I arrived down on the ward to welcome peace and solitude. I had a nurse tending to me 24-7 but on a much less hectic level. I left a few of my pipes up in ICU too so I felt a little less like a Christmas tree.
Finally, I am also allowed visitors other than Dad and James, not that they weren’t enough, but the friendly faces I would see in the following week would really help me along on my way towards positive thinking…..and give Dad a chance to duck out of the room to have his own time-out having sat tirelessly at my bedside throughout my stay in hospital. I must say, a few weeks on now, I am blown away by the kindness of Kiwis. I have had endless visits, meals made, pick-ups for walks, flowers, coffees, sweet delights and well-wishes. I was heavily on drugs so I had to write down who had been to see me, otherwise I would surely forget….but each and every visitor was appreciated, helped pass the time, made me smile, tried not to make me laugh – the agony- thank goodness for my coughing pillow….!
Ah yes, coughing pillows…..
The nurse had given me a lecture about this the night before my surgery, which had gone completely over my head as I was far to preoccupied with my nerves to listen. After abdominal surgery, coughing pillows become your best friend. For my surgery, a giant L shape was cut down from my sternum to just above my belly-button and across to my flank. In this process, of course, huge amounts of abdominal muscles are sliced through, leaving them rather broken and painful afterwards. It’s amazing how much you discover your ‘core’ muscles are responsible for…..pretty much everything! Every movement you make involves some part of the core, therefore mobility is nigh on impossible without pain.
Breathing, lying, turning, sitting up, standing straight, walking, talking, laughing, coughing……all agony!
Seriously, no lesson is required by a nurse….you grab that pillow and clutch it tight to your tummy, like a child clutches his teddy bear, thankful for the comfort and fearful of losing him. When it drops from the bed or you lose sight of it momentarily, panic sets in. It’s just a pillow…..but sometimes the simple things are the most effective.
I remember my first shower, after 2 days in ICU where showering is not high on the list of priorities, you feel pretty grim. It’s a fine line between how grim and dirty you feel, and how much pain you can face to endure the shower. You know it’s coming….but you’re in denial. In she comes, bright and breezy “Let’s get you in that shower for a nice scrub….it will make you feel a million dollars!”. Yeah right.
Dad gets kicked out and after a quick press of my pain pump, I’m hauled up from my bed by two nurses, reluctantly and painfully. One nurse goes in with me, disconnecting lines and carrying my bag of pee as she wheels me in on a chair… can hardly keep my head up and nausea has already started to creep in. Again I start to feel resentful that my condition is so much worse than I was prepared for. Resentful to whom? I have no idea……I’m just feeling pretty damned sorry for myself by now.
Hospital gown whipped off, suddenly I’m aware I’m naked and there’s a big mirror in front of me. I slowly lift my head as the nurse splashes and soaps me gently all over my body. All I can see is this frail person, who I’m sure isn’t me. She has a very pale face with big black bags under tired puffy red eyes and she’s slumped like an old lady in the chair. She’s got lines coming out of her neck and her arms. Her belly is swollen and there’s a huge blood-stained dressing across her tummy. She looks so sad.
Suddenly I’m next door in my room again and there’s general panic around me…. a nurse is pumping my arm full of something from a syringe, my Dad is there holding my hand and I’m pushing him away. Pushing my Dad away, what has possessed me? I can’t think straight, the nausea is consuming me. I hear an Irish lady’s voice saying she knew getting me up was a bad idea. Just let me lie down, is all I can think. There’s a conversation about how they need to try to get me to sit in the chair…..I’m too sick. Just let me get into bed again! This is pretty much how it goes for my first few mornings on the ward, and I would pay for it later in my lungs. The problem is, after major abdominal surgery, your lung often collapses and the only way to re-inflate it is to move and breathe deeper! I was given a little breathing gadget too to inflate my lungs, 3 balls that you would have to try to pull up with your breath and hold for 3 seconds, sounds easy….no. Physios came and went, tried to get me on my feet for a walk and soon enough my head would spin, blood pressure plummet and nausea would creep in. I would only manage any sort of mobility in the afternoon, usually with the help of my Dad or James doing his evening Breathing Boot Camp sessions – he would walk backwards ahead of me as I shuffle with my zimmerframe and later without, telling me to breathe in, breathe out, chest up, look at me! I’ll tell you something, that is one good man I found there….I didn’t think it was possible to be loved so unconditionally. All he cared about was me getting better……. during my dark insecure moments in the last few weeks where I would worry he must be fed up with me by now, he would reassure me: ‘nothing matters to me apart from you and you getting better….everything else is just noise!’. It takes a very special kind of person to support someone so selflessly through chronic illness. I’m so lucky I have someone that special.
Someone that special, can also be that naughty! James would arrive early in the morning, chat up the young trainee nurses to go get him toast, even eggs! He would then arrive on the evening, take over from my weary Dad after a day ‘on watch’ and he would chat up the nurses again to get him wine! He even managed to get a red wine delivered to him whilst I was in ICU….then the charge nurse arrived the next morning and saw the empty glass next to my bed, well you can imagine the reaction!! In my drugged state, I couldn’t even think of a good story as to why it was there, shame really!
James also developed a ‘special’ relationship with my lovely Irish nurse, who’s jolly nature kept me going for the week. The first morning she met him, half way through munching on toast he shouldn’t even have, he introduces himself as Horrace. Poor woman, believed him when he refused to back down. I’m lying there cringing and clutching my pillow as the giggles escape and my tummy muscles burn with pain. He knows exactlly how to make me laugh, and never tried to avoid it. Despite it being a very rough week, I remember so many funny times with James. They do say laughter is the best form of medicine! You go through a roller coaster of emotions, and sometimes you don’t know whether to laugh or cry…..James and I certainly went through both of these emotions together. Squeezing onto the bed beside me to cuddle me before he left in the evening, it shocked me to see the tears well up in his eyes and roll down onto the pillow. It was as tough for him as it was for me. It certainly was a week that inevitably brought us infinitely closer……but a week I hope we never have to repeat.
Every day my surgeon and my anaesthetist would visit me morning and evening without fail. They would check how I’m feeling, check pain relief, check bowel movements. The problem with heavy painkillers, particularly opiates such as morphine, is they slow down your bowels. Even though you don’t feel hungry and you’re only managing small bits of food…..after a week of no movement, you begin to get panicky. Laxatives at-the-ready…..and everyone cheers when you have your first poo! It’s quite amusing, nurses and doctors ask those questions: “passing wind?”…..”any bowel movements?”. At first it’s a bit embarrassing, but soon enough you’re happily telling the nurse or anaesthetist the detail of these things, often in front of an awkwardly listening visitor who really doesn’t want to hear about it. You get quite blasé about sharing graphic information…..you’re lying there with your bag of pee with your catheter pipe in full view for goodness sakes, pipes and lines coming out of your body from every angle, nurses popping in and out to take blood in front of people, you forget eventually what is acceptable for public viewing and hearing, and you don’t really care any more!
Thursday evening my surgeon came as usual to visit but this time we knew it was with the pathology results of my tumour. After being resected, it had been sent away for testing and my surgeon had hurried the process, knowing my Dad would be leaving after the weekend to go back to Spain. We were all naturally anxious to hear the news and the atmosphere was pretty tense. Even he looked pretty emotional as he relayed the news….made me realise how dedicated these people are to the well-being of their patients. He told us that the whole tumour was encased in a sort of membrane, which he carefully cut around leaving the whole thing intact. There were no signs of damage to the exterior of the tumour, leaving almost zero possibility that any was left behind. Even the part they were most concerned about, where it was growing into the vena cava, he managed to cut cleanly around it, with no chance of any cells being knocked off or left behind. Quite an incredible bit of surgery and we were all obviously delighted by the news. He said the next step would be to see the Endocrinologist who would take care of my ongoing follow-up, to investigate why it was there in the first place, carry out genetic tests and ensure regular screening against any recurrence. That c-word lurking again in my mind, I had to ask the question that had been haunting me….did I/do I have cancer? You could see how difficult it was for him to answer this question….but ultimately he said I had a primary cancer and he was absolutely certain he removed all of it before it had the chance to spread any further than my vena cava. Therefore cancer gone. Despite being such a traumatic experience, I think we all realised right then just how incredibly lucky I am. Every cloud has a silver lining.
That night Dad and James stayed for dinner with me as a little celebration.
The week went by like that, and I can honestly say I would not have gotten through it without the support of my surgeon, anaesthetist, the nurses, my friends who visited, the gifts and flowers that were sent (James said it was embarrassing to see my window from outside – mine was simply overrun by the colour of all the beautiful flowers sent to me).
But that week, I must say, that week was a week I can never thank my amazing father enough for. He really has the patience of a saint. He sat and witnessed things that a father should never have to witness, he sat patiently as I slept, reading his iPad quietly to himself.
The day he had to leave was a truly awful day. We had all hoped that I would be able to go home before he flew away but I just wasn’t quite well enough. So he came that morning, as usual….but then had to say goodbye a couple of hours later. I cannot express how much my heart broke…..and I could see his was breaking too. After a teary cuddle, he finally left me there sobbing, the kind of tears that choke you……to get on a plane to go all the way back to the other side of the world. Again, guilt consumed me – why could I not be stronger? How could I let my Dad leave seeing me so upset?
If you’re somebody who has chosen to live so far from home and family, you’ll appreciate the pain we both felt. At times like this, you need your family. I was so lucky my Dad was able to travel so far to be with me. Again, every cloud….
The next day I pleaded to go home. I had had enough, and it wasn’t the same without Dad there. I just couldn’t look at the corner of the room where he had been sitting all week without feeling upset. James had taken that next week off work to be with me, central line was out, the epidural and catheter had been out for a couple of days, I was a bit more mobile and all my lines had slowly been taken out over the week one by one.
I was almost human again and it was time to go home.