Treatment start date

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Hi all

I start my treatment on Wednesday. Chemo first then radio and had a few questions that I'd like the answers too.

1. My bottom is very sore. My cancer is both inside and outside. Is this going to hurt when I have the radiotherapy? 

2. Can I drive myself to and from the appointments?

3. My toileting is very painful. I assume this is going to continue. Any tips for managing this?

Thanks in advance for your support and advice. Xx

  • Hello Feather welcome to the group. Sorry to hear about your pain but I can assure you that the actual radiotherapy sessions which last about 10-20 minutes are painless. Hospitals differ on how they prepare you before the session. I would arrive at the hospital and around fifteen minutes before I went in I would have to drink a certain amount of water to help inflate and protect the bladder. As to driving to your appointments I can only say as the weeks go on you may start to feel a bit uncomfortable for driving but some are absolutely fine with the drive all the way through. We are all different and the effects differ from person to person. I would advise you to buy a sitz bath which sits over your toilet seat. You can fill it with warm water to help soothe the skin and when you are having treatment you can use for urination and opening your bowels which makes it a little less painful. I got mine from Amazon and not expensive. I started to feel the effects from radiotherapy around the 4/5 week of treatment and a few more weeks after treatment stops. My hospital team were great with helping with pain relief and you should get a telephone number for your specialist nurse if you need help on anything. We are all different and some of us manage much better than others but we are here if you want to find out how we coped with the side effects. Have you any support at home and help with cooking or shopping? Thinking of you Wednesday 

  • Good morning Feather 653

    How good to have a definite start date. I found the waiting after scans so unsettling so that's great news.

    Sorry to hear how much discomfort you are suffering 

    My 'Gilbert' grape, my name for it is inside my anus and has been uncomfortable for around 4 months. I started chemotherapy and radiotherapy together on Wed 8th Nov. 

    The radiotherapy itself is painless it will target the area of the tumour and will likely over the weeks get more painful they may well give you a cream to apply to the area being treated to help prevent skin burn but the pain varies from person to person 

    I just remind myself that in the long term it will be worth it you may also get an upset tummy. I'm very windy and when I have to go I need to immediately...   

    You will see your radiographers daily and any issues you have can be helped with the right cream or medication  you should also see your consultant and head radiographer on alternate weeks that's how it works here in Swansea.

    Wishing you all the best for your future weeks ahead

    PaddyBud x

  • Thanks for your help.

    I see my doctor every week. To be honest that's the bit I'm most nervous about. I feel like I've got ptsd from the first time I saw her even though she was lovely. I've such 28 post it's on my wall and am going to take one down after each treatment to see it counting down. I live on my own. Are you still able to get up and about and do things for yourself?

  • I live on my own but I've got people who will help if I need. My auntie comes to clean for me every week which takes some of the pressure off. How mobile are you able to be? I've ordered one of those bath things. I've started just getting in the shower now after every toilet visit to make it less painful when wiping because I do have a 'wound' on the outside which is painful to the touch. It's this area that I had removed when they thought I had hemmheroids and it turned out to be cancer. Thanks so much for your comment

     X

  • Hello Feather 653

    It is such a good idea to mark the days off and you will be surprised how quickly it all passes.  As others have said, the radiotherapy in itself is absolutely painless, the side effects as time goes on less so, but your team will be on to it to help with pain relief if you need it.  I bought a Boots inflatable maternity cushion to sit on in the latter stages of my radiotherapy when I was feeling a bit tender which helped enormously.  My husband drove me each visit but I would have managed on my own, especially with the cushion.    I'm afraid I don't know how quickly the radiotherapy acts on the visible cancer, mine wasn't external and internally it was submucosal so I had no symptoms at all.  But you will be checked very regularly at the hospital and make sure you tell them if you need help with pain at any time in the process, they are normally very good at prescribing pain relief, particularly in the latter stages.

    We will all be thinking about you on Wednesday.

    Irene xx

  • Hello Feather, I am 28 months post treatment and although I haven’t forgotten those stressful times just before treatment as you are going into the unknown but you soon get into the routine and you deal with symptoms as they come along. The first couple of weeks I had cystitis caused by the radiation and I drank loads of water and cranberry juice which helped. I bought a soft toothbrush and gentle toothpaste as I read on here that you can get mouth ulcers which I did but this soon settled down. For me the first four weeks I was probably feeling okay but fatigue in the afternoon afound the fourth week and ended up having an afternoon nap. Luckily I am retired so not having to worry about work. Those that do can get help and hopefully you have a maggies linked to your hospital or something similar. My husband did do the cooking but I suppose I could have but made the most of his offer of help! You could batch cook and freeze for those days you don’t feel like cooking. You may only feel like grazing as sometimes your appetite just goes. Soups are great and soothing. Glad you have ordered a sitz bath. I also bought some soft cotton boxer typeknickers a size up and some harem trousers as I found anything rubbing uncomfortable. When you start ticking the days off it really seems to pass quickly as days turn into weeks and your day seems to be taken up with travelling to and from, tests, weigh ins etc. I am 68 so some younger going through this treatment may have a bit more energy than I had. Just look forward to eliminating this beast and live your life. Good luck tomorrow 

  • Hi Feather

    Radio does not hurt although mine was internal so can't say about outside tumours but reckon not. The radio only takes max 5 minutes but the set up takes bit more while they position you and scan first to check all is in right place. Sometimes it take longer if they have to come back in an move your position slightly.  I got so I could recognise every movement the scanner would make! I used to worry about any movement by me while lying there but they reassured me that they make room in their calculations for slight movement by you. The most uncomfortable thing is getting the water intake timed right.  You have to drink so your bladder is full for treatment a good 20-30 mins before it starts.  If it is delayed then you start getting panicked because of full bladder!  In the end I didn't drink until I got there and tried to arrive 40 mins before so I could gauge any possible delays lol. 

    As for driving - depends how far away you have to go.  I had an hour and half drive each way that I could not have managed and parking was a worry and so I had family taking it in turns to drive me.  After 3 weeks I couldn't have managed and after 5 weeks walking was more painful so someone else taking responsibility was a godsend. 

    As already said - sitz bath for toiletting. 

    I wish you the very best of luck and lots of hugs for the weeks ahead!

    Carole x

  • Thanks so much for replying. I'm 35 so hoping I can jump up every day and run a marathon before I go. Just kidding. I feel lucky to be able to consult you all and know what's ahead. The last two months have been a rollercoaster.

  • Thanks so much for your reply. My tumour had pushed through my skin to the outside so it is not right on the opening ots about a cm away. Funny to talk about my bottom with strangers bit you get used to it don't you when you are going through things like this. X

  • Hi Feather wait until the shape of your poos becomes part of the conversation Joy