Still trying to be positive but its bloody hard

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Help I am on day 19 of radiation and I begin my second round of chemo next week.  I have not been sleeping all the way through my treatment and I have had my sleeping pills changed and they still aren't kicking in. I am finding the pain in my lower area from the radiation is keeping me awake, I am doing everything they had told me to do, sitz baths, instillagel, flamazine cream, and am still not getting any relief.  I am feeling really worn out and have no idea how I am going to make it through chemo next week as well.  I feel the whole way through so far all I have done is reported so many side effects (they are having to reduce my chemo back to 75% due to my side effects in the first week, I was so sick).  I really do not know what to do from here, I am feeling so low and depressed, this chemoradiation is really hard and I am terrified of the reactions yet to come with another 10 days of radiation. 

  • Thanks Irene, I really appreciate your words of support.  I so needed them yesterday and I did stand up for myself and had prescribed slow release morphine tablets and other pain relief to take six hourly if needed (these are also morphine based)  I am looking forward to a break over the weekend and hopefully some more sleep.  I have since found out that my blood count is low and am unsure if chemo will start on Monday, I just had another blood test this morning to see if the blood count has increased.  I so look forward to this all being a distant memory too but your words of support encourage me that I can get through this. Thank you again.

  • Hi and I wish you all the best for your treatment going forward.  One thing I have learnt from this wonderful site of support is to speak up for myself.  I had previously mentioned a lot of my side effects and was told no that its too early for that to happen, or they were under estimating my pain level.  I really stood up for myself yesterday and have been prescribed morphine based pain relief.  I have also found out from the chemo side of things that my blood count is low due to the first week of chemo and all my side effects and they are unsure if chemo can start next week unless my blood count comes up.  This just reinforces to myself that my body was really struggling and I needed help.  Thanks for your suggestion of hypnosis, any ideas are worthwhile trying to aid the sleeping.  I am hopeful that once the pain is under control sleep will return.  I actually got about 3 hours last night in one go which is a relief in itself.  I will be thinking of you on Monday and sending good vibes your way that it is all good for you.

  • Hi, I like your suggestion of mens baggy boxer shorts. I will be shopping for some this weekend.  It is reassuring to hear that your burns healed quickly and your hair shed a bit more than normal, certainly has given me hope that I too can do the same.  thanks for your support.

  • Thank you for your support, and I did take it on and stood up for myself.  I now have prescribed morphine based slow release and shorter term pain relief.  It did make me feel extra sleepy and I got some sleep last night.  Last night was my first night taking it and I am looking forward to the weekend having a break from radiation and getting more sleep.  I am so grateful for all offers of support and suggestions.

  • Your welcome. I see from your other posts that you've got some pain relief now so hopefully you will get more sleep and your bloods will improve. Xx

  • I am so glad you managed to get some sleep! I have been worried about you! I really hope things start to improve and the pain is a little more manageable. Keep strong, you got this!x

  • Thats good - well done x unless you tell people they just dont know what to  do - I often walked into treatment feeling in a mess then after treatment and asking for help things improved.  I believe making decisions on pain relief for each human must be hard as not one of us react the same, keep the helpline number near you and the 24 hour number somewhere easy to find incase you need a chat or help (either is fine to call for).   Good luck and keep up up to date x  Well done Angie x 

  • Please don't worry if you have to really have to continue without the chemo.  It has happened to quite a few people on here and the end results have been the same, you have had 2/3 of the chemo which has set you up.  I am so relieved that you have finally been prescribed morphine and don't be afraid to call out for more if you need it.  I am stifling my annoyance at your treating team for presuming you shouldn't need it yet - as if you would exaggerate about this in the midst of treatment.

    Because I had metastasis to my lungs I went in for lung ablations a week apart after treatment finished.  My husband printed out my chart of exactly when I should be given dosages and not only that he rang up to check with the nurse on duty that it had happened when it should.  She was laughing when she came into the room and said you have a good husband, he is giving me such a hard time!  I know others don't always have the support which is why I say to make your pain known in no uncertain terms.

    I am so looking forward to you getting through this.  And you will.

    Irene xx

  • Hi again  , I’m so pleased you’ve managed to get some rest, make sure you ask for some stool softeners to combat the constipation that the morphine may cause, I took Laxido or Movicol. Try not to worry too much about the chemo, there have been others here that have had to go with the radiotherapy alone because of adverse reactions to the chemo & have had really successful outcomes. 

    We’re here to support you however we can.

    Nicola 

  • Hi everyone! 
    I’m 13 days post treatment and am still suffering with cystitis. I’ve been taking antibiotics for 3 days now and there is no improvement so I think it likely that they are the wrong antibiotics. HasDisappointednyone else had this post treatment? I know that radiotherapy can cause non bacterial cystitis but I took a urine sample to GP last week and it showed infection. Apart from this my bottom has healed Disappointedally well. Just feeling a bit down because I’m so uncomfortable. I have taken Morphine and Tramadol and it has made no difference to the intense irritation I’m experiencing. I can’t sleep getting up.

    very 15 mins for a pee that’s excruciating. Feeling a bit sorry for myself 

    Ps sorry for the emoji’s- dot know where they popped up from!

    Happyflower