Beginning to rebuild

The enormity of what is happening in our lives is beginning to sink in.

2 years ago we decided to start preparing our house to be comfortable and functional as we got older and with my health issues, so we had our kitchen remodeled with drawers that were easy to access to minimize bending.

For those who don’t know, I have sever osteoarthritis in my spine and fibromyalgia, so Colin has been caring for me for quite a while now.

12 mths ago we invested in a spa to see if that would help my pain levels and it was amazing, for the first time in 26 years I had some pain relief. I would spend time in here every day.

My health continued to determinate last year and after many specialists visits they realized I had a lot of food allergies that had never been picked up, so I was put on a very restricted diet.

My pain levels halved and I was able to come off Oxycontin and go back to 200mg of Tramal a day.

For the first time in years I was able to do more than one thing a day. I finally felt like I was getting my life back.

Then just as we were enjoying this we learned of Colin’s cancer and I felt devastated, my world was just starting to expand and his was beginning to contract. He has been my rock and my safe harbor, the thought of him not being here was terrifying.

It seemed so unfair, but we tried to trust that somehow things would work out and then our house burnt down.

We couldn’t believe it. All our memories, our times together and so much more all gone.

The house was the one Colin lived in as a young adult and then his Mum lived in and we brought it off her when she got dementia and had to go into care and for the last 8 years it has been our home.

We have been helped and supported by family,friends and total strangers and it has been amazing to see everyone getting behind us.

We had always given to help others in need, but we had no idea what it was like to loose everything in a fire. The first night all we had was the clothes we were standing in. Friends took us in and lent me a nightly and Colin some clothes. Someone took me to the shop so I could buy some food that I could eat as I needed gluten free food that contained nothing I was allergic too.

The next day we were offered temporary housing in a furnished house and we were so grateful, but when we got there we realized we didn’t have toilet paper, tissues, soap, washing powder, dishwashing liquid, food etc, so we stayed another night with friends and people rallied around with some stuff to get us started.

We went to the shop and brought some notebooks and pens to start writing down what we had to do, we brought some sticky tape, envelopes, knickers, a comb and brush, toothbrushes and toothpaste and my special soap, just the things that were most essential. The bill was $165 and that was from the reject shop, so the cheapest in town.

We realized then that although we had insurance for the house and contents insurance, the contents insurance wasn’t going to come close to covering what we had lost. Whatever contents insurance you have double it.

Like everyone we had some things we wouldn’t need to replace as they were things we no longer needed, but this was still going to be an expensive time.

People all got together and some money was raised and lots of gifts were given and this helped us feel that somehow we would get through this.

It wasn’t until mid way through the following week that we started to realize the impact this would have. Colin was to start treatment, which was just to help him get through, not a cure and could make him very sick and he wouldn’t be in a comfortable familiar environment for that. His home was part of his sence of security and something that had been a constant in his life.

All the time and thought and money that had gone into making the house as easy for me as possible and all the pain management devices and choices we had made were gone.

The stress also added to my pain levels, but there was no spa to help alleviate the pain. The bed was not our bed that had been got especially for me as I am allergic to latex and a lot of beds have latex in them, so I was having flare ups form that too.

I am a photographer and work for digital-photo-secrets part time as that is all my health will allow and now my computer and my cameras were gone. My art weork was all destroywes and special peices I had done for Colin, gone. All the lovely gifts we had given each other over the years and the gifts others had given us, all gone.

My computer had been made to enable me to work quickly and efficiently and I had a special chair to support my back.

I had no choice but to ask for a month off as I couldn’t work without the tools to do it. My camera was insured, but when I went to order a new one, that model is no longer available so I need to research what is available so that I get the right one, something else that needs time and a clear head, neither of which I have at the moment.

We were finding this in so many things that we enquired about. I had Kalso Earth Shoes, again to help with the pain and these were all gone.

I went to order more and the shop had closed down.

I managed to get a sneaker but had to get it delivered to America and then forwarded on to me as they don’t deliver to Australia.

The Kalso earth thongs or flip flops I have not been able to get in my size so again don’t have these aids to support me….the list goes on and on.

Everyday we remember more things we have lost….

We have each other for now and are holding on to that but it is so frustrating, we had just got to a good place physically and had prepared for the future the best we knew how and now it was gone and we had to start over again.

We don’t understand why this is happening but the only thing we can rest in is that, “God works everything together for good to those who love him.” So we are believing this and holding on to it, and that his plans for us are for good and not for evil.

How will we get through the next twelve moths, we do not know, but all we can do is take one day at a time, one step at a time and pray for strength and comfort and trust that somehow it will work out.

Hope

Rising from the flames

Fire

Well my plan had been to walk you through our journey with Cancer, and I stillness plan to do that, but things got a lilltle complicated on Saturday when our house burnt down.

We have lost everything including my camera and computer. We do have insurance but of course that all takes time so in the meantime I am using my phone to write this.

Colin & I were out at the time and the dogs were not at home so the most important things, us and the fur babies are safe.

Here are some pictures

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Continue reading

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……