My cancer journey update

Hi Figgywig,

As so many on this platform have said, welcome to the club no one wants to join! I'm glad you're on this forum, because there are fabulous, supportive people here who will answer your questions and share their experiences. As for myself, I finished the same treatment you will undergo about 11 months ago. People have different experiences, but I can say that the treatment is doable, if a bit of a challenge towards the end of radiotherapy.

As far as must-haves, sitz baths are great. I don't have a tub, so I bought a portable one. I also bought a peri-bottle, which has been an absolute must for me (I still use it!). I'd also add water wipes and chux (those underpads you can put on your bed so you don't have to change the sheets all the time when things get a little weepy down below towards the end of treatment) to the list.

I am sure there are other items that people will recommend, especially when it comes to skin care (very important), but since I am in the States, we have different products, so I will leave it to those who live in the UK!

Best of luck with your treatment. I know some people on this forum were able to drive themselves to treatment, so hopefully they will chime in. Take care. Xx

Thank you - I have got a sitz already! So one thing in hand. Will definitely order the things for the bed as I ruined numerous towels after my surgery and created huge washing piles that I struggled to deal with! Not heard of a peri bottle - is that to help clean the area? Well done on seeing your treatment through and great to hear you are nearly a year along. Big thank you and I am logging on Amazon now to get ordering and trusting some good cream advice is forthcoming x 

Hi Figgywig,

The peri-bottle is basically a squirt bottle that you use to clean the area (sort of like a portable bidet). Someone on this platform recommended the Happy Po, which I ordered. I also bought a second one with slightly more volume. 

I can't speak for everyone, but my undercarriage is fragile after treatment and I can't use regular toilet paper except to blot dry. My skin simply can't handle it. So the peri-bottle is a must for me.

During treatment, I started with water wipes and then progressed to the peri-bottle as my skin became more impacted by the radiotherapy.

Anyway, I hope this helps and I'm sure the others will make recommendations too. We're all a little different, so it will be great to hear others' thoughts! Xx

Hi Figgywig,

Poppydays has given you some good tips - I also have a Happy Po and still use mine too.

I drove myself to my radiotherapy and it was quite a trip everyday, just over an hour each way. I was ok; my appointments were in the morning and I just came home and put my feet up in the afternoon. It did get quite tiring towards the end, but not enough to be a problem, although I know some people do find it tough. If you wanted to look into getting hospital transport, there are volunteers who drive people to appointments and that might be useful to you, especially the final week. Check with the hospital where you are being treated.

You can start moisturising down below, the entire area in your pants really and the tops of your legs, using something gentle like E45 or Aveeno - others here will recommend. I didn't do this because I didn't know at the time but the radiographers gave me Flaminal which I used from the first day of my treatment. I did burn a little but healed quickly. Oh and don't apply it when you have any scans or appointments, just in case.

I'd just add to do some shopping and get some snacks and small meals ready, I just couldn't be bothered cooking and I did lose my appetite a bit.

And although the actual radiotherapy sessions are quick, your first one when you will probably get your chemo sorted out too can be a long day with a bit of hanging around so take food and drink and something to do. And a power pack for your phone so you don't run out of charge.

Good luck, stay in touch. xx

Fabulous advice thank you and I am heartened you drove all through your treatment and my journey is shorter than yours, so I should be able to see it through.

Really helpful about ready things to eat as when recovering recently I wasn't bothered to cook either. They are worried about weight loss so snacky bits if not too bothered about eating will be good idea for those days and that first appointment.

I hadn't thought about a power pack...adding that to the list too! As well as the moisturiser.

Hi Fuggywig

from the start of my treatment, every morning before I headed of to my treatment I sat in a small bath of  Epsom salt the one for eczema, dry skin and psoriasis.

when going for a wee I wiped myself with E45 on toilet paper then I would put on a cream called Sorbaderm this was a prescription from the oncologist nurse or Cavilon both are excellent barrier creams, and although my skin went dark and pilled that’s  the only thing I got, and it didn’t  hurt at all, however I did have what felt like thrush and got all the stuff you would treat yourself with but the cream I got was slightly different as it didn’t have any metals in it and I didn’t use it before the radiotherapy session, I also use antihistamines that was absolutely brilliant for when you were itching down there. 

My oncologist nurse was so pleased with the way I kept my skin down there in good condition, the last week in to my treatment I had a sore at the top of my bum which I think was from the radiotherapy beam they gave me some dressing for it, I took antihistamines this  was really itchy and I kept it dry with the stoma power ( Brava) which I call my miracle powder I use it for everything, I did end up with a stoma for life. 

luckily  for me my husband drove me to hospital every day it was about three4 of an hour to the hospital but every day after that I would come home and just lay in bed. It did make me tired.

Hope all goes well for you

Laura x

Hi Figgywig I drove myself to treatment everyday ( 2 hr round trip). I used e45 to start and then aveeno, the hospital provided me with flamigel, flaminal hydro and forte and instillagel. Water wipes and mens baggy boxers were my essentials. While treatment wasnt a walk in the park it wasnt as bad as i expected. Good luck. Sending hugs. Xx

Hi Figgywig

Good to hear you have a date set for your tattoos and your first treatment appointments will follow soon.

I drove each as well but it’s not for everyone, also worth considering the parking as some treatment hospitals will have always have spaces and free parking and others will be more difficult or it will be more of a hassle to park.

I prepared by using the moisturiser Aveeno and didn’t really suffer with skin issues, I was back to using normal toilet paper a week or so after treatment but preferred to clean with wet wipes in the early stages and then with Zeroveen and at the end by showering.

I did have a daily routine, up early just after 4am, eat, drink and visit the loo so all clear before the appointment, then out of the door between 6.30am and 7.00am to arrive between 7.30am and 8.30am. Usually back home between 10am and 10.30am, then work until lunch, most days I went out cycling for about 1.5 hours at lunch time. Back to work, then in the garden from about 5pm for an hour or so, I didn’t mind cooking or gardening and actually wanted to keep busy as the last thing I wanted was to be sat around doing nothing. Occasionally I took a nap after cycling and before going out into the garden.

Hope your treatment goes well

Monty xx

Hi , 

I didn’t have an appetite during and for a time afterwards and lost weight .. 

I would try little and often ..

I would have small bowl cereal , then a couple hours later toast , then for meals I would just snack on hard boiled eggs , avocado and cottage cheese with a banana and grapes for desert .. then I discovered fortisip compact .. still taking one a day nearly 2 years later !!

take care 

Chrissie xx

Wow, TheMont  that's pretty impressive!