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.

Thank you all.

 

 

 

 

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.

 

Today was what my teenage son would describe as a ‘meh’ day. To those of us unfamiliar with this terminology, it means it was not great. Nothing major happened to make me feel this way – I can only put it down to the realisation that I have at least another 4 months of chemotherapy, followed by continuing Herceptin injections, 5 weeks’ worth of radiotherapy and hormone tablets for the next 10 years. Which leads me on to the question of when will my life ever be normal again? And what is normality anyway?

I have been able to remain very positive so far throughout my cancer treatment but today I felt the closest to tears that I have felt in this entire time. I was hankering after my old life, to just get up and go to work, to do something useful, to feel normal. Then it struck me that what I considered to be normal before may never be what life is like after cancer treatment. In fact, going by what many people on the other side of cancer treatment have said, it is very unlikely that my life will ever be the same again. That makes me sad.

So part of the struggles I am facing at the moment includes finding a new normal. The longer this search goes on, the more I have come to the conclusion that there won’t be a singular new normal. 

Currently, normal means getting through each chemo cycle the best I can whilst trying to do at least some of the things that I enjoy. Even that is hard as I am limited to only certain hobbies, mainly those which involve not leaving the house. To be completely truthful, normality during week 1 of chemo means battling every side effect that the treatment throws at me and spending a lot of time huddled up under a blanket. During week 2, normality means feeling reasonably well enough to get up and go out, but knowing that going anywhere crowded puts me at risk of infection. Finally, normality during week 3 means being able to go out but still always being vulnerable to picking up germs – not that different to week 2. In a nutshell, normality means leading a very restricted life, for now anyway.

After chemotherapy, there will be a different new normal which will no doubt involve side effects from Herceptin and radiotherapy. Then after that, the hormone treatment will impact on what is normal for me. At some point, it would be nice to think that I can go back to work and reclaim some of my life back. How that will turn out alongside all of this treatment remains to be seen. I guess I just need to focus on what is happening now: one day at a time.

As I said at the beginning, I was just having a bit of a down day today and I am sure tomorrow will be better. So, how do you cope when you have days like this? Well, I reached out to the Twitter community first – fellow cancer patients who understand exactly what it feels like to have a ‘meh’ day. I wasn’t sure at first whether this would make me feel any better since I don’t know any of these people personally, however I was in for a pleasant surprise. The comments were supportive and kind, and there were some helpful tips to enable me to face this temporary blip. Next I shared my feelings with the Breast Cancer forum. Again, I was touched by the caring comments from my group of online friends who are all going through chemotherapy treatment. I was already on my way to feeling a lot happier.

My day eventually turned out a lot better still when I received a surprise visit from a friend from work. She brought me 2 hampers, filled with lovely gifts from all the staff. The timing of this could not have been more perfect! This totally cheered me up and I now feel I am ready to face tomorrow, not to mention my next chemo treatment, head on.

 

 

 

 

 

Where do I begin?

Week 3 was meant to be a good week where I could perhaps regain some normality. Having spent 2 weeks avoiding everyone and everything, I was delighted to spend some time with family and friends and make up for living the weirdest life during my ‘no immunity’ stage.

Unfortunately, I managed to pick up a sore throat and cough towards the end of the week. I rang the hospital, as per the guidelines given to me, and was told to book an appointment with my GP to get some antibiotics. The cough cleared quite quickly and I was hopeful that chemo for the following week would not be affected.

Then at the weekend, my son became very unwell and had to go off to the urgent care centre. I felt terrible that I could not go and sit with him (due to the high risk of infection). Later on, he told me that they were sending him off to the main hospital for further checks. At this stage I did go and join him as I was terribly worried. Several ECGs, a chest x-ray and some blood tests were carried out which eventually revealed that he has glandular fever. This is awful for him as it can take weeks or even months to recover from this. I am obviously having to keep my distance from him as well.

This morning, I had to go for blood tests to check whether I was ready to take another dose of chemo. I told them I was on antibiotics but this didn’t seem to be a problem as my symptoms had almost cleared and my temperature was normal. However, at 6pm I received the phonecall that I was fearing, telling me that my neutrophils are too low and that chemo will need to be delayed for a week. I was very disappointed as I was mentally prepared for my session tomorrow morning. I will now need further blood tests next Monday and hopefully chemo will happen next Wednesday instead.

Have I learnt anything from cycle 1? Well, I need to be even more careful and avoid crowded places and people who are obviously unwell. I also need to stop planning ahead as I am now completely out of sync with where my ‘good’ weeks are and I was pinning my hopes on a few activities which will now no longer be possible. It is so disappointing but I have to keep telling myself that this is for 6 to 8 months and I just need to keep powering through it.

I am now in week 3 of my first chemo cycle and I am pleased to say that I have felt relatively well. My life has been fairly normal compared to weeks 1 and 2 in that I have been eating most of my usual meals (not with cheese loaded on to everything!) and I haven’t been as restricted with regard to visiting shops, etc. Having said that, I have still been running away like a mad woman from anyone who appears to have even a minor cold.

What has happened in the last few days is some changes with my hair. The first thing that was noticeable is that I didn’t need to go through my usual routine of epilating hair from my legs as there suddenly were none to be seen. Thank you, NHS for the free hair removal!

Less pleasant was the fact that I was running my fingers through the ends of my hair at the back of my head this morning and promptly gathered a tuft of long hair in my hands! As much as I knew this might happen around 2 weeks after chemo, I was still secretly hoping the cold cap had done its business and kept my hair securely attached to my scalp. As the day went on, it became clear that this was not the case.  Each time an episode of tingling in my scalp would precede me being able to run my fingers through my hair and come away with a handful.

It started turning into a weird fascination, where I kept on creating piles of hair all over the place, leading to my husband telling me to stop pulling my hair out! The thing is, I didn’t need to pull – it was just coming away from the roots to the ends. Very strange indeed.

 

Suffice to say, I am not looking forward to my next hair wash as I suspect I might be blocking the drain! I’m not giving in yet though, as you wouldn’t actually notice any difference if you saw my hair right now. Maybe I can hang on to the rest of it. Only time will tell.

 

 

To be continued.

Update to the hairy story

It has been 5 days since my hair started to fall out. Here is what happened next. The day after I wrote this, my hair was still coming out at intermittent times but not as abundantly as it did on the first day. I started hoping that was the end of it. Then after 2 days, it was due a wash and this is what I was dreading as I was certain I would be parting company with the majority of my hair. However, the hair loss I experienced whilst showering was similar to the amount I used to lose when my hair was long, so there was no need to panic. Later on in the day, however, the hair was literally falling out of my head at regular intervals. Oh dear. At this rate, I would be needing that wig sooner rather than later. In fact, that’s exactly what I set out to do that day, by  getting on the phone to the salon and ordering a few different styles to try.

Then followed another couple of days where my hair was coming out in quite big clumps at a time. I kept on gathering the hair and showing it to my husband, son and daughter (who was home from uni for a few days). Their reactions varied from telling me to stop pulling out my hair to telling me it was OK and not to worry. I could tell they found it quite hard to witness as much as I was finding it hard to deal with.

Today was my second hair wash after the falling out stage and by far the most amount of hair loss occurred as can be seen in the picture below. This has resulted in my hair feeling very thin and my scalp being visible in places. I am not sure this is a look I can endure for much longer. Not to mention the fact that it feels very vulnerable – I had no idea how much protection my hair offered until now. Nevertheless, I am not prepared to go for the head shave as many other people in my situation would be inclined to do at this stage.

So today my Mum and I went back to the salon where I had tried on some wigs 3 weeks ago. I had seen a couple of shorter styles online and I thought it wise to try them before making a decision. As it turned out, after trying on some quite nice and some not so nice styles (imagine poor quality fancy dress and you’ve got the picture) the one I favoured 3 weeks ago was the most like my own hair and therefore the winning choice. We will return later in the week to make the final decision.

In the meantime, I need to dig out those headscarves I invested in a couple of months ago.

 

One of the more surprising side effects of chemotherapy has definitely been the impact on my tastebuds. I knew I should expect a period of time where I would feel very nauseous and I am pleased to say I seem to have passed that for now, but I wasn’t prepared for what followed. Strangely, since then, as I explained in my previous post, I have been developing strong cravings for certain foods and my poor family simply have to follow suit! During the first week after treatment, it was all about cheese and I didn’t get through a single day without having this loaded on to whatever I was eating. So much so, that I was waking up several days on the trot, commenting to my husband that I was having really mad dreams all night, to which he drily observed, “That will be the cheese.”

Moving on to week two after treatment and I find I am able to vary my diet quite a bit. Cheese is still involved but there are many different meals that I now fancy. My husband and son tend to take on a worried look, usually around the time we are having dinner, as I announce what my next ‘must have’ meal is going to be. Hubby in particular, who is not known for being adventurous with his food choices, tends to react with an, “Okay…we could have that…” On the plus side, we have gone away from our fairly standard pattern of chicken fajitas, Hunter’s chicken and chips, a pasta dish, a toastie…then the obligatory take aways of course (because it’s the weekend and why should we cook?) Now we have such a range of menus, we could give Gordon Ramsay a run for his money.

So this week we tried our hand at making butter chicken from a friend’s recipe, and it was delicious! My husband (the fussy one!) commented that this was marriage material. Good job since he is now very much stuck with me!

On another day, I was in the mood for some Mexican flavours, so we made quesadillas, avocado dip, tomato salsa and nachos. Extremely tasty, if I do say so myself.

For tonight’s offering, because it’s Valentine’s Day, I opted for a steak baguette with chunky fries and onion rings.

Who needs to dine out when you can have all this at home? We all know I love going to restaurants as much as the next person but I guess the variety of meals my cravings have steered me towards is making me feel a bit better about the temporary restrictions on eating out.

Having said all that, don’t sign me up for Masterchef just yet, but be assured that you might be in for a surprise if you come and dine with us over the coming months.

Happy Valentine’s Day!

Right now an update seems appropriate having got through the first week post chemo session 1. If you’ve read my previous post, you’ll know that I was given an infusion of FEC for my first cycle, and that I was given several anti-sickness meds (Emend, Ondansetron and Metoclopramide) as well as steroids for the first 3 days after treatment. The best way I can describe how I felt straight after my treatment was that I felt like I was jet-lagged but without the benefit of the holiday.

In summary, my side effects have included:

Nausea

Yep, despite the hospital’s best efforts,  I still managed to feel pretty queasy for most of this first week. Having said that, I haven’t been sick, so all warnings of having chemo and needing a bucket close by were not needed (thank goodness!)

Constipation/diarrhoea

Whoever said one can quickly turn into the other was spot on. Nothing else left to say on that one.

Tiredness, in fact scrap that, exhaustion!

I already suffer from an underactive thyroid so I know all too well what exhaustion feels like, but this has been on another level. I have had to break up any activity (ironing, unloading the dishwasher, etc.) into tiny chunks with a sit down in between. This is no exaggeration. If I were to stay on my feet, I would fall over. I have coped by giving in to day time naps whenever needed.

Taste changes/cravings

This has been so weird for me as I didn’t really experience this throughout either of my pregnancies, yet it has really hit me now (and I’m not pregnant!). I currently can’t stand the thought of tea or coffee. That is a shocker for those of you who know me as I usually can’t get past 10am without a coffee and I tend to drink around 8 cups of tea per day. As for food, I have had to stick to fairly bland stuff, like potato with cheese, pasta with cheese and crackers with cheese. The theme is definitely cheese! I crave it every day! This isn’t unusual for me but I am normally a bit more adventurous with my diet! I have also noticed that I can suddenly just fancy eating something, for example, cheese (!) and pineapple and then I have to have it as soon as possible. Very odd!

Aversion to smells

I am currently intolerant of even the nicest smells. No perfumes for me! I’ve had to change handcream about three times as I can’t cope with the smell of my other ones. The washing smells too strong. You name it, I hate it. As for bad smells, well, let’s not even go there!

Dry mouth

So far this has happened at night time particularly, but this morning I noticed dry patches in my mouth. I have tried biotene toothpaste, mouthwash and drinking copious amounts of water. The most effective remedy for me is in fact pineapple juice with lemonade. I can see my sugar intake rocketing at this rate.

Feeling wobbly/weak/light-headed

This side effect comes second after nausea for being the most annoying for me. I have to pace myself so much and sit down regularly. Not really in my nature!

That just about sums up what I have experienced so far. If you are going through chemo treatment, you may find it’s completely different for you – it all depends on the drugs used and the way we respond as individuals. On the other hand, you may be able to relate to some of the weird stuff that has happened to me this week!

The Breast Care nurse suggested I would probably take a big nosedive after finishing the steroids, and she was very accurate with that. Saturday and Sunday (days 5 and 6) were by far my worst days. I managed a walk today which I take as a sign that things are looking up. Having said that, my immunity is now supposedly at its lowest so I shall be running a mile (slowly of course, as I can’t even walk fast at the moment) from any coughs, sneezes and other lurgies!

Luckily, as ever, I have been surrounded by a brilliant support network: meals cooked by my Mum, messages and visits from family and friends and the fantastic Breast Cancer Care Forum community, who are always ready to answer questions. It’s good to be supported as it certainly hasn’t been a normal week in any way – I couldn’t even make it to the ice hockey.

Let’s see what the next week brings.

 

The day finally arrived where I would join the chemo train, which for me was a step in the right direction towards getting my life back. I felt like I had been waiting for this day for so long, but now that it was here, I was certainly feeling less keen.

My appointment was at 10am, so that gave me time to get up without rushing around, prepare a snack to take with me and take the anti-sickness medicine and some paracetamol to help me through cold capping. We arrived to a fairly busy waiting room but I was whisked straight through to the room where I was to start my treatment. There were just 3 patients having chemo, 2 of whom had their partners with them, so it was quite calm. There were 2 nurses on duty and there were regular visits from a volunteer who was offering us all hot drinks.

The nurse who looked after me was an agency nurse and therefore quite new to the hospital, having been there since September. She set about checking my blood pressure, only to find that the machine wasn’t working, therefore resorting to counting my pulse rate the old fashioned way. Next, a temperature check with an ear thermometer which I am glad to say was working well as I would have hated to have this measured the old fashioned way! Then the nurse asked if I had taken my anti-sickness tablet and my steroids. I informed her that I had not been given any steroids at which point she fetched me a dose to take there and then, warning me that they are likely to keep me awake at night. Wonderful!

As my checks were fine, the cannula needed to be inserted with a steady flow of saline attached to it. My brilliant veins from Friday were nowhere to be seen so the nurse had to supply me with a heated pillow to see if they would put in an appearance. Then it was time to prepare for the cold cap. I was told to go and wet  my hair and apply conditioner. Luckily, I had brought my water spray as I would have struggled to wet my hair without drenching the rest of me at the same time. Job done, we then needed to select the right size cap. I assured the nurse that I have a big head. Nevertheless, she proceeded to try a medium size on me as there should not be any gaps. Turns out I was right and I do have a big head. So a large inner cap was needed and this took some pushing and shoving to get it to sit on my scalp correctly. Then the outer cap (also large!) was strapped tightly to my head with a chin strap which severely restricted the movement of my jaw. I had a headache before the machine was even switched on! Once the cold came through, the first 20 minutes were indeed pretty painful and very cold. My blanket certainly helped, as did my cosy slippers.

Since the cold cap needed to be on for 30 minutes before treatment, distraction was needed to stop me thinking about the horrible sensation in my scalp. I couldn’t wear my glasses because of my new head gear, therefore reading wasn’t an option. My ears were covered up, so listening to music was also out of the question…Oh dear! Husband, this is where you come in handy…wait, he was in his own little world. Of all times!

“Read me some clues for this crossword puzzle!” I pleaded.

He sheepishly took the puzzle book, read the first clue to himself and then proceeded to write down the answer! Seriously! I told him he was meant to read them out to me so that I could join in! Finally, he got the idea and we tried to solve a few clues. My brain was obviously being affected by the extreme cold as I was struggling to think of the answers – This, coupled with my husband’s dodgy spelling led to us falling about laughing, much to the bemusement of the other patients. Hubby continued to show his lack of experience of doing crosswords when he read out a clue which was followed with ‘INITS’ in brackets and he asked me what that meant. I told him it means initials. “Oh!” said my husband, “I thought it meant innit!” Well, if I wasn’t crying before, I certainly was now! Things took a turn for the worse when one of the more mature ladies opposite me had a phonecall  and for some reason I found her lively disco ringtone very amusing. I did wonder if the nurse had given me a good dose of laughing gas as the tears were streaming down my face! Mission distraction: Achieved!

After a while, we composed ourselves and the calm atmosphere was restored. I had brought along my coffee in a thermos cup but oddly enough, was not enjoying this very much. Don’t tell me I am going off coffee! Shocking! I didn’t much fancy the ginger cake I had brought along for my snack either.

After half an hour, the nurse returned with a trolley and a big tray of syringes. She and her colleague double checked all of the drugs and my personal details. I was also asked a range of questions to check that my vital organs were all in good working order. Then the treatment started. The nurse injected  three lots of epirubicin first which was bright red and would come out later the same colour it went in (apparently). This particular drug turned my hand and arm very cold so I was given the heated pillow again to warm me up. Next, one lot of  fluorouracil and for this one, the nurse advised me to suck on a mint to prevent possible sinus like pain. I could actually feel it working its way up through my veins which was weird to say the least. Finally, two lots of cyclophosphamide, and my infusions were done. Unfortunately, the cold cap wasn’t done yet as it needed to stay on for a further 90 minutes.

During this time, I was offered a sandwich and some juice, as was my husband but I told him he had earnt his bacon sandwich from the cafe on this occasion. Eating a sandwich with restricted jaw movement was slow but I wasn’t going anywhere soon so it was fine. I tried to read my Kindle by enlarging the text but it was quite blurry without my glasses which didn’t help my headache. As soon as hubby returned, we continued with the crossword. I was becoming increasingly in need of some more paracetamol but I had to wait another 40 minutes before I was due another dose. Painful!

Eventually (those last 40 minutes did drag!) the nurse switched off the cold cap, telling me that it needed to stay on my head for another 5 minutes while it warmed up. Removing it straightaway would have defeated the object, as my hair would have literally been ripped off my scalp. I was allowed to loosen the chin strap which was a bit of a relief at least. When the cold cap was removed, I was left with a few icicles on my head. Good job I had my woolly hat to wear on the way home. My head quickly became very hot which was a welcome feeling.

Just before we left, there were some visitors from the Lewis Foundation, which is a charity I hadn’t heard of. They were very kind, offering each patient a goody bag of their choice. For me, it had to be the one with the puzzle book, our new hobby, and a bag of sweets.

I left the hospital with another goody bag from the nurse – this one filled with anti-sickness meds and steroids to be taken over the next few days. So my appointment lasted a good hour and a half longer than I had estimated, but it was done. My next chemo is due to take place on a Tuesday again, which the nurse informed me tends to be the quiet day – Hurrah for Tuesdays! Before that I will of course have my bloods checked and go for a chat with the oncologist.

One chemo down, 5 to go.