You’re not alone getting fed up with it all. I think we all get that way at times on this journey.
I started chemo with a very positive attitude, had a bit of a slump last week - considered stopping. Just so fed up of feeling useless and generally crappy. But I do think some of that is the treatment itself - days 4&5 I have had an emotional dip every week. The alternative is so much worse though - that’s what’s kept me going.
I even struggled with the basic self care last week. Planning things to look forward to has helped and remembering that I’m closer to the end of this than I have been also helped me shift thinking. That and having a good cry and telling my nearest and dearest how I was feeling too.
Morning, Ailsa @molly.m , sorry to hear you have been suffering so badly, no wonder you have felt down. I think we all get little obsessions every now and again, mine has been the next round of chemo, Paclitaxel, I have had my knickers truely in a twist, as I am so allergic to so many things, was convinced I would be dead in the first couple of minutes!! I did a patch test for the castor oil, which is the main ingredient people seem to be allergic to, that was negative, so it helped me a bit. I have written to my Oncologist, over 2 weeks ago, asking to be swapped to the safer alternative, but no reply… Just thought hearing somone else’s meltdown, may help, as you are not alone with racing thoughts. I understand the sickness thing and the mind being able to make you sick, I am the same and I also manage to faint if I get too scared thinking about things!! That one is particularly unhelpful! Anyway, sending you a big hug, you will get through all these awful times and have so many good times ahead of you. Jane x
Hi lovelies, sorry no posts for a while, during my week 1s I feel so queasy that I can’t really face screentime much and then in week 2 I have trouble catching up!
I’m having my fourth fortnightly EC today and I’m still cold capping. I’ve kept all the hair on my head so far. I have Filgrastim injections days 2-8.
For sessions 5-8 I switch from EC to fortnightly Paclitaxel and I’m worried about having to cope with new side effects but hopefully it won’t be too bad.
After today I’m halfway through chemo - wooooooop!!
@frunca - good luck on your 4th EC, I’m also doing fortnightly EC - have my 4th an last this coming Friday - despite cold capping I’ve lost about 50% of my hair so you have had an amazing result! @buggeringon - yes, feeling a bit brighter today - had an online team meeting and then caught up after online with my very supportive boss and another colleague - I won’t be going back to work anytime soon and it’s nice not to be under pressure but supported to take time off to recover. I’m just off to the hospital to collect some gelclair oral gel which I hope will coat my ulcers and make eating more comfortable, then seeing the oncolgist this afternoon
Hi everyone, just catching up. This has been my worst week by a mile. Went to do blood today and I found it hard to be upbeat, my inflammation is still bad. Then I thought to myself (in the middle of the night obvs) dexamethasone is for inflammation and the nurses said I should reduce it last Wednesday bc of insomnia, so of course I’m inflamed. I’m quite angry actually bc I find some of their advice random, this has really upset me though. I remember last week when they said cut it thinking going from 4-1 tablets was very severe so I actually cut it from 4-2 thinking all it would do would enable me to sleep. I’ve suffered so much because I needed the bloody steroids to counter the inflammation from keytruda.
I mentioned it at bloods today and my nurse said “oh yes that makes sense”
I’m not making any further changes from now on without getting the opinion of the onco (he’s there every Tuesday when I am)
I feel as though all this pain this week was unnecessary.
That’s my moan over. @molly.m so sorry you’ve had a rough time too I kind of shared the above to just let you know it’s ok to be down xxx
On a much brighter note I have ordered a wig! Had fun with my daughter in the shop and I go back for my fitting in 2 weeks. You still can’t tell that I’m shedding but it’s decision time to get the use out of it.
Struggling to get used to spending whole days on sofa!
Rachel xxx
Also my worst week for symptoms - I saw the oncologist today and he thinks I may have oral thrush and prescribed an antibiotic, treatment for heartburn and I’ve started the gelclair which helped me eat dinner.
MY TUMOUR HAS SHRUNK BY 20%!!!
Want to shout it from the rooftops! That’s from the MRI after 2 cycles of EC!
It’s so great to hear about everyone’s shrinkages - makes it all worthwhile!
I had my pre-cycle 3 bloods this morning and their machine was working this time is I was told by 9:10 all ok for Wednesday. My blood pressure is a little high and usually, if anything, it’s a little low so I’ve been told to keep an eye on in.
The Oncologist couldn’t find/feel my tumour today which is brilliant news. I already have an ultrasound booked for next week but he’s also requested a contrast mammogram for 3 weeks time, prior to cycle 4 to confirm how well it’s going and a cardio MRI for 6 weeks time, prior to cycle 5.
I’ve been lucky during cycle 2, no major issues and if anything it was easier than cycle 1, let’s hope that continues.
I really hope those of you struggling get some respite/improvements soon.
I also mentioned to the Oncologist that my eyes keep watering so he recommended lubricating eye drops - Systane. I went to Boots and there are so many Systane options and also Hycosan. Does anyone have any experience of lubricating eye drops, specifically ones that are OK with soft contact lenses?
