At home I take a shower to wash off the smell of cleaning products, wound disinfectants, drugs, food, urine and other odours from the poorly ventilated hospital room.
To boost my mood, I ask my husband to pick my brightest pyjamas from the shelves. In the hospital I passively accepted a green-grey pyjama that pushed me immediately into the role of the patient. The shabby fabric made me feel like a dishcloth. It's a well known fact that patients who get dressed in their own gear will walk more and recover faster. Reasons enough to abandon hospital gowns altogether, I think. I hope that my red and white polka dot pyjamas will make me feel real again.
*
Nutrition
While I showered, my husband and our youngest, not prepared for my early homecoming, quickly heated up the chicken soup I’d made weeks earlier. I’m usually fond of homemade soup with lovage, onions and chives from the yard but as soon as I smelled the spices, I felt disgusted. I tried to be brave and swallowed a bit of the broth but instantly put my spoon down.
How weird. I had been looking forward to finally having a good meal and certainly hadn’t expected that my lack of appetite would continue at home. In the hospital, whether porridge, mashed potatoes, buns with cheese, boiled carrots, fish or red beet salad, one bite was enough to make me gag. Yoghurt and tea with honey were the only things that went down well. “You should eat more,” the nurses kept saying. I tried, I really did, but my bowels weren’t functioning properly, I was wearing a tight abdominal binder and found eating from the bedside tiring for my back. Also, I thought it was the hospital food that made me feel nauseous.
I was mistaken. Later I learned that appetite loss is a common problem after major abdominal surgery and that it can easily take weeks before the desire for food returns. My lack of appetite had nothing to do with the quality of the hospital food. Why did no one correct me on that?
*
It is thanks to my youngest and his girlfriend who’d arrived from Edinburgh a few days later that I gradually regained my appetite again. Day by day they did their utmost to cook balanced meals and make sure I got the much-needed calories. My taste had changed so it was a matter of trial and error. By the time the couple set off for Scotland, I ate small portions again.
*
Cold Chills
The first night at home I went to bed around 21:00. As soon as I laid down, the cold chills came over me again. Teeth chattering, shivering under the duvet, I felt cold to the bone, stressed and scared. My husband and our youngest, initially unsure what to do, decided to wrap me up in woolly blankets and put wheat bags (heated up in the microwave) under my armpits. After half an hour or so I slowly got warmer and finally fell asleep.
I knew that postanesthetic shivering or hypothermia happens when patients regain consciousness shortly after surgery. But my first cold chills took place eight days after my operation. It didn’t make sense and I didn’t know whether this was normal or whether I was dealing with a serious complication. It frightened me. The cold chills continued for a week or two and then gradually disappeared although I often felt cold during an otherwise summerly and hot June month.
Much later I read in my notebook that the cold shivers started on the day my epidural was removed. However, I couldn’t find any scientific correlation between the two. But I did read that cold shivers can be related to a heightened period of anxiety. I wish I had known earlier.
*
Battered Body
Back home I also discovered that like in the hospital, my body still felt dilapidated. Whether I sat on the wooden dining chair, on the couch or in the comfortable leather chair, I couldn't sit for longer than 10 minutes in the same position. I kept turning and tossing in bed although my mattress is way more comfortable than the hospital bed. I slept somewhat better, especially after the antibiotics for my bladder infection started to work. Still, it took weeks before my body could quietly sit in the same position for 30 minutes.
*
My Scottish “daughter”, who noticed my restlessness, told me about a social health nurse who came to visit her dad at home after a colon surgery. “It was so good, not only for my dad but also for my mum to be able to ask questions and talk about their insecurities and fears,” she said. “Do you have such a support system in Finland?” I told her that I received a phone number. Pensively looking at me, she (a psychology graduate) asked, “Would you do that Ata? Would you call if you had problems?”
The number of the ward is in my mobile. But are cold shivers, unrest, lack of appetite or physical discomfort sufficient reasons to call? I’d already mentioned my feeling of discomfort to the nurse when I was in hospital. She had given me a protein drink and a pill but no explanation. If I had excruciating pain, I would take a painkiller but it’s not that I was in agonising pain. My body, bones, muscles and nerves were tense and strained and I felt stressed about it. Is that enough reason to call?
A month later it finally dawned on me that I was underestimating my anxiety, tiredness and the confusion that came with my physical discomfort. Of course I felt insecure and tense about my body and its reactions. I remember telling my family that I’d imagined that my stomach resembled an oval cookie tin. “It feels as if two Dutch “stroopwafels” (bladder and bowels) are firmly glued to the bottom of the tin but I fear the Danish butter cookies (other abdominal organs) will crumble and break into a hundred pieces as soon as I make an unexpected move,” I explained. Not knowing how to interpret unfamiliar signals of my body made me constantly feel as if I was on the edge, indeed.
*
Scholarly Stuff
By the time I’m writing this blog I decide to go online. I learn that pain is very common after abdominal surgery and that it can have many reasons. For instance, the pain can come from the tissues in the internal organs, from the scars, the abdominal muscles, or the damaged nerve cells. Also, twelve hours on a surgical table can cause pain in the lower spine or back.
I wish I had known earlier. Why did no one tell me? Clarity and reassurance would have helped enormously.
While I’m scrolling through medical literature it crosses my mind that the suggestion of my Scottish “daughter” about a visiting social health nurse could have taken away a lot of my discomfort and stress.
Just someone to acknowledge my fears and educate me on my discomfort would have helped me to feel calmer, I think.
It also dawns on me that the transition from being under full-time supervision in hospital to not being seen by a doctor or nurse for a month shows quite a hiatus. How on earth do other CRS (cytoreductive surgery) patients keep their spirits up at home, I wonder. Do they constantly call the hospital? What questions do they have? Or should I have asked the surgeon before the operation what recovery at home would entail? But when we met, surgery seemed like an endpoint. At that stage I wasn’t able to look over the fence and comprehend what would happen afterwards. I just don’t know but CRS is associated with postoperative complications and it’s evident that the lingering uncertainties about the effects of a twelve-hour surgery made my rehabilitation month unnecessary wearisome.
I could conclude that I’m just not good at making phone calls (I prefer communication by text message or e-mail). However, before pinning myself down, I decided to ask one of the nurses during my seventh chemo treatment. “What would have been good reasons to call the ward?” I asked. Her answer was clear. “You should call when you have fever or serious pain,” she stated.
Of course it's a problem if nurses don't pay attention to the emotional needs of their patients. But what if the patient finds it challenging or too difficult to ask for emotional support? I mean, who wants to come across as a whiny or demanding patient? I certainly don't. Nevertheless, I realise that I should have made that phone call and talked about my fear and insecurities.
Still, it would have helped me if someone would have reached out.
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