Hi everyone. My name is Gem and my friend suggested to me that I should write a blog so here goes!
I am 33 and a Mum to 4 beautiful children. I am also a fiancé to Glenn, who over the past years has been my absolute rock.
In 2013 I was a studying a degree in Mental Health Nursing which I loved, with an amazing future ahead of me. I had 3 small children who depended solely on me for everything. In the January after just a few first dates with Glenn, I found a lump on my neck. I booked into my GP straight away only to be told it was an inflamed lymph node and not to worry. Two weeks later it was still there so I went back. This happen 3 more times until I was taken seriously and was referred to a specialist. This was the beginning of 4 years of letters I couldn’t understand with medical jargon consuming the whole page. I would attend where and when told and not have a clue what to expect.
My first appointment was with a lady who said that it feels fine and will “probably” be nothing. I will never forget the uncaring nature of her voice, like I was holding her up and making her late for lunch. I explained to her that it was getting significantly bigger with time and was now pushing on my windpipe, making breathing hard at night. She reluctantly referred me again to another consultant and booked me in for a biopsy.
Biopsy day came quite quick as looking after 3 children and attending 35 hours of placement a week was consuming every waking hour and was just what i needed to take my mind of things.
At my next appointment I was told that my biopsy results came back negative and that they weren’t going to do anything more. I pleaded with the consultant saying the same as before, that it was getting bigger and getting in the way of breathing at night time. After a while he agreed for me to have a hemithyroidectomy, which is just removing half of the thyroid gland, the side where the lump was, but only for cosmetic reasons. If i hadn’t have pushed they were quite happy to let it be.
It took a few months to get an operation date through which by this time was scheduled for 29th July. Six whole months since I originally went to see my GP.
I was terrified on the morning of the operation. Glenn drove me to the hospital which was 45 minutes away. The longest 45 minutes of my whole life. I was checked in, given the sexy green stockings and told to wait for my name to be called. My operation lasted 10 hours and was a success. They managed to get it all and it hadn’t spread out side of the thyroid gland. I later found out the Glenn had sat in the same chair in the waiting room the whole time I was gone, just waiting for me. I will never begin to understand how scared he must have felt that day. But he stayed, for me.
At some point after the operation and after 3 lots of anti sickness drugs had kicked in I was told it didn’t look like cancer. I remember even writing a status on Facebook letting everyone know I was ok and that it was benign. Oh how wrong they were.
By now it was the summer holidays and I had missed so many days of placement with appointments etc, that I had to work 3 out of the 4 weeks of august to complete it. It meant not spending the summer with my children, but this was a sacrifice I was willing to take to better my future, our future.
Early September I received a letter in the post which was addressed to my GP from my consultant to confirm what they had found. The letter was filled with medical terms which I didn’t have a clue what they meant so I just briefly scanned over it, with the intention on filing it with the others. However, the second paragraph through up some familiar words. ‘Carcinoma’ and ‘tumour’ stuck out like a saw thumb, but even then I couldn’t work out if it meant I had it or didn’t have it!
My appintment seemed to take forever to arrive. Friday 13th September. Unlucky for some but for me, I never believed in superstition. I got called in, Glenn by my side keeping my mind busy with his silly jokes! We sat down and the consultant didn’t even look up. He proceeded to read my notes as if we weren’t even there. He finally looked up and it was like a horrible joke. He muttered the phrase ‘It was cancer…..’ as soon as I heard him say those words my eyes filled with tears. I instantly felt like I was going to be sick and my ears started ringing. I’ve read before out when people are diagnosed and hear the word Cancer they don’t hear anything beyond this point, but I didn’t realise it was such an intense physical pain. I thought I was going to pass out. Glenn was amazing, he stayed calm, listening to what was being said while at the same time reassuring me. I honestly would not have got through that day if he wasn’t there. When I finally composed myself the consultant looked at me and said “But it’s ok, it’s the good Cancer” I’m sorry, what?! Please tell me what part of what I have just heard and felt was good?? I couldn’t believe he thought that was a nice thing to say.
The next few weeks were a blur. I was numb. I completed my hours on placement which meant I passed my first year at uni. I didn’t feel proud, I couldn’t feel anything. I pretended I was ok to people around me because i could see they were worried for me. I had to be ok for my children. Three little beautiful innocent babies. I wouldn’t dare let myself think about the C word, I felt weak if I did and felt I was letting them down. Everyone kept telling me strong I was being and how brave I was. I didn’t feel worthy of being called brave. I had Cancer. Was it something I did? Was it something I ate? Am I being punished for something?
Two weeks went by and I had a phone call on a Friday evening saying I needed to go in for another operation, this time to take the other side out, leaving me with no Thyroid at all. The first thing I thought was ‘here we go again’. More childcare needed, more disruption, more time off uni. I just wanted to feel normal again. I was so sick of hospitals and doctors and bloody medical jargon filled letters.
This time the operation was closer to home where I had a private room. The operation itself was quicker only a couple of hours I think and again Glenn sat and waited outside. In all of this i never took the time to ask how he was. How was he coping with it all. The same month we got together was the same month it stated. Our whole relationship didnt know any different. Will he always think of me as a patient? Is he only stayed because he feels sorry for me? All i know is if it wasn’t for him, my best friend, ,my rock, i couldnt have done it. This time I took a while to come round. My blood pressure plummeted to 85/60 and it took 5 anti sickness medicines to stop me from being sick. I felt like I had been run over by a bus. But the Cancer had gone.
A few weeks later I met another consultant who told me about a clinical trial run by Cancer Research which I was eligible to enter if I wanted. It was to see if RAI iodine treatment made a difference to patients with Papillary Thyroid Cancer which is what I had. Without having to think I signed up and was put into groups. It turned out that my group was chosen to have the RAI treatment. This involves taking a pill which made me radioactive for a few weeks! The downside was I had to be in complete isolation. By this time it was late November. I was still at uni achieving great grades on my assignments and tests and Christmas was just round the corner. I was introduced to Karen, my trial nurse. Little did I know how much I would look forward to seeing her in the months/years to come. She was so understanding of the fact I had children and that I needed to be at home at Christmas time that she scheduled my in for the RAI in the January. A whole year after my journey had begun. Two weeks before i was due to go back in, I had to go on a special diet which contained low iodine which turned out to be in everything! (I did cheat on my Christmas dinner because I decided that that didn’t count 😂)
Christmas 2013 was the hardest time of my life. Way harder than the operations and being diagnosed. Uni has finished for the year, treatment was all on hold so there was nothing to occupy my mind. So I started to feel again. I have a fantastic relationship with my ex husband, the children’s father. I remember sitting one night, when the children were all in bed to wrap up their presents and I cried. I couldn’t stop. I text my ex husband and gave him instructions as to what to do next Christmas for the children if I wasn’t here. We use a different colour wrapping paper for each child so they know who’s is whose. We put the tree lights on before they wake up, so they go downstairs and see the presents lit up underneath. It was the most painful conversation I have ever had. The thought of my children growing up without me, forgetting about me. It was unbarable. I sobbed and sobbed the whole night. I felt guilt, anger, sadness and I suppose grief. I grieved for the person I was exactly a year before. I missed her.
Christmas came and went.
The date arrived for my radiation. I told the children that they were having a long sleepover at grandma’s so they were happy. I arrived at the hopsital only for them to tell me they had forgot to order the pill. I cried. Again. I was so angry. Today was one of the most important days of my life, a day that I had been dreading for 2 months and they forgot?! I was re booked in for the following weekend which meant more uprooting for the children, having to explain why I was back and trying to make them feel safe and settled.
A week later I was back. I was shown into a tiny room which was like a prison cell. Glenn was told he had to leave me at this point. I wouldn’t see him again for 4 days. They gave me the pill to take. It was the size of a small child! Weirdly my biggest worry at that moment was I hope I don’t dribble the water down my tshirt! (I’m a bit of a dribbler.I choke on nothing around twice a week 😂)
The pill was swallowed successfully, Tshirt was dry (result 👍🏻) and the door was closed. In my room I had a en suite bathroom. In reality it was a cupboard with a toilet and a shower in. Everything was covered in cling film to stop contamination while i was radioactive. In the main part of the room there was a bed, a tiny tv and a table. Again, everything covered in cling film. I have never been so scared and felt so alone in my whole life. The hours blurred into one long Jeremy Kyle binge, the only thing to make my life seem normal. Meals were thrown through a tiny opening in the door. It was like prison.
The day came when I was finally allowed out. I was allowed home and in the same room as Glenn and the children, but we had to be at opposite ends. My youngest was 3 at the time and I had to explain to her that mummy can’t cuddle her right now. It was horrible.
I thought that was the end of my journey. Little did i know it was just the beginning. Life without a thyroid is tough. Life after cancer is tough. But nothing is as tough as that first year. 2013 is the year I lost everything but gained so much more in return.
If you have got the the end of this insanely long blog then thank you!
I would love to share my journey with others to raise awareness, to meet people on a similar journey and even if I make one person feel like they are not alone in this I will be happy.
Until next time 😘
