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Hi, I am hoping someone might be able to enlighten me please. I am due to begin radiotherapy and chemotherapy on 24th June. On Monday I am having a fitting for my mask, on Tuesday a PET scan is scheduled and I have been advised to have a feeding tube fitted via my tummy. It’s all quite daunting but I can’t imagine this would have been suggested unless my wonderful NHS team felt it might become necessary. I’ve been warned about developing a very sore mouth and I know from my brother in law that it can become very difficult to eat. Does anyone have any experience of this? Could it really be impossible to even suck a straw? I have to admit to a rising feeling of panic and “am I going to cope with the pain?”. Any feedback would be so gratefully received. Thank you
Hi Debbi. it’s good that you have everything in place so you can crack on with treatment.
Most of us do get very sore. Radiation interferes with the way the skin repairs itself and you get what look like burns. This is called mucositis when it occurs in your mouth and throat. Not everybody suffers badly and there are people here who sailed through taking only paracetamol. But. Most of us need morphine. Try not to be frightened of it. The soreness creeps up on you from about the end of week two. You will be given high calorie liquid food which you are encouraged to swallow but honestly even that is impossible for some people. I have a blog of my experience and my mate Hazel RadioactiveRaz has a much more detailed one of her experience. Check them both out. We both had nasogastric tubes when our throats got bad but if you’re being offered a PEG grab it. In these Covid times corners are being cut and I know of two people who have had to really struggle without tube feeding. Yes you will get very sore but yes you will get through it. I’m 69 and 16 months post RT and fairly normal
There are lots of people here with brilliant advice in coping. Come back as problems arise. You’ll do it.
Hi, DebbiB, My advice would be to have the feeding tube, which will be a PEG or a RIG they both do the some thing. Many of us on here have had them, and needed to use them. You will be given all that is needed to go with them, and you will be shown how to use it. I used mine from about week 3 of my treatment, for about 10 weeks, I couldn't have done without it. Having it fitted is fine and you will quickly get used to it. Even if you don't need it, you will have in case you do.
If you get worried about anything always ask your team, they will be happy to answer any questions you have, and you can always ask on here too, someone will always help if they can.
Good luck with your treatment, don't panic once you get started with it, the weeks will go by quick and you will be at the end of it before you know it.
First if all welcome to the club that none of us want to find ourselves in but once you have found us on here we are a friendly lot who will help as much as we can. I am Hazel aka RadioactiveRaz I am niw 21 month post radiotherapy for tonsil cancer with several affected lymph nodes and am now back to living my life to the max. I too had 35 radiotherapy sessions and 2 out of a planned 3 chemotherapy sessions .Like Beesuit says we both have blogs detailing our experiences .Two lots of advise if the offer yiu a peg grab it with both hands we known 2 who have really suffered these last few weeks one eventually got the n g tube one is still struggling. No use sugar coating yes it can become so hard that you can’t even swallow water ,saying that I am a renowned wimp I cry if u break a finger nail but hey I did it positive mental attitude it wasn’t going to beat me ,after yiur pet ct scan ask if they aren’t giving you a peg that yiu want it in yiur notes that a n g tube to be fitted later if need be .
2 please keep if Dr google tempting as it may be you will scare yourself to pieces.
3 If yiu can’t take anyone in with you take a piece if paper with questions written down and don’t leave until you have got answers sometimes Drs forget we are mee mortals who don’t live in their medical world.
4 we will help you if need be , few to start with Are you h p v + in diagnosis , do they know tumour
size eg I was T2N2Nm which means tumour between 2-4 cms n2 2 affected lymph nodes this later changes to several it happens don’t fret about it No no metastasis no spread outside of neck area .Where is the primary tumour.
Hiw many radiotherapy sessions and how many chemo and is the chemo cisplatin ,cisplatin although makes you feel rough yiu don’t loose your hair .You will loose some at the back due to radiation but it soon grows back,
last bit for today eat eat and then eat some more I put 11 lb on during this time as more than likely yiu will loose weight in total I lost over 22 lb some loose much more .
if you want to chat privately send me a friend request otherwise keep in touch the waiting is the worst part once treatment starts things do fall into,place.
Where are you being treated ? I was leeds cancer center
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com
i give a honest account of my experiences with tonsil cancer
T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions. Now fast approaching the 2 years since end of treatment. Good luck to anyone starting out will always help if I can
Good evening Debbi, please don't be to alarmed about it all, i know its a lot to take in but try and take things a day at a time or when they arise, the mask is normally straight forward and does not take long, mine felt like having a warm towel over my face so nothing painful. The PET scan is not to bad it just sounds and looks a bit sci-fi, as long as you relax you will be fine as nothing in there can hurt you, promise. The PEG i would say is a must, it does not mean you will not be able to eat or swallow but its there just in case you cant on the latter stages of the radiotherapy. I never see the point in trying to swallow things if it gives discomfort so use the Peg and any painkillers as its the best option. You will get the strongest painkillers that suit your pain threshold so i can be best to slightly over-exaggerate the pain so you get better painkillers rather than struggling on with a niggling pain. I think once you get going on Monday things will begin to click into place, but if you have ANY concerns or worries please re-post on here as we have all had similar experiences with varying outcomes as we all react and recover differently. On the whole, you should be well looked after by your team and the NHS, i could not fault them for the way i was treated. Wishing you all the best for Monday, take care.
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Thank you so much for your message. It is immensely reassuring to hear from you, and others, who have been in a similar situation. Your tip regarding pain thresholds was very useful. As a redhead I do seem to need quite heavy duty pain relief so I am keeping my fingers crossed that I will have enough to make it manageable. I hope you're doing really well and thank you again.
I just wanted to thank you so much for your message. I had no idea how important it would be to hear from other people who can empathise so closely. Knowing that others like yourself have navigated their way through treatment is so reassuring and gives me real encouragement. I hope you're doing really well now and life is good. Many thanks again.
Thank you so much for your message. It had so much information and stuff I didn't know about so I am very grateful that you took the time to write. I am being treated at the Royal Surrey in Guildford and I have to say the team are nothing short of brilliant. They are so kind and efficient and I feel incredibly fortunate to be under their care. It's really something to hand yourself over and trust is everything. I can honestly say I feel they couldn't be doing more for me. Cancer is scary and the unknowns keep me awake at night but the information you have so kindly shared is a huge comfort. Thank you. I hope you are I great shape and feeling really well now.
Not much to add to all the other replies you have had other than to say that I was treated at the Royal Surrey and I have nothing but praise for them. Jon
i am in remission from stage 2 hypopharynx cancer and had radical chemoradiotherapy at Royal Surrey. My experience (age 30) was that the first 3 weeks where not so bad, I could eat and do things as I normally would. In the third week my taste went away slowly. After the second round of chemo I ended up 5 weeks in the ward as I could eat or swallow anymore. But I was able to drink and can only say that sparking water and coke make a huge difference to help with the secretions. It took about 2 months after treatment for eating to slowly come back but with altered taste and lots of liquid needed to help it go down. But I can say since March things have been almost back to normal. In regards to pain I didn’t experience any pain expect for the days after the feeding tube was inserted. There was also a slight pain from the radiation burn but if you use lots of the honey cream they give you it makes a difference. Use lots of the mouthwash they give you regularly to help with the sore mouth. Best of luck with your treatment! Your in good hands with the NHS
Thank you so much for your message. A fellow patient at the Royal Surrey. Aren't they amazing? It is really kind of you to share details of your experience, I had no idea how reassuring I would find it. I'm very sorry you've been through this and at such a young age. I will keep in mind your advice but also want to wish you the very best of luck and good health from here on in.
they are incredible! Stay in touch with the nursing team via email. They are always helpful and answer whenever they can. I found it very helpful to email them once or twice a week.
Feel free to let me know if you need any more information.
Welcome to this group, so happy you have come online, first step achieved, knowing you are not alone :) I felt compelled to reply to your post. I have just finished 12 weeks of chemo and radiotherapy (last RT 5th June). I have a nasal tube fitted as, owing to the Covid19 pandemic, could not have my PEG fitted (stomach tube). My nasal tube is the best thing to have happened to me! If I had the PEG, I have no doubt that I would have found that a saviour too! I can still swallow water and warm drinks and could probably eat soup but don't need to at the moment so just am not rushing myself! To answer your question, I can also drink through a straw, just tried for you :D
No doubt about it that this is daunting but you can absolutely do it and using the support available (limited I know at present), you will get through! Please add me as a friend too if you want to. I don't come on often but will make extra effort having read your post. There is always somebody here x
i am well thank you just to show how life does continue I have just eaten lamb steak ,roast vegetables , finished off with strawberries and yoghurt.I never thought after treatment I would eat proper food ever again. Baby steps is the way to go having confidence in your team is a wonderful start ,I never doubted mine from the first handshake from Dr Sen my oncologist ( ps also never thought I would utter those words) .yes cancer is scary but it’s doable , like I said send a friend request if you want to chat further.
yes until you get full diagnosis unfortunately your mind works all kinds of scenarios and nothing anyone says will alleviate those feelings until you get your treatment plan. Just keep away from dr Google concentrate if positives there's lots of us in here p,that to coin a phrase been there and done it.
keep in touch Hazel xx
Im jumping on this thread as Im probably just a few weeks behind you, due to start chemoradiation over the next few weeks but no dates yet. Im based just down the road and attending Royal Berks, had my PET scan already as I hadn't had a normal CT or X ray just biopsy and MRI. I must admit Im having very similar fears re swallowing etc.
I told some of my friends today and that made it a bit more real, I was dreading this but it turned out that the brother in law of one of them had a similar thing and has just reached his 5 year celebration which gave me a big boost
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