Here I will share answers to some of the questions I frequently get asked about my experience with chemotherapy. Please remember I am not a medical professional so I can only share my own experience. None of the below should be construed as guidance or advice. If you have any concerns or need answers tailored to your situation, please contact your medical team.
If you have any questions about my experience that have not been answered here, feel free to contact me and I will do my best to answer.
Frequently Asked Questions
Q: What cancer did you have? A: I had grade 3 ER+ invasive ductal carcinoma. Put simply it was a hormone receptive breast cancer.
Q: What was the schedule of your chemo? A: I had six three-weekly cycles. I would get a dose of chemo, then I would have three weeks for the treatment to take effect and my body to recover, then I would have the next dose of chemo. I would have a blood test a couple of days before each chemo dose to ensure my body had sufficiently recovered, then I would get the next dose of chemo.
Q: Did you have chemo before or after surgery? A: After.
Q: Could you drive yourself home from your chemo appointments? A: I was told not to so I didn't. I might have been able to, particularly on the meds that I got in my last three doses, but it wasn't worth the risk. I certainly wouldn't recommend it.
Q: How long did each chemo session take? A: Each session took several hours. The infusion itself would take about an hour to an hour and a half plus some prep time beforehand. This included flushing my PICC line and the staff verifying my details. However, as I was cold capping, my time in hospital was extended significantly. Due to my hair being very thick I would have to cold cap for 40 minutes before the start of the infusion and keep cold capping for an hour afterwards.
Q: Were any of your treatments delayed? A: Yes, my second chemo treatment was delayed by two weeks as my blood tests showed my liver was struggling to recover. I was able to have my second dose once my liver function was back to acceptable levels. The oncologist also adjusted the dosage for my subsequent treatments to suit me better. After discussion with my oncologist, my fourth chemo dose was delayed by a week to allow me to travel to visit my family as they were unable to come to me.
Q: What chemotherapy did you have? A: I had a regime called FEC-T. It consisted of being administered Fluorouracil, Epirubicin and Cyclophosphamide for the first three doses, then docetaxel (Taxotere®) for the remaining three doses.
Q: Were you given sufficient information? A: I was given plenty of information on the chemo drugs I was going to receive, the potential side effects and how to look after myself during the time.
Q: Were you scared? A: I was. Heading to my first session I felt like a small kid on my very first day of school. I felt lost in the big hospital with all the corridors. Fortunately the staff at the hospital knew I would be feeling that way and were very helpful. There was someone to come with me to find the ward where I would get my treatment. There I was greeted by lovely volunteers who did their utmost to make me feel looked after. The oncology nurses were equally brilliant. I was also scared of how the drugs would make me feel. Again though I had been given a lot of information and advice on what to do. I was also given the phone number of a helpline I could call night and day.
Q: Did you cold cap? A: I did. I wasn't going to at first - I planned on shaving my head and accepting I would be bald. However I got scared my hair might not grow back so I decided to give it a go. I tolerated it very well the first two sessions, probably because my hair is so thick. As my hair thinned it got tougher and it would make me feel very woozy, although I found keeping my eyes closed made a big difference. I lost an awful lot of hair, particularly on the top. You could see my scalp and I wore slouchy beanies all the time. However, thanks to the cold cap my hair started growing back before my final chemo cycle, which was great. Once my last cycle was done and I'd waited a few weeks to be sure my hair was continuing to grow back, I shaved it all off. As I already had regrowth it looked like a style choice rather than due to sickness.
Q: Did you lose your hair? A: I chose to cold cap however I did lose a lot of my hair, especially on the top. My hair was so thick I believe the cold struggled to get through as well as it might have done on someone else. Also our heads are not perfectly round. I ended up losing a lot of hair on top to the point you could see my scalp, but I retained length which meant that as long as I was wearing a hat you couldn't tell I was going through treatment. When my treatment was done and I could see my hair coming back, I chose to shave all of it to a buzz cut so it could grow back evenly. I didn't want to look like a sick person anymore and shaving it off once I had some regrowth meant it looked intentional. I could have kept wearing hats though, and waited for the top to thicken and grow through again. Shaving it felt a bit like the closing of a chapter and the start of a new one. I should add I did lose hair elsewhere too. Hair in the more... erm... intimate area was the first to go. My eyelashes and my eyebrows thinned but didn't go completely. My eyebrows actually thinned after chemo. My leg and armpit hair went too. I didn't notice I'd lost my arm hair till it started growing back.
Q: Did you wear a wig? A: I never did. I still had some hair thanks to the cold cap and as long as I wore a hat you could never tell I had hair loss so I didn't bother.
Q: What did you bring to your chemo sessions? A: Here was my chemo packing list. Everyone's is different though! - Â Â Â Â Â A small handbag with my bank cards, some cash, my lip balm and some tissues - Â Â Â Â Â My hospital parking permit - Â Â Â Â Â Masks - Â Â Â Â Â My glasses - Â Â Â Â Â A book - Â Â Â Â Â My headphones - Â Â Â Â Â A battery pack and cable for my phone - Â Â Â Â Â A fleece blanket - Â Â Â Â Â Thick socks - Â Â Â Â Â A scarf - Â Â Â Â Â A washbag containing a wide tooth comb, my headband, and some Simple conditioner (for the cold cap prep) - Â Â Â Â Â A small towel to protect my shoulders from my wet hair - Â Â Â Â Â Some boiled sweets - Â Â Â Â Â Some snacks - Â Â Â Â Â A bottle of water - Â Â Â Â Â The documentation about my PICC line
Q: Did your hair come back? A: It did. Thanks to the cold cap my hair actually started growing back before my final treatment. It grew back thick and strong and curly. It's still curly now. The rest of my body hair returned too and I'm happy to say my eyelashes are back to normal although my eyebrows have stayed a little thinner.
Q: Could you eat during your chemo sessions? A: Yes. The volunteers would come round at lunch time offering sandwiches, fruit, yoghurt. They would also offer hot drinks and biscuits.
Q: Did you have a chemo port? A: No but I did have a PICC line.
Q: Did you have a PICC line? If so, how was it? A: I did have a PICC line. I was nervous about the insertion but that was actually ok. Unfortunately it caused some blood clots which meant I had to be on blood thinners for 6 months but other than that it was actually great. I became kind of fond of it. It was like my chemo companion. It saved me from many needles and catheters. It meant my veins were protected from the risk of damage. A district nurse came to flush it once a week and it was an opportunity to have a chat with a medical professional which brought a bit of extra reassurance. I got a protective sleeve to put over it which allowed me to shower and was given some tubular bandage to keep it in place day to day. This is going to sound weird but I missed it when it was gone.
Q: Were there a lot of needles? A: I had a PICC line which significantly reduced the number of needles I had to deal with. Needles were involved for my regular blood tests as I had those done at the local hospital and they couldn't do it via the PICC line. Had I gone to the hospital where I had my chemo, they would have been able to do it through my PICC line and there would have been even fewer needles. I also self-injected a medication to boost my white blood cell count once a day for 5 days after each round of chemo. I also had to self inject a course of blood thinners as I got blood clots from my PICC line. Self-injecting sounds scary but it was easy and actually felt quite empowering.
Q: Did you have to self-inject? A: I self-injected a medication to boost my white blood cell count once a day for 5 days after each round of chemo. I also self-injected a course of blood thinners as I had some blood clots caused by my PICC line. Self-injecting sounds scary but the syringes are designed to make it very straightforward to do the injection under the skin of your lower belly. A nurse showed me how to do it and once I’d got the first one done I realised it was easy and didn’t really hurt. In fact it actually felt quite empowering. At a moment in my life when I felt weak and like everything was out of my control this was something I could do for myself and made me feel like a bit of a badass! Having said that, if it’s something that I hadn’t been able to do a district nurse would have probably come to do it for me.
Q: How did the chemo make you feel physically? A: It's quite indescribable but I felt exhausted, heavy, slow. Apart from the very first night I didn't have bad sickness. I would feel queasy at most. The first cocktail of drugs would make my body feel like it didn't fit and like my eyes were wonky. I needed to sleep a lot and waking up was really hard. Effort was difficult. Getting up the stairs to go to the loo was exhausting. By the time I reached the top I was sweating, breathless and my heart was racing. I had headaches. It could sometimes feel like being drunk and hit hard over the back of the head all at once. The drug I got for the next three cycles wouldn't kick in as fast as the first and was less "crushing" but it brought pain. It was nothing unbearable but it wasn't fun. I felt like I was being stabbed by lots of little gnomes.
Q: How did the chemo make you feel mentally? A: It made me feel lonely as only those who have been through it can fully understand. I had times of feeling sad and frustrated and sorry for myself. I had moments of anger too as well as guilt with regards to my loved ones. Chemo also messed with my cognitive ability. My body was poisoned and was working hard to repair itself so there were far fewer resources available for it to spend on brain power. This made me mentally slow and my memory and processing abilities were affected. On the more physically difficult days it meant my feelings were numbed which was probably not a bad thing. On a more positive note it made me really appreciate the days when I was feeling better. I had a new perspective on life. There was a lot of joy and appreciation for the days when I was more "functional".
Q: What side effects did you get? A: In no particular order I experienced: •mild queasiness •diarrhoea & constipation •stomach pain •heart palpitations •numbness & tingling in hands & feet •hair loss (head and body) •aches and pains •breathlessness •shakiness •brain fog •exhaustion •headaches •sore throat •sore mouth •frequent urination •dizziness •change in taste •weakness •disrupted menstrual cycle •heartburn •nose bleeds •nasal congestion •dry skin •vivid dreams •sleep disruption •elevated temperature •painful nailbeds •watery eyes •dry nose I'm aware this is a long and scary list so I must add that they didn't all happen at once. The side effects I got changed when I changed drugs after the first three chemo doses. The side effects also didn't happen the whole time. They would start the day after or a few days after my dose (depending on which chemo I had), they would worsen, be tough for a few days, and then start improving. The final week would be much easier to handle.
Q: Did your weight change? A: Not much. I gained a bit through lack of exercise.
Q: Were you very sick? A: No. I was very nauseous on the evening of my first dose of chemo because I hadn't realised there was a tablet I could/should have taken. After that I was queasy at most. The oncology team were very good about giving me medication to manage nausea.
Q: How did you manage? A: I didn't really have much of a choice! It was that or risk death. But I took it one day at a time. One hour at a time on the more grotty days. Hydration was very important, as was sleep. I ate what I fancied even though it pretty much all tasted the same. Going for a walk every day unless I really was too exhausted was helpful. I found tracking and noting down my symptoms every day was helpful as I could soon predict when I would start to feel better. It also meant I sort of observed myself like the subject of a scientific experiment, which took me outside of myself. I tried to have a good attitude. I thought of it as a new experience, an adventure. I remained curious, trying to understand what was going on. I also kept my sense of humour. The rougher days made the good days incredibly joyful so I always tried to plan something nice to do on the 3rd week of each cycle. Finally, writing was a huge help. Thinking I would use my experience to help other people one day was an incredible motivator. Chemotherapy Airways is the product of some of that writing.
Q: Was it awful? A: Awful isn't the word I would use. I would say it was tough. There were some pretty rough days and it was really hard at times but there were also some ok days and some very good days too.
Q: Was there a support line for you to call? A: There was. I used it a couple of times and they were great.
Q: Did you have any complications? A: Nothing significant. I had blood clots from my PICC line which were resolved with a six-month course of antibiotics. I had a temperature spike during my first round a chemo for which they had me in the hospital for several hours but it later turned out I had a temperature spike several days after each of my rounds of chemo. They would happen just before I started feeling better. My first dose of chemo caused issues with my liver so my second dose of chemo was delayed by a couple of weeks until my liver had recovered and my subsequent doses were reduced.
Q: Did you end up in hospital? A: I spent one long evening and into the early hours at the hospital after my first chemo dose when my temperature spiked and they suspected a viral infection. I then went back a few days later when I had bad pain in my shoulder which turned out to be caused by blood clots around my PICC line. Whilst there they discovered my immune system had crashed. They thought about keeping me in but I was feeling ok so they sent me home with antibiotics.
Q: Did you need a lot of care? A: No. I was able to look after myself, prepare simple meals etc.
Q: Did you have to change your diet? A: Because my immune system was compromised I had to take extra precautions with food hygiene. Everything had to be cooked well and I wasn't allowed to eat unpasteurised cheeses, probiotics, raw fish or leafy greens.
Q: Were you able to exercise during chemo? A: Anything too physical would have been really difficult for me as I was exhausted and my heart would race and I would get short of breath without doing very much. On the worse days, getting up the stairs made me feel like what I imagine being 80 years old might feel like. However I went for a walk almost every single day as it helped with my energy levels. The only exception was if I was feeling really rough. It helped that it was the summer of course but I rarely skipped a day.
Q: Were you able to work? A: I wasn't able to work. I had very limited energy and my brain really wasn't operating at anywhere near full capacity.
Q: How did you support yourself financially? A: I was extremely fortunate that my employer continued to pay me my full salary during my cancer treatment. In an ideal world all employers would do that but sadly many can't or won't.
Q: How much did your chemotherapy cost? A: I am fortunate to live in the UK so my chemotherapy was completely free. I didn't even have to pay for parking.
Q: Were your friends and family there for you? A: My family were as much as they could although it was difficult as my Mum was unwell at the same time. They live abroad so it was complicated. My sister booked a trip to come and be with me but the airline (I won't name names but it's an orange one) cancelled the flight and completely messed her about so she wasn't able to come, which was devastating. Some of my friends were great. Someone who I thought was my best friend let me down. This is a phenomenon called cancer ghosting and really hurt on top of everything else I was going through. Other people who I didn't expect to be particularly involved massively stepped up and were a great support.
Q: Did you get any extra support? A: I was lucky that I didn't need any financial support as my employer was so supportive. I had counselling throughout my treatment, in particular as my Mum was sick at the same time. I didn't really need extra support beyond that during chemo as I was too busy dealing with it although Macmillan was an informative and reliable source of information as was Breast Cancer Now. I did however need emotional support after my active treatment when I felt rather lost. I turned to Maggie's who were a great help with their Where Now course. I also benefitted from Macmillan's Next Steps program.
Q: Where can I go for support? A: If you need support with anything medical I recommend talking to your oncologist or surgeon in the first instance. If you need more general support I would recommend Maggie's and Macmillan. If, like me, you have breast cancer, Breast Cancer Now are helpful too. You might find there are more local charities near you. A quick internet search should help with that. I would definitely recommend steering clear of social media as there is a lot of misinformation going around on there and people who might not have your best interests at heart.
Q: Have there been any permanent effects? A: I don't think so. It took me a long time to recover but I did. Anything I am experiencing now (mostly fatigue) is related to the medications I'm on, not any of the chemotherapy, surgery or radiotherapy.
Q: How was the medical team that looked after you? A: They were wonderful. I couldn't fault them. My oncologist was very patient with all my questions and listened to my concerns. The oncology nurses that administered the chemo was incredibly kind, caring and comforting. The volunteers in the oncology ward were equally fabulous. Five stars, 10/10, would recommend.
Q: Did chemo affect your fertility? A: It did. I was warned of this and was given the opportunity to freeze my eggs if I wanted children. I didn't go for this as I didn't want children but it was still hard knowing that ability to choose was going to be taken away from me. I was told the chemo would make my periods stop but as first my periods went a bit crazy. More frequent and for longer. But they did eventually stop.
Q: Did you have any other treatments? A: I had a lumpectomy before chemo during which they also removed my sentinel lymph nodes on the same side as my tumour. The results of this showed that my cancer was already grade 3 and had spread to one of my sentinel lymph nodes. Also the margins of the tumour that they cut out weren't clear which meant they might have left some cancer cells behind. I therefore had to have a second surgery to remove a bit more of the area where the tumour was and to remove the rest of my lymph nodes on that side to check for further spread. This surgery confirmed that they had taken out all of the tumour and that there was no further spread to any more lymph nodes. After chemo I had radiotherapy. A standard course of radiotherapy for breast cancer is 5 sessions but because of my age and how aggressive my cancer was I had 20. Following all the active treatment (surgery, chemotherapy + radiotherapy), I had 2 years of Abemaciclib, 6-monthly doses of Zoledronic acid for 3 years and I am on hormone blockers for 7 to 10 years.
Q: Did the treatment work? A: It looks like it!
Q: You're so brave, how did you get through it? A: I don't think I'm particularly brave as I had no choice. It was that or dying! Put in that situation I just had to get on with it. I got through it by recording my side effects and realising the pattern was the same for each cycle of each type of drugs. This meant I could predict roughly when I would start feeling better. I slept as much as my body needed to. I tried to go for a walk every single day, only skipping it if I was feeling particularly rough. I also made sure to plan something nice like a day out or a night away for the last week of each cycle, as that's when I would be feeling more human. This meant I would always have something to look forward to. I focussed on myself, on trying to do things I enjoy. I found the evening self-care to be tedious and upsetting when I was losing a lot of hair, so I would always spend that time listening to hilarious podcasts. I would reserve those podcasts for that time only, so it became something to look forward to. Finally I was creative and wrote a lot during that time. It was both a way to look at my experience from the outside and also to record my experience in the hope it might help others in future. Chemotherapy Airways is the result of some of that writing.
Q: What caused your cancer? A: I don't believe anything in particular caused it. I asked my surgeon "is it something I did?" and she said "yes, you were born a woman". 1 in 7 women in the UK get breast cancer. In 2022 it was the second most common cancer worldwide (data from Breast Cancer UK). Cancer is caused when mutations happen in a cell's genetic code when the cell divides. The cell then no longer behaves like a normal cell. It can start making too many copies of itself and/or no longer die when it should. Cancers are more likely to occur in areas of the body in which cells divide more often, and the breast is one of them since breasts undergo a lot of change during menstrual cycles. Environmental factors might have influenced this but chances are it was just rubbish luck. I was tested and my cancer was not caused by any genes known to increase the risk of breast cancer so it doesn't look like it was something I inherited. It was important to me not to try to apportion any blame for what happened because that would be of no help whatsoever.
Q: Did you have genetic testing? A: I did and I didn't have any of the genetic mutations known to increase the risk of breast cancer.
Q: How do you feel now? A: I feel fine. I have moments of fatigue caused by the medication I'm on and I need longer to recover when I push myself either mentally or physically but I've adapted. Of course I now live with the fear of the cancer returning but I try not to think about that too much. On a positive note I feel cancer has brought me a certain wisdom and perspective. I no longer worry about some of the things I used to. I think I appreciate life more and can enjoy some very mundane things in a way I couldn't before. Knowing what I've been through also brings strength as after that there are not a lot of things I feel I can't handle.
Q: Would you go through it again? A: 100% yes. There were some tough times for sure but it wasn't all bad. And I'm still here.