Guest blog: Life of a Breast Cancer Worrier
I have written this in the hope that it will help anyone going through a breast cancer diagnosis and treatment. From the day you are diagnosed to the time when the treatment ends, and you begin to re-build your life.
I love a metaphor and I have been thinking of the best way to describe what I have been through. So, I ask you to think of an earthquake: an unexpected disaster that rips your world apart causing far-reaching devastation, then just as you are starting to get up again, there comes an aftershock sending ripples of fear and uncertainty once again.
This time last year the earthquake had hit. I had been given my diagnosis. My husband and I had the devastating job of telling our two girls and my family were preparing for the next few months of uncertainty as I waited for my treatment to start.
I can’t come up with a metaphor to explain the sadness I felt but I can remember how tangible and overwhelming it was. My life as I knew it had completely changed. Within a matter of weeks, I had gone from juggling a job that I loved and being mum to two beautiful girls, to juggling hospital appointments and trying to keep life as ‘normal’ as possible for my family.
One of the hardest things in this initial stage was getting my head around the fact that there would be times over the next year that I wouldn’t be able to look after my children. It didn’t feel right. Not only was I going to have to stop work but my ultimate job of being a mum was going to be disrupted in the most unwelcome way.
No amount of information or advice can prepare you for the grueling marathon that is chemotherapy. If you are reading this about to embark on treatment and are terrified as I was, acknowledge the fear, ask as many questions as you need to and remember that this is just a period of time in your life – you will get through it.
The fear that I have experienced over the last year has at times been overwhelming. From the moment I found the change in my breast onwards. The fear about what they would find and whether it had spread? Was I going to die? How would my husband and girls cope? The consultant meetings and treatment plan. How would I cope with losing my hair? How poorly was chemotherapy going to make me? Surgery. Would I need a mastectomy? Would I wake up from the general anaesthetic? What was going to happen next?
I have come to learn that fear is an emotion that can be conquered. For me, acknowledging the fear and talking about the very worst-case scenario really helped. My husband, my best friend and fellow worrier listened patiently as I battled with my thoughts. We knew we weren’t going to come up with a solution but there were no elephants in the room – we both knew how we were feeling. A support network is going to be your biggest help – surround yourself with people you can be honest with. Don’t apologise for how you feel. People will want to help in any way they can.
I am confident that if you were to ask my friends and family, they would say I have done a good job of continuing to ‘live’ through all of my treatments – to make the most of any opportunities and to approach things with a positive mindset. Fill your ‘well’ time with things that you love, make sure you always have something to look forward to when the days seem long and dark.
After the initial devastation, when you are beginning to re-build your life, be prepared for the aftershocks. The nature of aftershocks is that they can continue over a period of weeks, months, or years. I wasn’t prepared for these and they can have just as much impact as the initial shock. I have written about the aftershocks I continue to experience a year on, in the hope that it might be able to prepare someone else for the possible aftereffects. I am very mindful that everybody copes differently but hope this will help someone somewhere.
- Mental health
For me, one of the biggest aftershocks was the impact my diagnosis and treatment has had on my mental health and emotional well-being. I have to add in here that the effects of the hormone treatment can’t be ignored. I didn’t realise that my body no longer producing oestrogen would have such an impact and I know this hasn’t helped with my mental health and recovery. I have read so many articles about this stage, post treatment and how it is one of the hardest times but I really thought that because I had managed so well through my treatment that I would just continue to do this and when I couldn’t, it hurt.
My body and mind have worked so hard over the last year, processing information, managing new drugs, surgery, radiotherapy and a medically induced menopause. I think I expected too much of myself too soon. I am my own worst enemy at times and put unrealistic expectations on myself and when I couldn’t achieve these, I felt a failure.
The thing with mental health is that someone can look ok on the outside but be fighting the biggest battle. I look fine, I am sporting a new short hair style which people compliment me on, they tell me how well I look – but looks can be deceiving.
I am slowly adjusting to the new me – I am beginning to accept that I am not who I was but with this comes sadness, anger, anxiety and frustration. With help I am learning to acknowledge these feelings. Acknowledge them and find some strategies to ease them.
My biggest advice to myself and to anyone else struggling is be kind to yourself and accept help. The Force cancer centre in Exeter has been such a support and I continue to use their services as part of my recovery. Do what you love. For me it is walking, reading, baking, watching my favourite box set, planning events to look forward to and spending time with my family and friends. But what works one day might not work the next. I continue to ride the storm, knowing that better days will follow and that ultimately, I am alive.
- The impact on others
At regular times throughout my diagnosis and treatment I felt guilty about how my closest family and friends were feeling and how they were coping. I knew it wasn’t anything I could control but it didn’t stop me.
As a mum it goes without saying that you want to protect your children from anything that is going to hurt and upset them. I knew they had to know, and it was just a decision about how and when to tell them. My husband and I wanted to wait until we had as much information as possible. I looked at all the information in the leaflets and books and decided I wanted to use the structure of a book I saw but write my own to explain the different stages of treatment I was going to have. Every time I think back to this moment it hurts so much, the disbelief on their faces and the reaction from my oldest daughter is still so clear in my mind. My youngest daughter, who was 5 at the time didn’t react straight away, she looked at the rest of us in tears, but I don’t think she was able to process it at the time.
Around 6 months after my diagnosis, my youngest daughter began to behave differently, she became very anxious, upset and angry. She developed a phobia about becoming ill and it was a challenge to get her into school. She was carrying so many worries and it was so upsetting to see. I was still going through treatment and feeling tired and anxious myself which didn’t help.
I was able to get her some support through FORCE cancer charity which is local to us. We met with one of the counsellors there and he talked to us both about her fears and behaviours, she was able to do this through play and paint and I was able to begin to understand the impact my illness had on her and how I could help.
I had to dig so deep during this time and find reserves of energy and patience and sometimes I wasn’t always able to. Be kind to yourself, as a mum we put so much pressure on ourselves. It’s ok to not be ok all the time.
- Return to work
For me life before cancer was all about juggling work and family life. I am a SENCO in a primary school and thrive on problem solving, supporting my colleagues, families and most of all the children in my care.
I made the decision to continue working as much as I could throughout my chemotherapy and leading up to surgery. This helped to give me some control in a situation where I had none. This was the right decision for me and helped both me and my colleagues. I was able to complete paperwork from home, organise meetings and even attended some.
I took the decision in consultation with my work to get signed off whilst I had radiotherapy as I would be going into hospital on a daily basis.
When treatment finished, I expected to be able to go back within weeks. I had the mindset that I had managed it through the treatment so why not shortly afterwards? I had arranged a return to work date and as this loomed, I became more and more anxious. I was so tired following radiotherapy and I was feeling low and not at all like myself. How was I going to cope with the demands of my job when I was feeling like this?
I felt like I needed permission to take a bit longer but I have since worked out that I needed to give myself this permission. My counsellor, doctor, oncologist and work were all very supportive but I needed to accept that I wasn’t ready and needed more time.
My advice in this situation is to not set yourself any time limit. When I set dates and couldn’t achieve them, this added to my sense of failure and further impacted on my mental health. Take as much time as you can, you will know when the time is right to return. All the signs were there for me, but I didn’t read them.
If you are lucky enough to have a supportive workplace then be honest with them and keep them informed. I was referred to occupational health and this was helpful for all involved.
Also, discuss how you are feeling with your doctor. I am lucky to have a very supportive doctor who took the decision out of my hands and signed me off for longer than I would have taken.
- Fear of recurrence
We are all aware of our own mortality, but a cancer diagnosis brings this hurtling to the forefront, it’s there everywhere you turn. In time, you learn to live with it, but it still hurts. People ask about my prognosis and if I’m in remission. I discussed this with my oncologist, and he couldn’t really give me an answer. I don’t fit the typical models that the data is based on. So, it might come back, or it might not. Part of me is desperate to know and part of me runs screaming from that conversation.
Fear of recurrence is the biggest aftershock for me. When you are having treatment there is a safety net around you. You go from regular treatment and consultations to three-monthly check-ins. For some this is welcome and for others those new aches and pains you are having become much bigger than they previously would have.
Every time I feel poorly or discover an unusual ache or pain I begin to question. What if? It is terrifying but I am learning to deal with this. If you are ever unsure talk to your doctor, oncology team or breast care nurse.
I have discovered that recovery isn’t a linear path. I am learning to be kinder to myself. My body and mind have been through trauma and they need to heal. I am still processing all the information I have been given, negotiating new treatment, recovering from the invasive procedures I have had and learning to trust my body again.
Above it all I am still me, just a different version and I am determined to live my life to the full. Ready to continue being a breast cancer worrier.
Vicky, aged 38, is a mum of two, wife, daughter, sister and friend. She was diagnosed with oestrogen positive primary breast cancer in May 2018. Her treatment consisted of neo-adjuvant FEC-T chemotherapy (switched to Paclitaxel) wide local excision and axillary clearance with further margin excision and radiotherapy. She is receiving ongoing bisphosphonates treatment.