Hemiglossectomy, Hemi mandiblectomy and selective right neck dissection surgery

Hi Kellie welcome from me. There’s others who will hopefully pop on re the ops. But when you start radiotherapy I’ll be able to  help with tips there. My feeding tube was ng but I’ll sedation is usual for  the pegs  again sm sure others will poo on with tips

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Welcome to our small family community we’ve got your back now

.hugs Hazel. 

Hi Hazel,

Thank you for your kind message I have read your profile really inspiring with regards to getting through the radio so thank you for the comfort of knowing you'll be here.

Originally we had planned a NG for the ops but they said would be in for 7 days then I'd need peg/rig for radio (very likely need and I think I would rather have it than not) 

It's all a shock when your first diagnosed we thought I had a pyogenic granuloma as my biopsy in December was benign.

Ops are definitely nerve wracking (I worked in theatres many moons ago) 

Again your kindness it's really appreciated and I'm hoping you are well 

Kellie x

Hi Kellie. 
A welcome from me too.
I can’t help with the op but can with the RT… to an extent. My treatment was aimed for my throat which comes with different side effects but there’s a fair bit in common.
We have a very supportive member here, Lyn, Sophie66 who lives in Australia. She has had surgery to her jaw which was very similar to what is planned for you. I’m sure she’ll pop in to say hi and offer what she can  

Meanwhile stay with us. There’s lots of help and always somebody to talk to. 

Hi Dani,

Thank you for the welcome, I have also read your page everyone hear is so very inspiring it's very warming to read.

Thank you for the support with Radio too I'm going to need all the support/advice/tips I can process.

I think some of mine will be around the right side of the neck, I have one enlarged lymph node but until it's removed won't know if the cancer is present but suspect they would target my neck anyway as a mop up. 

Thank you again for the warm welcome and I hope you are doing well 

Kellie x

Hi Kellie . Yes wise decision. My trust don’t regularly fit pegs but u had to consent  to ng tube if needed and it was my lifesaver from end of week 3. Treat it as an insurance policy hope you don’t need it but if you do it’s there. 

I'm very well thank yiu living a great life. 

Hazel x

Hi Kellie, welcome to this lovely supportive forum but sorry that you have to join us under such worrying circumstances. I had jaw cancer so not quite the same as you but am doing fine now and living a very happy life. In 2013 when I was 59 I had a mandibulectomy to my right lower jaw and a neck dissection and also 6 weeks of radiotherapy. I recovered well after the op and eventually returned to work and continued on until I retired aged 65. I did not have a PEG as the radiotherapy was aimed at my jaw and not at my throat area so I can't comment on that aspect of things. However for another op in 2019  for a maxillectomy I had a tracheotomy. It was only left in while I was in Intensive Care and removed before I went onto the ward. I had continual care wile in ICU and it was regularly suctioned to remove any mucus so don't panic. It was a bit of a shock not being able to speak and I became good at making hand signals and sometimes writing the odd thing to make myself understood. The staff were so attentive and really reassuring. Removing it was no problem and not at all painful and I was just left with a small hole with a dressing covering it. I had to press on it when speaking until it healed to make a seal so I could speak properly. It healed very quickly and I have had no issues with it. I had a nurse come to my house when I was discharged to look after it, change dressings etc which was also very reassuring. Trust in your medical team they are so experienced and the staff in the hospital are absolutely amazing so be reassured you will be in good hands.

Best wishes

Lyn

Hi Lyn,

Thank you for sharing your story with me, you have been through so much and as others have replied very inspirational.

It's a rare form of SCC I've been told that I have and they suspect it's travelled from the tongue to soft tissue in the right jaw. 

My team had only discussed surgery with me then radiotherapy after.

Thank you for the reassurance regarding the tracheotomy and the ITU stay, I have always had a bit of a fear of indwelling devices and especially a Tracheostomy. They have said they will try and wean it as soon as possible and would rather put one in then perhaps have to do it quickly whilst I am in ITU. I feel that the not being able to speak complication increased my anxiety as I feared I may be in pain and not being able to say so.

I'm so very pleased to hear you recovered well from the surgery and are still well now

Hopefully I can find a little bit more research around the peg from reputable places - I've avoided Google.

Thank you again also for the welcome

Kellie x

Good evening Kellie, please try not to worry about having a trachy i had one for a while after my first operation, i must admit they are a bit uncomfortable but i cannot remember being in any pain. Its just going into the unknown that makes us anxious but you will be in good hands, i also had a PEG fitted under sedation, and like you, i don't like needles so i just shut my eyes or look the other way, again its just the waiting for it to be done, i just keep telling myself it will all be over in a blink of an eye. Wishing you all the best next Wednesday, take care.

                                                                                  Chris x

Staggabee said:

Hopefully I can find a little bit more research around the peg from reputable places -

Macmillan has some info here. 

https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/nutritional-support/enteral-nutrition

Your hospital might have something online too

For example 

I was treated at Swansea and they do t have any but Cardiff do

https://cavuhb.nhs.wales/files/endoscopy-patient-information-leaflets/peg-leaflet-2015-updated-pdf/

Hi Chris,

Thank you for your reply and reassurance, I keep thinking the needle issue will resolve soon but each time I realise it's still there.

For my operation on 01/04 they are putting a PICC line in so I can have my daily bloods through this which is helpful and takes a little bit off worrying about daily needles. 

Am hopeful that the sedation works well with the peg fitting and it can be used post op.

You are completely right though it's the anxiety of the unknown I have a lovely kind team.

Hope you are well

Kellie x