Start of treatment journey....

Well first week done & it’s been a bit of a rollercoaster! 

I re-looked at Carole’s ( ) first update this morning and it’s very similar to how I felt past two days. So it helped reassure me it’s not just me. Completely drained & emotional. I started off well, 5fu pump didn’t bother me as much as thought to start as it’s silent….but I’m very glad it’s gone now! 

First day was a long day as there were delays getting the Mitomycin & 5fu. Unfortunately, I didn’t sleep much that day, as I was back & forth from toilet, presumably with all the saline pumped & continual chemo fluids.

Apart from lack of sleep, I felt ok second day. Third day started to feel little off, just felt bit drained in evening & brain fog, not being able to find the right words to reply to friends. By Thurs I wasn’t good, shaky, dizzy, dazed…by time I got back home I felt nauseous & was little bit sick – I didn’t feel like it but I sucked on some fresh ginger & had ginger tea with fresh slices which instantly helped. I then managed to eat which also helped rid the sicky feeling.  Dr has since given me nausea tablets but I haven’t had to use them, ginger worked for me. 

Radiation is delayed every day by 40-50 minutes which isn’t helpful when need a full bladder beforehand! Ladies overseeing me are all wonderful & understanding. 

Thurs was another bad night, the cancer niggling & hurting more after radiation (although I’ve had pain and niggles since Oct so it’s not new but made me aware of what’s to come), couldn’t get comfy in bed, by time drifting off at 4am my whole body got very itchy & started to get pain in back of throat. No proper sleep again! Dazed & drained most of today, crying…. Spoke with doctor & he said it’s all side effects of chemo, hopefully feel better over weekend & with some sleep. I could see the chemo had stopped early in day and I was surprised how clearer I felt later, especially by time pump was removed at 5pm.  Itching more-a-less gone but still have sore throat though.  Hopeful I’ll perk up now I feel I can function and control my emotions! Will try to keep up with meds for pain relief.  Feel a bit more hopeful next week will be a little less of a challenge.  Step at a time hey!  xx

  • Hi Em,

    Wow, you're doing GREAT! The first week is all nerves and getting the routine down, and with the wait you've had to put up with, no wonder you got a bit shaky. I'm glad you're done with the chemo for now, which will simplify your routine drastically. I'm glad you've figured out the nausea and eating bit! 

    You're off to a strong start. I'm amazed at you!



  • Hi Em, will be following your journey. I start the same treatment 15th May & very nervous about the whole thing. The side effects from the pump seem to be worse than the tablet form from what I'm reading.  I was due to take my granddaughter to watch Annie at the theatre we have been looking forward to it for ages but I will be 3 days into the pump & radiation and wondering if ill be able to take her now.

  • Great to hear that first week is over  , it can be a difficult one with this particular chemo regime. I hope you find yourself on a more even keel over the next couple of days. As it’s been said on here before try & stay ahead of your pain. I hope next week is a smoother ride for you. Keep us updated on how you’re doing. Thinking of you. 


  • Hello Em44

    Don't you worry about controlling your emotions!  The whole process is so foreign and new in the early days and that coupled with the adrenaline going because of the diagnosis doesn't help.  But treatment is underway, and that is always such a relief, it is one step closer to being rid of this disease.

    Hopefully next week will be better, and we are here if you need support - we have all been through it.

    Irene xx

  • Thank you so much       really appreciate the support.

    Just to update, 2nd week not gone as thought. I didn’t feel too bad on Saturday apart from fatigued, so I spent whole day trying to fight through the fatigue and tidy my son’s room etc.. especially as I’m aware I’m only going to get worse as we go on…well Sunday hit and my whole mouth and throat was very swollen and sore, I could not speak properly and I found it difficult even drinking! I was also getting very odd frequent dizzy spells, and my skin was still itchy.  

    All in all I felt I was having a reaction to the chemo.  Now on antihistamines & difflam spray for throat.  A lady told me to try manuka honey, which is something I was meaning to get anyway.  I bought organic & highest MGO just down local store and it was an instant relief.  I have used this 3 x a day, on top of the spray and paracetamol.  I am much better now, but still unable to speak clearly sometimes. 

    So I am dreading this happening again, especially with the soreness from radiation in week 5-6-7.  Part of me is really hoping it may have been the mitomycin rather than 5fu but that’s wishful thinking out of desperation! There’s a high turn over of cells in the mouth so this is why this happens with the chemo and sore mouth can last for a few weeks. 

    Advice for those who may get this, have some general mouthwash (dentist can prescribed some too), make sure keep up with gentle brushing/hygiene, try manuka honey (mine was MGO 500), have some ice lollies / ice cubes and foods that will be soft and soothing! I had soup (but not hot), chilled melon which was nice to suck on and easy to chew, yoghurt.  **Any other advice would be very much appreciated as it has been hard - any ways I can prevent this?**

    Since I had the itchy skin, I also have an area near perineum which has lumps and itchy.  I’ve been having salt water / baking soda baths and given some flamigel already.  I did not expect this so early on.  The radiotherapy nurses are like angles guiding and helping along the way.  I can feel it’s a little sore near anus too so trying to remember to use water wipes rather than paper from now on.

    I’m really hoping next week will be a little easier, feeling somewhat deflated to be experiencing what I have so early on but trying to keep positive and find moments to laugh in-between! Really appreciating these weekend breaks from hospital…apart from general washing, cleaning etc.. I will just be relaxing as much as poss as I think over-exerting myself last weekend didn’t help! I hope you're all ok Tulip xx

  • Hi Janita, I completely understand how you feel.  I was due to start treatment 10th April, but a dental matter delayed it. It’s the waiting, trying to prepare yourself part which is also difficult.  Admittedly by time Monday came I felt an odd sense of excitement as just wanted it to start!

    I have a son who is 11, so I have found it extremely hard & stressful trying to come up with a loose plan for the next couple of months.  It’s the whole ‘unknown’ that is tricky as we are all starting off from different points and all experience treatment differently.  So, I opted for caution as need others can help along the way.  I pretty much expected the chemo week to be a bit rough, then two weeks follow seem ok.ish, but from week 4 & especially 5 the radiation kicks in & round of chemo on top too. 

    This second week I did not expect to suffer extremely sore and swollen mouth / throat / tongue which has been very difficult.  So, this is where we are all different and react differently.  My son came home mid-week.

    The first week is quite a lot to take in with getting into the routine, you are given a print out of radiation times, which chemo fit into.  There’s not only those main sessions but blood tests and reviews every week, picc line care etc.. and they try to fit them in close proximity to each other.  Personally, I’m glad I didn’t make any other plans for that week.  Also, once treatment begins you’ll have to be somewhat careful not to become unwell with a lowered immunity.  My oncologist said, the worst thing that can happen now is treatment is interrupted as the efficiency of it is impacted...making it less successful. So, i’m mindful of that & to shield myself as much as poss during treatment.     

    I am very grateful I found this group who are wonderful and supportive throughout it all.  Family and friends can try to help and sympathise but unless you experience things like this they really don’t understand. I hope that helps a little x

  • Oh Em, you are really going through it with side effects.  You are already giving some brilliant advice if others should get the same, I can't add much except to say I (to this day) use baby lotion on soft paper to wipe.  I bought some extremely expensive lotion initially but then found baby lotion worked just as well and was very soothing for the piles which I developed and still have.

    Please don't try and do too much at the weekends either; your body is trying to recover from the onslaught of treatment.  My Mum used to say if it is your own house it is clean dirt (you know where it has come from!)

    Sending hugs

    Irene xx

  • Aw thinking of you x x

  • Oh, the mouth sores! And you just having had a bunch of big dental work must just make it so much worse!

    When I developed sores, they gave me a compounded medicine called Magic Mouthwash which is thick and gross but really did help numb the soreness. It doesn't work for long so you have to keep using it, but it does help. 

    Try a peri bottle for cleaning after bowel movements. I was not able to touch the skin in my nether regions at all, not even with gentle baby wipes. Husband installed a bidet attachment which was and is a total game changer. 

    I'm glad you realize that tidying up and other normal life things are off the table for now. Weekends are not for catching up on chores, they are entirlely for rest and recovery.

    You're doing so well, Em. I hope you realize that.


  • Hi Em

    my piles got very sore and the nurse gave me special steroid ointment for them which eased them straight away and at least took that worry away! 

    So sorry to hear about the sore mouth - I was so lucky not to get that aspect!

    Enjoy your weekend off!

    Carole x