Hey Beautiful people . So happy to see some of you are back up on your feet and getting there . My husband has 8 fractions of radiotherapy left out of 33 & without having chemo this is a nightmare . Side effects are now becoming awful .... I wouldn’t wish this on anyone . And I’m not the one receiving the treatment ! 

May you all recover fully . Ginny x x

Hi Maria how U doing. Just on way back from Spain 9 weeks fsctor 50 on neck topped up with fake tan in night lol. Plus hat when inbdin am doing great biked 600 lm walked 300 km saliva still an issue but getting there meat has it’s monrnts but fish is good 

keep in touch h ps still no alcohol not that I used to have more than maybe s glass every few months 

h d

Hi

welcome to the survivors club. Yep sometimes things get worse before they get better. I am 8 month now post radiotherapy n saliva is still problematic but getting slightly better every day even gave moments of dribbling. Lol. Xylitol chewing gum in daytime  the proverbial water everyvwhere I go is now an extension of my arms. Plus 1/2 Xiymelt tablet dissolve in nightvstops tongue sticking. But small price to pay. 

Congratulations 

hazel c

Hello all

So I am now 7 days on from radical tonsillectomy or oropharangeal resection. Though I would post an update of the basics but feel free to ask for further detail if it helps you.

My selective neck dissection three weeks ago was pretty okay. I had been offered single modality treatment of either these two staged surgeries (to lessen the chance of a fistula or hole developing neck to throat from thinning the inside and the outside accidentally meeting in the middle like the Channel tunnel) or radiotherapy alone. I knew both would affect eating and drinking and possibly speech but with surgery whilst I would definitely sacrifice one lesser salivary gland beneath my chin as intertwined with nodes there, the major producers at the back of ones mouth would be spared and I was assured the upshot would be relatively normal. Taste buds would also survive and general recovery time would be shorter.

During the neck dissection (a ’Chelsea smile’ is less of a scar!) my lower lip, neck muscle, shoulder and tongue nerves were stretched and traumatised but identified and isolated out of the way of any cutting and protected so whilst I have some paralysis it is temporary. It affects my ability to lift and place my shoulder so gear changing in the car and my mouth symmetry. My neck was stiff afterwards and it was a relief to remove the drain but this type of discomfort is easier to reconcile than the internal throat stuff for me. My head needed supporting or balancing in the upright position a bit like a new borns’ initially.

The throat operation was very painful afterwards. Having a raw throat with a knitting needle of an NG feeding tube knocking about against it was not pleasant and felt like a fish bone stuck there. I was given oxycodone - one of the opiate drugs that has the lowest tendency towards nausea. That was fantastic but it had to be requested and swallowing it was tricky (the ng tube cannot come out until one is eating and drinking).... when I got home my GP gave me a slow release version as a patch to wear. Much better idea. This also got around the problem of liquids pouring out through my nose due to partial loss of soft pallet. I’m to tip my head back as I drink but my throat feels very tight at the front and this is to be worked on to be able to achieve the desired angle. My voice is normal although tongue a bit swollen and bruised and jaw cramping limits speaking / mouth opening whilst temporary shock reaction of saliva makes mouth dry and gooey. My new enlarged airway doublydries my throat out if I breathe through my mouth too. It’s therefore up 2-3 times a night for mouthwashes and painkillers for me and a sloppy puréed diet until the raw back wall of the throat recovers and the swallow strengthens. The section of the constrictor muscle or tonsil bed removed should be partially compensated for as the rest of the muscle remembers how to work so good pain control to enable effective swallowing is doubly important.

i read somewhere that as the arch of the soft pallet heals, scars and contracts it pulls the good side further across so the nose/mouth barrier should partially reinstate. Hopefully some appreciable difference by a month post op.

My neck nodes were all negative which was great news so now awaiting the margin status of the clean up around the tonsil.

Then we will know what’s next......

Good luck to everyone else waiting on news or looking for an insight into this type of surgery. Just the small matter of A-Levels to contend with now.....

Jane x

Hi Ginny

I hope that your husband's treatment goes as well as expected. It is a hard road.. maybe, as I was told by the medics, one of the most arduous treatment protocols. Bloomin' awful!! 

Personally I am so.. so relieved to be on the other side now. I did anticipate how nasty it was going to be but nothing really prepares one for the actual experience. Everyone involved in the diagnosis and treatment have been great. I hope that your husband can take comfort from the post-treatment accounts including my own. It might not feel like it during treatment but there is a very bright light of optimism at the end of the tunnel and the prognosis is usually very good nowadays.  I anticipate in a year or so to be able to look back on my own journey as a distant memory and think to myself  'now what the hell was all that about'.  

My best regards to you both. 

Paul.

Hi Jane.

I wish you a speedy recovery from your procedures.
I had a combined modified (open) neck dissection and laser tonsillectomies (plus radiotherapy and a few sessions of chemo).
Now and after 6 months my skin crease neck incision scar is barely visible. For a few months there was a thick layer of tissue under the incision site. That gradually disappeared. Thankfully no other issues except maybe desensitization of the skin around my neck on that one side and I gather is not dissimilar to the loss of sensation that can happen from facelift procedures. I was warned about potential temporary nerve paralysis but escaped any of that. I hope these kind of issues resolve quickly for you. I did get quite a lot of discomfort from around the drain site. I was glad to have that removed fairly quickly. However it felt like a deeper stitch from near that that continued to give me pain for a while. That resolved ok.

Good to read that you have working strategies to deal with swallowing difficulties. I totally relied on a PEG tube for about two weeks. Otherwise and despite being a very bad patient physio -wise, I retained my swallowing fine once the worst of the radiotherapy was out of the way.
 Incidentally I note that my uvula now sits a little off centre. I think the surgery on the left tonsil bed on my primary site has created some scarring or healing which has moved everything around a bit.  It doesnt appear to be of any consequence although intially I suffering from a lowered palate and which was very weird to experience.

Great news on the histopathology!

Best of luck with the A-levels.   Enjoy life.

Paul x.

H

Hi  did u want to message me xx

Oops, not sure what happened there.

Was after a bit of advice please, I remember reading something you’d posted about neck coverings. My husband has decided he wants a cravat to cover his neck, question is silk, cotton, bamboo? I’m guessing you tried lots of different materials to find something tolerable?

Also any advice on travel insurance please? We are aiming for a week away the week before treatment starts. Should I just inform our regular insurers or will we need a specialist policy? Don’t expect that anything Cancer related will be covered. Xx