You know, when I am all done with all this cancer stuff, when the last treatment is over, when the last scan has been read as clear, I will never really be done. What I mean is, I will have to follow up regularly for at least the next five years, if not forever, depending on how things go. It will be like a little shadow over my life probably for the rest of my life. There is a post traumatic stress element to having gone through any illness like this that is not likely to disappear any time soon. How am I ever going to have what seems like a normal ache or pain without overthinking it? What if that little ache is my cancer coming back? I already HAD normal-ish symptoms seemingly consistent with menopause and overwork….and they turned out to be cancer! Yes I know, I know, the growth was not a normal symptom, but you see what I mean about the rest of it right? You see? I am not even done with treatment yet and I am already pre-thinking about overworrying. Oh for heaven sake.
Being diagnosed and treated for cancer is in itself a stressful and potentially traumatic situation. Patients experience a whole range of feelings including fear, sadness, anger, anxiety and adjustment issues. There is such close association with cancer patients and post traumatic stress that the DSM-IV post traumatic diagnostic criteria were expanded to include diagnosis with a potentially life-threatening illness as a possible stressor significant enough to induce PTSD. The DSM-V PTSD diagnostic criteria allow for specific implications of cancer- related post traumatic stress, but there is still a lot more research needed in this area. Studies done by Mehnert and Koch showed that 54% of breast cancer patients viewed cancer as a traumatic stressor. Andrykowski and colleagues interviewed survivors of lung cancer and found that 37% viewed their diagnosis and treatment as a traumatic stressor. There are other studies that reflect similar results. Still other studies correlated the incidence of cancer related post traumatic stress to lower socioeconomic status, young age, limited social support or dissociative symptoms regarding the cancer experience( Not being able to recall any cancer related discussion with the doctor.) The bottom line is that cancer is considered a traumatic stressor by some patients. There just isn’t enough data out there right now to describe the entire course of cancer related post traumatic stress, but we know that it is out there.
So, now that we know it exists, what do we do about it? I think the key is integrating psychosocial support into the acute care phase and survivorship phase of cancer care. I think it is important to make therapy and mental health care directly available in the oncology setting, not as a completely separate venture in a different location. A lot of patients, myself included, have a difficult enough time getting to their regular oncology appointments, much less a whole separate group of appointments with a mental health professional. I think it is also important to take a detailed mental health and trauma history on every cancer patient from the very beginning. You need to know what background you are dealing with even before the intense stress of cancer treatment begins. If a patient already has an extensive trauma or psychiatric history, they are a set up for post traumatic stress with cancer treatment. Maybe if you are able to highlight that risk ahead of time, the patient can already be directed into mental health treatment before the stress of cancer treatment takes root. It is also important to continue to monitor distress and stress as treatment is ongoing. Ongoing screening for distress is already a component of the National Comprehensive Cancer Network’s clinical practice guidelines. There are specific pathways for management of acute stress, traumatic stress, and adjustment disorders. I think this is the very checklist that I have to go through every time I go to the doctor’s office. I also have a list of mental health support resources, but they are in a different location than my doctor’s office and it is still up to me to seek them out and make arrangements.These checklists and protocols are great, but they mean nothing in the grand scheme if the availability and connectability of mental health treatment is not easily and readily available. I still feel like it would really be up to me to bring up if I am having any mental health issues when I truly think it is the doctor’s role to watch for these signs even before I would bring them up. As a cancer patient, your mind is whirling all the time. You really do need some one watching out for you to clarify some things that you cannot clarify for yourself as readily. I am not saying that cancer patients are all helpless or anything. I am just saying that we may need a little extra support or supervision than most with everything else going on that potentially distracts us from caring for ourselves. Post traumatic stress is real. Now that we can identify it, we need to get better at addressing it.
Traditionally, I would say this in reference to men…and to sell more Mr. Clean specials at the laser center! But now, I have joined the club. A healthy dose of cancer shedding, being tired of constantly sweating, a clever idea from my daughter Katy and voila! I have joined the club! Granted, it has only been an hour since we publicly shaved my head on video, jamming out to 80s tunes and then shared it. But, you know, I feel weirdly relieved and liberated. True, this could all be the result of rash, steroid and chemo-induced flight of ideas decision making. It’s possible, but I truly don’t think that’s it.( Tune in tommorow to see if I am crying over my pile of hair. I’ll own it if I do..lol)
Seriously, I feel kind of liberated. On top of that, when I ran outside to howl for a minute, the breeze felt FAN FRICKING TASTIC! YESSSSS! I kind of danced around the yard a minute and let the moon bounce off the top of my head with relish. I think it boils down to the fact that this was MY decision on My terms. This was a weirdly welcome alternative to the constant worrying about when the next clump of hair was going to come out in public somewhere. It really was. My poor husband, on the other hand, is a little bit stunned. I think, for him, this is a smack in your face, unavoidable reminder of what is going on. I have to give him a minute. I have to remind him that it will be ok……and that I’m…still…..me. Have a fantastic, freeing night!
I have been pummelled lately with the adage that when you have cancer, your whole family does to and everyone that cares about you. At first I was like NO WAY! and THAT’S RIDICULOUS! No one else has tumors all over their body! No one else is getting poison shoved into their veins. C’MON! And then, I took a minute and got over myself and realized that that is not what that statement means. It doesn’t mean that everybody else is going through all the physical aspects of the cancer. It means that they are on their own emotional journey because the cancer is affecting someone they care about and they feel kind of helpless about it. They are having their own whirlwind of thoughts and feelings all the time as well. They have sorrow and sadness and anger all at the same time too. They need counselling too. The anger to me is actually sadder than the plain old sadness. I notice with my own family that I get caught in the crossfire of all of those feeling more than I care to. It is strange though, because, even though I get a lot of anger directed toward me, it doesn’t mean that they are actually angry at me. The way they describe it is that they are angry about what is happening to me and they don’t know how to express it. Well, combine that type of misdirected miscommunication with a dose of my current oversensitivity( and me being off prozac to boot) and we have a real mess on our hands at times. Suffice it to say, we are keeping the therapy offices busy right now and it still doesn’t always work out the best. It is a work in progress to be sure. Having said that, now that I have a better understanding of what that statement means, I can make better attempts at not taking their emotions personally. So maybe, if they can try a little harder not to misdirect and I can try a little harder to understand that they are going through stuff too, we can do a little better together.
I had no idea just how much guilt comes with chronic disease. This may not be true for everyone, but it is definitely true for me. I just can’t seem to balance the whole “just concentrate on getting better” side of me with the side that is worried about everybody else, my business, other people’s schedules, my patients, and just generally letting people down with all of my limitations. Sometimes I think it takes me more time and energy to process all the guilt and worrying than it would just to be sick. I get it. That sounds ridiculous, but it is the truth for me. It is just a tough balance for me.
You know what I think would be a good idea? We should sit patient’s down, after they have had a chance to digest the news of their new diagnosis, and hook them up with a mentor or counsellor to sit them down and help them start to wade through and plan for all the other complications and stuff that comes with any chronic illness. It might make it less overwhelming than just having everything smack you in the face as it comes, while you are busy trying to “just concentrate on getting better.” I get that some cancer patients have patient navigators, but the main role of these individuals is to keep the patient on track in terms of appointments, tests, and treatments. This is useful to be sure, but the real trick is managing all the outside life stuff that is on top of the tests, etc. I say we start offering life navigators too because, in most cases, the damage that is done with all the life fails, failed relationships, missed work, and unpaid bills far exceeds whatever damage the cancer inflicted.