Chemotherapy

I was asked if I minded being put through a programme/model to see how effective chemotherapy would be for me. I did explain this in chapter 1 but will include it again here. I didn’t quite understand what this programme was and cannot remember what he called it (possibly PREDICT) but this is the information he gave me. He said that without chemotherapy, 16 out of 100 women die within 10 years – this is with the same cancer as me. If I had chemotherapy, it would come down to about 10 out of 100 dying within 10 years. If I was post-menopausal and had the zoledronic acid, it would be about 8.5 women out of 100. As I was being given this information, I converted it to survival rate – I couldn’t think about it as dying because that is not what I wanted to do. Basically, the numbers were 84% without chemo, 90% with chemo, and 91.5% with chemo and zoledronic acid.

I was asked if I would like chemotherapy and of course I said yes. However, I was given a rather large, yellow consent form to take away and sign and then bring back. I found this to be a very peculiar consultation as I couldn’t understand why on earth anyone would say no but I suppose they do – as I went through chemo, it became apparent that people do say no and ask for it to be stopped. I didn’t like the idea of poison being put into my body and we have all heard the horror stories about chemotherapy. I also understood that this is when I’d look like a cancer patient. Up until now, I didn’t. I knew that I was going to lose my hair – that was one question I can remember asking Mr W when he gave me my cancer diagnosis back at the beginning of March.

Finally, I talked to Dr N about work. I haven’t explained but I am a specialist teacher of cognition and learning and work in a small team supporting schools in helping children with special needs. I work with 43 or so schools – I travel to them, carry out assessments with children on a 1-1 basis, observe them in class, speak with teachers and SENCOs, deliver training and generally be at the end of an email if any advice is needed. Dr N said that “children are dirty”, “schools are full of germs” and “COVID hasn’t gone away” – basically, I understood the answer to be a ‘no’ and that I would have to work from home. From diagnosis in March 2023, I continued to work full time but because I would be immunocompromised, I would not be able to do my physical visits – this was understandable (and I completely expected it) but still hard to accept. I love my job and especially enjoy working with the pupils. It was going to be extremely difficult staying away.

After that consultation, I found Nessy and had the seroma checked. All was fine. At this point, I’d like to say that I wasn’t at all scared about having chemotherapy. I understood that it was an absolute necessity – I didn’t have any other options to try to stop any recurrence unlike many of the other breast cancers. I was very worried about being sick – I have a phobia of this but it was noted by Dr N. I wasn’t too worried about the other side effects as I quite like researching information, which I did before I started.

I found a company, Beauty Despite Cancer – Jennifer Young, who make lots of lotions and balms that have been developed specifically for cancer patients. They included nail varnish, scalp balm, scalp oil, foot balm, nail oil, nail mask, itchy skin oil, shea butter – you name it, they had something for it. Yes, it is expensive but it is lovely stuff. I also made use of Aveeno. Again, this works well and combats dry skin. I’ll try to include some tips that worked for me but it must be remembered that everyone’s experience of chemotherapy will be very different – particularly from me, because as I progressed through the cycles, I began to feel like I was going against the norm and was quite unusual.

Through my research, I’d also found out about headwear. There is a great company called Annabandana who make affordable hats and headbands. Although I had some of these, I opted to wear turbans from Christine Headwear. These are expensive but oh so comfortable. You wear the hats all day and they need to be comfortable which these are. I managed to find many of mine on eBay or Vinted. Some were brand new and some were used. It didn’t really worry me that they had been used – just wash them and make use of them.

The last bit of research I did was food. This area is a minefield. You get given lots of information from the hospital about what you should and shouldn’t eat. Then you spend the next few months looking at packets checking to see whether things are pasteurised, or asking if the food has been freshly prepared, or checking that it hasn’t been sat there for too long (like salads etc.) It became quite a chore for me as I love my food to be quite rare – which you are not allowed to have – and I couldn’t have anything homemade from our local farm shop deli. It becomes even more tricky when you are neutropenic. 

Ten days after my consultation with Dr N, I had to go to hospital to speak with a chemo nurse. I had my height, weight, blood pressure, bloods etc. taken. When I spoke with her, she gave me my schedule. This had the pre-chemo dates, chemotherapy dates and anything else. I found out that I was post-menopausal during this appointment which meant that I would be given the zoledronic acid. In addition, it was explained that I would have a PICC inserted (PICC stands for peripherally inserted central catheter) – from this point on, I didn’t really listen to what she was saying. A PICC is something that I didn’t want. It is basically a tube that is inserted into a vein in your arm and then pushed until it is near your heart. There is a plug at the end of it which dangles from your arm. It was explained to me that the chemotherapy drugs would destroy my veins and I would really benefit

from this ‘piece of kit’. At the time, I really didn’t want it and cried when it was fitted on 24th May, the day before chemo, but I can honestly say that it was quite possibly the best thing I did even though I hated it. I named the thing ‘Doris’ and did eventually get used to it. I could shower if I wore the plastic Limb-O cover and slept fine with it. It does get in the way and you do need to have the dressing changed and the line flushed each week but it makes life so easy. Blood can be taken from it and the chemo is delivered through it. Basically, once fitted, you don’t need to have any needles inserted into your arm. If you are offered a PICC or a port I recommend you have it even if you do hate the idea. By the end of chemo, it was also trying to remove itself. However, the lovely Ramona kept an eye on it and we still had about 1cm left by the time chemo finished – if it came out another 1cm, I would have needed another PICC inserted. 

The day that I always knew would happen came around quickly – Thursday 25th May 2023. This was the day I would have my first cycle of chemotherapy. I had asked if I could have all my treatment at a hospital a little further away; this was agreed. Before my chemo appointment, I went for a walk and carried out some virtual reviews of children at a school. Andy then drove me to the hospital to have chemo. What a strange thing it is! I was called into a large room and asked to sit in a comfy blue chair which could recline (15 rounds and I couldn’t work out how to do it). All the other blue chairs were filled with people attached to IV lines. There is a constant beeping of machines but it is generally quiet. Some people are asleep, some are reading, some are watching things on their iPad and some are just looking out of the window. You are also quite far apart so it’s difficult to speak to each other.

So, I’d been asked to sit in a blue chair. A nurse came to me and began giving me lots of medication – anti-sickness, steroids, etc. I had to wait an hour for the anti-sickness (Aprepitant) to kick in before chemo could be given. I’d always assumed that I would be plugged into an IV but for the EC (epirubicin and cyclophosphamide) a nurse sat in front of me and syringed it in. The epirubicin is bright red and looks horrid – it’s nickname is ‘The Red Devil’; the cyclophosphamide is clear. This gave me the opportunity to chat to her. It didn’t make me feel ill as it was going in. After this, I had the first zoledronic acid. This was put in via an IV line. All in all, it took about three hours. When finished, I was given an armful of drugs to take home. Basically, for the next three days, I had anti-sickness and steroid tablets. From day 3, I would need to inject myself for five days with Filgrastim (G-CSF). This helps the bone marrow make white blood cells ready to help me take the next lot of poison in two weeks. That was it! Andy and I went home and I felt fine.

I felt fine the next day – I didn’t feel sick, I was very hungry (no major taste or smell changes), I slept ok but not brilliantly and got a little tired by the end of the day, and I had a little headache. Other than that, I felt fine. I felt fine on the second day even though I didn’t sleep particularly well. The third day was also fine but I had to begin giving myself the G-CSF injections. Hated those! I did end up back at the hospital on day five as I had woken up with a very irregular heartbeat. I had an x-ray to check that the PICC hadn’t moved – it was still in place. They rigged me up to an ECG machine – they reported that there were some minor changes; they took bloods – the G-CSF was working well; my blood pressure was a little high. Generally, they weren’t overly concerned. When I saw Dr N on day 7, he said that he’d keep the dosage the same. As this first fortnight progressed, I realised that I was able to control the irregular heartbeat – in other words, each time it started ‘fluttering’, if I distracted myself, I could make it go away.

On Monday 5th June 2023, I went to my first pre-chemo appointment. This is where you have your weight, blood pressure and SpO2 measured along with bloods being taken to check that everything is high enough to receive the next cycle of chemo. You also get to chat to a nurse to discuss how you have been feeling – you’re always asked about your bowels! As I said in the previous paragraph, the G-CSF was working well – my neutrophils were at 16.3. We were now six days later and my neutrophils were 0.6! They needed to be at a 1.0 in order for me to have chemo on Thursday. That was it – my first delay. I’d only had one cycle and already I couldn’t have another. I was so upset. I hadn’t felt ill, quite the opposite actually. The day before pre-chemo, Andy and I had walked nearly six miles up and down the Wye Downs! The pre-chemo nurse phoned me later that same day to say that there would be a delay. All I did was cry. It meant that this ‘shitshow’ as I’d begun calling it, was already going to go on for another week longer.

Because I was so upset, I contacted the Cancer Care Line to see if I could speak with Nessy. I couldn’t do so until a couple of days later so I spent time researching how to boost neutrophils through food. From what I understood, I needed to up the B12 and folate (B9). In the meantime, my days had been changed from Monday and Thursday to Wednesday and Friday – this completely messed up my work diary and so I needed to sort that out. I really wasn’t impressed and just got upset so often. On that Thursday, I had to go to the hospital to have the PICC line sorted out and I saw Nessy. I was so incredibly upset and cried copious amounts with her. She asked if I could have another blood test to see what they were doing – they were on the up and now at 1.1. Thank goodness! This made me feel so much better.

It was between cycle 1 and cycle 2 that my hair began to hurt (yes, my hair hurt!) and started falling out. The one thing I wasn’t expecting was the pain. It hurt at the follicles and if I touched it, it was incredibly painful. It was almost as if my hair was too heavy and it needed to go. Andy buzzed my hair really short on the Saturday, day 16, and I began to wear my turban hats. As I wasn’t worried about my hair falling out, I found the whole process hilarious – I literally couldn’t stop laughing. Huge clumps would be in the bath and every time I touched my head, more hair fell out. I couldn’t wait for it to be gone to be honest. The photos below show the transition from hair loss day one to as bald as I got. It took approximately a week.

I had pre-chemo on Wednesday 14th June 2023. My bloods were good and so I had chemo on the Friday. Once again, I felt fine. In actual fact, for the final two cycles of EC, I didn’t have any delays and I felt completely well. The only real side effects I had were a headache the next day, a little constipated (this could easily be sorted with medication), very hungry, and sleep was disrupted. I continued with my walks every day. I worked every day although this was from behind a computer. I ate all my food. I drank lots of water. The one thing I did notice was that my neutrophils were not great. They were getting lower and lower, and by the time I got to the final EC, they were at 1.1 and I only just managed to have chemo. I did ask what would happen if this was the case when the regimen changed to weekly paclitaxel and carboplatin as I’d been told I wouldn’t need the G-CSF. It was suggested that I should bring the nurse’s attention to it on 2nd August, the pre-chemo before the regimen change. I knew the weekly cycles were going to be troublesome as I had been watching what my white blood cells and neutrophils were doing (I had a spreadsheet – that’s the sort of thing I do!)

At the end of the cycles of EC, I had a three-week break. This was enough time for my white blood cells and neutrophils to get themselves into the ‘normal’ range. I’d like to say that before I started chemo, my neutrophil level was 3.2 – the range is 2.0 to 7.5. I felt like I didn’t have much room to manoeuvre when the chemo knocked them out and once the weekly cycles started, my blood wouldn’t recover quick enough if I didn’t have the G-CSF injections to help me. Anyhow, on 2nd August, I brought the nurse’s attention to what I was seeing and what I was concerned about but I was told I wouldn’t need them and that it would be fine. (In January 2024, my neutrophils were still only at 3.4 so they are never great).

On 4th August, I had my first ‘double whammy’ of paclitaxel and carboplatin. This went in via IV and took quite a long time. Again, I didn’t feel unwell afterwards but was given some medication to take along with G-CSF. The next pre-chemo was on my birthday (I took cakes and biscuits for the nurses) and my bloods were high – the neutrophils were at 22.7. Chemo went ahead as planned. I had just the paclitaxel and was sent home with some steroids and nothing else. This was the moment of truth and I knew that when I went to pre-chemo on 16th August, there would be a delay.

The 16th August 2023 came and I got to the hospital for pre-chemo. I spoke to the nurse on the phone after my bloods had been taken and I saw Nessy. I told her, the pre-chemo nurse and the chemo tech that there would be a delay – and there was! My neutrophils were at 0.9 – I was 0.1 away from having chemo safely. I was so angry because I had told them that this would happen but I hadn’t been listened to! I asked to go over again the next day to try again but this was refused. On the following day, I ended up having four panic attacks and not remembering much about what happened. I didn’t handle delays at all well and got very upset. I’d say some things that were constantly in my mind and probably scared those around me. I got told by professionals that I should have counselling or therapy and also medication. The only person who felt that I didn’t need all of this (except me) was Nessy. I spoke with her on Friday and she understood that it was frustration. I was generally ok but I needed this ‘shitshow’ finished. Each delay added another week. Each delay meant I couldn’t get back into schools. Each delay was utter shit! I am so grateful for Nessy’s support – I’m not sure I can ever explain this fully to her but she made such a difference.

This delay was for a week so the next Wednesday, I went back to the hospital to have my bloods taken. I had spoken with Dr N the night before – this was a planned consultation – and told him my concerns about how my blood was behaving. He initially said that I wouldn’t need the G-CSF but I got upset and explained what I had seen in my bloods. Eventually he said that I could have two injections each week. I felt that this wasn’t going to be enough and that there would be delay after delay, or that he’d have to reduce my dose which I (and he) didn’t want. However, this consultation really upset me. I felt that I wasn’t listened to by Dr N and the frustration overtook me. I was also upset on the Wednesday and found it hard to control myself before my bloods were taken. However, never in a million years did I think I would be delayed again – I was as my neutrophils had gone down to 0.7! Oh my goodness did I cry. I could barely control myself. I was speaking with one of my colleagues, Claire, on Teams at the time and she saw my reaction. I did manage to calm myself in the next couple of hours and phone Macmillan. They advised me to look at the NICE guidelines to find out why I wasn’t being given the G-CSF – I couldn’t find a reason. I also found some other information that suggested there was no good reason for me not to have the G-CSF. The only thing I did find was some guidance from my county about how it should be given and I didn’t fit the criteria. It felt like this was a funding thing!

Anyhow, I spoke with Nessy the next day and I shared what I had found out. I made the decision to try to keep myself calm – there was absolutely nothing I could do to have chemo any sooner. I just needed to make sure that my bloods were good enough for my next session. Nessy explained that she had been emailing my consultant and that he had agreed to give me three days of G-CSF – this may well be enough to get me through each week. Again, I was very grateful for her support. I also spoke with an oncologist from Germany who was a friend of a friend. She explained that she was a gynaecologist and dealt with everything to do with breast cancer as well. She specialises in diagnosis, surgery, chemo and whatever else comes up surrounding breast cancer. The only thing she doesn’t do herself is radiation treatment. We spoke on the phone, I gave her details of my regimen and how my bloods were doing and basically she said that if I was her patient, she’d be prescribing me G-CSF. I asked her outright whether there was a medical reason for me not to have it and she said no; I then asked her if the G-CSF affected the efficacy of the paclitaxel and she said no. I was happy with this and thanked her – I felt that I was justified in being the nuisance that I was making myself. A few hours later, she messaged me again and explained that she had just left her oncology board meeting and that no colleague of hers saw a medical reason for not giving the G-CSF and that they would all give it to me. I am so grateful for this conversation as it made me feel that I was justified in everything I was saying and what I knew I should have had weeks previously. The one thing I would say from this experience is that if you need to, QUESTION AND FIGHT! Don’t just settle for what you are being told. Ensure your views are clear. Be your own advocate. It is hard – I was never physically ill and so I could do it but if you are ill, you need to have someone with you at all times, fighting your corner.

Thankfully the following week, there was no delay. In fact, my neutrophils had reached 2.3 from 0.7 in a week and we were good to go. I did have to miss one of the paclitaxel, cycle 1 day 15, and went straight onto cycle two day 1. Pre-chemo the week after this, Wednesday 7th September 2023, was even better. I found out that my neutrophils were at 9.9 and so chemo went ahead on the Friday. All I hoped was for it to remain like this due to taking three days of G-CSF each week.

As time went on, and by this, I mean 4 weeks…my bloods were beginning to drop. I took the decision to start my injections a day later so that I could reach the Wednesday. This meant that instead of starting on day 2, I’d start on day 3 which is what I’d done when I was having EC and when I only had them following the first carboplatin. I’d found some guidance from a medical trust in Hampshire who start from day 3. I’ve since found out that other counties have different policies and many give their patients G-CSF with paclitaxel each week. I really shouldn’t have needed to have the troubles I had.

I did begin to develop a few side effects. Neuropathy in my feet and fingers was a little annoying. I would say, find some exercises that may help. The whole fizzy fingers and feet feeling was very irritating but manageable – it does continue to this day along with possible carpal tunnel in my right arm. I also began to have a bloody nose. I assumed that the lining of my nose had broken down and decided to play up. This happened during the final couple of weeks and I decided that I wouldn’t share this with the pre-chemo nurse as I didn’t want my final chemos delayed. Other than that, the side effects remained minimal. Sleep was rubbish, I was eating too much (generally doughnuts) but I was nearly there.

As we got closer to the end, I began to let myself think about finishing – I’d been given a provisional date for the unilateral mastectomy (4th December 2023) and I wanted to get chemo done. A couple of the nurses had explained that Dr N may add on the paclitaxel I’d missed in August but no one could tell me whether this would definitely be the case. I was booked to see him on 26th October – this was the day before I was due to finish chemo meaning I’d need to wait until the very end to find out what was going to happen. I couldn’t get excited. During that final week, Oncology phoned me to explain that Dr N would not see me face to face due to a personal emergency; it would be a phone call. They then rang the following day and said that he was taking emergency leave and my appointment would be cancelled. I made the assumption that the chemo I was due was my final one – I wanted to ring that bell!

My final chemo was on Friday 27th October 2023. I arrived and waited, as usual. When I was called in, I checked with the nurse about whether today was my last one. We looked through and she couldn't be sure. She suggested that I wait until Dr N returned. Nope, that wasn't going to happen. I got upset... again... and then said that I was done. I made the decision that I was not having any more even if it was prescribed. After the last one, I would have had 15 out of the 16 at full dose. Enough was enough; I was ringing that bell!

At the end of the infusion, I got the nurse to take out my PICC line. That was painless. I'm now left with the tiniest of scars on my arm. Although it was good riddance, I was also grateful for this great piece of kit that has saved my veins.

Once the PICC was out, it was time to ring that bell. Andy had come in to video it and the nurses and other staff gathered round. I certainly rang that bell. I also did a little dance. Never have I been so happy.

That was it. Chemo was done. It was time to move on to the next bit. This was where the proper fighting was about to begin.

Here are some of the things that worked for me but do remember that everyone’s experience of chemotherapy will be different:

• Ask for a copy of your blood results each cycle. It is interesting to see what they do and also if you want to look for patterns. I am so pleased that I did this.

• Paint your nails. This is both finger and toenails. I thought this was an old wives tale to begin with but did it anyway. However, during one pre-chemo session, one of the nurses told me to do it as I had bruised big toenails which were hurting. She explained that the darker it is, the more likely it is to block out UV rays. It also hides blemishes and can help to strengthen the nails.

• Use nail oil/cuticle oil daily. This will help keep your nails in a good condition and the skin that surrounds it. The last thing you need are lots of hang nails which will open up your skin and increase your risk of infection.

• Smother yourself in moisturiser every day, probably twice daily, and I mean everywhere! Aveeno works well but I did love the specialist products. They smelt and felt nice. The moisturiser stops you having itchy, flaky skin. I didn’t suffer with this at all.

• Keep your scalp moisturised if you lose your hair. Try to use something with tea tree oil in it as it really cools the scalp down. I didn’t really suffer from an itchy scalp (or skin for that matter) but I think this is partly down to me starting this skincare regime from the very beginning.

• Invest in a silk pillowcase if you lose your hair. If you make the decision that you are not going to save your hair, it will eventually hurt at the follicles. I’d already had my hair cut short (it was shoulder length when I was diagnosed) but when it started hurting, I got Andy to buzz it with a number two clipper. It does hurt but the silk pillowcase really helps during the night. You can find these relatively cheaply on Amazon.

• As well as using lots of moisturiser, put on lots of SPF 50 sun cream every day. You become more susceptible to the sun’s rays during chemo and you don’t want to burn. Burning means sore skin, sore skin means open wounds, open wounds mean a higher risk of infection.

• Take a look at Look Good Feel Better: https://lookgoodfeelbetter.co.uk/. This is a charity that helps men and women through their cancer diagnosis. They run a variety of workshops both in person and virtually – they are all free. I virtually attended the following: Skincare and Makeup, Nail Care, Hair Loss/Scalp Care/New Growth, Headwear/Wigs/Brows/Lashes, Styling for Confidence. They also run lots that look at exercise. After the completion of some of the workshops, bits and bobs are sent to you. However, the knowledge I gained from each and every workshop has been invaluable.

• Germoline is a cure for everything. When I got a spot on my face, I put on Germoline. When I went for a walk and got scratched by brambles, I put on Germoline. I always carried some with me so that I could put it on immediately. I also had a few plasters in my bag just in case I needed to cover something whilst I was out. I had a few mosquito bites during treatment – I did use Anthisan and not Germoline but always covered them with a plaster so that if I scratched them, I wouldn’t take the top off any kind of blister etc. This way, I could keep everything intact and not let the wound open.

• Drink lots of water. I aimed to drink 2.5 to 3 litres of water every day. This was in addition to cups of tea, glasses of milk and water found in food. Yes, I was on the toilet all the time but I feel that this was one of the main reasons why I felt so well throughout.

• Try to eat as best as you can. If you can’t eat big meals, do little and often. I didn’t really suffer with this and was quite the opposite – I wanted to eat all the time. Chemo made me hungry – I had to rein in what I was eating as it was this that made me put on a little weight rather than the treatment and medication. Try to include a variety of food groups to help your bloods – however, once you’ve started chemo, there is nothing much you can do – trust me, I tried!

• Even if you feel a bit rubbish, try to get out and walk. I was luckily able to walk at least three miles a day, every day. Not only was this good for my mental health, but I was able to keep up my fitness level. I know of others who went for a very short walk even when they were feeling at their worst.

• Wash your hands frequently. The key thing is to keep clean so that you reduce the risk of infection.

• Wash your food. I love berries and so soaked all my ‘small’ fruit in a bowl of water and white vinegar for 10 minutes before washing it under the cold tap and eating it. Again, this is just to reduce the risk of infection.

• Neuropathy started in my feet with only five rounds left; it started a few days after my third infusion of carboplatin. I found some exercises on the internet to try to keep it at bay. I would stand on tiptoes for a little while, then roll back on my heels and hold. I’d repeat this 3 or 4 times. Following this, I’d bend my toes against a wall, bend that same knee but keep the other knee straight whilst it was out behind me. I would do this with both feet 3 or 4 times. It is hard to make time for these exercises so I decided to do them whilst brushing my teeth in the morning and before I went to bed. That way, I only needed to try to do them another once or twice a day. It also started in my fingers two or three weeks later.

• If you can’t sleep, find a playlist on Spotify that has music at 432hz and play it all night. This is a solfeggio frequency – look it up!

As I’ve already alluded to, I wasn’t ever ill. I never once felt sick, I was always hungry, I didn’t really suffer with any major side effects – I was very lucky but I also strongly feel that two things really helped. These are drinking lots of water along with other fluids every day and getting out in the fresh air and walking. Even if you feel rough, try to do both of these things. In October, the final month of chemo, I decided to complete another fundraiser for Cancer Research UK – walk 100 miles in a month. I was able to raise £1000 including Gift Aid.