How Does Chemotherapy Feel: Is It Really That Bad? My Chemotherapy Diary
What On Earth Am I To Expect?
The countdown has finally run down and now I am due to face chemotherapy.
For a period I was simply terrified of having to endure this process - especially since everyone keeps telling me that it is a precautionary measure, then in the next breath tell me how dangerous and toxic it is. Here is a day by day account of how I feel to help others prepare for it...
Day One - FEC
Well, I have now had the "chemo" - and it was not as bad a feared. I am still alive and still amazingly, feel like myself. A big part of my focus was concentrated on the cold cap and whether it was large enough for my head. I have been told that the "regime" I am having - FEC-T (3 cycles of FEC followed by 3 of T) is notorious for hair loss.
When I got home, I had some dinner which were some dubious salmon fishcakes. They kept repeating on me and making feel sick during the night so I slept uneasily waking up every so often and wondering whether it was the medicine making me sick or the fishcakes! About twice I did wonder whether I was going to be seriously sick so I took a bowl with me to bed but never used it.
Advised to drink lots of water (but not too much) to help flush the drugs from my system which has been easy to do as have a continual thirsty feeling. I think I have drunk too much though - and I think this in itself may be ccontributing to the sicky feeling.
Been generally ok today - felt ever so lightly flushed in the face but nothing to concern me too much. Felt a little cold earlier, so wrapped up but then felt hotter later. Been trying to drink water as I feel a little thirsty all the time but not felt sick again today despite having a toasted cheese, ham and onion toastie for lunch which I thought may repeat but has not. Not drank so much water today and think I need more. Walked up to the shops fine with no trouble.
I think my skin tone in my face has changed to a slightly redder in appearance, like I have been out in the sun. My mastectomy scar also seems redder. I painted my finger nails dark red as I read on the internet this helps to protect them from falling out - whether this is true or not remains to be seen but they look nice in Chanel Rouge Noir!
Feel ok again - a little tired perhaps. Inside of my mouth feels hot at times and I still feel thirsty but this usually goes when I drink some water. Finding fizzy water good.
Perhaps I will not feel so fine anymore as today is last of steriod drugs.
More irritable with kids - lose patience more easily than usual.
Noticed the cuticles on my toenails looks different - they are kind of pulling up the nail which they usually do not, but perhaps this is just my imagination.
Very tired today - but this is due to not being able to sleep properly. I have heard that the steroids they give you can keep you up and I have finished the course now so hopefully I will get some sleep tonight. Noticed yesterday that a bruise I had on my hand from the nurse having an unsuccessful attempt with the needle first time around came up in a big red blotch but I think it is normal to have things like this with bruises being worse and your blood is not functioning as it should.
Drove to my Mum's today and felt my judgement was impaired - I forgot to give way to the right at a roundabout and then could not judge distances when cars were coming towards me. Nothing dangerous happened, but I noticed I was not quite right.
I also forgot to put the bins out last night which I never forget - my sense of which day it is is foggy and keep finding it hard to focus on things a little. Walked to school and back ok though and the walk did me good I think.
Actually slept really well for once - managed to stop dozing and nod off completely which was good.
Been eating normally really - not feeling too sick. Had a chinese takeaway - against the advice of not to eat takeaways - was a bit scared when I went to bed in case I was pushing my luck but I was ok.
Slightly constipated, much like when I was pregnant actually, and I went out in the car again and was fine today, so suspect worries of yesterday were due to lack of proper sleep affecting my judgement.
I keep tugging tenatively at my hair waiting and wondering what is going to happen - one minute I am convinced I am naïve for thinking it will not fall out - then the next fully believing it will stay in. I have thick hair and a lot of it, so everyone is hopeful it will at best just thin, but I am not so sure.
Slept all morning and still felt tired on waking...very deep sleep with very vivid dreams. Then got up and did housework as had visitors.
Was right off my food today and did not fancy anything much to eat today - just ate some crumpets with sugar and then a red pepper stuffed with rice and topped with breadcrumbs. Really craving sweet things which is unusual as I am usually a savoury person!
Taking the last of my anti sickness tablets today so wondering what will happen tomorrow. But still feel ok. My kids have a horrible cough and have had colds and so far I have not managed to catch it but feel it is only a matter of time...
Had a bowl of shreddies for breakfast and gobbled them up. Walked to the school - came back and ate crisps and then ate two toasted cheese sandwiches with onion and tomato sauce and loved them - so I would say my appetite is back!
Unbelieveably I still feel ok - just a bit tired - I am going to make the kids have an afternoon nap so I can have one too! My mouth feels a bit hot sometimes but gargling with salt water helps this. I have noticed that I sometimes feel a bit cold at times and have to snuggle up with a blanket but this is not so bad. The chemo clearly plays havoc with your internal heating!
Had the chemo exactly one week ago and it feels like ages! Gobbled a three egg omelette for lunch and it was gorgeous. Washed my hair today as well which was a milestone - did it lying down in the bath and kept a close eye out for rogue hairs...it did seem as though lots were coming out in my hands but I usually end up with a huge dead rat in the plug hole due to having lots of hair and the end result was actually less than usual - especially as I have not been brushing it as much as I usually would so this was quite reassuring, so perhaps the cold cap has worked!?
My kids have been coughing and sneezing all week and I have been trying to keep out of their line of fire and washing my hands whenever I wipe their noses. I did sneeze a few times and felt a bit woolly headed like I was going to come down with a cold, so I called up the chemo ward just to check that this was not going to be problem as I am fast approaching my "danger period" where I have no immune system. The nurse told me as long as I do not have a temperature or develop a chesty cough then not to stress.
I have wondered whether the chemo is working as I have not seem to have suffered as badly as I thought I might have done but perhaps the worse is to come? It is so hard to know what to expect as everyone is different but I cannot wait to go through this first cycle completely to know when my worst time is...so far it has not been nowhere near as bad as expected...
Feel fine today - a bit tired around 14.30 but then that is usually nap time so not surprising.
Only concern of the day is that my head began itching early evening so much so that I even checked my son for nits! I then googled it and found that some people got a really itchy scalp before their hair fell out and then I had a bad half hour where I got really upset and was crying inconsolably at the loss of my hair. (My partner was sympathethic for about ten minutes then told me that it has not gone yet - I was crying over something you googled - not for the first time).
So I had to pull myself together. It is going to happen. I keep kidding myself that I will be lucky; I wore the cold cap and have thick hair and lots of it. It is only hair at the end of the day, but for some reason, it is really upsetting to think of it gone, even though I have never really liked my hair that much!
Feel ok today - the only thing is that I keep thinking about my hair. After the first few days of chemotherapy, I made a big point to not touch my hair at all; now I keep running my fingers through it and examining how many hairs come out. I notice the hairs that do come out have a little white bulb on the end and indeed, a lot of the time there is one bulb with two hairs attached to it. Perhaps this is why my hair is so thick - I have two hairs growing out of a lot of follicles...
Became really, really obsessed with my hair falling out - so much so that I spend a good chunk of my day ignoring my children and researching nice turbans online. Finally ordered one with great anguish that I was choosing the right one - they were quite expensive and I was stuck between three - but finally decided and ordered it.
Felt completely fine other than feeling a little tired again around 14.30.
Somewhat concerned that I have "no immune system" now for for 4 days. On leaving the hospital I was warned that between day 10 and 14, I am at my weakest ebb and will then rebound. What is it like to have no immune system? My uncle told me that he knew a man going through chemo who had such a weak immune system that he was kept catching infections off himself! I have always been quite strong and healthy and this whole situation is very surreal to me especially as I still do not feel any different!
Still waiting to feel something due to having no immune system - have boycotted a kids birthday party due to the fear of catching something from someone and also banned my children from going too. Washed hair again - noted more this time coming out and had another little cry - but my partner reckons he cannot even notice any difference. I think that the top of my hair looks flatter than usual.
When I kissed my little girl goodnight, she had a snotty nose and it went onto my mouth when she kissed me...I was slightly freaked out and went and washed it away immediately concerned that I may have a "War of the Worlds" moment and die from the common cold! My partner is out tonight as well at a work party so I hope I do not need to dash to the emergency room as I do not know who will look after the children!
Well, still alive, despite apparently having no immune system, I feel totally fine and completely myself now, so until something significant happens...i.e. my hair really begins to fall thick and fast, I think I shall stop this diary for now...
Chemo Number Two - FEC
The overall conclusion so far is that chemotherapy is definitely do-able. I am just about to face my third session and so far it has not been the debilitating experience that I feared it may be. I am very lucky in the fact that I do not have to go to work daily (other than look after my children) so at least I am at home for the most part, but if you are about to face chemotherapy, then please do not fear - you can do it and still live your life!
In the following week; I have had a cold, but did not develop an infection thankfully; have had trouble with my bowels, but got through it; have noticed my teeth starting to turn a rancid yellow (but this turned out to be the mouthwash reacting with my toothpaste rather than the chemo!), and had really aching muscles at one point, but generally speaking, I am still alive, fit and well! I did have to have a round of injections to bring up my white blood count, but I actually felt fine during this period.
My main complaint is that I feel tired. And I still have my hair...for now...
Chemo Number Three - FEC
I am now writing from three weeks after my chemo number three...and still have my hair! I do feel generally tired and never want to wake up in the morning, but once I am up, I am ok. This round of chemo has seen really sore muscles hit me on Day Four - like I have had a tough round at the gym the day before. This happened last time around and goes after a day. I think it is just the steroids leaving my system. There is definitely a cumulative effect to the drugs. After my third dose of FEC I was able to cope simply by thinking "Yay, this is last of that feeling!". I had this round of chemo pushed back a week as my white blood count was too low (this is apparently normal to happen) and in a way I was relieved I had more time to recover physically before the next dose, as my arm was hurting quite badly where they place the IV line, but it was actually worse for me pyschologically. As I had four weeks to get back to normal as opposed the three, the actually feeling of the drugs hitting me affected me more. I started to have that burping and indigestion feeling halfway through the infusion and it made me feel really depressed to think I was doing this again. My vision also went a bit blurry and I could not concentrate on my book; neither did I want to talk to anyone, whereas prior to this moment, I was quite happy, bouncy and chatty. But anyhow, I got over it and it really did help to think at least this was the last lot of FEC and I was making headway to getting this over.
The only other real isse that I have had this time, is being plagued with a bad cold sore, which I have never had before, but this is more annoying than anything. I am now due to face chemo number four tomorrow, which is the "T" part of the regime (Docetaxel) and I am feeling quite nervous as the whole ordeal has not been as bad as expected so far, but everyone keeps warning me that this drug is more toxic and harder to deal with than the FEC. I will just have to wait and see...I am preparing for the worst though! I have read that people who have kept their eyelashes and eyebrows have them all completely vanish after having this drug.
I have to take my little boy to school in the mornings, and I actually find that having a little walk each day is beneficial - it clears the cobwebs away. Getting up and getting on with it helps I find...at the weekend when I have a chance to sleep in, I paradoxically feel worse!
I have also had my loading dose of Herceptin in the meantime. This did quite worry me as I was told that I had to stay in hospital for six hours afterwards to make sure there are no side effects. There were none and I left hospital feeling completely normal and even went out for a meal that night afterwards. Herceptin is a relatively new drug that is now being used if the cancer is marked positive for having too much HER2, which mine did. I am taking part in a clinicial trial called Persephone, which is designed to find out whether six months of this treatment is as effective as twelve months. I signed up as I wanted to be in with a chance to have six months, which I was lucky enough to get allocated. Six lots less of needle poking trying to find a vein, hospital time sounds good to me!
Chemo Four - T
Overall, I found this first dose of Docetaxel to be easier to tolerate than the FEC at the hospital. It was definitely quicker, and I went home feeling my normal self, ate dinner, and it was actually really nice not to have the sicky, burpy feeling all the time and I was quite convinced I was going to sail through this later part of the regime.
HOWEVER, four days after having the T, I felt like I had been hit by a truck! I started waking up in the morning with blood in my nose and my left eyelid started to flicker like crazy. I did not feel "right". I do not know if you have ever had a really bad hangover where you feel like you have done yourself some serious mental damage the following day - your thinking is impaired, you just want to lay down and die - well, I felt a little like that. It is the closest thing I can compare it to. You are just not right - you feel jangled, poisoned. I just kept wandering around the house saying to my partner - "I just don't feel "right"!" And the reason is that Docetaxel interferes with your nervous system, so I guess you will not feel right. However, it does pass. You still look the same to others around you, but there were times where I simply could not get a handle on which day of the week it was! However, you can still function, I could still take the kids to school, prepare and eat meals, read books and play games on my Nintendo DS so my only tip is just to get through these period day by day, doing whatever you can to pass the time and within a few days you start to feel more back to normal. Just be gentle with yourself!
I found I also had an enormous capacity to eat in these initial few days after the dose. I would eat and then sit and think what could I eat next. And then I would evacuate it all out! I believe that Docetaxel exits your system by way of your bowels, so that could explain this. I would then spend the next few days following this constipated which is not fun, so bulk up on the All-bran!
My symptoms - although the same as with the first dose of Docetaxel - were a lot milder. This may be attributable to my having had the infusion dripped through slower as I had a reaction to the second dose.
© 2012 Earthy Mother