Breast cancer lesson number 47: The importance of being normal

For those of you currently splitting your days between the waiting room and the living room, I am delighted to report that there is life beyond these walls. I have seen it. I know it’s hard to imagine. But, it’s still there, being interesting, just like you left it.

The truth is, daily walks, daily planned-in box set viewing and almost-daily hospital visits – although vital for post-surgery recovery ­–­ do not a life make. In recent weeks, I have felt more like an observer on my own life, rather than a participant in it. If health allows, however, and you are brave enough to open the door to the other side of you (the pre-cancer normal), I would encourage you to do so – right now.

By normal, I don’t mean dull. By normal, I mean the bits of life you enjoyed before cancer swept in and took them away. Yes, be selective (you may wish to live without the ritual of Friday night pizza). Yes, make adjustments (I am seeing more friends and having more laughs than ever before). But make normal your base and, you’ll find it’s the hospital appointments that start getting in the way – not the other way round.

Since the day I was diagnosed I have made a conscious effort to not be a cancer patient (she says writing a blog on the subject!). I don’t want to hide away with only my thoughts for company. I don’t want to be defined by the clinic and chemo dates in the diary, because I know that when the dates stop coming, life can go from being very busy to very lonely overnight. I want to use the time cancer has inadvertently gifted me to cherry pick the bits of life I love and shut the door on everything else. There’s a lot of truth in the phrase, ‘you are what you do’. Give yourself over to cancer and you’ll forget the life you’re fighting for.

The great thing about rediscovering your ‘normal’ is that something you’ve taken for granted for years suddenly becomes more exciting and beautiful. Take Thursday night. I had a theatre date in the diary and I was determined to keep it. It’s probably worth mentioning at this point that my taste in theatre is acquired. While I do love my musicals, a bit of Shakespeare and the odd sedate play, I also like to explore the world of immersive and promenade theatre. Those of you who know me well will know I’ve been kidnapped by vampires in Barbican car park, sent on a mission underneath Waterloo station and electrocuted (mildly) in the name of art. If it’s rather strange and often devoid of a coherent plotline, I’m there.

While I was making my way to Shoreditch Town Hall basement to watch Philip Pullman’s Grimm Tales, I was trying to remember why it was I’d booked it in the first place. As I approached the theatre it hit me – or should I say the wording on the poster did. It was immersive. That meant involvement. Instead of my usual nervous excitement, I suddenly felt completely vulnerable. I didn’t look even remotely ill, so how would I be able to keep my arm, boob and tummy protected when surrounded by focused actors and curious theatre-goers. I didn’t feel ready.

The great news is, that rather running for the exit – or back stage to find someone who could furnish me with a big ‘don’t touch me’ sticker – I grabbed a glass of wine and had a wonderful evening with a friend. While I would have loved to have found a seat in each of the rooms and, while I slept well that night, I found being at an event where only one other person knew what was going on beneath my clothes really exhilarating. Cancer wasn’t centre stage and, you know what, I loved it.

Of course, there is a small note of caution. It is worth remembering, you’re still not normal, even though you’re playing the part. I was reminded of this on Friday night when having a takeaway with friends at home. I ate my usual healthy (or not so) Jackie-sized portions (at my usual fast Jackie pace) and enjoyed some of our engagement Champagne and wine. It was only later that I realised the body corset/curry combo was not a particularly good one. I didn’t enough have space for water and was still reliving the experience 24 hours later. A few less mouthfuls and a lot less speed, and I would have been fine.

People talk about discovering their ‘new normal’ after finishing active treatment. I have around six months to go and think it is important I use this time to go back to my version of normal so that I can work out what I want my ‘new normal’ to be. I know it will include a hair cut every eight weeks (once there is something to style. I am already craving the smell of product knowing I won’t be there as a client for a while). I know it will include immersive theatre. But I know it will be different. It has to be. There are already 40 things on my Brighter Life list for starters and I am determined to complete each and every one.

I know it will be busy, but I know it will be better. And, there won’t be a single cannula, oxygen mask or blood pressure cuff in sight.

 

Breast cancer lesson number 35: It’s ok to not be ok

I have a confession. Last night, I cried while trying to inject myself with my Menopur drugs. I sat looking at the needle that I was about to inject into an already sore and bruised thigh and I cried and I cried and I cried.

I cried not because it was yet another needle (although 13 needles in two days, is not fun). I cried not because the fertility department hadn’t called me back to advise me on dosage so I didn’t know what to inject (although that was a little concerning, because I don’t want to be hyper stimulated!). No, I cried because I was weary and the thought of seeing more blood and being the one to inflict yet another bruise made me sad.

My body is fighting the pains that come from having my tummy turned into a boob and my lymph nodes removed. My body is fighting every time it gets confronted with a needle. My body has a cocktail of anti-cancer drugs and fertility hormones swirling around inside it. My body needs a day off from fighting. The trouble is, that day is about six months away.

I promised myself when I started this blog that I would be honest and true to myself throughout. I have, up to now, been incredibly positive. I have smiled in the face of cancer. I have been diligent in my research and have made all the right noises. I wanted to be a great and patient patient. And, you know what? I will do and be all of those things again and again.

But, right now, as I sit on the sofa I am not being brave or strong or inspirational. Today, I’m just being me. And that’s ok. Today, I am hurting. And, the fact is, that’s ok too. I am writing this post, not because I want people to feel sad for me, but because I want to reach out to those experiencing challenging times and say, it’s ok to not be ok. You’re not made up of a series of powerfully positive personality traits. You just have to be what your body allows you to be when you wake up each day. And, listening to your body and admitting that it’s ok to not always be a pillar of strength is probably the greatest lesson you’ll ever learn. It’s hard, but it’s also quite liberating.

Ask me how I’m feeling right now and I’ll tell you. I feel like I have already run a marathon but am back at the starting line (complete with injuries from the first one) waiting to go again. I want to stop, rest and heal but I can’t, because I’m running for my life. I also want to give Duncan and I the chance to be parents. That’s a big thing. Cram it in between major surgery and chemo and it’s still a big thing. It’s just that there are two other really big things either side fighting for attention.

Yesterday, my lovely oncologist turned to me and said that he was behind me 110% and would be there to support me through this next phase. He also said that there will come a time when I will desperately want it to stop. When that time comes he said he will remind me of the need to keep going. This was a pep talk unlike any other pep talk I have ever received. For surgery, they told me it would hurt, but if I did my exercises, I would recover. It did, I am and I will. For fertility, they told me to inject, inject, inject and then they will eventually inject me for once and take my eggs. I am and they will. The experts are usually spot on. Based on yesterday’s conversation, I should be preparing for the fight of my life. I need to be ready. But, when you’re covered in bruises and you’re just piling on the pain, it’s hard to get ready.

Yesterday, instead of trying to take the title of world’s best patient (I seem to have a burning desire to be a textbook student in every consultation because I think people often forget that doctors and nurses are humans too with real lives away from the ones they’re trying to save), I should have just accepted the support available and explained how scared I am. The truth is, there is no such thing as the world’s best patient (and if there is, don’t tell me because I don’t want to be tempted to apply). No patient is good or bad. Everyone is different and, while it’s nice to be the nice one in the waiting room, I am just another name on a long list of cancer patients. Nice people don’t queue jump or get better drugs (just extra biscuits if they’re lucky). I will continue being nice, but I know that far better than seeing me, would be to never see me at all!

As a quick aside, it’s not all bad being one of the youngest people in the waiting room. While I was waiting for my appointment, a lovely old chap chose to sit next to me because he’d picked me out as ‘the good looking one’. Trust me, there wasn’t much competition, but it still felt good. Not sure he’ll be rushing to my side when I have no eyebrows though!

There will be a time to be strong. But, for now, I’m just going to sit on the sofa, drink tea and work up the courage to take my next injection. Wish me luck.