This is hard to write because I don’t enjoy reading about people who lurch from disaster to disaster in their lives and I’m sure that you don’t either. They often present as victims who never overcome the challenges. Sadly, I feel a bit like I have lurched from complication to complication but I can assure you, I have never felt like a victim. What I have done is to duck and avoid writing this – masterful procrastination!
Since my last post, things have gone horribly wrong and it’s just rotten bad luck.
In April, I went into surgery with great hope that the obstruction that had developed, would be corrected and once I had healed, I could get on with the business of living my life as best I could.
It wasn’t an easy surgery. Seven months following my first surgery, my surgeon encountered a gut that was friable and very difficult to join. The joins leaked and he spent many hours trying to keep as much small bowel as he could. I was taken to surgery 5 days in a row. I think the first surgery was something like 9.5 hours and then 4 more days of trying to manage it and keep me alive. I was unconscious in ICU for all of this and the following 4 days. Nine days unconscious in all and what a shock when they eventually woke me. I was really touched in the days that followed to receive some visits from the nurses from my ward.
Once again there is a silver lining. I’m so grateful I have the surgeon that I do, because I may not be here, if not for him.
I have lost a lot of small and large bowel but still have just enough to live with – thank goodness.
The wound was left open and it was packed daily. Today, it has healed completely apart from a small opening where I have a suprapubic catheter for flushing my pelvic area and an opening at the top where two ends of my upper small bowel sit. There is still a faint chance that a long way down the track they may be re-joined and I will be able to eat again.
I have spent quite a long period post op with a septic tummy. It’s caused lots of infections and once again I’ve had to face the prospect of not surviving. It has been so very challenging for myself and my family.
Once again, what is required is time. Time for things to heal and settle down.
Every now and then I hear a voice in my mind whispering, “You’ve failed.” I have to grab that thought by the throat and put it front and centre. I have to face it and destroy it before it slinks back to the dark corners of my mind. I haven’t failed. Nothing I did or anyone else caused this complication. It’s pure bad luck. I keep listening to my thoughts to keep myself in the best possible state of mind.
So, what has that been like to go through?
I’ve had to really face my mortality. I came close to not being here anymore and I’m not sure I realised how sick I was until I was a little better. Doesn’t make sense does it? I’ve had the opportunity to talk with a psychiatrist which was so valuable. I was able to see that I do have a good sense of myself and my mental approach to facing this challenge is clear and calm. I have an amazing team of specialists and allied health professionals who all give me the very best care they can. But even they can’t control some things.
Don’t think there is no grief and sadness. My daughter hasn’t had her children yet and I feel as though I haven’t completed my life tasks. I want to be there with her when she has her children. I also am filled with hope that I can continue to live and enjoy life with my small family. If I have any impact at all on my chances of longer-term survival then I continue to try to stay calm and positive. When I am given really hard news to absorb, I do get “knocked off my perch” temporarily and it takes me a few days to get my head back into its normal state.
The sale of my bike, inflatable kayak and surf ski has really hurt. I can’t talk about it without bursting into tears. This makes it all very real and I feel so sad I’ve lost the ability to continue to be active. And that’s perfectly OK for me to feel like that.
However, I am doing as much as I can under the guidance of the physiotherapist. I’m walking laps of the ward again – I swear I’ll wear a line in the carpet in my ward. I’m also doing some strength exercises and I’ve just worked up to doing a 4kg bicep curl…. Woohoo!
Recently, I became somewhat jaundiced and my skin went yellow!! Now we all have colours that suit us and colours that don’t suit. Well yellow is not my best colour. Thankfully the jaundice has resolved and I’m back to my normal colour. Hopefully the problem with my TPN (Total Parental Nutrition) has now been resolved and I can gain back a bit of weight. I did get as low as 46.8kg.
I have done a lot of watching of the SBS Food network. Lots and lots of cooking shows and shows of food from all around the world. I love cooking (and eating) and watching all this cooking is an absolute joy. I keep a kernel of hope alive that I will be able to eat in the long run.
I’ve also done a lot of reading and Emily brings me books from the library and I also use my library app Borrow Box to access lots of books.
One of the books I’ve read very recently is Phosphorescence by Julia Baird. What an interesting read. My girlfriend bought it for me. I suggested that I borrow her copy but she said she thinks she wants to keep her copy and so bought a copy for me. I’m glad she did because I’ll go back to it from time to time. Julia talks about awe and finding those things that will sustain you during dark and difficult times in your life. Her ideas are very much in line with my own and I know that finding joy and gratitude are my ways of coping during dark periods. I’m so very grateful to my friend and to Julia for writing it.
As I’ve healed and the infections have ceased, the subject of going home has been raised. There are challenges for me to continue to live in Hervey Bay and our earlier plan to relocate has been given a jump start. We are putting the house back on the market and moving forward with a plan to live in the eastern suburbs of Brisbane so I can be closer to the medical help I will inevitably need. I also love being close to the water and I’m quite excited in some ways as well as feeling a bit sad to leave our lovely old home. I’m going to get a dog as soon as I can. I’m a true dog lover.
Recently, a girlfriend visited me and handed me this beautiful soft toy saying, “Everyone needs something to cuddle sometimes.”
Well she was right, especially during this Coovid-19 era. I got the nurses to do name suggestions and he is now known as “Ralph”. He sits up with me and watches TV. Some of the doctors have even got to know him. My new cuddle buddy.
The other day I said to Doug, “I’d like to plant a quince and fig tree at our new home.” He said, “That’s fine. I’d like a loquat tree.” And we both want a lime tree. These are our first planning thoughts about our new home. I know we’ll be fine.
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