Struggling, can’t stop crying. Feel like no light at the end of the tunnel!

I didn't take to my bed at all. The first few days I was tired and had an afternoon snooze. I had my chemo on the Friday and had an energy drop on the following Wednesday, which I put down to the steroids ending.

On the Thursday, I picked up and after the weekend I felt pretty much back to normal for the next two weeks - just a bit more tired than normal.

But I walked my dogs through the treatment. I think it's important to keep moving and get some fresh air if you can.

If you feel like you are getting constipation from the steroids, I'd recommend seeing it off with something like Laxido - it takes a couple of days to kick in but does sort things out.

Good luck, though and enjoy your break - it's important to do good things too. 

Thank you for your reply. I’m pleased it was manageable for you! And thanks for the advice!

I definitely don’t want to be in bed, I’m usually an active person and like being out and about and with people. Though I may just have to accept a rest and being alone for a week or so every 3 weeks.

Im a little apprehensive about going away abroad in case I’m poorly but I’ve a week off treatment before I start EC, I have insurance and I already had to cancel 2 prebooked holidays since my diagnosis so I wanted to treat myself! Fingers crossed I don’t regret it! X

Hi Nic, just wondered how you are getting on after the EC and finishing the steroids?

I had my first dose yesterday and have been really tired and fatigued. I slept at the hospital which I have never done before then fell asleep on the sofa after tea too which is not like me. Wondering how long I can expect to feel poorly and when it will get worse? And if I might have a normal ish week before I go again - I go 3 weekly.

any info/advice would be greatly received!

thanks

keely x

Hi there. Good to hear from.you.

I'm now 14 days post my 1st dose and doing well and cranking up for my 2nd dose next week.

I can't lie, after the relative manageability of the first couple of days whilst on steroids - tired but still able to do a few bits - I did find the next week a struggle.

It was mainly the nausea; I tried 2 different types of anti-sickness but didn't get much respite. So I just has to accept it was best to take to my bed with fluids and my new best friends crystallised ginger and plain biscuits. It sounds counter intuitive, but actually eating and nibbling helped the nausea. 

But, in the whole scheme of things, I'm now doing well, no sickness and the tiredness I'd manageable with early nights. And I know what to expect next time and that I just need to.go with what my body tells me and keep speaking to my oncology team.

All the best and please keep in touch as to how you are doing x

Nice to hear from you! And thanks for your reply.

i had my first one yesterday and so far just feel very tired but I’m expecting worse when the steroids stop.

What anti sickness did you get? They gave me an injection of one and I have metaclopramide and Apprepitant.

my pembro rash returned and so I’m back on steroid cream and today my left side is flushed but I’ve no temperature or anything so will monitor it next couple of days. Don’t like keep calling the 24 hour line as not an emergency and it’s not itchy or bothering me.

glad you feel better now and have a week to enjoy yourself before it all starts again!

I’ve got an appointment next Friday which will be 9 days post infusion so hoping I can get there! 

keely xx

I started on metaclopramide, then moved to cyclizine (or something like that). They are going to try me on a different one next time. 

Good plan to keep an eye the rash. Think human nature is that we don't like to be a bother, but my team keep saying it's never a bother to contact them if I need them, even just for reassurance.

Take care of yourself and I hope you ard able to get to your appointment. I've not felt confident to drive yet as still quite dizzy, so have been using and abusing my lovely friends for lifts! xx

Thanks again for replying it means a lot!

yeah the rash is getting better again wit the steroid cream they prescribed last time but bit odd the left side of my cheek is a bit flushed. Unless it’s a little sunburn from the short walk I had but I don’t remember the sun being on that side.

i try to avoid calling them if I can help it or they always want me to go in then end up keeping me hours! Or keeping me in for observation! Though not actually observing me. So it puts me off if it’s something minor ha x

Please remember when you go on holiday that your immunity will be low.  Ask if you can take vitamin d3 tablets for immunity.  I take 4000 iu with vitamin k2 every day.  Don't be In crowds if you can help it! xxx

• I didn't have any side effects with EC except a bit of tiredness. xxx

Yeah I’m on vitamin d daily already. Paid for 2 seats separate on the front of the plane and wore masks. Avoided crowds and mostly outdoors x