Fed up

Hi. At 12 weeks I was on morphine still. If you have lymphodema in your neck there is likely lots inside as well but it will get better. Are you doing swallow exercises? They will help the swelling. 
For your neck I have a simple video in my blog that might be of use till you get your clinic appointment 

There is also a great tip from Peter. I shall try to find it for you. 

Thank you so much for your reply. I will look on your blog for the video and give that a go, sounds really helpful. 
Carla 

This is a really good thread that has some useful links.

CLICK HERE

Coming up for 3 years since CRT finished.

Many of us thought that eating, drinking and enjoying food was a thing of the past, far from it, it just takes time and perseverance, I had to challenge myself with different foods, starting with small portions then gradually building up. It took about a year before I was fully happy with my taste and appetite.

Hi Carla,

I went through the same treatment for the same diagnosis,I too were thinking the same at the time ,but things do improve. I know it doesn't seem like it now but the swelling does eventually start to go down ,I was lucky enough to be referred to a lymphodema nurse ,who showed me how to massage the neck ,she also gave me a stretchy collar to wear. My lymphodema went away eventually ,but not over night ,you have to work at it and let time heal. Swelling was visible in my throat for nearly 12 months , and I do get the occasional swelling now. Like others on here say ,recovery is a marathon not a sprint. 

12 months on and I still get problems with eating ,but nothing like it was ,and hopefully I'm still improving.

You will get there ,trust in your team ask them any questions  and use this site ,it helps me enormously.

Always available for a pm 

Best wishes Mark 

I also had lymphedema under my chin...My CNS taught me how to massage the area, worked a treat, still massage daily

Thank you so much! I will take a look 

It’s really good to know I’m not alone. Progress just feels very slow. Glad to hear you are doing well 

Hi Mark, 

thank you so much for your reply. I am really hoping I get my referral through soon, in the meantime I will have a look at videos suggested above. 
It is so good to hear others have been through this and come out the other side, it feels far away at the moment. 
I am so pleased you are doing well now. 
Carla 

Hi. Sorry for the late response.  Jane a look at my profile for links to YouTube lymphoedema massage as recommended by my specialist nurse.  They should help in the time you're waiting for your hospital appointment. 

At 3 months I was just about thinking of coming off pain relief but it was another couple of months before I could get clear of everything. 

At your stage I was still using the PEG, but mainly for hydration and meds.  In my case I quite liked fortisips so was able to ween off the PEG by using them for calories rather than actual food.  I still have to be careful with food but 2 years on I have a varied diet and enjoy life. 

You'll get there in the end.  Patience is a trait we need but it's often in short supply as we long to get through recovery. I hope to hear in a few weeks that you've seen improvements.