Mouth and Jaw Cancer

That’s brill news that he’s been allowed home Just baby steps now some days may be 2 forwards and one back but everything x for him. 
Hazel

Thanks Hazel, he has said when he feels a little better he is going to do a scrapbook with photos of his progression and his journey.  He wants to help others with similar problems to see how, although everything is a little daunting, things will get better.  We're so proud of how far he has come, obviously still a long way to go, but as you say, baby steps at the moment. 

That's brilliant news Macfarlane - thanks for letting us know how he's doing.

Wishing him all the best in his recovery.

Linda x

The important thing is to get as fit as possible before the radiotherapy starts

2 or 3 20 minute walks a day and make sure he doesn't lose too much weight before then.

Also make sure he does the mouth exercises they give him

Thanks, at the moment he's having a few problems with walking due to the surgery to remove bone from his leg to rebuild his jaw, but I'm sure it will improve as the days go on.  However, he can manage the mouth exercises so it's a start.  Thank again, hope all is well with you x

Hi Terry, My son is home now, but struggling to eat much.  He tried some soup yesterday but it was too spicy and has made his throat and neck swell.  Also with this heat he's having difficulty sleeping and the rig tube is causing him some issues.  He's got an appointment this afternoon with Mr Walton so will hopefully get some answers as to when his radiotherapy and chemo will start.  He's doing really well considering all the surgery he had, but he is so tired due to lack of sleep.  How did you manage with sleeping and eating during your recovery ?  When he's feeling up to it I think he is going to join Macmillan Cancer Support and aims to write a blog of his experience.  Take care and thanks for the support.  Janet

Thursday afternoons - always had my Mr Walton appointments then

To be honest I spent much of the time between my operation and radiotherapy still in hospital, was in for 7 or 8 weeks, these little complications can have their advantages, I loved being in hospital 

It was in a middle of a similar heatwave, but I was pretty quick at grabbing a bed by the window and managed to have the hospitals dyson fan next to me for a couple of nights and slept reasonably well once used to the hospital routines

He should have a nutritionist (Nigel) who will help with his diet, I was only really taking food via my PEG so didn't eat a great deal between my op and radio

I did have about 2 weeks at home before my treatment started, but had about 200 fortisips delivered out to me a couple of days after being discharged

If he's got a PEG get him to talk to Nigel and send him Fortisips at home, I was on 6 - 8 a day for a long time.

Thanks for the quick reply.  He does have the Fortisips as well so he will probably be better having them rather than trying different foods.  He has a fan now, so think will help.  He also a nutritionist (not sure of the name) and he has the district nurse 3 times a week to change the dressing on where the trachiotomy was .  Thanks again for replying.  

I had the district nurse out to see me mainly for the dressing on my leg, but also for my trachy.

The 1st time she came out she was there for about 2 hours asking questions, filling in forms, etc. left me with a massive bag of  metals and manuka honey dressing, bandages, etc. and then next day I was back in hospital for 3 weeks and never saw her again.

There is a brilliant lady at radio ward at UHCW who looks after dressings, neck sores etc. (wish I could remember her name)

I was still having to have the dressing on my leg changed twice a week all through my radiotherapy, but as I was going there for my treatment she used to do the dressing for me just before or just after having my radiotherapy session, it saved me having to go my GP to get it done.

I didn't have to make an appointment or anything, I would just go knock on her door if I was early for my session or just after having my session and she would always fit me in.

Am I sad that I miss it all?