New here!!

Hi Madge74b240b1  welcome to the forum although im sorry you have found yourself here. Rant away thats what we are here for.  I promise the time will go quite quickly and you will settle into your new routine. You will soon be out the otherside and getting your life back. Treatment isnt a walk in the park but it was nowhere near as bad as i had expected. Make sure you keep well moisturised and ask your treating team for creams if your skin is getting sore. Sending hugs. Xx

Hi Madge, 

Yes, you are right - the first infusion of chemo is usually mitomicin, and quite a few of us here were affected by it. I found it made me a bit nauseous and was worried I was going to feel like that all the way, but the other chemo drug they use wasn't bad at all, and although I took the anti-sickness meds at first I soon realised I didn't need them.

Once you get a routine established that fits in with your treatment you'll feel better and find some strategies to make it a bit easier with regard to your eating and hopefully you will start to get some decent sleep too. 

the real reason I wanted to contribute though was to tell you that if it's your tumour causing you discomfort, that may well ease up quite quickly after a few sessions of radiotherapy. My main symptom before diagnosis was a really sore bottom, and I just realised one day a week or so in, that I didn't have that pain any more. I hope you get some relief from that too, as the radiotherapy starts to zap the tumour. You will probably find your skin starts to hurt later into the sessions as it gets burnt, but keep using any creams they give you, and let them know if you need any more help.

I wish you good luck with it, and please let us know how it all goes. xx

Thank you  

Yes, mitomicin. Oncologist had said side effects were accumulative so I was completely unprepared for the tiredness that hit hard come the Wednesday, though for now that has passed. Thankfully I escaped feelings of nausea. 

Tumour or anus weren't really sore/tenderness until yesterday, wiping is becoming an issue and even passing wind stings a little - I've ordered various things off amazon (peri bottle, sitz bath, wet wipes) this evening, currently using wet cotton wool pads and will be asking about creams tomorrow. 

Xx

Hi Madge74b240b1 another warm welcome to the MacMillan Online Community from me although I’m really sorry to hear of your recent diagnosis. I'm also sorry that you’ve had a rough start to your treatment too! Hopefully once you’re on the medication you’ve been prescribed & on the oral chemo (it’s somewhat gentler on your system than the infusion) you’ll start feeling a little bit better.

As Mrs Vanilla has mentioned you may find after a few sessions of radiotherapy you notice a difference in the discomfort your tumour has been causing you, a few people, especially those with larger tumours or those like yourself that have had protruding tumours notice some shrinkage pretty early on, I’m hoping this will be the case for you. If you’re really sore try washing instead of wiping after the loo or maybe get some water wipes, these are what I found most comfortable to use as there’s no perfume/moisturisers etc., in them just purely water, I got mine from the baby section in the supermarket. Yes ask for cream tomorrow, I was provided with QV cream to begin with which is similar to an aqueous cream & each time I used the loo I lathered more on so it acted like a bit of a barrier cream. 

Please just let us know if there’s anything you think we may be able to help with & know we’re always here to support you however we can. 

Nicola 

Hello Madge74b240b1 

A warm welcome to the forum, and please don't worry, it is or has been a safe ranting place for many of us.  I am so sorry to hear of your diagnosis and the problems you have had so far, no wonder you are feeling anxious and overwhelmed.  Hopefully things will calm down a bit once your body has got over its first reaction to chemo.  And your treating team should keep a very close eye on you all during this course of treatment, let them know if you find things are getting a bit painful, they can prescribe medication the same day.

And you have probably read it on here but if not get a calendar and mark off those days - you really will be be surprised at how quickly they pass and then you can get down to the business of recovery.

Big hug, you will get there!

Irene xx