Guest blog: What to do when the trust is gone?

Guest blog: What to do when the trust is gone?

When the trust is gone…

Anyone will tell you that once the trust is gone in a relationship, you’re in trouble. It can be very hard to build that trust back up again, a trust that probably took years to grow and nurture. Can a relationship even survive a serious trust test and, if so, how?

This is how I’ve been feeling a lot about my relationship with my body since my breast cancer diagnosis in September 2020. Prior to this I would say I had the usual low level health anxieties and I was pretty vigilant with my check-ups, smears etc but overall I did trust that my body wasn’t going to completely turn against me. Earlier in the year I’d found a sizeable lump in my thigh and had it checked out which led to an MRI scan (thankfully all innocent). But even during that process I hadn’t really been that worried or lost too much sleep, believing that it would all most likely be fine.

When I went to have my left breast checked in September I was also pretty calm. I’d felt a lump or area of hardening but it didn’t seem dissimilar to what I had experienced when breastfeeding my first son in 2018. As I had just finished breastfeeding my second son (born March 2020) I attributed it to that. Deep down I think I thought, surely you don’t get breast cancer out the blue, with no family history, at age 38, in the middle of a global pandemic, when you’ve just had a baby? Sure. So when I sat in the waiting room of the breast clinic for that first check my heart wasn’t racing, my palms weren’t sweaty and my trust in my body was still very much intact.

My diagnosis

All of that changed the second the radiologist had a look on the ultrasound and the mood in the room immediately shifted. Anyone who has been through this will know all too well that chilling moment when you know something is wrong before anyone has confirmed it for you. A week later my breast surgeon did confirm it with those words “it is breast cancer”. And that was it, for me and my body it was the “I’m sorry, I’ve slept with someone else” moment. The trust was gone.

The next few weeks were the whirlwind blur of biopsies and scans and appointments. At this stage I don’t think the breakdown of trust really hit home. In fact, as various scans came back negative and confirmed that it did not look as though my disease had spread beyond the breast I felt somewhat safe and reassured.

Soon after I had my mastectomy and reconstruction surgery. Prior to the surgery, the checks we had done of the lymph nodes via ultrasound and 1 biopsy had showed no sign of disease. I was praying the surgery would confirm this. Unfortunately, it wasn’t to be and 5 positive lymph nodes were found meaning chemo and radiotherapy were definitely on the cards.

The fear I felt and the decimation of trust

It wasn’t the treatment itself that initially put the fear into me, it was the fact that suddenly the reality of the cancer escaping elsewhere became all the more real in my mind. I’m not a scientist and don’t pretend to know about the mechanisms, but in my mind lymph node equals a potential route of escape for the little buggers and the positive results didn’t sit well, despite my surgeon reassuring me that the nodes are just doing their jobs by catching the cells. For me, the trust was now decimated. It was like finding out that your other half’s indiscretion was not in fact a one-off, but had been going on for months.

The extent to which this had affected me became clear a few weeks later. Recovering well from the surgery and waiting to start my chemo, I started to experience some stomach pain. Okay, I thought, maybe indigestion, period pains, see how it goes. Days passed and then a week. I can’t lie, I lost a lot of sleep, I conjured up terrible thoughts in my mind about cancer spread. I had zero trust in my body that this could be something innocent, zero. It didn’t matter that I had had a clear scan of my abdomen in the diagnostic process, I couldn’t rationalise it. But I was also embarrassed.

I didn’t want my doctors thinking I had lost the plot, so I just stewed on it. Until eventually I couldn’t anymore. I contacted my excellent surgeon who was very reassuring and brought me in for some checks and scans, all of which were thankfully clear and it’s now cleared up.

Whilst I was obviously relieved nothing was found this was a realisation that (a) my stress and anxiety since diagnosis was likely manifesting in physical symptoms and (b) that my relationship with my body and the trust we had built up over 38 years had taken a serious hit and would take a lot of rebuilding.

Rebuilding the trust

I am trying to work on this now and I am very fortunate to be receiving some psychological therapy throughout treatment. It feels very difficult and daunting though to work out how to re-earn that trust and how to be appropriately vigilant without being overly fearful of my body. Since diagnosis, I have felt it important to educate myself on the signs of secondary breast cancer for my kind of cancer (lobular) and have found ABC Diagnosis a great resource for this. I believe that knowledge is power so I don’t want to not know these things just because they are hard. But equally I know that the above stomach episode was not helped by knowing that a more common area of spread in my case is the gastrointestinal tract.

So, I don’t know if what I have described is something others feel, I hope I’m not alone. I want me and my body to have one of those happy endings where we can say that we somehow managed to get past the trust breakdown and rebuild it slowly, slowly.

I don’t have any answers right now, but at the moment I just try to tell myself that if I can’t trust in my body just yet, instead I can (a) trust in my doctors (b) trust in my treatments and (c) trust in the future. One day at a time.

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