At the beginning of this story I said that I felt strong enough to write it down. This episode is causing me a little more trouble as I have to again face my emotional responses after leaving hospital. I’ve had several attempts, but it’s like opening up an old wound. Please forgive me if I waffle a bit.
After five days and nights confined to one room I was more than ready to escape back to the comforts of my own home, despite all the care I received in hospital. I am particularly grateful to the nurse who gave me my first shower. She wrapped half my upper torso in something like Gladwrap to keep the scar dry, then while I sat on a plastic chair, soaping myself and rinsing with the shower hose, (the warm water felt like bliss) she kept the drainage bottle dry. She then washed my hair while I held the bottle out to the side. Once I was dry and the padding over my scar replaced, she helped me get into my own nightgown instead of the ugly hospital one. We had a good laugh as I tied myself in knots with the cord. Back in bed at last, I was exhausted but clean and happy.
David had said that he didn’t want to see me trying to cope with tubes coming out of me and the surgeon had told me that I should be able to have the drainage system removed before going home on Monday. That didn’t happen. Instead, I was shown how to check that the suction cap on the drainage bottle was working and to measure the amount of fluid at the same time each morning. I was also shown how to change the bottle once it was full.
In hospital this was all done for me. I had assumed that someone from Silver Chain, the West Australian home nursing system, would visit me regularly to check the wound and make sure my recovery was going well. When I asked about this I was told that as I didn’t need help with toileting or showering I wasn’t eligible for Silver Chain. I told them that my sister would stay with me, so maybe that’s why I was expected to manage.
On Monday morning I was ready for the surgeon by eight o’clock. Dawn, his breast specialist nurse arrived at about ten to tell me that Doctor was engaged with a sick patient so she would do the final inspection. She removed the padding and bandages, leaving the sterile strips that covered the stitches.
‘You must keep them dry and intact at all times,’ she insisted ‘and make sure that the drain site is kept dry. If there’s any sign of infection – redness, swelling, pain or discharge, see your local doctor or get to the Midland Hospital.’ Her tone was very serious.
That was when it dawned on me that if I got an infection in the wound I would be in big trouble. Hand washing and disinfecting with antibacterial sanitiser was a constant for everyone, including me, while in hospital. We would have to continue this routine at home.
Dawn was on the phone to my surgeon when Sue arrived to collect me. Parking within a distance that I could walk was impossible, so, eventually, she parked in the five minute zone outside the front door, intending to race up and down in the lift. One lift was out of order and the other one was repeatedly filled with patients on trolleys. With signs everywhere warning of heavy parking fines, she was distressed on arriving half an hour later. Dawn rang security to explain the situation, saving me from a hefty fine.
We were about to leave, thinking that the doctor’s approval via Dawn was all that was needed, when an officious nurse walked in, waving a pile of papers. I heaved a sigh, as she was the only unpleasant staff member I’d met and not the person I would have chosen for this final assessment.
‘There, sign this,’ she said, handing me two doubled-sided sheets of paper.
‘Thank you. I’ll read it first.’ I sat down at the small table to do so.
She flapped her hands in frustration and grunted
‘I don’t sign anything without reading it,’ I said.
‘It says here, that I’ve been given follow up medications and instructions for their use.’ As neither of these things had been done, I pointed to the line on the page.
‘Yes. When you’ve signed, I’ll do that,’ was the response from Miss Efficiency.
This was not the sort of treatment I expected or deserved. I raised my eyebrows and waited while she sorted out my medications and handed me a sheet of instructions. I then signed the form and handed it back to her.
Loaded up with toiletries, clothes, books, laptop, esky and cards that I had accumulated over five days, Sue and I eventually got to the car, assisted by a porter with a trolley and a nurse who made sure I left the premises safely. I had a problem with the seatbelt cutting across my chest and pressing on the scar. Feeling grateful to the female prisoner who had made my special cushion, I tucked it under the belt on my shoulder, which made a huge difference.
‘Goodbye, Hollywood Hospital.’ I sighed with relief as we headed for the hills.
David was delighted to have me home. He wanted to give me his usual bear hug, but quickly realised that a peck on my cheek would have to suffice. He helped Sue to unpack the car, but as I was lying on the lounge room couch, in pain and exhausted from the journey, he quickly disappeared, leaving my sister to make us a cup of tea and unpack my things.
I felt his tension over the following weeks as he dealt with his fears about my health and our future. He’s a very loving, soft hearted person. After years of caring for his late wife as she slowly lost her battle with cancer, my big strong man needed to hide away for much of the time. I know that he couldn’t face the possibility of losing me too.
I too, was scared and I’m eternally grateful to my darling sister for the strength she demonstrated at that time. I could not have managed without her. She did most of the shopping, cooking, washing and taking care of the garden for the month that she stayed with me.
Fortunately, I had renovated the guest bathroom to allow for wheelchair access into the extra large shower, thinking that at my age, I might one day need it. An outdoor plastic chair, scrubbed to hospital standard, was in place so that I could sit in the shower recess, detach the hose and enjoy a good shower.
Following Dawn’s instructions about keeping the wound dry, I was supposed to paste plastic sheets over my left breast area and around my back to cover the stitches. Impossible to do on my own, especially as the plastic, like Gladwrap, needed two hands to stop it from suctioning in on itself. We had lots of giggles trying to get me suitably waterproofed in the vital areas. I needed a rest before I even got into the shower. Sue hovered around me, concerned that I might have a giddy spell and lose my balance. After the first attempt, when she got nearly as wet as me, she wore her swimming costume. She would have made a good nurse, ever vigilant and helpful but allowing me to do what I felt that I could.
I don’t know how some women go back to work soon after that operation. I recovered well, thanks to all the love and care that I received, but I was tired most of the time and for at least the first week, did nothing more than walk from the bedroom to the bathroom, then lie down again.
First thing each morning I measured the amount of fluid in the drainage bottle. At ten every day a Hollywood Hospital nurse phoned me for the result. It went from 60 mls to 40 and I felt elated. Then it went back to 60.
‘You’re doing too much,’ was David’s assessment and the nurse agreed. It was back to lots of lying down and reading. I was desperate to get rid of that contraption.
On the 14th December Sue drove us back to the surgeon for my post-op check. David came in with me. The doctor had the full written report from the pathologist and told us that he was pleased with the result. He assured me again that there was no evidence of cancer in the five lymph nodes he had removed. He was satisfied that he’d got a good clean margin out from the cancer and there was no sign of malignance having spread beyond the tumour. Because it was ER positive, I should take oestrogen suppressing medication for the next five years (after the chemotherapy treatments) which he said would give me a good chance of keeping the cancer at bay.
It was ten days since the operation and at last the fluid loss from my wound was down to 20% over 24 hours, so the drainage bottle could go. We went behind the curtain for the doctor to examine me. He carefully removed all the sticky strips and had a good look at the scar, declaring his satisfaction with the result. One small area hadn’t quite healed, so that got a fresh piece of tape. The dreaded cord came out and that small hole was taped over. While this was going on, my gaze was fixed on the ceiling. I couldn’t actually have seen much while lying down, but I was too scared to look at what had once been my lovely breast.
Once I was dressed and back with David, the doctor gave me a copy of the report and explained again why it was classed as a grade 3 cancer. Although I knew the grading meant the tumour was large and growing rapidly, I was alarmed to find that 90% of the cancer cells were multiplying. This is unusual and not good.
The surgeon was insistent. ‘If any cells escaped at any time, before or during the operation (and we don’t think they have) but just in case, I seriously recommend chemotherapy.’
He knew I had not wanted to go down that path, but I realized that I really didn’t have an option.
‘Okay, when do I start?’I reluctantly asked.
He explained that I would need to see the oncologist and I would probably have the first treatment in about a month’s time, allowing six weeks from surgery for my wound to completely heal and for me to build up my strength ready for the next onslaught.
On the way out the door, I asked him, ‘How could this happen to me when I’m so healthy?’
‘Your age and your sex,’ was his response. ‘But,’ he added, ‘it’s only because you are so healthy that we’re offering you chemotherapy treatment. If we didn’t think your body could deal with it, we’d do nothing more at this point.’
I still don’t know how to take that.
With cord and bottle removed and my scar exposed, I decided to shower on my own in the ensuite bathroom. Sue offered to sit on the bath in case I needed her, but we compromised by leaving the door open. I still hadn’t seen the result of the surgery.
Being short sighted is sometimes an advantage but, coming out of the shower, I couldn’t avoid seeing that ugly scar. I looked like something in a monster movie. I closed the door and cried. How could anyone love me when I looked like that. I’m crying again as I write this. Having one breast made me look ridiculous. The scar was so uneven; nothing like the neat photograph we were shown before the operation, when I asked what to expect.
David is an artist. He loves beauty. He had always seen me as beautiful, and frequently told me so. I couldn’t believe that he would ever see me that way again, once he saw this ugly replacement for what had been an attractive part of me.