Hi Kat planet welcome to the club none  if us wanted to join. Now you’re here ust message if we can help. It’s not an easy thing but I’m a wimp and I did it. This is  Hazel I’m almost 3 months post treatment for tonsil cancer with several affected lymph nodes.Now living my life to  the max . You’ve probably seen my blog  it’s my take on it. Www.radioactiveraz.wordpress.com.

anything you want to know shout out.

Good luck Hazel

Hi Hazel (Everyone)... thanks for letting me join your chat group. 

My name is Angela and Ive decided to join your group to hopefully find some HELP for my ex-husband.  

In November 2020 he started radiotherapy for throat Cancer (nothing in lymph nodes) for 6 weeks. Treatment ended 31st Dec. 

He has suffered all the classic recognised symptoms since his treatment ended, no taste, no saliva, burns, sores, ulcers, swelling, and thrush.  He has had months of medication (antibiotics and antifungal) for the thrush in different prescribed formats, but nothing has helped.  He is currently suffering massively with after pain, finding it very hard to eat and talk and regularly takes liquid morphine which only gives temporary relief. 

He was hopitalized 3weeks after his treatment ended as he was suffering from the effects of malnutrition and was given a feeding tube for about 2months which also tied him over during a 4week period in Feb this year, when he caught Covid (from the hospital ironically).

After recovery from that, the tube was removed and he has tried since then to eat normal soft foods, along with the nutrition drinks but finds food almost impossible to deal with... not only because of the pain, but the lack of taste or the fact that foods taste disgusting.

My main reason though for reaching out, is for advice on stabbing pains.  He understands that there will be of course, general recovery pain... but he gets these bouts of excruciating stabbing pains in the throat (every half hour or so) that completely take his breath away... and nobody (Hospital/ Cancer Care Nurses/ or Dr's) seem to be able to advise either why he's getting these stabbing pains or what might be the cause.  He has been for check-ups and has had the camera down, with reports of 'all clear'... which of course is great, but these acute pains are a massive worry to him.

Does anyone have any similar experiences that they could offer 'light at the end of the tunnel' for him please? 

Hi sweet pea 

Sorry you've found yourself in here even if on behalf of ex hubby. As for stabbing pains sorry I can't help there I never experienced any pains. As fir oral thrush has he been given flucozonole I found that was onky thing that got rid of mine v

re foid best advise tell him to forget about enjoyment for at least 6 months treat food as fuel snd eat to live not live to eat was my mantra. The treatment we endured was brutal an d the recovery  can be long I am almost 3 years post treatment and still on occasions have bouts of tiredness. He will possibly be having fatigue as well best advise listen to your body don't fight it xx

hope this helps 

Hi,sorry to hear about your exs troubles but there's no way to sugar coat it,its a long hard awful road back to some kind of normal.I'm almost 3 years post  radiotherapy and life is pretty much normal now except the debilitating neck and jaw cramps,dry mouth,next to no taste,tiredness difficulty chewing and swallowing certain types of good,altered taste like most things having a salty taste(even ice cream),avoiding anything with lots of salt as it burns,avoiding anything that is more than just slightly spiced,and the constant worry that you can feel another lump.

Good point is its great to be alive so all he can do is focus on the future and hope his recovery is better than some poor buggers.Boots do a cheap mouth spray that will help with dryness and its cheap although I found it quite stingy for a few months but the Glandosane spray(prescription) is a godsend .I use both.Toothpaste and mouthwash are stingy for us but you can get the Bioextra mild mouthwash and toothpaste on prescription and I use these today even.

8f you can get the Fresenius 2cal drinks from the nhs,they're a meal in a bottle when you can't swallow solids.Took me 7 months to start with solid food and even then it was only soft stuff.I can't tell you how crap life is going to be for him in all honesty as it will be he'll at times,a couple of times I reached the end of that road but pulled back in time.You just have to focus,best of luck,John.

Hi John,

Thanks so much for your reply.  I am really very sorry to hear that you are still suffering symptoms!  Its terribly hard to hear that quite possibly, all the pain and suffering is not going to go away any time soon.   

I felt (and hoped) I might be able to find more helpful advice from this site from those who have actually experienced and gone through all the terrible treatment for this dreadful cancer.  All the consultants and nurses in the world can only tell you so much, but unless they have actually experienced and been through what you have, they basically have no idea and of course, have to cover themselves from offering a definite 'you'll be fine' prognosis. 

I do tell him to try to look at the positives.... he's here, he's alive, he has family all around that love him and care, his grandchildren need their granddad, but its terribly hard to lift his mood.  The food issue is a major problem.  He's always been a fussy vegetarian and would never try anything new.  Now, this poses an even greater hurdle to get him to consume enough food.  He has lost a lot of weight.  He does have, as I've mentioned, the meal replacement drinks from the hospital. Unfortunately, Fresenius doesn't look as if it is vegetarian. 

As for Glandosane, Im not sure if he has been offered this, but if not I will try to get him some.  I know he has had Oralieve dry mouth relief but he didn't find it helped.  I did also get him Oranurse unflavoured toothpast which seems to be helpful, but its the dryness that creates the worst of his symptoms I think, along with the thrush.

I am very grateful for your reply John,  and can only say, keep strong! keep going! KEEP CANCER FREE!!

Kind regards, Sweetpea  

Hi Raz, and thank you so much for your reply!

Clearly, reading yours and Johns replies, the battle for recovery continues on for a very long time... which is very hard to hear.  I keep trying to lift my ex's spirits by saying each day try to find a tiny spec of positivity, but Im am loathe to tell him about your experiences.

As for the oral thrush, yes, he has had several of courses of Fluconazole in different formats... but unfortunately with no relief so far.  I have found this 'natural' garlic treatment called Allimed 100.  There has been a lot of research done on how the Allicin from garlic has many healing properties and this is the strongest form available on the Uk market.  It has shown to help with any form of thrush, so have got him a months supply to trial.  

At 71 and still trying to work, he finds fatigue a massive problem on top of the other physical symptoms.  I will keep on encouraging the eating thing and keep on doing research on how to help.

Thank you so much once again for your reply... and hope you continue to improve and keep healthy.

Kind regards,  Sweetpea

Hi, just to echo all of the above, and add that " still trying to work " may not be helping, physicallly. One of our group was back to work, but took time off again, as the body needs all energy to recover. Food and nutrition yes, but rest if its needed.

 There must be a lot less nutrition in  a vegetarian diet for  these extreme circumstances like radiothereapy, supplements may be needed. I was fortunate to be given amino acids to avoid the worst of the mucositis and its pain, you would be quite right to ask to see a nutritional specialist, we all wish you well.

Hi Sweatpea 

to give you an idea this week I've cycled 75 km walked 50 km snd have been away with a friends motor home. Today we're at home I've done 5 hours at daughters allotment. So it's not all doom n gloom. But honestly if he is trying to work at 71 and not maintaining foid the fatigue will not go away in it's own. I was told I needdd 85 gram of protein a day to help repair the radiotherapy damage along with 2500 calories by any means .I know a few vegetarian s who have had to revert to fish or meat for a while as health comes first.  Try protein powders in smoothies .eggs are good. As for fatigue a smsll daily walk as silky as it seems will help. There is no quick fix but there's a slippery slope that he can fall into.  His he seeing  dieticians ? I saw one weekly.  
Mantra eat to live rather than live to eat plus drink at least 3 litres of water. 
my blog is www.radioactiveraz.Wordpress.com

it may help 

Hazel. Ask if you need anything 

Hi Graeme. How's things ? We're stuck over in Blighty as you can guess. Ferry's booked for September   Are you doing any gigs ? 
h xx