7 weeks out of treatment fatigue and future plan

Hi Kellie. Welcome back. 
I can say that I suffered bouts of radiation fatigue ( the sort that poleaxes you out of nowhere ) for a good six months. You can’t fight that. Just rest when that happens. 
I can’t comment on the Palsy. Dies your speech therapist have any ideas?

7 weeks is really early. I wasn’t right for a year but felt really much better by six months. 

Hi Dani,

Thank you, that's kind. 

Okay this is definitely what the fatigue is doing just completely coming out of nowhere so at least I know this is normal. The weird symptoms I get that I didn't during radiotherapy like the husky voice comes and goes makes you wonder when you didn't get it as a symptom in treatment. 

They've said they wouldn't really recommend exercises for a palsy as they wouldn't want the other parts of the lips doing what they shouldn't and just said to keep trying to purse my lips trouble is without me getting the muscle stronger the palsy will always be as bad as it is now and it impacts nutritional intake. 

I've looked into a lymphatic drainage massage as I wondered if the extra fluid could also be restricting movement my surgeon said to try although he wasn't overly keen when I asked how often he said once a month.

Also to update you we are getting a Thor machine I was so very happy to hear this! Thank you for putting us in touch x

Staggabee said:

Also to update you we are getting a Thor machine I was so very happy to hear this! Thank you for putting us in touch x

Oh that’s wonderful. 
Do you have a lymphodema clinic attached to the hospital? They might be best place to advise you how often to massage but I must say that I massaged mine away several times a day. 
Is the palsy due to nerve damage? It takes a long time for nerves to repair so don’t despair just yet. 

Hugs xx

I know a friend of a friend has just had surgery and the team were talking to her about it won't be quick enough for her but they suggested a hand held one like mine

No it's separate from the hospital a community one but they said wait list is around 8 months. 

My surgeon cut the nerve that allows feeling but saved my other nerve (cannot remember the names) he said my nerves were likely annoyed and bruised so I can be hopeful then thank you x

Hi Kellie. How does the palsy affect your ability to eat. Is it chewing or does food dribble out of the side of your mouth?

I have a similar issue but not due to palsy. I have incomplete lip closure on the right side of my mouth  due to several ops for jaw cancer. As a result  food comes out of the side of my mouth and when I drink I dribble a lot. It has improved slightly over time as i have improved my technique. I have found with drinking that thickening the fluid with a thickener recommended by my speech pathologist has helped tremendously. The fluid stays in my mouth now rather than coming out of the side of my mouth. It was a real game changer. I can only eat puree and I have found that when I get the right consistency the food does not come out of the side of my mouth as much. It took quite a bit of trial and error and I think that I now have eating and drinking worked out so it is the best it is going to be for me. Over time I have come to terms with this issue but it still takes a bit of thinking through when eating out. It does not stop me from going out with family to restaurants and eateries but I eat before I go out and take a thickened drink with me which works out fine. 

Fingers crossed that the palsy resolves itself but don't let it hold you back in the meantime. You become a problem solver in these circumstances and you will work out how best to manage the situation for your particular circumstance. 

Best wishes

Lyn

Hi Lyn,

Thank you for your reply it's much appreciated.

I am able to close my lips but find when I am eating soft foods (between level 5 and 6 currently) that it will dribble out of my mouth and as that part of my lip and chin is numb I don't tend to notice until it drips onto my clothes unfortunately. 

I am still under speech therapy but have two one would like me to remain on puree for now and the more senior is keen for me to eat soft foods as my mouth opening has reduced and she would like me to keep my jaw active. I do chew on my left side - I have no teeth on my right side now after my hemi mandiblectomy but as my new tongue is also attached to that flap it's rather difficult to move the food around my mouth to the left hand side to chew. 

Most days I have a good enough seal to drink normal fluids without dribbling a little so am very thankful for that I just wish I'd known about the palsy prior to surgery trying to eat again after radiotherapy has been tougher than post operative.

It's a great help to hear your experience and others though it makes me not feel as worried as when you ask they doctors they tend to have the same answer either telling me to give myself some grace or saying that it's not important at the moment but it really is to me it's how I look and how I see myself in the mirror I also love food and the taste changes are enough really am just hoping I still like cheese as much as I used to haha. 

Thank you again

Kellie x

Hi Kellie. In many ways your experience sounds very similar to mine. I eat sitting in front of a small mirror on the table as the same as you I don't know when I have dribbled food out of the side of my mouth. I have found this really helps and I can dab my mouth as needed to clean up the spills. I also wear an apron when eating at home otherwise I have a lot of washing to do from the food that accidentally gets spilled. When I go out I take a small hand mirror with me and when I drink a hot chocolate I can keep an eye on things to save the embarrassment of having hot chocolate down my face and not knowing. I was encouraged by my speech pathologist to try and eat food with more texture such as pasta, rice, soft steamed veg and I tried hard for ages. However it just didn't work for me and I would have the food going around in my mouth and it just wouldn't go down. Not good enough chewing or enough moisture in my mouth to make it work for me. I tried for ages but then decided that eating was becoming too much of a chore so reverted to minced moist or puree depending on what the food is. I manage well with this and am able to keep up the calories topped up with 3 Sustagen drinks a day. I have found new tastes that work well for me so although I no longer like the taste of tea and coffee have found that hot chocolate works well. 

With experimentation you will find new tastes that are just as good as the old ones. I used to love chocolate but find it difficult to eat in the traditional form but have found a chocolate mousse does the job now as a substitute. 

It takes time to adjust to the changes but you do get there in the end and I have found my new normal is quite acceptable. 

Do your jaw exercises regularly and fingers crossed your mouth opening will not reduce. I still do mine and although I do have a reduced mouth opening because of my ops it has not deteriorated. 

Best wishes

Lyn