Light in the Darkness

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……

 

 

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