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

Huge thanks AllyL , TheMont  and PEB24 all your wisdom is very calming. You make it sound manageable and I think if things build up, it should flag any issues etc. I really appreciate you taking the time xxx They've booked an ultrasound to site my cannula for chemo as it took 4 goes to even get blood today!!! Thinking of you Peb24 and Ally especially as I know you are both on journeys, love Willow xxx

Hello Willow26 

Being in a complete spin is totally understandable, but you will be surprised how quickly you settle into a routine.  You have had excellent advice and all I can add is keep your treating team totally in the picture about anything that you are finding really difficult.  They won't be able to eliminate all the side effects but can help with medication to ease symptoms.

I feel your pain - the last time I was in hospital they had to use a 'vein finder' which uses near infrared light to find a vein to get a blood sample and even then it was sore!  When I had to give a blood sample I used to travel to hospital with the back of my hand and my lower arm encased in a towel and a hot water bottle.

We will all be thinking of you on Monday and hoping all goes well - you have a small army of people here virtually holding your hand.

Big hug

Irene xx

Thanks Irene75359 sounda like we arevein buddies! Two of my LFTs were really raised so MRI Monday - could be after the stoma op linked to the drugs/antibiotics or very fast mets (hoping less likely as PET 4 weeks ago was clear...) x

Good luck Willow, you will feel much calmer once your treatment is under way, so look after yourself this weekend and you'll be ready - think of this as a couple of days of preparation. Remember to take drinks and snacks and something to do as the first day can be a bit drawn out.

You've got this!

Thank you Willow. 
Absolutely all the best for Monday. I hope that they can site the cannula easily with the ultrasound and hoping that day one goes as well as possible for you. 
Big hug xxx

Hi Willow26 ,

Firstly the emotions you have right now are completely normal, reading your post took me straight back to before I started my treatment, I had most if not all of those same questions! 

You've had some great replies already so I’ll just give you an account of my experience.

I had little to no side effects from the chemo side of the treatment, the mitomycin infusion on day one lasted only five minutes or so although the prep for it was long, I had to sit & wait for it to come from the pharmacy to the unit but in the meantime I had bloods done, a cannula fitted & a saline flush hooked up which ran for what seemed like a long time. I was also given anti-sickness meds & a supply to take home. I felt a bit tired over the next day or two but that may well have been the stress of starting treatment, I got a couple of tiny mouth ulcers & that was about it. I had a very slight touch of nausea but that only lasted a day or two. 

With the capecitabine oral chemo I stopped taking the anti-sickness as I just didn’t need them, my hair thinned a little but only I noticed & as treatment neared the end my hair was dryer than usual but the condition soon improved after treatment had finished.

Regarding the radiotherapy, you feel nothing while you’re receiving your treatment, it’s totally painless & over very quickly. I suffered a touch of radiation cystitis towards the end of week two but my skin held up really well & I was supplied with lots of creams etc., by my lovely radiology team, they were wonderful. My skin was inflamed & hot to touch by the end of treatment, you’ll find this builds gradually towards the end & doesn’t happen all at once, mine didn’t break down at all although the two weeks after my last treatment were pretty uncomfortable. 

I didn’t have a stoma but from wisdom I’ve gained from this forum it will be of benefit to you especially towards the end of treatment & during your recovery as the worst part of this treatment for me was having a bowel movement after treatment had finished, that was pretty painful so in my humble opinion a stoma is a plus. 

The fatigue was a prevalent side effect for me but it was nothing an afternoon nap & early nights didn’t resolve & in hindsight I could have quite easily have driven myself to & from my daily appointments. 

I’m sure as with many of us you’ll find that once that first day is over you’ll settle into the routine of your daily appointments & you’ll calm right down, so much of the panic for me was fear of the unknown I think. 

Wishing you well for Monday, please let us know how you get on. 

Nicola