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.

Hey Matt, 

Sorry to hear your are struggling, it sounds like you need to be on more pain relief (oramorph + slow release morphine) speak to your macmillan nurses) the blogs on here are really helpful. Best of luck

Hi Matt, I really feel for you, I nearly refused a feeding tube so glad I didn't, I had it in for 4 months I put virtually everything through it when I was at my worst it helped so much bypassing the mouth, hope they can find something for you to improve things, I put water with my mouth wash so it wasn't so strong on my mouth/tongue.

How easily would they give morphine though? Do I request that? 

Oh Bushy

I hope the infection clears soon 

will post after hubbys procedure 

x 

My hubby was prescribed morphine as a just incase he needs it!  Never needed to tho.

Hope you can get some relief soon 

Chrissy

x 

Hi Matt don't be silly there's no prizes for avoiding a feeding tube. If yiu need it yiu need it imagine the next few months no food very little nutrition or hydration you will end up hospitalised Nevee mind recovery that phase I can be just as hard as treatment  as once yiuve had yiur last radiotherapy it continues to work for many weeks read some of the threat in here .Please be sensible .Aw for mouth issues ask for gelclair it may help . But ti be honest radiation virus are just that burns they burn the cancer away and although the planningbtrys to avoid damaging new tissue it can't be helped healthy tissue gets radiated. 
morphine is readily issue single form of oramorph tomstart with inwas in 40 mil a day at my worst many have fentynal patch's as well. We don't get hooked as long as a phased withdrawal is done when time to finish. 

Hazel x

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

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