Tips for Chemo and RT before, during, after

Hi PrairieSky, sorry to hear about your mother. I am sure you are going to get lots of tips on how people on here got through treatment the best they could. No doubt many like myself got tips on how and what helped them. My first tip is a sitz bath. This is a bowl that fits on top of your toilet seat and you fill it it warm water and it helps when passing bowel movements or even passing urine early treatment as you are prone to radiation cystitis. Start looking after the skin down there now by keeping it moisturised. I used moogoo udder cream but some used good old e45. Get some loose boxer style knickers. I personally used a gel like barrier cream called StrataXRT which is quite expensive during treatment which you can read up about on the internet but I know others on here used various before and after the actual radiation treatment and not during as you should not have anything on the skin whilst that is being given. The nursing team at my hospital would check your bloods every week and also check everything going on with your skin.  Drink lots of water to keep hydrated and they give you anti sickness tablets which I did not use but some do. Your bowels do become inflamed and you can swing from being constipated or the other. It’s great your mum has you for support and that is a big asset. She may go off a lot of foods and just want small snacks instead. My husband did the cooking and I lost the ability to taste many things unless they were very sweet. Don’t get constipated as that can be very uncomfortable and you are given laxatives and stool softeners if needed. I felt very tired every day and would usually have an afternoon nap after my hospital appointment. The side effects if she has been told (long list!) are different in every one and they don’t happen all at once. It’s the not knowing that is the worst and the waiting. The first day for me was the longest as I had intravenous chemo and that was followed by daily tablets for five days then off for two when not having the radiotherapy. I point this out as my prescription did not originally state you only take the chemo tablets on days of the radiotherapy. After the first day you just went in for treatment. I had to drink a glass of water before that to help with the protection of the bladder. I also drank lots of cranberry juice. I have probably left some things out and they will be filled in by others on here. Julie

Hi Prairie, thanks for looking out for your mom by researching! It's a necessary thing to do, but you also need to be aware that knowing all about the side effects and tips for getting through it all can produce its own level of anxiety. For me, finding out what I needed to know AND going into it with the mindset that I'd be one of the lucky ones with few or no side effects was important for keeping my spirits up.

I was wrong, of course. But I still think going in with optimism was key, for me.

They gave me nausea pills with the chemo, as well as anti-nausea and steroid meds through the port. One nurse also gave me a neat little aromatherapy pen that I found super useful on the long drive- an hour each way- to daily treatments.

A friend gave me a cool little velcro pillow to attach to the passenger-side seat belt to protect my port while I was being driven.

My husband installed a bidet attachment to the commode in the main bathroom, one with a warm water option. It's been a LIFE SAVER! A little over $100 and worth every penny.

Assemble the bathroom supplies! She'll need plenty of wet wipes (unscented!!), a Sitz bath, a peri-bottle (I have several, one in each bathroom that doesn't have the bidet as well as one to take on the road), Balneol lotion to help clean the butt when touching it becomes almost unbearable, and a soothing ointment to apply after radiation (nothing on the skin when getting zapped.) I found most ointments and unguents unbearable- cancer also apparently made my behind allergic to almost everything although it never was before- but I found a brand called Calmoseptine that protects and soothes the pain.

I'm not sure where I got the idea that a month of recovery would see me right again. I'm two months out and still struggling, although MUCH less than before. It's a tough regimen and her body will need an awful lot of rest and recovery. I'm so glad she's got you!

Hi PrsirieSky, 

I was diagnosed with advanced Stage 4 N1 anal cancer, I was given a colostomy before I started my treatment, although I really didn’t want it, I’m so glad I had it done as from what iv heard and read it can be very painful trying to go a toilet when having treatment. 

my first day I had Chemo infusion  and straight after had my first radiotherapy, from then on everyday I had 3 chemo tables morning and night and the radiotherapy treatment everyday, unfortunately on day 4, I was taken in to hospital with chest pains and ended up 6 days in hospital for heart attack, but luckily it wasn’t a heart attack it was the chemo tablets, so I had to stop chemo, which I was worried about as I felt I was only having half my treatment, my oncologist reassured me that the radiotherapy was my main treatment.

so from day 1 and every day of treatment I was having epson salt baths the one for dry skin, psoriasis and eczema, I used E45 to wipe myself after having a wee, I would put some cream on some toilet paper smother it all over then wipe myself  and they gave me a barrier cream to use which I used after every toilet and after my bath, I did have a little itching at the beginning but this soon stopped, my skin went brown from front to back and my skin in my groin did peel but, all the way through treatment i wasn’t sore at all, I had one little area at the top of my bottom that did go a little sore but think this was because My cheeks was squished together and where I was sitting it just made it sore, they gave me some padded type dressing to put on it so my cheeks wasn’t rubbing together and making it sore, I do believe because I did all the above it stopped me from having really sore skin.

I found throughout my treatment everyday I would nap on and off once home from my treatment, tell your mum to allow herself to sleep when she needs it, I also have oralmorph pain relief for the cancer, I find the whole of my bottom inside,and  hip area have like a Pulsating pain and it gets worse when iv been to the toilet, as iv said I have a colostomy and I have mucus that comes from my bottom it got worse through treatment and still have it now and it’s when I release it, it’s when it can be painful.

I finished my treatment on the 5th if April, and am recovering very well with no real side effects to talk about, I went back to work on a phased return just s few hours a day, which has helped me to to get back to some sort of normality, but if I do something strenuous than it does take it out with me so I have to just take things easy and rest as much as I can on my days off .

wish your mum well if you need to ask me anything please don’t hesitate, this group has been brilliant for advice.

Lsura x x x

Julie, thank you very much for sharing this information with me!

Ridetbred, thank you! I appreciate the mindset piece you’ve shared. I never would have thought of it. 

Laura, I appreciate all of this information. Thank you for sharing!

Hi ,

Firstly I’d like to welcome you to the Macmillan online community although I’m really sorry to hear of your mums diagnosis. 

You’ve received some amazing responses already to your post so I don’t have a great deal to add just a tip that my radiotherapy team gave me in my first week of my treatment, although my skin held up pretty well throughout treatment (I moisturised the heck out of it before, during & after treatment had finished)  but I quite quickly began suffering with radiation cystitis, which unlike bacterial cystitis can’t be treated with antibiotics, one of the lovely radiotherapy girls told me to only wash with the QV cream they were supplying me with, an  aqueous type cream, as anything else kills off all the good bacteria down there, this helped a lot & even now 4 years on from my treatment it’s the only thing I use to wash with as anything else even if it’s ‘unscented’ still stings the new skin somewhat! Regarding the itching, this can be an issue especially at night it seems & can disturb your sleep, I used Piriton & that seemed to work for me so if your mum does experience this just the one-a-day Piriton antihistamine should help. Unfortunately the treatment does cause some stenosis, vaginal & anal, not a lot can be done during treatment but us ladies are supplied with a set of dilators after treatment has finished that can be used beginning with the smallest size working up the the bigger sizes to help try to stretch things a little. The advice is to use these regularly once the skin has recovered sufficiently but I would advise getting a decent water based, non scented lubricant to use with them also. 

I was lucky & didn’t suffer the bowel disturbances that some do throughout my treatment (meds will be provided for this if it happens with your mum) & as I said my skin held up pretty well but the fatigue was a biggy for me, I’d sleep like a log at night but by the time I’d pottered around a bit in the morning then been for my radiotherapy, generally early afternoon, I’d have to have a lie down & a nana nap after getting back from hospital & I’d still be ready for bed at 9pm, sometimes earlier! Unlike general tiredness you can’t push through fatigue so don’t worry too much if your mum seems to be napping more than usual, it’ll be what she needs. 

I hope all of the advice you’ve received helps somewhat, I would also advise your mum to just take it as it comes, although there are some common threads of peoples reactions to the treatment not everyone gets the full array of side effects & the severity of these differs greatly from one person to the next, they do also build very gradually & can be managed as such. 

Your mum is lucky to have you looking out for her & doing the research. I hope all goes well & please don’t hesitate in popping back with any queries or questions, we’ll try & help you wherever we can. Just to add if you feel you need a little extra support yourself whilst your mum is going through this we have the Family and friends - Discussion Forum where there’ll be others that are supporting family members or friends through their cancer journey very much like yourself. 

Nicola 

You’ve made great points! I’m from Canada and was wondering what QV is? Is it petroleum jelly/Vaseline?

Hi again , the QV cream was like an aqueous cream or emollient cream, if these are available in Canada I would advise trying to get one that’s SLS (sodium lauryl sulphate) free, SLS is a detergent & recent studies on people that use these creams for eczema has shown that the SLS can cause some skin thinning which is not what you want on the already fragile skin during & following radiotherapy. Your mums treating team should also be able to advise on any creams etc., that she can use during/after treatment.

I hope this helps. 

Nicola 

Thanks for the info, Nikki! I will let her know