My Radioactive Clinical Trial

A trial to see if radioactive iodine treatment is necessary for low risk thyroid cancer (IoN)

Lots of people have been asking me about my trail and what it entails. I will try and explain it the best I can.

The aim of the trial is to see if radioactive iodine treatment (RAI) is necessary for people who have low risk thyroid cancer.

RAI explained

Radioactive iodine treatment (RAI) is a type of internal radiotherapy. The treatment uses a radioactive form of iodine called iodine 131 (I-131). The radioactive iodine circulates throughout your body in your bloodstream. Thyroid cancer cells pick up the iodine wherever they are in your body. The radiation in the iodine then kills the cancer cells.

Radioactive iodine is a targeted treatment. It is mainly taken up by thyroid cells, having little affect on other cells.

Radioactive iodine treatment may be given:

• after surgery, to kill any cancer cells that may have been left behind
• to treat thyroid cancer that has spread
• to treat thyroid cancer that has come back after it was first treated

Before you have radioactive iodine treatment, you may have a man made type of thyroid stimulating hormone called recombinant human TSH (rhTSH) for a few weeks. It helps any thyroid cancer cells in the body to take up radioactive iodine. Or, your doctor may ask you to stop taking your thyroid hormone tablets. They call this thyroid withdrawal.

You stop taking the tablets for 4 weeks if you are taking T4 (thyroxine) or 2 weeks if you are taking T3 (liothyronine). This is because the I-131 works best when the levels of another hormone called TSH (thyroid stimulating hormone) are high. The levels of TSH in your blood start to rise as soon as you stop taking thyroid hormone tablets.

You will be asked to start eating a low iodine diet 2 weeks before you have radioactive iodine treatment. You need to have a low iodine diet because too much iodine in your body can stop the treatment working so well. You don’t have to cut the following foods out altogether but have as little as you can.

To have radioactive iodine treatment, you go into hospital. You will be looked after in a single room, where you stay alone. You usually stay there for a few days.

You usually have the iodine as a drink or capsule. You won’t be able to eat or drink for a couple of hours so that your body can absorb the iodine. After that, you can eat normally.

The treatment makes you slightly radioactive and you will stay alone in a single room for a few days until your radiation levels have fallen. A radiation monitor (Geiger counter) may be used to check your levels of radioactivity or test anything that is taken out of your room. Some of your possessions may be kept on the ward for a couple of days if they show any radioactivity. After that time, they will be safe again and the nurses will give them back to you to take home.

You should try to drink plenty of fluids to help flush the radioactive iodine out of your system.

Your sweat and urine is radioactive during this time. Your sheets may be changed every day and the hospital staff may ask you to flush the toilet more than once after you have used it.

Being in a room on your own (isolation) protects other people from radiation. Pregnant women and children are not allowed into your room. Other visitors are only able to stay for a short time each day. And the amount of time staff are allowed into your room is limited.

It is important that you know that you are not at any risk from the radiation. The staff in the hospital give this treatment to many people. So, the amount of radiation they are exposed to has to be limited.

Being looked after in a single room can feel lonely. Some people find it frightening. It can help to talk to the nurses about your worries. They can reassure you.

For a few days after radioactive iodine treatment, you will be slightly radioactive. Every day the doctors will come and take measurements from you to work out how much radiation is left in your body. They will tell you when the radioactivity has dropped to a safe level and you can go home.

If you had to stop taking your thyroid hormone tablets, your nurse will tell you when you can start to take them again. Usually, this is 3 days after your treatment.

You will need to take thyroxine tablets to replace the hormones that your thyroid gland normally makes. Your doctors will want to keep your thyroid hormones at a slightly higher level than you would normally need. This is to stop your body producing another hormone called thyroid stimulating hormone (TSH). TSH can help some types of thyroid cancer cells to grow.

The Trial

The trial will recruit at least 454 people. It is a randomised trial. The people taking part are put into treatment groups by a computer. Neither you nor your doctor will be able to decide which group you are in.

Half the people taking part have radioactive iodine treatment, the other half do not.

The trial team will ask you to fill in some questionnaires

• When you join the trial
• After 2 months
• Between 6 and 9 months later
• Then every 6 months for the next 5 years

The questionnaires will ask about side effects and how you’ve been feeling.  This is called a quality of life study.

The trial team will ask your permission to keep a sample of cancer that was removed when you had surgery, and to take an extra blood sample. Researchers will use these samples to learn more about thyroid cancer and how best to treat it.

When you join the trial, you have a blood test and an ultrasound scan of your neck to see how much (if any) thyroid tissue is left after your operation.

You will then have another blood test to measure thyroglobulin levels. Before you have this test, you have to stop your thyroid hormone tablets for a while, or have a drug called recombinant human thyroid stimulating hormone (rhTSH). Whether you stop your tablets or have rhTSH will depend on the usual practice at the hospital where you are having your treatment.

If you are in the group having radioactive iodine, you will have this after having the scan of your neck, possibly on the same day. You may stay in hospital for between 1 and 3 days while the radioactive iodine takes effect. If you stopped taking your hormone tablets, you can start them again about 2 days after having the radioactive iodine.

If you are in the group not having radioactive iodine treatment and you stopped taking your hormone tablets, you can start them again straight after having the blood test.

You have a blood test 2 months later. The doctors may change the dose of thyroid hormones you take after looking at the result of this test. You will not have to stop your hormone tablets or have rhTSH at this visit.

Between 6 and 9 months after having the first neck ultrasound scan (and radioactive iodine treatment if you had it), you have another ultrasound scan and a blood test. You will also have a 2nd blood test to measure thyroglobulin levels. As before, you have to stop your hormone tablets for a while, or have rhTSH for 2 days before this blood test.

You then go to hospital every 6 months for the next 5 years. You have a blood test at each visit. You have an ultrasound scan twice in the 1st year and then once a year for the next 4 years.

So this is has been my life for 3 years now. Another 2 more to go.

It just goes to show the money people donate to Cancer Research really does help. Without donations this trial wouldn’t exist. I volunteered to participate in this trial so others potentially wouldn’t have to go through the ordeal that I did. This whole journey was so hard for me and my family so I want to help change it for people in the future.

xxx

 

 

 

 

Cancer is a word, not a sentence.

So its been a week since I had my scan and still not heard anything. Everyone keeps trying to reassure me saying “No news is good news” but I’m not sure. After all the waiting they have made me do in the past, I have learnt that anything can happen. You just have to be prepared.

This week has been easier than I thought it would be. Maybe it’s because I know what’s coming, maybe its because I’ve been keeping myself busy, maybe it’s because these past years have taught me a different kind of strength or maybe it’s because I have the most amazing support network around me. Maybe its all of them. Either way it’s worked.

I’ve been throwing myself into organising my support group. We have been given a grant from Macmillan which is in the final stages and should be in the bank account within the next week or so. I put our first ever cheques into the bank account which was an amazing feeling! I have been invited to attend a launch of an amazing charity called YouCan who help young people and their families who have been diagnosed with cancer, so I am super excited for that. We have a Summer Garden Party lined up in July with a bouncy castle, food and raffles where families can all come together and meet others on similar journeys. Where children who’s lives have been affected one way or another with cancer, can play with other children and take comfort in the fact they are not alone.

When I first had the idea of setting up a group I never imagined having over 100 members and receiving 4-5 emails a week from people who need support. We only meet once a month and have things planned every month right up until February 2018! It’s been hard work and I have sometimes had to take a step back and remember why I’m doing it alongside my own hectic life, but I’m so proud of how far we have come as a group.

When I was diagnosed I had to leave my degree at University as I was missing too much time with he operations and the RAI but there was no other choice. Health comes first. To me, this was one of the worst side effects to having cancer. I had worked so hard to get there and then in a blink of an eye it was ripped out from underneath me, leaving me with nothing. I did however receive and invitation out of error to what would have been my graduation. Thanks for that CCCU, kick me while I’m down why don’t you! I think you can guess that I didn’t go!

When I was well again I started working 1 day a week, in a job which couldn’t have been more different to what I was used to. It was great to get back to doing something, it made me feel important again and that I had a purpose. Sounds silly being 1 day a week but thats how I felt. But it’s not what I love, it’s just a job. My brain is bored.

I am now making career plans for the future which is so exciting! I finally can get back to  something that I have a passion for and not just something to pay the bills. This time next year I will be a student again! It will take lots of hard work, money and perseverance but I will get there! Watch this space!

So to you, Cancer, you don’t scare me. You make me stronger. Stronger than I ever imagined.

Cancer does not own me. I own Cancer and there is no way it is taking anything from me this time round.

Bring. It. On.

Collaborative practice…. my arse

So today was my scan.

I arrived at the X-ray department which is where I was told to go on my letter. I arrived in plenty of time, which I’m glad I did as the que was out of the door.

X-ray department gave me a blue envelope containing a form and said to give it in to ultrasound which was in another department. I wonder how many miles I have walked going from appointment to appointment at this hospital? I know each corridor like the back of my hand.

Normally during my appointments I don’t like to ask questions for fear of wasting their time or being one of those patients. Now I’m sick of it. Sick of never been told why I’m there. So I opened the envelope and read the letter.

Around 20 words scrawled across the form gave me more information that I had had in months. Scan in 4 weeks after seeing consultant to check for recurrence on the left side. Why could they not tell me this? Why am I always the last to know about my own body? I was right.

I took a seat in the darkest waiting room for what seemed like forever. I love people watching normally, but today every single person in that room pissed me off. There was plenty of seats left as only 4 of us in there but this lady decided to sit right next to me. She might as well have sat on my lap. Anyone who knows me knows I’m pretty fond of keeping personal space personal 😂 I hate having to share my space with someone else. But there she was. Right fucking there. She pulled out a bag of cheese an onion crisps and started to eat.  Possibly the loudest I’ve ever heard anyone eat. As if that wasn’t pissing me off enough she then proceeded to lick and suck her fingers. One of the downsides to my hypothyroidism is how quickly I get irritated. I have zero patience in life in general, which I am working on 😂 but couple that with the level of anxiety I was facing today did not make a good combination. I got up and moved seats to the other row of free chairs. I’m pretty sure I tutted too, in my very British manner 😂

Anyway so my name was called. There was 3 men in the room who were all so lovely, asking me questions about my cancer, how it was found and why I was there. I returned that question back to them explaining I had no idea! They didn’t seem to know much either, only the words I had read on the form. The consultant hadnt even wrote a note in my notes.

Most health professional I’ve met on this journey have been nice and helpful, but together it’s a joke. There is zero communication in what is meant to be a network of teams. During my first year at Uni, it was drummed into us the importance of Collaborative Practice amongst health professionals. I think they need to let the actual health professionals know as it seems they missed that part of their training.

Two of the sonographers took it in turns to scan me as I got the impression one had spotted something and wanted confirmation.

I was right.

A 6mm nodule on the left side. So tiny to hide and make two of them check but big enough to change my life.

6mm of evil.

6mm of dread, fear and overwhelming anxiety.

It’s back. That’s all I keep thinking.

I asked what now? What happens next? And they didn’t know. It’s down to my consultant to decide. In other words wait until they send a letter to my GP which I will get a copy of, which will explain everything. Again.

Now I wait. Wait for a letter? A phone call? I haven’t got a clue what I’m waiting for but I’m waiting. With every single thing crossed hoping, praying I don’t have to go through 2013 again.

But until then I’ve got children to feed, a life to lead as a mum of a large busy family. I need to find my ‘I’m ok’ smile and plaster it on which will be a lot harder this time because quite frankly I’m shitting my pants as I know what’s coming.

xxx

The waiting game…. again

So this happened today. A letter for an ultrasound that I have no clue about.

 At my last appointment in January I had a new consultant. He was a very confident man, looked like he knew what he was talking about which was really reassuring and quite refreshing given my track record of health professionals. 

I arrived for my appointment in plenty of time, only for him to be running 45 mins late. 45 mins of more parking charges. 45 mins of keeping an already agitated toddler entertained. To be fair 45 mins late is becoming the norm at my appointment. My worst one was running 4 hours behind, so 45 mins in nothing in comparison! 

At every appointment I get my neck felt for any lumps, bumps etc. He started to feel my neck and made a few funny hmm noises, making me think he had found something. He paid particular attention to the right hand side which is the opposite side to where my cancer was. 

He turned to me and said “Do you mind if I have a quick look with a camera” of course I said yes, naively thinking he meant just opening my mouth and looking in my mouth. 

But I was very wrong! He came at me with a long wirey device and shoved it right up my nose! I was not prepared for that! I was terrified, started to gag. My nose was running, my eyes were running, my daughter was crying in her buggy obviously seeing me in distress. My Trial nurse was in the room with me and was equally as shocked as me! 

He then returned to his seat and started to write. He didn’t even offer me a tissue I had to ask him for one. He started asking questions to do with my trial, like when were my bloods taken, when was the last time I had an ultrasound (which was the month before). I had only had my tumour marker blood test done that day, so he didn’t have any results. 

He told me if the results are bad I would be contacted and if they weren’t I wouldn’t. 

I came out feeling so confused and stupid as I now had all of these questions rushing around in my head but it was to late to ask them. My trail nurse was as lovely as always, asking me if I was ok and admitting even she didn’t know what had just gone on. 

A few days passed, then weeks. I had not heard anything so I assumed that all was ok. Bad when you just have to assume about something as important as this. 

I then received a letter from my consultant to my GP stating that he had had a look at my vocal cords with the camera as he felt a lump. That’s all I could work out in the letter. 

Now 4 months later I get this. 

When you have been diagnosed with something like cancer it turns you into a nervous wreck. You question everything. You imagine the worst all the time. But do they recognise this? Do they make you feel at ease? No! They send me random scans out of the blue, don’t tell me what it’s for, don’t let me know the results of my tumour marker. I’m like just a number not a person. 

So we will see what next Wednesday holds. 5 whole nights of worry when I already find it hard to sleep. 

I’ll keep you posted

X

Tired of being tired

It’s just gone 9pm and I’m in bed. Not exactly the rock and roll lifestyle. I’m feeling pretty shitty this week so probably won’t be a very positive blog! But that is what I want to achieve from this. Raw, honest accounts of my life without a Thyroid. 

I’m lucky if I make it past 9pm these days.  It takes us two sittings of watching an episode of a box set as I always fall asleep. The frustrating part is that half the time, I get to bed, exhausted beyond words and can’t sleep. At that moment at 2am when everyone in my house is fast asleep, I’m more awake than I’ve been in days. My body chooses this moment. Not the moment when I need to get up in the morning to do school run, not the moment where my toddler is having a melt down over the wrong colour plate, so I give in just to make life easier. This moment. This lonely, pitch black moment where you would give anything to have half the tiredness you feel in the daytime. 

Then there is the constant feeling of just ergh. I can’t explain it. It’s like someone has taken my starter motor out and I’m just ticking over, not quite there. But life has to carry on. There are children to feed, dogs to walk, housework to do. It’s like I’m on auto pilot just going through the motions patiently waiting for bedtime to come around again. Even though I know I might be awake all night. 

If that wasn’t hard enough there is my weight. I have put on 2 stone since my operation. Every time I have an appointment with my consultant I watch as they record yet another increase of weight. On my last appointment in January I brought this up with my consultant. I explained that I am getting married in August this year and don’t want to be this big. His reply? As helpful as ever and very much expected, was “Its just one of those things that you have to put up with now” Ok so 2 stone might not sound a lot to some people but to me it’s huge. I watch what I eat, contantly on the go, but I’m still watching it creep up. I’ve been doing some reading lately and my medication is something called T4 but to lose weight my body needs T3. Something that here in the U.K. We don’t get offered. Doctors will even refuse a blood test to test T3. My next appointment is in June so I will raise this issue with him now I’m more aware, but after reading other people’s blogs I’m not holding my breath. But I will do what I’ve always done on this journey and that’s fight. I will be that patient who is always moaning and won’t give up until I get somewhere. That’s the only way you seem to be heard. 

Well it’s bank holiday tomorrow and my little family are all at home together without one of us working which is so rare! So I am going to try and enjoy our day together (even though typical for an English bank holiday it’s supposed to rain!) 

Thanks for reading 

xxx

Families Like Ours

Me and Vicky

Me and Loz

Glenn and I

My Mum and I

My sisters, Vicki, Me, Sophie and Hannah

 

It hasn’t been long since I last wrote but today has got me thinking. I want to write about a subject that is so important when you diagnosed with something like cancer.

Support networks.

The people in your life who pull you up when you are at rock bottom, who are your best friends but happen to be family too. The friends who you can be stupid with. The friends who will help you polish off a bottle of wine. The friends who will be up texting you back at 3am when you can’t sleep and who listen to you, I mean really listen. The friends who see you giving your toddler a second bag of crisps of the day and don’t judge. The friends who love your children like their own, even when they are being arseholes. The friends who you can text while hiding in the kitchen, eating the last of the easter eggs in secret, asking them if no one sees it doesn’t count (right?!) The friends who are battling their own demons but still text to ask if you are ok.

Those are the people I have in my life. The amazing bunch of people who I am lucky enough to be able to call my friends.

But there are also the ones who have gone. The ones who took a step back when it got tough. The ones who didn’t know what to say or how to act when I was ill, so they just never said anything. The ones who I had 10 years of friendship with, now let me see quick glances of their lives via Facebook. We exchange the odd like, the obligatory ‘We should catch up sometime’ even though we both know we never will.

It used to make me sad, angry even. The time I needed you the most you weren’t there. But now I’m ok about it. I get it. I enjoy looking at snippets of your life and I am glad you are doing so well. Life’s good this end at last, too.

It led me to thinking about other people going through similar journeys. I can’t be the only one who has lost friends because I had cancer? That really does sound horrible when it’s said like that. I then began thinking about what could have helped. More knowledge on cancer? Making it less of a taboo subject?

I decided to set up a Cancer Support group in my local area, aimed at families and friends of those effected by the horrible disease. After months of planning and applications for grants and bank accounts, I now run a successful Support group called Families Like Ours. We have over 100 members in little over a year and we have financial backing from Macmillan which is amazing. Little old me who spent so long worrying about my own future, is now helping others on their journey- crazy!

My circle may not be the biggest, but the people in it are genuine and to me that’s all that matters.

xxx

Introducing me

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 how 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? Did he only stay 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 😘