Donna

My Journey started in May 2017 when I attended the GP Walk In Centre after finding a lump in my left breast.

I had noticed the lump whilst showering about 2 months earlier but after losing 2 stone in weight through gym sessions and healthy eating, my boobs felt different and after checking my right side I also found a lump in the same place too, so I assumed it was normal for me. After a while I started noticing the left side lump more and more, if my arm brushed passed it or while getting dressed. I asked my eldest daughter (she was 20 at the time) to have a feel in case I was being paranoid. She told me that it was probably nothing, but I should definitely get it checked out.

I was a bit nervous about going for the appointment but thank goodness she frog-marched me to the car.

Within a few minutes of my examination, I knew it wasn’t good news. As the doctor was examining me, he asked me to lay on my side, I could see his expression change.  He didn’t mess about and got me to register at that surgery there and then so he could request a 2 -week referral for the Nightingale Centre.

I had only ever checked myself either standing up or sat upright, so when I got home, I lay on my side. The lump felt much bigger and completely different to the one in my right breast.

The following week when I got a call asking me to go in on the 1st June, I told the lady I can’t possibly go as I am off to Benidorm for a hen party that day with 30 other women! The lady was adamant I attended and made my appointment for 9am so I could still be at the airport for 1.30pm.

I now had a problem though.  I was supposed to be staying at my sisters the night before as two of my sisters were also going to Benidorm with me and I hadn’t told anyone what was going on. I had convinced my daughter all was well after my GP visit. After trying to figure out how the hell I was going to get round this situation, I drove to my sisters with my suitcase the night before my appointment. I had to tell what was going on but swore her to secrecy, saying it’s just a check-up and that I would I be fine, so no point worrying people. I arranged for her to take my case to the airport and I would meet up with the rest of them there.

As I arrived at the clinic the following morning where my dad was waiting for me. My sister had spilled the beans!  After getting a lecture off my dad, in we went….

The first consultant I saw had a feel of both breasts and could feel the lumps on both sides, she told me she thought it was a cyst. Relieved I asked what would happen next and she told me they would drain it in a simple procedure but as I was there, I may as well have the mammogram and full MOT. I came out of the room quite relieved and told him my dad that there was nothing to worry about with a smile on my face.

I then had a mammogram, but they couldn’t see anything so had to then have a 3D mammogram. They then called me back in for an ultrasound. Each time I got called in to a room the doctors were laughing as everyone had heard I was in a rush and had a plane to catch. As I lay on the bed and chatted to the nurse during my ultrasound, I felt the mood change in the room. Trying to lighten the mood I tried to joke saying things like, it’s not as exciting as having a pregnancy ultrasound is it? No-one laughed this time. The doctor then turned to me and said they were concerned about my lymph nodes as well as my left breast, so they needed to take biopsies. Even though I tried to convince her to let me come back for the biopsies as I was about to get in my bikini but she wouldn’t allow it. There and then she raised my arm and started numbing the area.

The breast biopsy wasn’t too bad, but I bit down hard on my lip when she did the one under my arm! All I kept thinking was how am I going to walk back in the waiting room and face my dad!.

I finally left the room and approached my dad. He calmly said, not good news the?  and without looking at him in the eye. I shook my head.

The next four days in Benidorm were blissful, even though I could only go in the pool or sea up to my waist. I obviously couldn’t hide it from my sisters now as I had dressing on from the biopsies. They were really understanding and helped take my mind off things during our break.

I returned to the Nightingale on the 8th June 2017 when they confirmed that it was indeed cancer in my left breast and lymph nodes. As lovely as my consultant was and whilst he was trying to break the news very gently, my impatience got the better of me. I just wanted him to tell me yes or no. After what seemed like ages, I couldn’t stand it any longer and reached across the desk and held his hands. Dr I said, I’m not listening to a word you are saying, just tell me if its cancer? Still very gently and with ‘that look’ on his face he said I am really sorry Donna but yes it is. OK I said, now I am listening. What are we going to do?

I left the Nightingale and headed straight to Dunham Massey scout camp to complete the D of E bronze award expedition with the year 10 pupils from the school where I work. It was a great distraction.

It was a strange feeling knowing I had cancer but I didn’t feel any different in myself.

The following weeks were an endless blur of appointments from MRI scans, CT scans, bloods and consultations. I could no longer keep this a secret. My husband and I were already living separate lives and on the verge of going our separate ways which made it all the more difficult telling him. I knew that the next port of call were the kids who were 12, 16, 18 and 20 at the time. That has without doubt been the hardest thing I have had to do in my life. I told them individually and at different times with the elder two being first as my younger son was doing his GCSEs and my youngest daughter was towards the end of her first year at grammar school. None of them took it as I predicted they would. The two I thought would handle it crumbled and the other 2 whom I thought would struggle, took the news well. Watching my grown up 18 -year old bearded son crumble and break in my arms though absolutely killed me. That was the first time I actually cried since finding out.

Initially the plan was a lumpectomy and chemotherapy. However, after having all the test I went to an appointment with my consultant and he told me they suspected the cancer was actually in two places in my left breast. If this was the case, I would have to have a mastectomy. Fine I said, but if you take one breast, I want you to take both. Little did I know that there and then began my year- long battle!

After having a biopsy whilst in the MRI scanner (weirdest thing with my boobs poking through holes in the bed), I received a phone call confirming that the cancer was indeed in 2 places in my left breast. The lady explained though that they were willing to offer me a mammaplasty. Not knowing what this was I took to the internet to research it and deciding this was a good outcome rather than having to have to have a full mastectomy. I returned to my consultant where he explained the procedure and booked me in for the 4th August for the op.

I received a phone call whilst in work asking me to go and see my consultant the following day. As everything was all signed and set for my surgery I was confused as to why and questioned this. The lady explained that my consultant wanted me to have a scan to measure it the second site again.

My eldest daughter had been really upset with me for not allowing her to come to any appointments. I wanted to protect the kids for as long as I could. As I wasn’t worried about this appointment I  let her come with me and told her we would go for lunch afterwards. We saw my breast nurse, who has been my rock! and Demi (my daughter) was able to ask hlots of questions. She had even brought a list. It was an eye opener for me though as I hadn’t realised how much was on her mind so I was glad she got that opportunity. After having another scan to measure the lumps we went for a walk until my consultant was ready for me.

The appointment didn’t go as well as I had planned. He told me the second cancer had already grown and now a mammaplasty wasn’t an option. I now had to have a full mastectomy. As I sat put it it like that to me before and although I am fully aware how serious cancer is, I had never felt like it was going to win. I now, with my daughter sat next to me felt very threatened.

I had been continually battling with my consultant about the pros and cons of a having a double mastectomy.  He emphasised that I needed my surgery asap so I could start chemotherapy. I’ve got 4 children so had to put my battle with him to one side and listened. He promised once I had completed chemotherapy, we would then discuss a the right -side mastectomy. For once, I listened to him properly and told him to do what he had to do.

I was booked in for a full lymph node clearance and left side mastectomy on 26th July.

The surgery went well and I was allowed home the following day. Before I left the physio talked me through the exercises I was to do at home and gave me the booklet. I teach PE and attend the gym regularly, so these exercises looked babyish. How wrong I was I. I struggled like hell at first and would often have tears in my eyes and be sweating just trying to touch my head!. I need my arms to be fully working though to be able to do my job which I love, so I battled through. I developed cording though which was very painful and felt almost like there was a rope in my arm that was going to snap when I stretched. With guidance from the lovely physio though I learnt massage techniques.

it was then chemotherapy time!. I had been absolutely dreading this and on many occasions leading up to it had really wanted to say no I’m not having it, but I had to think of my kids. I had no choice. I was a mum and had to do everything it took to give me the best chance of recovery.

On the 15th Sept I had my first round. I was sick as a dog afterwards! I also had to inject my stomach every day to help my immune system. This was fine at first but as my body hurt more this became difficult. I ended up letting the district nurses come round to do this for me.

My veins had started to collapse so the cannulas which I had not previously been bothered about now hurt like hell. I started to dread them more than the chemo!. I had each round of chemotherapy on a Friday. For me I wouldn’t feel too bad afterwards but then by the Sunday it would knock me off my feet. I would feel dreadful for about 10 days then start to feel better for around a week before it was time for the next round. I had mine every 3 weeks. On my good days though I still went out and enjoyed myself. On one occasion, after round 3, I was so excited to be feeling ‘normal’ but as I was getting ready to go out, the rest of my hair started coming out in the shower!. I was distraught as it was all patchy and looked a mess. My nephew arrived while I was sat on the bed wondering how I was going to rock this look on a night out. I smiled at him and passed him the bic razor. He was scared to death bless him as I asked him to shave the rest of my head.

The thing I struggled most with though was feeling like I wasn’t fulfilling my role as mum. I would be so weak and my body would hurt so much some days that my daughter would cook tea and sort the house. This really frustrated me because,  although I was proud of how much she stepped up, I felt that it was  MY job and I hated seeing her having to do it.

I had my final round of chemotherapy on 29th Dec 2017. While everyone was out partying for New Year’s Eve I was home alone with my little French bulldog cuddling up in my bed scared of the fireworks. My dad was by my side through absolutely everything and was worrying about me being on my own. I sent him a selfie of me and bud (the dog) with me trying my best to look fine. When I look at that picture now, I think who was I trying to kid?

Throughout the process I didn’t feel 100% at ease with my first consultant,  as I didn’t think that he knew ME as a person and I felt continually frustrated with his reluctance to give the go ahead to do a further mastectomy on my right side.  After a few meltdowns, I managed to change my consultant with the help of my breast care nurse.

I knew from the first meeting with him that he understood ME as a person and not just what my medical file said.  After meeting with his team and finally being able to put my case forward they agreed to take it back to the board. The wait to find out was scary as I knew this was my last chance.

On my next visit he told me the others on the board didn’t really agree with the decision to take my right side off but he told them well you haven’t met Donna and she makes sense and had done her research so I am happy to go forward with it. I was so overjoyed that I jumped up and kissed him!!

I cried happy tears as it felt like a huge relief that I was finally going to be getting ME back. I work in PE and go to the gym regularly, so one boob that bounces and one that doesn’t just didn’t work for me. It was never about vanity (I’ve only gone for small boobs and not got nipples) but more how they behaved so I had the confidence to continue my life as I had before. My new consultant understood that.

I would say to anybody in my shoes that you have the right to have a say in your own journey and if that means switching your medical team to those that suit YOU as a person more then do it. This journey is not just medical, it’ also personal and it matters that who we are as individuals is recognised.

Almost one year after I had my left -side mastectomy, my right -side mastectomy was performed on 24th June 2018. They inserted expander bags on both sides at the same time which I had saline injected into every 2 weeks to stretch my skin ready for implants. I then had surgery to create my ‘new pair’ on 4th Jan 2019.

No they’re not perfect and they don’t 100% match BUT they behave the same way when I jump about so I am back to being ME!!. I will forever be grateful to my breast nurse for being by my side on this journey and giving me the confidence to switch to a consultant that understood me as a person.

There’s nothing I can’t do now 😊

Donna Burnett

Margo Cornish