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WillHay Offline OP
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Evening all,

So today is 6 day post surgery and I am delighted to post that Lillian has responded really well, she is well on the road to recovery

Surgery started at about 8:30am last Monday morning and took almost 12 hrs during which they had to removed 4 teeth (one needing to be drilled), some jaw bone and also a portion of tongue. Whilst they were in that region they also removed some lymph nodes as a precaution and the plastic surgery team used some of her left forearm to replaced the portion of tongue that was removed.
We went into see her about 60 mins post surgery and it can be overwhelming when you see all the tubes and sensors attached to her however though Lillianwas very very groggy and only coming around from the operation she was able to give us the thumbs up!!!!

We have been going in every day and sometimes twice at day and each day we have seen steps forward - after three days the drainage tubes from her neck were removed, also the tracheotomy tube was reduced in size and a speaking valve installed and she is now able to talk with us through her windpipe! Today was the first day she didnt need morphine so another step forward she is still in pain and they have her on a strong paracetamol solution and blood thinner injections. Lillian has been able to sit up and go for short walks around the ward so all these are positive signs. The medical staff are really happy with her progress even from the second day onwards and tomorrow she is being moved from the HDU [High Dependancy Ward] to a general ward so that is great news.

Still on a drip fed feed and will be so for a number of days to come. The results of the biopsy should be back mid-week and the medical team will review and we should get feedback shortly after sp fingers crossed.


So thanks for all the good wishes, I will post another update in due course

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Will

Wonderful news. Thanks for the update and looking forward to the next one. I keep sending more prayers your way!

Best
Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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WillHay Offline OP
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Hi all,

Everything progressing nicely stitches removed from neck and skin graft on the arm. On Monday Lillian started on puereed (so) dinner such as chicken, carrots, potatoes and stewed apples and custard

Lillian is still on a drop feed at night and I reckon once this is removed she will be ready for discharge, so happy days

More importantly the biggest news is that the biopsy of the removed tongue section shows that Lillian does not mean post operative treatment so no radiation !!! Best Christmas present ever!

Will update again further, stay safe

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Happy to read your wife is progressing during this journey. I know it’s not easy, but a positive outlook makes all the difference.

I was diagnosed with Stage 3 tongue cancer in early May of 2021. Not a smoker, or heavy drinker. Needless to say, I was shocked, and had one day of “why me”? I then chose to remain positive moving forward and was very calm on the day of my 13 hr surgery. Half my tongue was removed, nodes removed, skin graphs done. Six weeks of radiation, of which included one day of chemo each week. I am still unable to eat normal, so my daily intake consists of puréed foods, or smoothies. Making the daily smoothies gives me the most calories I need to reach daily calorie intake. Is it easy? No. But, I find the daily things to keep me happy, and I’m alive. To this day, I am fortunate to say that my test are coming back clear.

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WillHay Offline OP
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Hi all,

Just a brief update it is now 5 weeks post operative and things are doing really well, relatively

Tracheotomy hole is almost closed, lower arm skin graft is healing quite well though Lillian does have some pain in a part of her wrist. The wound on her stomach has healed well too

With regards to the cancer it transpired that it was in the jaw bone but some of the adjoining tongue area was removed for good measure - still some pain and swelling in the area but this will take months to settle. Told it will be 6 months before her teeth (4 were removed) and hbe addressed. As mentioned before the best news is that no radiation is needed

When it comes to eating still on soft diet as swelling in mouth makes it hard, Christmas dinner will be a pasta based meal with stewed apples and custard for dessert

So all in all it is positive. Take care everyone

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Will

Thanks for keeping us updated. So pleased that the recovery is going well and no radiation is needed. Best wishes for a safe and enjoyable holiday. Stay safe and keep the faith!

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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WillHay Offline OP
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Evening all, Touching base with you all. Just over 12 weeks since the procedure/ operation and we have a follow up appointment with the surgeon who removed the portion of tongue/ jaw

We were originally told the cancerous cells were in the tongue but it seems it was in the jaw however they took some of the tongue too

So where are we at?
Eating wise Lillian doing OK and even back to having a lovely cup of tea. Food still gets trapped from time to time but all food stuffs are on the menu from chicken, chips, bagels and cake!!!

Her neck wound has healed really well and so has the tracheotomy opening. Feeling on the side of her mouth/ jawline and up to and including her right earlobe not there yet.

The biggest issue is the location on her left arm from where the skin graft was taken, it is still quite sore especially on the bend of the wrist and along what seems to be a tendon. It is constantly given her pain and causing her upset. Lillian is quite over protective of her arm, I encourage her to use it or do some simple exercises but not if it hurts her. It restricts her mobility in that she cant drive and is nervous of walking the dog in case Buddy pulls on the lead. So in all recovery is good but the skin graft location is still an area of pain/ anxiety. There is also loss of feeling on her left thumb too so maybe nerve damage or very slow recovery of the nerve.

Has anyone else had this? As in the skin graft being the location of long lasting pain?

Take care

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