Out for breakfast to celebrate

Woohoo! I’m a year past my surgery (plus a bit). What an interesting and challenging year it’s been. It’s been a lengthy recovery but more recently there have been a few firsts since my surgery that make me realise that life is getting back to normal. I’ve also had a bit of a reminder of what I’ve had done and the ongoing changes that I have to be aware of.

In the last little while, I arranged to meet a girlfriend in Noosa for a short getaway. I was driving down and realised something felt quite strange… I was going away by myself. I drive all around town doing jobs but when we go to Brisbane, Doug or a friend comes and does the driving. Well, I’d decided I could manage the 2.5-hour drive with a couple of stops to rest along the way. It felt really strange being by myself in the car after a year of always having Doug or a friend with me.

We had a great time in Noosa – Talks, walks, food and a glass of wine. We always have such interesting and stimulating conversations. I have some lovely friends.

I’ve also been to the movies. Not a big deal? Well when you can’t sit for long periods the movies are out. It was great. I went with a couple of girlfriends to see the sing-along version of Grease. We all sang out the songs we knew. What a blast from the past!

                 Ready for breakfast.

Doug and I also had a mini break in Noosa. We are getting close to putting our home on the market and spent three nights in a delightful B&B, Noosa Valley Manor. We enjoyed the time looking around at places we might like to move to.

I had a lovely surprise recently when another woman, who has had the same surgery as me, made contact. We organised to meet while I was down in Brisbane for my check-ups. What a great time we had. We talked together for a couple of hours sharing our stories, experiences, and tips and laughing together. She’s a gorgeous lady and it was really special to meet someone who’s also had the surgery and really understands what it’s all about. We’re going to keep in touch and I think we both find it’s a great support to have someone who really understands the changes and challenges we face.

The ongoing part of having had cancer is the regular check-ups. I went to Brisbane and had a raft of tests, scans and procedures as well as seeing all my specialists. Well I sailed through my 12-month check up. I got a great report. Everything was fine and my oncologist said to me the only abnormality was that all my bloods were within the normal range. Ha! What a lovely abnormality lol!

My plastic surgeon gave me the go ahead and increase my activity to anything I felt able to do. I think he was a bit surprised when he saw the flap. The contracture in the flap continues to cause me considerable challenges. It’s difficult to give him an accurate idea of what I’m experiencing. He brainstormed a number of different surgical options….. he didn’t seem to really like any of them and to be perfectly honest, neither did I. The irony was, he suggested that it might have happened because my muscle was accustomed to working hard and when it couldn’t, it contracted. That’s just disappointing.

Ultimately, he said that I had experienced a major cancer, major surgery and this might be the way it is. Hmmm, I really don’t know what to think.

Despite doing daily stretching and flexibility exercises, weekly therapy, as well as massage several times a day for months, the contracture has continued to tighten. I had been wondering if I could manage this for the rest of my life? I had been feeling quite despondent and not very hopeful. It felt a bit cruel and unusual. Some days were uncomfortable and others very uncomfortable.

When I saw my colorectal surgeon, I described this time as having been “pretty gritty”. He listened to me and suggested keeping a daily journal of how it felt so I would be more aware of any changes. What a good idea. Why didn’t I think of that?

After I left my appointment, I had a think about what more could I do to help myself. I needed to rebuild muscle and develop my muscle tone to give my body support.

So a plan was made. Time for me to get gritty back!! Pilates, exercise physiologist appointment, continue walking, purchase a Sanakey device to help manage the scarring and contracture discomfort and start restorative yoga.

                             Pilates exercises

My exercise physiologist and pilates instructor  worked out a supervised program for me and I go twice weekly. I also found a restorative yoga class online as there was nothing available locally. I do this a couple of times a week. Here’s the link – it’s a 45 minute class and I really enjoy it.

https://www.youtube.com/watch?v=NhCRvb9498A&list=WL&t=0s&index=7

I haven’t been swimming for a while. It gets quite windy this time of year where I live and I’m not crazy about being slapped in the face with a choppy wave. Recently I was told about a group who swim together at 5.30am on a Friday. I’ve decided I might join them. I must be nuts!!

I’ve also started playing tennis again. Well, I hit the ball and my partner does the running. I’ve improved enough to do a sort of tiptoe across the court. It’s great to be back having a hit.

Will I get back on the bike? I’m not sure yet. I was told I could, but wonder if I’ll regret it? While I’m having such challenges with internal tension in the flap, it may cause me more grief than it’s worth.

It’s like a full time job. I’m really busy in the mornings when I do my exercises and stretches and then go for a walk.

     Ready for a walk

I also do some meditation and visualisation. Anything that may help.

Apart from those physical challenges, I’m managing really well. I have systems and routines worked out to manage the stomas and overall it’s fine. I told my surgeon, “ If it wasn’t for the flap I’d be flying.” I wouldn’t choose to have this happen but it has and I can live with managing it.

The good thing is I haven’t had to manage an obstruction since January. I must have become a little too relaxed recently as I ate some nuts without really thinking about it. I woke in the middle of the night with gut pain. I had forgotten about obstructions! I woke thinking I had eaten something that upset me. Well yes I had, but my gut was really unhappy. It took 36 hours for it to clear. I massaged my tummy a lot. The next day I had a warm bath and increased my fluids. I didn’t become nauseous but it still hadn’t cleared the next day. After speaking to the stomal therapist at the hospital, I increased my fluids even more and took a long walk. Eureka! It cleared it. Thank goodness there was no trip to hospital with a nasogastric tube.

I don’t think I can eat nuts.

Two weeks later, I woke again in the middle of the night with abdominal pain. Oh no! I was driving to Brisbane the next morning. No, I hadn’t eaten any nuts :(. Fortunately it wasn’t too severe and I drank lots and lots of water on the way down (and had lots of stops lol). When I got to Brisbane I went for a long walk and it cleared it. Whew!

A timely reminder for me about drinking plenty after eating a meal and also that I have to always be aware of what I’m eating and chew, chew, chew. Got to keep that in mind!

From the time I started this post to today, there have been some changes. The contracture in my flap has tightened considerably despite all efforts to keep it stretched and flexible. It feels like it happened almost overnight. I’ve been keeping a journal but didn’t really need it to know there have been significant changes.  It’s most uncomfortable – at times it feels like I’m being split in two. I’ve ceased all activity because it’s so uncomfortable and to prevent aggravating the contracture even more. I’m off to see my plastic surgeon again and see what he suggests.

I’ll let you know.

Nanette xx