Do's and Don'ts through chemoradiotherapy

I’ve attached a link to a post that we did about chemoradiotherapy below

  Radiotherapy care top tips ! 

It’s important to only use the creams that they give you on the area being treated and you may find that you’re given a bag of creams and tablets at your pre-treatment appointment. 
Theres is a post ongoing at the minute that you might like to read?

 Halfway through treatment 

You will be warned about all the possible side effects but that’s not to say that you’ll get them all. A lot of people have found this stage of the treatment very tolerable so please go with an open mind and take each day as it comes? Keeping life as normal as possible is a great attitude - I had early morning appointments and went into work straight after - so tick the weeks off and have a treat after each one

Take care

Karen x

I did the 5 weeks of CRT starting early Aug.  Virtually no info from oncologist, he just wanted the consent forms signed and wanted to point out that the oral chemo was still serious chemo and was to be treated with respect, emergency prescription for IV anti bi's if I got into trouble, helpline number. 

No info on diet or alcohol intake.  I just went alc free having read up on stuff.  On reading up on CRT I got scared re the side effects of D&V especially as I had a 50 min drive each way, each day with no toilet stops.I found it really hard to find any real people experiences, which is why I am on this forum so much.    I think it is easy to post negative experiences, but many people having no issues probably don't post.    I was also concerned about other effects on my girlie bits etc looking at long term effects of RT.

The reality for me (and we are all different) is that I had a vomit bowl, change of clothes, puppy pad on car seat and meds in my bag for each drive. Yep, one of my drivers had a brand new car, so really didn't want to christen that!    Thankfully D&V was never an issue and not the disaster I expected it to be. Phew!  Didn't know that would be the case for me though wnen I started.  Thankfully my friends rallied and I had a rota  of drivers for the 25 days.

What no one told me, was that for the planning scan and treatments,  that wind was a real problem for radiotherapy planning and treatment - so I learned to stay on a low fibre diet for my treatments with a binge on a Friday and Sat  (I'm a veggie, so low fibre is the worst for me).   My first planning treatment failed because I was too gassy - I'd binged on home grown veg the day before - how I wish there was somthing in their letter to say don't do that.  Evidently something they are thinking about doing as most people fail their inititial set up scans due to wind.  Doh!   I'd write the guidance myself - what a waste of resources for a known fail rate.  Anyway, not just for the planning scan, but for the treatment too, so go low fibre (happy to give you more info if you need it). Beige diet!

You need to have a certain amount of water in your bladder pre RT and as each of my RT appts was delayed for over an hour, it became hard to hold this (producing wind)  so - ask for windeze tablets and take them.  Eat low fibre Monday to Friday.    Be really honest at your weekly RT reviews as to how you are, how your poos are, wind issues, soreness etc.  The RT peeps know what you are going through, listen to them, take their hints on what meds you can ask for, what they can prescribe, what you can take.   My team were pretty up front with me, probably because I was up front with them, so they told me if I was bleeding to begin with, I'd probably stop bleeding week 2 onwards (yep) that I'd be passing bits of tumour and mucous (yep) that poos might get painful and they could give me numbing stuff for that and creams and painkillers if paracetamol didn't work, but you have to try paracetamol first before they can prescribe anything stronger (be aware that can lower your temp).   Evidently if you are not bleeding before CRT, it can make you bleed.  To be fair, I'd been bleeding for 5 months, so it was a massive relief to finally have that under control.  (yep, taken that long for my treatment to start).

Take your temperature every day.  Take the cape tabs 12 hours apart,  if you take the tabs first, then 5 mins after take some food, it might help you with nausea.  Ask about this with your RT review if you are finding nausea an issue.  Initially I took food first then the cape and I felt sick, that little adjustment helped. 

I took my cape after /before ginger biscuits in the morning (I'm not a breakfast person).  I used ginger to control my nausea and never needed to take anti sickness drugs - although by Thurs I usually felt sick, but only on a score of 4 out of 10.  If I'd gone above that - I'd have taken the anti sickness meds.  Again talk to the RT guys, score your nausea every day - they can prescribe you better meds if you need them.  I found that weekend break from the cape gave me time to get myself together and feel Ok for the week ahead.  

From week one, moisturise from low waist to mid thighs, all around, back and front,  twice a day - Aveeno is good, do creases. Do it after your treatment though, don't go in to RT covered in stuff.   You will get given RT burns cream to use on your tender bits and private creases - use it generously in your privates and ask for more when the small tube is done - they can easily produce a tube from a drawer, so ask for more if you need it and there is another cream they can give you if you think your bum or other  skin is cracking.   RT damage continues for months... years...

You are on cape, so moisturise your feet and hands at least twice a day. It can make your skin crack and other stuff.

If they don't offer it, ask about dilators as the RT can scar internal girlie tissues, start dilating on week 3 after RT ends with a prescribed lubricant that you will need to pick up from GP.  (ha, had a right fight to get that sorted, but you should be given a dilator set and prescribed a water based lube to use with it - I'm impressed with my prescription lube).  I didn't think I was affected in this area, but I was, so do it.   Ask for this in your RT review week 2 or 3, so you are prepared and your prescription is ready for you.   Don't tell the prostate guys in the waiting room that you have had a freebie - they will all want one.

For painful poos, have a sitz bath ready (can get on Amazon) or have a hot/warm bath to sit in in the evenings, added salt helps.  It takes the 'shitting hot coals' effect out of the equasion - really worth doing.  Even better if you can combine it with RT prescribed drugs/creams.  If poos are very painful you can poop in the sitz bath and chuck it down the toilet.  

Because of being on chemo too I also had weekly chemo catch ups.   I hit a brick wall end of week 2 when I started to have a really dry mouth and my GP wouldn't prescribe anything that didn't come from my 'team'  RT wouldn't and I ended up going to the chemo day unit to ask for something (which was supplied when I went there, bless them).  You have to be a little proactive.   I had eye issues too, but just got ASDA to deliver eye drops. 

You might find your apetite goes with CRT, but important to keep it up and keep your  weight up to sit within your planning scan.  Get a friend to bring you cream cakes. 

Re alcohol - I assumed I needed to be drink free for the whole of my treatment, but no one ever said 'don't drink'.    My chemo assessment before Bank Holiday my nurse said, 'what are you doing for bank holiday' and I replied 'wishing I was having a beer on the patio'.   She checked my bloods and said there was no reason why I couldn't have a couple of beers.    I ran out of there texting my partner to buy me some lowish alc beer!    I think the message is, you need to keep really mega hydrated, cause the chemo and the RT are blitzing your body, do a couple of weeks with no alc, but after that, you can have fibre and alc on fridays and sats.  Drink lots of water all the time, keep moving.  If you do take the anti sickness drugs, you'd better read the lit as you can't drink with most of them, in fact it can be dangerous too.

Post CRT for 3 weeks now - side effects get worse, before they get better.  I have a fat foot.   It's better if I exercise, but need to elevate if not on it.    I can fart safely without fear of accident for the first time in months.  I feel great - OK , bit tired at times, but really do feel good. 

As someone who was bleeding a lot before CRT, I'm now not bleeding at all - I feel better than I did before starting CRT  (evidently if you bleed before CRT it often stops it, if you didn't bleed, it can start it). 

Also, mens boxer shorts are good for air flow.  Don't expect to look sexy.

I'm now looking forward to 18 weeks of chemo.    (not)

Just message me if you need to know any more.  I know I had stacks of questions before I started - and no - CRT didn't lose hair, but that is just my experience. My hair is very fine, I have had it cut short, I expect it to thin or ditch a lot with chemo. 

Zoe.

PS - what Karen says!  :)