Guest blog: Support through cancer – near, far and virtual
I’m Harriet, aged 48, married to Andy with three children aged 17, 15 and 11. In April 2018 I was diagnosed with ductal invasive oestrogen positive breast cancer.
It’s about six months since I wrote this mammoth blog in a world before lockdown and Covid 19 became part of our everyday vocabulary. I was about a year post treatment and while I was physically ok, it’s fair to say the mental and emotional toll had caught up with me.
The years before my breast cancer diagnosis had been tough. We had relocated twice in the space of three years from Bath to Bournemouth in 2014 then from Bournemouth to Ilkley, West Yorkshire in 2017. My parents and grandma had died in the space of four months in 2015. And my sister had been diagnosed with breast cancer in September 2014 finishing treatment just a week before mum died. It’s fair to say my world had tilted on its axis several times over and I was already emotionally pretty battered, but I was very good at just keeping going.
Diagnosis – a sucker punch
That said, being diagnosed with breast cancer just six months after moving to Ilkley knocked us for six. We were living in rented accommodation with our belongings split between our home in Bournemouth (that we were trying to sell), a storage unit in Skipton and our rental, including stacks of unopened boxes in the garage. The pressure of processing the diagnosis and starting chemotherapy, whilst trying to move into our own home and making sure the children were ok, was immense.
In reality, the load fell to my husband. He looked after us day to day, made sure we had food to eat, that the children got to school and their various after school activities. He also came to the hospital with me, often waiting with me for hours on end whilst fielding work calls and emails, laptop balanced on his lap.
I’ve found a lump
I found the lump in my right breast one morning while having a shower. I’d just spent the weekend in Somerset with my sister and something made me check that morning and it was pretty obvious there was a lump. A quick call to the GP surgery and I was in front of a doctor within the hour. An appointment two weeks later at Airedale Hospital confirmed that the lump was cancer but that two further suspicious areas they’d picked up during the scan and biopsied, were clear. So, just the one lump to deal with.
My surgeon was quick to reassure me that my type of breast cancer was common with a well established and successful treatment plan. I know this was meant to help (and in a sense it did) but at the time, all I could hear was cancer, chemotherapy, surgery and radiotherapy.
I had been catapulted into an alternative universe but it’s amazing how quickly the abnormal becomes the normal with hospital visits and routines becoming the norm.
Breaking the news to family
I’d held off telling my family about anything, just for a short while. I’m normally quick to pick up the phone or text one of my siblings but given everything that had happened, I was wary of adding more worry to their load. Since my parents died my brother had moved from London to Tokyo, one sister left central London behind for the Somerset countryside and my other sister had met and married her husband, also moving into a new home. We’d already been though a lot, but I also knew that they were the ones who, along with Andy’s family, would be able to help us get through. It would just be from a distance.
The world is full of good people – it really is
The Ilkley community we’d been welcomed into just six months earlier swung into action as soon as people discovered I’d been diagnosed. Food parcels landed on our doorstep, along with bunches of flowers, messages of support, and offers of coffees and chats.
I also sent a WhatsApp message to a group of friends a few weeks after diagnosis, once I was ready to go public. I wrote the message and hit send, not really knowing what to expect. Within seconds my phone was pinging and ringing. What followed was a steady and regular stream of messages and calls both with the daft distracting stuff you need sometimes along with the ‘we’re with you and thinking of you’ messages I also needed to hear.
It was all genuinely lovely, but I had no idea really how the next nine months were going to pan out and just had a sense that this overwhelming feeling that it was down to me. Because it was. This was one of those times where you have to show up. No one else can take your place.
During those early weeks I definitely felt buoyed by all the support, but I think I was numb rather than angry or upset. I think I switched pretty quickly into coping mode and with a diary full of hospital appointments I slipped into just getting through each day. It’s not my style to break down in front of people. I tend to just keep going, putting one foot in front of the other.
I managed the physical side effects of chemotherapy reasonably well to start with. My hair fell out 10 days after my first round of chemo, which was awful. It fell out over the course of a couple of days and I’d bought a few headscarves in readiness. I can vaguely remember the first time I went out with a scarf on my head, feeling very self conscious and aware of the reactions of other people as they saw me like this for the first time. The flicker of shock in their facial expressions giving them away momentarily.
The children seemed to get used to my bald head reasonably quickly and at home I was happy to wander around without a scarf. But I didn’t really have the confidence to do that out and about. That would wait until I’d finished chemotherapy, once I’d had enough of choosing which scarf to wear in the morning.
The emotional strain takes its toll
I think I navigated chemotherapy reasonably well, managing the side effects without picking up any infections and staying as active as I could. But I think surgery was my tipping point. I had a pretty horrible experience in hospital with my lumpectomy and having a surgery again just a couple of weeks later definitely knocked me. I was battered and bruised – physically and emotionally. I think there’s a lot of (understandable) focus on chemotherapy may be partly because of the hair loss. It’s also the one treatment that we tend to think of as soon as we hear someone has cancer. But, other treatments like surgery and radiotherapy bring their own challenges. As my surgeon had told me when I was diagnosed, it’s a slog.
So I knew I was unravelling, but I just kept going because I didn’t have any other option. I had to keep turning up to appointments and having the treatment. I just had to keep putting one foot in front of the other and if that meant blocking stuff out or answering concerned questions with a reflexive ‘I’m fine’ or if pushed ‘I’m just a little tired’ then so be it.
Someone who gets it
Cancer is so complicated, just finding the words to describe how I was feeling was nigh on impossible. I wasn’t really able to even say the word cancer. I’d talk about ‘my treatment’ or ‘my diagnosis’. So the chances of being able to express how I was feeling wasn’t particularly high. I guess it isn’t surprising that I started to turn to people who’d had personal experience of cancer for support.
Virtual friendships and support
Much of this support came through people I met online. I wouldn’t have written this blog if it weren’t for meeting Sara from Ticking Off Breast Cancer on Instagram. I wouldn’t have met Barbara from Return to Wellness who I had a fantastically supportive chat with on the phone or found the Mission Remission website.
And I do think this is where our connected world really comes into its own. Being able to read an Instagram post and have a ‘oh yes, me too’ moment when you’re feeling low or isolated was hugely reassuring. I could dip in and out whenever I wanted and didn’t feel I had to commit to attending a group and then feel guilty if I didn’t feel up to it. I did pop along to a couple of local cancer support groups, which were great. But truthfully, social media played a huge part in keeping me going and connected with people who would understand.
Baring your soul
I was really wary of posting too often or too much on Facebook and Instagram where I normally hang out with family and friends. I didn’t know how much or what I wanted to share. It felt exposing and would take a lot of emotional energy, which I just didn’t always have. I didn’t really want to get into the nitty gritty of my treatment, conscious that close family might be reading, and I just didn’t have the headspace. But the waves of love and support I received after the occasional post were amazing. I reread the messages a few times during treatment, and they always gave me a lift and often brought a tear to my eye. Social media was a way for me to keep in touch with the world outside hospital appointments, dipping in and out when I wanted to.
Asking for help – or not
The mental and emotional load on my husband and the children meanwhile was huge and growing. The children were in a new town, at new schools, trying to make new friends and not really knowing who they could turn to for a chat, a hug or a much needed laugh. Andy was juggling everything and getting closer and closer to falling under the weight of carrying it all. I think we all went into our own versions of survival mode, literally getting through each day as best we could. Once we’d hit that point it was hard to lift our heads up and ask for help because, I don’t think we knew what we needed or if we did, didn’t know how to ask for it.
Bottling it up
I know there were times when I would brace myself and think right, the next time someone asks me how I am, I’m going to tell them. And then you meet up or get on the phone and you’re told how well you look or how well you’re doing because people want you to feel good, and the moment is gone. Because where do you begin? It is so nuanced. So complex. So, layered with different emotions. It’s so much easier to say: ‘I’m fine’ and move the conversation on.
Long distance family
Our families visited as often as they could during treatment, travelling from Bristol, Somerset, Wales and even Tokyo (my brother moved there in 2016). These visits were a fantastic boost for us all. There’s nothing quite like a conversation in person with someone who’s known you all your life, as I think we’ve all learned during lockdown.
But there’s no doubt that having that support a little closer would have made a huge difference to us, especially to Andy and the children. So much of the focus is on the person having treatment, it can be incredibly difficult for the family around them. Doubly so when you’re going through it so far away from family and friends.
Tamoxifen, radiotherapy and limping through Christmas 2019
After surgery came the joys of tamoxifen (instant menopause), daily radiotherapy and a change of hospital to the Bexley Wing at St James in Leeds. By this stage I was on autopilot. Get in the car, drive to Leeds, have treatment, come home and repeat twenty times including Christmas Eve, News Year’s eve and a Saturday in between. Twenty blasts overall and by mid January 2019 I was done. Completely done.
How am I now?
Physically I’d say I’m in pretty good shape despite Tamoxifen’s best efforts. But my mental and emotional health has been less robust. I had my first post treatment mammogram on New Year’s Eve 2019. The previous New Year’s Eve was spent having radiotherapy and I’m hoping hospital visits don’t become a New Year’s Eve thing! All of which combined with Christmas, New Year and my end of treatment anniversary, meant I started 2020 with more days of feeling low than I wanted.
I also think that on top of the expected emotional fall out from cancer there were additional layers of emotion – grief at mum and dad not being around and complicated emotions connected with our move up north. We’d lived in Bath for 13 years fully expecting to live there for the long term, but redundancy happened, and we’d seized the opportunity to live by the sea. We were still close enough for family to visit with relative ease, but another redundancy three years later saw us move to Yorkshire. We’d only been in Ilkley six months when I was diagnosed and as much as we love living here, it all happened too soon, and we were a long way from our roots.
Honestly, I limped along in 2019. I started working and focused on building up my physical fitness, but I kept hitting brick walls. I’d kept track of the new Maggie’s Cancer Centre that was being built in Leeds, waiting for it to open. My sister had visited the Maggie’s Cancer Centre in West London so I knew that it would be able to give me the holistic support that I needed.
I signed up for the ‘Where now’ course, for people who have finished cancer treatment. Led by a cancer nurse and clinical psychologist, the small group sessions made a massive difference to my emotional state and were a real turning point. It was the safe and supportive space I needed to be able to talk freely with people who really understood and could help me work my way through the fog and tears.
I finished the ‘Where now’ sessions just as we went into lockdown. I was incredibly thankful that I didn’t need to shield and despite my early anxiety about infection and my immune system, I have tried to make the most of this time at home. Free of the daily routine I’ve been able to just breathe and take stock. I’ve been in regular contact with the team at Maggie’s, joining the weekly relaxation sessions and having 1:1 with the clinical psychologist to help keep me balanced. There are some days where cancer feels like a very long time ago, but I know it doesn’t take that much to pull me back into that world. I’m not sure I’ll ever free of it but I am in a better place now than I was even a few months ago.