Post-Op: Finding the New Normal

October 2, 2014

Today, I feel down.

Thyroid cancer is definitely not the easy cancer to have. We are still waiting to find out the histology results from my thyroidectomy. The surgeon took out some of my neck muscle around the malignant lump, just to be sure there was a clear periphery. He also took out the nearby lymph node to test it. I haven’t been able to sleep properly for the last three nights. The sleepless nights started when I stopped taking the Percocet medication, which although mitigated my pain, also made me groggy and loopy. I have many thoughts. Too many thoughts.

While I struggle to find a comfortable sleeping position, I wonder when my neck will stop hurting. I wonder why I don’t feel like my body is mine. I wonder why I’m so tired, all the time. Then, I worry about whether my replacement thyroid hormone medication is dosed correctly. If my fingers start to tingle I wonder whether my calcium levels have dropped. I wonder when I can go back to the gym. I wonder why sometimes I feel light-headed and like I am going to pass out. I wonder why no doctor has asked me at any step of this process how I’m feeling emotionally and mentally. This means that they can’t direct me to appropriate resources if I need them.

I think about all the things I have read on health in my public health journey. Health is not just physical, it is more evident than ever to me now. The endocrinologist, the surgeon, the nurses – everyone was focused on getting this cancer out of me. Nobody asked how I was processing it. Now that the cancerous devil is out, they all seem to be happy. I suppose they have done their job? However, I feel the worst that I have ever felt about this cancer. I think that when I received the diagnosis, yes I was upset but I also automatically went into fight mode. Adrenaline pumping, my mindset was – let’s figure out how to deal with this. Now, I’m exhausted. Battle scar and all, I just want to lie down and give up.

I Feel Down Odd One OutI hope that next week the results come back in our favour, and that the cancer hasn’t spread. But, I need the people around me to recognize that even if that is the case, the battle still isn’t over for me. In many ways, it feels like it is just beginning. People haven’t really been letting me wallow for too long because I have constant “nadhasitters” who are taking turns entertaining me. That is probably a good thing, because I have too much time with my thoughts during the sleepless nights. It feels like my life is on pause. But really, this is my life happening right now, it is just not what I would like it to be. It is important to recognize why I am feeling the way I am, although knowing the theory and understanding why my body is responding this way does not help with the frustration too much. I suppose this is a part of finding the new normal for me.

So aside from being an update, in an endeavour to not wallow in my misery, I have been (not so) subtlety promoting mental health throughout this post and I hope it gives some sense of how I’m questioning what the role of health professionals is. Where do job descriptions begin and end? Throughout writing this series, “Cancer and Me”, I have been trying to address some larger issues. There is still so much to improve in terms of systems that support people with health issues – both from a preventative and treatment perspective.

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11 Responses

  1. Pingback: Hypothyroidism | Nadha Hassen | Public Health, Social Justice & All Things Community

  2. Pingback: Results and Report Cards | Nadha Hassen | Public Health, Social Justice & All Things Community

  3. Ramzeen says:

    I’m shocked that do-gooders expect to be paid. Is this another angle to “money talks”? I think the visitors to your blog (like Wegagurl) are therapeutic. Perhaps you two should bond.

  4. Wegagurl says:

    Hi.
    Hope you are doing a bit better. It does take time, and to be honest, this is just the beginning.
    Nobody ever asked me how I was feeling, not my doctors, not my family, not my friends. I think family and friends try to run for the truth, I think doctors do their jobs, which is surgery to take cancer out, and they expect that to be enough. What’s even worst, as they say thyroid cancer is the good cancer and that it is barely cancer, they don’t even understand how this affect us emotionally, physically and mentally. Just being hospitalized and having surgery, even if it’s not because of cancer, it’s already a traumatic experience.

    Now, about your concerns on hormone replacement, if you are on levothyroxine, it takes 6 weeks for the body and hormones to feel the action of the medicine, it’s not like if you have been in hormone replacement for 3 days, you will feel the effects now. Also, if you forget to take your pill one day, that doesn’t mean you will feel bad that day, your body won’t even notice. Actually, we can stop taking the pill for 5 days straight before we start feeling something odd, and it takes 6 weeks before we go totally hypothyroid.

    It will take time for doctors to adjust the hormone levels. Maybe, if the hystoliogical report comes positive, you will be put in “suppression therapy” which means doctors will try to put your TSH levels below 0.1, so in case there are any thyroid cells left, they don’t even dare to produce any hormone. This mean you will be some sort of hyperthyroid and doctor will decide for how long you’ll stay in that therapy. Some doctors put patients for at least 3 years in this therapy, my doctor for example, put me for 1 year in this suppression therapy and now he wants me to go back to normal TSH levels. But my point here, is that Doctors will play with your dose of levothyroxine as they wish, and that put our hormones upside down, and that’s something they don’t truly understand either. Gain weight, mood swings, hot flashes, brain fog, it’s all well documented to be thyroid problems, but whenn you tell your doctor all your symptoms they will say “you’re levels are as they should! You should be fine!” *sigh*

    Finally, it’s totally fine to feel tired and exhausted, and with some pain In the neck, I mean, you just got surgery and you lost your thyroid. Your neck will feel funny for couple of weeks or months, try to move it as much as you can, so recovery of mobility won’t talke long.

    And well, if you have a good relationship with your family and with your doctors, talk with them about how you feel.

    Finally, support in the web is of great help. Lately I feel that my biggest supporters are strangers, but truth is, it takes to walk in the same shoes to understand what you are going through.

    This is the beginning of a new fight, life will be different, but as someone on twitter said, it doesn’t mean it’s over, and we will get better. :)

    • Nadha says:

      Hi Wegagurl – Thanks very much for your message. It helped clarify some of the questions I’ve been having, even after doing my own research. I am on Synthroid now so we’ll see how it goes. The endocrinologist and the surgeon already prescribed two separate doses to start off with and I just ended up on the 125mcg by chance. I’m glad you’ve at least got some good support from ‘strangers’ with thyca, it is a difficult thing to explain to someone who isn’t going through it. Sometimes I want to snap at people who are trying to help just because in my mind, it feels like they don’t get it. Take care and thanks again!

  5. Ramzeen says:

    One thing that struck me was how much your medical vocabulary has been enriched. “We are still waiting to find out the histology results from my thyroidectomy. The surgeon took out some of my neck muscle around the malignant lump, just to be sure there was a clear periphery.” says it so succinctly that it’s almost poetic! I would’ve thought there’d be no lack of Counselors over there. Perhaps there’s one in the local mosque who could give you some insight into the “why’s” that are bothering you?

    • Nadha says:

      There are lots of counselors but many are very expensive ($150/hour) and the ones through the community centres have a long waiting list. I have been in touch with a social worker who offers a sliding scale based on the ability of someone to pay but it is still $60/ hr – almost 7000 SL rupees. The mosques close to where I live don’t have such services but perhaps a little outside the downtown Toronto area. It’s a thought.

      • Silver Lining says:

        Nadha, if you really want someone to talk to, try contacting Sheikh Musleh Khan at the IIT. You don’t have to meet in person, I’m pretty sure you can have telephone conversations too. You can google his name along with ‘depression’ if you want to get an idea of his compatibility with you as a counselor. I doubt there’s much of a charge if any.

  6. Mona says:

    Hi strong, amazing Nadha,

    I’m shocked that no doctor has asked you how you feel. I wonder whether there is something we can do about this in a more direct manner…..like highlight this fact for them? Maybe bring THEM some reading material about the effects of mental health states on our physical outcomes? I know how hard it is as a health professional to be over-worked and under staffed, and I’m not sure doctors get much training in the psycho-emotional elements of patient health, but not even one question about this? Throughout the whole process? There must be some avenues to addressing this? Perhaps even highlighting it to those responsible for the curriculum as schools of medicine? Perhaps we should get your blog to your surgeon’s attention :)

    • Nadha says:

      Hi Mona ! When I met my surgeon to get the final stitches removed, I pretty much started off with “I am feeling so sad and exhausted, I want to cry all the time and I can’t sleep”. He suggested I speak to my family doctor/ the doctor at the U of T Health Clinic who found the lump in the first place. I know post-surgical depression is also a real thing so I’m trying to be aware of it and gauge how I’m feeling overall over a longer period of time. You’re right that being over worked and under-staffed is such a problem (links back to why on earth they can’t make it easier for qualified professionals from other countries to enter the system here). Schools of medicine should have this in their curriculum, it’s ridiculous if it isn’t but I don’t know for sure. Would love to hear from everyone I know in med school right now…

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