hospital appointments

Breast cancer lesson number 48: Short-term pain, long-term gain

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Meet PICC. He’s my new best friend for the next four months (sorry body corset, but you’re history as tummy is pretty much sorted). Otherwise known as a peripherally inserted central catheter, he’s my ticket to the pain-free (and finding-a-vein free) administration of chemo drugs and collection of bloods. He’s not much to look at, but he’s better than a needle (or eight) and that’s all that matters.

There’s nothing like getting 42cm of flexible tubing inserted into your arm to make you feel like a real patient. One more consent form and another plastic wristband down and I was lying on a bed staring at an ultrasound machine, a syringe full of local anaesthetic and a lot of wipes and tubes. The good news? I didn’t have to wear a gown!

It started well. The nurse found a vein with the ultrasound while I was quizzing the nearby student nurse about all the operations she’d observed. (She was quite forthcoming about the details, including the time she watched a surgeon connect blood vessels from a tummy to a chest as part of DIEP surgery. It was fascinating and certainly a strange distraction from the procedure). The local anaesthetic went in well and then the tubing started to enter my arm. I heard the word ‘kink’, then a pause, then a ‘could you bleep the other nurse?’ and a ‘I’m sorry it’s got to come out’. She had done so well and got so far, but when the pressure turned to pain (it’s not supposed to hurt) we both knew it was time to abort. Another vein thrown on the vein scrapheap!

Round two was a complete success. Vein located, anaesthetic in, and 45cm of tubing later and I was off for a chest x-ray. I say 45cm, because the x-ray (an interesting experience in its own right and another x-ray first ticked off the list) highlighted that the tubing was in about 3cm too far. So, I was back to the Cancer Day Unit to get it pulled out a little bit. The tip of the PICC line sits in the big vein just outside the heart, while at the other end, there is about 4cm sticking out of my arm. Don’t worry, for those of you concerned about whether it will come out, the line is held in place by something called a ‘statlock’ and a transparent breathable dressing. Golf and tennis are now on the ‘temporarily banned’ list (along with swimming due to chemo), but I should be able to use it as normal once the initial tenderness has subsided. For those of you who’ve been unlucky enough to see my golf swing, you’ll know this is no great loss. The Olympic Park swimming trip on my Brighter Life list, will just have to wait.

Tucked away neatly under a piece of tubing, it wasn’t until I reached for my cardigan that I stumbled across challenge number one. At the moment, bad arm is right arm, so bad arm goes in to the sleeve first. But what happens when you have two sensitive arms? Let’s just say, it was a pretty good comedy sketch and, after a quick wrestle, I managed the cardie. The coat is a challenge for another day!

One other thing I didn’t consider in this battle against bad veins was that, like all good cannula-like devices, it needs looking after. That means weekly dressing changes and line flushing. More nurses, but thankfully no more needles! That’s a price worth paying. 

Today I have learned a good few things. One, the Cancer Day Unit is lovely (more on that tomorrow). Two, my right arm is now straight enough to pass arm testing for the clinical trial. (It took six attempts and the nurse and I were laughing by the end, but we got there.) Three, PICC line insertion is an interesting procedure (as is a chest x-ray) and really isn’t that uncomfortable if you’re considering getting one. Four, details of the acute oncology assessment unit must now travel with me everywhere. And, five, my blog URL is (amusingly) blocked by the hospital WIFI (probably deemed as dubious, but given the amount of boobs currently on show in most hospitals, I find it so funny. Mine just includes the word). The hospital does do a good egg sandwich though, so I’ll let them off.

I’ve seen the unit. I’ve seen the chemo chair (looks quite comfy). I’ve seen the suite and I’ve got the line. There’s only one thing missing. Those cell-destroying drugs. Just two sleeps left.

First, I have to work out how to have a shower without getting the PICC wet and then I need to look at just how many more clothes are now off limits due to my new arm accessory. Just when I thought I was getting my wardrobe back.

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.