Starting Monday - Help!

Hello Willow26,

It’s such a scary time in the few days prior to starting treatment and going in to the unknown. I can absolutely understand you feeling terrified and remember so well the fear of what was to come.

To answer your questions. I definitely had some nausea in the first week following the Mito infusion but this was helped by anti sickness tablets, which you will be given. It wasn’t pleasant but was completely manageable.

My hair thinned a bit but not noticeably to anyone else ( and I had quite thin hair to start with). You are very unlikely to lose your hair on this regime.

I had no significant burns until week four when it started to feel sore. This came on gradually and your treating team will monitor and give you whatever you need.

I didn’t have a stoma, but actually think it would have been better if I had as opening bowels was definitely painful. I know that many of this group did have one and were actually grateful , but I’m sure can give helpful advice.

 I did feel tired but this was also something that progressed as treatment went on. I had to have a rest in the afternoons but despite this I got out for a walk every day during treatment as it felt so important psychologically.

Be aware that you will probably be asked to drink a lot of water prior to each treatment. On my first day it took a long time as I kept being sent back out to drink more before they could go ahead. I quickly learned!

 I felt very relieved after day one as it wasn’t as bad as I’d expected and hope it’s the same for you.

 Wishing you all the very best for Monday and I hope that everything goes as well as possible. Xx

Hi Willow26

You will probably be given an anti-sickness tablet to take before the Mitomycin C infusion, I didn’t have any nausea from either so can’t comment on when that would come on. And the only other side effect I can report from that was I felt a little like I was starting with a virus the next morning but was fine again the day after. If you do suffer from nausea that they have many different types of anti-sickness meds they can give you to counter that.

Hair loss isn’t expected with this treatment but I have seen it reported but most who lose some report a very gradual and slight thinning only, that’s what I had.

Sorry I can’t comment on the veins as I have really good veins and I can say the infusion was into the back of my hand not higher up where they take blood from.

I didn’t burn so that didn’t cause an issue, I only had a very slight reddening in the last couple of days of treatment that I was only aware of by looking at it.

I did have some discomfort when sitting but that was from inflamed internal parts being compressed when sitting and only required an adjustment to my seating position or posture. But I wasn’t able to wear anything tight and or unflexible around my waist like jeans or a belt as again internally that caused a lot of discomfort.

Washing and dressing wasn’t an issue at all but going to the toilet and cleaning up afterwards can be quite painful especially in the second half of treatment, there are plenty of tips on here regarding this.

The first day is a big day but once you’re over that and you’ve settled into a routine you should start to feel much more in control and most of the side effects that do develop come on gradually and you’ll have your bloods checked each week to make sure you’re coping with the treatment okay.

The radiotherapy session is painless and quite quick, if there is any discomfort it’s usually from having a full or fullish bladder but again you’ll get used to it.

I hope it all goes smoothly for you next week

Monty xx

Hello Willow

PEB and Monty have given some excellent advice and information, so I will try not to repeat.

I mentioned to you that I had a stoma fitted pre treatment.I started chemoradiation a week after surgery and it performed perfectly. I had a different chemo which required lots of fluids so Stormzy the stoma was quite active and I think that is normal for all chemo.

I ate very light before chemo and always emptied my bag before radiation and chemo. Leaks have never been a problem, but I carried my stoma supplies just incase, new bag wipes etc.

During radiation I wore knickers that fitted under my stoma bag, wear what ever makes you comfy. I would lower my knickers to reveal the tattoos and flap my stoma bag to one side. The radiologists will keep you right, so don't worry, painless and over quickly.

On chemo days my output was very loose, this is normal. I kept a watch on output and made sure I drank lots of water and electrolytes, coconut water is very refreshing. If your output gets high it's important you speak to your team, you may need diahrria meds. I kept my diet quite bland during treatment, so had no problems with digestion and output.

On chemo days, my bag would blow- up like a wind sock. The nurses would disconnect me, I would empty the bag and we would start again. The nurses have seen it all, they will support you. 

The stoma can shrink due to the chemo, so keep an eye on your bag size. After chemo I would change my bag and check my stoma, bagless in the shower works for me.

Totally understand your difficulties with veins, mine are small and deep and even with flushes block quickly. The nurses did struggle and when I was cold and dehydrated it was worse. I did have one incident with the chemo, but the Sister reacted quickly and all was well. As a last resort the nurses would run my hand and arm under a warm tap and this seemed to help. It made the IV chemo that bit harder, so might be worth chatting to them about other options.

Just to repeat, the first day is long and stressful, but after that it gets better and you develop a routine and feel more in control.

Wishing you the very best for Monday and your ongoing treatment.

Ally xx