Thyroid

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

Thyroid

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

Thyroid

Families Like Ours

 

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

Cancer · Thyroid · Uncategorized

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 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 😘