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Life was going really well. My flap was healed and I was feeling great. I was starting to think, “I can do this.” It was manageable. My flap was still tight and uncomfortable at times, however, now I understood what was happening, it was OK. I was starting to get back into some normal activities. Then I made a mistake.

                Our sewing day!

One of the things I used to do (before surgery) was to have a sewing day with some like-minded friends. We are all sewers and usually get together once a month to have a day to sew, help fit, share ideas and new fabrics. It’s always a fabulous day full of lots of laughter, support and sharing.

We all met at my home so I could lie down and rest as required. It was a very productive day. Usually, everyone brings their sewing machines and their current project. I had started a shirt prior to my surgery and it was time to get it out and finish it. We had a great day and all achieved some good results.

For women, the value of female friendships cannot be overstated. Girlfriends have a wonderful way of supporting, listening and just being there for each other. I’ve found my friends to be all of the above and I don’t think I would like to go through something like the surgery I’ve had without my friends. Sometimes, I’ve had to learn to just accept the wonderful help that’s been offered and that’s been good for me too.

That was a great motivator to start doing a bit more sewing. I can leave it set up on my stand up table and do a bit at a time, as I feel able. Following our sewing day, two of my friends and I had a trip to Brisbane. We visited a great fabric store in Brisbane and all bought some more fabric. Ha! This is one of the hazards of being a sewer. This meant I now have some more gorgeous fabrics to make into outfits. It was starting to feel as if there is life after a pelvic exenteration J.

        Woohoo! At the concert!

I’ve mentioned on more than one occasion my love of music. There was a By the C Concert coming up in Hervey Bay. I had been looking at the tickets and sitting on the fence. Did I feel up to it? Could I manage to go and sit for a while? Eventually I decided to go. Concerts are not Doug’s thing, however, he found me a low camping chair that I could semi-recline in. Perfect! I arranged to meet a friend, Doug dropped me off and I was at the concert.

       Jon Stevens singing his heart out!

Jon Stevens, The Black Sorrows and Ross Wilson sang their hearts out for us. I had a great time but also had a lovely surprise. I was waiting to pick up a food order and the woman standing next to me, also waiting, asked what number I had. There was quite a wait for food. We looked at each other and surprise, surprise it was the clinical nurse from my surgeon’s rooms. Such an amazing coincidence to be standing next to each other amongst so many people and so far from her home. Serendipity! It was great to see her and we enjoyed a catch up.

 

John Farnham was last to perform but I was ready to go home so he didn’t have the pleasure of my company.

              Just had our swim

I had started doing some gentle exercises recommended for people who have had a colostomy. I also started swimming. Well I’m not a very good swimmer and I found that my level of fitness had dropped so I swam a bit, rested a bit, swam a bit.

Ha! About 150m and I was done!!

I had a girlfriend staying who swims regularly and she was a great motivator. We went down to the beach and off she went out deeper while I paddled around in the not so deep water. You see I’m a bit of chicken when it comes to deep water. Not sure I really want to meet that stray shark and have him nibbling at my toes.

       Floating about after my swim

The beach where I live is best for swimming close to the top of the tide. So my swim time is not consistent but is reliant on it being high tide. This isn’t a bad thing. Often I’m swimming during the day when it’s a bit warmer. I don’t mind that.

Life was becoming much more interesting.

 

The other exciting thing that was coming up was going back to the hospital for training in stoma irrigation. Sounds like a weird thing to be excited about doesn’t it?

This is really like having an enema through the stoma. It means the bowel is washed out and once the body becomes accustomed, it means I wouldn’t be at the mercy of my stoma working at very random and extremely inconvenient times. Irrigation means a lot more freedom and control over when the stoma works.

So I was booked into the hospital for an overnight stay to have the training with the stomaltherapist.

Then, the week before I went to hospital, I made a mistake.

I had been doing the gentle exercises and in my wisdom decided that maybe it was time to introduce some more exercises. One of the specialists had said to me that I’d have to work really hard to get back to where I was before surgery. Well it was over 6 months since my surgery and my flap had been healed for a few weeks.

So I did some squats.

“What???” I can hear you say. I know, I know. What was I thinking???

Well I could give you a number of psychological analyses about that decision, but it wasn’t that complicated. It was as simple as feeling really good and deciding it might be time to work a bit harder and do some work on my glutes.

Wrong!!! If you’re having this surgery and if, like me, you’re accustomed to doing quite a lot of exercise, Don’t Do This!! I obviously didn’t think that through.

I had a couple of pretty dark weeks as I contemplated the damage I could have caused with that action.

Fortunately, or unfortunately depending on your perspective, all I achieved was another layer of tightness on an already quite uncomfortable flap. Why didn’t someone ever say, “don’t do squats”?

After my irrigation training I went to see my plastic surgeon and “fessed up”. That poor man. He checked and was comfortable I hadn’t caused any damage….Whew!! He also fully explained what he had done in the surgery. I was very grateful to understand what he’d done. I always want to understand things. Meant I was more aware of the damage I could have done though. OOhh no, I felt pretty embarrassed.

While we were talking I heard the words, “I don’t want to become a fat, floppy old lady,” come out of my mouth. Where did that come from?? I’ve never expressed that thought before. Obviously maintaining a strong and fit body into older age is a really deep-seated desire for me.

Fortunately for me, my surgeon’s work was exceptional! My ability to make collagen – outstanding! Great combination.

Really …… What was I thinking?

What I do know is when you’re in the middle of something; things are not nearly as clear as they are if you’re on the outside looking on. I look back now (from the outside) and shake my head in disbelief at that decision.

My body seems to make a lot of collagen – scar tissue. I was also having some problems with my abdominal scar. I had keloid scarring and it was really tight as well. At times it was like a guitar string. Ha! It felt like it would twang if I strummed it.

My plastic surgeon gave me the name of a physiotherapist who specialises in working with cancer patients who have had surgery or reconstructive work. Often there is tight scarring associated with this work and she is amazing at helping release those scar problems. I continue to see her and we are seeing some very positive change in all my scar areas. Looks like things will improve over time. What a great thing to look forward to.

My girlfriend stayed for nearly two weeks and it was quite sad to see her go. She was great company and did a huge amount of work in the garden that I’m not yet able to manage. I’m so fortunate to have such wonderful friends.

I began to walk and swim on alternate days. I was walking close to 2km and worked my swimming up to about 200m. I also went back to the gentle exercises.

This is all a bit of a mental game. Self awareness is so important. For me, it’s not all just “OK this has happened and I’m managing and adapting just fine.” I am managing well and adapting, but there are times when I don’t feel so happy with what’s happened. I don’t know about other people who’ve had this surgery but I find that there are times that I feel quite low and a bit of self-pity can creep in. I do find the limitations quite challenging.

Negative thinking is insidious. It can start quite simply as something not going right, the focus changes to what else is not right, the things you don’t like, how hard it is and so it goes on. It’s like falling down into a rabbit warren and getting lost in the tunnels. Alice in Not so Wonderland!!  It can be hard to find the way out if you get down too deep. Fortunately, I can usually catch myself out doing this and get my focus in a much healthier place.

However, I got up one morning in a bit of a blue funk and said to Doug, “This isn’t fair. I’m not a bad person, I don’t deserve this.” His response gave me exactly what I needed.

He said, “That’s all true. But don’t let self-pity take over.”

That’s all he said. It made me sit up and take notice! I went and found something to do that kept my mind occupied and stopped focusing on the things I couldn’t change. What a man!

Sometimes a girlfriend and I use our music knowledge when we’re talking. We will use a line from a song in our conversation. It’s fun and we can come up with different song lines in response to each other. Good for a laugh.

Here’s some of my thoughts of late:

Six months in a leaky boat[1]

Time goes by so slowly and time can do so much[2]

Stayin Alive[3]

And I go back to black[4]

I Will Survive[5]

So life goes on, despite all my little dramas. I’ve been working on something for a bit of fun. After all, what is life without a bit of fun? So next post I’ll share something different with you…. Just for fun!

Nanette xx

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[1] Six Months in a Leaky Boat Split Enz

[2] Unchained Melody The Righteous Brothers

[3] Stayin’ Alive The Bee Gees

[4] Back to Black Amy Winehouse

[5] I Will Survive Diana Ross