Julie founded Treasured Chests Breast Cancer Support Group in November 2021. Here is her story, in her words:
"Life was going well for me and my family. I had started my dream job in July 2020 working for a mental health charity, my husband’s business was doing well and my daughter was very successful and happy in her career. In January 2021 I went for my routine mammogram, following this I received the letter asking me to come to the hospital for some tests. I remember chatting with the ladies, joking about this being my first “outing” of the year. A lovely doctor did the scan and requested to do a biopsy there and then. I took my daughter with me to get the results and we planned to go out for something to eat after. I sat in the office with the Breast Care Nurse who uttered the immortal words “I’m afraid it is cancer”. I couldn’t take it in, I looked across at my daughter and could see tears in her eyes. The rest of that appointment was a blur, my only concern was whether my treatment would be delayed due to Covid but thankfully they allayed my fears. It was confirmed I didn’t need chemotherapy and could be booked in to have the hormone led 18 mm lump surgically removed.
I rang my husband on the way home to tell him the news - worried about how he would take it. I made jokes and said that the prognosis was really good. I wanted to know how long it had been there, what had caused it, was it anything that I had done or not done. I then had to tell my friends the news. Again, I was worried about how they would take it. I kept reassuring everyone “I really am fine and it’s going to be okay” repeating that they had caught it early and prognosis was good.
On 21st February 2021 I went into the Spire Hospital, as the N&N were only taking emergencies due to Covid. My husband could only drop me off in the car park and I trudged in. Turning back to smile at him, I waved and said “see you on the other side!”. I felt like I was walking in to a five star hotel at The Spire. As I walked in to my room, I was greeted by a nurse and a huge hamper which had been provided by a cancer charity. My Consultant came in - a small man with incredible shoes on (funny the things you notice), marked me up with a pen, told me what was going to happen and then handed me over to the anaesthetist. An hour or so to wait, I rang my daughter and husband, keeping myself as upbeat as I could for them, joking about my green support stockings. Then down I went to theatre. All went well, I woke back in my room and even managed to get myself to the toilet. In the early hours of the morning, during my obs, I began to feel really odd, light headed and floaty. I tried to sit up and felt very faint. All of a sudden my room was filled with people and I remember thinking this isn’t good. "
"My Consultant came in to see me and explained that I had haemorrhaged and was being taken back down to theatre. Another operation and a blood transfusion and I was again back in my room. My Consultant came to see me again, apologised and said “this has never happened before”. I made some joke about being a problem and went back to sleep. I was in for four days and had the most amazing care. I came home, exhausted and sore with two drains and appointments for district nurses booked. I slept for a couple of days on and off. On the third morning, I got up and again felt very odd. Fortunately my daughter had not yet left for work, she took one look at me and got me back into bed. Next thing I remember the paramedics were around me asking me all sorts of questions as I drifted in and out of consciousness. I stayed in hospital for two days. The conclusion was that I’d had a bad reaction to Oramorph.
I stayed off work for six weeks and watched a lot of Netflix. Radiotherapy was booked and these sessions finished in May 2021. I was exhausted after the sessions and felt frustrated that I could not do as much as I wanted to. I had always been a busy person, always doing something and now I couldn’t do much at all. The decision was made to put me on Tamoxifen for 10 years, a type of hormone therapy. The side effects were horrible but, I kept thinking, at least I’m alive! Suddenly everything stopped. I felt like I had been on a whirlwind for the past five months, my life dominated by appointments and treatment and then… okay, we’ll see you in a year for your next mammogram. Right, I thought, what happens now? Because of the site of my scar (which goes from under the right breast up to the middle of my armpit) I couldn’t wear a bra. Being at home for the past few months, it hadn’t bothered me at all. All of a sudden I was going out and felt very self-conscious. I didn’t recognise myself any more. This wasn’t about the scar itself - that really didn’t bother me. As I hadn’t been able to exercise, I had put on weight. The Tamoxifen made me looked bloated in the face and, almost overnight, I felt like I had aged 10 years! It’s alright though, I kept telling myself, “you’re alive, they caught it early and prognosis is good”."
"I desperately wanted to talk to other ladies who had breast cancer. My friends and family were supportive but didn’t understand in the same way. To the outside world, everything was fine. I was back at work, not feeling depressed and looked "normal". I searched for local support groups that I could join. I was aware of the Big C and Star Throwers (both of which are excellent) and had used them, but this wasn’t quite what I was looking for. I couldn’t find anything nearby and really didn’t want to go back to the hospital after spending so much time there during treatment. Right, I thought, I’ll put a post on the local Facebook community page to see if anyone knows of anything locally. In my mind, I envisaged a few of us getting together for a coffee and a chat once a month to share experiences and support one another. I had a few responses which was really encouraging and set about arranging an online meet up. From recollection, we had about six ladies at that first meet up. We shared our breast cancer stories, had a laugh and chatted about families.
Word spread and we were offered local spaces where we could meet in-person. The group grew, we needed a name - Treasured Chests Breast Cancer Support Group was born! I could never have imagined what we would have achieved during the past two years. Nadine was one of the original members and stepped up to help me run the group, Gabby became a member and then offered to join the committee. We all juggle home, group and work commitments between the three of us. We have some amazing stories of members who bravely made the decision to come along to one of our meet ups, not knowing what to expect. They were very low and suffering with the aftermath of treatment, desperately needing support. These ladies now help our new members.
I can’t say that I feel back to where I was before cancer - in some ways I don’t think I ever will be. A lot has changed. I really believe that something positive comes out of a negative, cancer and Treasured Chests has made me a lot more confident and brought me into contact with some incredible people, receiving support from strangers and making great new friends. I am incredibly proud of what we have achieved in a short amount of time. Sadly, the need for groups like ours will only continue to grow but if we can make this journey a little bit easier for people, then we have achieved what we set out to do (with bells on!)."
Nadine has been part of the group and Julie's right-hand woman since the group was created. Here is her story, in her words:
"My story starts in June 2021 when I had found a small lump in my left breast which I was sure was a normal hormonal cyst. I decided to get it checked out and while it was confirmed to be a cyst, the mammogram also identified a secondary area of concern. An ultrasound confirmed it to be a 13mm mass and I had a biopsy to get more definitive answers. One week later I was told I had a malignant tumour which was grade 3 (the fastest growing) and "Triple Negative" i.e. not using hormones to grow, a type known to be extremely aggressive. To be honest, my whole world crumbled around me. With the support of my family, I was able to find the strength to fight this demon that became a part of me. "
"About 3 weeks after my diagnosis, I had a lumpectomy with sentinel node biopsy and began my recovery at home. On the 9th of September 2021 my consultant confirmed he was able to get clear margins but he had taken a further 22mm from around the tumour site. My lymph nodes were clear and no cancer cells were found in them. I was pleased that the cancer had not spread but apprehensive of the treatment lying ahead of me. My fears were confirmed when I was told I needed to have Chemotherapy and Radiotherapy. My oncologist had made a plan for 4 rounds of chemotherapy in a 3 week cycle, consisting of two drugs Docetaxel and Carboplatin. The plan also included 10-15 days of radiotherapy after the chemotherapy had finished. Chemotherapy started in October 2021 and my life became an endless diary of appointments, blood tests, steroids and side effects of the drugs - losing my hair being one of them. The side effects were not pleasant but I knew this treatment was giving me the best chance of killing those nasty cancer cells."
"I was nearly at my last round of chemotherapy when I stumbled across a social media post looking for women who had been in treatment for breast cancer. As I had been diagnosed during the pandemic, I was unable to use the services provided by the local NHS trust as these were closed. So, I messaged back and this is where I met Julie. A few of us got together online for support and general chats. The ladies I met had already undergone treatment and I felt it was a good support for me, to learn from their experiences. I knew I had radiotherapy ahead of me and they had already been through it. I was relieved to be able to talk to others that had similar experiences and suffered the same side effects as I did from my treatment.
I continued on in my journey with the support of my new friends at Treasured Chests and I completed 10 days of Radiotherapy in February 2022. I never realised, until I had my diagnosis, how resilient I actually was. I continued in my recovery and in May 2022 I was given the good news that no evidence of disease could be found. I am in remission from Breast Cancer. I will be under the close watch of the Breast Care Team but for now I continue to live my life to the fullest and enjoy every minute of it. I am back at work, I spend lots of time with family, my soul mate Wayne, friends, and I give my spare time to Treasured Chests where I have formed some great friendships with other ladies and long may this continue."
Gabby is the newest member of the committee. Here is her story in her words:
"I was 35 years old and asking the doctors to refer me to the breast clinic again, the second time in less than 12 months. The first time I had gone because I noticed a change in my breast, a new indentation. Breast cancer was quite prevalent in my family so I was brought up to be "breast aware". The first time round, the ultrasound showed hormonal tissue at the 11 o'clock position and the dimple was put down to hormones as my daughter wasn't even 1 year old at this point. When pushing for the second time, I really knew something wasn't right as my breast started becoming hard, I was exhausted all the time and in a lot of pain (which I was told was a good thing as 'pain isn't usually associated with breast cancer'. My second visit to the clinic was different, as I was 35 they were now willing to give me a mammogram as well as an ultrasound as a precaution. My ultrasound was unremarkable, didn't show them any cause for concern. The mammogram lit up like Blackpool illuminations. My tumour was 45mm and situated at the 11 o'clock position, exactly where I was concerned about previously. There was also 90mm of scattered calcifications, the problem was much bigger than just the tumour. A biopsy was taken to confirm it was grade 3 but the Dr told me there and then that she believed it to be breast cancer. I received my official diagnosis on 15th September 2022."
"The fact nothing was shown on my ultrasound made me realise there was probably something growing the first time, but at 34 I was 'too young' to be considered for a mammogram. A rule that still makes me extremely angry. What if I hadn't gone back the second time, just took it as being fine?
The next month flew by in a wave of emotions mixed with multiple tests. My treatment plan was set: 7 Rounds of Chemotherapy, double Mastectomy (left side cancer and right side risk reducing) and 10 years of hormone treatment (Tamoxifen and Zoladex) as my cancer was hormone positive i.e. using my own hormones to grow. I would also need 17 rounds of targeted therapy (Herceptin) as my tumour was HER2 positive. Later, after my double mastectomy, I would find out I also needed Radiotherapy which I think was the biggest blow of all. No-one had ever mentioned this being part of my treatment plan and just when I thought it would start calming down, I was now preparing for more treatment. I was crushed, my daughter was barely a toddler and I felt like I was missing out on so much. I was there as her mummy but not fully in the way I wanted to be. There were several times when she got sick while I was going through treatment, as I was immune compromised I should have isolated from her, but that was never going to happen. It was determined that cancer or not, I was a mom first and foremost."
"Looking back now, I'm not sure how I got through the treatment. I'm extremely lucky to have a supportive husband who was my rock. They say in difficult times you really learn what people are made off, well he is made of steel and I'm so lucky to have his love, support and couldn't have chosen a better father for our little girl.
Going through treatment, trying to keep a career and raising a toddler is a lot of plates to juggle. My oncologist could tell I was struggling to process it all and asked me to contact Macmillan to see what support was available. Macmillan emailed me a list of local groups and there is was; Treasured Chests. I was delighted there was a group local to me. I was so nervous that first day walking in, but the ladies were lovely. Straight away I felt like a weight had been lifted. The difference the group has made to me, and my processing of the whole experience, is something I will never be able to fully explain, but I will be forever grateful."
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