Update and wealth of your experiences please

Hi Nikki J good to hear you are starting treatment sooner than you thought. If it is Capcitabine you will be taking daily it is unlikely that you will lose your hair although it might thin a little. Mine was dry and lacked condition prior to treatment. I wear mine short but did have it cut into an easy to manage pixie style before treatment started. As for the weight I am over weight 12st 8lb and 5ft 4" Damn Covid!!!!!! However was able to maintain this weight and was encouraged to do so. Hope that helps in some small way. You will feel so much better once treatment starts and it was nowhere near as bad as I had imagined! Take care sending positive healthy vibes to you! xx

Hello Nikki, I am glad you have a start date which is not that far away at all. On my first day of treatment I had to go and have the first dose of intravenous chemotherapy and the rest of the six weeks were daily tablets taken ONLY on days of actual radiotherapy. I was mistakenly told to take these tablets every day and after reading on here that people were having a break at the weekends I questioned it and they were cross with the pharmacy for putting the wrong information on the prescription. As from now get your skin down there in tip top condition with agreeable moisturiser. I don’t know what you plan to use during treatment as everyone is different. I used a gel called StrataXRT all through treatment which can also be left on during treatment as it has a permeable film but other creams you have to remove prior to the treatment. This I purchased online and the drawback is it’s expensive. Are you planning on working up until you are unable to? I had a half hour journey to the hospital and then you had to drink a cup of water and wait your turn which only takes about 10-15 mins plus if you have your bloods tested and weight measured and then home. It’s pretty draining but I was lucky my husband took me there and back. After a couple of weeks I got what they call radiotherapy cystitis which was irritating so drank lots of water and took cranberry tablets. My oncologist did not think cranberry was any more effective than drinking loads but there you go. My appetite went somewhere but I forced myself to eat healthy and refrained from sugar as it’s not good for the bladder. Around the fourth/fifth week I did start to get some reactions from the radiotherapy and bought some soft cotton ladies shorts style knickers one size up so they didn’t rub and some harem trousers which were loose and so comfortable. I hope you have got yourself a sitz bath which I found the most beneficial piece of equipment during treatment. I was internally sore and I used this to wee and open bowels in water. Such a godsend and don’t allow yourself to become constipated. I was given movicol as I was put on morphine at the later stages and that constipates and dehydrates. I was up every hour as it made me urinate and then I would be thirsty so a viscous circle. Side effects are as different as we are and some experienced more discomfort than others but just come on here and you will find someone has been or going through exactly what you are going through. My medical team were really supportive and they were always available to call if I had any concerns, make your team your best friends. I can’t say it was easy as it wasn’t for me but I am 18months post treatment and live a good life. A few hiccups but I don’t think anyone comes out of radiotherapy every weekday for six weeks and completely get back to normal but I am sure someone here will prove me wrong. This group has been my saviour and got some fantastic tips and reassurance so keep in touch and ask anything. When you start this will be a journey that goes up and down and the best treatment to have for this horrible cancer. Julie

You have had some great advice already from MiniM66 and Jaycee12 which I can't add to.  Jaycee's experience more or less mirrors mine in most respects.  However, at the Marsden, at my radiotherapy planning appointment I was given a bottle with with my name on and drank a specified amount of water, I was then scanned to ensure this was sufficient for optimum protection of my bladder.  I drank this an hour before my radiotherapy appointments which meant my bladder was already full and my radiotherapy appointments literally took about 20 minutes.  I don't know which hospital you are at, I was at the Royal Marsden in Sutton and although it is a paying car park there is special dispensation for those having regular treatment.

Very best of luck, please come back and let us know how you are.

Irene xx

Hi Nikki, 

I'm glad you're getting in (and therefore out) sooner and are sailing in with such a positive attitude! Walking daily and still working, so good for your wellbeing.

I had chemo infusion, and my hair thinned to the point that it didn't look bad, but I was depressed at seeing it on my pillow and in the shower so just got a buzz cut. To my shock, it suits me! And anyone who doesn't like seeing an 63 year old oddball with a cropped purple buzz can just keep moving. (Actually, it's blue at the moment. Got to keep the granddaughter guessing what color Grammy's hair will be.) I'm 9 months past treatment now and my hair seems to be growing in more thickly, but I'm loving the ease of having no hair after being a long-hair girl my whole life, so I'm gonna rock the buzz for a while longer.

I lost weight during and after treatment, but that's not a given, I think it just depends on how hard it is on you. I'd focus more on eating super healthy and getting yourself in the best possible condition to face treatment. It can only do you good.

I did put a bit back on when I moved further out from the treatments but have managed to keep most of it off which pleases me.

We've all got your back as you face this!

Suz

Hi NikJ18 ,

That’s great to hear you have a start date & that it’s sooner than first expected. 

I had the same chemo regime as you’re having, mitomycin infusion day 1 of treatment then capecitabine tablets twice a day each day of treatment (Monday-Friday). I think with this chemo regime it’s very rare for you to lose all of your hair, your oncologist will say it’s possible as however small the chance it could happen. My hair went a little thinner, not that anyone other than myself noticed, after treatment had finished it was also a bit dry & frazzled so I had a couple of good cuts to get rid of the dry ends. If you’ve been toying with the idea of having it cut anyway I’d go for it, it’ll be less hassle to look after during treatment & it’ll grow back afterwards in better condition. 

Regarding weight loss, I like many had a bit of a knee jerk reaction to my diagnosis & started eating super healthy, no refined carbs, no sugar etc., & I lost 3 stone in a matter of a couple of months (I had it to lose!) I now think some of that was due to the stress & anxiety surrounding the whole situation. I would try & stick to a healthy diet although there will be times that you just need a little bit of what you fancy & that’s ok too.

Please don’t hesitate if you have anymore questions, just ask away. Wishing you all the very best of luck for the 19th.

Nicola 

Julie

Thank you  yes I plan to work until I can’t I am lucky enough to be able to do most of my job from home… 

Taken in all your great advice and will defo be purchasing some baggy trousers and size bigger knickers as suggested good call … 

I currently soak in my bath tub and haven’t had to pass motions in water but seriously considering one of those sitz baths that fit on the toilet…

so glad I found this group the advice and support is invaluable… 

Nikki J 

Minim66

thank you for your kind words my weight gain is also down to COVID lockdowns I believe well that’s what I’m sticking with … so good to hear your opinion and gives me good vibes and hope for the same. 

Positive vibes back to you xx 

Thank you decision made going to get hair cut and continue on trying to eat healthy and shift a bit more weight… 

thank you for kind words and taking time to respond 

Nikki J 

Suz

Again thank you love your messages and always make me smile… I am definitely going to rock a new edgy short haircut shortly … speak soon 

Irene 

thanks for you response I am also under the Sutton Marsden… I have been given free parking now as had more than 3  appointments… I have a new swanky Marsden water bottle with my name on and also told to drink before my sessions… 

I have been told actually radiation session only 10 minutes it’s the going to toilet and then drinking water.. 

will keep in touch thanks for support 

Nikki J xx