Treatment “survival kit” recommendations

Hi MummaBearb8d2d7 welcome to the club although im sorry you have found yourself here. For me personally water wipes, mens baggy boxers, limbo sleeve and plenty of moisturiser were essential. Lots of people on here bought a sitz bath and found it helpful ( i didnt so dont actually know ). If you have time i would batch cook some meals for when you dont feel like cooking ,i wish i had. I lived on cheese and marmite on toast. As time goes on and if you can go comando at home. Overall i would say listen to your body, try and get rest when you need it, eat what you can i had to cut veg as it gave me bad wind and the chemo changed my sense of taste. If you can try and get out for a walk at least for exercise but be guided by your medical team i was told to stop the exercise i did because of my picc. We are all here for you, good luck with everything. Sending hugs

 Xxx

Welcome to the club you didn’t want to join! I’m 5.5 weeks post treatment and feel pretty much back to normal apart from some minor changes to bowel habits (more frequent) that I can live with. 

For me the best thing I bought was a peri bottle, which I use instead of toilet paper, which feels like sandpaper during treatment. I don’t think I’ll ever go back, as the bottle makes me feel so much fresher. 

I agree with the going commando at home. During the final couple of weeks of treatment you could find me mostly laying in the sofa in a sarong, legs akimbo, getting air to the sore bits

I’d recommend asking your chemo team on the first day of treatment (the only day you’ll see them) if it’s OK for you to take antihistamines. My biggest side effect was itching, particularly at night, and taking a ln antihistamine before bed worked wonders, but I did check first if it was OK. 

overall treatment wasn’t anywhere near as bad as I feared. Yes, I was sore and uncomfortable and tired, but i was able to carry on doing most things, and went to a rock concert 2 days after finishing treatment. 

You’ve got this! 

Hi,

Some great suggestions already, I would say I also found the peri bottle the single best thing. Trying to keep a sore and burnt bottom clean can be difficult so just running warm water on it was so nice. It can also be good to use whilst you are actually having a wee, if you find that gets a bit stingy. I did have - and enjoyed using - a sitz bath and I think again these can be really useful to actually wee or poo into if it gets uncomfortable and you can just throw it all down the loo and flush it away.

I wish I had been a bit better at planning what I was going to do whilst I was just hanging around, fatigued but not sleepy. I ended up watching rubbish day time TV, so you might want to have a look now at anything you think might cheer you up or distract you in terms of movies, books or even something crafty if that's your thing. You may find you just can't be bothered once you start treatment.

Also as has been mentioned, shop and cook for small meals you think you might like. I had chemo tablets and found I sometimes just didn't feel much like eating. And treats. You deserve treats! 

Finally some moisturiser - you will see some recommended here and the radiographers will give you some once you get started, but prepare all over your undercarriage before you get started. Oh, and nice shower gel. Some people go for unperfumed, but I just needed the pleasure of a long hot shower with lovely-smelling stuff.

All the best - let us know how you get on xx

Hello MummaBearb8d2d7 

You have had some excellent suggestions so I won't repeat.  However, I was one of those who bought the Sitzbath portable bidet so talking from the voice of experience here!  I couldn't have done without it, I had quite severe side effects from the radiotherapy and in the last week or so of treatment and for a good couple of weeks after treatment I even used it as a loo for passing urine and having a bowel movement; somehow it was slightly less painful going under water and the Sitzbath is easily emptied and disinfected.

The other item I found invaluable for the same period was a disposable sheet.  It stuck onto the bed linen, I had some small leaks and and had so many creams and gels on and couldn't bear to wear any underwear so the disposable sheet meant I could rest easy.

Hopefully you will be fine for Christmas, the side effects don't all come at once and are much later on in the course of treatment.  We will be thinking of you next week, best of luck and please let us know how you get on.

Irene xx

for the burns i bought a sitz bath which was ok at the beginning but then i kept a jug in the bathroom, fill it with warm water (body temperature)..sit right back on the toilet and when you're ready to wee start pouring it between your legs..my appointments were always 2pm ish so hanging around was boring but i made sure i had knitting cross stitch crossword books jigsaws even colouring etc. i downloaded comedy films from netflix onto tv and tablet..comedy books on kindle.

the nausea was very mild, i tried to remember to take the tablets for the first week didn't bother after that. a few times i had camomile tea or a couple of ginger biscuits and they worked fine.

overall the whole 5 1/2 weeks were easy nothing like i imagined x

Hi   MummaBear

Glad to see you have your planning treatment dates sorted and are much closer to having the treatment booked.

Pre treatment I would start using a good moisturiser regularly to make sure your skin is prepared in advance.

During the first part of treatment I was able to wipe normally, in the middle part I used Zeroveen as a cleanser on some wet wipes and towards the end I mostly washed, as Bungle says a Sitz bath is a really good idea, I also I didn’t have one but as you progress through treatment you really don’t want to be wiping as that area is so very sensitive.

I exercised every day and felt and thought that beneficial all round although with the treatment and traveling additional sleep and was necessary and care is need not to overdo it also if I felt like a nap in the afternoon, I took one but I did carry on working to keep my mind occupied albeit from home.

Quite early in the treatment I disturbed sleep due to excessive gas and had to change my diet, basically cut out all greens. Once the diet adjustment had been made I was still up 4 or 5 times in the night to pee but I slept well in between.

You may or may not need something to sit on that takes the pressure away even if you’re not sore externally, I found the pressure pushed up inside and that was very uncomfortable so used whatever I could to put the pressure on my buttocks or upper legs, you may need to improvise with this to find what works best for you. When driving to my appointments I used to put my coat or jumper under one of my legs to alleviate the pressure and it works although it probably isn’t the ideal solution. At home on the sofa I used a split pillow or V shaped pillow and rode by bike with a saddle that took all the pressure off my perineum and that worked very well.

Good luck with it all when your treatment starts.

Monty xx

Thank you all! Treatment start now 22nd, will be a bit of a funny start with the bank holidays. I’ve done a good Amazon shop for all the bits you have all recommended. Hoping that preventative measures help the long term recovery. I’m guessing perineal area is the most affected?? 

Hello Mummabearb8d2d7,

Good that you now have your start date although of course not the easiest time of year to get going with treatment.

Wishing you well with all of it and for best outcomes. 
I can see that you’ve been given lots of good tips from so many forum members so not much to add. 

I managed to take a walk every day during treatment and although it was more difficult in the final two weeks, it felt psychologically helpful to be outside and I found it calming. I also developed radiation cystitis and this isn’t uncommon, so found that diluted cranberry juice and cystopurin sachets helped.

Soft easy clothing helps when going for the daily treatments ( although different units have different protocols on what to wear). The sitz bath was really helpful for me. 
Not too long now until you can start crossing the days off.

Sending hugs x

Yes, you're right. I found it was just like sunburn, and the area of my groin at the tops of my legs got burnt and peeled, but it didn't hurt. That's the area you should concentrate on moisturising from now really, but don't go to your appointments with anything applied as it can affect your treatment and you don't want them to delay just because you have moisturised your bits first!

I had a real sore bottom before I started treatment - that was my main symptom in the first place - but after a few sessions, that disappeared, so if you are in discomfort at the moment you should hopefully find that changes fairly quickly xx

Hi MummaBearb8d2d7 , another warm welcome from me to our little corner of the MacMillan Online Community although I’m really sorry that you’ve had the need to find us.

You've had some really helpful & informative replies to your post already so I’ll not repeat.

It’s good that you’ve got a start date for your treatment too. Remember we’re here to support you however we can. 

Nicola