Symptoms so soon!

Hi Jaycee12,

I had radiation cystitis week 2 of my treatment & also felt something ‘going on’ at my tumour site pretty early on but I wondered if this was because I’d already had surgery & that the site where my tumour had been removed was a little more sensitive as it was only around 8 weeks prior to my treatment.

It wasn’t terribly helpful of the radiographer saying about the skin reaction being inevitable regardless of creams etc., I think we all go into this treatment well aware of this, I always found my radiotherapy team very sympathetic & they always provided alternative creams as my skin reaction worsened & always asked how I was doing, was there anything I needed etc., maybe I was just lucky! These creams & dressings if needed later on must do something else they wouldn’t be prescribed surely! Different hospitals have slightly different approaches & I was prescribed Movicol all the way through so as not to make me go more but to soften what was already there but we can only go by what’s advised by our treating team can’t we? 

I hope your tummy soon settles & next weeks treatment goes well.

Nicola 

Thank you Nicola I am finding different staff mean well but advice or opinions are slightly varied. I am still uncomfortable in the tummy area but it is less painful than it was Wednesday  Thursday and Friday. To be honest I started to panic as to how I was going to cope with the symptoms if this stomach discomfort is bringing me down. I cannot place my hand on my upper stomach without feeling tender. The nurse did mention the cystitis side effect which at the moment, thank goodness, I haven’t experienced.   I am not taking pain killers as I don’t want to irritate it more. I am just hoping this isn’t constant before all the other stuff starts. Sorry I am feeling a bit low which they said would happen.  

Hi Jaycee12  sorry to hear you're not feeling too great. I only had to take the anti-nausea tablets every day for the first week as the effects of the  Mitomycin were worse than the effects of the Capecitabine tablets. After that I only needed them occasionally so if your stomach is related to them this may ease as the Mitomycin leaves your body. Like Nikki65 I'm surprised to hear your radiographer say creams won't make a difference to the skin reaction. My aromatherapist friend made me a special gel which I applied externally every day after the radiotherapy. My skin would be red, I would apply the gel when I got home and it had an immediate cooling effect and the skin colour would go lighter red.  My skin reaction wasn't too bad at all, it didn't  peel off, it flaked slightly in the creases of the groin and that was it. My pubic hair fell out but I wasn't bothered about that. You're bound to feel down but you're through week one-you've already got one fifth of the treatment done. The treatment will make you feel tired towards the end so make sure you get plenty of rest. Bev x

Thank you for your comments Bev. I may just look up for a local aromatherapist. I did tell the oncologist nurse what the radio therapist said but of course she didn’t comment on that. She did say as an when a problem arises they will treat it as appropriate. If it’s still sore on Monday I will see if they can help. 

Hi Jaycee12 I would definitely ask the oncological nurse for advice. If you do decide to look up an aromatherapist, my special gel was made of alcohol free aloe vera gel, blue chamomile oil and high altitude lavender oil. It was miraculous stuff. Just don't use any creams immediately before your radiotherapy sessions. Bev x

Hi Bev thank you for your comments. I have been trying to find an aromatherapist in my area and seem to only come across those who are involved in massage which is not what I need at the moment.  I also looked to see if I could see if it was possible to order online a recipe for this purpose. I will keep looking and hopefully find someone fingers crossed.

Hi Jaycee12

My skin reaction startead on day 3 of my treatment, and I had been told I wouldn't feel it until week 3! I was very worried, and the following week on examination, I was told my skin had started to "break down" on only my 7th day of treatment, 21 still to go.  But the creams helped.  Flammigel where the skin was intact, and flaminel tort of QV cream on the small area where the skin had worn away.  

By the end of my treatment, my skin was no worse, so my advice would be, smother yourself in the flammigel all day every day where the skin is intact, and if worn off, get some other cream from your nurse.  one exception, apparently the skin has to be dry when you receive your treatment, otherwise it speeds up the bad skin reaction.  I got some muslin cloths from amazon to pat myself dry with rather than a towel, and I used to take this to treatment with me, and wipe off any cream, and pat the skin dry in the changing cubicle immediately before I had treatment..  

And, even after the side effects started on day 3, days 5, 6, 7,8, weren't bad at all again.  I usually found Friday night and Saturday were the worst, and the rest of the time, the side effects mostly weren't too bad, until the last week, and even then, and even after treatment finished, it wasn't as bad as I had imagined it would be.  Best of luck xx

Thank you so much Beyond terrified for the advice. My treatment today was nearly an hour late and I was thinking about how do people cope if they had sore bums to sit on!  I am going to slap it on apart from prior to the radiotherapy. 

That's a good point, I used a ring cushion for travelling back and forth, I bought that on Amazon too, and once in the hospital, I just stood up.  Mostly my treatments were on time, but there was one occasion i waited more than an hr.  if#

iI had to sit down, I positioned myself on my right side in a chair, resting my weigh on my right hip..  The radiographer said some patients just lean against the wall towards the end of treatment,   It probably helps to drink your water before you leave the house, so you spend less time in hospital, but I was too far away to do that, is that an option for you?

Hi beyond terrified, At the hospital where I attend you have to go in half an hour before your appointment and wait until they tell you to start drinking and after 30 minutes they hopefully call you in. We have to leave n hour before to be able to get there and then parking and then walking to the hospital so it’s roughly two and a half hours to go and then home if there are no delays. I had to see the doctor today as I have such a stomach ache so we left at 11.40 and got back at 3.30! I’m shattered