Week 4 update

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Hi everyone hope you are all doing well. I thought aid share a treatment update. I have head and neck cancer of unknown primary which has spread to a lymph in my neck. I also have an unrelated cancer of the lung which is being treated later. I'm on day  2 week 4 of 7 weeks radiotherapy and 3 cisplatin. Unfortunately I couldn't have the chemo yestas I am neutropenic at the moment . On the whole I think I'm doing ok. 

I'm still eating soft food even though it's painful a d not at all enjoyable. Food is horrible in my mouth and everything tastes minging. Even water is a struggle. I know I will have to resort to rig feeding very soon. Issues around food have been the worst thing to deal with so far. Yesterday we clipped my long hair really short. Dramatic I know but it was too upsetting to see it coming out and the bald stripe appearing across the back of my head.

As for the pain, I'm struggling but managing in paracetamol and ibuprofen at the moment. I do have morphine but I'm keeping it on standby until it's absolutely necessary. I know things are going to get much worse but I'm just taking it one day at a time. My biggest concern it the lump in my neck is still there so is the treatment working? My skin is red itchy and sore too. Anyway I hope you are all doing the best you can. Onwards and upwards.Jen x

  • Hi Jen. Well done on getting this far. Neck lumps take well past treatment end to disappear often so don’t worry about that bit. You don’t need to keep morphine back for when the pain gets bad. Pain relief is better taken in advance of pain and we can all take a heck of a lot of morphine. I had long acting morphine twice a day with oramorph on top. Just remember you need laxatives with opiates as they slow the guy down and you get constipated. I’m sure you’d team had given you laxido or movicol. 
    Keep going and hugs 

    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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  • PS. Keep the moisturiser going for your neck. I used aloe vera gel straight after RT and I’m sure that’s what stopped me burning 

    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

    Community Champion badge
  • Hi Jen. As Dani says the lumps can take forever to go so don’t think about it. The treatment is working the pain management is vital so please don’t delay it too long once you start on morphine remember laxido or movicol take it daily it helps. My,y oh node was very close to surface of skin hence my burning but now it doesn’t effect me just slap factor 50 on daily. Again your pegs there for a resin don’t delay using it not eating and drinking will affect you all of a sudden so if waters hard put it in via the peg at least. As for your hair it will grown back mine started at the end of treatment I kept my length to cover the bald crescent at the back. But after treatment I had a decent cut as ut needed ut. Yiu do what you feel better doing. Great to hear from you. I do hooe Bexley wing are treating you well? , don’t worry about the chemo not everyone has all sessions i only had 2 of planned 3. 
    hugs Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/