“I now have tumours Mum…”

The doctors always predicted the bone tumours might come around the five year mark. I am not that far off this anniversary. But when I received the MRI report last month, I was dumbfounded. I had to read it several times. Could it be? Really? Now?

How was I going to share this with my mother after she’d only just cremated my dad five months ago?

I carried this news around with me for 2 solid weeks before I told her. The weight of it bearing down on me, trying to carry on as normal while knowing things are going to get worse, so much worse. Feeling sick to my stomach and scared.

The tears fell as we spoke via video call. I haven’t hugged her for nearly 3 and a half years. Mum’s face changed when I told her, and in that moment I saw the pain I caused her. There was an overwhelming sadness that washed over her because she’s unable to protect me, like any mother would want to.

“How will I know when I have bone tumour pain?” I naively asked the oncologist/haematologist five years ago.

“The pain will be unlike anything you will ever experience Asha, you will know.”, he said matter of factly.

Multiple Myeloma is the cancer that just keeps taking. It robs you of your haemoglobin and white cells first, causes immense fatigue and brain fog, depression and dizziness, not to mention aches and pains from lack of O2 in the body. It weakens your immune system. Next comes the tumours. I have them in different places in my spine, pubic bone, sacrum and in one of my legs. When they get worse, renal failure will follow.

There were 1200 images taken from the full body MRI scan. A procedure that lasted 4 hours at Chiang Mai Ram in Thailand. My last experience was in London in 2017, but that was only an hour. Over here the machine is not set up for a whole body scan, so it has to be done in parts.

There I lay, in a confined space, with a plastic cage over my head and my body weighted down, unable to move. The ceiling of the machine inches from my faces, sponge ear plugs in that did nothing to stop the cacophony that the machine makes. And my heart racing despite trying to stay calm. I was traumatized from being in that tunnel the whole day and I went home alone and cried all night.

On Monday last week around 9pm, just before bed, the pain came like a tidal wave and hit me without warning. I thought I was having a heart attack. Thank god my friend from Cambodia had flown over to be with me. I have no idea what I would have done without her. I am eternally grateful!!!!

The tumours cause pain by pressing and squeezing organs and nerve endings. It started in my left pectoral, went down into my left ribs and into my upper abdomen. I felt like someone was standing on my chest and sticking a knife deep into me, the sharp pain was so excruciating I couldn’t breathe. I couldn’t stand, or lie down and I could barely sit. I kept saying, “If I collapse, take me to Chiang Mai Ram, this is my credit card,”.

For now the pain can be managed with a very high doseage of anti inflammatories or later down the line, nerve blockers, or possible injections to the spine. I am not at that stage yet, and it has only happened once. But for a whole week my entire body feels like I have been smashed up with a baseball bat. Everything hurts especially where the pain was. It feels like internal trauma. I really hope the pain doesnt come back soon.

I have been reading a lot that tumour pain come at night. But why?Turns out the body’s cortisol level drops at night and this usually acts as a natural anti inflammatory.

So I have decided I need to raise my heart rate and stimulate my sympathetic nervous system to encourage cortisol production. This is why during the day I have not felt any pain because I am always walking and doing dynamic yoga. So now I have changed my walking pattern to evenings to try to raise the cortisol level before bedtime. Even when exhausted I push myself out the door. The pain is so terrifying it is enough to encourage me to walk.

I am not having chemo or stem cell therapy. I have read about other medicines. But with complex rare cancers, you never take just one drug is it always a cocktail of things to off set the side effects of something else.

I am not interested in being pumped full of drugs or spending my life in hospital. I don’t care how short it is. I want to live not to eek out survival.

This is a choice I have made based on reading and speaking to real people who live with my disease in different stages and what has happened to them. And they are all different.

I do not want advice from people, so please don’t message me with ideas about trying this and that. It is exhausting living like this. It is just me fighting my corner everyday. And the mental pressure to get up and make the most of everyday is so fucking hard, you can’t even begin to imagine what it is like going through this as a single person.

I have made my health my full time career. And it uses every ounce of my energy. I feed my body with 30 different ingredients every single day for the last 3 years. My doctor tells me my diet has boosted my natural immunity and has slowed down the progression of cancer in my blood for someone at my stage. I exercise daily despite the pain and depression and generally wanting to give up. But like a flipping machine, I keep going.

But what I do need, more than ever before, is more moral support. And this comes in the form of love, hugs and meeting people and doing fun things.

My patience for seeing people who want to “slot” me in when they are looking at their options, is wearing thin. If you don’t genuinely want to see me then don’t insult me by fitting me in. Make the time when you have the time, or don’t. I really don’t care anymore.

I have no idea how fast these tumours will grow. Bone cancer is not curable. But I will keep going, doing it my way….putting one foot in front of the other, and taking one day at a time.

Mum flies over this week. I am heading down to Bangkok to collect her. It is going to be a very emotional reunion on many, many levels.