OK so I’m just going to do one mega post because I’d like to finish my story, so settle in and make a hot drink (not too hot, did you see the research that has linked hot drinks with throat cancer!? Keep it below 65 degrees and you’ll be a-okay apparently)
So last time I left off with just coming out of ICU and being moved to a ward. I don’t really know when I realised or was told I had a stoma (colostomy) I guess I just knew that would be the outcome of the surgery. I actually really didn’t care at all that I had it, I had survived and was still battling and that’s all I really cared about. I was so focussed on making small improvements or getting through small tasks, like trying to walk a few steps or eat something that I really wasn’t thinking about the impact the stoma would have on my life. I’m very much a ‘adapt to the situation’ person, I think we all are, it’s just an innate part of us, so adapting to having a stoma wasn’t nearly as bad as I thought it would be. And it wasn’t permanent, I would be having more surgery to get it reversed at some point.
I had terrible chest pains from the gas they used while I was in surgery, it moved all through my chest and shoulders. I was encouraged to breath as deeply as I could so I wouldn’t lose the use of the bottom of my lungs from inactivity but when breathing hurts so much it’s very difficult to take deep breaths. The ICU doctor came up to see me a few times and gave me some advice, like if I have severe chest pains I need to call a doctor right away. The surgical staff came to see me every morning before they started their surgeries, normally around 7am, seriously these guys are some hard working people. I have to say the staff at this public hospital were all absolutely amazing and I feel very lucky to have received such good care, it was SO much better than the private hospital, both the staff and the facility.
I was still sharing a room but there was just two of us and I was next to a big window which helped a lot. My husband is such a superstar, he stayed by my bed all day every day, my family were also there majority of the time. My mum, who worked at the hospital, would come and see me before work, at morning tea, during her lunch break, afternoon tea and after her shift ended. My sister shaved my legs for me as I didn’t want all the nurses and doctors to see my hairy legs (priorities!) I’m so grateful for all the support they gave me, I was a mess, I was crying a lot of the time and I was so frustrated that I wasn’t feeling better. I can’t even describe how bad I was feeling, sick, tired, so hot from a fever, very sore from all the pain, worried about not getting better. I didn’t want any visitors other than my family, most of my friends had no idea I was in hospital, I was just so focussed on my world and getting better I couldn’t even think bout seeing other people.
About a week had gone by and I wasn’t really improving, the pain was just so awful despite all the drugs I was on, the pain management team came to see me a couple of times and changed dosages as well as trying new drugs. I’d developed an infection at the surgery site, the treatment was to open it up and let it heal from the inside out, this was no small cut either, it ran vertically from just above my belly button down to my pubic bone. I was given a local and some of the stitches were cut out by one of the junior surgical team members, I couldn’t really feel anything, then one of the senior staff came to have a look and she decided it wasn’t enough so she started removing more stitches where there was no local anaesthetic, WOW that hurt!! I was screaming and crying and squeezing my husbands hand with all my strength, I felt bad for my room mate, it must have been awful to hear. Afterwards the lovely nurses came rushing in with a syringe of morphine as they heard me cry out in pain but I refused, I really hate morphine and how sick it makes me feel.
Later that day I was told I had an abscess in my stomach which needed to be drained, I asked if they could do it while I was awake as I really didn’t want another anaesthetic. I was taken down to radiology on my own as my Mum and husband weren’t allowed to come with me. I waited there for a long while scared and unsure of what was going to happen. (If you get a bit queasy about medical stuff I suggest you skip this bit!) I was taken in to have a CT scan so they could pin point exactly where the abscess was, they then gave me a local anaesthetic in my lower back and inserted a tube into my stomach all while I was awake. It didn’t hurt but I could feel it in my stomach which was weird and pretty horrible, I reached out and held the hand of the nearest nurse while sobbing, luckily she didn’t mind. The tube was left in so it could continue to drain until there was nothing left, it was in such an awkward spot I could no longer lie on my back and I could only lie on my left side. After the procedure I was moved to the waiting are before being taken back to my room, so there I was all by myself, laying on my left side facing a blank wall silently crying. I felt so defeated but I also felt determined to fight and get better.
I was taken back to the ward where my Mum and husband had convinced the nurse in charge to move me to my own room, I don’t think I even celebrated that win at first, I was so upset and overwhelmed from everything that had happened that day. I was at my absolute lowest that day, it was that day I actually thought that this might be it for me, that I might not make it out of hospital. I was septic, my blood was infected I was basically a ball of infection, I was on several different antibiotics, I was given a new fluid bag of antibiotics through my drip every two hours. I was so weak I couldn’t even walk, I held onto my husband with one hand and a walking frame with the other, I could barely walk twenty steps, ten up ten back, that was my goal. I couldn’t wash myself, I sat on a chair in the shower while my Mum helped me, it was unbelievably exhausting just having a shower. The anaesthetist came to see me quite often, he’s a friend of my Mum’s and was very concerned for me, he suggested that I go outside in a wheelchair just to get a bit of air and get out of the hospital for a bit. My husband wheeled me all around the grounds, it was winter so it was freezing but if felt so good breathing the fresh air and having the sun on my skin, it really did help to lift my spirits.
In the days after that abscess was drained I began improving, I could walk around the ward, I started eating small amounts without being sick, I started to feel stronger and began to laugh again. The drain was removed after about a week, I had blood tests every day which were showing that the infection was on its way out. The wound in my stomach was improving slowly, I had a vac dressing to encourage the healing as it was still healing from the inside out without the help of stitches, (skip this if you don’t like medical talk) the vac dressing involved the wound being packed with a type of antibacterial sponge then plastic (kind of like sticky glad wrap) was put over the top, there was a hole in the plastic where a tube goes in and all of the air gets sucked out by a pump so it pulls the wound closed. I had to carry the pump around with me all day like a handbag. I would absolutely dread having the dressing changed, I would start to sweat just thinking about it. I never actually looked at the wound, I would put a damp cloth on my face when they changed the dressing, I don’t think I would have been able to handle seeing that.
All in all I was in hospital for twenty days, I had lost nearly ten kilos and looked like absolute crap but I felt so much better. I was discharged from the hospital and put on the ‘hospital I the home’ program where a nurse would come and see me every day to change the vac dressing and I would get blood taken once a week. I was actually really scared of coming home, I was terrified that something else would go wrong but having the nurses come to my house every day was a huge comfort to me. My husband worked from home so I was never on my own, I still needed a lot of help dressing and showering but at least I could stand up and walk around on my own. The vac dressing was downgraded to a similar but much smaller pump. It was my brothers wedding day few weeks after I left hospital, because my Mum is a nurse and could change my dressing the doctors said I could go, he got married interstate so I had to get a flight and a ferry. I was really nervous but it was actually really good for me, it made me realise I could still do ‘normal’ things, I couldn’t drink or dance and I went to bed early but I was there.
I was so excited to be feeling better, I had had three months off work so I was really happy to be getting back into my normal life again, the wound was healed so I didn’t need the dressing anymore. Just as I thought things couldn’t get much worse it turns out I didn’t have a job to go back to, ouch that really hurt. Way to kick me when I’m down. I felt SO awful, I felt like I had nothing to look forward to. I’ve always worked really hard and have had a good career to date, the thought of finding a new job after everything I had been through was so overwhelming, I cried for days and felt so heartbroken to lose a job I’d worked really hard to get. I pulled myself together and started hunting for a new job. Meanwhile I wanted to feel like I was contributing so I painted the hallway, I guess that sounds a bit crazy but I had never lost a job before and it made me feel really useless, I’ve always made my own money and I hated the feeling of spending my husbands money. Three weeks later I started a new job, I had a couple of offers and lots of interviews lined up which gave me a bit of a boost. I felt so happy to be working again.
Since then I’ve had more surgery, my colostomy was reversed and I was given a ileostomy, which is the same thing but with the small bowel instead of the large. This has (hopefully) allowed my large bowel to heal completely so the join wont break down again. I’m having my ileostomy reversed in a few days, I’m nervous but I’m hopeful everything will go as planned. Hopefully next time you hear from me I’ll be stoma free, how cool would that be, maybe I’ll sit in a tree… too far with the rhymes? Yeah I thought so.