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.

Hi anchor

Got my specialist meeting on Wednesday when I get my treatment plan and what will be what, I can't say I'm not nervous as I am terrified as he will also have the results from my CT scan too but hey 4 days to go

Hi weasel 

Thanks for your kind words and I hope my treatment is successful like your partner I do worry about my wife at times it is hard for her too but I try and show her I'm OK and not worried as I don't want to add more pressure on her. My next post will be Wednesday after specialist meeting. Thanks to all good to talk. 

Hi Davy

Totally understand and its tough time waiting for results but as you say Wed will soon be here and knowing your treatment plan is the first step forward.
Treatment nowadays is so advanced and technology available now is amazing.

It is tough on partners as well and I have a special shout out for all partners in my blog as they are so important for support before,during and after treatment. 
All the focus is on the patient but my support team was particularily helpful with my partner and it was  at times, easier to relay information when both at appointments.

We are all rooting for you and all here if you need any help,support or advice.
Let us know how you get on Wednesday and this is the start of your recovery when you know what treatment plan is.

kind regards
ian


 

Hi Chrissy

sending my best wishes to you both and it can be really tough during and after treatment so hang in there and hope once procedure carried out, it all becomes a little more comfortable and bearable with swallowing and able to sip and drink water.
 

kind regards

Ian

Thank you Ian x 

Thank you Hazel xxx

Hi Chrissy, hope everything goes well for your hubby and he can get rid of the peg tube, I'm now on antibiotics for a month as I've got infection in mouth, other than lack of saliva and food not tasting nice I'm doing ok back up hospital August, please let us know how your husband gets on please 

I'm currently on dose 11 of 35 for maxillary sinus cancer. I was told the radiotherapy would hammer my mouth and tongue. I underestimated by how much. After only 2 weeks I can barely talk. Im struggling to eat, drink and swallow. I sleep 20 hours a day. My tongue, even in a resting position, stings. Brushing my teeth stings. It's to a point I honestly could cry. They've given me numbing mouthwash which stings. Synthetic saliva spray which stings. Oral gel which stings. Water stings. Juice stings. Cocoedemol stings. I cannot get ahead in any way shape or form.

Does anyone have any advice for pain relief other than the ones I've listed already? 

Thanks. 

Hi Matt 

I got to a stage where lukewarm water 15 seconds in microwave some days 10 seconds took the edge of the water. I couldn't drink two water still can't only bottled water.

But during treatment I had same issues as you. I had 35 sessions also. May week 3 I had a n g tube fitted you may need one or if you've a peg start to use it. Fir st least 5 weeks I rinsed my mouth but all medication food  supplements snd hydration went via the tube. The treatment is brutal it has to be purely where the radiation is targeting. Our mouth area is sensitive my blog may help you   www.Radioactiveraz.Wordpress.com

hazel x

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

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

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.

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

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

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

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