head and neck cancer

[Marg246]

I have had  reconstruction of the mandible , neck resection , removal of Rt. fibula , skin graft from Rt femur . Radiation -34 fractions . It has been 2 and a half years . I now have a few white patches in my mouth . I do not do well when having biopsies and am a high anaesthetic risk . Does anyone else get these patches in their mouths ? 

[Stell87]

Hello Marg

Well you have been through alot.

How have you been lately??

If at all possible could you please give me some feedback regarding the reconstruction of your mandible  .

They want to replace mine with my fibula...

Thank you Yours Sincerely Stella 

[Marg246]

Hi Stella I have  through Cancer twice now . Along with 2 long Surgeries . Each were 13 and half hours .

Each time I awoke in Intensive Care . The first Op was removal of 3/4 of my Mandible . My Rt. Fibula and graft and skin graft on Rt. Thigh . Also Tracheostomy and Neck Resection . 

I was in Hospital for 16 days . I could swallow , breathe on my own and was on a soft , pureed diet and walked with a moon boot . I could also talk . 

The Physio came the next day and got me out of bed . I walked with a frame and a boot . I ended up being able to eat with a plastic spoon ( BigW party section has many colours . 

I had 36 fractions of Radiation as my Margins were too close together . For almost 5 years I did well . I continued my checks at the Maxio Facila Clinic . A second Cancer was found and this time my whole Mandible was removed . Also Lt. Fibula . Skin graft to Lt. Thigh . Another Trachaeostomy and Neck Resection . 

My Recovery has been harder the second time . I was in Hospital a month and had a Peg tube inserted as I could not swallow . Walked with a frame and moon boot . It took me 3months to start to slurp water with a straw . Speech therapy is wonderful . I had peg feeds for 10 months . Then supplements for another 4 months . 

My Mobility is now good and my swallowing is stronger . I still use a straw to drink and am on a Puree diet which I eat with a plastic spoon . The Radiation charcoled my Mouth . So I don't tolerate ordinary Cutlery . 

I have survived again and intend Living a lot longer . My Speech took a lot longer the second time . I still have difficulty speaking on the phone . 

Do you have any specific questions .? All the best for your Surgery . Be kind to yourself . Rest . Sleep as much as your Body tells you too . 

Marg 

[Stell87]

Thanks for sharing Marg

 During my radiation and chemo I had a peg and do recall longing just to sip water..

I bet you really appreciate being able to slurp again...

 I'm concerned about a few things like how much bone will they take along with how many teeth?

And will my body accept it will the blood flow will the flesh live or die??

After recovery will I be able to open my  bite or  chew ?

Where will my scars be ??

How will I take pain relief if I can't swallow?

I know you can't answer these questions even the Surgeons can't really say as everything is quite unpredictable..

The only thing that is predictable is the location of the jaw..

I'm trying to remain calm and sensible but I keep coming back to the fact that try as they may there are no guarantees it will go well.🥺🤔🙃

[Stell87]

Dear Marg
Thank you again for sharing all those details..
And I'm very glad that you have a great attitude and do love life despite its trials.i admire your resilience x Stella

[Marg246]

My scar is under my Chin and can't be seen . First Op all but 4 teeth were taken from my Mandible . Second Op Surgeons removed all of the Mandible and remaining teeth . Another scar where your Fibula is removed and the Flap is taken . Mine healed really well . I am proud of my Scars . Bothe legs the Scars have faded .
My Body hasn't rejected my Fibulas and the Surgeons take the long Vein as part of the Flap . My Leg Circulation is good and my Flesh is healthy .
I am not able to open my Mouth very wide .
So Stella for both Ops I was really scared . But I told myself it will be a good outcome and I am in good hands . So be scared , cry , scream and shout . But still stay Positive .
You will learn to adapt to the Surgery . All the Best .
I am here if you want to keep chatting .

[Stell87]

🥺🥺🥺your feedback is invaluable.
Thank you so much..
I must go to work now.
My consultation with surgeon is 28th of October.
I will be in touch ,hope you have a nice weekend.
Stella 💚

[Stell87]

Just quickly is there a big dent in your legs from Flap?
I only have skinny legs😁🙄
Is there any talk of dentures or implants?
How long ago was your last surgery.
Bye for now 💚

[Marg246]

Yes both legs are now the same length and have a small dent . It is not overly bad looking .
I was to be fitted with a Denture but the second Cancer appeared .
You can have Implants or Dentures after your Mouth has healed
My last Surgery was 17 months ago . I am glad I have been able to help .

[Stell87]

Thanks again for your lovely manner Marg.

Are you contemplating getting some kind of teeth at some stage??

Or with your limited mouth opening have you ruled it out??

Do you chew ?

I cant  even get that chewing action happening 🙃🙄

I will be 56yrs in December ,in thinking age dosnt real factor in does it??

I am an active person....

Hey I'm thinking all that radiation and surgery you've had has removed all your cancer👍💝💕