“Privately we may wonder if the despair and depression following a cancer diagnosis will dissipate soon, and so we wait for it to go away instead of telling anyone about it. We may just accept it as part and parcel of the disease and so it becomes a part of who we are. ”
For me, it was not the diagnosis nor the treatment nor the fear of recurrence that sent me spiraling into depression but the long term and permanent effects of chemotherapy, effects I was not adequately warned about.
The worst bit about it was that it wasn’t *my* depression, per se – but what I refer to as ‘biochemical fuckery’. Chemotherapy caused premature, sudden, permanent and severe menopause (similar to having an oophorectomy, my body was no longer able to produce any hormones to speak of); this sudden lack of hormones then caused a host of physical and mental problems that I did not know to expect, including crushing fatigue and depression.
Not having been warned about this made it that much harder to cope with, or even to recognize for what it was at first, and being advised to seek counseling or take anti-depressants for what was – to me – clearly a physical problem causing systemic cascade failures… o, that was insult to injury.
I’m not doubting that many people find dealing with cancer diagnosis and treatment depressing – I’ve been on blind dates that were more fun, myself – but I would question how much of the depression commonly seen after treatment is a result of internal processes (as it were) rather than a direct or secondary purely biochemical result of treatment. Even when there are legitimate reasons for depression or anxiety – and I would wager cancer diagnosis and treatment counts – I can’t help but think that they are not infrequently worsened or deepened by the aftereffects of treatment, and that we would all be well served by having these effects acknowledged. It is, at least for me, much easier to deal with biochemical depression when you *know* it’s not about you.
I knew my depression was not a result of my fear of recurrence, nor my scarred breast, nor my no longer being in active treatment – I was quite happy to put the ‘slash, poison, and burn’ year of my life behind me. It wasn’t the persistent lymphedema in my left arm, nor the entrapped nerves, nor the chemo hair re-growth (sparser, salt & pepper, and not my ‘normal’ texture) that had me contemplating suicide on a more than daily basis – I wasn’t happy about any of that, I’m still not, but I can cope.
It took me far longer than it should have to realize the root cause of my depression, and far longer than I would have wished to be treated for it. That could have been easily avoided had the doctors acknowledged and informed me about this possibility from the start of treatment, and if they had been willing to recognize that my depression was a direct result of treatment and treat me accordingly.
My belief is that there is a tendency to discount and/or minimize the impact of treatment (specifically of chemotherapy) both before and after care – and, quite possibly, the belief that if women are informed of this side effect as a possibility, they will then manifest the symptoms (you *know* how suggestible we women are!). Or the belief that likely effects of treatment will discourage women from pursuing the “best” course of treatment, the course of treatment most likely to lead to disease free survival (no matter the cost to quality of life).
This does us all a great disservice.
It assumes that patients aren’t to be entrusted with their own informed decisions about their own lives; that reducing the risk of recurrence trumps quality of life issues, and that the doctor is more capable of determining what factors are important in maintaining quality of life for a patient than the patient themselves.
For me, choosing chemotherapy was an utter mistake, and the impact on my quality of life close to disastrous. It wasn’t the process itself, though that was wretched enough; it was the aftermath. And while I was warned about the immediate and direct effects of chemotherapy, all of which were transitory, I wasn’t informed about the permanent effects. In fact, when I brought up possible long term effects before treatment, my concerns were minimized or dismissed.
ERT (estrogen replacement therapy) has definitely eased the worst of these effects, but I’m left with relying on medication (and a doctor who will prescribe, harder than you might think to find) for my quality of life, something I’m not particularly happy about. I may have to take Effexor in order to continue receiving ERT – it’s something the doctor wants me to take, and she has made it a condition of prescribing ERT. So far I’ve avoided it, but I’ve an appointment coming up on the 12th and I’m sure it will be brought up again – and if it ends up being a condition of ERT, I don’t really have a choice but to take a medication I don’t want and, in my opinion, don’t need; a medication with its own host of ‘side’ effects.
These ugly trade-offs and compromises (and the neuropathy, and the impaired cognitive function, and the host of other lesser changes) have been- and continue to be and will always be – part of the true cost of chemotherapy.
For me, the reduced risk wasn’t worth it.