in their place I am left with a bit of a void. Everyone thinks I am well but I am not. My wound is still healing (skin looking red and thin and I’m worried about dehiscence and late complications), my sleep is poor and I still need an afternoon nap. Lassitude is my companion. Turning to the Internet to try to find what’s ailing me, I discover that these feelings are common. I have self-diagnosed with survivor’s guilt, “life after cancer” syndrome (my term), and post surgery fatigue.
Survivor’s guilt is a well recognised phenomenon in response to having “survived” an event which has killed other people. Holocaust survivor Primo Levi suffered terribly with this, expressing his pain and horror through writing books, always asking why did he survive when others far worthier than him died? He never found an answer. Someone pointed out to me that from day one of being diagnosed with cancer you are a “cancer survivor”. In medical terms that makes sense, as we talk in terms of survival curves (the curve gradually edges down when people with a given condition die). The example below shows the % survival of premenopausal women with early breast cancer over 12 years after surgery. It shows that more women who took tamoxifen survived than those who took placebo.
This rather unexciting looking graph does little to explain what survivor’s guilt feels like. This is what it felt like for me a few nights ago when I felt the urge to put it in writing:
“I’m not sure I even qualify as a cancer survivor. My invasive breast tumour was only grade 1 and a few millimetres in size, hiding in a huge labyrinth of DCIS. I have read books and blogs written by “survivors” who have endured so much more pain and suffering than I have. I only needed a mastectomy (and chose to have an immediate implant reconstruction as I didn’t want to be flat) and have now been declared cancer-free without the need for either chemo or radiotherapy. I feel a bit of a fraud. It pains me to say this, but why, as humans, do we always compare our own plight to that of others? There will always be people both better and worse off then me. Fact.
“I feel anhedonic, tired, lacking in energy and motivation. Glum. Can’t be bothered. Where did my mojo go?”My journal 27/7/20
I detect a large dose of imposter syndrome there. It’s as if I am not worthy to be called a cancer survivor because I didn’t have to go through as much hell as some others have. What am I complaining about? I’m not dead! The cancer didn’t kill me like it has others. Ah, complex guilt.
Life after cancer
I’m cancer free! What’s not to like? I can get back to normal life. Hang on. What is normal life? Is it even possible to get back to “normal”? I think not. Yes, I can gradually resume activities I used to do before I had cancer, but I am forever changed, physically and emotionally. I have lost a part of myself. I have gained an implant, a scar and some pig skin. I have to take tamoxifen every day, a constant reminder that the cancer might come back in my other breast. Not that that worries me just now, but the knowledge of the increased risk will always be there. Peter Harvey, clinical psychologist from Leeds speaks brilliantly about healing after treatment has finished in this article.
I’m in that limbo of having been discharged from breast clinic whilst still not having healed enough (physically or emotionally) to go back to work or to do any of my sports which keep my mood buoyant. The skin which is stretched over my wound is tight and red and my pectoral muscle keeps twinging. I hope that’s normal. I feel guilty that I don’t feel well enough to go back to work yet, even though everyone keeps telling me how well I look. I worry about my energy levels and whether doing this or that will cause wound dehiscence, a seroma or a late infection of the implant (my literature search tells me that this is common from 6 weeks to 1 year after surgery). Maybe I think too much…
I think I am in the recuperating stage (see Peter Harvey above) at the moment, and hope soon to be convalescing with a blanket over my knees at the seaside!