Cancer free – now what?

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

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.

Overall survival of patients on tamoxifen compared to placebo. Bramwell, V et al. (2009). A randomized placebo-controlled study of tamoxifen after adjuvant chemotherapy in premenopausal women with early breast cancer (National Cancer Institute of Canada-Clinical Trials Group Trial, MA.12). Annals of oncology : official journal of the European Society for Medical Oncology / ESMO. 21. 283-90. 10.1093/annonc/mdp326.

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!

My closest approximation to convalescing at the seaside!

7 thoughts on “Cancer free – now what?

    1. My cancer was grade 1 so didn’t need radio or chemotherapy thank goodness. I went to Burnley for clinics and surgery which was a bit of a way though!

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      1. Hmmmm….starting in late October ….. Pat’s Grade 3. Lumpectomy only partially successful followed by mastectomy, chemo and radiotherapy involving many trips to Barrow, Lancaster, Preston, and Kendal (which was the friendliest). Bad side effects. Been in self isolation (apart from hospitals) since early March.

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  1. Hi Marisa, thank you for your blog. Much of it resonates with how I am feeling and it is so generous of you to guide others who face the same rocky path.
    That was very helpful explaining the action of Tamoxifen. More complicated than just thinking of it blocking oestrogen. I started it about 3 weeks ago, Used to think of it as the enemy – sending us into an unwanted, early menopause but putting my positive pants ( or best wire-free bra) on and thinking of all the positives to my well-behaved boob!
    And no I don’t think you have had an easy journey at all. Any diagnosis during Covid is isolating and lonely. You can’t even hug your friends! Your surgery was huge.
    I’m feeling quite stressed about returning to work, needing to be a confident clinician but feeling changed ( and aged) by the treatment.
    I also didn’t feel elated after (2nd) surgery when the margin was cleared, when Hubby was saying ‘it’s out’. I had Gr2 invasive lobular disease. Slow and sneaky. Am still pushing to get MRI in addition to mammo for annual follow up.
    Not sure if you were gifted a heart-shaped cushion and drain bag at your hospitals? My surgeries were at Whitehaven. Local sewing group of ladies makes them. The kindness and generosity of strangers is wonderful.
    Lastly am setting up 5KYourWay in Cumbria which runs alongside ParkRun. Have a look. Something positive to emerge from this difficult time.
    Best wishes and thank you for your blog.

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    1. Thanks Shona,
      Sorry to hear you’ve been through this nightmare too. Ugh! Blogging has certainly helped me to get my head around it all and also allowed me to inject some humour into the whole experience. Yes, I got a lovely bag but no cushion. The bag was so nice that I kept it. Not that I need any cushions! Tamoxifen is a really interesting drug. I was dead against it to start with but then started reading up on it and got quite excited to find out about its many and varied mechanisms of action. I might even contact VC Jordan to tell him how much I appreciate his original post-doc work. When are you going back to work? I’m planning on September as I am still feeling very tired and a bit sore, plus my wound is being slow to heal. I can’t wait until it’s fully sealed and I can go wild swimming again…
      Take care of yourself and enjoy the 5k runs. I find that my implant is much heavier than my natural boob so I think I will need to invest in a heavy duty sports bra!!
      Love,
      Marisa

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  2. Congratulations Marisa! And thank you for your writing. It’s really inspirational and informative. My wife is awaiting is awaiting biopsy results. It’s all new to us and scary. We live in Malaga. Covid has really slowed everything. Congratulations again and keep up the great work.

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