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 may request a feeding tube. It was something I wanted to avoid. More to prove I can do this myself but this is just really uncomfortable. I'm happy when I'm sleeping because the pain isn't noticeable. The oral gel (bonjela basically) doesn't do a thing and makes more of a mess than anything else. I'll give your blog a look at anyway. Thank you

Matt x

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 

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 

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

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

Robert,

we are all different and probably various timelines as to food and weight.
Part of my blog goes into a detailed section from advice I had from my dietician.
can be confusing as I was told to up calories at one stage when losing weight by eating creamed puddings,full fast yoghurt etc to get calories ie fuel into body to help recovery.
I was then told to cut back on calories and eat more healily.

I was given really good advice on good and bad calories as they put it and when and when not to take.

I posted on this thread some time ago somewhere but prob quciker heading to my blog if you were interested.
I struggled with food for some time, was on ensures for ages and its slowely just started to come all back bit at a time and then whoo and hoooo I havnt looked back since and can eat lierally anything I want, including spicy curries. There is nothing I can think of that I cant eat now that I didnt used to and totally back to normal choice of eating.
I liked a quote that I was given and told that there is no elevator option for recovery and we all have to take the stairs. - but we do get there in the end.
I promise you will as well and just a time adjustment until you start enjoying food again rather than have food as a medicine ( which it is for a time )

radiotherapythroat.home.blog

kind regards
Ian

I couldn't have put this any better,although I'm 1 month behind your partner things have improved gradually, I can now eat crisps although I have my water next to me, last night I had my first curry, tongue/mouth tingled and I only eat half of it but another step in the right direction, for the guys who have now finished treatment you will get there,follow the advice of people on here I did and still do, but you have to be patient 

Hi All,

I had a CT on Thurs and was told Friday, subject to the PET scan in September, that the tumour has been eradicated and the lymph nodes are back to normal

I'm 6 weeks post treatment and starting to eat better. I'm mostly off the shakes and managing soft easy to chew/swallow foods. Having to slow myself down a bit as I'll try to eat something that will damage my mouth/throat - I'm not one for patience!

Still short on saliva but taste buds are definitely coming back. I feel a bit guilty that I seem to be ahead of where others have been. Not going to go back to work until September so will continue to work on my recovery over the summer.

Ian, thanks for the response to the msg. I continue to go back and read where you and others where at this stage knowing where you are now :) Very helpful.

Hope everyone is coping with the heat. Enjoy the summer!
 

Regards,

Robert 

Hi there Ro8ert. 

I've been looking for someone to ask regards eating after radio so your post is a blessing for me. I'm 3 weeks finished of 33 doses of radio. Currently I'm on the shakes but I'm really keen to get going forward. Because of the burns and ulceration to my mouth, I'm reluctant to try a lot. I tried tomato soup but u wasn't aware of the acidity which made the stinging of my tongue flare up. Tinned tomatoes likewise. I managed a custard slice last night which despite being small, is a massive win for me. 

Youve said 6 weeks in your post. I appreciate that's not a uniform recovery but I'm keen. Can I ask how you weaned your way on to foods again? Porridge maybe? My saliva is starting to come back gradually which gives me hope. 

I've sent you a friend request on here so I could message you privately. Either accept or not it's OK. Just looking for someone who can offer me a personal diary rather than nurses telling me i will get there. 

Furthermore, because of my radio, my jaw has lost some opening. Has this happened to you also? How did you deal with this? 

Thanks. Matt.

Hi Matt,

Ive posted a link to my blog which may help with timelines.

Food can be a challenge in recovery and I had really good advice from my support team and dietician on what we classed as "good" and "bad" calories and when to take them.
Main thing is getting fuel into your body and even starting with softer foods like mash,scrambled egg, yougurts rice puddigs etc and gradually move on. Many of us took a bit of time to fully get back on the road to what we would class as proper eating and its a gradual process i'm afraid in most cases.
Hope the blog helps as a section on dietry/eating foods etc and I would also advide speaking to your dietician who are all part of the support on the road to recovery

Hope helps but feel free to ask away if I can help with anything at at, I am more than happy to do so.

radiotherapythroat.home.blog

kind regards

Ian

Hi Matt,

Well done for getting this far. The 2 weeks either side of the end of my treatment were my worst so hopefully you are over the worst. Ian just beat me to it! I was going to suggest you read his blog.

From reading historical posts on this thread, it is fair to say that everyone is different. I feel lucky as, as well as reading stories of others, the consultant and dietitian have told me that my progress has been ahead of the curve. 
I am 10 weeks post treatment and have been in Czech for a month (Czech wife). We have done a few 50km bike rides and a lot of walks and I'm feeling much better. I have to drink constantly and investing in a hydration backpack is the best thing I have done!

I'm eating sensibly. I can eat most things but foods with a lot of sauce are ideal. My saliva is coming back but still a way to go and my taste buds are still off.

Will send you a msg with some more detail.

Robert

Hi Matt well done on completing treatment it's still early days for you we are all different my blog might help you. 
www.Radioactiveraz.wordpress.com

I'm almost 4years post radiotherapy for tonsil cancer with several affected lymph nodes 

Hazel