Hi Ian

i am 7 weeks post radiotherapy hang

In there it’s a tough road I did 35 radiotherapy sessions 2 chemotherapy.

i have also done a blog www.radioactiveraz.wordpress.com takes u from diagnosis to present day.newlymarried on here is good if u have any questions just shout out. Mine was HPV 16 + cancer of right  tonsil and lymph nodes 

hazel aka RadioactiveRaz 

good luck 

Hi hazel I see this was 2018 I was wondering how you got on and could tell me the treatment you went through , I have just been diagnosed with tonsil cancer and going for my first CT scan tomorrow any info would be gratefully accepted.

I'm in the hospital now as it happens. I've just had a word with the dietician. She's very concerned. She asked me for the pain on a 0-10 scale. 10. Its without doubt the worst pain I've ever felt, and I've had a brain haemorrhage. They're prescribing something that works like morphene but isn't morphene. It's hard to concentrate to be honest. She suspects a possible infection so prescribed antibiotics as well. She's very nice and understanding. All I'm doing is a series of nods and shakes. Thank you again for your reply

Hi Matt no worries get them to check for oral thrush as well that's painful on top of everythjng else. You'll need Flucozonole for that hooe yiu get sorted 

Hazel x

Hi All,

My last radio session was 3 weeks ago tomorrow. It has been a tough 3 weeks but I'm starting to feel a bit better in myself. 
Starting to eat soggy cereal again... weetabix, porridge etc and trying some soups.

I had large open wounds on the neck that have now mostly healed and everything mentioned here and by the Hospital inside the mouth. The mucusitis is mostly gone and swallowing is starting to get easier but my taste buds are still completely shot so apart from cardboard tasting cereal I can't stomach much else. I'm still having Scandi shakes and Fortisip.

I was overweight but have lost just over 3 stone since diagnosis (2 st since treatment started) in March. Back to see the dietitian tomorrow. I'm happy with the weight loss and would love to stay where I am now but do recognise I need to stabilise it now.

Ian, I re-read your posts this morning from the end of weeks 3-6 which were helpful. I seem on a similar track although I ended up fortunately needing very little in the way of pain relief. I was having 1 or 2 co-codomol a day and haven't had any for a few days :)

So although it's been tough, I do feel like I am doing ok and don't want to complain as I've seen many others sufferening.

I wanted to ask those that had their taste buds shot to pieces. I'm sure everyone is different but how long has it taken you to recover? Even water tastes awful at the moment - trying swallow holding my nose just to stay hydrated!

Now fingers crossed for my first CT on 14th July. Will then have a PET in Sep.

Thx, Robert 

So sorry to hear about your pain and struggles Matt. Definitely get a feeding tube if you can - it's never a sign of weakness to support yourself in whatever way you can. My partner really benefited from the tube and needed it for most of the treatment and a couple of months in recovery. 

Fingers crossed the pain can be managed with these new meds. If you ever feel like a drug isn't working for you - please chat with your health team. Everyone is really different and there are loads of alternative medications that the team can prescribe for you to collect at the hospital. Take care and keep in touch x

Hi there Robert. Well done for getting through treatment!

My partner found that food still tasted odd for the first 4 months after treatment. He kept eating even though nothing tasted nice - trying different textures and flavours to keep his jaw and swallowing action. Sometimes he felt so depressed that food wasn't ever going to be enjoyable again! Then from 4 months post treatment, everything started to improve. He's 7 months post treatment now and can enjoy old favourites like really spicy curry, or crusty bread, or greek salad. Everyone has different recovery journeys and expectations - but if you keep eating for functional reasons, eventually you will enjoy it again! 

Best of luck and keep in touch x

I'm sorry you're dealing with an infection Bushy. Hope it clear soon. Glad to hear you're doing ok otherwise. Fingers crossed the taste returns soon! X

Thank you, I massage my neck to help the lymphoedema but the consultant said it may come and go for the rest of my life, 6 months post treatment I've got to be happy how things are progressing 

Yes, you're very right. We're finding happiness in all the small things he can do.

Hi Robert. Takes time I never lost taste but I had have Accentuated tastebuds which is just as bad. Everything fir me was hyper taste eg tiny bit salt tasted like the Mediterranean Sea. Rule of thumb turning point 6 weeks after treatment then around 12-13 weeks for me although one week I could eat something try week later or a chance. It's trial and error I found one step forward 2 steps back some weeks. Don't expect too much ftom c t scsn the pet scan is tge big one remember our cancers  do respond extremely well.  Treat recovery  as a marathon not a sprint and you'll get there. 
Hazel x

Matt

Please speak to your support team as it sounds like you really need to be on morphine.

Its a tough time but they should be able to manage the pain with the appropriate dose.

I was on morphine at same stage as you and I had to go on MST tablets as well as oralmorph for a top up as and when needed.
The MST tablets are taken once in morning and once at night, last 12 hrs and are therefore in your system 24 hours a day. They can also adjust the dose and strenghth of.

hoipefully they will be able to start on your pain relief pretty much immediate and co codomol wont really be enough to control in most cases. Most of us on here were on morphine and thats what its there for and should hopefully give you some comfort and avoid the severe pain you describe.
Ive also posted link to my blog that has timelines and doses during my treatment and recovery and hopefully this will help. Remember you may well need to continue morphine after treatment and during recovery for a bit

radiotherapythroat.home.blog

kind regards
Ian

Matt

Please speak to your support team as it sounds like you really need to be on morphine.

Its a tough time but they should be able to manage the pain with the appropriate dose.

I was on morphine at same stage as you and I had to go on MST tablets as well as oralmorph for a top up as and when needed.
The MST tablets are taken once in morning and once at night, last 12 hrs and are therefore in your system 24 hours a day. They can also adjust the dose and strenghth of.

hoipefully they will be able to start on your pain relief pretty much immediate and co codomol wont really be enough to control in most cases. Most of us on here were on morphine and thats what its there for and should hopefully give you some comfort and avoid the severe pain you describe.
Ive also posted link to my blog that has timelines and doses during my treatment and recovery and hopefully this will help. Remember you may well need to continue morphine after treatment and during recovery for a bit

radiotherapythroat.home.blog

kind regards
Ian