Cancer With a Toddler – Holly’s Story

Let me introduce you to Holly. She’s been on the blog before, putting us up one Christmas in Germany and hanging out with us in London but this post is a little different. It’s National Breast Cancer Awareness Month and in honour of that, I’ve invited Holly to share her story with you all. It’s searingly honest and I feel privileged to be hosting it. I’ll let her begin in just a second but first, a little about the person Holly, as opposed to the cancer patient Holly. Because, naturally, she is much more than her diagnosis.

I’ve known Holly for a long time. I met Nathan 18 years and 4 days ago and it wasn’t long after we met that he introduced me to her. We became part of the HollyNicky gang that is still knocking about today, albeit a little greyer than we used to be and with a few add-ons. There were wild parties, which gradually became less wild and now we all have kids they’re pretty wild again but in a different kind of way. I asked Facebook what our friendship with Holly looked like and it came up with this answer:

Now, only a handful of these thumbnails actually feature me and Holly, but fbook assures me we’re both in there if you zoom out. One of them is definitely just Reuben but I think Holly’s back might be  in it too if you look carefully. So that’s Holly – teacher, mother, army wife, Brown Owl, Janet Impersonator and most recently cancer patient.

The last one of those took me by surprise one evening last November. Nathan was out at an engagement party, I was painting the lounge and watching Children in Need. My phone buzzed with The Message, I read it and felt sick. I didn’t know what to think at all. A mouse scuttered past and I only half acknowledged it – I just stood, roller in hand, and felt like the world as we knew it was changing. If that’s how it felt for me, how could it possibly have felt for her? Well, read on as I finally hand over to the woman herself to tell us what happened then and what happened next.  

LWAT: Thanks for sharing your story with us.  You’ve had a bit of a rollercoaster year – tell us,  briefly, what’s happened.

Holly: Thank you for letting me share. The main reason I want to tell a bit of my story is to help anyone else out there who maybe is about to start theirs and to remind everyone of the importance of checking themselves, so they know what normal feels like and persevering when they know something isn’t right with their bodies. 

My story started in July when I found a lump in my right breast. However it took several visits to the local Breast Clinic before I was diagnosed with a Grade 3 invasive Breast Cancer on November 14th 2014. The tumour was approximately 8-10cm to the touch and on ultrasound 5cm.

Since then I have undergone 6 rounds of Chemotherapy, a Mastectomy with implant reconstruction, 30 sessions of Radiotherapy and am now on daily medication to reduce the risk of the cancer returning. The medication only works post-menopause so at 36 I have my ovaries shut down through an injection every 3 months.

So, give us an idea of what your life was like before the diagnosis. You were quite low risk for breast cancer, weren’t you?

Yes – before I was diagnosed it had never really occurred to me that I was at risk. I checked myself occasionally but not regularly. I suppose I was more aware of the changes in my breasts as I was feeding my nearly 1yr old son at the time, and had been feeding for the previous 3yrs as I had breastfed my eldest son too. Strangely, I have a dark raised scab like patch of skin on my left breast that I have always kept an eye on – if it was going to be anywhere I had always thought it would be there.

So when the doctors reassured my the increasing in size and pain lump I was experiencing was likely linked to breastfeeding I really didn’t think anything of it. In fact, if I am being honest,  I wouldn’t have kept returning to the clinic if it wasn’t getting so excruciatingly painful to touch. I would have trusted the professionals who told me it was likely to go away when I finished feeding. I know it sounds dramatic but that pain most likely saved my life.

Describe those first few days after you were diagnosed. Did you feel like you’d been hit by a train?

I really did. I have described the realisation of the significance of that phone call to many people as like a Japanese Bullet Train through my kitchen. If I had been holding a wine glass or anything else breakable it would have been a perfect Hollywood slow-motion-smash-to-the-floor moment. I was dishing up dinner at the time so thank goodness I had put down whatever dish I was carrying when the phone rang. Obviously they don’t actually tell you on the phone and we weren’t waiting for worrying results. So, I was blissfully ignorant until the nurse suggested I really should bring my husband with me to the appointment the next day. It was the day before my eldest 3rd Birthday and we had a massive joint party organised for the Sunday so life carried on as close to normal as we could muster, and so begun life with Breast Cancer as a mother to 2 small boys.

How did your life change as you underwent treatment, especially looking after two children at the same time?

Life has changed in so many ways it is difficult to pinpoint exactly and even harder to explain really.  I have had to come to terms with a number of changes in my body physically and my way of thinking. I have made choices that have, at times, had to be selfish and therefore put more expectation on others to do jobs I think I should be doing, which causes immense guilt.

The main example is making the decision to let other people look after your children because the side-effects stop you feeling safe or able to do so. I have had to accept that it’s my husband’s turn to look after all of us and that it is OK to ask for help. This means that I miss out on adventures as he takes them to the beach, or to a museum so that I can rest. We chose for our youngest to start nursery earlier than he would have done, and to increase his hours as I got more exhausted.

As a result of the surgery I am physically weaker on my right side – for the 6 weeks after surgery I couldn’t lift or carry either of my children without risk of damaging the healing process. I am also more fragile – I live with fear of lymphedema (basically a build up of excess lymphatic fluid in my arm) due to the fact I had 3 lymph nodes removed during my surgery. This means I am more fearful of playing with my children. I’m wary of taking them to the park in case one falls from a piece of equipment and in catching them I injure myself.  The drug that is hopefully keeping the cancer from returning gives menearly daily headaches,  which doesn’t help with my patience. As a result, the children suffer again as I struggle to cope with the noise and chaos of a house with 2 toddlers in it.

There have also been some specific changes I’ve had to make – the first major one being weaning both my children. We had 2 weeks between diagnosis and my Chemotherapy starting. Two weeks to wean a 12month old who was feeding approximately 4 times a day. Whilst still in shock at the news,  I had to find the gentlest way to end my 3 year-long breastfeeding journey.

My eldest was only feeding occasionally but at nearly 3 he was aware that something was going on, so we had to explain the why Mummy had stopped making milk. Thankfully we where given a fantastic book called ‘Mummy’s Lump’ which has been so helpful for all stages of my treatment. I was reassured by many people how well I had done, the benefits the boys had had etc; and those came from a place of love – it was the first in a line of times when you realise our language is just not up to the job and instead you have to take strength from the intention. Somebody cares about you enough to try and make you feel better.

Then there were the effects of the chemo – losing the hair on my head, legs, underarms, pubis, eyebrows, eyelashes and face and the crazy unpredictable journey that my appetite and taste buds went on . The steroids that ensured my body was strong enough for the Chemotherapy also meant that things I used to love became bland, tasteless and even caused nausea. I remember a dinner at my husband’s work a week after one round where every mouthful of the meal was like eating nails made of sawdust!

However I also ate and ate and ate, resulting in +1.5st weight gain. You start to not recognise yourself on the outside, you start to not love yourself on the outside and to think that those who do find you attractive couldn’t possibly. This puts a further pressure on your relationships and personal life. Not only was I no longer fulfilling the role of a mother I expected of myself but also the role of a wife.

What was the hardest point of your journey?

That’s really hard to say so I’ll split it up. Physically the hardest part was probably recovering from surgery. I was very lucky that I didn’t experience any issues – no infections etc –  that the drains I had to carry around for the first week came out cleanly and the sites healed well. I am proud of my body for healing so well, however it has definitely taken longer than the initial 6wks.

I remember the first time I tried to take a bath, which was going to be more a sponge bath as I couldn’t actually get the scar wet. It was so painful trying to lower myself in and as for getting out –  well, there was no way any weight was going through my right arm. I was so scared of slipping & falling – needless to say I didn’t get into the bath again for some time.

Mentally I think Chemotherapy was the hardest, I had 6 rounds and you know that the week following is going to bring any number and manner of side effects. You have to be mentally prepared for whatever reaction your body is going to through at you; nausea to vomiting; diarrhoea to intense insane constipation; neutropenia, to name just a few. I think this is why I choose to shave my head. I wanted to take control – to know exactly when it was going to happen and not to watch it in clumps on my pillow. I also wanted the children to see it happen on my terms, not to worry or be scared.

Emotionally the Radiotherapy. This is the bolts and braces (technically I didn’t have cancer by then as the surgery had removed the remaining 5% that Chemotherapy hadn’t eradicated). However for 30 days, I had to drive to the hospital and be irradiated. My skin (again thankfully only mildly) was burnt, my breast swollen, and every day I was reminded not only how far I had come and what my body had been put through, but also how far I still have to go. It was a stark reminder that I wasn’t going to walk out the door on August 7th and be able to forget this ever happened. 

What was actually helpful to you?  No one ever knows what to say to cancer patients…what kind of things  did people say that were supportive and what wasn’t?

Again, what has been the most helpful has varied throughout the different stages of my treatment. I have tried very hard to keep life as normal as possible, but to do this I have needed friends to carry on as normal too. To invite me to coffee, to message me with their problems, to forgive me when I forget to do something I promised.

This hasn’t always happened, and this is not their fault but no-one knows exactly what to say and people are scared. When it has happened I have been so humbled by the support people have shown the faith people have in my strength and this has helped me to get up many many mornings. Other people have believed in me even when I didn’t. For me, it meant so much when people told me how well I looked – if I could look strong on the outside, then I was beating the turmoil on the inside. Practical help with childcare logistics, home-cooked meals and trips to the pharmacy have been invaluable. Gifts in the post that say “I wish I could be there but I am thinking of you” have brought a smile to my face.

I am not sure I could pin point anything that wasn’t supportive – it is hard when people try to sympathise with you and compare their pain, tiredness, stress etc to yours. That is not because I think mine is worse, but it wasn’t entirely helpful to either of us.. It was hope, distraction, purpose and empathy that were helpful to me.

How are you feeling now?  What does the future hold in terms of treatment/prevention?

Now I am feeling very numb, in limbo I suppose. I finished active treatment in August and medically, it’s kind of like I fell off the conveyor belt. You want so hard to return to normal – as you get closer to that final treatment date, you get more and more excited about it all being over. However you can’t just wake up the next day, brush yourself off and click your fingers. There are still side effects, my body is still recoveringand it is still getting used to the changes forced upon it.

I have to take a medication called Anastrozole daily,  which lowers the amount of oestrogen in my body, therefore reducing the risk that the cancer will return. In order for this drug to work, I have an injection of a drug called Zoladex every 3 months to shut down my ovaries and  induce the menopause. I will be on this course of treatment for at least 5 years. This has led me to consider an oophorectomy (have my ovaries removed) in order to take away the need for the Zoladex .

I am also facing a future where I am going to be double guessing every little change. At the moment I am not fearful the Cancer will return (I am very much in the “what will be will be” frame of mind). I just have had enough of doctor’s appointments, of hospital visits, of arranging childcare, of the disruption that this has all brought – I am very frustrated by the impact on our lives and so am very short tempered when anything goes wrong!

How have you dealt with running a business through this whole thing?

Please support Holly and the Whip Cancer campaign here!