Newly diagnosed and starting treatment

Hi Jean 

I have been through this myself it’s not as bad as you think the chemo only takes about 10 mins the radiation you don’t feel it might get sore down there  after 3 weeks roughly and the chemo tbs are ok after you have got through tomm you will think why was I so worked up.  I hope everything goes well for you tomm but honestly nothing to worry about . Good luck and bless you I cried the morning I had to go first time as I was scared . I also made a chart counting the days I had done off. If you need any more help I am always around for you to contact me 

don’t worry you will be ok let me now how you get on xx

Hi Jean,

Sorry you're here in the trenches with us, but I hope it helps to know that you're not alone!

I had the exact same treatment except no tablet chemo (which doesn't seem to be a Thing here in the states, at least not that I've seen).

I finished my treatment in early April. I went in with the mindset that I'd be one of the lucky ones, like Jean, with minimal pain and side effects. I found that kept me more calm and balanced than researching on Dr. Google. 

Well, I wasn't, but I still think that approach was right for me. I got through most of the treatment without too much fuss, other than getting up early every day for the hour drive to treatment. I am blessed with fantastic friends and family so had a driver every day, which was wonderful. The last bit of treatment, which got extended, and the recovery, were really rough. It was a put-my-head-down-and-plough-through time. It took a few weeks before I started to see light at the end of the tunnel. Since then it's been a slowly improving road—not back to normal, because I hadn't been 'normal' for a couple of years prior to the diagnosis, but to something better than it was. 

I don't suggest going down the rabbit hole of Dr. Google, but do prepare yourself. Get a bidet attachment for your commode if you can; if not, get a Sitz bath and a few peri-bottles to keep around to clean yourself when you start to get sore. A wonderful friend made me a basket filled with wet wipes, soothing lotions, disposable panties, hard candies and a delightful brass bell we dubbed The Summoner for me to let my devoted swain know when I needed him. 

It's hard not to get worried and scared. I think most of us do. But don't make yourself crazy. Everyone's journey is a little different, and if you're one of the lucky ones, there's no point in making yourself terrified over something that never happens. And it doesn't help even if you're not one of the lucky ones. 

Keep coming here, reading the stories of others who have been on this road, and ask questions. This community is brilliant.

Tally ho!

Suz

Oops, I meant to say 'like Jennygirl', not 'like Jean'!!

Hi Jeanbean, 

yes iv been through the same, it wasn’t as bad as I excepted it to be, I think they give you the worse case scenario.

I had my chemo infusion which didn’t take long, then on to my Radiotherapy a little daunting when I first got in but it was okay didn’t take long I was in there for about 10/15 minutes if that, I think the worse thing all the way through was having to have a full bladder, and few times I had to wait longer, so had  to try and do only a little wee to try and easy pressure, trying to stop after a little release was very challenging haha. 

unfortunately after 4 days I had  a bad reaction to chemo, where I was rushed in for I suspected heart attack and spent 6 day in the cardiac care unit, so couldn’t have chemo after that. 

after a couple of weeks a felt quite itchy down there but this is all part of side effects, I used e45 to wipe myself and used a barrier cream they gave me I used antihistamines as it helps with itching, and everyday I had a epsom salt bath so psoriasis dry skin and eczema which worked absolute wonders for pain relief I’m gave been taking oramorph again couldn’t of lived without it. 
apart from the itching I wasn’t sore at all although my skin did peel along my groins. I also  had one small area at the top of my bum that was a little sore but soon went.

I hope all go’s well for you tomorrow 

take care

Laura 

Hi thank you for reply. Back from appointments and just a long day and you are right not as bad as I was thinking in my head.....

Going to try to keep a journal. 

Are you finished with your treatment?

Thanks x

Thanks Laura 

Hope you are alot better now. First day over so chin up and keep going 

Jean

Hi Suz

Thanks for your reply and a wee bit of a laugh at 'the summoner'

I will look into the sitz bath and peri bottles

My hubby s work is flexible and he hopes to do the most of the transport (45 mins) for 5  work days and then off for weekend

Thanks for the encouragement and support 

Jeanx

Hi Jeanbean, so glad it wasn’t as bad as you expected, I’m doing well my first MRI showered that my tumour has shrunk considerably, however I still have some lymph nodes that are enlarged, but like they said the treatment is still working months after so when I have my next MRI in September I’m hoping for another good result fingers crossed.

take care 

Laura

Hi jean

glad you was ok today and everything went smoothly for you .   Yes went through finished xmas , had 2 mri since was told all clear you have 2 mri one every 3 month and then you just get seen by oncology every 3 months for 2 years. As I said last night I did a tick chart  and ticked it off every day I did 5 weeks go quick lovely at the end then you should go and treat yourself as you deserve it .  Hope everything goes good for you if you need some one to talk to I’m always here for you xx

You have had some lovely reassuring answers that I can't add much to, just know we are all thinking of you and have all been through it and are here to tell the tale.  My treatment finished mid-March and my haemorrhoids have given me the most problems since; mine developed during pregnancy over thirty years ago and didn't trouble me but they have come back with a vengeance.  So just be very careful that you don't get constipated; I was fine whilst I was having the chemo tablets, but when the treatment finished and I was on stronger pain medication I became horribly constipated with resulting engorged piles that resulted in me stopping the morphine and co-codamol.  I still have painful bowel movements and take a stool softener (Normacol) every day that helps.  Sending you a big hug. x