Third week of treatment

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Hi, Just finished third week of radiotherapy with one round Cisplatin first week.Next round on Wednesday.Haven't been able to eat since end of second week but can manage to drink a pint of full fat milk each day and with the fortisips haven't lost any weight so far.Managing a forty minute walk each day with the dogs and a wee tidy up in garden.Then need an hours sleep in armchair.Mouth painful so Difflam probably 5 times aday.No taste and saliva awful.I dream of a roast chicken dinner !! Ploughing on.Just taking co-codamal four times aday although I know things will get worse.Is anyone else at this stage in treatment too ? All the best, Turi

  • Hi Turi. You’re at the same point week 3 that I was my long suffering hubby cooked me 9 eggs on the Sunday in different ways I couldn’t eat any of them. We refer to it as egg Sunday. I knew it was time for my ng tube to be put in the next day. You’re not on your own. You’ve a peg ? It’s time maybe to start using it. 
    hugs H xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Yes I can imagine.How long was it after the radiotherapy that the ulceration in mouth and throat started to ease a little?

    My biggest ulcer along the side of my tongue persisted to well past 12 weeks but it didn’t hurt by then. The others had disappeared by then. RT damage is pretty deep. The ulcers go as deep as the last layer of skin. They are not superficial like ordinary apthous ulcers. 
    Don’t worry about your sister. Get a torch and show her what your mouth looks like if she is incredulous. Anyway it’s not her concern. 
    I had very little external evidence of damage. My neck just looked pink and scaly. I told one person who couldn’t understand what the fuss was about that if they swilled neat bleach round their mouth they would be some way towards feeling what I felt. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi Hazel,

    Yes I'm using the peg now but every now and then give something solid a go.Managing to keep weight stable with four and half fortisips through the tubes and pint of full fat milk that I can still drink.Getting very bad tempered with my sister now and actualy told her to go home today.Rolled myself up in a blanket and slept for an hour and a half ! Don' t think anyone will be speaking to me by the end of this !

    Turi 

  • Hi Dani,

    Yep that's just what it's like.Nobody can imagine what it's like from the no taste or texture to not even being able to tell if you are chewing food or the side of your face.

    Turi

  • Im following you now Turi as Im a few weeks behind you have mask fiiting CT and MaRI on Monday then RIG fitted at some point . So glad your nearly halfway through Im already feeling like swearing at everyone and everything and havent started so your doing AMAZINg!!!

    xx

  • I wasn’t very nice to my hubby in fact I would have left if I could lol. I was down  right rude at times but he just stoically carried on. We did have words a few week intk revivery he too the oncologist s words 2 weeks and you’ll start to feel better as gospel. But has we all kniw it’s much longer than that in many cases. 
    hugh H xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hazel,

    You did cheer me up with your "egg sunday ". Still sniggering.

    Turi

  • Hi Debbielouise,

    Hope all goes well on Monday.Oh the grumping will definitely get worse.I'm a very bad patient.Bad tempered and full of self pity ! This weekend has been the first time the pain has really kicked in so going to see about getting something stronger on Monday.

    Cheers

    Turi

  • Hi we still talk about it even today we had a laugh when  I told John. Poor love ur boiled soft then hard poached scrambled fried made an omelette. I kept saying no no no. 
    Glad I cheered you up we are all in this together. Re pain by end of this week I was on oramorph as well as co codomol 
    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Turi

    You doing very well. It is so hard for people around us to understand what we go through and what the treatment puts our body through. But on here we all do. Just take one day at a time and do not force yourself to eat what is painful for you. Your taste buds will come back and your ulcers will also eventually go. I finished my treatment last September and I couldn't eat until end of December as my mouth ulcers seem to really like my company.... Some days I was really frustrated with myself and even felt as I I was failing but I have learnt to be kinder to myself and more patient. I still have no saliva and some foods such as meat and spicy dishes are still a no go but I still keep trying and I have learnt to adapt some recipes. I was dreading eating as it was taking me for ever...I started to watch my favourite series when eating so I wasn't focusing on the food. I am now enjoying eating with friends even if I can't all the time eat exactly the same as them. 

    You will get there. It is ok as well to feel frustrated and grumpy. People around you will understand...if you are worried they don't....we are all here to listen.Be kind to yourself, make sure you rest and don't forget the painkillers...don't wait for the pain to wear off. 

    Baby steps will take you a long way. 

    All the very best. 

    Fab1