Not my normal self anymore

[Alimay]

Its been 9 months since I had my 12 hour cancer operation. I had squamous cell carcinoma located under my tongue on the right of my jaw. I had my jaw bone replaced with my right fibula.

I couldn't wait to get out of hospital afterwards to return to my old job. There was a problem though, I had nowhere to live. 

I used to live with my father until he died and I wasn't able to stay at the family home anymore (long story). A long time friend offered me their car garage, in which I stayed for about 6 months until they no longer wanted to have me stay there.

I then moved to a temporary location while I was working and my belongings were in storage.

I was referred to a specialist in Oct 2023 but wasn't able to get an appointment date until March the following year (being last year). Immediately was referred to hospital for surgery.

So, as abovementioned, I wanted to get out of hospital and back to work, like normal. I did have to wait 3 months for the moon boot phase. 

Was welcomed back to work, but, I found it difficult to communicate. I was just barely able to be understood. (I have never been a person to show my emotions or ask for help, being brought up by a strict mother; be independent)

.... there's more, but I'm at a stage now where I need help.

Work cut back my shifts to 2 a fortnight. (!!!)

I cant eat solid food - I sourced information on dietary basis.

I live in my bedroom in a share house, whilst my belongings are still in storage.

I haven't let myself cry for myself.

Anyway, just thought I'd share somehow as I feel it's hard to seek personal face to face help.

Chin up. 🙂 

[Ashley_ccnsw]

Hi Alimay,

Thank you for joining the community to get some support and understand. It sounds like it's been such a challenging and hard time for you during all of this. I truly hope you get the support you need from the community here.

I know you said it was difficult for you to communicate while you're healing, but if you need more focused emotional support, you can always call our 13 11 20 line and get a referral to our counselling service. We will do the best to try and help.

Please take care of yourself and know I'm thinking of you.

Ashley

CCNSW

[Stell87]

Oh dear...

So hard.

I am on this site because I'm looking for feedback for free Flap operations.

They want to put my fibula in my jaw..

I am worried about the after affects..

From reading your post it seems yours went well.  ??? 

This is a positive 👍💚and I am hipeing in the time that has past that your life has taken another turn and things have improved...

Yours Sincerely 

Stella 

[OzStu]

I had oral scc that spread to lymph nodes in right side of neck five and half years ago.  I had radiatoin and chemo for that and it got rid of it.  Early this year,  I had a lesion on left lower gum.  It turned out to be scc and it had spread to jaw bone.   In june I had the procedue you're having.  Removed left jaw from back, right up to nearly front of chin.  There is a titanium plate in there as well as my right fibula.  After surgery, in which to removed a fair amount of lymph nodes from left neck as well, it was determined that I should have radiaton treatment and chemo as well, due to some characteristics of the cancer.  I had already had radiation to the area before,  so  this was a very dicey thing to do.  I got through it,  and am now 8 weeks post radiaton.   I've had complicatoins due to rads adn chemo,  couple of infectoins in jaw,   and the swelling from the radiation was extreme,  second time radiation has much worse reaction.   The functional and cosmetic result at this pont is pretty good,  apart from the fact that I now have lymphdema and so I'm wering a compression garmet to bed and as much as possible when I'm home.  Cusom made and it's quite comfortable,  but I look like I'm heading out to rob a bank with it on.   Lymphadema probably wont be as bad once I've completely healed,  but will probably always be an issue to some degree.

If you aren't having lymph node removal and radiation,  then you can probably count on having a good functional and cosmetic result without the cocmplicatons that I've had.  When I take my compression mask off,  I look in the mirror and I'm very happy with what I see..  I speak well, and eat well.   But after a couple of hours without the compression mask,  my left side lower face starts to puff up with fluid.   If it weren't for that,  I would consider myself as good as new.   Some of this is a result of still having inflamation from the radiatoin,  and healing,  which means  my body is sending more fluid to the area,  so it wont be as bad as it is now ia  few months hopefully.  I'm hoping I can get away with just sleeping with the compression mask and doing couple of five minute massage sessions a day to keep fluid away.   Anyway,  it is what it is,  and I will just have to get used to whatever I have to do to stay sympton free in future.   The most important thing I suppose is that I remain cancer free,  which only time will tell.

[Stell87]

Well You sound very upbeat for someone who has been through the wars...👊💪👍

Good on You,positivity is good medicine isn't it...

That cancer was being very persistent but I'm thinking with all your treatments and your attitude towards recovery I reck9n you've kicked it to the curb.No more cancer.

And you make me feel a little confident to do the free flap..

Thank you very much for sharing 

Yours Sincerely 

Stella 

[Stell87]

Hello Again 

Hey I'm wondering, did they take out your nerve when they did that free flap??

And did that leave you completely numb ?

Or is there phantom tingling??

Or ??,

And how are you travelling??

Have you been okay??

I hope so..

Hope you have a comfortable sleep tonight..

Thanks 👊 

Stella