Pain seems worse on week 5 post treatment

  • 13 replies
  • 76 subscribers
  • 430 views

My husband is coming to the end of week 5 post treatment. The last couple of days he feels his pain is worse. He is keeping on top of his pain meds but worried that it might  mean that the treatment hasn’t worked. His neck lump is also still quite prominent. He spoke to his oncologist this week and she had just reiterated that they won’t know until he has a pet scan. When he goes to sleep he seems to choke like apnea.   Anyone else have pain that intensified at this time? 

  • Anyone else have pain that intensified at this time? 

    Yes. Unfortunately everything peaks at two to three weeks AFTER treatment end. I slept most of those two weeks. 
    If he’s in more pain then increase his pain killers. It’s a no brainer. 

    His neck lump is also still quite prominent. He spoke to his oncologist this week and she had just reiterated that they won’t know until he has a pet scan.

    Cancerous lymph nodes can take months to disappear 

    His oncologist is right about not knowing till he has his post treatment scan after 12 weeks. I had mine at 16. 
    How many times have folk told you this cancer is  curable and cure rate is over 90% survival at five years. 
    Try not to worry. There is absolutely nothing you can do except support your husband through this. Worrying about it will just make you ill. 
    Trust his body and trust his oncologist. She knows what she’s doing and does it every day. 

    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
  • Yes I was the same - hard time to get through. My lump in my neck took ages to go down too. It also went up and down to keep me guessing! 
    Sorry I can’t give any words of wisdom to make it better, it’s all part of getting well - just takes time.
    Get lots of rest - both of you. 

    Rachel 

  • Hi we all felt worse after treatment. If I’m honest  the only  people we listened to were my team of speech therapists and my lovely oncologist. My sister in law couldn’t understand why i couldn’t eat as her best friend was going through breast cancer treatment at the same time as me and she could  eat. My hubby bluntly  said  Hazel  doesn’t eat with her T…s  our cancers can’t be compared to anyone else including other head and neck patients we have similar issues but not the same.

    . Take me I’m the only  person I know,and I know a lot who suffered 3 years of burning tongue  ( from year 2 to 5 of recovery ) and it was burning when I ate anything fermented cheese yoghurt , condiments   But it went as quick as it came there’s no cure  apart from time.

    . So please take a moment to stop worrying. Our treatment very very rarely fails at the first hurdle. He will feel like crap the treatment hurts its poisons us it burns us inside out. There’s only  the scans that will tell and I wasn’t going to worry about them for the next 4 months. I got on with everythjng the best I could 

    Theres no point in having the scans too early either to put your mind  at rest they will only show hot spots I was 18 weeks before my pet Ct scan my oncologist refuses to scan too early as he says the treatment continues to work its magic and after all its killing cancer in a most delicate part of our body. So please don’t spend the next few months worrying about the what ifs concentrate in the what now’s. Lumps often take a long time to go down m6 advise is stop him touching then lymph nodes let the treatment work. 
    if he’s in pain increase the pain meds up to week 12 I was in 8 x 30 mg cocodomol and up to 40 mil of oramorph each and every day. Then did a slow withdrawal no way must he stop taking the medication without a phased withdrawal. 



    hugs Hazel 

    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  sounds difficult for you both. When does he have his PET scan? Sending best wishes for him over the next few weeks Nic 

    Supporting husband with HPV + tonsil cancer and lymph spread 

  • Healing ebbs and flows.  I am now 13 weeks post.  Three things I have noticed - healing is 2 steps forwards and one step back, everything take a frustratingly long time there is no rushing it and finally the brain seems to forget the earlier pain trauma and the current pain is the worst you've had; even though it may be less painful than earlier in recovery.

    I've started snoring post treatment - never did before - so I guess this is just a side effect of the trauma we go through.

    In all cases don't be scared to raise any issues with your clinical team between appointments.

    Peter
    See my profile for more details of my convoluted journey
  • Thanks Peter. It seems snoring is a common occurrence post treatment but I will make sure to mention it at his next review.Thank you for your reassuring message. 

  • Thanks  . We don’t have a date yet but sometime in July. Trying very hard to just concentrate on each day but easier said than done x

  • Thanks Hazel. I keep telling my husband “Hazel said” and “Dani” said when I am reassuring him now. He doesn’t want to join but is very glad that I get such kind and reassuring messages on here. Everyone is brilliant x

  • Thanks   . Your message regarding neck lumps has been so reassuring x

  • Thanks Dani. You are so right. I never show how anxious I am to my husband but the anxiety is taking its toll. I will try very hard to focus on each day and not PET scans. X