side effects

So sorry to hear what you have to put up with. I think most of us make a pretty good recovery and I am nearly as good as new four years after treatment.

Maybe you could try a course of acupuncture for your saliva issues. There is a particular protocol for it. I have a couple of posts in my blog linked at the bottom of this post. It certainly helped me.

I hope somebody else comes up with a more helpful post

Best wishes

HI Loch.  I only had surgery but can relate to some of your side effects. 

1 I think we all get and just have to accept a lie down when needed.

3 and 8 I find that copious fluids helps both with the saliva and swallow.  I also use lots of "lubrication" for swallow.  Butter, gravy etc. Xylimelts did not work for me overnight so I have water available.

6 I've learned to live with and it is mainly some areas of my neck and my chest.  I still have numb areas in my leg from surgery 45 years ago.

11 Physio helped me greatly.  In my case it was a modified radical dissection (amongst other bits) and the accessory nerve was not cut - only disturbed.  I could lift anything close to my body, but not reach out for a glass at arms length.  Time has eventually cured that issue to an extent where it no longer worries me.

Probably with so many years passing I guess you've tried all of these options.

Hi Loch

Unfortunately for some of us there are long term effects after cancer treatment which is a trade off for the life saving treatment we have. Management of these side effects can be difficult but I have found over a period of time they are easier to accept although some days they seem worse than others.

My cancer is different to yours but I do have some of the side effects you have listed. My first cancer op was in 2013 with radiotherapy, then another op in 2019 with more radiotherapy, then again in 2022. I have just had some reconstruction surgery so now have some added side effects so getting used to those.

I am still forever grateful for the years that I have been given to live my life fairly normally and enjoy in spite of the side effects.

With the fatigue, I find a little nap sorts me out but I am retired now so that is not a problem. It comes and goes. Sometimes I am fine and other times I just get tired. I now spread out tasks and do the bigger ones in the morning and the lighter ones in the afternoon. I also just do bite size pieces of a task and get it completed over a few days. There’s no rush.

I lost all of my teeth except some on the left side of my bottom jaw. I had to adjust and change my diet and could only manage puree and use a straw but with a bit of experimentation found a menu that worked quite well for me. Since then with my reconstruction surgery I have now a full set of teeth in my upper jaw and am now having to adjust to that. However still only able to eat puree and it’s all a bit messy but hopefully will improve with practise. I just fill up before I go out as eating out is not an option. It works fine though.

Very dry mouth with times of thick saliva. This has become worse since my reconstruction surgery. Previously I used a dry mouth gel such as Oral 7 or Biotene and put a bit on my tongue and that worked well with sips of water. Now it doesn’t work so well so still working on that. Before my surgery in 2019 I found Xylimelts worked extremely well at night. With the thick saliva I wash my mouth with a foam swab dipped in Curasept or Chlorhexidine mouthwash.

In relation to the numbness. I have different areas on my face and neck that have numbness but have found over time that it hardly bothers me as I have got used to it although it was really annoying for a while. Every op I have I get another area with changed sensation. The latest being to my new top lip but I am glad to now have a top lip so am not complaining.

Slight speech problem. With my new upper teeth there are some sounds that I find hard to make. Maybe it will change over time. I have become adept at saying a different word with a different sound in it if someone is struggling to understand me. This seems to work. Mostly people understand but if they don’t I slow down my speech and enunciate more clearly and this sometimes helps too.

Sorry this post has become rather long but don’t know how to consolidate it.

If you have any thoughts in return that I can try that would be great.

Sending you best wishes

Lyn

Hi Dani

Just had a read through your blog.  I have had throat cancer and I've now been told scarring and lymphodema, nomsaliva and no taste.  I need tomget some of it sorted, lymphodema first.  Can you tell me how, what or why - I need to do.  I am seeing a kinesiologist who can help.

Hi. Can you get a referral to a lymphodema clinic. Mine wasn’t really bad and a few weeks of massage got rid of it but if it’s significant it really needs professional treatment, usually just to show you what to do. 
Taste takes time. 
SAli a can be vastly improved by chewing gum. Acupuncture really kick started mine. You need a practitioner that is familiar with Auricular acupuncture.  All I did was emailed everybody I could find near me and ask if they did it or knew somebody who did. 
Hope that helps.