Today I met with the oncologist for the first time since my review of cycle 1. The purpose of our discussion was to find out what to expect from the changeover to docetaxel (Taxotere) the ‘T’ part of FEC-T which will be my regime for the next 3 rounds of chemo. Having happily waved goodbye to the FEC part of my treatment, I went in hoping that the T part would cause minimal side effects. Sadly, I was wrong.
There was some good news. According to the oncologist, docetaxel causes less nausea than FEC and is kinder to the veins. This was definitely good to hear as (a) I detest feeling sick and (b) my veins are already starting to protest from the continual influx of poison. Now for the bad news. There is more chance of neutropenia (low white blood cells therefore high risk of infection) with docetaxel. Since I have already been neutropenic throughout the FEC cycles, this was worrying to hear.
In order to boost the white blood cells, I will therefore be given 5 days’ worth of G-CSF (granulocyte-colony stimulating factor) injections to administer (to myself!) after each treatment. Surprise surprise, they come with a list of side effects, most notably, bone pain due to the bone marrow making blood cells. They can cause headaches as well which I am already prone to at the moment, so that wasn’t great to hear either. There are other side effects which I am hoping to avoid, but we shall see. In addition to the injections, I will be given steroids to take starting on the day before treatment and lasting for 5 days to help prevent a bad reaction to docetaxel. So more sleepless nights to come.
Other possible side effects to look forward to include fatigue, diarrhoea, aches and pains, nail damage, hair loss (including eyebrows and lashes), sore mouth, watery eyes and sore/peeling hands and feet. Oh joy!
We briefly talked about herceptin, which will also start from cycle 4, but the oncologist didn’t feel there was anything too much to worry about. He told me that some people have a reaction to it but that this is quite unusual. As mentioned in previous blog posts, there is also the possibility of damage to the heart but apparently my echocardiogram shows that I have a strong heart. Nice to know my body is doing something right.
They say not to google too much for obvious reasons, however I was sceptical of the fact that there was no mention of any other side effects caused by herceptin. Don’t forget, I will be having this treatment every 3 weeks for a year, so I did google it and found there is a long list of side effects. I won’t list them here but should you wish to see them, they are detailed on the cancer research website:
I’m ploughing through week 2 of cycle 3 and the big difference I have noticed compared to the first 2 cycles is that the side effects are now building up in intensity. Tiredness has felt even more exhausting, sickness has been kept under control only by taking the maximum dose off all anti-emetics, dry patches in my mouth have turned into ulcers and taste changes are becoming harder to manage.
In addition, I have suffered from dizziness, to the point where I was unable to park my car straight. Some would say that’s no difference to normal but trust me, I can do better than that. My eyesight is also affected at times with spells of blurred vision and watery eyes. The worst thing for me has been a severe headache, lasting over a week, coupled with scalp sensitivity. I don’t know if this is down to the cold cap but I suspect it is. I spent the first week after treatment with the sensation that the cap was still firmly attached to my head. Not pleasant.
The good news is that I will no longer have FEC infusions so things are likely to be different in cycle 4. The worrying thing is I have just about got used to managing the side effects caused by FEC and now I need to learn how to cope with docetaxel and herceptin which are next on the menu for me.
In the meantime, I have had my first echocardiogram and the results indicate that I am ready to go ahead with herceptin. My heart will now be monitored every 3 months to ensure that there is no decrease in function. Whether my white blood cells are at the required level remains to be seen, but I am fully prepared that I am likely to have another week 4 in my cycle while my neutrophils increase to the required level.
After another week’s delay as per cycle 1, I was finally able to go ahead and have my third treatment yesterday. My appointment was scheduled for 12pm, so I had that awkward balance of needing time to prepare, yet having too much time in the morning. Frustratingly, the nurses were running incredibly late and I didn’t get called through until 12.30pm. I was however delighted to see I had the same lovely nurse from my last treatment but this time she led me through to the oncology room rather than the much larger and nicer Macmillan unit. The oncology room is unfortunately positioned next to the cafe from which food smells drift through the entire time. Not great when you’re already feeling nauseous.
Whoever told me Tuesdays were the quiet days got it totally wrong. I was surrounded by 10 cancer patients and their partners so the room was full to bursting. My allocated chair next to the cold capping machine and the door to the cafe, was not only ‘the head of the table’ fully visible to everyone but it was also just an ordinary chair as there were not enough treatment chairs to go round. I was in for an uncomfortable afternoon. The nurse was very apologetic about the whole situation, including the time delay and I really didn’t have the heart to complain. They were clearly rushed off their feet.
So the usual routine began with my observations, which were all fine and then the cannula went in. Next I had to go and wet my hair and apply conditioner for another round with the cold cap. The nurse said I was only the second person that she had treated to have retained so much hair. Well done, me! Slight issue at the toilets as another nurse who saw me approaching the cubicle intended for oncology patients only proceeded to tell me I couldn’t go in there, to which I couldn’t help retorting, “I am an oncology patient. I don’t wear this cannula for my pleasure!” Stroppy, I know but she surely could see I was there for treatment since I was wandering around wearing fluffy boot slippers and all cannula’d up. Then followed a hurried drenching of my hair and slathering with conditioner whilst being painfully aware that a queue was forming outside the one and only toilet for the use of oncology patients.
Back to my uncomfortable seat and bag duly unloaded of essentials to see me through my session: hot drink, biscuits, mints, glasses, magazines, crossword book and pen. The nurse returned to fit me with the cold cap, which took some pushing and shoving and I was then attached to the first couple of fluid infusions. The cold cap really didn’t feel right and I soon realised it had slipped over to one side and was literally freezing my ear off. My poor nurse who was having to tend to several other patients at the same time, took a while to return to me to make the necessary adjustment but we got there in the end. I may well end up with an interesting pattern of hair loss this time around.
After a couple of crossword questions read out by my husband (he’s really getting the hang of this now) and a look at some magazines, it was time for my chemo to be administered. As per the last two cycles. I was given 6 syringes of equally horrid looking chemicals, starting with the ‘red devil’ epirubicin. “You remember what this one does to you for the next 24 to 48 hours, don’t you?” The nurse asked me. As if I would forget the disturbingly bright red wee! I had also remembered the discomfort of the chemicals travelling through my veins so we were prepared with the heat pad to cover my arm this time which did help a bit. The chemo went through very quickly and the nurse commented how well my veins were behaving.
Drugs administered, it was time for the long countdown to the end of the cold capping – 90 minutes! Hubby decided a bacon sandwich was in order so he took himself off to the cafe while I read a magazine. I even dozed off for a while. Before too long it was time to switch of the freezing machine and wait for 20 minutes before removing the cap. I was not surprised to see an impressive collection of icicles had formed on my head. Cue looks of horror from the other patients, who must have been wondering why on earth I was putting myself through this. My reasoning, as I said earlier, I have retained a decent amount of hair and when I wear a hat, you wouldn’t know I had lost any.
I didn’t need a massive goody bag this time as I still have plenty of supplies from my previous cycles, so just a box of steroids for me. The nurse also briefly explained about the changes for cycle 4 which is that I will have to come in for Herceptin first. This will take all day as they have to monitor me for any adverse reactions to it. The next day I will come back for the new chemo drug in my regime which is docetaxel/taxotere. This will be given via an infusion and should only take 40 minutes to go through. Cold capping time is also reduced down to 30 minutes before treatment and 30 minutes afterwards. (Hurrah!) In the meantime, I will need an echo scan as Herceptin can cause heart problems. I will be called for further scans every 3 months throughout the treatment.
By the time we got home I had just about enough energy for a light supper, bath and then bed by 8pm. Let’s hope the comedown from the steroids doesn’t turn me into the hulk this time!
This week was meant to be the beginning of cycle 3 in my chemo regime. Unfortunately, my neutrophils were too low again, down to 0.7 this time, therefore my chemotherapy has been rescheduled for next week. As this is now the second time that my treatment has had to be postponed I was a bit more prepared for the phonecall from the hospital on this occasion and I took the news in my stride. Until I went onto the forum to talk to my friends about my delay…then the reality kicked in.
While it is great that no one else seems to have problems with their blood cells increasing to the required level before their chemo session, I couldn’t help feeling a bit hard done by. Why me? This now means I have gone from being one of the front runners among my group of fellow chemo patients, to being one of the last to progress to the next cycle. It may sound crazy but I have chemo envy! Don’t get me wrong, I hate the treatment and the nasty side effects but I so want to get it over and done with. My husband pointed out that it is not a competition, but having a week’s delay (for the second time) just moves the end goal for me. That lovely finish line that I dream about, is being put out of my reach again. Not fair. While my friends on the forum are talking about taking their anti-sickness tablet in preparation for their treatment, preparing a hot drink to help them through the unpleasant cold capping experience, and ticking off another chemo session, I am filling in the extra days of my cycle in my daily diary thinking ‘that should have been me’ and ‘ I should be on day 5 of cycle 3, not day 25 of cycle 2’.
Not only is the end goal being moved further away but the delays are impacting on my more immediate plans as well. Last time I had to cancel some theatre tickets as the delay meant that my immunity would have been at its lowest on the day of the performance. This time it throws a spanner in the works of being able to celebrate my daughter’s 21st birthday in a ‘normal’ way. Looking further ahead, the constant question on my mind is, when will I ever be able to return to work?
I can only hope that future delays will be avoided as the nurse said she will speak to the oncologist about either giving me a week’s worth of injections to increase my white blood cells, or reducing the dose of my chemotherapy. Although this is good news, it does bring up a lot of questions. Do I really want to have injections which can cause horrible side effects according to my friends on the forum? What are the implications of reducing the chemo dose? Does that mean I will have to have more cycles? If not, will it reduce the effectiveness of the treatment?
As always, nothing is straightforward in this epic struggle of trying to eradicate the cancer cells and throwing everything in their path to prevent their return.
I’ve previously mentioned that I get a lot of support from fellow breast cancer patients on the online forum and in this post I am going to share some of the reasons why this is an invaluable resource to me. It comes with a bit of a disclaimer in that some of the content is not for those of you with a prudish disposition. If that’s you, read no further!
The forum is extremely well organised because there is a separate thread for each month of the year for new chemotherapy starters. So all of the people who started at the same time as me set about introducing themselves and sharing a little bit about their particular diagnosis and treatment plan. As you can imagine, we range from people who are younger than me (mid 30s) to people who are into their late 60s. We also have more than likely got nearly every type of breast cancer covered between us. The treatment we are going through is equally varied as a lot of it depends on age and type of breast cancer.
So that was the basics over and done with. What do you talk about next? Most of our chat was unsurprisingly about side effects because these are the bane of our lives. Often we ask each other for tips and advice. Sadly, in the first cycle, several people were struck down with severe nausea and vomiting, which was rectified later on in their treatment by requesting the gold standard anti-sickness medication, which I had luckily already received. Then hair loss started for the majority of us and again we found ourselves pondering over the effectiveness of the cold cap (for those of us who used it) and whether to go for the complete head shave and just get it over and done with. These are the people to whom I can rant when my bathroom floor is covered in hair yet again and they totally understand what I’m going through. These conversations were then followed by photos of our thinning hair and photos of fancy headscarves and wigs.
One side effect which pretty much of all of us are struggling with after each treatment (and here comes that disclaimer!) is constipation. The advice we give each other ranges from eating particular types of food, to taking medication, to any other tried and tested method of being able to ‘go’. So you can imagine the delight when one of us posts something along the lines of ‘There was movement today’. One of my online friends summed things up by posting the following image and then commenting ‘We must be best friends already’.
Side effects is still part of our daily discussions but we have got to know each other as people a bit more (having got the poo out of the way). We have talked about our families, jobs, whereabouts in the country or overseas and more. I have even stumbled across a fellow ice hockey supporter, which is very exciting and we are already planning to meet up at one of the games when her team plays against mine.
Another hot topic (after poo) is food and drink. I’m sure I have bored you all with the weird taste changes that keep happening to me. In my last cycle, I managed to find some hot drinks that I enjoyed since I had gone off tea and coffee, whereas in this cycle I cannot face any hot drinks at all. I developed a craving for Ribena last week (usually I can’t stand the stuff!) and when I went over to my brother’s house, I had a drink of Fanta orange which was the best thing ever. Again, I don’t normally drink fizzy drinks so this took me by surprise as well. So on the forum, we often take to posting pictures of our dinners and drinks with the hope of inspiring one another. One particular lady is very health conscious and keeps us all in check with her healthy recipes.
You have probably gathered the reasons why I find the forum so supportive. We are all in the same boat (of sorts) and it is really good to be able to compare notes on a daily basis. It helps to have people who are slightly ahead in the cycle as they can give insight as to what we can expect next, and it is rewarding to be able to support people who are behind me in the cycle. In addition, we sometimes just have a real laugh at the ridiculous situations we keep finding ourselves in due to having cancer and chemotherapy treatment.
One particular story made me laugh so much and became a real joke in my house so I will share this with you. The lady in question was out for a daily walk, as all of us on the forum try to do, and she saw someone coming towards her with a dog. As the person with the dog approached, my friend stopped to stroke the dog as he had come to a complete standstill. Then, lo and behold, the dog decided to wee on my friends leg! Well, she tried to run away (which was more of a jog in her chemo induced state) and the dog ran after her, still attempting to wee on her. The owner finally caught up with the dog and picked him up, but then the dog weed straight onto my friend, now more in the region of her stomach. How awful! So much for tips and advice on the forum – the only solution for her is surely to wear a wetsuit? Anyway, this then left me feeling a bit nervous when I went for my daily walk. Would you believe it, partway through my journey, I saw a lady who was pushing a pram whilst simultaneously texting on her phone and paying no attention at all to her dog. The dog had walked right up to me and effectively blocked my path so I couldn’t get past. Cue panic mode! I thought about my friend’s experience and decided it was best not to engage with the dog, so I waited patiently (if a little nervously) for the owner to do something. Finally, she pulled his lead and I was able to pass, very quickly, without getting weed on. The unanswered question is, do dogs feel the need to wee on chemo patients?
Whilst not every question can be answered by one of us in our group, we often get a visitor from an earlier thread who is able to advise us. So the community is massive and there are many other opportunities to chat to fellow cancer patients. But what is particularly nice is that our group is so supportive and sometimes downright hilarious. We are hoping to meet up when all of this treatment is out of the way. Until then, we know we are always there for each other and that is a real comfort.
Chemo is tough. Not many people would argue with that. But imagine facing chemo on your own. Fortunately, this is not the case for me, however I have become increasingly aware of people who do not have the same tremendous support that I have. The reason they face the situation they are in ranges from lifestyle choice to quite often a cruel double whammy, where not only cancer has dealt them a blow but nature has taken their partner or other family members away from them.
It is a comfort to have someone who can accompany you to the hospital for treatment. My blog followers will know that I get through my sessions with my husband, who is ready to chat, entertain, fetch drinks and generally lighten the mood. If he were unable to accompany me for any reason, there are an army of family and friends on standby. But it’s not just the treatment itself which makes chemo hard to face. The after effects are debilitating both mentally and physically, and it’s through those times that support is equally invaluable.
Since my last treatment, I have suffered from nausea, tiredness, terrible moods and I cannot decide what I would like to eat and drink from one day to the next. Many things I enjoyed during my last cycle of chemo now turn my stomach. This makes planning incredibly hard and means having to buy things almost on a daily basis to accommodate my everchanging tastebuds. It might not sound like such a big deal, but when you’re zapped from energy and you struggle to just walk around the house, the thought of having to go out to the shops can be just a bridge too far. Again, I don’t face this situation but cannot help feeling increasingly concerned for those people who are left to deal with this on their own.
It was my birthday this week and as with everything else, cancer and chemo threw a massive spanner in the works. For me, it meant cancelling some theatre tickets that I had booked ages ago as I couldn’t risk sitting among lots of people when I have no immunity. It then left me wondering what on earth I could do instead as my normal choice of eating out or having a take away was also not an option this particular week. Even the weather was genuinely unhelpful with Storm Gareth tormenting the UK. However, as it turned out, my day had many special moments thanks to my amazing family and friends.
First of all, my new baby niece arrived into the world 10 minutes into my birthday. What a lovely surprise and surely the best present! Then a friend who we’ve known since our school days arrived with a lovely home made cake, along with a very tasty dinner for our evening meal. How kind and thoughtful. The day continued with a steady flow of messages, post, flowers and gifts which left me feeling truly spoilt. My parents came over for tea and cake, with more lovely presents and by the end of the day I felt I had a good birthday after all.
So as ever, I am truly grateful for the support, generosity and kindness from my family and friends. Never a day goes by without a message or offer of help. It means the world.
After the frustrating delay of an entire week due to my neutrophils being low, I had my bloods tested again last Monday and was happy not to receive a phonecall this time. So it was all systems go for Wednesday. My appointment was at 11.30am which meant the whole day was taken up with preparing, having the treatment and then resting.
Anyway, rewind to the beginning. The car park was pretty full when we arrived and sure enough, the waiting room was equally busy. I was kept waiting for a short while, before being collected by a nurse whom I hadn’t seen before – it amazes me how I have never had the same nurse twice for any of my tests or as it now turns out, either of my treatments. I got a pleasant surprise when I was informed that my treatment was taking place in the Macmillan unit (for all of the patients with blood cancer) instead of the oncology room where I was last time, dedicated to patients with tumours. The Macmillan room was far bigger, friendlier and we didn’t have to sit on top of other patients, unlike the other room. The nurse joked that once you’ve been to this room, you’ll never want to go back to the other room. Well, I can tell you, that is no joke and I may just play dumb next time and walk into the wrong room.
I took a seat in the corner by the cold capping machine and was promptly visited by the people from the Lewis Foundation who had popped in last time with a load of freebies. This time, I opted for the trivia pack which contained a set of question cards, playing cards, boiled sweets and a letter from someone in Australia which is part of an initiative for people in hospital. The letter is meant to reach out to people who may need a friend or cheering up during their hospital stay. The next visit was from the lunch trolley, followed by the volunteer making hot drinks – talk about 4 star service! Then the nurse, who was absolutely lovely, came to do my checks and noticed I was feeling quite hot (not like me at all!) and that my oxygen could do with increasing. I took some deep breaths and that soon increased the level, phew! She commented that I have nice veins, again as we know that is not usually the case, and she set about inserting the cannula.
As I had decided to continue with the cold cap (I’ve probably kept about 50% of my hair) I then had to go and wet my thinning hair and add some conditioner. Once I retook my seat, the nurse set up a saline flush, gave me my steroids and some more anti-sickness medication. I had already taken the ‘Rolls Royce’ version at home that morning and I was now given the ‘Skoda’ equivalent to anti-sickness. Still, I’m not complaining, anything to keep the nausea at bay. Meanwhile, I could feel the saline going up my arm – it felt like I was leaking – very strange!
Then it was time to secure the cold cap. I was surprised to find that I was still a large size, despite losing all that hair. It was less of an ordeal getting the cap onto my head this time and I didn’t feel the same amount of pain as I did the first time. So I settled under my blanket and picked up my thermos cup containing lemon and ginger tea.
Hubby, well trained after the first session, starting calling out the crossword clues. I could join in with reading them this time though, through a stroke of genius on my Mum’s part. When I mentioned that my normal glasses would not fit over the cold cap last time, Mum suggested buying a cheap pair of reading glasses, which I did and this worked a treat.
They say time flies, and it certainly did. I couldn’t believe it was already 1.40pm before my chemo infusions began. Just like last time, the nurse had to sit and administer each injection, starting with Epirubicin. This is the bright red one that makes your wee go red and the evil one that makes your hair fall out. Three of those wretched things were followed by two lots of Cyclophosphamide. This one gives you sinus pain so it helps to suck on a mint. Then finally, Fluorourcacil, which gives off a strange metallic taste, so again a mint is advisable. My arm again went strangely cold and a bit achy. I also noticed a strange tingling sensation in my eyebrows. Whilst these fluids were being given the nurse chatted to us about various things, including her own employment history. Turns out she was a midwife in 1999 when our son was born. We will have a look at his baby book to see if she was there when he was delivered.
Once the chemo was done, the nurse brought me my goody bag, containing anti-sickness tablets, steroids and some mouthwash to prevent the soreness that I experienced in my last cycle. I then turned my attention to the cheese sandwich that I had chosen from the lunch trolley. It really wasn’t worth the wait as the bread had gone limp due to the cucumber and I suddenly couldn’t face the taste of tomato. So that was the end of that. Luckily I had brought some ginger cookies and a nutella bar from home. Hubby raced off to the cafe for his bacon sandwich – wouldn’t be the same if he didn’t. On his return, bacon sandwich demolished, he made me a mint tea (again brought from home) and we continued with some crossword puzzles while the cold cap machine did its thing.
My lovely nurse who had been looking after me very well, suddenly had to make her excuses as the had to meet a patient for a pre-assessment. That left me at the mercy of a nurse who was clearly in training and had never used a cold cap machine before, eek! Between us, however, we worked it out – just switch it off after the allotted time and then wait 10 minutes before removing the cap. This turned out to be a good 30 minutes so there were no icicles left on my head on this occasion. By 4.30pm we left the unit and returned home.
I was extremely tired and already losing my appetite by the time I got home. That just left me to have a light dinner and go to bed. As I was dozing on the bed, I woke up at one point and honestly didn’t have a clue where I was! I can only put it down to the massive cocktail of drugs that had gone into my body that afternoon – scary!
So that’s it – 2 down, 4 to go. All being well, the next one (half way mark) will take place on the 27th March. Let’s hope there are no more delays so this part of the treatment can be out of the way as soon as possible.