Low and scared

Hi Nina60,

Like you I was quite worried about the possibility of skin damage from radiotherapy.  I had read many accounts of the skin problems experienced by breast cancer patients.   In the event I had no skin issues at all, and when I chatted to fellow patients their experience was also Ok.  I think the modern techniques of RT enable them to target the beam at the inner pelvic area while reducing the effect on the skin.  I was advised to look out for any reddening of the skin, to wash with gentle products,  avoid lengthy soaks in the bath and to use a good moisturiser.  You don't need anything special, mild ones like  E45 are fine but avoid Aqueous Cream or any product that contains Sodium Lauryl Sulphate. ( SLS is probably alright when used in cleansing replacements for soap but can thin or irritate the skin if it is left in contact with it).  

I am sure that if you follow all the advice your treatment team give you as far as skin care and diet for bowel issues you will find it OK.  I tried to drink as much water as I could (you will be nagged about this!) and also did a quite a bit  of walking to and from the hospital.  5 days a week for 5 weeks does get quite tiring but hopefully you will manage OK.

Good Luck

Hi Nina60, glad to hear that nasty chemo has finally finished. The only problem I had with the RT was in the groin area, I used aloe vera gel which I kept in the fridge. My goodness it was so soothing, but that only lasted a few days. Also With the RT I was told to use a moisturiser without any metals in it? I used Aveena. But do check with your  team they are pretty good usually with their recommendations. I am so pleased that your Oncologist took your past history into consideration regarding the brachy. The radiotherapists always checked my skin at each visit, so I'm sure your team will do the same as you say. Remember to ply them with lots of biscuits and sweeties my team were full of support .

Good luck,

take care,

LC

XX

Hi Nina60 I am another one who didn't get any skin problems at all from my 25 doses of radiotherapy.  I was advised to wash the area with a non scented soap, so I used and still do, Simple soap.  I was also advised and given Aqueuous to put on the area throughout treatment although I am now surprised to see from oldady that that brand isnt advised especially as we were treated at the same hospital!  I did use it and had no problems however! 

Hopefully you too will not have any skin problems and as you say the staff will check daily and give you any advice needed.  I hope all goes well for you and I will be thinking of you, mine was nearly 3 years ago now but still remember vividly how apprehensive I was about it all.  Unfortunately I hadn't found this forum at that point in my journey - it would have so useful to me if I had especially to be able to talk to people who had gone through the things I was.

Hugs, Lesley xx

Hi Nina60, I finished treatment around 4 weeks ago. I had surgery, chemo, 25 radiotherapy and 2 brachytherapy.  I felt a little anxious as each new phase started as although they explain it you never quite know what to expect.  I was expecting skin troubles but never had any through the radiotherapy, if anything I had a bit of dryness around the pelvic area but I more or less left it with an occasional bit of aveeno and it was ok. My skin is on the dry side normally anyway. GP can prescribe aveeno.  In my experience lots of water makes a huge difference to the whole process, I was drinking 2-3 litres a day (and still am).  I noticed that radiotherapy has a gradual tiring effect, diff to chemo which knocks you out straight after the drugs.  I hope that helps, I got through it ok with a bit of bowel and water works impact but it was all manageable.  I hope all goes well for you on Wednesday and take care. 

As others have said, I didn't have any problems with my skin either.  In fact the radiotherapists told me at the beginning that it wasn't likely to be a problem with endometrial cancer.  I used E45 cream occasionally. The thing that they were concerned about was bowel movement, but I didn't have any major issues.  I sailed through radiotherapy and even worked part time! Looking back, I wonder if the fatigue would have passed quicker if I hadn't worked, but at the time I need the sanity of work for my mental health.

Thank you for your replies. 

I'm fortunate (?) that I have regular therapy. I can offload to her and at the moment have 4 sessions via telephone every week. She's not a cancer therapist but that doesn't matter. I have two adopted young adults both with disabilities. Their reactions to everything just adds to my anxiety. 

It's tough on the children, even before you add in the fact that they have disabilities.  My 2 reacted very differently!  My therapy was 2 brilliant friends (one of whom had volunteered at the hospice for many years) who took me out for lunch or coffee when I was well enough. My family were great too.  We all find our different ways of coping, but some people's ways can make it harder for the patient.... Do your 'children' (at any age, they are still our children) get any support?  If not, it may be worth asking for help for them. Don't take any more on yourself than you have to - sometimes a professional is needed for your family as well as for yourself.  My MacMillan nurse made it clear that she could help the family too if we needed anything.  Look after yourself x

My youngest is extremely complicated. She's 23, came to us aged 4.5. By that time she was already very "damaged". She has a team around her, willing and able to support her but she rejects it. Only wants my help and full 100% attention which I cannot give her. If something comes up for me, I feel like I need to tell her, and then she reacts by finding another drama. It's her mental health and not something she's aware of. 

My eldest does her best to support me. She has a rare syndrome with all sorts of physical and emotional difficulties. She just needs to speak to me 3 or 4 times every day! 

Those sort of demands are very hard (i.e. impossible) for you to deal with at times during your treatment. I assume that you have spoken to her team?  Do you have any form of respite care available?  Harsh as it is to say this, you will only be able to help your daughter in the long term if you are given the space to get through this yourself. If you breakdown, you can't help her.  She will have to have some boundaries set.  You can't handle this on your own so, whether it is what your daughter wants or not, she is going to have to learn that you are entitled to your own time and space. If she finds her own drama, she has people to help her with it.  It's a time for tough love - she won't like it of course, but you need to love yourself too.

So much easier for me to say than for you to cope with of course!

Please let her team know that you are at breaking point and get help.  Let's face it, at some stage the chances are that you will die before her and she will have to cope then.  This is a short practice for that and may actually be good for her in the long run.

Please let us know how you get on x

First radiotherapy done~not without problems of course!

Arrived, went to the loo and started drinking my water. Called in before finished water, I'd only just started, so sent back to waiting area. Called again about 30 minutes later. Got sorted on table, scanned and bowels not empty enough. Off to loo~asked me to empty bowels but try not to pee. Yeah, very funny!!

Start over again drinking a bottle of water. Thankfully second time OK. Just emotionally exhausted now. 

Went to see eldest after as her flat close to hospital. Just felt she needed to physically see me. Definitely worth going.