Well first week done & it’s been a bit of a rollercoaster!
I re-looked at Carole’s (Cranford ) 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
Great to hear that first week is over Em44 , 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.
Nicola
Thank you so much ridetbred Nikki65 Irene75359 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 
xx
