I’m fairly open about what’s going on in our little world most of the time. But sometimes things happen behind the scenes that I choose to keep private for a while before I feel ready to share them. Things that are deeply personal, things that tap into old fears and stories, things that need a bit more time to process.
I think vulnerability and honesty are incredibly important. I also think that putting family first is vital. I do my best to follow both of those values consistently. In some situations though it comes down to a choice and one of those values has to be prioritised above the other rather than them happening at the same time, if that makes sense?
2019 has been wonderful in many, many ways and we’ve had a lot of fun and made some brilliant memories. It’s also had it’s tough parts that we’ve had to navigate together as a family too. A health issue for Lola has been one of those trickier times and it’s needed me to put family first, which is why I’ve stayed quite quiet about it until now. After getting some closure on a couple of other things that have been going on in recent months, I finally feel like I have the headspace to write about it.
Back in the summer, sometime in June (I think), I noticed a little spot on Lola’s upper arm, right on the smooth skin of her bicep. “That’s odd”, I thought. “Perhaps it’s an ingrowing hair or an insect bite of some kind”. I put it to the back of my mind and we carried on doing what we do best in the summertime – enjoying the sunshine, going for walks, visiting our favourite places, exploring new ones and making memories.
As the weeks went by, the little spot got bigger, then grew some more, and gradually it turned into a small lump. By the time the start of August rolled around it was large enough to be visibly noticeable from a distance. Towards the end of August and seemingly overnight it became surrounded by a wide patch of angry-looking red skin that felt hot to the touch.
Unable to get an appointment with our family doctor, I took her to the out-of-hours doctor at the weekend, who was based at a different clinic. She had a good look and then prescribed antibiotics to get rid of what she thought was an infection. Lola started September (and the first term of a new school year) dosed up on strong medication.
After five days the redness had gradually reduced and the infection disappeared. But the hard, pea-sized, now whitish-blue coloured lump remained. If anything, it was bigger than it had been before.
Worried, I took her back to the doctor (managing to get a same-day appointment this time) and we saw our family GP at the surgery we’re familiar with. She decided that she was concerned enough to refer Lola for an ultrasound scan of the lump to try and work out what it is.
We received an appointment for the start of October. This ended up being cancelled by the hospital as the consultant was no longer available and was rearranged for the following week. By this point I was very much hoping that the medical professionals were just being cautious, but there was a definite seed of worry growing in the pit of my belly.
Lola was both excited and a little sad to miss an afternoon of school to go for her scan and I’m thankful that that’s all she was worried about. I had a knot in my stomach the whole time we were there (but then I hate hospitals anyway so that definitely didn’t help!).
The sonographer was nice enough and chatted with Lola as she did the scan, measuring the lump, mapping out it’s edges, exactly like a pregnancy ultrasound. After a time, the small-talk stopped and I watched the sonographer frowning at the screen in concentration. It occurred to me that she was taking quite a long time over this. We’d been told it was a 10-15 minute appointment, but we were there for well over half an hour.
Finally, she was done. I asked for an indication as to what she thought the lump might be, simply wanting to know whether it was something I should be worried about or not. The sonographer refused to answer, repeatedly saying that I would need to get the results from our GP in ten days time. Thinking she was just following protocol, I accepted her words, resigning myself to having to wait for ten days for an answer. Lola and I left the hospital, turning the music up loud in the car on the way home and singing along to our favourite songs together as we battled the traffic to get home in time to pick her sisters up from school.
First thing the following morning I received a message from our GP surgery, asking me to make an appointment to bring Lola in to discuss the results of the ultrasound scan. Slightly alarmed at the speed the results had been returned, I called to book an appointment, but such is the system at our surgery that they couldn’t get us in to be seen for ten days.
I fretted constantly and continuously for those ten days, alternating between convincing myself that it was something awful to being one hundred percent sure that it was nothing – after all, if it was important they would have fitted us in sooner, right?
When we arrived for our Friday afternoon appointment the doctor had no clue why we were there. She read through the results on her screen, then admitted that she needed to look up the diagnosis as she didn’t know what it was. This didn’t exactly fill me with confidence and I could feel my heartbeat speed up insistently. The GP quickly consulted Google on her phone (yes, really!), looked up at me with concern in her eyes and told Lola to go and wait outside the room.
I was not happy with this as the waiting room is down a corridor, round a corner and completely out of my sight, but I was so taken aback by the unexpected instruction that I complied and sent my daughter away. I fully regret this decision now and wish I’d insisted that she stayed with me – the fearful and bewildered expression on her face (which, to be honest, probably matched my own) will stay with me for a very long time.
Lola looked both confused and nervous as she walked away by herself. My usually confident little nine year old suddenly seeming to be paradoxically tiny and grown up all at once as she went to sit in the waiting room by herself, clutching her ‘Dork Diaries’ book to her chest tightly, her ponytail cascading down her slightly built shoulders.
The room span and I fought to control my breathing and stay calm as I turned back to face the doctor.
I don’t remember a huge amount of what was said next. It was mostly just words and snippets of sentences that have stayed with me. The doctor explained that the diagnosis of the lump is a pilomatrixoma (sometimes spelt pilomatricoma with a ‘c’ instead of an ‘x’). A tumour. Currently benign but with a small potential to turn malignant. Urgent referral to have it removed “just to be on the safe side”, especially as it had grown some more since she had first referred us for the scan. We’d receive an appointment letter through the post within two weeks. I made her write the word down for me.
I left the room, clutching the little piece of paper with the diagnosis scribbled on it, feeling like I was floating. My brain was working overtime, desperately trying to process what I’d just heard and find some frame of reference for it, whilst my emotions switched off and I felt completely numb. A tumour? Surely that can’t be right? Even a non-cancerous tumour is still a tumour.
I found Lola sitting quietly on a chair by herself in the corner of the waiting room. She looked up when she felt me approaching and gave me a small smile and my heart broke a little at her complete and utter innocence of it all.
I did my best to explain everything to her in as simple terms as I could, emphasising that she is ok, that it’s all going to be fine, that she just needs to have the lump taken off of her arm and then it’ll all be over and done with.
Just four days later the hospital called with an appointment scheduled for two days time, less than a week after we got the diagnosis. Those six days were horrendous. The word kept rolling around in my brain and I couldn’t get the thoughts of it out of my head. I imagined and feared and dreamed the worst, going over and over and over all the possible outcomes, good and bad.
I researched the diagnosis extensively of course. All the while reassuring Lola that everything was going to be fine and that it’s nothing to worry about. I discovered that the chances of it becoming malignant are exceedingly rare, that it’s actually a tumour of the hair follicle and that surgery to remove it is the usual course of treatment if it’s causing discomfort or distress.
The hospital appointment was with a consultant dermatologist. He only had a brief look at the lump but he did spend about 20 minutes talking through our options. In the end we decided on a referral to the plastic surgery team to discuss having it removed, though he explained that it wouldn’t be an urgent referral as it’s benign, so we could have quite a while to wait.
He explained the surgical procedure: a slit in her arm which they would open up in order to remove the lump as a whole solid ‘ball’. It would be tested and a biopsy done to confirm that it is definitely benign. It’s likely to leave her with a fairly significant scar, especially as the lump is continuing to get bigger and we don’t know yet when the surgery will take place – it could be months from now. From what I understand it’s important to remove it in it’s entirety so that it reduces the risk of recurrence. In order to do that they have to cut quite wide and deep margins around the tumour.
Thankfully Lola currently seems to be remaining remarkably unfazed by the whole thing. She has asked some questions of course, such as “Will it hurt?” and “Will I be asleep or awake when they do it?”. I don’t have those answers yet and she appears to accept that. My best friend’s husband is an anaesthetist so I’m fairly sure that I’ll be asking him lots of questions as we get closer to the date of the operation.
I don’t know what she will be like when we get a date for the surgery and the reality of being in hospital and having an operation hits her. I’m hoping she’ll be resilient and calm about it and I guess if I model that for her, she’ll find the whole process much easier.
I’ve tried to put all thoughts of it out of my mind for the time being, until we get a date through for the consultation and then the surgery itself. Worrying about it won’t achieve anything. I’m keeping a close eye on the lump though and it is definitely still growing, so really the sooner the appointment comes through, the better.
We were in hospital a couple of times with Ella when she was a tiny baby – once when she choked due to her reflux (her Dad saved her life) and once when she contracted a particularly horrendous tummy bug at about 9 months old and because she already wasn’t thriving it hit her really hard and we had to stay overnight so that she could be monitored.
I’ve also spent hours and hours in A&E with Mimi for various injuries – a haematoma on the back of her head when she fell and hit it on the corner of a radiator, plus numerous suspected broken fingers and toes and elbows. Thankfully, nothing has ever been awfully serious.
I’m hoping that trend continues and that Lola will just be a simple day surgery, the excision will be successful and that will be the end of it.
It’s been helpful to write down the sequence of events, to put it in some kind of order, to make sense of it all. I’ll write more when we have an update but for now I’m going to leave it there.
If anyone has any experience of their children having had minor surgery that you would be willing to share, please do leave a comment below as I’d love to hear your story, how you coped, what tips you have for time in hospital, what it’s like seeing your child have an anaesthetic and anything else that could be useful to know.
Thank you so much in advance for any suggestions and thank you also for reading this far.