Thyroid

My Invisible Illness

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What a week. Or two weeks, it’s quite a blur.

I have had a headache for nearly 2 weeks solid. The Tuesday was so severe that it made me sick and I couldn’t even take my children to school. I managed to get in to see my GP Wednesday and annoyingly it was the lady who was extremely unhelpful before. She is the GP who told me in the past that none of my symptoms are linked, even though I never had any of them before I had my thyroid out. The GP who makes me feel like its all in my head.

So I arrived, already deflated, knowing this would be a waste of time. I sat and explained my headaches to her with a great sense of deja vu as I had had this very conversation with her 2 months before.

She asked me lots of questions and came to the conclusion that it was because I was stressed as I have 4 children. Then she printed me off a prescription for sleeping tablets. Only 7 mind you, as clearly I’m way to unstable to manage anymore than 7. So in her head after 7 days of sleeping tablets I would feel as good as new! I told her that it wasn’t due to tiredness, yes I suffer from insomnia, but my headaches are never a direct result of that. She laughed. Actual snigger at my expense. How silly of me know know my own body and to have researched into the condition that has consumed my life. Of course she is right after that paragraph she read in med school once about the thyroid. She also refused to give me any pain killers even though I practically begged her.

So I humoured her. I took the tablets and put up with the pain. Don’t get me wrong, temporary end to the insomnia was great, but the burden it put on Glenn was not worth it. It was not fair on him to take over everything while I slept! Thats not how families and marriages work.

So we are now nearly 2 weeks later and its still there. Not as bad but it’s there, niggling away reminding me that my body hates me.

We had a family wedding yesterday, which was amazing and I was honoured to be invited, but it was such a long day. They live a few hours away so we had to get up super early to make the 12pm wedding. It’s days like this that having to wait an hour after meds to have a coffee suck! Thank god for motorway costa! I had already taken my first set of pain killers at 7am as my head was already pounding. I knew this was going to be a long day!

The wedding was so lovely, Natalie looked beautiful and so did all the bridesmaids and mother of the bride. The food was amazing, the service from the staff was incredible. Overall the perfect day.

But inside I ached. My bones hurt from standing, my head had not let up all day and I could barely keep my eyes open. But I didn’t want to be the ill one. I wanted to be me. I wanted people to not ask about how I was feeling, or about the cancer I wanted to just be like everyone else.

I managed until 10.30pm then had to give in and go to bed. Luckily having a 2 year old I could use her as an excuse!

I feel absolutely exhausted today, like a hangover even though I didn’t get drunk! How is that fair?!

I have pre booked an appointment with the GP who actually understands but its not until  the 14th July, so looks like my headache will be staying for a little while longer yet!

Until then I suppose life goes on. Children don’t feed themselves!

xxx

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Thyroid

Father’s Day

Fathers Day. Ergh. The day I dread for the weeks that lead up to it. Shops full of heartfelt messages on cards, adverts showing how fun having a super cool dad can be. Blergh. Fuck you Father’s Day. 
Years of never feeling good enough, always nervous and worried you were going to tell me off, yet still weirdly desperately seeking your approval. Never fully able to be myself so rather than disappoint I would just not say anything. A whole childhood with only a handful of memories to show for it.  

Arguing with you on that day. The day. The day that would change our lives forever. The phone call that to this day I feel somehow guilty about, even though I did nothing wrong. But doing what you do best, you made it all about you. 

Even through my diagnosis, I thought you would reach out. A call, a text, even a message passed on through my amazing grandparents to say ‘ I know I’m a dick, but I’ve heard you’re ill. I’m sorry’ but no. Nothing. Too wrapped up in your own world to even consider that for the first time in my life I needed you. But history repeats itself doesn’t it. Instead of being angry at you, I was angry at myself for needing you. 

6 years later and we are here. Still bitter. Still angry. It doesn’t get easier, I just have more important worries consuming my days. 
The hardest part is we will never get closure. We will never get an apology, never get an honest conversation with you because in your head, you did nothing wrong. 

Your beautiful grandchildren don’t even remember you. Their lives are bursting with love from the amazing people close to them, so they don’t need you, we have all made sure of that. 

So without closure we are just left. Left to somehow carry on, being broken inside from your lies and manipulation. But we are closer. 

My beautiful Mum and Sisters are my best friends so I suppose we have you to thank for that. It pushed us closer together and made us a team. Us and you. 

My children and my sisters children will never have to feel like we did. They will never feel not good enough all the time and scared to have their own voices incase it offends. They are beautiful little people (well Vinnie not so little 😂) They live everyday with the confidence to be themselves without judgement. 

Father’s Day for us will to celebrate Glenn, Martin, Gavin and Karl and Declan and the amazing role models you all are. Selfless, hard working and loving. They are proper dads right there. 

So Happy Father’s Day, “Dad”. Have a nice day in your little flat for one 🖕🏻

Thyroid

Insomnia sucks


So still no update from the hospital. Not a phone call, letter, nothing. It’s ok it’s not as if I’m over here worried or anything. Oh wait…. I am.
This blog is not a moan about that, I’m not allowing it to consume me anymore. If it’s back then so be it, I’ll just have to kick its butt all over again.
I wanted to write about insomnia. Those 8 little letters that have such an impact on my life. It’s currently 1.43am and I’m the most awake I’ve felt in weeks. My body is exhausted but my mind just won’t switch off. All I can think about is that fact I’ve gotta get up in 5 hours for work and I was so tired today, tomorrow will be a million times worse.
It’s in these small hours of the morning that think bout things. Not a normal person type thinking. Oh no. Like how I can recite every single word to ‘You’re Welcome’ and mentally want to high five myself. Then I remember I’m a 33 year old women and it’s 2am. Not cool. Or planning in great detail the holiday we have mentioned maybe twice, in 2019. Two whole years away. But apparently I know what outfit I will be wearing on each of those days.
Insomnia makes you crazy. Or it makes me crazy at least.
My head is killing me, actually feels like it’s going to explode. Those who know me know I’m not a drama queen in the slightest so that must be the case 😂
I’ve got a fidgety two year old in bed with me now, as it seems she’s decided that 2am is fun too. Better than last week when she woke up demanding to watch Umizoomi or when she woke asking for a banana. Kids are weird.

Insomnia apparently is not a symptom of Hypothyroidism, according to my consultant. Neither is the weight gain, the 4 day migraines or the fatigue. The very symptoms which convieniently only started when they removed my thyroid.

So it’s now gone 2am and I’m going to find a new box set to watch, seeing as in the evenings I cannot sit through more than 10 mins of an episode without falling asleep.

Goodnight.

xxx

Thyroid

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

 

 

 

 

Thyroid

Cancer is a word, not a sentence.

today blog

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.

Thyroid

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

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