Emotions and Well-being

The next time I was really upset was when I looked up triple negative breast cancer on the Macmillan and Breast Cancer Now websites, I scared myself shitless. All I could think about was the fact that I was going to die – don’t forget that I didn’t know what the treatment plan was going to be and I hadn’t had any surgery at that point. I also didn’t know what the HER-2 result was so wasn’t even sure that I was triple negative. This was the same day that I realised I didn’t like the word ‘journey’ (7th March 2023). I was given the HER-2 result the next day and I cried and sobbed and screamed and shouted and found it very hard to calm myself down – I just wanted the ‘thing’ out of me; I broke down on the phone to my mum and dad saying “It’s going to kill me!” My sister-in-law Rachel messaged me about a friend of hers who had triple negative breast cancer and is now six years down the line – Scarlett has been at the end of a What’s App message the whole time and I have been so appreciative of this. I spoke with my GP at this point who prescribed me diazepam for a short amount of time – I just had this constant feeling of despair. I couldn’t get past the fact that I thought I was going to die and was so sad; I couldn’t smile; I couldn’t concentrate. This medication was reviewed a little while later and he gave me more but I didn’t take all of them. I didn’t want to remain on medication for this as I was now living my ‘new normal’. I knew I needed to try to find my own way.

The day that I found out I had triple negative breast cancer was the day I was questioning why a lumpectomy was my only option. I wanted a bi-lateral mastectomy – well, I didn’t as I didn’t want the operation, but I mentally needed to have it done and I fucking had cancer. As time progressed, I found it very difficult to touch my breasts to check them. I absolutely hated them, despised them in fact– I just felt that they were trying to kill me. I knew me; my mind wasn’t going to change. All the way through, I was told that I may change my mind and so I must wait. All the way through, I was told that a bi-lateral mastectomy wasn’t warranted. However, my mind wasn’t going to change and I talked about it as often as I could to the professionals involved.

The first time I really mentioned the bi-lateral mastectomy was when I had my initial consultation with Mr C and Nessy although I did ask why I wasn’t having a mastectomy when I met with Wendy on the day I was diagnosed. I can fully understand why they believed I may change my mind – I was in such a state when speaking with them and I would assume it looked as though I wasn’t of sane mind. I had a complete anxiety overload that day. Although the response was a ‘no’ on that day, it didn’t appear to be a ‘no’ forever. It was clear that once the treatment was out of the way (once I’d done as I was told), we could revisit the idea of a bi-lateral mastectomy.

The days between the consultation and lumpectomy were generally positive. I had a plan and I knew what was going to happen. I’ve realised as the process/treatment plan progressed, I absolutely need to have a plan; some kind of way forward; a structure. When things went wrong, such as delays during chemo, I did not cope at all well. I’d go from positive emotions to negative emotions in a matter of seconds. I knew I had always needed a plan of some kind when working etc. but not quite to the extent I was displaying. I also realised that I needed control – this process has taught me that you have absolutely no control over anything and when you do try to take some for yourself, it generally comes back to bite you on the arse!

For the week following the operation, I was absolutely fine. Positive, ready to get things moving. I saw my GP Practice Nurse eight days after the op and my mood changed. I cried and I had no real idea why, other than the fact that she was the wife of Mr W, the breast consultant who gave me my diagnosis – Nurse Justine asked if it was her husband who had done the operation and it felt like she was going to tell him off for leaving me so bruised : ). Nothing else had changed other than I could see what had been done to me and that it was healing really well. I think it was because the Nurse was so lovely and I felt like I was in a safe environment to let my emotions run free.

I would also have really positive days with work. I love seeing the kids I work with and the adults who support them. The days would be great. It was when I went to bed. Often, I’d go to bed and just lay there and sob. There was no particular reason for it other than I needed to. Another time that this would regularly happen was in the shower each morning. I’d cry for ten minutes then sort myself out and crack on with the day as if nothing had happened.

Being a teacher, I had to contend with school holidays. These generally didn’t go so well for me. They gave me time to think about what was happening to me and not be distracted by work. The first break was the Easter holiday – it was the second week of this that I realised holidays were no good for me and I began to worry about the long, six week summer holiday – I still had another half term to get through before that. I did find that going for a walk was helpful for my mental health but I increasingly spent time thinking about cancer as I trundled along. I found that I could distract myself with certain types of music (Born Slippy by Underworld was the best) as I would listen to and think about the structure of it. I made a playlist, with the help and suggestions of my friends and family on Facebook, called Fuck Cancer Bangers! I still listen to it to this day and now know the order off by heart.

The day that I had my results (informally) was one of the most challenging I’ve had. This was Thursday 13th April 2023. I had raging toothache and was generally stressed all day. This must have been because I was exceptionally anxious about what had been found. I was absolutely sure that the cancer had spread to my lymph nodes and that I’d need further surgery and scans. However, Breast Care Nurse Fiona phoned me at 3.08pm and said that my results were “excellent”. The margins and nodes were clear. I received my formal results from Mr C on Monday 17th April 2023 and got more detail. From this point on, I felt calmer – not necessarily positive, but calm, rational, ready to think things through. I also knew that the next stage was going to be chemotherapy and as I’ve said earlier, this didn’t scare me as it was an absolute necessity.

When my seroma burst a few days after getting my results, I got upset when I was at A and E. All I could think about was the fact that it may get infected and delay the start of chemotherapy. The doctor I saw understood this and gave me strong antibiotics. I did not get an infection in the seroma. However, each morning when I looked at what had leaked, I cried – a lot. The anxiety was completely overwhelming and I frequently cried – I didn’t show this to anyone and kept it to only crying when I was in the bathroom on my own in the mornings; this was when my mum was staying with me. It helped seeing Nessy when she was checking the open wound over the next two or three weeks.

I also got upset when I had the results of the genetic test. I was informed that I didn’t have a faulty gene. In my eyes, this meant that I wouldn’t automatically get the surgery I so desperately wanted. However, this was quite short-lived as it was extremely good news for my family and I realised that I was being totally selfish (in my eyes, this was understandable).

The main piece of advice I’d give to anyone going through cancer treatment is try to sleep. It doesn’t matter when you have it but just sleep. When I didn’t sleep very well, my negative emotions were heightened and I found it hard to rectify this. I’d stay in a pit of despair and say things that were very negative. If I’d had sleep, I’d be able to just think the negative things without verbalising them and then make those thoughts go away for a short time.

As stated throughout, I felt that my mood was generally ok. I don’t tend to write about these as much because that is what I wanted as the norm. Being upset and negative was generally caused by something. The next time that I was upset was when I had my hair cut off very short. I’d had my hair cut from shoulder length to short just after receiving my surgery results. This did not upset me; in fact, I loved it. However, when I had it cut very short on Wednesday 10th May, I did get upset. I think this must have been because I was getting close to chemotherapy and this part of the treatment plan was the most extensive and life-changing.

When I started to do some of the ‘last things before chemo started’ such as going to the pub and visiting the last school, I’d get upset and cry. I’m not sure why because chemo wasn’t going to be forever; it was only going to be for a few months. It’s just that I knew what I would be like with keeping myself safe and that I wouldn’t be seeing anyone for a while.

The first time I felt angry was when I got told that I would be having a PICC line inserted. This was one thing that I didn’t want. Each time I thought about it, I felt sick. I couldn’t see how I was going to get through the next few months with that thing in my arm. I wanted to try to do the chemo with needles but I was (easily) convinced by Andy and the nurse that the PICC would be the best thing and would save my veins. I knew that I would be stupid not to have one but I really didn’t want it. I cried when it was inserted and didn’t want to talk to the person putting it into me about my job – that is unheard of as I love talking about my job. I literally just stared silently at the ceiling or the wall, shaking my head when she spoke to me, crying throughout. The whole time I had ‘Doris’ in my arm, I hated it but at the same time marvelled at how good this piece of kit was. I think I hated it because I didn’t like looking at it going into my arm. Thankfully, I reacted to the dressings they used and so I needed to have a solid brown plaster on meaning I couldn’t see it. I also stopped looking at what the nurses were doing when they changed the dressings or flushed the line. Vile, horrible thing! A constant reminder of what was happening to me. A constant reminder of the restrictions and the lack of control I had over my life.

The day after being told I would have a PICC line was when I shared the words post on Facebook. I think I was still very angry about needing to have a PICC, I hadn’t slept well (just under three hours) and I was completely fed up. I also had counselling that day – I was very angry and this came across. Martine was so lovely.

Chemotherapy started the day after my PICC insertion and I can honestly say that the chemo itself didn’t upset me. It was the delays. I had a few delays and each time I got extremely upset. My family saw it. Some of my friends saw it. Professionals saw and heard it. I was completely inconsolable. I couldn’t handle the delays and I was never entirely sure why. I think it was because the reasons for the delays – low neutrophils – were completely out of my control. There was absolutely nothing I could do about it. I tried to help my immune system by eating different foods but that just made me put on weight and I wasn’t happy about that. I was told by professionals on a number of occasions that I needed counselling or medication to help me – I didn’t. I just needed to get on with chemotherapy so that I could get to the end of the ‘shitshow’ and get back to work without the cancer returning during this part of treatment. I also just needed to be listened to. Nessy was the only professional that understood this and agreed that I didn’t need any other intervention.

I knew that I needed to work throughout chemo. I was lucky in that my job could be carried out remotely and so I could carry on as long as I felt fine. It was after the third delay that I realised I couldn’t sit at home all the time. I spoke with Nessy, my mum, Andy, and some of my work colleagues about visiting one school each week. I would choose which one it would be as I knew where the staff would keep me safe. I knew the pupils I would be visiting and whether or not they would understand why I needed them to stay away from me. It was also the end of the summer holidays when I had the two delays following my first single paclitaxel session without any G-CSF injections so I think this made it even more difficult for me – too much time to think! Although I had these visits booked in, I never made it to any due to illness becoming prevalent in schools and the staff constantly looking out for me and telling me “no!”

I think the biggest emotional set-back I had the two-week delay trying to get to the end of the first paclitaxel/carboplatin cycle. I had managed Cycle 1 Day 1, administered the G-CSF injections and got to Cycle 1 Day 8. After this paclitaxel infusion, I had no injections. As I’ve stated in this document earlier, I knew that I would need them. When I had the first delay with neutrophils of 0.9 on Wednesday 16th August 2023, I asked if I could have a blood test the next day. That wasn’t allowed – policy! I felt that I wasn’t being listened to at any point and this made me upset and stressed. I really don’t remember the next day – I was so upset. I did manage to speak with Macmillan who suggested I speak with Nessy. I did this on the Friday and she tried hard to get me the G-CSF injections. In fact, she said that an email had been sent. I was told by two or three of the chemo team that they dreaded telling me anything bad because of how I’d react…I laugh now as I must have got a name for myself!

I did not expect to have a second delay on Wednesday 23rd August 2023 as this did not follow the pattern of my previous bloods – my neutrophils had worsened and were sat at 0.7. I thought I had managed to stay calm having spoken with Nessy on the Friday. However, I’d had a follow-up consultation with Dr N on the Tuesday (the day before pre-chemo) where I really needed to fight for the G-CSF and felt that I wasn’t listened to. He did eventually give me two days each week – that was it. That wasn’t going to be enough, I knew that and I got very upset. I cried on the phone with him, I cried whilst I was driving to pre-chemo the next morning, I cried with the staff, I cried with Nessy. Never in a million years did I think that I’d be delayed that evening but I was. Poor Louise the chemo nurse found it hard to give me the news. She’d already sent an email to Dr N and Nessy. Nessy phoned me the next morning and managed to get three days of injections. I put the blame for this delay solely with Dr N.

I’ve already spoken about this at length in a previous chapter so don’t want to dwell on it any further. I will say that this was the most stressed I have ever been since receiving my cancer diagnosis but I made a conscious effort to chill out – it worked! My neutrophils rose to 2.3 in a week – I was very pleased with that which meant that chemo was back on track. All I needed to do was see whether the three days of G-CSF would be enough to see me through each week but I had to realise that I couldn’t get myself stressed as this seemed to be really affecting my neutrophils and white blood cells. I needed to stay as calm as I could – easier said than done.

I will say that having to fight with an oncologist is utter rubbish. I can honestly say that his response is what stressed me out so much during chemotherapy. Try to put yourself into my shoes and understand what I perceived was happening – I wasn’t having any side effects that chemo is ‘famous’ for (nausea, mouth ulcers, skin problems, gut problems etc) – I felt absolutely fine with the exception of being a little tired for a couple of days. Imagine my frustration at being delayed when it’s just my bloods that are causing the problem because I was neutropenic, knowing that G-CSF injections could fix this. Imagine the ongoing frustration I had when dose reduction is spoken about – when you’re not ill, just neutropenic (although this is very serious), and G-CSF could fix that! So frustrated – frustration is the emotion for this paragraph. All I wanted was to be listened to. I received a text from my GP surgery on Monday 18th September 2023 asking to have a consultation with me because of a letter they had received from my oncologist. I thought, oh – it’s because I’ve said I want a bi-lateral mastectomy. Oooh, no!. I received a letter on Wednesday 20th September 2023 from Dr N – laughable really! It was written to my GP suggesting that I was ‘overwhelmed’ (well, yes), and ‘stressed’ (I have cancer, who the fuck wouldn’t be) and not coping (I’m not being listened to for a start, by him anyway). He suggested that I needed antidepressants and that I’d been open to it during our discussion. I was so angry with the letter that I could only laugh. It felt like I was making up the fact that the side-effects weren’t there; it felt like he was making me out to be some sort of insane psychopath; it felt like I was wrong thinking that I hated my breasts – good grief, how could any man ever understand the way a woman feels about her breasts when the damn things are trying to kill her. How dare he! The reason I was so stressed during chemotherapy was because of Dr N – simple as that. I did not have an issue with chemo – I needed to have it, that was the end of it. I did not want a dose reduction. I did not want delays – I wanted it done (why on earth would I want to draw it out – I wanted to get back to work, properly) with the best possible outcome.

On the same day that I received this letter, I had seen the radiotherapy doctor. She listened to me and said that because I was clear that I wanted a bi-lateral mastectomy, she wasn’t comfortable giving me radiotherapy. Neither of us signed the consent form and she explained that she would be part of the multi-disciplinary meeting where I would be discussed. She also emailed Dr C and Nessy whilst I was sat there. That was it – she listened to me. She didn’t think I was insane. She did explain lots of things but she didn’t think that I was insane. I was so grateful that she listened to me – after all, that is what I wanted.

Once chemo had finished, I moved on to talking about the bi-lateral mastectomy. This was the one thing I had said I wanted all along and now was the time to fight. However, I'd found a lump in my armpit which was likely to be an unresolved seroma. I reported it to Nessy who got me an appointment with Mr C in his clinic. He thought the same as me but ordered an ultrasound just to check. In the interim, it was agreed that I'd have the bi-lateral mastectomy and I would need two mammograms. That day came. The mammograms were clear but I couldn't be told definitively what was in my armpit. Biopsies were taken and I became extremely upset. I then had to see Mr C and Nessy, still upset. I’d not had time to process what was happening. It ended up with Mr C suggesting I need therapy. I really don't, I just need time to process. I talked this through with my counsellor and she agreed. I’ve realised over the last year that I require processing time – to be fair, when you have cancer, it takes a while for that to sink in!

The Look Good Feel Better courses have been amazing and worked wonders for wellbeing. It’s amazing how speaking with people in a similar situation as yourself can help lift you. It’s also incredible that being taught little tricks about looking after yourself, whether it be with make-up, hair, styling, nails etc., really helps with your mental health. Additionally, being able to access reflexology through a referral to The Harmony Trust (by Nessy) has been great. I have accessed six free sessions with a local reflexologist called Nathalie and they have been superb. Once these finished, I continued paying for them myself. I had reflexology the day before pre-chemo on Wednesday 30th August 2023 and I’m sure this helped to calm me down even further and raise my neutrophils even higher.

As I write this cancer story, I’m beginning to reach some of my first year anniversaries. This is very strange and I’m not quite sure how I feel about it. The only thing I do know is that I have to keep going and not let myself dwell on it too much. The anniversaries are always going to be there and dates will stick in my head for years:

• 5th February 2023 – finding the lump in the shower, purely by accident.

• 10th February 2023 – seeing the Nurse Practitioner and her telling me not to worry as 90% of the time, it’s nothing.

• 23rd February 2023 – having the mammograms, ultrasound and biopsies.

• 3rd March 2023 at 5.20pm (it was a Friday) – diagnosed with Stage 1 Grade 3 cancer which was suspected to be triple negative.

• 4th March 2023 – hitting my 6-stone weight-loss target (well done on achieving that; have cancer as your reward).

• 13th March 2023 – meeting Mr C and Nessy for the first time.

• 20th March 2023 – lumpectomy.

• 17th April 2023 – results.

• 24th May 2023 – PICC line inserted.

• 25th May 2023 – Chemo started.

• 27th October 2023 – Chemo ended.

• 4th December 2023 – bi-lateral mastectomy.

• 5th January 2024 – histology results.

These dates literally just roll off the tongue. I could add the dates of the two delays in August that I knew would happen (16th and 23rd) but I won’t 😊. I’m sure that I will eventually forget some of these as the years pass but for the time being, they are etched into my memory.