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Three months on and, have you noticed, I’ve been very quiet? In my last post I said that I wouldn’t be talking about the flap anymore. Well, that’s why I’ve been so quiet. Really, there’s been little else to think or talk about. Despite my stern words with my flap, things have continued to tighten and life has contracted accordingly. But I have so much to tell you.

I was going to do a post about managing chronic pain or discomfort. My perspective of course, was always from a psychological one but my physio gave me a link to a very good little YouTube video that you might find useful. There are some great strategies discussed.

The reality is that you can’t have major surgery without some lasting effects to the body. Some people experience loss of function, others loss of sensation and some have ongoing problems with chronic pain or discomfort. My experience has meant discomfort that has unfortunately increased with time. My problem, apparently, is not something they’ve seen other people experience. Just bad luck really. However, other people do have their own challenges.

The things I have found most useful have been to distract myself from the discomfort, use appropriate pain relief, rest as required and limit any activity that increases my discomfort. I also do some relaxation so there isn’t a tendency to increase tension in my body.

Over the last three months, the changes to my flap have meant a gradual reduction in all activity to the point where I no longer “do” anything. I found my physio exercises were increasing the problem; I stopped swimming as things became more aggravated, tennis didn’t help and also no more minutes on the bike. Walking has reduced to a stroll down to the gate a couple of times a day. This wasn’t good.

So difficult to accept and continue to feel OK. I started binge-watching Netflix!!! It stopped me thinking about living a life like this. I was very aware that I was feeling a bit low, pissed off, frustrated and just plain sad. I really had lost my sense of hope. After all, I’d been told there was no solution available. I was entitled to have those feelings……This was so unlike me. I’d look at myself and shake my head… then reach for the Netflix control again… “I think I’ll watch The Good Wife today.” I love the fashion :). And, of course, music has played a big part too.

I really think I have been grieving for the losses I had to live with. I knew I wouldn’t stay in that mental space forever but I wasn’t ready to leave it yet.

I’ll have to work out how to live like this. There are many people who live with the loss of ability to move or do physical activities. I just wish it wasn’t so uncomfortable.

In February, an opportunity to take my mind in another direction had presented itself. I was invited to give the International Women’s Day talk at the local Zonta Breakfast this year. I spent quite a bit of time writing, polishing and practising my talk. Yes, I was a bit nervous on the day and had a small surge of emotion but overall I was very pleased and the talk was extremely well received. It was a really good distraction. Here’s a link if you’re interested in having a look.

Challenges & Chocolate

If life ever becomes easier I think I’d like to do more of this.

I also had another bowel obstruction in late January…. I always pick special days – it was Australia Day… well at least I got the Pavlova mixed up before things became messy :). Doug had to assemble it – his cooking skills are increasing all the time. Things resolved fairly quickly and I was out of hospital in three days. Yes I had the dreaded NasoGastric tube again – Yuk!

A trip to Brisbane to see my Gynae-Oncologist in March gave me a good report. Hurray!! At least all is well on that front. He also encouraged me to go back to my plastic surgeon. So another appointment was made. The consequences of that trip meant a further increase in tightness. WOW! What is going on??

While I was in Brisbane, I took the opportunity to visit the staff in my surgeon’s rooms. They are such a special group of ladies and I always enjoy seeing them. We had a lovely chat and a laugh. It sounds like nothing’s wrong doesn’t it. But I’m very good at keeping things “invisible”.

And to be honest I’ve become pretty invisible. Over the last two months, I started to feel the need to lie down about 2pm, then not so long after, it became midday, then about midmorning. It helps to manage the pressure in the flap. I didn’t want to see anyone or go anywhere. My life had really contracted. After this trip to Brisbane I was spending as little time as possible up and around and doing activities.

Our trip to the Kimberley was getting closer and closer. I was really starting to wonder if I would be able to manage if we went.

My next trip to Brisbane was to return to see my plastic surgeon. I think it must be difficult for him. I keep turning up and saying there’s a problem but, as it’s not really visible on the outside of my body, it must be difficult for him to know what’s going on. Anyway the news is that he can see how much discomfort I’m in and there is a solution. A reconstruction is planned.

What a relief! And how scary!

Fronting up for more surgery isn’t something I ever wanted to do. I find myself gathering the threads of my courage around me to give myself a cloak of armour ready to face what comes next. I have no illusions and I may have healing challenges again. I’m feeling a little weary. I’ve put such a lot of effort in to how to best help myself but unfortunately my body had other plans. But I know that I’ll face whatever comes next as best I can.

Once again, there was an increase in discomfort following this last trip to Brisbane and this has meant I have to face reality. There’s no way I can manage this Kimberley trip. We put the word out to all our network of friends and we’re very fortunate that someone has picked up the trip. Whew! It would be a lot of money to lose if they hadn’t. We’ll postpone for 12 months. It hasn’t gone away …..we’ll just go later on.

The other thing that’s happening is we’ve put our lovely old home on the market so we can move closer to family and Brisbane. There’s a lot going on.

For Sale

So, I’m now waiting for the phone call that tells me when my surgery is planned. My next post will be after I’ve had it. Fingers crossed I’ll have a really good outcome. I know I’m in good hands.

Nanette xx

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