Radiotherapy and more

I was told to stroke gently towards intact lymph nodes. Are your lymph nodes behind your ears still there? There’s a video on my blog 

Aww thanks Dani. I'm not sure what if any I got left. I'll check with my nurse x

Good evening Kate, the part of my surgery that took the longest to heal was on my forearm where they took a disc of skin and a vein ( radial forearm free flap) In the end they found a dressing that contained silver which did the trick. My tracheostomy site did close up in the end after the third swallow test. I had quite a few suspect lymph nodes removed also others so that it gave them a clear margin of getting rid of the cancer. I never suffered from Lymphedema but some people do but with the help of massage and advice from a Lymphedema nurse they made a full recovery,. in most cases it finds another drainage channel. I was very puffy after my operation and the toilets/bathroom had the option of no mirror so that people did not get discouraged from the swelling, i went for the no mirror option so it was not playing on my mind. Im sure the swelling will start to reduce once the lymph system sorts itself out.Best wishes.

                                                                         Chris x 

Thanks Chris really helpful. Before operation plan was to remove as many nodes as they could. This is because  I was misdiagnosed initially with a cyst which was one operation! Histology showed cancer and it was over a year of visits to ENT before operation to remove cancer. so I'm going to check if any nodes left in neck. The radiotherapy is really aggravating the lymphedema and I'm not week in...... typical

Oh I remember toilets...all had mirrors...oh boy was that shocking!! The swelling has gone down loads. But these squirrel cheeks which get caught in my gums are so uncomfortable. I'm doing loads of light massaging but getting little relief. 

I've been referred to lymphedema nurse apparently. I'll chase next week if I hear nothing. 

Thanks again for information really helpful  

Hi Kate B.   I have had real problems with lymphodema and biting the inside of one of my cheeks.  I am much improved 15 months post rt but (to me) I am not yet back to ‘normal’.  I have had 2/3 infections in my cheek as well which is annoying.  I use salt water a lot and things are improving. But I still bite it occasionally , especially if my mouth gets dry-it sort of sticks  I also use a Hereford collar most mornings for a while,  which I got from my team. I use a facial roller as well, twice a day.  It has really improved since the start but just not quite there yet.   I didn’t have lymph nodes removed, just rt to both sides of neck.  Best wishes.  Lizzie  

Hi Lizzie

I checked and they pretty much removed all mine!! Yes radiotherapy therapy can damage them too. This is why my lymphedema is worsening with it.

I'm also a couple of stone overweight which apparently does not help. 

Thanks for the information really helpful gives  me some ideas of what to look out this end. It's really weird, my chin and bottom lip have no nerve endings. Despite being numb due to pressure of swelling it feels heavy tingly and uncomfortable . 

I had a goytre neck before op so I think I had alot of baggy skin in the neck to fill!!   

Thanks again

Cath

Hi all

Hope everyone is OK? 

Third week of radiotherapy and I have ulcers on lips and tongue and I think thrush by looks???. Lymphedema has not changed but i gently massage regularly throughout the day. I have to be careful I don't get a collection of toxins around the scaring.

Can you advise the best thing for ulcers....I have a dissolving tab mouthwash. To use 4 to 5 times a day. 

Plus I'm starting to have difficulty swallowing my saliva....though I can still swallow to drink.

Anything  sound familiar  

Big hugs for your time guys x

Unknown said:

Anything  sound familiar

All of it unfortunately 

Is the dissolving tablet Caphosol? I had that. I used only half each time and doubled the frequency. 
Add Difflam and Gelclair then morphine later RT ulcers are not like ordinary ulcers and they won’t start healing till treatments finished. You can mitigate the pain though. 
If you think you have thrush then tell your team.  But it seems a bit early. 
I kept my mouth scrupulously clean and avoided it. 
Last thing before bed I rinsed with corsodyl. Stung a bit for half a minute but did the job. 

I've never had such a clean mouth. But my tongue is white!! ?? I'll check with nurse this morning.  I'll do the mouthwash at night thanks. Yes you've got the right mouthwash. And I rince every hour and half. Ish. Is that enough. 

On paracetamol for pain relief at min. Thanks for info. Really helpful  

Hi Kate. If your saliva is reduced you will have a white tongue. It’s inevitable. If they do say it’s thrush make sure you get Fluconazole, nothing else works. 
Rinsing that often is fine. It became a real bugbear if mine. There’s so much stuff to do with your mouth it gets confusing. I put a list to tick off on my kitchen wall and my husband was on my case if I missed anything.