I had a real sense of security when I was in the hospital. It was a safe environment for me to become accustomed to the drains and dressings. However, when I went home the rest I got was vital. The hospital isn’t the most peaceful of places. I slept so well that first night at home.
Small adaptations to my NORMAL sleep routine were needed. I positioned myself (with Craig’s help) virtually upright in bed against a stack of pillows and probably the best purchase – a V shaped pillow (I definitely recommend!) The drain was on my left side so I swapped sides with Craig, so I could sleep on the left side of our bed. The wound drain could then be safely placed over the edge of the bed onto the floor. This change in sleeping arrangement was odd initially, However, total exhaustion meant I got to sleep. I know it may seem such a minor thing to mention my sleeping habits, but I was so exhausted that good, quality sleep and rest was initially the most important part of my rehab.
Another challenge I hadn’t envisaged was repositioning myself in bed. This isn’t the easiest to do in the middle of the night with only one arm to assist. There was always a lot of shuffling around the bed, moving in a very awkward way along with a number of swear words! Craig has also become an expert at pillow positioning….. move over Florence Nightingale.
On my second day home I had a bit more energy, my long sleep had helped. However, perish the thought I would have an uneventful return home….the tubing of my wound drain separated from the collecting bottle (this means the vacuum had stopped working and therefore the drain is no longer working.)
Why do these things always seem to happen late on a Saturday night?! I phoned the ward I had been a patient on and arranged to go there straight away to have the drain changed. I was anxious that leaving the drain until the next day would allow fluid to build up and potentially lead to further problems. When we arrived the nurse was waiting for us and she had everything ready for a quick change! Once the drain was changed the bottle began to fill again with fluid. Almost as efficient as a Pit Stop in the Grand Prix, twenty minutes later we were back on the road and heading home to sleep. The drain issue had happened twice on the ward whilst I was an inpatient. The connection is very poorly designed and seems to get dislodged very easily, any medical equipment designers out there please take note….
My days fell into a routine of pain relief, shoulder exercises, a short walk and lots of rest. Not the most exciting but exactly what I needed. I continued to eat two eggs every day alongside the Fortisip drinks which I took twice a day. Both are high sources of protein and prescribed by my surgeon to promote wound healing.
I would be lying if I said I was comfortable, there was a significant amount of discomfort at the wound site. However, regular pain relief helped, it allowed me to keep my arm moving and perform my exercises properly. In addition, the daily manual drainage massage of my left arm was moving any fluid that was gathering around my armpit and shoulder. Craig was also massaging twice a day across my shoulder blades to help move any fluid collecting there (I had also had axillary lymph node clearance). The skin around the back of my arm and armpit was extremely sensitive to the touch, almost like very bad sunburn in some areas whilst in other areas completely numb. In order to complete the surgery, nerves supplying these areas had to be cut and having an altered sensation is a common outcome. This can be temporary or permanent. However, the daily massage may reduce the skin sensitivity over time.
Showering and dressing were probably the most tiring activities, juggling the drain and PICO dressing weren’t getting any easier. I continued to put the PICO control under my hat and would have to swap the drain from hand to hand whilst I showered (on the days Craig didn’t hold the shower for me!) I found I needed to sit down and rest before I could even contemplate getting dressed after a shower, as I was just too fatigued. This overwhelming tiredness would just suddenly appear. Everything needed so much more time and planning than normal. This in itself adds a lot of frustration. I am still a young, fit woman it was really difficult to adjust to feeling so totally helpless at times.
After a few days my energy levels began to plateau, I felt much better than during those first few days in hospital. However, the energy expenditure of only using one arm when doing even the most basic of activities was energy sapping. Maybe my expectations were a little unrealistic, I hadn’t expected to feel as tired or as vulnerable after the surgery. I think I had prepared myself for the emotional impact of losing my breast, but I hadn’t considered the significant emotional impact my fatigue and my inability to cope independently would have. I have realised that I am quite stubborn and get very frustrated when I have to ask for help. (Family and friends probably already knew this about me!!) This has been a VERY sharp learning curve for me. I have had to accept I need help. To open and close the car door with only my right arm is almost impossible, I struggle to put my socks and shoes on and tie my laces (so I went out and bought a few pairs of slip on soft shoes)…I know ridiculous isn’t it, such basic things. However, I know these are just temporary issues and I will get stronger with time…. I just need to be patient, this is just the beginning of the building up process…
Thanks so much for these blogs Lorna, I'm sure not the easiest to write! Thank you for your honesty and bravery! Thinking about you in all that your going through
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