Dread of Chemo

Braveheart60

Hello everyone, so glad to join your group with my first post. I live in
Cairns and was diagnosed in Nov with ER+ PR+ HER2- and underwent
lumpectomy for 4.5cm tumor and removed 7 lymph nodes. Outcome was 4 of 7
nodes were cancerous so my prayers to avoid Chemo went unanswered. I
remain very grateful that I got away without having to have a full
mastectomy. Further tests showed lesions in liver and lungs which have
since been cleared as not cancer, what a huge relief. I had a port
implanted which is very irritating and a constant reminder of the chemo
to come. The waiting as you all know seems to be endless from the moment
the GP says you have cancer to the day of your first Chemo. My first
day is Tue 9th Jan and it feels like a dark cloud hanging over me, I
almost cant wait to start so the anxiety of what is to come finally
arrives. I've read that you all say it's different for everyone, so I
guess I wont know how to cope until I'm in it. Any practical advise for
my first date with chemo would help enormously. And, is it okay to be on
your own at home after treatment? Also, how do you cope with what to
expect following treatment? I don't want to sit around waiting for
symptoms to emerge, what does everyone else do when they get home?

Afraser

Hi there

Sorry, but waiting is an unavoidable part of the treatment - it is not possible to predict how you will react (or if it is, I don't know anyone who knows how to!). For a first treatment, it is useful if you have someone (a family member or friend) to go with you and to help you home if you feel unwell. What happens during and after the first treatment will give you some idea of what to expect thereafter, although if you change therapies (I had 3 months of A/C, then 3 months of Taxol) your reactions may change .I don't know if you are living by yourself, or mean is it OK to be home alone for periods of time (ie if others are at work). Again, it depends how you feel. I had no nausea or fatigue, some have nausea but are not frequently sick and have a degree of tiredness, some are badly affected by both. There does tend to be a cycle - you will get to know what that is, and then can plan better as you will know what days you feel better and what days you don't. Take something to do during chemo - whatever you enjoy - reading, crosswords, but something to occupy your mind - it can be tedious, and it doesn't help to sit fretting about what's happening. Most day oncology units will offer you something to eat or drink, but you may want to take something with you - It's another way to fill in time. If your chemo is likely to make you lose your hair, this may occur in about 14 days after you start. Scalp tingling and slight discomfort beforehand is normal. My day oncology had a small range of scarves and hats available (although I chose to wear a wig). It's almost impossible to shake off that dark cloud at this stage, but remember that every chemo treatment is one nearer the end of your chemo treatment, count them down!  Best wishes.

kezmusc

Hi @Braveheart60,

Welcome xoxo.  And yes, the fear of the unknown is awful.  Once the first one's done and out of the way thoug you will be able to guage from there.
Sounds like we have a similar story.  I too had lumpectomy, axillary clearance (5 out of 24 positive) chemo (4 x 3 weekly AC the 12 x weekly Taxol), radiation ER+ PR+ Her2-.  
Side effects do vary greatly but some of us get through not too badly at all. Some not so much. Probably best to have someone home with you on the first one till you see how you go.

Different drugs, different side effects with me.
I just felt really tired/drained and  dizzy the afternoon of chemo with the AC so just laid on the couch and watched movies. I couldn't have driven home on my own with this drug, but the dizziness could have been from having my head frozen for hours with the cold cap, I don't know. Probably not though as I had none of that with the next drug. Day 2 and 3 had a huge boost of energy due to the steroids they give you. Hardly could sit down for a moment.  Then tired mild nausea day 4 then back to pretty good till the next one.  It was the same for me every time so was easy to work around.

The Taxol I had almost no problems and drove myself there and back each time. Worked, did all my usual stuff etc.

Definitely take something to do so you don't get bored.  Books, colouring,  ipad whatever It's boring as hell once you stop playing with the remote on the chair lol.

I am sure there will be many helpful hints put up by all the lovelies on here.
All the best and don't hesitate to ask any questions.

socoda

Hi @Braveheart60, I didn't have any chemo but just wanted to say Welcome to the forum and send you a big hug . Xoxo

Sunshine0206

Hi there,

I’m 3/4 of the way through chemo - completed AC and finishing of taxol now.

i understand your anxiety of just wanting to start. Wanting to know what it’s like. Getting on with it is empowering. Feels like control. I get you. I felt the same. 

When it did start I was ok. Anxious and teary but ok. No nausea. Bit tired but I was still recovering from bilateral mastectomies (one elective/I’m 41)All things considering I felt good. Head hair  fell out about day 17 along with all other hair about day 14. I fell into the cycle of treatment. Feeling bit crappy for a week then 2 good weeks. It really was not too bad. I had no expectations so was never disappointed or surprised. 

Talk to the nurses. Tell them your worries: they will make referrals if necessary. Be frank and honest. Trust your team.

Maintain gentle exercise. It helps with fatigue. I swear it. Referral to exercise physiologist will help.

Try some mindfulness practices. I was pretty anti that stuff but it has helped my type a personality settle down a bit. 

Try to sleep well. Get help with that if necessary. 

Ride the wave. Don’t fight it. 

Best wishes.
xx

primek

Reading your post reminded me of my chemo. I was anxious to start and also so sad. I can remember crying in the shower that morning. Then I pulled it together and slapped on my big smile and off I went. It's okay to feel frightened, sad or nothing...as long as you turn up. 

I felt very tired after chemo due to drugs so wasn't fit to drive. A number of hours later I just felt weird and thought I would be sick (I wasn't but felt it) it was scary for me. It was only a couple of hours for me alone but I recall feeling I needed someone there just in case.  So if you can have someone there for your first day would be good. Or at least someone you can call if you don't. The 1st one is very unknown, many people have no issues. I wasn't one of them and eventually required additional days if steroids plus 2 antinausea meds. I was on ACT-H. ...you certainly wouldn't be gaving the H.

I had someone with me every chemo (not herceptin) so I had someone to chat to. My unit was small and no division between chairs  and same nurses so we often chatted and I got to know other patients so we chatted too. I often dozed but struggled with reading because of meds. Everyone is different. Colouring books can be good to pass the time. 

Best of luck and let us know how it goes. Kath x

Braveheart60

Terrific advice, thank you everyone, I wanted to reply to each conversation separately, but can't work out how to do it.!! I don't have children, I only got married in March (2nd time) seems unfair to have to deal with this so soon after our wedding. I lost my first husband to mesothelioma in 2008 we were together 31 years, I cared for him for a year before he lost the fight, I never would have thought it would happen to me. I'm going to keep reading posts here and asking questions as a way to get through this. Thanks again xoxox

Mollygirl

@Braveheart60, yep unfair is right and an understatement. I'm really sorry you have to  join this band of pink sisters but - welcome. You'll find everyone's situation and story is different but that's the great thing - you'll get such a variety of help, advice and tips. 
I finished chemo in September and I elected to have mine about middle of the day so I could have a really good breakfast then head in for my consult with onc then chemo.  I had 3 rounds FEC then 3 rounds Docetaxel ( I had triple negative ca). I never drove myself home ever. When I got home I rested and found having my son and husband around a good distraction. 
I kept a book and entered info in every day - when I took my meds (cos I was scared I'd forget and I kept getting befuddled) recorded my temp twice daily and my bowel motions - sorry but I needed to keep track or all of a sudden it was five days gone and I was pooping a concrete missile. I'm a nurse and pretty OCD - a doozy combo!!! 
My chemo was every 3 weeks and we went to our favourite Greek restaurant every 3rd Thursday night before Fucked Up Friday (chemo day) as a nice treat. 
We're here for you. Ask anything you want. Ask us lots. Vent with us lots. 
Massive hugs xxoo

Payne

@Braveheart60, reading your post brought it all back to me.  That dreaded first chemo.  I was in a state and had to take 5mg valium.  Someone drove me of course.  Helpful to have someone with you to distract,fetch coffee, tell jokes etc.  even though the unit supplied refreshments and sandwiches. Helpful to have someone on hand when return home, even if just for peace of mind.  have some precooked meals or snacks ready and some icy poles or juices.  They usually give you steroids which continues for day or so after so the tiredness doesn't usually set in till couple days after.  I guess it depends on the type of chemo you have and whether or not you have the injection 24 hours post chemo for white cell boost.  Talk to the chemo nurses, they should walk you through it.  They will give you a booklet of dos and dont's  and step by step procedure for emergencies.  Most chemo units will follow you up by phone following, especially first treatment.  Best of luck.  As @Afraser said, you can starting counting down from first treatment.

Braveheart60

I have very long blonde hair which was transformed today into a very short stylish cut. It's only a hair cut but to me it feels like the first step along a long dark road with no going back. I'm not depressed it's more like a realization of whats ahead of me. Will all food taste metallic and are your taste buds affected from day 1 of chemo.  I was going to cook and freeze some meals ahead but I'm not sure what I will be able to eat?

onemargie

Hi there lovey. Welcome to the forum rest assured you will never feel alone when you chatting to us. I did a big cook up before I started treatment cooked enough to feed the whole country it seemed but better than the family starving!,  I had really long dark hair and cut it short then shaved it day 14 as I started to shed in big clumps. I found it much less stressful to shave it rather than watching it all fall out on the floor. My taste was affected but I had cravings like when you are pregnant it was the weirdest thing had to eat salty stuff mostly had a craving for beef chow mein for some reason but ate it for weeks and weeks chucked a heap of Veges in there too. Couldn’t stand to drink water so I would drink that mt Franklin sparkling flavoured one. I didn’t have an issue with the nausea just the fatigue. So I would get up early walk our dogs potter around and do the wash8ng etc and get dinner sorted then i would rest through the day. Could do more the second week. But did lose my appetite for the first few days after treatment but then made up for it after that. My bc was triple negative no lymph nodes involved. 3cm tumor could of had a lumpectomy but opted for the mastectomy so I only had to have chemo and not radiation as well then took the other boob off 6 months later as a preventative. I’m in qld too brisbane north side and am on the public wait list for reconstruction. I finished chemo 4 AC fortnightly and 4 taxol fortnightly October 16. I was 43 when I was diagnosed with no family history and negative for the gene test.  Hang in there love everyone is different. I took each day as it come but was the same throughout treatment didn’t get any worse. It can be a bit shitty at times but it is doable. Biggest hug. I’m happy to send you pics of y hair before during  and after if that helps too. Margie. Xx 

duxx1234

@Braveheart60 I have just joined this group too and have been overwhelmed by the kindness of the members and their wonderful positive attitudes! Like you, I am starting my chemo next week on the 10th for TNBC so you are a day ahead of me. It is all very daunting and the fear of the unknown is real, but I have been very encouraged from the feedback of the other members here. I'm in Brisbane.  Best wishes to you. 

Braveheart60

Hi Onemargie, were you advised to have the other boob off or was it your plan?  I asked my breast surgeon if I had a mastectomy instead would I still have to have radiation and she said yes, there it made no difference to the treatment. Sparkling flavored water is a good tip, thanks. xoxo

Jual

Hi Braveheart, 
i have been there recently and fortunately the anticipation has been worse than the reality. I will be having my 5 th chemo on the 8th Jan. What I found useful was following the advice of the nurses around preventing constipation. They have really good drugs to prevent nausea now so that is very unlikely. 

I found carefully recording my side effects each day after the first chemo very helpful as I then took this into the oncologist and he was able to advise me about meds to take to prevent as many side effects as possible the second time around.

Having some common meds on hand is useful like paracetamol, Imodium to stop diarrhoea, rehydration powder for diarrhoea. I found using gentle toothbrushes and salt and bicarbonate mouthwashes for the week after chemo really helpful. Not much you can do about loss of taste unfortunately! 

My hair fell out 2 weeks after the first chemo, getting it cut short first really helped me. Walking or some exercise each day has been shown in studies to help with side effects as well. 

The portacath should settle down and be happier and some local anaesthetic cream is good an hour before they insert the needle.
All the best for the 9th. 

onemargie

Hi there again @Braveheart60 I took the other boob off as my gut told me too. My surgeon said it wasn’t necessary but understood why I wanted to have it done too. Everyone is different and you will do what’s right for you. Margie xx

Sunshine0206

Hi,

No problems with taste. Nothing metallic.

I gradually cut my hair shorter. I quite liked being bald. Easy to style. Bit more maintenance. My cancer was triple positive. I say was because I am trying to believe it is GONESKI!!!!