Radiotherapy week 1

Radiotherapy was due to start on Monday at 8.40am however at 7.40 I received a phonecall to say there was a problem with one of the machines so could I come at 9.45 instead? I was fine with that but wished I’d known as it would have allowed me an extra hour in bed. So just under an hour later, we made our way to Genesis Care, which is a private hospital here in MK. Unlike many people in other locations, my journey to radiotherapy will take just 15 minutes each day.

Shortly after I arrived I was shown to the changing rooms to put on my stunning green gown. Then after a few minutes the radiographer came and took me to the treatment room where another radiographer was waiting for me. The bed was the same as the one they used for my CT scan but the equipment was much  more substantial. On the ceiling there were 4 projectors, of which 3 were beaming bright red lights and one was projecting my personal details onto a screen. Over the bed there was a circular piece of equipment with screens either side.

After confirming my personal details I was asked to lie down on the bed with my arms stretched above my head. The radiographer talked me through the process and reassured me that none of the equipment would touch me although it would move around at various stages. There was a small monitor above my head with a little line that showed my breathing. I was asked to do a practice breath hold and could see whether I was doing it correctly by the position of the line. It turns out that a ‘correct’ breath hold is not at full lung capacity which actually makes it a bit more tricky.

Having explained everything the 2 ladies left the room and I was left with the equipment  moving around me and making noises as it repositioned itself. I was told that they could see and hear me so I could let them know if there were any problems. The radiographer then instructed me when it was time to hold my breath and this was repeated around 5 times. Each time I started to wonder if I would ever be allowed to breathe again, but then her voice would announce, “Breathe away normally.” After around 5 minutes, the radiographer came back into the room and told me I was done. It was as simple as that. All in, the procedure took around 15 minutes.

From Tuesday to Friday, the same treatment was repeated and appeared to get done more quickly as there was no need for them to explain everything to me again. Radiotherapy, compared to chemotherapy, is very easy and pain free.

In terms of side effects, I started to feel very tired, in fact downright exhausted, right from the first day, however I wasn’t sure if this was due to me having to get up early every day. One thing was for sure, I needed a nap by the afternoon. I mentioned the tiredness to the radiographer and she confirmed that it was a result of the treatment. Fortunately, I didn’t suffer any skin soreness during week 1 but I was ready with a bottle of Aloe Vera gel in the fridge just in case.

So, 5 sessions down, 15 to go and 2 rest days before it all starts again. Let’s hope my skin continues to be good.

Radiotherapy Planning

Having completed chemotherapy, it was time to start thinking about the next stage of my treatment which is radiotherapy. The first appointment was with the consultant at the hospital where I was given a brief run down of the plan. I was told I would have 20 sessions of radiotherapy over 4 weeks on Mondays to Fridays. This will take place at a local private hospital so no long journeys nor issues with parking. The doctor explained some of the side effects to expect, such as tiredness and sore skin. I wasn’t given a start date at this point but was told it would be 4 to 6 weeks from my last chemo session. The doctor and breast care nurse in attendance made it clear that I must wear factor 50 sun protection as well as cover the affected area (which will be right up to my collar bone) when I am out in the sun. They advised that I should avoid  swimming for 6 weeks after finishing treatment. This was disappointing to hear as I had hoped to have a holiday to recover from this nightmare. So I left the appointment feeling a bit down.

I was invited to attend my CT scan and planning appointment 10 days later at the private hospital. Everyone who had been there told that me this place was wonderful not least because you get free tea and coffee. As with everything else in life it would have been better if no one had said anything as my first experience wasn’t fantastic. First off, I was kept waiting for 40 minutes as there seemed to be some technical problems that day. It turned out that all of the radiotherapy equipment was broken and the staff were having to turn people away and send them off to Cambridge or Oxford. The patients were however provided with a taxi which was good. Unfortunately one poor lady who was there for her first session had to go back home and was told to come back 3 days later. So it was all a bit chaotic that day but true enough, there was coffee and tea and there were various snacks available.

When I was called through by one of the radiographers, things picked up considerably. We were taken to a comfortable room with sofas and she went through lots of information with us. I was given a start date of the 8th July and timings of my 20 radiotherapy sessions, along with a review appointment in between. The method of radiotherapy to be used is called ‘Surface Guided Radiotherapy’ and I was told that this method eliminates the need for tattoo markers. The radiographer explained that in addition, the ‘Image Guided’ technique means that the position is checked at every session so that the dose is always delivered accurately to the exact treatment site. I was told about the side effects again, as well as ways to cope, such as moisturising, light exercise and plenty of rest. I asked again about swimming and I was given quite a different response this time. The answer was maybe leave it a couple of weeks and then as long as my skin is not inflamed, I can swim but must rinse off chlorine as soon as I leave the pool. So better news this time. I suppose the difference in reponses from the consultant and the  radiographer is down to the fact that everyone is different and no one can tell how my skin will be affected until the treatment has been completed.

Next it was time for my CT planning scan. I was taken to the changing room where I was given a gown of superior quality to the usual ones, where you’re never quite sure which way round they should go and you invariably find everything hanging out. The gown is mine to keep for the duration of my radiotherapy so I have added it to my wardrobe for now. In the CT scanning room there were some questions to answer and then I was asked to lie down on the bed for the scanner. The 2 radiographers proceeded to measure where the beams would need to do their work – it really is an exact science. They were using rulers and quoting measurements, such as E8, while I had to lie very still with my arms above my head. Since radiation will take place on my lefthandside I will need to use the breath holding technique as part of my treatment. This is to reduce the risk of any damage to the heart. What followed next was several practice runs of me holding my breath for 30 seconds at a time. The radiographers were checking that my ribcage was in the exact same position each time. No pressure! I was marked up with pen and sent through the scanner while the 2 ladies noted down all of the information.

That concluded the planning appointment and I was free to go. Here’s hoping all of the equipment is fixed before my start date!


The last chemo!

I’ve never been more excited to have my chemo treatment than I was today. I was due my last Docetaxel and cold cap session so I had plenty of reason to be happy.

I arrived at 11am, leaving hubby circling the car park which was inevitably full. Today’s seat was next to the window. By 11.15am all my checks were done and everything was looking promising despite the burn on my arm caused by an incident with the oven. Oops! I was a bit worried it would affect my cannula but fortunately, other veins were willing to play today.  This was most likely due to the fact that I was given a heated pillow to plump them up. I have to say, what with the heating on my arm and the tremendous dose of steroids, I was feeling rather hot and sporting some rosy cheeks.

By 11.25am the cannula was in and the IV flush was started. After a swift start, I was disappointed to hear that the Herceptin hadn’t arrived yet. That left me sitting for a while reading to pass the time. Finally at 12.25pm the Herceptin had arrived and I was set up with my infusion. I was told it would take half an hour to go through but by 1.20pm I still hadn’t received the full dose. I decided to eat some toast and then was told I could prepare my hair for the cold cap. Typical!

So I duly set off for the bathroom and went through the hair wetting and conditioning routine. When I returned to my seat I was told again that the cold cap may be very uncomfortable as my hair is now so thin. Luckily I was prepared as I had contacted Paxman (the cold cap manufacturer) and they kindly sent me a theatre cap and some complimentary unscented shampoo and conditioner. It was a good job I wore the theatre cap as it made the initial freeze a lot more comfortable. Also, having started out with a large cold cap for my large head, I have now shrunk to a more ladylike small. Turns out my big head was all hair! Anyway, at 1.45pm I was all plugged in and needing some distraction from the freeze.

By now, my daughter had arrived to join the party so she got to see the glam look. She timed it well as the drinks trolley was just doing the rounds. At 2.25pm my Docetaxel was started. Then time seemed to grind to a halt as there was a constant air bubble in my infusion leading to a very lengthy session indeed. At 3.55pm the Docetaxel had finally gone through which was a good job as I was suffering from a severe headache and nausea. I think the small cold cap was perhaps a bit tight on me after all. I still had to hang in there as I needed a final IV flush and 20 minutes of wearing the cold cap. I was struggling by now and thinking I will certainly remember my last chemo.

At 4.40pm I was all done. As it was my last chemo, I got to ring the bell, accompanied by all the lovely nurses who have looked after me. I handed them some well deserved goodies and left the unit to go home. Our son had been to collect takeaway pizzas so we had a treat to celebrate the end of chemo.


Treatment is far from over though. I will be back in the unit in 3 weeks for my next Herceptin session. This will be given via an injection which takes 3 to 5 minutes but for the first one I need to stay in for 4 hours in case of any reaction. The one after that will still be at the hospital with 2 hours of monitoring and then I will be visited at home every 3 weeks until April 2020. In the meantime, I am also waiting to hear from the radiologist to discuss my treatment plan for radiotherapy.

Nevertheless, I am so glad the chemo stage is over and I no longer have to endure the cold cap. Having said that, although the cold cap wasn’t the most comfortable experience, I am so pleased it has left me with some hair.

I will now need to get through the next couple of weeks and hope that the side effects are mild but at least a major step is out of the way.

Chemo 5: Docetaxel & Herceptin

I was most surprised to find that chemo was going ahead for me yesterday as I would have bet that my neutrophils weren’t ready for this next dose. I was pleased not to get the phonecall on the Tuesday night and set about preparing for my daytrip to the hospital.

My appointment was at 10am and I arrived to a fairly empty waiting room which is unheard of. Normally, the majority of seats are taken and there are people queuing down the corridor. Not this time, although it turned out not to be a good sign of things to come. I hung around the waiting room, reluctant to sit down as I knew I would be seated for a lengthy time during my treatment. Finally, at 10.30am I was collected by an apologetic nurse who informed me that she was having a very busy morning. She advised me that my drugs hadn’t actually arrived yet, which wasn’t any consolation to me at all.

I took a seat in the oncology suite and read for a while until the nurse came back to insert the cannula. I showed her my vein damage which has become more obvious since my blood test so she had a bit of a battle trying to find a suitable non-damaged vein. We got there in the end and we talked about some of the side effects which I had suffered from during my last cycle. Although she was very sympathetic, she informed me that it probably wasn’t worth mentioning to the oncologist as they have never had to endure this and therefore would be unlikely to reduce my dose for next time. Great!

Cannula position is creeping up my arm due to vein damage.


The good news was that those 3 injections to boost my white blood cells had clearly worked as my blood count had gone up to 9, compared to 2.9 from last time. My neutrophils were at 4.9 which is also well above the minimum of 1.5 in order for treatment to go ahead. All other checks were fine too, so I was good to go. Unfortunately, my drugs were not, as they still hadn’t appeared by 11.30am. My nurse was rushed off her feet with other patients and by now there were 10 of us being treated, as well as constant blood tests going on.

There seemed to be no volunteer on duty doing any food orders, so luckily my husband was able to take on this mission and he brought me some toast for lunch. Anything to avoid the soggy sandwiches which still haunt me when I see that lunchtime trolley! In due course, the trolley did make its way around the unit and I took the less offensive items such as jelly, crisps and a banana. By now, the hot drinks service had been round twice but what was the betting it would be nowhere to be seen when I needed it for my cold capping session?

Just before 12pm, the nurse told me that my Docetaxel had arrived (Hooray!) but there was still no sign of the Herceptin which they wanted to administer first. Apparently the pharmacy were short staffed so there was nothing they could do to speed things up. I passed the time by browsing on my tablet and reading a book. It already felt like a long day and so far I had only been hooked up to a saline infusion.

Finally, at 12.50pm my dose of Herceptin was started and I was asked to go and prepare for the cold cap. Having put conditioner on my scalp, then followed an issue with cap sizes. Turns out I am no longer a large. I guess the hair loss has led to me having a more ladylike medium head. I hurriedly took 2 paracetamol to prevent the painful headache but was still hit with an intense pain as soon as the machine was switched on. The nurse said that if I was to lose any more hair between now and next time, I may not be able to use the cold cap. I told her that I have read on the forums that in such instances people wear a theatre cap to protect the scalp. She said she had never heard of that. I do wish the nurses were better informed with the whole cold capping thing. My search for a theatre cap commences here because I have not done all this hard work for nothing!

With treatment underway, there was nothing to do other than read and sit it out. Around 45 minutes later, Herceptin had gone through and I was hooked up to the dreaded Docetaxel. By 2.55pm the Docetaxel had gone through and I was ready for my final flush of fluids. The cold cap needed to stay on for another 15 minutes and I did feel by then that it had been on for a long time. At 3.15pm, hubby and I removed the cold cap as the nurse had received another influx of people ready for treatment and was going to take some time to come and relieve me of the pain. I then sat with my woolly hat on waiting for my cannula to be removed. The nurse eventually made her way over to detach me from the tubes so that I could leave the unit. But I wasn’t done yet. I had requested some more mouthwash since I had suffered so badly with mouth sores during cycle 4 but the only way I was getting anything from the pharmacy was to either wait half an hour (no thanks!) or go and collect it myself. I opted to make my way to the pharmacy and finally escaped from the hospital at 3.45pm. What a long day!

By the time I got home, I was exceptionally tired and just about managed a light meal. I was in bed by 7.30pm. Not that I slept many hours at a time but at least I could rest and recover from what turned out to be a very hard day. Seems like the tiredness is also impacting on my husband who didn’t even have the energy to fetch himself a bacon sandwich on this occasion.

Now I need to make the most of the steroids today, before the inevitable crash tomorrow. I know from last time I will be in for a difficult week but at least I am armed with medicine and my bed. The good news is there is now only 1 more Docetaxel to go and then I can move on to the next stage of my treatment.

Docetaxel week 1: The world’s worst hangover!

I feel like I am emerging from the world’s worst hangover at the moment. It has been one tough week. Side effects from Docetaxel are completely different to what I experienced with FEC. This coupled with the effects of medication have left me feeling like I am trying to wade through quicksand after a night of heavy drinking. I have certainly got even more understanding now of what people endure if they are suffering from chronic fatigue and pain.

Let’s start with the steroids. So this time I had a double dose of these which truly wreaked havoc with my sleep. There is nothing worse than lying awake for 2 hours at a time but being too tired to do anything. Even reading was too much of an effort so I was left with no choice but to just lie there, bored. Fortunately I only had steroids for 3 days so this problem was soon resolved as exhaustion took over and I slept a lot more.

Next came my first encounter with the white blood cell boosting injections. I didn’t realise these were given in such varying doses. Some of my friends are on 7 per cycle, some on 5 and then there was me on only 3. Not that I’m complaining though because they are unpleasant to say the least.

On the first day of having to administer the injection, I was slightly nervous despite plenty of people telling me that it doesn’t hurt. I took the injection out of the fridge and set the timer on the cooker to let me know when it was ready. All high tech stuff! It was so disappointing to have the timer go off and not have something nice cooking in the oven, just a dodgy injection to use. Anyway, where was I? Oh yes, when the time came to do the dreaded injection, I made sure to pinch as much flab as I could and left the task to my husband. All I can say is Ouch! Was that supposed to hurt? Because let me tell you, it did.

Onto the forum I went with my tale of woe. What did I do wrong? Don’t pinch your skin too hard, came back the advice. Try injecting at an angle. OK, day 2 was going to be better, surely? This time I opted out of pinching my own skin and left the entire deed to my husband, who did a much better job, and I came away almost pain free. Phew! What I will say is that the after effects soon kicked in, leaving me with hip pain and a stomach ache. Oh well, only one more and that would be all for this cycle.

They told me the needle was small!

Having survived the first obstacles, the delayed side effects from my chemo popped along to give me something else to think about. I had studied the list of possible side effects several times and was clear on the fact that not everyone gets all of these. So I was fairly optimistic and thought I might be that person who sails through. Wrong!

By day 4 I was learning the effects of Docetaxel first hand. It started with a complete lack of energy so a day on the sofa was on the cards. On day 5 I was hit with everything from terrible pain, to a borderline high temperature (37.5 which is the signal to call the hospital for advice), shivers and sweating, to bland tastebuds, a sore throat and an extremely dry tongue. Imagine a heavy dose of the flu and you’re partially there. On that morning I was sat in the bath having a complete Bridget Jones style meltdown (minus the cigarettes and alcohol) while my poor husband was wondering what he could possibly do to stop the floods of tears. One positive thing was that I didn’t feel nauseous like I did with FEC however I seemed to be treated to everything else going.

Day 6 was the ultimate low with me not even having the energy to get dressed. That is a first for me. What could I do but just let it run its course, except I had no idea how long I would feel like this. It seems the side effects are not willing to depart any time soon as I am now on day 8 and there is only a mild improvement. Having said that, I am happy to report that the beast which took over my personality for a few days has done a runner – for now anyway. Oh the joys of being filled with poisonous chemicals!

Still, the light at the end of the tunnel is there and I need to keep reminding myself that this is just a temporary blip. I am dressed and made up today – What an achievement!

Chemo 4 Docetaxel/Taxotere 1

Continuing with the holiday analogies, today’s chemo session was like a short haul flight compared to yesterday. I was scheduled in for 12pm, which left me a nice slot of time in the morning to go for a walk and to deliver some Easter goodies to my school for my class, who had sent me the most lovely Easter card. I was slightly taken aback that one of the members of the office team didn’t recognise me at first. Reality check as to how chemo has taken its toll on my appearance.

We arrived at the hospital just in time again. It seems like the traffic is heavy no matter what time of day we travel. Upon checking in at reception, I was delighted to hear that my favourite nurse was looking after me today. No chair reserving rush today as it was clear that my seat was in the corner next to the wonderful cold capping machine. Once I had made myself comfortable, it was time for my obs which were all good. Then the cannula was inserted, a bit lower than yesterday, towards my wrist. I will truly resemble a pin cushion before long. I was then surprised to hear my name being called, and when I looked up I saw a lady who I had met last week at a local cancer support session. She is on exactly the same regime as me and it was lovely to see her. Today was her first Herceptin so I was able to give her the lowdown on how I had got on. Luckily for me, there have been minimal side effects so far, just some itching which I am told should ease with anti-histamine. Oh, and a very red face no doubt caused by the double dose of steroids I had consumed.

My next job was to go and wet my hair and apply conditioner in preparation for the cold cap. My lovely nurse had remembered that I require a large inner cap and large outer cap which were duly placed on my (large) head. The machine was switched on and the headache kicked in instantly, despite me having taken 2 paracetamol on arrival into the unit. Oh well, no pain, no gain. I was given a saline flush, followed swiftly by my first dose of Docetaxel/Taxotere. No hanging around today! I distracted myself by chatting on the forum on my tablet but then I noticed an incoming email from my friend sitting opposite me. She had sneakily taken a photo of me looking stunning in the cold cap and had sent it to me! Lovely.

Stunning picture courtesy of my new friend!

Hubby was sent on a mission to buy me some Lilt from the cafe, no noodles needed today. In fact, I didn’t really need any food or even have time to eat as the process was so much faster than yesterday. Docetaxel takes an hour to infuse, then after that I was given another saline flush and the cold cap remained in place for 20 minutes longer. That was virtually me done.

As mentioned previously, the neutrophils are even more likely to drop with this treatment so the nurse brought me my 3 days’ worth of white blood cell boosting injections and gave me a whistle-stop tour on their usage. Luckily, my friend sitting opposite me knew the ropes and was able to give me some top tips. Apparently, it is best to take the syringe out of the fridge 30 minutes before it is needed as this will make it less painful. I was told to grab a good inch of my tummy and then inject myself with the needle going in sideways. My friend said I should alternate the sides I inject, again to stop the injection site becoming too painful. So this starts tomorrow and let’s hope it prevents delays for the next 2 treatments – my last 2 visits to the oncology suite!

We were home late afternoon, enabling me to settle down to some more crochet and a takeaway pizza. A quick evening walk and I was ready for bed. Might as well get some sleep before the steroids wake me in the middle of the night.


Herceptin 1

With the Easter weekend causing my schedule to change, I went for my blood test on Tuesday and was waiting for the phonecall at 6pm telling me that my neutrophils were too low again. No one was more surprised than me when said phonecall didn’t materialise and I found myself with the reality of going ahead with treatment on time. My reaction: Eek! I had actually been looking forward to having an extra week of feeling quite well and being able to do some normal things but it wasn’t to be. On the plus side, my chemo treatment was finally speeding towards the finish line. Woohoo!

So Tuesday after dinner I set about packing my bag in preparation for my first dose of Herceptin, which I had been told would take about 90 minutes to infuse, followed by at least 4 hours of monitoring for any adverse reaction. I knew I was in for a long day and would need plenty of options to pass the time. Food was tricky as I wasn’t sure if I would want to eat, and if so, what I would even fancy. I settled on some dry crackers, a chocolate bar and some popcorn. The rest I would have to buy from the cafe as I have taken a strong dislike to sandwiches ever since treatment number 2 and the soggy sandwich.

I was booked in for 9am so I estimated I’d be done by 3pm. We arrived in true style at 9am on the dot thanks to the ever increasing traffic jams on our main route to the hospital. As it happens, we needn’t have rushed but this only became evident later on.

The nurse called me through (not my favourite nurse from cycles 2 and 3) but a very nice lady nonetheless. The first thing she revealed was that my neutrophils were actually too low yesterday at 1.3 so they would need to repeat the blood test this morning and hope they had increased. I knew it was too good to be true. On the plus side, being one of the first customers of the day, I was able to choose the exclusive window seat. I felt a bit like I was on a sunbed reservation mission as you do when you go to busy resorts abroad, almost breaking into a run to secure my favourite spot. Anyway, mission accomplished. I’ve clearly had too much practice at that.

The first attempt at cannulating was messy to say the least but attempt number 2 did the trick thankfully. I dread to see the state of my hand in a few days’ time. Bloods taken and fluids started, I settled down to some reading. By 9.40am there was no sign of the elusive Herceptin, however I was given steroids in preparation for tomorrow’s Docetaxel treatment. I took 4 and was told to take 4 more before 2pm to avoid lying awake all night. A short while later the news came that my neutrophils were up to 2.3 so treatment could definitely go ahead, phew!

However by 10.40am there was still no sign of my medication despite a phonecall to the pharmacy who insisted they had lots of drugs there. The joys of the Bank Holidays! In the meantime, the unit was filling up and hubby was trying his best to ‘work from home’ on his laptop while being sandwiched in between me and the next chemo patient along. I was starting to feel hungry so I ordered some toast from one of the lovely volunteers. Free food and a good view from the window. It’s the little things.

The lady next to me was having FEC treatment which I couldn’t look at without feeling queasy so I distracted myself by playing Duolingo and other games on my phone. Finally at 11.45am the nurse cheered as she carried my Herceptin into the unit and we were able to get started. See what I mean about the fact that I needn’t have stressed about trying to get there early this morning?

While the infusion was doing its thing, I couldn’t help feeling grateful that I didn’t need the cold cap for this one. Funnily enough, no one else was using it either. I guess most people there were resigned to complete hair loss or perhaps  being treated with different drugs which don’t cause hair to fall out.

Soon after my treatment had started, the lunch trolley was wheeled round and I took a jelly, crisps and juice but no sandwich. The nurse had informed me that I would be there until 6pm so hubby was less than happy with my paltry food selection. He set off to the cafe in search of something more substantial and was soon sending me photos of what was on offer. A video of ‘live chefs’ cooking noodles with meat and a choice of sauces was winging its way to me next and you guessed it, that is what he opted for. A while later, he insisted that there was far too much food and that I would have to finish his portion. Very crafty but it worked. Before long I was happily tucking into the next best thing to a Chinese takeaway having gained the nurse’s approval. I was also met with many envious comments from fellow patients whose egg sandwiches no longer held any appeal for them.


Back to Herceptin which was going through without any issues, until I was twisting my cannula hand to hold my ‘takeaway’ container…oops! This meant hubby had to hold the carton much to everyone’s amusement. Treatment was completed by 1.30pm and I was disconnected from the tubes. The cannula was left in situ in case of any reaction later on but generally, I felt free as a bird. Then boredom set in.

Luckily, I had brought my crochet along so I spent a while doing that. Then we had a surprise as one of our old neighbours and a good friend suddenly appeared. He works at the hospital so we had a chat which was really nice. This was followed by a visit from my favourite nurse so it was hugs all round and I suddenly felt really popular. We also got to applaud 2 people who rang the end of treatment bell.

Then things went quiet again and I had that feeling of being on a long haul flight where you’re kept busy for a while with safety demos, food, and a film for about half the flight and then you realise you’ve still got hours to go. Even my treatment nurse called over to ask if I was bored yet and I had to admit that I was.

Somehow we made it to the slightly earlier release time of 5.30pm. I think it helped that we were having a good old chinwag with the couple next to us. Fortunately I had encountered no reaction to Herceptin so my cannula was removed and we were free to go. We both felt exhausted which is odd when you’ve just been sitting around all day. Not unlike a day of sitting around the swimming pool or at the beach on holiday. That’s my third holiday related comparison…Mmm, something tells me we need a holiday!

Home we went for some dinner, a short walk and an early night. Can’t quite believe we’re back there tomorrow for Docetaxel. Now let’s see if I can get any sleep having taken all those steroids…




What to expect from docetaxel (T)

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 hoping not to experience too many of these side effects and will just have to carry on taking things one step at a time.

So as it stands, I am going for my blood test on Tuesday and all being well, herceptin on Wednesday and docetaxel on Thursday.

The long haul to kicking cancer’s backside continues.


Image result for little miss strong

And the side effects pile up

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.



Chemo 3

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!

My frozen head. Spot the icicle that looks like a bow!