Cheek & Jaw Cancer Update

Hi,

my hole virtually closed up but I was still getting infections

I had one bad case where my neck was swelling, it was getting really painful, the swelling even started spreading to other side of neck then one evening I coughed, the hole opened up and the vilest smelling liquid you can imagine came out. I squeezed my neck a bit and it was virtually coming out in a stream rather than just drops.

Although the smell was absolutely hideous, once I had squeezed a bit out the pain had completely disappeared.

I ended up in hospital for another week and a few weeks later had a minor operation where they cleared some more gunk out of my neck and put what's called a pack in.

The pack is a gauze like thing soaked in some really powerful stuff which heals you from the inside out.

I then had to go back every week for 3 or 4 weeks where the nurse would pull the gauze out about an inch at a time until it was all the way out and then the wound just closes up on its own.

Hardly had any problems since then, I've still got a bit of lymphoedema and my neck/cheek get a bit warm sometimes but only had one course of anti-biotics in the last 2 years.

Sounds like he may have a similar op and pack if he keeps getting infected, it's only a minor one though, I was only in hospital for 2 nights which was a relief as it was the week before Christmas

Thanks so much for  your reply.  My son has had a few infections as well as lymphoedema.  The hole is still leaking, and is sometimes a bit smelly.  He has to see his consultant in 3 weeks time, so will mention it again to him.  Thanks again for your words of encouragement.  I'll pass it all on to my son.  

Take care and stay safe.  Have a good Christmas x

I've just read you blog.  Really good.  Great family network.  All the best Carran

Thank you 

It get's a bit boring towards the end, which is good as it means nothing bad is happening 

My mum was amazing, she's 83 but was regularly driving me to the hospital and I stopped at her house for about 3 weeks when discharged from hospital

She would make up my fortisips for me, clean my syringes, mix up my soluble paracetamols, do everything for me.

I came out of hospital the 2nd time after bleeding all over the bed and spare bedroom carpet to find new carpets, new bed covers, new bedside table and a new bell on it for ringing her if I wanted anything 

I took the bell home with me when I went home, but my wife soon hid it away 

Hopefully update my blog over Christmas

My son keeps getting infections and he feels he can't move forward with eating.  His mouth is very sore so he finds trying to eat anything other than soup etc very difficult.  He was at the hospital all day Tuesday as he was in so much pain with the latest infection.  He was given stronger antibiotics, but they don't seem to be helping.  He has an appointment with his consultant next Thursday and is hoping the problem can be sorted.  He's had x-rays and ultrasound but there doesn't seem to be anything causing the recurring infections.  He was told on Tuesday that he has a weakened muscle in his cheek which stops him from moving food around his mouth, but he was having the infections when he was fed through the tube.  I just hope that Thursday he can get something done.  He's very down at the moment, as he feels he's not making any progress.  Thanks for reading the ramblings of a worried Mum x

Sorry to hear he's struggling with this. Has he had bloods recently to see how his immunity is doing? Might be worth checking. 

Hopefully Thursday brings dome answers.

Sending hugs, Gill x 

Hi Gill came up with a good suggestion hasvhis bloods been checked. Plus you say sore has he ulcers. They can stick around for a long time . Is he on any painkillers beg oramorph that can help him with swallow. It takes a good while to eat anythjng like normal . Maybe he’s trying too hard to eat normal things ? I existed in sift foods for quite a while. Eggs were my best friend in fact I likened it to nursery food. Eg if a baby / toddler wouldn’t eat it neither would I    Hope he gets done answer on Thursdsy. 
Hazel 

Not good news. I hope they have taken a swab. Some infections need multiple attacks. Hope they get on top of it. 

Thanks everyone for your replies.  He still has some ulcers in his mouth which does make it difficult to eat.  He's on oramorph as well as morphine patches.  Like everyone has said sometimes infections need more than one course of antibiotics, he's just waiting for Thursday to see what his consultant has to say. 

Thanks again everyone, it's so reassuring to be able to come on here and get support from you all x

Hi Gill

I'm really sorry to read that your son's still getting infections.  They can be so problematic sometimes to get on top of.

In terms of your son's pain when eating, I can't remember whether you said he has any Difflam?  You can get it as a mouthwash but also as a spray which would probably be the better option for your son.  It helps to anaesthetise the mouth before eating.

Linda x