My Timeline

It was Sunday 5th February 2023 and I was in the shower. I washed away the soap from under my right arm and felt a small lump in my right breast. I checked the other and this didn’t have anything. As I had COVID, there was nothing I could do as I couldn’t go to the doctors. I did consider just going as I wasn’t ill and if I didn’t tell anyone, they wouldn’t know. Anyhow, I didn’t.

I eventually had a negative COVID result on Friday 10th February 2023, phoned my GP (I really didn’t feel that anything was wrong) and saw Nurse Fiona that same afternoon. She didn’t seem overly concerned but said that if she didn’t refer me, she’d get told off and wouldn’t if she did. She told me not to worry as most often, nothing came of the investigations. I was now on a two-week wait.

I was invited to the Breast Clinic at my local hospital on Thursday 23rd February 2023. I arrived and saw Mr W. He talked to me about my history and my worries – I explained that I’d found a small lump whilst showering and thought I’d better get it checked out as my sister-in-law, Lindsy, had been diagnosed with secondary breast cancer just before the New Year. He checked both my breasts and found the lump; I didn’t think it was very easy to find. He said, “not suspicious” and I checked that this was what he said with the chaperone nurse – it was. Mr W went on to say that he’d send me for imaging.

The next place I went was to have a mammogram. I’d had one before in 2021 so knew what to expect. The lady carrying out this imaging was thorough and kept pulling some odd faces as she was looking at the screen. Once this was done, I was sent for an ultrasound. There was a room full of people and a gentleman doing the scan. He explained everything he was doing and found the lump. Next, he told me he was going to do some biopsies. At this point, I said that this had escalated quickly bearing in mind I’d been told it wasn’t suspicious. He and the other professionals in the room questioned who had told me this and actually seemed quite angry.

The biopsies were a little uncomfortable but went smoothly. The room full of people explained that I’d be called back to see Mr W once the results were back. That was it…off I went and had to wait. In all honesty, I didn’t give it another thought until the following week. It was quite late in the day on Thursday 2nd March 2023 when I was contacted by phone and asked if I could go to the hospital the next day at 5.20pm. From then on, I was exceptionally anxious and had a very bad feeling about everything. I now know that it was that late as I’d likely been discussed at the MDM that afternoon.

That time arrived and me and Andy went to the hospital. It was Friday 3rd March 2023, 5.20pm, a date and time that I’ll NEVER forget. We were the only ones in the waiting room and I knew which room I’d be going into. There were a lot of people there, one was in a green fleece. We were quickly invited into the room and the chaperone nurse separated me from Andy, closed the curtains and told me to take off my top half of clothing. I commented that I didn’t know this had to be done and she said I’d be doing this a lot. BAM…there it was, the realisation that I was getting bad news. Once I’d stripped off my top half, Mr W came in, checked my breasts, went to his desk, and I got dressed. I came out from behind the curtains and sat in the chair in front of Mr W. The nurse with the green fleece had a Macmillan lanyard around her neck. Mr W didn’t beat around the bush and told me that I had breast cancer. It was stage 1 but grade 3. In other words, it was early but very aggressive. He explained that I would be having something called a lumpectomy to remove the tumour which was about 10mm, then chemotherapy followed by radiotherapy. I did listen to what he was saying and at the time, took it all in. I’ve now forgotten the details. All I do know is, I was terrified but said that I wasn’t going to cry.

Once I’d had this shocking news, Wendy, the Macmillan nurse took me and Andy to another room and gave us a lot more information. She explained that I was oestrogen and progesterone negative and the HER-2 results hadn’t come back but it was likely that this would be negative as well meaning I would be triple negative. I didn’t know what any of this meant and she didn’t even begin to explain it to me but I was told not to Google anything and only use the Macmillan or Breast Cancer Now websites for information.

Again, I can’t remember the full details but once finished with Wendy, we left. That was it! You have cancer…off you go. I phoned everyone I needed to phone and went around my friend Charlotte’s house for the evening. I didn’t drink, just talked.

The next day, I weighed myself. I’d hit my weight target. Great. There’s your reward Julie…have cancer! Mind you, if I hadn’t lost all that weight, I wouldn’t have found the lump until much later and I feel the current outcome would have been very different.

Prior to getting the HER-2 results, I did look up triple negative breast cancer on the Macmillan website. I scared myself witless. I cried and was absolutely terrified. Fiona, another Macmillan nurse phoned me, I think it was either the Tuesday or Wednesday, and confirmed that the HER-2 was negative. I had triple negative breast cancer. That was it! This was the first time I felt like I was going insane. I cried, sobbed, shook, said that I was going to die. You name it, I said it. I was hysterical. But there was nothing I could do about it.

Basically, I understood triple negative breast cancer to be one of the most aggressive forms of breast cancer there was. I wouldn’t be able to have any hormone treatment as it wouldn’t respond. I’d have to have chemotherapy as that, after surgery, would help try to stop recurrence. This would be followed by radiotherapy. Once all that was done, it would be a waiting game. Triple negative breast cancer is more likely to recur as it is generally caught later and is likely to have spread due to its aggressive nature. We wouldn’t know if this was my case until I had surgery. Mr W was going to take the sentinel lymph node as well as the tumour and see what was going on. It is also more likely to recur more quickly than hormone receptive breast cancer. Basically, this was the information I’d read on the Macmillan website; I hadn’t (and have never and never will) Googled triple negative breast cancer.

At some point, a lady phoned me to give me a date for surgery. I said that I just wanted the cancer gone. The date was in April and this felt like it was too far away. The lady said that if I was happy to change consultants, someone may be able to do the operation sooner. I said “absolutely”. A couple of days later, Macmillan Nurse Fiona phoned and said that Mr C could see me on Monday 13th March and do the lumpectomy on Monday 27th March 2023. She also told me that she wouldn’t be at that consultation but her colleague Nessy would be.

On Monday 13th March 2023, 10 days after being diagnosed with cancer, Andy and I went to meet Mr C. He was late – we’d been sat in the waiting room for quite a while before he arrived. I believe I was the second person to be seen by him that morning. We went in and he introduced himself as did Nessy. As always, there was a chaperone nurse. As he was speaking, I got exceptionally upset. Nessy moved Andy away from me and she sat next to me, holding my hand. I was encouraged by them both to explain what was going on and I said that I wanted a double mastectomy. I was told that this is not ‘warranted’ but I was offered a single mastectomy. I looked at Andy and he shook his head – I wanted the cancer gone so this meant a lumpectomy and chemotherapy. A mastectomy could hold up chemo if there were complications and I didn’t want that.

Mr C explained the plan:

• Lumpectomy and sentinel node biopsy.

• If the nodes were clear and there were good margins around the tumour, I would have chemo. If not, I would need further surgery and removal followed by a full body CT scan.

• Chemotherapy.

• Radiotherapy.

• Revisit double mastectomy.

He also went on to explain that he would take lots of tissue to ensure the best outcome and that he would also try to do a little rebuild to even up my breasts – to be honest, I didn’t care what they looked like after the operation – they could fuck right off and I just wanted it done. Because I’d got so upset, Mr C got his diary and moved my operation from 27th March to 20th March – he said that a lady would be moved as she didn’t have cancer. I will be forever grateful to him for doing this. Following this, Nessy took myself and Andy to have my pre-op assessment. I found Nessy to be a lovely lady and felt very comfortable in her presence.

That was it – I was then in isolation and so needed to not be in schools for three weeks – one week to isolate, two weeks where I wouldn’t be able to drive. I contacted schools and work – everyone was amazing. I can’t stress enough how important it is to share a diagnosis with the people you work with and be open and honest. It really does help.

The next thing I would like to stress is how important a specialist nurse is. As Fiona was still on annual leave, Nessy rang me. I asked her if she would be my key worker even though she is based in a different district. She said that she would be. We spoke about support services that are available and we agreed that she would organise some counselling with Martine and six sessions of reflexology through the Harmony Trust. It was also explained to me that I would need to have a genetic test because my breast cancer was triple negative.

The day of the lumpectomy arrived – Monday 20th March 2023. This was a busy day! The first thing you have done is node radiation. This meant that I needed to have a ‘nuclear’ tracer injected into my breast. It was painless and done in minutes. Following this, you have a guide wire put in under ultra-sound. This was a little painful but bearable. Once done, a mammogram is carried out to check it is in the correct place. Lastly, you have the lumpectomy. I’m going to dedicate a chapter to this part of the treatment plan.

The lumpectomy itself doesn’t take too long and you should be in and out the same day. Unfortunately, I had an adverse reaction to the anaesthetic and needed to stay in overnight – I was very sick and didn’t really know where I was for much of the afternoon/evening/night.

A couple of days later, I had the genetic testing interview. I needed to complete a family history of cancer and have some blood taken so that I could be tested for seven faulty genes – I can’t remember the names of them all but they include BRCA 1 and BRCA 2, one of these has been nicknamed the Angelina Jolie gene. If I had a faulty gene, I would likely have a bi-lateral mastectomy and possibly a hysterectomy – this is what I wanted. I do know that I don’t have a faulty gene which is very good for my family but selfishly, not so good for me as it meant that I’d need to fight for what I wanted.

The worst thing about all of this is the waiting. Once I’d had the lumpectomy, I needed to wait for the results. I didn’t get my results (unofficially) until Thursday 13th April 2023 and officially on Monday 17th April 2023 – this was four weeks after the operation. On Thursday, Nurse Fiona rang me in the afternoon (3.08pm to be exact) and told me that my results were “excellent”. This meant that the margins were good and my lymph nodes were clear. The relief was incredible. I have literally never felt anything like it. I hadn’t actually realised how tense I had been and when she told me the results were “excellent”, I could feel the tension leave my body and I wanted to collapse to the floor; it was a very strange feeling.

I received the results officially from Mr C. He explained to me that the tumour was 10mm. He had removed it all with clear 5mm margins. He explained that he had taken four nodes but actually it was eight. These were all clear. Additionally, he told me that it wasn’t near any blood vessels. Finally, he said that he had carried out a couple of ‘tricks’. Mr C explained what these were but I didn’t fully understand. He made it very clear that he had been generous when he was in there and taken more than he needed to – the seroma I had developed (explained in the next chapter) would eventually go away on its own and that it was leaking because he had got very close to the skin. From there, I was informed that the next time I see him would be in a year’s time and if I required any further support in the meantime, to make use of my Breast Care Nurse, Nessy. I did mention the bi-lateral mastectomy and Mr C said, with a smile on his face, that I was “badgering” him – I was doing exactly that!

That was it – the cancer had been removed. I now needed to move onto the next stage of the treatment plan which was chemotherapy. I was contacted by the oncologist’s secretary and given a date of Friday 5th May 2023 to speak with the consultant, Dr N, regarding the treatment I would receive.

Once I knew that I was definitely having chemotherapy, I visited my hairdresser, Corrina, and asked her to cut my hair short. I’ve seen her for years and we’ve always tried to keep the curl in my hair – it was a mission and we couldn’t quite find the right thing to do. However, I’d made the decision that I wasn’t going to use the cold cap to save my hair. I am of the opinion that it’ll grow back; despite having shoulder length, thick curly hair, it wasn’t precious to me. This is where people, mostly women, differ very much. For some, keeping their hair is important – for me, it wasn’t. I wasn’t worried about not having hair and I was happy to wear turban style hats. Corrina cut my hair and we both agreed that it suited me. Everybody I spoke to said that it suited me. I felt that it suited me and although it wasn’t really in a style, I was very happy with it. After about a week, I decided that I was never going to be growing my hair long again – it’s so much easier to deal with when it’s short; a bit of putty and off you go.

Unfortunately, the seroma I had developed decided to burst at the end of April meaning I had a hole – an open wound – in my breast. I went to A and E with my mum who was staying with me at the time so that I could get antibiotics. I couldn’t get an infection as I didn’t want chemotherapy delayed. I also saw Nessy who checked the open wound. It was healing nicely but only really fixed itself in August 2023 – the middle of chemotherapy.

The oncology meeting was very strange, if not surreal. We talked through my medical history which Dr N recorded on paper and I mentioned that I hadn’t had a period since Mr C had told me to stop taking the pill back in March. I also explained that I’d had an FSH test in 2022 which was suggesting that I was possibly post-menopausal. Dr N said that I’d have a blood test to find out where I was in this process – as it happens, my FSH was 81, well within the post-menopausal range (not sure how that happened without me really noticing).

Back to the meeting – this is the surreal part. Dr N asked if it would be ok for him to put me through a programme of something. I didn’t quite understand what this was and cannot remember what he called it (it was possibly called 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 and a similar situation 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. I know that medical professionals need to speak in this way but as he was giving me the data, I needed to convert it to survival rather than dying! That’s what made it very surreal. Basically, it was at 84% without chemo, 90% with chemo, and 91.5% with chemo and zoledronic acid. Would I like chemo? Um, yes please!

Dr N also explained what the treatment would be:

• 4 x two-weekly cycles of EC (epirubicin and cyclophosphamide).

• 12 x one-weekly cycles of paclitaxel.

• 4 x three-weekly cycles of carboplatin. This would be given with the paclitaxel meaning every three weeks, I’d have a double whammy.

• Zoledronic acid (Zometa) every few months for five years (this was later changed to three years – I ended up having three during chemo, another one about three months after finishing and then  would have another five over the next three years, every six months).

I was given my consent form and sent on my merry way.

Ten days after this on Monday 15th May 2023, I met with a chemo nurse. She talked through many things but the one that stuck in my head was the fact that I needed to have a PICC line. I really didn’t want one of these – and I mean REALLY didn’t want one of these! I was given a schedule, told when my PICC line would be inserted and again, sent home. Everything is so matter-of-fact. It’s all done for you. You have absolutely no say in what is being done. You literally just have to do as you are told!

Throughout chemotherapy, I continued to receive support from Nessy. I asked her to check my open wound on my seroma but more importantly asked if I could check-in regularly with her for my own mental health. She said that this was absolutely fine and to just ask the ladies on the chemo reception to message her when I was in. She was there for me throughout my entire treatment and I am eternally grateful. She is an amazing person who makes time to listen and care. I have appreciated every single meeting I have had with her. Every single interaction has made a difference. Everything she has done has been in my best interests. It takes a very special kind of person to do the job that she does. When there have been difficult times, specifically during the delays in my chemo, Nessy has contacted the consultant to request further information and had success. I also questioned whether I needed to wait until April before I spoke with Mr C regarding the bi-lateral mastectomy. After speaking with Nessy, I had an appointment to see him in September.

On 20th September, I had to see the Radiologist – Dr G. She was a lovely lady and eventually listened. I explained that I wanted a bi-lateral mastectomy and she explained the process. During our meeting, she emailed Mr C and Nessy. She gave me a consent form but she didn’t sign it and told me not to either. Basically, she wasn’t comfortable giving radiotherapy if I wanted something else.

The Friday of the same week, Mr C’s secretary phoned me at 8am and said that an appointment was available that afternoon, after chemo, to meet with Mr C. I was anxious most of the day but got through 4 hours of chemo and then went to find him. Basically, I had to explain why I wanted a bi-lateral mastectomy. The issue was this: I could not touch my breasts; hadn’t been able to touch my breasts since diagnosis; this meant that I couldn't check to see if new lumps appear. Mr C explained that having this procedure would not extend my life – if it was going to spread around my body, it would already be in motion. He also explained that bi-lateral mastectomy, well – any mastectomy – was not recommended; however, he said that he would support me at the MDM. If at the MDM it was agreed, I’d have to see a clinical psychologist at Guy’s. Thankfully, when it was discussed at the MDM, it was decided that Mr C would be able to carry out a unilateral mastectomy on my right breast, the one that had the cancer. I would not need radiotherapy. However, I would need to see a clinical psychologist for the left, healthy breast. I fully understood why this needed to happen but it wasn’t like I hadn’t been saying the same thing all along.

Mr C referred me to Guy’s – I saw him about three weeks later. Unfortunately, when I rang Guy’s a few days later, they explained that my referral would not be accepted as I was not under their care. They were very helpful. I emailed Nessy and explained. I was also proactive and found a clinical psychologist online. Her name was Dr H – I completed the online form and found out more information which I shared with my breast care team. I felt that things were moving too slowly and so I also made sure I rang Connor, Mr C’s secretary to give this information and find out what was going on. I gave a few suggestions about how I might possibly access a psychologist (I made links to my job) and he seemed to take these on board. I explained that I was happy to pay for the assessment but I needed to know whether a private letter would be accepted at the MDM. I was assured that it would be.

On the 10th November 2023, I met virtually with Dr H. Lots of questions were asked particularly around body image. To be honest, I felt quite offended by many of these because I didn't care what I looked like after the surgery; I just wanted my breasts gone. It was felt that I was unsure about the chances of developing a primary breast cancer in my healthy breast and that its removal wouldn't extend my life. I couldn't be bothered to argue...I completely understood that I wasn’t really at risk of this. However, not having the breast there is something that mentally cannot be explained if you haven't experienced it. I don't care how good someone is at their job. I don't care what the research is. For me, they needed to go.

Dr H shared the letter with me after the weekend and I was generally happy with it. I asked for a couple of adjustments – nothing major – which she did. She then emailed it to Mr C’s secretary. My case was discussed at the MDM on 16th November 2023 and it was agreed that I could have a bi-lateral mastectomy. Oh. My. Goodness! This was such a relief. I’d been saying the same thing over and over again for months and finally, it was agreed that it could happen.

In the meantime, I had discovered a lump in my armpit. Nessy had referred me to Mr C’s clinic and he organised for me to have mammograms and an ultrasound. I did this on Friday 17th November 2023 with a meeting booked with him afterwards. I had the ultrasound but they couldn’t say what it was meaning I had to have biopsies. This made me very upset as we were all hoping that it was an unresolved seroma. I went to my consultation with Mr C and Nessy, and was very upset. However, he did explain to me, again, why I didn’t need to have the bi-lateral mastectomy. After that, we left. A week or so later, Mr C phoned me to say that the biopsies were fine and I had nothing to worry about – phew! The 4th December was on!

Monday 4th December 2023 came around very quickly. I was due to be admitted for at least one night following the surgery. All went well – I was given TIVA instead of gas and I woke from the anaesthetic with a very clear head. I had a couple of drains and was kept in for two nights. I felt absolutely fine throughout. I did develop a couple of seromas, one on each side, but these were monitored by Nessy and Fiona. They were not drained and appeared to be absorbing back into my body.

It was explained to me that now my breasts had been removed, they would both be put under a microscope to see if there was anything sinister in either of them. This wait felt like forever as it spanned Christmas and New Year. During this period, Nessy checked my wounds and seromas but everything was fine. She also fitted me with a couple of silicone prosthetics which, once everything had settled, I wear regularly.

I was booked to have a zoledronic acid infusion on Friday 5th January 2024 and had arranged to see Nessy just before this to have my wounds and seromas checked. Unfortunately, the infusion was delayed as my alkaline phosphatase was too high (most likely due to the medication I had been taken for COVID and my stiff back). However, I was also booked in to see Mr C on the same day to receive my pathology results. Thankfully, Nessy rang me in the morning and told me that I didn’t need to see him as she could tell me over the phone. I was visiting a school and in a meeting with my colleague, Claire, and a SENCO. I answered my phone and Nessy told me that there was nothing in either breast – they were clear. I stood in the communal area and cried! I wasn’t worried if any children saw me. I rushed back into my meeting and apologised, still crying, and I had to explain. Claire and the SENCO were made up. Once the meeting finished, I phoned Andy, and my mum and dad. Claire and I had a coffee and some cake and then I went to the K and C to see Nessy. That was it – there was no evidence of disease. Nessy told me to be aware of any changes in how I felt (this is the only way of monitoring whether the cancer has returned) and to live my life.

Since then, it’s been very surreal and quite hard to get my head around. For ten months, my life had been a whirlwind of appointments, treatment, check-ups, discussions with professionals, waiting – and then it just…stopped! Don’t get me wrong, it is good when that happens but so hard to get used to. It no longer feels that you are being looked after by anyone; you really do feel like you are on your own. Of course this isn’t the case – if I needed anything, I contacted Nessy who would organise for me to be seen by the appropriate professional.

The other thing that is hard to get used to is not thinking that every new ache and pain is the cancer returning. You have to rationalise things – not easy to do. I have been assured by people who have been through cancer treatment that this thinking is perfectly normal and should ease as time passes.

That chapter is an overview of my ten months of treatment. The following chapters go into greater detail about surgery, chemotherapy, wellbeing, words, and support.