Missing in Action

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I think that describes how I feel, it is like my life has been ripped out from under me and I have been transported to a new house and a new life. A life that revolves around cancer.

My husband has a rare form of Leukemia which there is no cure for, but, they give you chemo in the hope that it will prolong your life….but at what cost…. every 28 days we start anew chemo round of two injections every day for 7 days, his stomach becomes red, bruised, too sore to touch and his appetite has gone, food has no taste and this is just the start…..then on top of that 2 chemo tablets a day, after the chemo injections he is so tired that he sleeps most of the time, he is fatigued and I watch him fade before my eyes.

So far the last two months we have then gone in for him to have blood transfusions, then he picks up, just starts to feel better and wham we start all over again……how long for… forever….this is our life from now until he dies……we are hoping and praying that after the first 6 months he may pick up a bit and have a little quality of life….we hope so.

I treasure every moment that he is a part of my life and I am so grateful that I have him in my life in whatever form that is so for this reason alone the treatment is worthwhile. If he was in pain and suffering more then I wouldn’t want that, but for now we can continue on and hope that the treatment is going to help. He is strong and isn’t ready to give up so that is promising. We appreciate all your thoughts and prayers at this time.

How do we go on….we take each day as it comes. On good days we enjoy the things we can do, on bad days we just focus on getting through. We make the most of the moments we get to share and try not to look too far into the future. We have some wonderful friends who are walking this journey with us whether they are here physically or just in spirit, you know who you are –  thank you so much, you are giving us the strength to get through this. Also God is a big part of us getting through, it is our trust in him that keeps us believing that whatever the outcome everything will work out as it is meant to, we don’t have to have the answers or be in control, we can let go and let God.

I am still out taking photos, I struggle to process them but I am continuing to try to create some digital art, even if it is to help me find some joy within this bleak landscape that has become our lives.

I have a peace that everything will work out, somehow, someway and it is this that keeps me going. So sorry there have not been many updates but as we adjust to this life I am sure I will be able to bring you more art and photography, tips and hopefully words of wisdom.

The tip for today is just to use your phone if you don’t have your camera and get lost in the moment and create some beautiful images. Try to pick a bouquet of joy each day,a Buddhist saying is, life has 10,000 sufferings and 10,000 joys, the sufferings seem to find us, but we have to look for the joys.

Would love to know which of the Remarkable rocks image you like best and any other comments you wish to make.

remarkable rocks, Kangaroo Island

cradled by nature


Protected, even in the wild

cradles in natures embrace

reading at remarkable rocks

Light in the Darkness

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My theme for my photography is Healing Art so although I feel so sad and shattered at the moment I wanted to use this blog to share our journey with you.

I am hoping that as I do this I will bring healing to my own life as well as to yours.

My beautiful, loving, caring husband of 23 years who has been  my rock and my support has been diagnossed with CMML2, chronic myelomonocytic leukemia 2. It is a rare form of leukemia for which there is no cure.

Let me give you a bit of a peek into the past.

Six years ago he was diagnosed with MDS, myelodysplastic syndrome, which also there is no cure for. They gave him between 6 mths and 5 years unless it turned to leukemia and then they could treat it, so at the time our one hope was that he would eventually get the leukemia with the hope that that could be treated.

When we got this initial diagnosis we went out and brought a second hand caravan and four wheel drive and hit the road, traveling around the northwest of Western Australia and the Northern Territory for four months.

Colin was a long distance truck driver who pulled triple road trains from Perth to the North West every week, so it was familiar territory, but territory he had always wanted to explore, instead of just passing through. His dream had always been to travel around Australia by road, so I was determined to make that happen.

Kenworth 1web






When we got back they realized he would have at least a few more years and I have fibromyalgia and osteoarthritis and had had a lot of difficulty in the caravan and 4WD, so we decided to sell our investment property, pay off our other house and buy a Motorhome so that I could keep traveling and Colin could realize his dream.

We found a Mitsubishi Bus that had been converted to a Motorhome, we called her Rosie and our adventures began.

Camp at dawn

Dawn over The Bus







Most people who get leukemia from MDS get CML or chronic myeloid leukemia and this can be managed with chemo tablets and enables you to have a much longer life expectancy.

So if this is the case why are we so shell shocked and devastated?

Two years ago Colin ended up in hospital with blood poisoning and his platelets were down to 30. I realized that at the current rate we only had a year tops, so I started to try to prepare myself, we spent the next year at home and then we put Rosie on the market, but then what we thought was a miracle happened.

His blood results kept coming back each month better and better. The Dr said this couldn’t happen but didn’t give us any other indications. As his blood work continued to improve they moved him back to three monthly blood tests and said he had a reprieve.

We were so happy. As he continued to improve we took our Motorhome off the market and started planning our next trip.

Colin went for a regular check up with his Dr and as he had been doing so well I didn’t go with him.

When he came home he said, “the Dr is not happy with my specialist and wants a second opinion.”

I was shocked. “Why”, I asked, “we are really happy your bloods are great.”

Colin said the Dr just wanted another opinion, so we waited for them to ring with an appointment and it was for a months time. We weren’t concerned as we thought it was just routine.

When we visited the specialist I told her we didn’t even know why we were here as Colin was doing so well. She told us they thought he had leukemia.

We were floored, we thought he was cured. Once the shock wore off we thought about it and said, ok, well if this is what brought his bloods up and gave us longer together then this is a good thing and if it is CML which was what they suspected then that would be okay as we could still have a life.

We felt like we were on a seesaw, up one minute and down the next. The fear of the word cancer paralyzes you, yet at the same time we knew this could be a positive thing.

We asked if we could still go away and the specialist said we will do some more bloods and if they are stable yes, so we were confident all would be well, while still feeling stressed and tense, almost like holding our breath waiting for the results. We continued to prepare to go away.

Then came the phone call, you need to come to Perth tomorrow for a bone marrow biopsy, this was Tuesday, we were supposed to be leaving on Friday.

We went to Perth, Colin had the bone marrow biopsy and as the Dr knew we were planning going away, she took them to the lab herself and the next day went and read them and then at 12 o’clock rang us to say, yes it is leukemia, but it is chronic leukemia, so you can go away while we grow all the cells in the lab and run all the tests to determine the details, prognosis and treatment options and made us an apt for when we got back in two months.

We were excited that we could still go away and that it appeared that the MDS had turned to CML and we would be able to manage it.

At the same time we were devastated as we thought he had beaten it and the fear of the unknown was very present. We told friends and family and everyone was sad and yet reassuring as they told of others they knew who had CML and were living a full life and dying of other things later in life.

As the shock wore off we got on with our holiday and tried to keep our mind off it. Colin was quite angry, which was not an emotion I saw in him very often and he kept pushing me away and pushing me to spend time with others. When I confronted him on this he said, “well you need to learn to live without me, I’m not going to be here forever.”

I was so shocked. When we had got the MDS diagnosis Coin had been so positive and would not even consider that he wasn’t going to be here.

This was such a different attitude. I said, “Bugger that, I will face being on my own when the time comes but don’t rob me of the time we have left.”

This was a turning point as we started communicating again and he allowed me to get close.

We got back home and by the time we went to the specialist appointment we felt that they would tell us it had all been a mistake as Colin had been so well…….how wrong we were……