Abnormal

09Nov11

I’m sorry again that it has been so long since I’ve posted!
Since my last post, I have had 2 more operations- both left sided revisions- although the last was mainly to remove the old scar tissue.
I’ve had lots of ups and downs in the last few months and have wanted to post, but didn’t really feel ready to.

The last few weeks I’ve be pretty upset about how doctors view me.  I’ve had four operations on my neck- and with every operation, they cut out the old scar and sew the skin together… and every time that happens the skin gets tighter and the tension on my whole neck greater.   The doctors only see me as a theoretical person, not as a person with needs, emotions, and a life.  Following the last operation I was told I shouldn’t look to the right so that the scar could heal nicely.  This isn’t as simple as I initially thought and it actually crimped my style a lot (but of course that doesn’t concern the doctors).  Not only do I look like robocop but I can’t drive, bike, do any sports, carry anything heavier than 5kg, and I have to consider where I park my bottom so that I can always look to the left.  Of course on top of that, I have a large red/pink scar (the first 2-3 weeks I had lovely attention-calling steristrips).  I stand out.
Standing out didn’t bother me before- but I’ve passed my 2 year anniversary with my diagnosis and am starting to get impatient.
It seems to me that Germans enjoy staring, where Americans are more forthcoming and ask me what happened.  How do I tell them that I have cancer, but still not bring them down?  Or wait, should I even be worried that my diagnosis makes others uncomfortable?  After the big question was posed and I have answered, I’m always asked, “but everything’s ok now, right?”.  Well no, actually.  Either I get very pitiful looks, or the people decide they want to get to know me past my scar.  It’s ok- I know I have a big scar, but I wish that more people could see past it.
My scar used to help me to talk about my cancer- but with the more operations I’ve had, the reactions I get remind me more of my pain, than free me from it. Three operations ago, I had a small scar and little to tell; two operations ago, I had a large scar and a bit more to tell than after the first one; one operation ago, I had even more to tell, and now, after my fourth operation, I have too much to tell.  Talking about it helps me normalize it, but when people hear that I’ve had four operations and multiple radiations, they just look at me with such pity that I am reminded of how abnormal it is for someone my age to be in my situation.
I’ve tried scarves, but at some point the scarf has to come off- and hiding my neck feels like trying to fit in, only, I didn’t change my wardrobe…  I guess my neck has shaped who I am now- two years after my diagnosis- and maybe that isn’t so bad after all.

Well, enough ranting.  Here are some pictures of my scar’s progress:

one day post-op (3rd operation)

1.5 weeks post-op (4th operation)

3.5 weeks post-op (4th operation)

5 weeks post-op (4th operation)

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23 Responses to “Abnormal”

  1. 1 Art

    As far as I know there is a full line of products that should minimize formation of the scar tissue;some people have really great results with Mederma also if you have had an external beam radiation, it increases chances of forming keloid scars. From my point of view, your scar is not looks too bad on the outside; I paid attention to your eyes not to the scar:)

  2. 2 Allison

    Welcome back to the blogosphere! I understand how tough it is to always keep emotions/stories/thyca thoughts on the surface all the time (I’m nearly three years in myself, with a couple of surgeries and radiation under my belt). Simply remember that you don’t owe anyone anything: if they stare, stare back. If you don’t feel like talking about it, you don’t have to.

    For what it’s worth, I like to blame ninjas for causing my 8″ scar. :)

  3. 3 Jennifer

    Hi,
    I had bilateral neck dissection in March of this year and just saw your website. I had this huge incision in one surgery which swelled tremendously afterwards and put me back in the hospital in the Spring. I still have tightness and numbness underneath my chin area.
    I don’t find too many people with this type of incision even though my surgeon told me that it occurs about 40% of the time.
    I couldn’t tell from the pictures but does your scar start at the back of your ears? Mine does and goes all the way around.
    Any support would be greatly appreciated, and yes no thyroid for me either!

    • Hello Jennifer!
      Yep, my scar does go from ear to ear. What type of thyroid cancer do you have? I have found that the bilateral neck dissections are often kept for medullary and anaplastic thyroid cancer– or just general advanced thyroid cancer.
      How are you doing now?
      Keep me updated!
      Hungry

      • 5 Jennifer

        I have papillary thyroid cancer or at least that is what my pathology report came back as. I didn’t know that this type of surgery was more related to the other cancers but then again I am fairly new at all of this.
        I had a bigger time with my scar this past summer and wearing shirts that would reveal it, luckily I live in a state where there is only a few warm months!
        For the most part, I am starting to feel better except the tight feeling in the neck area yet and it feels like there is still swelling under my chin, the right side of the neck has less feeling and more numbness. My biggest fear is that it will never feel the same. Some days it feels like I have a neck brace on, that is the best way I can describe it and the tightness under my chin. Now I also not only have the incision from ear to ear but they had to go thru levels 1-4 in the neck which I think means it went as low as the collar bone and as high as under my chin line.
        I made another appointment with my surgeon for tomorrow to talk about the feeling/lack of.

  4. 6 Troy

    I just wanted to say a BIG THANKS! I’m about to go in for a neck dissection in a couple of weeks and your blog was really helpful.

    I loved your dry writing style (so many blogs are all hearts, flowers and thanking Jebus). The fact that you put photos up was great – seeing a lovely, normal looking person (with a scar) was really reassuring. I’d been googling images of neck dissections but it just brought up gruesome surgical images – I just wanted to see a person after surgery.

    I was 23 and a bit when I had my PTC diagnosis in 1998 (man I feel OLD now). It was a 1.2cm lump on my right lobe and in about 9 lymph nodes on the right side. Had surgery, iodine ablation and have spent the last 13-14 years thinking ‘well that’s finished’. Got 2 new PTC lumps in my left side – so it’s on again (left side dissection – level 2, 3 & 4).

    I’m also vego – so hearing about your low-iodine diet experiences was good. I have absolutely no recollection of doing a low-iodine diet last time! This time I’m trying to do everything to the letter.

    Hope you’re doing well – love your blog.
    Cheers Troy

  5. 7 Professor

    The simple thing like waering glasses move attention to your face from your neck:)

  6. I seriously wish you good luck but I am planning to do RAI as I dont want a scar on my neck. Having said that, they say RAI can produce more side affects compared to operation. Please do keep us updated how you get on.

  7. 9 Robs

    This isn’t going to seem like much help now, and I know you’ve been through a few more surgeries, but just going off the pictures, your scar looks remarkably like mine did. Eventually it’ll fade to everyone but you. I always feel like it’s sooo big no one can see it because that falls outise of what people can comprehend. Then I’m like, I had cancer… “do you have a scar?” Why yes, it’s that 6 inch thing lining the left side of my neck. Of course i’m also looking at the date you wrote this and realizing it was a whle ago, so hopefully things are getting better!

  8. 10 Marian

    I was wondering how you were doing? I have followed your story for a year, as my 19 year old daughter is traveling virtually the exact same path as yours. “Simple” Stage 1 cancer that turned out to be a T3 tumor and very agressive 1 year ago. Came back with a vengeance and she is currently scheduled for a neck dissection.

    • I’m doing well! I’ll get back to posting this week!
      Did your daughter already have her neck dissection? I hope everything goes well! If she’s worried about it, she can feel free to contact me- I did have my first ND at the age of 19 as well!

      • 12 Marian

        Yes, she did. On June 1st. 47 nodes removed, 11 positive. All structures were kept intact. Big ole’ scar, and her neck and shoulder are stiff, but no more pain. Did only the left side as testing showed the right side to be “clear” (we know how that goes!). I am glad things are going well for you. It is nice to know that life can go on, however interrupted, even in the midst of this horrific “easy” cancer.

  9. Hi!
    Read your blog about your experience with much interest. As I went through the diagnosis, surgery and now wait for radioactive iodine, i liked to be able to understand more what to expect practically, rather than just the “medical” stuff.
    How are you doing now?
    Good luck!

    • I’m glad my blog has been able to help you!
      I’m doing alright– a new growth has been discovered in my neck and I’m going to go in for another RAI– but I’ll do a larger blog post on that soon!
      How are you doing? Did you have your RAI yet?
      All the best,
      Hungry

  10. 15 Jessica

    Great Blog, I had right neck dissection 3 weeks ago to remove a recurring pleomorphic adenoma (benign tumor). The first time i had surgery they removed one tumor and the incision was very small. Last surgery i had, they removed about 20 tumors and decided to do a right neck dissection to prevent the tumors from growing back. Even tough im healing well I still have tightness and numbness underneath my chin area my scar is about 5 in and i started to massage it with cream but it feels very thick. Which cream do you recommed for scars?

    Thanks,

    Jessica

    • Well, I have used a huge amount of products after every operation, but I’m not so sure I can say that any one cream really helped! I think the important thing is to keep it moisturized and never really let it dry out. So what I used after my last operation was Vitamin E Oil before bed, and after taking a shower in the morning, I’d apply long lasting moisturizer– the reason being that the oil really does look quite oily and doesn’t really seem to absorb very quickly so if you’re around people, they’ll definitely know you have oil on your neck.
      I’m still very numb from my chin down to my scar– and I think there are only some very very very slim chances I’ll regain feeling there. But you’ll get used to it after a while. At first I was really upset about it because I didn’t really expect it and it was such a new and uncomfortable feeling not to feel my neck. I didn’t think I’d get used to it. But now, a few years after the first surgery, I have gotten used to it! And I only really think about it when somebody or something unexpectedly touches my neck.

      How are you doing now?

      All the best,
      Hungry

  11. 17 Jennifer

    I agree with Hungry on the neck feeling. I have a stretchy neck band that I wear at night because I have lymphedema from the surgery and the removal of so many lymph nodes in my neck. Some days I don’t notice the feeling and other days I do. My scar looks quite good and most people don’t even notice until I point it out to them. I have another WBS in the Spring of 2013 in which it will be 2 years post op for the Papillary Thyroid Cancer.
    Day by day is the only way to get over all of this for me, some days better than others but I try not to dwell on it.

    • 18 Marian

      My daugter has no feeling in the left side of her neck and most of her left ear. Doc says it won’t ever come back. It doesn’t bother her at all, her response was “more piercings.”. She is scheduled for a WBS and ultrasound next week since she still has measurable thyroglobulin, even after 3 surgeries.and 1 RAI. Agreed…day by day is the only way to get through this. Whoever said this is an easy cancer is nuts. Cancer is cancer.

  12. 19 Thyroid geek

    While touching or massaging of the neck is most commonly used to achieve sexual arousal there are other zones could be used for such purpose such as breast and abdomen, so don’t worry.
    Your blog helped me to recover from erectile disfunction

  13. 20 Marian

    Wondering how you were doing. My daughter has had multiple surgeries including right and left neck dissections, only 1 RAI as her yearly WBS showed no uptake…so pointless to do more. Last surgery was in March. Her thyroglobulin reading has not budged, stuck at nine after last surgeries. The Endo is a little perplexed also. Just wondered if you had any thoughts.

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