Halfway through treatment

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Hi everyone,

I’ve not been on here for a few weeks so I thought I would have a catch-up 

I have completed 15 days of treatment of (Capecitabine) chemo/radiotherapy with another 10 days to go. I seem to be coping quite well
with the treatment except for a couple of unexplained bruises and a bit of a sore mouth. I am beginning to feel more tired than usual too but I haven’t stopped working.

I  had a review today and my white  blood cells are a little low but not too much to worry about. I have been told that some side effects come on after completing treatment so I’m not getting too comfortable. 

Sending hugs to you all Upside down

Mags

  • Well done  

    You have done incredibly well getting to this point and by the sound of it doing well despite the treatment and all it’s side effects .

    Keep pressing on and will celebrate with you when you are completely finished .

    Take care ,

    Court 

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  • Thanks Court

    i consider myself really fortunate at the moment as I’ve read about some of the side effects others have experienced. 

    Mags x

  • It’s great that you are coping with it . That’s all anyone can hope for .

    Heading in the right direction for sure .

    Court 

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    Helpline Number 0808 808 0000

  • Well done Mags! 


    Getting passed half way is fabulous, getting onto the last week is just wonderful and you are nearly there.  I finished mine on the 8th Sept and fair skipped out of the place!  I've been tired, but not too bad, just kept on doing what I was told re moisturizing and drinking lots of water.I had one day of RT cysitis, which went away with one sachet of over the counter stuff and cranberry juice.


    So now, 2 weeks after the last zap, I am pretty good, have had 4 days away by the coast this week, where I did a lot of walking, paddling, drank some beer and ate loads of veg without the fear of creating that RT enemy of gas :)  I am tired, but just nap when I have to. My feet started to swell, but walking and paddling in the sea helped with that.   I am continuing with the moisturizing routine and the creams I've been given for RT burn prevention - plus I have some local anaesthetic stuff that I can use if poos get painful. BMs have been a bit more urgent at times, but I can live with that and the radiotherapists were really good at explaining all the things that might happen, so no surprise with those changes.  Due to start on the girlie dilators next.


    Sitting in warm water has not been essential for me, but it does help with a bit of soreness I have, so I am using a sitz bath (have to try not to fall asleep while I'm sitting on it) :) 

    I know you will be counting down the days, you will be glad not to have to sit in that RT waiting room or travel for the treatment.  You will also feel better when you don't have to take the cape tablets.

    Just to make you laugh, there was a delay of at least 45 mins for every one of my treatments - not so easy when you are holding a bladder full.  One day, after a long wait, I was called in, got lined up, first initial scan complete - and the s*dd*ng fire alarm went off and the building had to be evacuated - just as they were about to do my zap.   Of course I had to get dressed and get out of the building, but I was desperate for a wee!    Had to wait for 35 mins outside before we could go back in the building, so my eyes were bulging and I was dancing a spectacular jig.  (Other departments/buildings were evacuated too, so no chance of escaping to another toilet).    It could only happen to me. 

    Keep going  - you are nearly there.  I'll be celebrating with you when you complete day 25.  Stay positive!

    I have my chemo assessment on Monday, 18 weeks of that next, starting in Oct.  Will cross it when I get there.  For now I am nursing a flu jab in one arm and a covid jab in the other...  can still lift a pint glass! 

  • Hi Arsey

    i have finally come back on to reply. Been away for a few days. 
    thank you for your advice, I have taken it on board although I’ve not sat in the bath yet. My feet get cold so I’ve got a hot water bottle for that and I’ve lost my appetite a bit but it’s early days. I’m hoping I don’t get too many side effects. 

    So you are going to have chemo separate to RT? I had mine both together for 25 days over 5 weeks. 

    I thought about you as on my last treatment the alarms went off due to testing. I wasn’t aware of it so I’m glad it didn’t make me jump as I could have found myself being zapped in the wrong place. Joy
    When you recounted your experience though it did make me laugh although I know you weren’t laughing at the time. 

    have you started your chemo yet and what are you on?  Good luck with your chemo and let me know how you get on. 

    Chat soon

    Mags 

  • Hi Mags. 

    Lovely to hear from you and know how you are getting on.  I'm glad I made you laugh with my tale of the alarm going off - that was my plan.  I really was laughing when it happened - what else can you do?   Even the radioterrorists were laughing with me (in a nice way) saying they couldn't believe my bad luck.  They absolutely looked after me and my bladder when we got back indoors.  Yep, like you - terrified that a false move would mess things up, but those machines are amazing and alarmd to turn off if you move.

    I was just thinking that if there really was a fire and those 3 machines were taken out, it would be a massive issue as they treat not only people in Shropshire, but those people in a massive area of  mid Wales - Swansea is the next nearest RT unit, or Hereford.  Really massive distances to travel.


    So, my treatment plan is the 25 days of chemo with RT - then a three week break (although it is now a 5 week break) with 18 weeks of Capox chemo, starting on the 17th.(now a 20 week plan).    They are aiming to shrink my tumour before they operate. OPRA treatment plan.   I guess that as it is rectal, it gives me a better chance re removal margins if 'Rasputin' shrinks.   I won't know about that until scans in Feb.   I;ve had delays at every step, so the target of starting treatment within 2 months of suspecting cancer, for me was 4 months and I'm still getting delays.  Not good.To be fair cancer was suspected even earlier, so my delays have been longer.


    So after finishing CRT, I've been pretty good.  I have one leg/foot that has swollen (rang help line) so try and keep walking and elevate leg when I can.  As the weeks pass, I feel so much better for not being on the chemo. I know I'm going to be back on the Cape though, along with the scary Ox.  I'm still very tired at times.


    Have started dilating -  tried the 'natural' approach and that hurt, so start on dilation Mags, they advise week 3 after treatment stops to start it.  


    I'm thinking if RT scars tissues as I think it can, then bulk up everything you can, so I'm eating lots of fibre to try and stretch my bowel.  Have had some sore poos, but RT sent me away with some great creams and some numbing stuff and I'm still using that.  Still using the RT creams, wearing very lose clothing, including men's boxers.  If you find things getting sore after treatment (as it is still working) then do sit in warm water.

    Remember the help line is there for you. 

    Enjoy the break after your CRT.  What is next for you?

    Zoe.

  • Hello both 

    It's been really helpful to read about your radiotherapy experiences, I've got an appointment with the oncologist on Monday where I guess I'll find out more about when my treatment will start and stuff like that. Plan for me is radiotherapy to shrink the tumour then surgery to remove it. As far as I remember anyway! 

  • Squashable -  just get in touch if you need to. 

    I was shit scared about the CRT stuff, but it was actually OK. bit draining, but OK and met some fab people in the RT waiting room.   Didn't have the side effects that I was expecting.  The RT team were fab and you will have weekly reviews where you can talk to the RT team, who know a lot and will give you time to chat plus meds to help you out.    Glad you are getting urgent attention, took me months to get to where you are.   Have  a prepared  list of things to ask your oncologist.  I've found my oncologist very clinical and not seeing me as a person, so keep that in mind.  

    You could be on 5 day RT or 25 day RT with oral chemo.   The RT works for months after the last treatment.  I'm still pooping out tumour. 

    On the positives, we still have options. 

    Zoe

  • Hi Squashable

    I have just completed a 5 day x 5 week chemoradiation. My plan was and still is the CRT and an operation possibly January. Side effects are minimal at the moment except sometimes I can’t get off the loo. A bit tired at times too  

    Shrinking the tumour before surgery seems to be a plan many oncologists go for. The time appeared to go quickly for RT and was in and out of the hospital 30 to 45 mins and as Zoe said there’s a weekly review or if you feel the need you can talk to any of the team in between. 

    I can’t say I’m looking forward to the surgery but it is what it is. 
    I’ll be thinking of you tomorrow, let us know how you get on 

    Mags x

    The one thing that stands out in all the hospitals I’ve attended is the staff. Wherever  you go they are just amazing people. Blush 

  • Hi Zoe

    you still make me laugh Joy

    I’m finding it hard to think that there are only 3 machines for the very large area they have to treat. No wonder your appointments and treatment kept getting pushed back. 
    At the moment I am fortunate as I don’t have to have any more chemo unless my oncologist tells me I need more. Can I ask why you will be having another 20 weeks of Capox chemo? 

    I haven’t thought about the scarring and the bulking out but I suppose I should, sooner rather than later. 
    as I said to Squashable I am spending a lot of time on the toilet that at one time.
    Do you still bleed? I have been today so I am going to phone my support nurse even though I think it’s normal after all the zapping. 

    Is your leg still swollen? When I was on immunotherapy 2018 to 2020 my legs swelled so much and they went bright red. It was quite painful at the time so I hope yours aren’t so painful. 
    what’s the name of the numbing cream you have, I may be able to get some on prescription, I was given a course of suppositories which were helpful so I may ask for more of them. 

    sorry, I seem to be asking you loads of questions today. 

    I plan to go on holiday in a couple of weeks and then I guess it’s planning Christmas 

    take care and chat soon

    Mags X