Recovery after neck dissection

You might find you need to massage the fluid down as I was told the scar stops it from draining, just use the back of your index fingers one on each side and start at the top and gently work it down. Just do it whenever you think about it. 

I am surprised you weren't told about doing this.

Thank you for the reply. I will try that.  It is getting me down now, especially as I will be starting radiotherapy soon and I have read that this can make things worse.  I wasn't told and I've been a bit afraid to touch the area too much up to now!

Cheryl 

My neck went down through my radio so I had to hold my chin to the top of the mask, I would say put plenty of cream on the neck and where you will have radio as this will help to stop it blistering, you should be told this and will be given some cream and if it dose blister they will give you cream for this as well so don't worry to much. you might need to keep up the massaging for quite some time , I occasionally still find my chin fills up and I just push it down.

Hello Cheryl yes like Ron said it sounds like lymphoedema which is because now you've had a load of lymph nodes removed your lymphatic system in your neck can no longer do its job properly, part of which is draining excess fluid from tissues. There's a definite technique to massaging it away though so would be worthwhile asking your team if they can send you to see a nurse who specialises in it (as I was). There are alternatives as well like wearing a collar which, from memory (I never had one), contains beads of some sort that do the massaging for you.

Good advice from the previous posters. I massaged a lot before starting radio. Savers chemist £1 vitanin E cream worked a treat. At the back of the head & neck down toward shoulder, above and below the scar, sort of sweeping the fluid away. Not too hard a pressure. 

After the 6 weeks radiotherapy I don't seem to have any so far returning. A host of other problems but lymphoedema isn't one. 

Really try and cream up as often as possible during radiotherapy. I have avoided my skin breaking down by doing it VERY frequently using Epimax cream (prescribed) it is good stuff. Get a small tube to travel with and use it all the time. I'm still applying it 12 days after radiotherapy ending as my skin is now peeling from the burn. 

Also try and keep everything moving, jaw, neck, shoulders, be constantly turning your head side to side, stretching the muscles in the neck. ASK for physiotherapy advice on what to do. Radiotherapy is hard on your mobility, try and fight to keep it. You'll benefit after it stops. 

I've had a great multi disciplinary team looking after me, so was told a lot of things to do, you should have the same. 

Also get as much good food into you NOW. . Have everything that you enjoy as much as you can because it will get difficult to eat.

Are you getting radiotherapy on one side only? What about eating, has a feeding tube been discussed? 

Just finished my 6 weeks radio. No chemo. 

Here to help. 

Thank you for your helpful replies.  I have had an operation to remove the right side of my jaw and roof of my mouth and have an obturator in place at the moment, so eating is pureed food and fortisips, but I'm doing my best with trying to get enough nutrition. 

I spoke with the head and neck nurse and she has told me not to massage my neck too much as it is all healing and she said the surgeon doesn't like it disturbed too much? 

I have been given exercises for my neck and to try to prevent trismus (my mouth has closed up a bit already due to the operation) and I have been given exercises for my shoulder by the physiotherapist.  I have an appointment tomorrow to see the oncologist re radiotherapy and have an appointment to see the physiotherapist on Friday. 

I was at first offered to have a peg or a nasogastric tube and asked for a peg but they then called me to say that they couldn't find a slot for me to have the peg fitted before starting radiotherapy (I have recently finished chemotherapy and surgery for breast cancer and they are having to fit in radiotherapy for the breast and head and neck. They may overlap the two). 

Hopefully I will find out the exact areas I am having the radiotherapy when I see the oncologist tomorrow.

Thank you again for helpful advice

Cheryl

That must be very hard to deal with. Sounds like you are getting good advice, try and follow it as best you can. Keep moving and stretching as best you can without hurting yourself. 

I did my tongue and jaw exercises in the car on the way to radiotherapy. Did get the odd funny look.

Best of luck with everything. 

Hi Cheryl , thanks for giving us a little update of how things are going as i know yours is a bit of a complicated story with your breast cancer and head and neck, good luck for tomorrow i look forward to your next update. Best wishes.

                                                                          Chris x 

Hi Cheryl, have you been massaging in bio oil? It really helps. The swelling is mainly tightness from the scar tissue. You need to get it mobile and massage the skin to get it floating over the underlying tissue. I’d you have pets you’ll know what that is like. Once you do that everything will start to move again. The numbness takes several months as the nerves regrow .

good luck!