Charli’s story – how she managed anxiety and depression to complete her course of chemotherapy
Charli remembers as a teenager, being shown how to check her breasts by her nanny Helga and this is something that she did regularly, even after her nanny sadly passed away from breast cancer. On the 3rd November 2015 aged just 27 Charli found a lump, about the size of a pea, situated near her left armpit.
This is her story in her own words of the pressures it made on her own mental health and how she managed anxiety and depression to complete her chemotherapy.
The next day I had an appointment at the doctors, and I was referred to the hospital for further tests on the 13th November. I had a mammogram, ultrasound and biopsy. When they said they needed to do a biopsy I knew that they had found something as if they hadn’t surely, they wouldn’t need to extract anything for analysis. I pushed it to the back of my mind thinking I’m 27 years old, I can’t have breast cancer.
After the painful biopsy I was called into a consulting room. I saw the comfy chairs and the box of tissues and it hit me full force. Before anyone could say ‘I’m really sorry to tell you but…’ I was in floods of tears. I had to return in a weeks’ time to get the results and confirm what I already knew. I phoned my mum, who being the very positive person she is, tried to reassure me that it might not be breast cancer. Mum spent the week trying to be optimistic for me and making sure I was distracted.
I returned on the 19th November and sat in the same waiting room with the same box of tissues. The surgeon and breast care nurse came in, sat me down and confirmed that it was HER2+ breast cancer, stage 3, grade 3. My whole world had just collapsed. Cancer is one of the scariest words in the world and I was told that I had breast cancer aged 27, with two toddlers. My immediate thoughts were how do I tell my kids?
The breast care nurse gave me a book to read to the children which explained my diagnosis in a way that they could understand. I sat down with them, read them the book and told them that the mummy in the story was now me and that I would be ill for a while.
Fairly soon after I was diagnosed, I set up a public Facebook page called Charli’s Fight where I documented every step of my journey. I wanted people to see that cancer didn’t have to beat you; even if you can’t beat the cancer in general, it doesn’t have to change you as a person.
I needed to have a mastectomy as soon as possible as there were five tumours, the largest measuring 5cm. This was performed one week before Christmas which was upsetting as I couldn’t do all the special things I wanted to do for my children. I managed to spend Christmas Day with them but then spent the week after recuperating at my mum’s house because we were worried that my youngest child might knock my stitches by accident.
The heart shaped pillow that I used straight after surgery really helped as it meant I could put that between my arm and my chest, and it meant I wasn’t knocking my scar. They are amazing and are donated by the volunteers who knit them.
Recovering from the mastectomy was almost like a grieving process. When the bandages came off, I couldn’t look at myself and it was a week before I could stand in front of the mirror only to be confronted with a huge scar where my breast once was. I went through anger, frustration, sadness and my poor mum and best friend got the brunt of my extreme mood changes. It was a difficult time for everyone.
The New Year had arrived, and I was coming to terms with the mastectomy. I then received a phone call from the hospital asking me to come in. My mum and my best friend joined me, and the surgeon told me that the cancer had spread to three of the five lymph nodes taken during the mastectomy. This meant I would need another operation to clear the remaining lymph nodes. The thought of another operation and more recovery time was upsetting.
The 18th January came around and I had the lymph node clearance. My surgeon was brilliant and managed to cut back into the mastectomy scar, just slightly elongating it under my armpit. The results came back clear, fortunately the cancer had not spread to the other lymph nodes.
I started FEC-T chemotherapy on the 6th February. The first round was bearable; I experienced flu-like symptoms, loss of appetite and lethargy. But along with the second dose came sores around my mouth, weakened nails, hair loss and due to the steroids, I had put on a noticeable amount of weight.
I decided to do a charity head shave before I lost my hair completely. I had my hair put into dreadlocks and each dreadlock was sold individually before my head was shaved. My friends and family held buckets at the event and in total we raised just over £1,000 for Macmillan Cancer Support. It felt great to support them after the support I had received from their helpline and Homestart volunteer service.
Being offered headscarves on the NHS as an alternative to wigs would have helped me. Even though I had a good range of wigs, I found them uncomfortable and too hot to wear in the summer, so I bought myself some headscarves instead. However, as a self-employed businesswoman even spending £5 on a headscarf was a push when I couldn’t work during my treatment.
The chemotherapy side-effects continued to worsen and by the third round not only had I been hospitalised twice due to my white blood cell count being so low, all my fingernails and toenails had fallen off from the nail bed. I was also experiencing deep bone ache and had a constant oral thrush.
I was more upset about losing my nails than I was about losing my hair as I never really bothered doing too much to my hair, whereas every month I would get my nails done at a salon. More than that, you don’t realise just how protective your nails are to the skin underneath, just doing up the buttons on my jeans would make my fingertips bleed so I wore latex gloves to stop me from getting blood everywhere.
My anxiety and depression disorder was making it harder for me to continue with treatment. It was like a devil sat on my shoulder constantly telling me I couldn’t cope.
I hit a wall. I was lying in bed having vomited for the fifteenth time that day and although I hadn’t eaten anything other than ice lollies for three days, I’d put on a stone in weight in that 9 weeks, so my clothes no longer fit me. I felt awful.
I was just so low, and I couldn’t see a way through the last three rounds of chemotherapy. My then husband tried to encourage me to carry on, if not for myself then for our children. But the chemotherapy felt like it was attacking every single part of my body.
My oncologist phoned me, my mum came over and everyone tried to convince me to carry on with treatment. I was still of the belief that it would be better for me to spend the time I had left with my family rather than in hospital with a poor quality of life.
My best friend came over unexpectedly to announce that he had booked the two of us a 5-night holiday to Gran Canaria. I had an amazing time and it was just what I needed. I came back from holiday with the mindset that I wanted to experience more of life and so I would carry on with the chemotherapy.
On my return, I had a meeting with my oncologist. It was decided that I would receive an 80% dose for the last three rounds of chemotherapy which made it easier to manage. The moment I rang the bell to signal the end of my chemotherapy is something I will never forget.
I had one month to recover before I started radiotherapy as my white blood cell count was so low. In that time, one of my children contracted chicken pox and as I wasn’t exposed to chicken pox as a child, it compromised my immune system so much so that my temperature measured 42.5°C at the time I was admitted.
The radiotherapy itself was an absolute breeze compared to chemotherapy. I was fortunate that my sessions were at 9am every day so I had time to sleep at home before collecting the children from nursery.
On the 20th September 2016, I was told there was no evidence of disease and it felt like I had been handed £1 million and told it was tax free! That was it, it was all over and done with!
Only a few months after my all clear, my husband and I made the mutual decision to split up and I moved out of the family home as it had been adapted for his use. I was still close enough to visit our children but due to the move, I did not receive any invitations or referrals to support groups. I joined Cancervive, where people with different types and stages of cancer meet once a month to chat over tea and cake.
I have met people who were as young as twenty-one when they were diagnosed. This is one reason I am campaigning for the breast cancer screening age to be reduced to twenty years old and for the screening method to be an ultrasound for that age group. I was only two days away from my 28th birthday when I was diagnosed, and the mammogram didn’t detect the largest tumour as my breast tissue was too dense.
People still message me saying that after seeing one of my Facebook posts, they checked themselves and found a lump. I have lost count of the people who have said if they hadn’t found it at that point it would have progressed to the next stage quickly. I keep in touch with a few of them even now, almost four years on.
My surgeon told me I had a 1% chance of falling pregnant due to the chemotherapy, so it was a huge shock for both myself and my current partner when we found out that I was expecting! I called my consultant, left a message for her and when she rang me back, she burst in to tears of joy saying, ‘I remember you, I remember I said it was very unlikely you’d get pregnant’. She went on to tell me that the radiotherapy may have affected my ability to breast feed, I was unphased by this as I wasn’t able to breastfeed my other children.
Three days after I gave birth to our daughter, I woke up and my top was soaked. It was milk! I panicked and called the midwife who arrived twenty minutes later. Our daughter latched on and I breastfed solely for the next three days before moving over to combi feeding which I did successfully for six months. I joined groups dedicated to breastfeeding after breast cancer and chatted to people who could relate to my excitement! I was overjoyed! I had beaten the odds twice!