I don’t know what to expect

  • 10 replies
  • 64 subscribers
  • 375 views

Hello newbie here. I wish I found this site sooner. 
I am scared to death.. 

but my story start with I thought I had a hemorrhoid. So I went for my colonoscopy and they said that they can not remove it I would have to see a surgeon. So I go to the surgeon and he tells me I have squamous cell carcinoma. From hpv. 
so I did all the scans and they found the beginning of lung cancer also. Turns out it is a separate cancer. So I have two primary. Monday November 25 I go for lung surgery. No radiation or chemo.  
but my real problem is my butt.  It hurts all the time. I can not ever get comfortable. Sitting especially and walking a lot kills me. And it seems the pain is in my buttocks also. It hurts to sit on the toilet.
But they are not doing anything with my butt till after my lung heals enough. 
I am scared to death about radiation therapy how painful is it?  I live alone so I will need to do everything for myself. 
any thoughts.  

  • A day at a time with faith in the vastly experienced NHS. That’s my advice. Also, ask for increased strengths of pain killers. Living alone through this is going to be tough. Any chance of asking a close friend to stand by, even move in when the going gets tougher. I’ve completely my radiation therapy this week and it’s been manageable up until now. Just as I was told the next few days will be the toughest.

  • I hadn’t finished. Don’t like the way this site operates. As I was saying - get in some help for those last few days after the treatment is over. Let them sort out the lung first. And don’t dwell on your condition. I distract myself with YouTube clips, steaming movies, books and writing. I refuse to be upstaged by my bum! Good luck. 

  • Hi

     Welcome to the club none of us what to be in. With regards to your current pain I would ask your doctors if they can give you any pain relief. The radiation therapy doesn't hurt when you are having it done but some people get toilet issues and burns once they get into treatment and some people sail through with no issues but as long as you keep your team informed they will give you pain relief and creams. I live by myself and managed fine although I took advantage of anyone who offered to do housework for me. Sending hugs. Xx

  • Hello ns0302

    I am so sorry to hear of your diagnosis - on both fronts.  And we can all empathise with the terror when first finding out you have cancer - I walked around in a bubble of fear and disbelief and kept thinking they have made a terrible mistake but of course they hadn't.

    It is just as well they did all the scans and found the second cancer as it doesn't sound as if you had any symptoms.  Monday is just over a day away, and whilst you are in you will undoubtedly have painkillers that will help with what you are going through with your anal cancer.  They can also prescribe strong painkillers until you have the treatment for the anal cancer so keep your treating team informed of everything you are going through.

    As Bungle has said, the actual radiotherapy doesn't hurt at all and is over in five minutes, and symptoms show very gradually and don't come all at once and usually towards the end of treatment.  But again, your team will prescribe anything you need.  It is only 28 days and it is surprising how quickly the time passes.  If you can call in any favours from friends and family that would be a great help, otherwise stock up on whatever food takes your fancy and that doesn't involve much preparation.  And accept that you will be fatigued and sleep as much as you needs to.

    We have lots of tips and coping strategies we can share so once you are healed from the lung surgery and know when the treatment for the anal cancer is due to start please let us know.  And we are always here to support if you need it.

    Big hug

    Irene xx

  • Hi ns0302,

    So sorry to be reading this but you have come to the right place, although I don't have any experience with lung cancer, 

    but was diagnosed with scc anal cancer, and have been through the radiotherapy, I assure you that you don't feel a thing while its happening but you may or may not experience some side affects, I was like you scared stiff of radiotherapy not knowing what to expect, but it really is fine, when I started  I think it was about the second week I started feeling some discomfit down there like thrush, I was told to use antihistamines I also found some Canestan cream that didn't have any metals in it but as long as you don't put in on before your radiotherapy its fine, just put it on after your treatment has finished, I also used a cold flannel there and just lay in bed with leg apart.

    I had Epsom salt baths every day, I used e45 cream to wipe myself with after going a toilet very soothing and then put on Cavilon which is like a barrier cream which I was given, and then just as I was finishing treatment I had a sore come up on my bum, I was given some dressing to put on, I also used my stoma powder to dry it and antihistamines for the itching, other than the thrush type feeling my skin down there went brown and peeled but was not sore at all and my oncologist nurse was very impressed that my skin stayed intact.

    Please also speak to either your Dr or your oncologist team and find out about pain relief, at first I was using paracetamol and ibuprofen and a hot water bottle but that wasn't cutting it so I was put on Oramorph which was a life saver and still on it today as still have pain from my bum, but I was given a stoma before my treatment started and the radiotherapy has left me with 2 lumps of scar tissue which is stopping me from going to the toilet and still inflamed so have my stoma for life.

    I hope all go's well with both treatments my sweet, and make sure you have some support from family and friends as  its quite tiring having to go to the hospital everyday, and if you are in bed asleep all the time so be it  your body needs the rest being kind to yourself.

    Take Care Big Hugs

    Laura x x   

  • Hi,

    First, all the best for your surgery tomorrow; it sounds as though they have fortunately caught your lung tumour early. Hopefully once they have done the op you will be able to start preparing for the anal treatment.

    As others have said, radiotherapy is not painful at all, don't worry about that. In fact it seems amazing that we can hop on to a table for a few minutes and the tumour is being destroyed.

    I drove myself to all the sessions and just had a rest and read or watched some junk TV when I got back. If you can, once you have recovered from your lung surgery, start making some plans for what you will eat during treatment so that you don't have to do major cooking. Many of us find we just don't feel like big meals. 

    Have a read at the rest of this forum, there is lots of advice and suggestions for coping, and feel free to post if you have questions or worries and you need some support.

    In the meantime, if it helps, I had a really sore bottom before treatment (that was my only symptom) but after a few sessions it got much better, I think the radiotherapy starts to shrink it quite quickly so you might get some relief soon after you start. But I would tell your medical staff that you are in severe discomfort with it now, and see if they can give you something to help you through. 

    Let us know how you go, xx

  • Hi 

    I’m so sorry to hear your diagnosis. I literally couldn’t sit down in August! The pain took over my life and it was actual hell. I got Botox in my bum and this is the only thing that has helped! It’s honestly amazing! I’ve just had my second dose today. This is nhs and done under a general. So my advice to you if you’re really struggling with the pain especially when you have a bm, ask for BOTOX! Good luck with all your treatment xx

  • Thank you so much for all the kind words and information.  
    I had my lung surgery yesterday and she said if I heal the way she wants we can Start the radiation /chemo in two weeks.  
    merry Christmas to me right..  

  • Hi ns0302, 

    Glad to read you seem fine after your lung op, and hope you make a speedy recovery for the start of your treatment, I know it’s not great having to have it over the Christmas period but the quicker you start it the quicker it will be over with. 

    I had my stoma done the week or so before Christmas I was dreading it thinking I’d have to spend Christmas in hospital but luckily I got myself out of the a few days before. 

    best  of luck with your healing 

    Take care

    Laura x x

  • Wow Miss Bear I have never heard of that one! I would have asked for Botox in the bum if I had known it is available. Was never offered or heard about it. Maybe only certain hospitals offer it or don’t like to advertise it due to cost.

    Julie