Supporting women whose lives have been touched by breast cancer

Not an easy FEC

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I am afraid that my FEC (6 sessions, 1 every 3 weeks from the beginning of September to the end of December) was not all plain sailing but my experience, although it can seem a bit frightening if you are new to this disease and about to embark in the process, is proof of the fact that, however bad it seems, we can do it! and come through smiling at the other side and ready for whatever life brings to us next. I never stayed in bed, not even when hospitalised, beyond 10 am. Everyday I got up, got dressed and kept myself busy, however poorly I was feeling (and sometimes, I felt really poorly!). That was not because I was super-woman, it was just that I was feeling so bad that I decided that FEC was not going to win over my life and I fought tooth and nail to stay “vertical” rather than “horizontal”. But, always remember, we are all different and also fight the symptoms and side effects differently.

I was diagnosed at 46 with two primary breast cancers (one in each breast, both stage 2, hormone receptive, lympho-vascular invasion present) and had chemo (no radio) following a bilateral mastectomy. I had my treatment through a private insurance so I had all my chemo sessions at home, which I found really comforting, and saw my oncologist on the third week of each course although sometimes, when my body decided to go neutropenic, I saw him more often. I saw my chemo nurses every week and had a contact number for them which I could ring any time. I also decided to have a PICC line inserted for two reasons: one, I absolutely hate needles! (I tend to faint at the sight of one!) And two, since there was danger of lymphodema in both arms in my case, the oncologist strongly advised me to go for a PICC line. I never regretted it!

1st FEC: The first FEC went in well (easier than I thought!) but my nausea started almost immediately and never stopped for one second throughout the duration of the 6 courses (18 weeks). My hair started to fall on the second week and I became neutropenic on day 10 and was rushed to hospital for a couple of days. The oncologist ordered the FEC dose to be reduced for the next session and explained to me that although the dose is calculated on height and weight, the reaction to it can be affected by whether the weight is because one has a big bone structure or body fat. I have very little body fat so, obviously, my body decided to rebel to the chemicals pumped into me. I started with hot flushes and night sweats also immediately.

Becoming neutropenic was a shock to me, one minute I was having a lovely time with a friend and the next I started to feel really, really, ill (with a very high temperature for no apparent reason). I got frightened so I called the nurse, who immediately asked me to pack a bag and go straight to the oncology hospital, where they proceeded to pump me with antibiotics in a drip for the next 48 hours. The interesting thing is that, apart from feeling very sick, I realised that I had been very, very, cold all day, not being able to warm up, even though I had had the central heating on and a log fire (at the same time!) in the room I was in. This extreme cold then became the “tell tell sign” for me the other two times I became neutropenic.

For the hot flushes and night sweats I had nothing. I just wore natural fibres all the time and used 100% cotton bedding (and still do both).

And as far as the hair was concerned, it really did not bother me in the slightest. I used to have long hair (and loads of it!) but had it cut very short as soon as I was diagnosed because I knew what was coming so I gave myself time (2 months, during the two surgeries and the recovery period) to get used to the new me without too much hair. The day before my first chemo, I had my head shaved. Although losing the hair was not worrying me, I was not prepared to see it falling. Again, it was a way for me to control the FEC and its effects, not the other way around. I bought a blond straight-haired wig (my normal hair is dark and curly) and decided to enjoy life as a blond! I also used scarves and hats at home at the beginning but then I got used to being a “baldy” and didn´t use anything when I was home…although I did use a woolly hat at night because, when not having a hot flush or night sweat, I was usually very cold (I kept wondering how some men can cope without hair and the cold weather most of their lives!)

And as for the nausea, apart from all the pills I had to have, I tried ginger tea, the travelling wrist thingies and anything else anybody could suggest. Nothing worked throughout the whole chemo so I just learned to eat whatever made me feel less nauseous. I discovered that the secret was to eat little but often so I always had crackers around me (unfortunately, without the cheese!). My taste changed completely and I had to give up a lot of things that I really enjoy (coffee and cheese being two of them). After the chemo effects wore off, I went back to my normal (sometimes unhealthy!) diet.

One of the things that took me a greater effort to get used to and not get too bothered about was the chemical smell in my body (which also lasted all through the chemo). At the beginning I hated it but since everybody told me that it was only me who could smell it, I became more “comfortable” with it little by little.

2nd FEC: neutropenic on day 10. Rushed to hospital for a couple of days. Went home and had to be taken back to hospital for another couple of days when my blood count went really low again. FEC dose reduced once again. For the rest of the duration of the chemo I was having 3 gramms of antibiotics a day (the oncologist explained that he wouldn´t be able to reduce the dose for a third time so the antibiotic was just to keep me away from hospital). I also kept an overnight bag ready by the door, just in case, until the third week of the last chemo session. I hated the antibiotics. The pills were absolutely massive and had to be swallowed one hour before meals so I found myself having to put alarm clocks all over the place three times a day to remember taking them at the right times. They did rule my life a bit but the fear of being neutropenic again and having to spend time in hospital was bigger than my hate for them so I tried to keep to the routine without getting too upset.

3rd FEC: As in the two previous sessions, I experienced every single side effect on the book, although especially bad were: loss of sleep, constipation, joint pain, extremely dry skin, loss of appetite, nausea, problems with eyesight, throat, nose and mouth dryness (severe sore mouth and gum problems, constant nose bleeds), extreme fatigue... by then I was having around 20 pills a day to counteract all side effects of the chemo. I was also having other medicines such as Movicol, Difflam (mouth wash to numb my mouth) and something called Salivex, some chewy “sweets” to help produce saliva. Even though I was drinking around 4/5 litres of water a day (plus all the mint tea I could swallow), my mouth was in a mess. My whole body was so dry that I began to look like a prune. So, for the first time in my life, I started to act like a “grown up” and spent money on good face creams, body creams, body oils, etc, etc, etc., which helped a little bit…I think!

During this third cycle, I did the “Look good, feel better” session in my local oncology hospital and I really enjoyed it! My goodies bag was wonderful and the people who did it were superb so it cheered me up no end.

4th FEC: more of the same but a bit worse! But I was happy because I had just passed the half way mark and also seemed to have got used to the effects and had managed somehow to keep myself away from the oncology hospital for two cycles. The loss of eyesight was really bothering me by then. Having always worked full time, I was cheering myself up during chemo with the fact that I was having a lot of time to read, paint and do some evening classes but the loss of sight coupled with the complete lack of concentration and memory made my hobbies difficult…until I discovered the electronic book, where you can increase the font of books and any document in PDF…what a relief! Although I had to stop painting, I could still read and feel “normal”! (The problem was that I could not easily watch TV or be in the computer because the back light of the screen was really affecting my eyes so the electronic book gave me back control, something that I felt I was losing and got me down a bit).

5th FEC: every symptom getting worse but eyesight, nausea, fatigue and constipation really bad. One day I ended up stuffing myself with 8 sachets of Movicol (to little avail) because I was feeling really sick… and then, Oh, joy! I had to endure some new friends: piles! The cumulative effects of the chemo were very noticeable by then but I kept thinking “Hold on in there, just only one more, just only one more…”

6th FEC: I could not read or focus my eyesight at all (so even the electronic book was difficult by then), the rest was just getting worse and worse. Plus memory non existent, kidney not working properly and blood pressure sky high (need medication since)...and an incredible bout of psoriasis all over the body (never had it before) as soon as the third week of the chemo was over... on top of everything else, I looked like a monster, to the point that people turned back in the street to look and children made faces when they saw me!!! GREAT! (it spread to, I would say, about 70% of the body. Thank goodness, there was none on the face but quite a lot on the scalp so had to get rid of my wig! The legs and arms were absolutely covered with it), so imagine the itchiness and discomfort...I had to have UV treatment in the hospital twice a week for six weeks after chemo finished).

The lowest point (in terms of cumulative effects) of my last cycle (day 10) was Christmas day. I could hardly move that day. My husband, who has always been my rock, tried to make it for me as beautiful as he possibly could but re-reading what I wrote then, it is obvious that it was also my lowest point in terms of turmoil in my emotional wellbeing…and for the first time in all this process (including diagnosis) I cried…and cried…and cried that day. On the one hand, not being able to be with our family really got me down (after the ordeal of the previous three months, I was too weak to do anything) but, on the other hand, I suddenly realised that “that was it”, that chemo was finished…and I was happy but very frightened…had it worked? Would my body manage to keep this disease at bay? Would I ever feel myself again?

The “worst calendar year of my life” was about to finish the following week and I was completely at a loss for the first time in my life…so only one thing left to do…Waving good bye to 2008 with the biggest party ever on New Year´s Eve!

The most interesting thing of all? I can hardly remember anything from my chemo days…I can only write this because I kept a very detailed diary. Ok, it could be that I still haven´t recovered from my “chemo brain” but I am now convinced that the human mind is wonderful in making us forget pain and extreme discomfort.

So, don´t be frightened about chemo, please. Your medical team will be there to help you at every stage and there are lots of support groups that you can go to. My advice? Keep a detailed diary! That´ll help you to talk to your nurses/oncologist about all the side effects you are experiencing and they´ll be able to give you whatever you need to counteract them.

Since then (a year and a half later), I am back to working full time in a very demanding job and my body seems to have kept the disease at bay. Through yoga I have recovered full mobility in both arms and my surgeon did a wonderful reconstruction job with silicone implants. I started on Tamoxifen just after chemo and had to change to Fareston because (surprise, surprise!) my body reacted violently to Tamoxifen! Fareston was not better so I have ended up with Arimidex. The side effects have been awful in terms of joint pain but… hey ho! According to my chemo diary, I have had worse!