Recovery after mandibulotomy

Hello a a, yes a very tough time for you both being at home now. Are the district nurses coming in to change his dressings? I remember thinking this level of pain can't be the norm and thought something must be wrong. I had lymphedema and was told to massage my neck and jaw but couldn't bare to touch the area. I did it because I had to. It felt so hot to touch and my neck felt like I had something tied round it. I did however end up with an infection and had to have the puss taken out.

With regards to the physio they showed me some exercises to do and gave me a couple of sheets with the exercises clearly showing the steps. This was so painful in the beginning but did get easier with time.

I often wonder if they know/understand how painful they are as I found it almost impossible to lift my head the way they advised and felt I was actually causing myself damage. In the end the physio told me to hold off on that particular exercise until I was ready.

I'm not sure if hubby has had a partial glossectomy as well? The tongue exercises are important and I still do mine several times a day as it tends to get lazy and doesn't work properly if I don't.

I still have numbness on one side and it's an effort to do them but pleased with myself when I have.

Sipping water often will help with swallowing but it will take time.

Sleeping, that was so tough. I propped pillows up and could only sleep on my back which was completely alien to me.

I put pillows between me and my husband to protect my thigh (flap was taken from there)in case he rolled over and touched it. I couldn't bare that being touched either due to the nerve damage. I do hope hubby has all the pain relief he needs.

Once the feeding tube was removed I could then sleep on my side even though that was the same side as the neck dissection and mandibulotomy but was more comfortable than the other side putting weight on my thigh.I can't remember exactly how long that was but think it was about 3 or 4 months.

I used to wake each morning thinking that it was another healing night I'd had and this day was another day closer to recovery.

Baby steps forward which I'm sure he'll find hard mentally and physically as he was so active before but he has gone through major surgery and can't expect to run before he can walk.

Wishing you both all the best and hoping the recovery goes well.

Little-fi

Hi aa, a great reply from Littlefi im afraid its still early days , I think you must get the pain sorted as this might help him sleep. It might worth asking if your husband can have physiotherapy as sometimes it can be over looked . I had the same with my left arm but it slowly improved with the exercise my consultant gave , plus I was not really in bad pain as I was on strong painkillers to begin with (oxy codone) but you must also get a laxative as a lot of these pain killers will cause constipation . Once you get the pain under control he might start to feel better in himself so channel his efforts into swallowing which a speech and language therapist (S.L.T) will offer advice , once again you might have to ask to see one , I was lucky as I had a dietitian  and a S.L.T from day one along with a PEG feeding tube which you husband has . He will get back to his active self again its just a matter of time giving his body time to heal and recover which changes from person to person , some things healed up and recovered quickly yet my fore-arm took ages to heal and recover . Wishing you and your husband all the best .

                                                                 Chris x 

Hi there

thank you for the last reply’s. Lots of useful information and good to know I’m doing a lot of them already. We had our follow up appointment yesterday where we were told they were confident all the cancer was removed. Really fantastic news. So now we are thinking what quality of life is my husband facing. He’s now been told he can start sipping water which he tried yesterday for the first time. Had to use a straw as he can only open his mouth a small finger width. He managed to swallow with little complication but has to take two swallows to take down a tiny sip of water. 

I cant imagine how he will ever be able to eat or drink properly with such a tiny mouth opening ? He hates the peg. We’ve been given different time scales as to how long he will be reliant on it this time but I guess they never really know. Still has very little use of his arm but is healing nicely. 

I realise it really is early days but I think my husband finds it useful to know what to aim for next. 

X

Hi aa, glad hubby's follow up was positive news. When he goes for SLT they may suggest tongue compressor sticks to insert between his lower and upper teeth to slowly help with stretching and strengthening the jaw. Over a few weeks he'll be able to increase the sticks. Although a tough exercise to begin with it really does work and you can see what an improvement it makes.

Best wishes,

Little-fi

Hi AA

Hi Paul

Thabk you for your message. I read it to my husband and he cried. To hear of you living life is wonderful and you look incredibly happy.  The similarities are so similar and sad and seem to be more common with the recurrence. We are six weeks on now from surgery and we are still having very difficult days but some small improvements. 

I realise every journey is different for each person but we are left wondering what quality of life my husband will have. His speaking is very impaired and  swallowing is proving difficult especially as his mouth only opens about 2mm. My husband is a fighter but I wonder how much push he has left. Obviously he’s on a peg as he was before and hates it but wondering how long he’ll require it this time. “How longs a piece of string” springs to mind!! 

Second time around feels more exhausting. Yet there’s little comparison to radio and chemo compared to surgery!  It’s all the unknown again!

Sorry to be so down. It’s been a very difficult and long summer with our 3 girls a cancelled summer holiday and little support so I am very grateful for this wonderful community. 

Onwards and upwards! 

Thanks again for the contact. 

X

Hi aa, sorry I didn’t see your private message until this morning. I have sent you a reply. 

hi all 

ive been told my lip split mandibulotomy op is on the 8th of july,well that was 3,4,5 days ago but nowts been confirmed yet,i was supposed to be getting a phone call as well  today about my,, pre op,, but i never got that neither. It seems to be hard work sitting about waiting and wondering whats going off,my minds all over the place,is there anyone out there who can give me any kind of thing to expect regarding recovery,eating hints and tips of what to expect,it would be much appreciated, by the way its base of the tongue cancer i have,what stages is it,,,   i dont know because nobodys been in touch..ho by the way this is the second time ive had base of tongue cancer,iv been clear 10 year,ish now 

well sees you later and ill txt with any up dates i get

Hi hugg 1, give it a couple of days and then ring them to see what is happening, recovery is not to bad and you will be surprised how quick things heal up,i would guess at about two to three months when everything has healed up so you will be on a soft diet to begin with including liquid food supplements. I cannot remember if you are having a peg fitted if you are all well and good. Take care .

                                                                                             Chris x