Lymphedema

Hi Traceypr1

So sorry to hear that your husband is having such a hard time at the moment. Yes there is light at the end of the tunnel although it may not seem like it at the moment.

I have had 2 lots of radiotherapy for jaw cancer one in 2013 and one lot in 2019. Also had some trouble with my jaw swelling up with an infection making it hard to eat. It was described as temporary lymphoedema and I was given antibiotics which helped a lot although it was quite painful until the swelling went down. I relied on drinking Fortisip during that time as well as whatever pureed food I could cope with.

It does take some time to get over the radiotherapy and I am now 4 months post my last lot and just beginning to make headway with eating.

Does your doctor think that maybe antibiotics might help? What else can the therapists that ring your husband suggest?

This whole coronavirus thing makes it very difficult but maybe a face to face session might be permitted because of your husband's difficult circumstances as it is so important to keep up the calories and not lose weight.

Just some suggestions. None of them may be helpful but just wondering.

Hope something can be sorted out for you both.

Good luck

Lyn

Hi Tracey

I am 16 months post radiotherapy for base of tongue cancer too and I’m back to a fair normal so yes there is light at the end of the tunnel. 
it’s difficult having to cope without the support you get to rely on whilst under treatment. 
Your husband shouldn’t be having as much difficulty as he is at this stage so please do get in touch with his team and get an appointment set up. It is  possible to have face to face meetings now and it sounds as if he needs one. 
There are exercises and massage techniques to cope with lymphodema and you can find some of these in the internet. 

Hazel RadioactiveRaz I know has some links in her blog. So look her bio up. 

I hope your husband gets some help soon. It is a terrible strain in you both. 
Let us know how you get on. 

Hi Tracey.

I absolutely agree with Beesuit & Sophie66 - your husband needs to be seen by a member of his team so that appropriate advice & help can be given. I’m so sorry that he is struggling, but 10 weeks is not an easy time and it sounds like he has severe Lymphoedema causing real issues. But it might be something else, or several things contributing to his difficulties, all of which could be helped, eased, sorted with correct advice. So please contact your team today - do you have an email? That way, they will see it first thing tomorrow. Or you may be able to contact the hospital ward where he had his surgery by phone and they will have an on-call person who can advise for today and make sure you are followed up tomorrow.

It is absolutely possible to be seen face to face now - new patients diagnosed with cancer have been seen throughout the Coronavirus pandemic, but for some reason the default position has been to only phone post-treatment patients, unless a problem or concern is raised.... This is starting to change now and it should be easy for your husband to be seen - but the team need to know how difficult he is finding eating etc.

I wish you both luck and hope his recovery speeds up with support from your Head & Neck team

Hilary

Thank you all.  His team are aware and his speech therapist has set up a video chat tomorrow.

He has no bottom teeth (removed) and cannot move food from the front of his mouth to the back with his tongue so has been advised not to try anything solid in case he chokes.  But nobody seems to be able to offer advice on when he will learn to do this again or whether he will get replacement teeth.  He just gets told its "early days".  He's very despondent.

Has anybody had to learn to chew/eat again please?

Tracey x

Chris is your man 

He will  be along soon 

I'll 'Tag' chris2012 for you

G n' J

Hi Tracey

I meant to mention earlier that you can get some really good advice from the 'Ask an Expert' panel on this Macmillan site.

You find the link at the top of this page. I emailed the nurse about an issue I was having and she gave me some very good advice.

There are also other experts that might be able to give you and your husband some guidance.

Good luck

Lyn

Thank you!

Hi Tracey this is Hazel aka radioactiveraz I am 31 month post radiotherapy for tonsil cancer with several affected lymph nodes. Have you been given any masssge technique s for the lymphadenitis? I never got it but know if several who have used videos on you tube have a look. Yes we all say keep off google but there are s few good videos using a gentle stroke. Do you have s speech and dieticians nurses ? Think you need to be contacting them  all the medical people on the press conference are  saying the n h s is open for business so contact the unit where hubby was treated. 

There is light st the end of the tunnel just a few bends in the way  today I cycled 24 km not bad fir a 63 year old wimp  

Hope this helps Hazel xc

Good evening Tracey, I'm sorry I cannot help with the lymphedema as I did not suffer from that but I do believe there are exercises you can do plus some hospitals have nurses who specialise in this. My teeth were removed due to the removal of most of my lower jaw bone so the teeth went with it . Once i had recovered and my new jaw bone had grafted on ok they started to talk about some form of teeth, due to my lower jaw being rebuilt the decided on putting 4 implants in and making dentures that clipped onto the implants. If your husbands lower gum is ok they should be able to make conventional dentures that just sit on the gum (i think that's how they fit).

      He might have to wait until the swelling goes down and also do tongue exercises, which I had to do to build up the muscles and then I'm sure they will then consider the "teeth ". The speech and language therapist will be in charge of the exercises etc for the tongue.

     My consultant's policy was that if they had to remove teeth then they would replace them free of charge with dentures or implants, he kept his word for me and they did the job. It did not take long to sort out but as i said your husband must be fully recovered before they offer this service. Once they have been fitted and his tongue is working well enough and moving the food around the mouth then he should be ok to chew and eat again, although it will have to be gradual starting with soft food and working up to the more difficult foods. I wish you and your lovely husband all the best with his full recover, take care .

                                                                                      Chris xx