The Christie, Stopping Liothyronine medication and Low-iodine diet

The Christie 21st October

On the 21st I went to The Christie in Manchester to talk about my Radio-iodine treatment. I went with my mum and boyfriend as they wanted to know where it was for visits. Yes we got lost and ended up being an hour late but the important fact here is that we managed to get there... eventually. Whilst waiting to be seen Charlene who is a young persons cancer worker came to see me and said she would stay with me throughout my appointment so she could give me a tour afterwards and we could get to know each other better. 

When I was called in the doctor who I am suppose to see was on holiday so there was a replacement doctor. She asked me if I knew what was going to happen to which I replied I knew most of the details thanks to Charlene. She explained that I would be staying in a room on my own that has a bathroom, a TV, I am able to bring in books but they might have to be left there a while due to the radiation. If people are to visit they have to stay behind a led wall and visiting times are limited from 20 minutes to an hour depending on the amount of radiation there is which will be monitored with a Geiger. The nurses have to wear led vests if they come into the room and the door will be shut. Makes me feel as though I won't get any fresh air for a week.

The doctor explained what the treatment was, that I will be taking radiation in the form of a capsule that goes directly to the thyroid gland where it is absorbed by the thyroid tissue. It will also travel to anywhere else the cancer may be which will show up in a scan. This treatment is meant to destroy the rest of the thyroid cells that remain after surgery. The treatment will leave you radioactive for a while causing you to keep your distance from people and animals for weeks or months. 

Some side effects of this treatment include:

Short term

• Swelling of the neck
• Sore throat (may take weeks to settle down)
• Dry mouth (may take weeks to settle down)
• Taste of food may change (may taste a metallic taste for weeks)
• Nausea
• Salivary glands may swell for some weeks

Long term

• Permanent dry mouth
• Fertility- may find it hard to conceive ( can not get pregnant for up to a year)
• There is also the possibility of getting secondary cancer 

You have to stop your hormone tablets two to three weeks before the treatment which may cause you to become:

• Tired
• Have mood swings
• Have water retention and weight gain
• Feel weak

You also have to start a low- iodine diet two or three weeks before treatment which includes you not being able to eat foods such as:

• Dairy (cheese, milk, eggs, yoghurt's) or anything with dairy such as chocolate
• Sea salt and iodised salt
• Seafood/ fish
• Bread and pastries
• Soya based products
• Foods artificially coloured red or pink with food dye (E127)
• some cough mixtures and health foods/ supplements
• No fast food, takeaways or food from restaurants 
• Egg noodles
• Onions, eggplant and garlic
• Some cereals
• processed meats

You are allowed to eat:

• Fresh and frozen fruit and vegetables
• Fresh and frozen meats
• Rice and pasta
• Home made bread
• Cola, lemonade, sodas, fruit juices, squashes.
• The best way to make sure of the iodine content is to prepare all the food yourself from fresh.

When you have been told all this information you are asked if you have any questions, I did not so was asked to sign a consent form which was read out loud to me.

You will then see a nurse who will send you for blood tests and provide you with a folder which is handed to you filled with lots of leaflets and booklets filled full of information. There will be questionnaires to be filled out in there and information on facilities for people who are allowed out of their room. At the Christie YOU (young oncology unit) ward there are music rooms, games rooms, complementary therapies, art workshops. Unfortunately I will not be able to take part in these because of my treatment. There will be more information on the Christie website if you want to read more about it. 

All the leaflets and booklets included in the pack the nurse and doctor gives you

The Christie tour

Charlene took me, my boyfriend and my mum around the ward I will be staying in. Showed me the room I will be in which was tiny. The wall with led was odd as it moved to shut when you pressed a button high up on the opposite side of the room. The led wall was tiny, it came up to my stomach. There was however a TV in there with freeview even though I was told the signal would not be good. There was a playstation and an xbox. We were then shown the games rooms, music room, TV room and showed the nurses rooms around the ward where I discovered my old college tutor is working at the Christie. We was looking at each other for a while until she stood up saying I had a twin and knew me then came over to hug me. Everyone there was really nice even though it was a short tour due to the unit being fairly small but it is kept very clean and is not cold like some hospitals are. 

Stopping medication and starting low-iodine diet 28th- 30th October

I am on my third day of stopping my tablets and starting my diet in preparation for treatment. I am still taking my calcium tablets which I have cut down to one tablet a day last week instead of two. I am not feeling too bad so far. I keep forgetting what foods I can not eat and then get annoyed when I realise I can't eat what I wanted to. I have been having ups and downs between feeling tired and normal and feeling rather spaced out, not being able to concentrate properly. I have not been feeling very hungry but when I do get hungry it is usually late at night. Sleeping has not been easy even though I feel really tired when I want to sleep. My body feels very restless as if the tired aches go through to my bones leaving me feeling heavy. It has been gradually getting worse but hoping it does not get too bad.

I have been reading the low-iodine cookbook which might help you with recipe ideas. 

On the plus side my scar on my neck is fading quite a bit and looking neater but it still itches sometimes and feels sore.

Can barely see it now.

I shall keep you updated, my next post will be in two weeks before I have my treatment to inform you of how I am feeling further into the diet and stopping my medication.

If you have any questions please do comment and I will reply :) 

Thank you for reading.

Histopathology, Blood Tests, Questionnaires and recovery.

15th October- Hospital check up 

Had my hospital appointment at 11am. As soon as I went in to see Miss Thomas she told me there was good news and bad news as my lab report had come back. She told me that she took out my thyroid which was where the cancer was but my cancer had spread. She also took out all ten lymph nodes in my neck, one of which was also cancerous as well as one of my parathyroids, a mass of tissue in my neck and a mass from my chest. The tissue from my neck and chest was also cancerous and showed Hashimoto's Thyroiditis. Stage pT3 pN1a. 

We had a talk about how I was feeling and I informed her that I was tired a lot, had pains in my neck shooting up to my ears and my neck was itchy a lot of the time and she told me it would still take a while to heal properly and that my voice should come back fully within a year or so. She checked my vocal chords with a scope up my nose and down my throat which was uncomfortable as she did not numb it like last time so my eyes were watering and it hurt a little. She asked me to cut down on my calcium tablets so I told her about my shaking hands and she told me not to at the moment but I should do eventually or my parathyroids will get lazy and not work so I am cutting down to one a day next week. She sent me for some blood tests to check my hormone and calcium levels. 

Brightlight

I was sent to talk to a woman called Carolyn who asked if I would mind taking part in a three year survey for Brightlight. Over three years you take part in answering five questionnaires, some face to face in an interview, over the phone and online. The first is after 7 months of being diagnosed, after 18 months, 2 years and 3 years. It is for young people aged 13-24 years with cancer to see if there is anything that can be improved and how their experience was. Some questions that are asked are:

• How does having cancer affect you?
• What do you think of the cancer services you are receiving?
• What are the costs to you and your family, of receiving treatment and care?

You do not have to take part in Brightlight but you have to sign a consent form if you do. 

16th-20th October

Throughout the week I have been having ups and downs, feeling sick, dizzy and weak. On Wednesday I managed to have my first day out on my own to go to the Dentist and see my grandparents as well as make a chicken dinner for my family. It was a hectic day and left me very tired but I was happy for managing to go out on my own. It was good to be able to see my grandad and he seemed very happy too. Unfortunately it left me feeling down for my Aunts visit the next day where I was almost falling asleep whilst she was talking to me.

On the Friday I started to get a very painful headache on the right side that would keep on coming and going. I also had my first night out to the pub with my family and boyfriend which was fun, was able to see people I had not seen in a long time. 

Picture taken before night out.

The next day me, my boyfriend, my sister and her boyfriend decided to go up and see my dad after having a yummy burger king for dinner. We had a lovely catch up and I taught him how to make playlists on Youtube. We discussed what is going to happen at The Christie over a few brews and then went home. 

Me and Ric before our drive.

My sister

Me and my dad.

Sunday the day of rest. Today all I have done is sit around listening to music and write my blog post. Cleaned the rat cage out and got a lovely new rat called Tilly who was my mums rat but she can longer have them because of her allergies. My headaches have become worse and very painful. Bed at 11pm now as I have to be at the Christie at 9am! Early bird get the worm!

Ratigan Tilly.

Next post will include how it went at The Christie. 

Medication, Recovery and shaking hands

4th October- first day out of the hospital

As soon as I came out of hospital I went to my house to pack a suitcase as I am staying at my mums whilst recovering. I was feeling fine until I was looking through my wardrobe to pick out clothes and I started feeling heavy. My arms began to slowly drop towards the floor, my mum noticed and made me sit down saying I turned white and noticed I was sweating. My body was drained of energy and I had only been stood up for five minutes. I felt as though I was useless and should not be getting tired so easily. My hands were also shaking a lot through out the week but had become worse.

On the way back to my mums I noticed the car journey was hurting my neck and making me very tired, it was the first time since my surgery that I actually had to support myself for a long period of time instead of lying down and my body was being jolted by the car when it started and stopped.

When I was finally at my mums my sister and her boyfriend came round to visit. My voice was still rather quiet but loud enough so that I could be heard in a conversation between two people. It still hurt to talk and laughing was near impossible and caused pain in my throat and chest but I suppose it was a good type of pain as it was caused by happiness. 

5th October

Woke up feeling awful, could barely move and when I tried to get out of bed my legs would not hold me. They were shaking as I walked so I had to sit down when I reached the Living room. My hands were still trembling as well. Voice was still a little bit husky and quiet but would get louder every so often then revert back to being quiet, still can't shout yet. I felt as though I was going to throw up and had a banging headache, I was still taking my pain medication and hormone tablets as well as calcium tablets.

Big bag of meds!

6th October

The first time I was able to go out of the house, even if it was only a trip to Morrisons. Was nice to finally feel a bit of normality and like I was not being locked away for being to fragile or whatever. Had to be supervised to make sure I did not get to tired whilst out and about. I did have to sit down at one point and lean on the trolley as I was going dizzy and sweaty. It was worth it though to be get out of the house for some fresh air.

Hair tied back so it did not tickle my throat.

When I got back home I was so tired but I had my aunty come round to visit me so tried my best to stay awake to see her. She bought me my first ever plant, a beautiful orchid. I am going to try my best to look after it and make sure that it does not die!

7th October

Made myself look all lovely for my boyfriend visiting me, had not seen him for a week and he came straight to see me when coming back from Menorca. Did not see him for very long though as he was also with his friend. My hands were shaking very bad that day and would not calm down. Was impossible to carry brews into the front room without spilling them! I was going to go for a walk to the park but had no one to go with me. I took no pain medication only my hormone tablets and calcium tablets.The blood has started to fall off my wound a bit but is still sore to touch and difficult to have a shower as I am not allowed to get my would wet.

Was excited to see the boyfriend.

8th October

Not feeling too great, woke up with a banging headache, feeling dizzy and sick. Did not want to leave my bed so just stayed in bed most of the day making music playlists and talking to people on Facebook. 

9th October

Feeling pretty good today, decided to go shopping around Heywood with my mum and Neil even though my shakes were pretty bad but I just wanted to get out whilst I felt up to it. First we went into Dunnes so I could get some cheap underwear whilst it was on sale, decided to treat myself and went to Boots to get some nail varnish. Whilst I was in boots looking at the nail varnish my hands decided I did not like a certain nail varnish even though it was a really nice colour and dropped it on the floor for it to smash and go everywhere. I froze and was like oh no! Then ran over to my mum telling her what had happened, I started laughing even though I did not find it funny and we went and told the woman behind the till who was fine with it but I felt awful so apologised, bought my stuff and left. Besides having the shakes and feeling very tired later on I had a pretty nice day. The blood is falling off my neck more each day, I am finding it on my clothes. I am still no longer taking pain killers either. 

Feeling better for a day of shopping.

10th October

Woke up with a cold and could not stop sneezing which really hurt my throat. My body had put off sneezing until now and was only doing the build up to a sneeze where as now I was doing full blown neck tensing sneezes. My sister came down to stay for the night so we got to spend some time together. We watched some Dexter and used up the whole box of tissues and my sister dyed my hair back to my natural colour.

11th October

The boyfriend came down to see me and we joined my sister and her boyfriend on going to the Bury light show which turned out to be disappointing with hardly any stalls there this year. The only good part was the brass band. Stayed there for a few songs until I became really tired where my legs became very heavy and the cold got into my neck causing quite a bit of pain. My sister game me her scarf until we got back to her flat.

Me and the boyfriend.

12th- 14th October

Had a relaxing weekend staying at the boyfriends house as I was feeling tired quite a bit. Over the weekend pretty much all the scabs came off my neck leaving a neat pink scar but it also caused me to notice a stitch that had been left there which I tried pulling until my boyfriend made me realise that it was probably from the inside of my neck and told me to leave it alone. Still trying to get used to getting into a routine of taking my tablets.

Feeling very tired, wearing no make-up at the boyfriends house.

The scar up close. Healing rather well might I add.

My next post will include what happened at my next hospital appointment, the full cancer report and what happens next.

Operation day and hospital stay

30th Septemeber- Surgery time

I got to Preston royal hospital at 7:30 am with my mum, her boyfriend, dad, sister and my boyfriend. We went to the waiting area where I was told I was only allowed one person to wait with me so I picked my sister. The waiting area was pretty full, mostly old or middle aged people were in there, I was definitely the youngest. As I sat down to wait with my sister the nerves started to kick in as I have never had an operation before or had to stay in hospital. My sister being the little crazeball that she is just kept on trying to make me laugh and did not allow anything to become too serious.
After about 20 minutes of waiting I got called by a nurse who took my blood pressure and measured my legs for the sexy socks (deep vain thrombosis socks) and gave me a gown and sent me back to the waiting area. My sister kept my spirits high with jokes and her laugh that is infectious, it is so infectious it had the two men next to us laughing too. After another 20 minutes I got called to see another nurse, they kept telling me their names but it just wasn't sticking and I could not remember their names.
She asked me some questions about:

• If I was on any form of contraception like the rod or coil
• When my last period was
• Family history of blood clots
• Address 
• D.O.B and a few other things.

I was sent back to the waiting room again to wait for my surgeon and anaesthetist. My surgeon Miss Ligy Thomas came in and explained what she was going to do and asked if I had any questions. She made me feel quite at ease considering how nervous I was. Next the anaesthetist called me to a room to answer some questions, he was a junior anaesthetist, young and very nice.
He asked questions on:

• Family history
• How much exercise I normally do
• If I have had surgery before
• If I have ever done drugs or do drugs
• Reactions to anaesthetic
• Menstrual cycle
• Allergies 
• Height and weight

I was then told what to expect as I informed him my nerves were kicking in a bit. He sent me back to the waiting room for a nurse to show me where to get changed into my gown. My sister came with me and was poking fun at me putting the gown on showing my little bottom through the back to which I replied it was OK because I was wearing my lady boxers. I then gave my over night bag and coat to my sister to look after as I was going down to surgery. We gave each other a long hug before she left to meet up with the rest of the family. The nurse who led me to the surgery waiting room gave me a pillow so I cuddled it all the way to the next waiting room. There I sat patiently waiting whilst there was a woman opposite me lay down on three chairs looking extremely comfortable as if she had no care in the world until she was told to move by the nurse. Another nurse came into the waiting area and called my name so I followed her into a room where the Anaesthetist and junior anaesthetist was waiting for me. They took my dressing gown off me and undid the back of my hospital gown asking me to lie back on the bed with my pillow under my head. I did as I was told.  They asked me the usual questions such as D.O.B. and name, if I had signed the form agreeing to the surgery. They kept on talking to me after that to try and keep my mind off them sticking needles in my hand but I barely felt it anyway, the junior anaesthetist was very gentle and good at what he was doing. They put an oxygen mask over my face and stuck round pads with wires to my chest and sides of my ribs. The junior anaesthetist was standing over me looking at me and told me not to worry, everything was going to be OK and would be over soon.

After the surgery

The next thing I remembered was waking up being wheeled to a ward and really needing a wee. When I arrived on the ward the nurses came rushing over saying I should not be awake yet and asked me my pain level from 1-10 to which I replied 3 and they gave me some morphine. I told the nurse I really needed the toilet and she said I could not go to the bathroom as I had only just awoke from major surgery. So I asked again and was told if I really needed to then I would have to pee in a bed pan. I was not amused by this and in the end gave up and asked for the bed pan. She tried helping me and I told her to get off I could do it myself even though it hurt to lift myself up I was determined to be independent. After that was over I was allowed to go to the main ward to see my family. They were waiting there with smiles on their faces and I smiled back. At first I had a room to myself that they kept me in for a little while.My voice was very husky, deep and quiet. My sister and boyfriend took a few pictures of me even though my sister got a little bit emotional when she saw me so I told her to get over to the bed and give me a cuddle. I might look happy on them but bare in mind that at the time I was on morphine and these were about an hour after the surgery:

After these pictures were taken I was moved to the female ward 17 and my family stayed with me until 8:30pm. My surgeon came to see me and told me she had removed my thyroid, lymphnodes and some chest tissue. I had a total thyroidectomy and bilateral level 6 and 7 neck dissection. I decided to take a few photos myself of my neck and the drain that was sucking all of the bad blood out of my neck. 

That night the nurses would not give me any pain medication and I started to break out with a reaction all over my neck, face and chest. I was also informed that I had low blood pressure and low calcium. I waited hours until Carol one of the nurses came up to me and told me she was waiting for the doctor but he never came so she gave me some ibuprofen anyway and apologised. The woman next to me was also throwing up all night and had to use the bed pan to go to the toilet smelling the whole ward out. That night I did not sleep a wink and was so tired.

1st October 

After my first night in hospital I was feeling a bit worse for wear and just wanted to sleep but couldn't. I was in pain and had two ibuprofen after major surgery whilst all the other patients were on decent pain medication. I felt as though I was neglected for being the youngest on that ward as if I did not need attending to but maybe that was my own fault for not pressing the buzzer to get the nurses attention. On the day shift Emily who was looking after me when I was wheeled out of theatre was doing the morning shift and asked if I was in pain to which I replied yes. She got me pain relief and agreed that a reaction had occurred over night. She arranged for a Doctor to prescribe antihistamines to reduce the itching and inflammation around my neck as well as to see if the redness everywhere else would decrease. I was having blood tests three times a day and felt like a human pin cushion along with being extremely tired that I could barely keep my eyes open. I was started on hormone replacement tablets that I now have to have for the rest of my life, three times a day. The tablet that I am now taking is called Liothyronine.
The Doctor came by that morning to take my blood and I told him I barely had any pain relief on my first night because he decided not to come and allow me to have them and his response was the nurses never told him which was a lie as I heard Carol on the phone to him twice asking him to come down. Whilst attempting to take my blood he poked four holes in me and did a terrible job getting the blood as later on that day a nurse got the blood out straight away. I also had to have heparin injections in my stomach which were not exactly pleasant. The only thing that made my day better was my visit from friends and family where they gave me teddies, cards, chocolates and one of my best friends decided to bring a bag of random stuff including hot chocolates and marshmallows.

These were the four places the Doctor decided to violate my skin to get the blood...

A cute cuddly teddy that kept me company whilst in hospital from my friend Sage.

Fruit, coffee cake, Mags and flavoured water from my mum and sister.

The hospital dinners were not as bad as I thought they were going to be, the soup was always nice.

The rash all over my face, chest and neck and the drain with blood in the bottle.

The rash after having an antihistamine in the morning and dark circles due to lack of sleep from pain and those bloody bedside buzzers.

In the afternoon my skin looked a little better but neck and chest was still red, I was still very tired too.

2nd October

By the Wednesday I still had not slept because of the bedside buzzers constantly going off and was still getting the tummy injections and blood tests.  The nurse doing my blood tests this time must have been a student nurse as she had no idea, she was trying to take my blood for ten minutes wiggling the needle, taking it out and putting it in again as if I was a doll. Then she got a new bottle for the blood to go in and it flowed straight out of my arm. My blood pressure was still low as well as my calcium levels so I was put on calcium tablets. I was so fed up and bored I would just walk around the hospital so that I was not lay in bed all the time even if it was at the hospital entrance doors in my gown for a bit of fresh air. I would say hi to everyone to gain some kind of conversation which ended up getting me the nickname little voice for my stay in the hospital. I also met a young woman called Laura who I was able to have a conversation with and keep in contact with. That night Debbie a young nurse was on and she was lovely, she made sure I had everything I needed and was finally able to get a few hours sleep.

The nurses attempt at getting my blood.

3rd October

The day I finally got my drain out of my neck! It was starting to feel uncomfortable and I had under 20ml of blood drain out although in total there was about 140ml over my stay in hospital. When they was taking the tube out they had to take out the stitches attaching the tube to my neck and then told me to take three deep breathes. On the third they pulled it out and it went right round my neck. I could not breathe for a while after and it was painful. I am not going to lie, it was the worst experience I have had, I was in pain all over again when I thought it was getting better. It felt like someone had just cut your throat there and then but I was also not on any pain killers that day. Perhaps if I had taken my painkillers it would not have been as bad. My stomach was also hurting where the student nurse injected me wrong, she did not pinch the skin before injecting so I was left with a bruise and a lump in that bruise. The good new was I was finally allowed a proper shower! I was not able to have a shower because of the tube in my neck but the nurses allowed me to have one when it was removed.

Looking a lot better, not red any more.

So many blood tests :(

The one on the left was from the student nurse (bruise is bigger and darker now), the one on the right from a skilled nurse.

All nice and clean finally.

4th October- Finally time to leave the hospital

Being able to go home after being very bored and lonely was such a good feeling. Before being able to go I had to have my sutures removed which was not as bad as I thought, it was just an uncomfortable feeling. Unfortunately for me my surgeon had her own style of stitching so the nurses got confused as to how to remove them and ended up getting backup to help remove them. One nurse on either side working together to figure out the best way to get them out. After that was over and done with I filled out a survey, feed  back form and waited for my medication so I could be discharged. Whilst I waited I had my dinner which was nice, was like a chip shop lunch with mushy peas and chips. I left the hospital with a medicine bag which included my calcium tablets, liothyronine, ibuprofen, paracetamol and piriton. 

Stitches before removal.

Stitches after removal.

Chip shop lunch with soup.

After I was released I went and talked to a woman that works with Macmillan who is going to help me sort out my university work so I don't fail this year and if I have any questions I now have an advisor that I can ask and they will offer advice if I need it. In almost ever hospital there is a department for cancer patients that offers advice and other services.

Close up of stitches removed, put cream on as it was itching.

When I got home to pack a suitcase to stay with my mum for a few weeks my house mates had made me a home made card, it has all the things in it that I love. My pet rats, tea, cake and a top hat for the rats.I shall leave you with a few lovely images of this well thought out card:

If you have any questions or want to know anything I am happy to help. Just leave a comment and I will reply when I can.