Scared of chemo

[Kkaren]

I have my first appointment with the oncologist tomorrow and am scared stiff. Having wound myself up about the surgery my main focus of panic and worry is the chemo. I have an absolute phobia about feeling and being sick and that’s all I can think of. Is there anyone out there who came through this relatively easily. Help !!

[Rachael47]

I was never sick with first-line chemo. They give you lots of pills to control it. Constipation was an issue. Chemo is a bore, and unpleasant in many ways, but the alternative is not much better.

[Kkaren in reply to Rachael47]

Thanks Rachael that’s good to know. I have suffered constipation for years so we’ll used to that one 😀.

[Coldethyl]

I was never sick with first line chemo and this was my biggest fear as I’ve a trigger happy gag reflex at best of times -I occasionally felt nauseous but didn’t need the anti sickness meds they plied me with - it isn’t the nicest thing I’ve ever done but you do cope - I would have a few days around day 5-9 where it was hardgoing but mostly I managed to cook and go out and about albeit at a slower pace xxx

[Kkaren in reply to Coldethyl]

Thank you. I just have this mental picture of lying in my bed for the next few months suffering from every side effect I’ve ever read about. I always have to have something to worry about which is so exhausting. I appreciate everyone is different so hopefully it will be fine. On the days when I’ve had no letters, phone calls or appointments I can just about cope! Thanks for replying x

[Manchesterlady in reply to Kkaren]

Oh Karen , I can so identify with you , you are ahead of me with the surgery, had three sessions of chemo, and like you I was terrified, I burst into tears as soon as I went in , but honestly the first session is the worst , only because it feels so alien , the nurses are lovely. I wasn’t sick , as like you I thought I’d be bedridden for weeks , but I had a couple of days when I was very tired . The constipation is the worst , so ask for advise on that . If I can do it anyone can , because I’m a whimp . Any advise on the surgery please . Good luck xxx

[Kkaren in reply to Manchesterlady]

I can cope with tired and constipation I think and great to hear you weren’t sick. You wouldn’t believe how worked up I got before the surgery. Hate hospitals, hate being sick and hate being out of control. Cried the whole time I met with the anaesthetist before the op. Only had to go in that same morning and sat shaking before they came to get me. Luckily I was first up. Everyone was lovely and I clung on to the nurses hand while I was put under. The next thing I knew I was back on the ward. I was slightly uncomfortable but couldn’t say I was ever in any pain. Mine was an abdominal hysterectomy so now have an up and down scar from that and one across from a c section. Ha no room for any more. Had the op on the Tuesday and was home early afternoon on the Thursday. Was taking 500mg paracetamol four times a day but I only needed that for about a week and was taking it as a precaution and not because I was in pain. Have had no problems with the site at all. Worst thing is trapped wind. Boy is that sore. Three weeks since op and have been in bed for the past three days with a horrendous uti so make sure you drink plenty. I too am a wimp but I did it and so can you. Thanks for replying to me and will hear how you get on. Xx

[Coldethyl in reply to Kkaren]

Anyone who knows me would have labelled me as a hypochondriac pruor to diagnosis - I expected to get every side effect going but I didn’t - the worst thing was bone pain with the taxol - they go through symptoms thoroughly after each cycle and adjust dose as necessary so make sure you speak up if anything feels too much for you - I ea reluctant to have my dose reduced but glad by last few cycles as it is cumulative - I do know what you mean about a good day being one they leave you alone! X

[gmc920]

I’m almost finished with frontline chemo and honestly the only side effect I’ve had is a few days of moderate fatigue with each cycle. I know everyone is different, but you can definitely do this!

xx Gina

[Kkaren in reply to gmc920]

Thank you Gina that’s great to hear. You know what the internet is like - full of folk quite happy to share their horror stories regardless of reasons. Xx

[Hidden]

Hi Karen, we are all different and you know if you need treatment you could sail through it some of us do. So write down questions you need the ask the oncologist, bring a second pair of ears with you its always handy to have a friend in need. Most of all I wish you the best and let us know how you get on

[Kkaren]

Thank you. Will let you know how I get on. Hubby coming with me which is good. X

[Lyndy]

Hi Karen

I also have longstanding emetophobia...not just a bit afraid but properly phobic about vomiting. It was a real worry before chemo...if I hadn’t been so poorly they would have had to tie me to the chair! However...get this...I never felt sick, I wasn’t ever sick, I was fine right through chemo...ate like a horse!

I know it’s difficult if you are phobic but as long as you take the meds exactly as prescribed you may not suffer at all! Take care xx

[Kkaren in reply to Lyndy]

That’s great news and good for me to hear. Fingers crossed I will be the same. Thanks Lyndy for this encouraging response.

[Neona]

I was not sick on frontline chemo even though I felt pretty rough between approx days 3 and 10. It is doable. During the infusion you don't feel a thing though the pre-meds make you quite pleasantly woozy.

[Kkaren in reply to Neona]

Hi there, daft question but why do you need pre meds. Great no sickness though which is just what I needed to hear. X

[chasse10 in reply to Kkaren]

premeds are given to prevent being nauseous and prevent any allergy reaction. I have never been sick. I experience bone, muscle and join pain for about 4 days. Everyone is different and different chemos produce different side effects but I believe most would say it is doable. I find no pain at all with the infusion, everyone is very nice and caring.

[Nancy222]

Don't forget to bring snacks and maybe a sandwich. I always ate my way through chemo And drink lots of water. When you think you've had enough, drink more water.

Good luck.

XXOO

[Maus123]

Hi Karen. I sympathize with your fear of sickness. Same here. Vomiting happens very very rarely to me under normal circumstances, also because I'd rather feel nauseous for 3 days and stay in bed moaning my husband's ears off, waiting for the feeling to pass, than vomit even once (yay silliness) . So, nausea and vomiting were a big concern for me prior to starting carb/tax chemo.

Happy to report that I felt no nausea at all after the first session, only a slight whiff of it after the second session and just since the third session, I could really tell there was a somewhat suppressed nausea issue on days 4 to 7. The feeling was only strong enough to keep me from eating on one or two days after session 3, and I never had to vomit so far (just had my 5th session).

Since I've asked for 5 days of Emend before my 4th session (instead of the usual 3), I did not miss eating for a day.. which is really bad news for my intended diet.

Here's what I'm taking:

Day 1 (chemo) : Dexamethasone, Granisetron (both via IV), Emend 125.

Day 2 and 3: Dexamethasone, Emend 80 (both via pill).

Day 4 and 5: Emend 80 via pill.

MCP pills when needed (had a prescription filled by my GP for those prior to chemo, as well as for Ondansetron, which I have not needed yet) .

Also:

Day before chemo and chemo day: Eating light and less.

During the first week: Acupressure wrist bands (seabands), ginger based smoothies, biscuits/candy or ginger ale,

Different strokes for different folks but even by my worry-wort standards, nausea has not been a crippling side effect so far. It's just an underlying thing occasionally knocking on the door asking 'Can I come out?', only to be told a firm and resounding "No!' by the meds.

You might also not experienxe many side effects at all, but better to be prepared, in my opinion. The good thing is that they are usually accumulative, meaning you get time over the course of chemo to recognize and counter them where possible (or consider dosage adjustment if needed), and will develop a routine. Treat it like a somewhat annoying temp job: If you want the money, you better get on with it.. and it won't last long.

Strength and luck for your chemo. xx. Maus (sorry for the rambling long post.. am awake, courtesy of the dexa steroids).

[Kkaren in reply to Maus123]

Thanks again Maus for your reassuring response. I am such a baby when it comes to anything medical. Hate taking medication and first thing I ever do is look at the side effects which probably isn’t a great idea. I suppose I will find out more today then I will start worrying about that! I am normally a person who if I have something to do I don’t really want to do I would rather just jump in with two feet and get the stress and anxiety out of the way but not with this. I am three weeks post op and have had a uti with yet more medication this week so am assuming they won’t do anything until that has cleared up. Will let you know how I get on. Xx

[Katmal-UK]

Hi. I can fully relate to your fears. I hated the thought of chemo, still do but it is doable, there is no need to be sick with all the anto sickness meds out there. Ive been through standard chemo 3 times and havent been sick once. Yes I have felt sick but thats relieved quite quickly with meds. I hope you get on ok xx

[Kkaren]

Thank you that has helped me a lot. Ha sure if I’m not sick I will find something else to ‘worry’ about. Sadly just the way my brain works. X

[Lizchips]

Kkaren, I was nervous too, no worries, nurses are wonderful. You'll meet a new family there. You will be fine. ❤❤Liz

[Kkaren]

Thank you Liz. One thing I have felt since this all started has been isolation (apart from the lovely ladies here) I have had no opportunity to speak with anyone going through the same thing. I know consultants and nurses are fab and so has my CNS but with the best will in the world they have not been where I, we, are. Hopefully as you say this may give me the opportunity to meet others and have a good old moan. X

[chasse10 in reply to Kkaren]

Ask at your cancer center if they have a support group. Mine has one just for ovarian cancer.

[Kkaren in reply to chasse10]

Good idea I will do that. You never know there’s maybe another few folk out there is my area. Thanks for that.

[Kkaren]

Sorry think I am putting my replies in the wrong box !!!!!

[Katsmum]

Hi Karen

I think years ago chemo was always portrayed as making everyone very sick and in bed for days but it isn’t like that for most nowadays. The pre meds are to minimise any reaction and the anti sickness drugs really do prevent any major nausea so make sure you take the tablets as prescribed. Often it’s fear of the unknown but after you get the first session behind you, you will feel better. I didn’t have any sickness or nausea so hoping it will be the same for you. Sending love and hugs xx

[Maxjor]

Kkaren--just going to add to the choir---I felt sick after the first chemo and told my oncologist who then prescribed all the proper meds to avoid it and I not only did not feel sick after that, I felt completely fine for all the rest of Frontline treatment. Never felt ill, kept working and exercising and led a fairly normal life.

I will say that one of the pre-meds--Benadryl--caused me to feel like I drank a bottle of wine and it actually was a welcome relaxation while in the chair!

After all the stories I heard, TV shows I watched, I feared the worst and it was nothing like that. Wishing you a "not-bad" experience and crossing my fingers and toes for you! oxox

[Kkaren in reply to Maxjor]

Phew that’s great news to hear you had very few problems and that you carried on pretty much as normal. Hopefully I will be the same. X

[coksd]

Hi Karen I felt this scared too the first treatment made me very tired not really sick but constipation is an issue and movicol is the best laxative I have used although I had to ask for it, Before I started i got a wig sorted, then my second chemo was fine I ended up getting the flu after it but it was high flu season, you get to know the days you will be sick so the day you are having treatment you are generally fine you will have steroids for 2 days so again feel fine make sure to take your anti-sickness meds even if you don't feel sick so on the evening of day 4 I would get bone joint pain and the tramadol painkillers actually made me very ill so I was changed onto an anti inflamatory painkiller vimovo which helped a bit, I also did mindfulness and reflexology to help and it did you will be well for more dates than sick let your team know if you have an occassions they may move dates around I had my sons communion the 28th april and I finished the 6th April and \i was fine. Hope all goes well there are a few things you can get like an eye cooler mask for the fridge which is good for headaches a lavender candle to burn before going to bed lavender drops for your pillow, heat packs for joint pain try and get a small walk in most days. I started yoga after my treatment its great to relax.

[Kkaren in reply to coksd]

Thanks for the suggestions which I may well use. I suppose I will just have to wait and see how it goes. Nothing else for it. Love yoga and have had a couple of one to one relaxations with the teacher as I haven’t been able to go to the actual classes. Life long constipation sufferer so have that one covered! Thanks for replying x

[Mptelesca]

Hi, Kkaren...I, too, was scared to death of the very thought of Chemo. I was just recovering from the surgery and knew i HAD to have the chemo, but, was insane with fear.

Chemo no longer has the reputation it had just a few years ago. They load you up with stuff that prevents the usual side effects. The only thing that really kicked my butt (literally) was the constipation. I learned the hard way. Take as many stool softeners as you can.

The rest will be easy. Plus, the nurses are soooooo good....they do a great job of making you feel comfortable and distracted. Good luck to you....you will be pleasantly surprised.

XOX,

Marisa

[Kkaren in reply to Mptelesca]

That’s good to hear Marisa. I suppose it’s only natural to worry about the unknown but it’s good to hear it may not be as bad as I imagine. Things never usually are. X

[Mptelesca]

It's so hard for us not to be scared after all the publicity and reputation Chemo has. I found that hearing the words Cancer and Chemo is far worse than I had ever feared imagining.

Thank God our minds and bodies have the ability to rebound from the initial shock.

Wishing you the best,

marisa