About to start chemo and terrified

[Gogobabyshark]

I am about to start on FLOT chemo this week and I’m terrified. Obviously they have to tell you about all the side effects and risks but that makes it more terrifying. My normal world has completely disappeared

Is there a Macmillan or maggies centre you could pop in to ? Also have you made contact with your cns team? Lots of support to be had from all of them.

Cancer is frightening as is the treatment for it. I’d say it’s completely normal to feel terrified.

make sure you have real life support - medical professional to ask all the right wuestions, maybe someone with you to be an extra set of ears. Write a diary - your fears, questions, answers then you don’t have to have these swirling round your head. A close friend you can be truthful with about your fears. Support from any of the charities related to your diagnosis.

its frightening and lonely - I’m sorry you are facing this. Sending you much love and strength x

Keep notebook of all your concerns and show this to your care team.

@Gogobabyshark sending you a handhold. I’m also on chemo ( a different drug to you ) and my normal world has vanished too. The medics need to go through all the side effects, but hopefully you won’t experience them all.

If you have a Maggies centre near by, I would recommend dropping in when you have a moment. They can offer so much in terms of practical, emotional and physical support and all completely free of charge.

Definitely take all the anti sickness which is offered to you. Stock up on a few laxatives/ immodium ( the bowels can take a bit of a hit either way!)
Drink plenty, have a few of your favourite foods/ snacks in and just be kind to yourself.

Hopefully you have good support IRL?

All the best for this week 🌼

@Gogobabyshark That's good advice from @minmooch and @Enigma53

Please contact a Macmillan nurse, they are there to help.
Whilst you are there, please don't be reluctant to ask questions.

On your arrival at the Chemo Ward you may like to say to the Staff Nurse something like, ‘This is my first time, I’m in a bit of a state!’.

They are all there to help you.

Acres and acres of research has been done by the NHS (and across the World). It clearly shows that the more a patient knows about the treatment and what’s going on, the better the outcome.

It may well be that because it's your first Chemo Session 'the system' is already set up and expecting you.
On my first session a) an Oncology nurse had already rung me and told me what to expect, b) a Macmillan nurse sought me out and explained various things, c) a Dietician nurse came to see me and gave advice about my diet, d) Another nurse asked me about my domestic arrangements and how I would manage between Chemo Sessions and travel etc.

Rather strange really, for years I’d dreamt about being chased by nurses, sadly under rather different circumstances.

Hope things go well for you – Dan.

Sorry to hear that @Gogobabyshark Sending a big hug.

I was also really terrified before mine started, so scared they expected me to pull out but I did get to the end. What I found helped was initially thinking of it as just one to see how it is and knowing I could stop at any time. And a symptoms diary by day helped plan how next one would be. There are lots of meds for side effects though it takes a bit to find the right balance and I was better on less side effects meds as you can get side effects from those too but people vary. No issue with sickness when I used ondasetron. It's worth a dental visit if not done one already, has to be private here but if you explain, mine were very good and gave me a prescription for extra fluoride toothpaste which meant teeth survived well. There's also a 24/7 chemo line which it's fine to use for any medical worries. Digital thermometer for temp and call asap if out of range, think it was over 38C but ask them. I took twice a day. Immediately notifying them they said reduces the risk of serious things developing and I never had anything serious. They can sometimes lower dose or change regime if you find it too difficult so worth updating them. I also divided the extra survival rate by number of chemos and thought I have this much more chance now so it seemed to have more purpose. It was still one of the hardest things I have ever done and I hope one I never have to repeat.

Taking a day out where you can I found helped. I went to see puffins in mine.

It may help to write a list of worries and go through it with them.

@Gogobabyshark I hear you. I was absolutely terrified for my first chemo session. The staff looked after me so well, tell them how you are feeling.
The reality for me was that it was not as bad as I had made it out to be in my mind.
I used to have a celebratory dinner when I got home; reward yourself.

Someone on here directed me to this thread for support, come on over.

www.mumsnet.com/talk/general_health/5219604-cancer-support-thread-96-its-nearly-christmas-get-the-sprouts-on?page=29&reply=144317174

Solidarity. I'm halfway through mine now and the side effects actually haven't been as bad I thought they would be. I'm on paclitaxol/carboplatin then A/C in a few weeks. Seconding the Maggie's centre if you have one - they're brilliant. Do look in to dietary things - my guts are being put through the ringer a bit which is probably the worst side affects for me. Also bring some things to kill time - headphones, download some episodes of something, a book. Though you might find you just snooze through most of it.

Fruity, how are you coping with the gut issues? I’m on doxorubicin (Red Devil) Oh lord it’s grim. My poor tummy, feels like everything has been pulled out and thrown back in again!

I'm starting that in a few weeks - if that's A/C which I think it is. Slightly dreading it!
At the moment I'm avoiding too much green veg , greasy food and carbs. Talked to a nurse at Maggie's who helped me put together a meal plan. Got a stock of diarrhea meds (though I know it can go the other way for some people) and hydrate, hydrate, hydrate! I spoke to my oncologist as well and she changed my medication plan a bit. It turns out the ondestron (sp!) can aggravate gut issues so I'm taking less of it, which has helped.

I’ve had six cycles (paclitaxel/carboplatin and what I thought was called EC, but perhaps it’s the AC mentioned above, it’s definitely red!), I have another 2 to go. Of course the first one is the scariest in many ways, I think most people seem to be pleasantly surprised when they realise that they can actually cope with it. I have done the cold cap have some thinning, but I can still cover it up. they put one on me that was too small the first time and that was really bad, after that, I got better at making myself comfortable, and it’s been really fine, no drama at all.
honestly, I just tend to sleep through treatment and recovery hasn’t been too bad at all, a couple of days of sleeping a lot and then basically back to normal. Exercise is an insanely helpful thing to do, McMillan should chat to you about it, but honestly the more active you are the better. There is a brilliant book called moving through Cancer, I just listened to it on Spotify recently. Getting more active has made such a tangible difference for me and it improves outcomes as well. And of course eating a healthy diet is going to help. this can be a time of a lot of self-care and allowing others to care for you. I really needed both of those things, I honestly think I will look back on this period of my life as being quite a happy one despite all the fear and hassle of it.
you will do it, you can do it, trust yourself, and remember you are needed in this moment, there’s actually no point stressing about the future. When that time comes, you will deal with it.

Thanks.
Think I will call in at Maggies when I’m next at the hospital. I’m struggling with what to eat and taste buds seem to have fallen off a cliff!

Don’t think I like that ondansetron either!

I found with ondasetron on weekly chemo about 2 a week was best for me and they had told me to take 6. Six was unbearable for symptoms. One I took pre chemo and one towards end of week. Lots of alternatives as well.

I was better eating little and often rather than meals and always have 2 litres to drink a day but a lot is trial and error.

Honestly apart from hair loss o didn't really have any issues with chemo. I had mine in the morning and made plans to meet friends for coffee or lunch afterwards. Keeping your moral high is vital and I'm sure it kept side affects at bay

I also found having a chemo buddy helped - I had two, one going through chemo at same time and we whinged together and one who had been through it a few years before who was very kind. One I found from here and one from a different cancer support forum and we e-mailed each other about once a week. It helps to buddy up with someone similar so be positive people buddy up and moaners buddy up, I was definitely a moaner but having someone to moan with helped. And just focussing on getting through it a day at a time not the whole lot at once as that was overwhelming. And every day done was one day down. People vary how they found it, I found it very tough but my worst side effects were from steroids rather than chemo and reducing those helped. It was largely the emotions that was tough, physically was like mild flu everyday for me, well not like mild flu but that level of annoyance rather than feeling worse. Losing hair I found difficult, especially with one breast off, but now am 3 years on and hair is back and breast reconstructed.

@Gogobabyshark How did your Chemo session go?

I had 3 Red Devil (EC) and 8 paclitaxel back in 2021-22. It was hard. But I'm out the other side now and living life as best I can.

Things I found to help, was to take ALL anti sickness, I kept some ice lollies in the freezer and I bought fruity sweets too to suck on. Day of chemo was drink, drink, drink - tons of water. I also kept a diary of how I was feeling. The EC was in 3 weekly cycles, so week 1 was tough but by week 3 I felt pretty good.

Sleep when you can. I did find it tough but not nearly as much as they make out on the TV.

I'm starting this week and having a bit of a wobble. I'm so worried about feeling sick and not being able to manage with anti-sickness meds. DDs birthday 2 days after too 😫

Take all anti sickness - even if you don't feel sick, as once you start being sick it's hard to stop and control it.
If you do end up being sick, ring your cancer unit. Friends of mine ended up with someone coming out to give them an injection.

Join the community forum groups on Macmillan and Breast cancer now (if it's breast cancer) - I found them invaluable with support. Also check if there's a local cancer support group, I've made life long friends through my cancer diagnosis.