Life in limbo, again

I wrote this a few days ago mid meltdown (see my post over on facebook to hear all about it!)

In December 2014, 12 months after being diagnosed with Stage 4 Melanoma, a terminal prognosis, I wrote about my struggle with living life in limbo. I had gone from meeting with palliative care in January 2014 and planning my death, to December when I was responding to treatment and feeling well. Yes, I still had terminal cancer, but I was faced with the potential of this new immunotherapy treatment extending my life by years.

My husband and I had spent months ‘living in the moment’. Serge stopped working to spend as much time as possible with me. We got married. We went on holidays together. We just enjoyed our time together as much as we possibly could.

Eventually, ‘living in the moment’ became too difficult. Every time we did something fun I was reminded of my reality. Life became tiring.

Nobody knew how long I was going to respond to treatment. We couldn’t keep on going like this. We couldn’t live life like I was going to die tomorrow, next week, next month or even next year.

Serge and I craved normality.

We made big decisions that would allow this. Serge returned to work. I started working one day a week at a gift shop. We bought a puppy. And we made the huge decision to buy our first home.

All the decisions were still made with a great amount of consideration knowing that at some point I wouldn’t be there and Serge would be left with the responsibility. As much as we hesitated, these decisions were right for us and gave me the strength to live life.

We still made time to travel and enjoy life, but living this normal life lifted me from a deep depression and gave me the strength to just be me. Just Emma. Not Emma with terminal cancer.

Over the last few weeks, I have found myself back at the beginning.

In the recent months my health has not been great. I stopped responding to treatment in December and since then I have changed treatments three times and had two cycles of radiation. We hoped the radiation would work and I could continue on Keytruda, but this did not help. Nothing was stopping my lesions from growing.

As the lesions grow, I am physically feeling the impact of my cancer. I am in a significant amount of pain and relying on strong painkillers to keep this under control. Thankfully in the last fortnight we have found the right balance of painkillers and I am feeling much better. And, more worrying to myself, my ability to cope emotionally with terminal cancer has taken a big hit.

I am finding myself crying throughout the day and struggling to cope in social situations. I am starting to think that I don’t have much time. I am back to basing the smallest to largest decisions on my health.

Unfortunately, a lot of this surrounds making suitable financial decisions so that Serge and I have the money to enjoy our last months or weeks when I am told there are no more options. And most, importantly, making sure that I do not leave Serge with unnecessary debt and a small safety net.

I can’t go shopping for clothes without wondering if spending that extra money is worth it if I am possibly only going to be here another season to wear it. Sounds pretty ridiculous, doesn’t it?

It is heartbreaking that I find myself second-guessing our decision to buy our home. Although we sat and worked out if Serge would cope with mortgage repayments without me, it will be a massive stress on him. But I can’t forget what this home means to us.

It is OUR home that we have made our own. Mainly me putting up a thousand pictures of us (I joke that I am going to super glue them to the wall so he forever has a shrine of me… sucks to be future partners! There goes my sick sense of humour again). It is where we laugh together, and argue. It is where I sit on the couch and look forward to him walking through the door after work. It is where Ralphy goes between following one of us around at all times. It is where I text him from the next room just to say ‘I love you’ followed by ‘don’t forget to take Ralph to the toilet’. It represents our hope that I will be around for a little while yet.

Now to our kitchen, the heart the home.

As many of you would be aware there has been a lot of exciting talk of our kitchen. Here is the rundown if you have missed it.

My dream was to renovate our kitchen, this was mainly due to the fact it didn’t have a dishwasher and parts of the kitchen aren’t legal height. I had met with a wonderful cabinet maker and we made our plans, but a fortnight ago I had to email him and tell him that because of my recent pathology results that we just can’t spend money on a kitchen – something that was a want, not a need. This broke my heart because it was something I looked forward to planning and having a kitchen (with a dish washer!) that I had hoped to enjoy for a little while longer.

I am so lucky that two dear friends Emily Jade O’Keeffe and Rebecca Sparrow came to my rescue and set up a Go Fund Me page to make sure that my kitchen dreams weren’t put on hold because of stupid cancer.

From the bottom of my heart, I thank every one of the 505 people for donating and allowing Serge and I to have our new kitchen.

We reached our target of $10 000 very quickly, but after a few comments from readers, the decision was made to keep the page open a few days longer to raise some money to go into a little fund for Serge and I to use for holidays and adventures together.

This kitchen will be a wonderful distraction to how I am feeling at the moment. It will give me something to look forward to.

I hate the pressure to live in the moment and make decisions based on how long I have left. I hope I can return, once again, to the point where we are comfortable planning months in advance.

If you would like to add to the Go Fund Me Page you can donate here. The link will close on Sunday 5pm.