Hello...my first post.....High grade NHL

Has anyone had 3 weeks of radiotherapy to the base of their tongue or in that area? Just wondering what your symptoms were towards the end of treatment. Thanks in advance x

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Hi @Smurf08, just in case it’s helpful at all, there’s some general information around side effects of radiotherapy on this page of Macmillan’s website - here and also on Lymphoma Action’s website - here

Hope you and your mum are doing OK.

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Hi, I had it to my parotid gland just I’m front of my ear. Mouth blisters in the third week and A very dry mouth but all rectified in a couple of months. If you have any other questions feel free to ask X

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Hi, I wonder if you could add some tips that helped you during this time which @Smurf08 could pass on to her mum…perhaps things that you could drink/eat to ease the pain and discomfort. xx

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Yes, off course. The mouth ulcers were very painful. I switched between a number of different mouth washes in discussion with my team. I did have some liquid morphine when they were really bad. The mouth wash I initially used was Gelclair but I moved onto Caphosol which worked better. I found swallowing quite hard for a few days so lots of liquids and cold things. It’s was a really good excuse for me to drink lots of strawberry milkshakes as I really didn’t like the food substitute drinks from the doctor! Although these helped I think time was the best healer and the pain eased as the days went on. It was a case of trial and error. My mouth was particularly dry at night. Salivex pastels really helped. You may or may have the same experience as me but if you do, just remember (when it’s at its worst) that it does get better. Just give it time xxx Ask anything as and when you need to.

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Thank so much @Nichola75 for sharing your experiences around this. It sounds really difficult but it’s good to hear that there are some things that helped manage it for you. How are you doing now?

Hope you and your mum are doing okay this week @Smurf08

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This was three years ago although sometimes it feels like yesterday - I’m sure you all understand that feeling!

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Yes, @Nichola75, I was diagnosed 16 yrs ago and I can replay that day visually in my mind, with all my feelings and emotions as if it was yesterday. How are you doing now?

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@Erica @Nichola75 I hope you are both doing okay? As you both say, we often do have people reached out to us and describe very similar experiences, how they can recall in great detail the day they were diagnosed. Hope it helps to talk about it?

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It’s a funny time at the moment. Shielding brings it all back a bit as it’s a reminder of your vulnerability isn’t it. I can’t wait until I can get out and about. However, I am lucky enough to have a garden and when the sun is shining it makes such a difference! Im working through the tough days and enjoying special times with my daughters. I hope you are all well X

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Hi @SuBloodcancerUK and @Nichola75 yes, it does help to talk about it because I then realise I am not the only one with such vivid memories, it is a comfort too.

@Erica that’s really good to hear Erica, particularly at a time like this, where many of our members have expressed going through this pandemic has brought up many different feelings and emotions, including how they initially felt at diagnosis. We do really encourage you all to continue use this as a safe space to talk :+1:

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It really is a comfort x

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Just got round to reading all your replies. Thank you for all the helpful tips and advice. My mum has 2 more radiotherapy sessions to go. She has coped amazingly well so far. She is tired and her throat is starting to get sore now. She will get a scan in a few months to see if the lump has shrunk. Fingers crossed. Hope everyone is doing ok in these difficult times xx

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Hi @Smurf08 that’s so encouraging to hear! I hope you are both doing well? And I’m so pleased to hear that the tips and advice on here have helped you. I hope your mum’s scan in a few months goes okay, we will be thinking of you both. I’m so sorry to hear about her tiredness and sore throat, does anything help with this?

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Hiya…she got a mouthwash and spray from the hospital to help with her throat. She now has oral thrush and is struggling to eat and drink coz of the pain :frowning: I will keep an eye on her intake over the next few days. Dont want her ending up dehydrated. Hope your well xx

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@Smurf08, hope your well. I’m sorry to hear your mum has oral thrush and is struggling to eat and drink. Its reassuring to know that she has you to keep an eye on her. Do contact your mum’s treatment team, if things get worse or she its not getting better. Make sure you take care of yourself too. Hope you enjoy the lovely weather.

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Thanks. She got treatment for the thrush and on the whole she is doing better, think she has turned a little corner. Her voice sounds better and she is managing to eat and drink a little better. My doctor has given me some time off work at the moment. Now that things have slowed down I think the whole situation has hit me emotionally, I have been so tired. Will recharge my own batteries for a few weeks before going back to work. Thanks for your support, hope you are well and enjoying the sun too xx

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@Smurf08 it’s so good to hear your mum is doing better! Really hope this continues for her. I’m also really glad to hear that you have a bit of time off. I can only imagine how much all this is for you to process and it’s good you have some space to do that away from work. I hope you manage to relax and recharge a bit :slight_smile:

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I think looking after yourself is so important. I always worried about my husband as well. I don’t think he realised what a toll it had taken on him because he was so worried about looking after me! Well done for taking some time to recharge your batteries and to process it all. It’s so important X

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