Thyroid

What’s a bit of rain when you are having fun!

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On Saturday I held a Summer Garden Party for the cancer support group I run. It had taken months to plan with so many people helping to make it a success. The week leading up to it had a terrible weather forecast! Rain and and more rain! I am always super prepared and like to have a plan B, C and D, but this time there was nothing. A lovely group member has an acre of land and she offered for us to hold it there. Perfect. I hired bouncy castles, organised a face painter, glitter tattooist, an ice cream van, and lots more. All extremely summery things, which would be perfect in the sun. Don’t ruin this for us now rain!

The night before we desperately scrambled to come up with a makeshift plan B, but we didn’t want to be defeated. We woke up Saturday morning to glorious sunshine and it was dry! Result! That was until 2.30pm came and guests started to arrive , the heavens opened. Not just a bit of rain either, actual pouring! Stupid England!

But we carried on, attempting (and failing) to make shelters out of tarpaulin, erecting flimsy gazebos and trying to cover our lovingly prepared picnics from getting water logged!

But it was a bloody good day! There was so many people, children having the time of their lives on a wet bouncy castle, having water fights, sliding in the mud! It was lovely to watch.

We made a massive total of £400!! I didn’t even dream of covering the cost of the bouncy castle, let alone making that much! It was extremely humbling. All of the hard work and stress paid off.

Two lovely ladies, who have been coming to the group since the beginning, 18 months ago, helped massively. If it wasn’t for them, it wouldn’t have been as successful. When I started the group I wanted to help others make friends but I never even thought that I would too. I am very lucky.

I have just finished a write up for the local paper and completed an application form for a grant which I think we may be considered for. Fingers crossed.

I’m glad I have stuck to my initial ideas. The group is a huge success and is growing so fast. Its exciting to think where we will be in another 18 months!

xxxx

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Thyroid

From Hyper to Hypo

It’s been nearly 2 weeks since my thyroxine dose has been lowered and I’m really struggling already. My agonising headaches have disappeared which is an amazing feeling, but being hypo is hard. 

It’s summer holidays and with 4 children I don’t have time to be feeling sorry for myself, they want to be out doing things! But it’s day 5 and so far we have managed one park trip for 20 minutes ( I lied and said we were there longer, time goes quick when you are having fun, right?!) 

The rest of the time we have been indoors. Not sure if it’s related and how it affects your immune system but in the two weeks I’ve had a sickness bug followed by a horrendous cold. Who even has a cold in July?! 

The lethargy is the worst I’ve ever felt. I feel like I don’t even have to energy to hold my own head up and that’s not a Gemma exaggeration haha. I’m like a zombie. It’s not even tiredness, it’s like someone has sucked the life out of me and I’m just a empty shell. Even coffee doesn’t help. 

It’s hard not to let it beat you when you feel this shit. 

It’s funny how one tiny 25mg tablet could make such a difference in how I feel. My body’s norm is obviously somewhere inbetween, but with my next appointment not until January, life has to go on. 

But from now until January I have so much I need to feel better for. I get married in 29 days! We are going to Vegas which is a 10 hour flight, a few days there then to LA another 4 hour journey, then the 10 hours back. The way I feel now I’m worried it’s all going to be too much. 

My consultant was fantastic, like I said in my last blog, but even he doesn’t realise that between my 6 month appointments, my life has to carry on. He told me this new dose would probably make me hypo and that it would take a few tweeks to get it right. So in the mean time, I have to just wait it out.

 But lethargy is something you can’t paint over. I can’t pretend it’s not there, like a lot of my other symptoms. I get cold now, so I put more clothes on. I’m tired earlier at night, so I go to bed earlier. But this? “No kids, we can’t do anything for the next 6 months, because I have to wait for my next appointment” I can’t see that happening. 

So today we are going to the beach hut. Comfy chairs and cups of tea while the kids play. 

But if you see me, I probably won’t hold a very good conversation. I’m sorry if I yawn through everything you are saying to me, I’m not being rude. My kids outfits probably won’t match and will be un ironed, but they will be clean and fed… just about 😂

So only 186 days to go. And I’m counting every single one 

xxx

Thyroid

Some good news at last

 

Yesterday I had my dreaded hospital appointment, the one I have been patiently waiting 6 months for.

I’m so relieved to say it was good news! Tumour marker came back negative! So the nodule must just be a lymph node.

I see a new consultant every time I go which means I can’t build a relationship with the person who I am meant to put all my faith in. Up until now all the consultants I have seen have been rude, rushed and have treated me like just a number.

Yesterday I saw Mr. Balfour for the first time. He is a surgeon who performs the thyroidectomy then sees you for every check up after. Well for other people anyway.

To my surprise he was amazing. He talked me through the results of my scan, explaining what he could see and what it all meant. He showed me my blood results on a graph so I can gain some understanding of what’s going on in my body.

He explained that my TSH has to be suppressed to stop the cancer coming back, which I knew and that it was on the perfect level. My T4 was ‘toxically high’ (in his words) and my T3 was within the normal range. He asked if I suffered with headaches, insomnia, tachycardia, heart palpitations and more. He was describing me to a tea! I told him about my 6 day migraines and cluster headaches and the fact that they get so intense they make me sick. I explained about my GP not giving a shit and giving me sleeping tablets. You could see the empathy in his face, he genuinely cared about how I felt. It was like a breath of fresh air. In one half an hour appointment he had restored my faith in medical professionals.

I ticked about 9 out of 10 common symptoms for hyperthyroidism and annoyingly the only one I didn’t have was weight loss. My body had been in overdrive, like a furness on full steam…but I was still piling on the pounds. Still gaining weight faster than I can get rid of it. Ive gone from always being the skinny one, not having to watch what I eat to the one who now has people saying ‘well you carry it well’ and ‘I think you look better for it’. Although you think thats nice and helpful, its really not.

I have gained 2 dress sizes since my operation 4 years ago. Although that might not sound a lot to some people, to me it’s massive. Pardon the pun.

So because my levels were dangerously high, Mr. Balfour has lowered them. This will mean all of the horrible headaches should go away as well as the other gross symptoms. I actually can’t wait for a day where I’m headache free! But the negative side to lowering my dose mean more weight loss. If my body is not burning the fat on full steam, god knows what it is going to do at a normal pace.

So it’s a choice between headaches or weight loss!

Health has to come first, so thats it, dose lowered. Goodbye skinny beach dream, hello increasing weight. argh.

He has promised me I will see him at my next appointment in January, where he will keep changing my dose until its perfect.

So yes its shit, but my god it could have been a lot worse. I feel like a weight has been lifted at last. 6 months of worry, bringing up old fears and memories all gone.

It’s much too easy to let the bad things in life consume you. I haven’t wrote a blog for a while as I was not in the right place and didn’t want to be that depressive girl who only ever moans about what’s wrong with her. I am not that girl with no thyroid, I’m me. I drink far too much wine, shout at my kids far too much and binge watch way too much Corrie. But I’m bloody happy.

Now I can look forward again. It’s 39 days exactly until I marry my amazing fiancé and celebrate with my family and friends.

Lifes pretty good

 

xxx

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

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