My Happy Little Life … Interrupted

I had always believed that only a particular kind of person can have cancer. I don’t know at all what this ‘kind’ of person is, but I just knew it wasn’t ever going to be me. My grandad’s have both beat cancer without too intensive treatment, but besides this, it has never been a part of my life. I assumed there were reasons for cancer, maybe it’s hereditary or maybe people’s lifestyles could result in cancer. I never thought it would happen to me, someone so ordinary.  How r a n d o m.

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days before diagnosis

Welcome to my oopsydaisy! I was pretty hesitant about starting a blog as I’m such a private person, I wasn’t really sure if I wanted anyone to know what was happening in my life. Most people don’t really understand and have absolutely no idea what I am coping with and experiencing every day, but how would they if I never tell them? On my blog I will talk about my diagnosis, chemotherapy and its gruelling side effects, hair and eyelash loss, life with cancer and so much more.
Life has changed completely for me, nothing is like it used to be. I have always been a lover of life and so appreciative of everything I have in life, and never saw anything like this coming. I had been continually complaining of back pain, I’ve never had problems with my back so I started by ignoring it hoping it would get better, I had a sports massage (ouch) which didn’t help in the slightest. I couldn’t even lift the kettle without an excruciating pain in my back.

Eventually I went to the doctors and he sent me for an MRI within days of seeing him. At the time I thought that was quite dramatic and that I probably just needed physio. The most traumatic part of this MRI is that I had to go and have my hair extensions removed prior, as they are metal at the root and an MRI scanner is basically a giant magnet. The MRI was taken of the bottom of my spine, and then I left the hospital and went to work.

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sent home on morphine

Results of an MRI usually take a couple of weeks. That same week I had a gazillion blood tests (I’m surprised I didn’t run out of blood), and this is when I first realised there was a possibility it could be cancer. I had not even considered this, but I was reading my bloods form and ‘melanoma’ along with a few others was on the list. I then had the long-awaited call back from my doctor. I hadn’t been as patient as it sounds, I had been ringing him nearly every day to see if he had the results, I was terrified there was something he wasn’t telling me. He was concerned about a curve at the bottom of my spine, so he arranged an appointment with a Spine Specialist at Leicester Royal Infirmary.

Mum, dad and I went up to LRI to meet the Doctor. He had me do some typical stretches and exercises for my spine, and expressed that the curvature was a few degrees shorter than what was classed as an issue. The only thing that concerned him was some shading along my spine, but it wasn’t his area of expertise so he wasn’t totally sure what it indicated. He requested I had a full spinal MRI and referred my case over to another Doctor, who was a haematologist.

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Hev and I on the train to LRI

The next week, Heather and I went all the way to Leicester, she spent two hours in the waiting room whilst I was in the MRI machine… they had said it would take 45 minutes. That made me think something was wrong. If you haven’t had an MRI before, you basically lay on a flat, solid board, in my case they had to cage my head up to keep it still. You’re then wheeled backwards into a tube that is no wider than what felt like a lilo, and your nose is almost touching the roof of it, both ends are open though and they give you a button in case you need to talk to them. A worst nightmare for a claustrophobic (luckily not me!) and you have to stay completely still. They usually play music for you through ear defenders, but in my case they wouldn’t fit under the box my head was stuck in, so I had the pleasure of hearing every movement of the machine, which basically sounded like roadworks and drilling.

The next morning (which is worrying in itself) the specialist rang. Weirdly it was my mum’s day off and I had last minute decided not to go to work, so we were both at home together. He asked to speak to my mum first, and I sat and watched her smiles turn to shock and she was trying not to cry, but failing very badly. She hung up the phone and explained that he was really concerned it was cancer, not a spine problem. We both started to cry and then made the decision to ring my dad. The specialist had arranged an appointment with the haematologist (blood specialist) at LRI for the next day.

That next day, I was diagnosed with the dreaded C word. The doctors weren’t sure straight away which type of cancer I had, isn’t that weird? They knew it was definitely cancer because they could see it on all my scans, but they didn’t know what type??? They first thought it was lymphoma, but the consultants eventually confirmed that the cancer was in my soft tissue… like what… I didn’t even know I had soft tissue. This is where it gets complicated. My type of cancer is Sarcoma (soft tissue), and the rare sub-type of Sarcoma is called “alveolar rhabdomyosarcoma.” This type of cancer is so rare; it only makes up 1% of all cancers… how did they even find it?! I was admitted to Ward 27 at LRI and totally unprepared for the next few months.

daisy x x

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  1. Fiona
    December 6, 2017 / 11:50 am

    Hi Daisy. We’re all in the Grande Finale just now. Your friends have just announced the total so far -£1483!!!! Everyone is chipping in- looks like Rob and I are going to Ocean 😳. Yr3 have done you proud. Take care and look after yourself. Much love Fiona xx

  2. Kynaat
    December 6, 2017 / 11:56 am

    Hey daisy,
    thoughts are with you … we are all in the grand finale room right now and the year three’s have done an amazing job raising money in different ways ! Stay strong….. this is a test for you and you’ll pass it !! You say you appreciate life ….that’s amazing ! Just carry on a little further and there will be ease !! Your in all our thoughts !! Xxx

  3. December 6, 2017 / 2:54 pm

    I hope you keep writing and documenting your story. Sending prayers your way

  4. December 6, 2017 / 4:12 pm

    I can’t begin to understand what you’re going through, but please keep blogging. I love reading your journey and hopefully you’ll be able to read back on this in years to come!
    My niece was diagnosed with leukaemia at the age of 3 and now 7( going on 17) I understand a little the life change!
    Xxx

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