So, your sick and now you got more sick? Updates and epiphanies

So, I'm sick. Like a 'normal' sick. Like a standard tonsillitis, SICK.
Now it makes me feel rather good, that I am just 'normal' sick again, just having a bacterial infection in my tonsils, you know normal sick. It sounds silly but its just nice to not have to worry about my thyroid, or hormones, or bloods or cancer related things... Now it didn't start this way. A panicked phone call on the 27th of December to the phone nurse at the Royal Marsden made me panic, she informed me I needed bloods to ensure that the white spots and swelling in my throat was tonsillitis and not some sort of horrible infection related to my radiation treatment or something more sinister somehow related to my cancer treatment. She instructed me to wait until the paracetamol and ibuprofen was out of my system before going to A and E to get a red blood cell check and then a diagnosis for my symptoms. After a LONG night at Charing Cross Hospital, I was informed it was a simple tonsillitis, to be treated with penicillin and lots of bed rest. WooHoo. But i'm just like hey, I'm already sick, why am i the one who's gotta get MORE sick.
This is my first time being 'sick' since my diagnosis. It feels strange. I know I am more susceptible than my neighbour when it comes to winter colds, bugs and flus, but I somehow thought I had got lucky and avoided getting 'sick'. However the holiday period, working 30-40 hours in a retail job and being around the public etc etc has lead to me succumbing to a winter bug. Unfortunately on top of this I have also developed ulcers all over my mouth again linked to being "run down". I can confirm its bloody awful. The period between xmas and new year is usually an odd blur however this year I've spent it chugging pills and force feeding myself soup in the hopes to return to normal health. Yes I understand it will take me a little longer than it would have 18 months ago, and I understand being a "cancer patient" my body is already under a lot of stress. My positivity is wavering however, I must push on, always!

And now, updates and epiphanies.
Sadly, my bloods are still not cooperating and my body is still like, oh hell no we aint gonna absorb no calcium no matter how many tablets you take, you just gotta suffer, yo. But seriously, my body has been in a whirlwind since my two surgeries and treatment earlier in the year. During thyroid surgery there is a risk that your parathyroid could be damaged and that will impact your bodies ability to absorb calcium. Calcium is important for your bones, skin, hair, nails, muscles and heart. So basically its pretty important. However no matter the dosage my blood calcium is not improving, and so I will need to see a specialist and change my drugs! GRR.
Two pieces of great news... My 3 month post radioactive iodine treatment check up was a success and they are happy with my progress. They use a blood test to detect the amount of thyroglobulin in my blood, a healthy normal person should have a stable level of thyroglobulin. Because mine is cancerous, we want mine to be medically undetectable in my blood. So far so good. I now have a 6 month wait for receive more tests and scans before I can class myself as 'cancer free'. Second piece of good news is that my genetics results came back and my thyroid cancer is NOT due to my genetics. This is GREAT news as it means my brothers, parents and cousins are not impacted by my cancer. Which is GREAT news, and I can stop wronging. Converse to this however it means my thyroid cancer was 'just bad luck'. Essentially. My geneticist at the Royal Marsden said more research is being done into thyroid cancer to see links and find the factors that contribute to it. For now I am left wondering, what it is I did (or didn't do) that lead to my diagnosis.

In terms of epiphanies, I just need to focus, calm down and slow down. As cringe and cliche as it sounds, over the holidays I have tried to appreciate every little thing. Earlier in the year I was worried that because I hadn't been working, I wouldn't be able to buy my family the christmas gifts they deserved. And I know it isn't all about presents, but when my family have done so much for me, they deserved the world. I was so thankful to be able to get back into work in November, I have loved every second of it. Even the most trivial task means a lot to me because months previous I was horizontal in bed unable to take care of myself post surgery. I want to remain thankful for ever chance I am given, I hope to carry my head high in the knowledge of knowing I am ready and capable for anything, big or small.
Further to this, I attended a group session at Maggies North London for young women with cancer. At this meeting I could talk freely and exchange stories with other young women. From this it helped me feel like I am not alone. The thoughts and frustrations I feel are similar to many other young people in my situation. Talking is key. Talking makes me feel normal.

For now, on wards and up wards!

Lets talk about cancer- Recovery and adjusting that they don't warn you about

When I started this blog, I aimed to write as honestly as I could about the journey of my thyroid cancer. I am writing this post to highlight something, that initially, I did not even think about nor realise the psychological impact of 'the C word'. Hopefully this blog post can start a conversation and support network- in simple terms- lets TALK about cancer.

On the day of my diagnosis, I was informed of the action plan to deal with my cancer. Firstly, more surgery, due to be around a month later. Secondly, radioactive iodine treatment, followed in September. And finally, drug treatment for the rest of my life, to allow me to function like a 'normal' human being (I started my daily dose of Thyroxine in August post completion thyroidectomy). Further to this the surgeon and nurse outlined the course of treatment from the Royal Marsden in Chelsea, involving constant monitoring with blood tests and appointments over the following 6 months. On paper- this all seems very simple and straightforward. A sort of step by step, lets beat cancer 'to do' list.

I have done detailed posts about this side of the treatment on my blog if you would like more in-depth information. What I am about to say by no means is criticising or belittling the treatment I have received from doctors and hospital etc but something I feel I really wished was focused on, or perhaps mentioned throughout the physical cancer treatment, would be the step by step 'to do list' on how to cope with this life change psychologically.

I want to put on a brave face. I want to show all those who have shown support to me over this time, that I have done them proud, and I am fighting day by day. It is time to admit, I have struggled. I have really struggled with facing the prospects of life recovering from cancer. The physical treatment is difficult, its forcing yourself through something, pretty crap, but knowing that on the other side it all gets a bit better. I wish I could say the same about the psychological recovery of it all.

The main issue I am facing is the fact that everything is different now. There is not one facet of my life that my cancer hasn't affected. My university life, my career, my post graduate life, traveling, relationships, monetary worries, health, my future, my families health etc etc. For me, in my head, the list of things go on and on. Yes we all understand that life after cancer is hard, the road to recovery is not easy nor is it a quick fix.

I do not want to show weakness. I want to use the emotions and experience I am going through to get people to talk about cancer, the recovery of cancer.  I am currently speaking to a psychologists at the Macmillan run Maggies cancer centre in west London. Talking about the problems I am facing almost seems to make them seem trivial. A problem shared really is a problem halved.

I have been speaking to my psychologist about the next steps. We both agreed that not enough emphasis has been put on the sort of 'returning to normal' phase of cancer recovery. We place so much importance on the hospital care, the drug care etc. For me, this adaptation period is extremely difficult. It puts strain on me and strain on relationships. One thing I would like to say on behalf of cancer patients, is the volatility of the emotions we are feeling. Some days I snap at those I love for no real reason other than I really want time to myself or that i'm 'sick of being sick'. Some days I feel so hopeless and helpless and I feel enough is enough, I just want to be me again. This causes a rift between my parents and I occasionally, as all they want to do is love and care for me. Sometimes our friends and family don't quite know what to say or what to do. I think the most important thing in this situation is communication. Its okay to say, leave me alone I'm feeling a bit poo, but equally its okay to say that you want some love and attention.

Communication is the most under-utilised outlet. With help from the psychologist of Maggies, we have been focusing on strategies and communication techniques that can help improve my transition 'back to normal'. For now I would just like to say, talk! Talk about cancer, talk about the recovery, talk about everything, talk about being positive and happy. But equally listen, listen and try to understand and grow and learn. The more we talk about things, the less taboo they become. By no means do I mean to imply that people with cancer/people affected by cancer need to be mollycoddled or treated differently, I just wish to highlight the ways we can all learn and grow and battle cancer together. For some more than half the battle is psychological, the more we talk about it, the better a solution can come of it.

I wish to do more posts about life adjusting to cancer, and now living with an auto-immune disease, my life relying on two little tablets taken every single day to make me 'normal'. Its a horrifying thought- thats probably why I've been struggling so much with the adjustment. Nothing will ever be the same (Dramatic Luce).

For now, general update, I am sort of in 'partial remission', aka continual blood tests and doctors appointments and waiting for my 3 month and then 9 month post radiation check-up scans etc before I can officially be 'Cancer Free'. Its a long and tedious game. I have returned to work, have landed myself a new job at Jack Wills part time to ease myself back into 'normal life'. I really hope to push myself and post more through this month. I want to give a really honest opinion about my adjustment back to being me!

After a shitty year I am determined to make this the best christmas ever. As ever, thank you to everyone for your continuing support, I dont know what I would do without you guys.

Getting to grips with my 'new normal'

It has now been a full month since my radioactive iodine treatment. This past month has been a bit hectic. Sadly a few days after leaving hospital, my Grandfather- Garfar as he was known to the grandchildren- had died. My dad picked me up on Thursday from hospital informing me he wasn't well, and sadly by the weekend he had passed. For me and my family this meant arranging a way to get us all across to Australia, both my parents are from Sydney and so all our family is over there. I called my nurse specialist to in form her I would be traveling to Australia in a week and asked if 1) I was allowed to go and 2) if there was anything different I needed to do when traveling.

The restrictions post radioactive treatment were lifted by the Sunday after coming out and I was able to travel a week later. I just needed to carry a letter that stated that I had undergone radioactive treatment on the 22/9 and that I was safe etc etc. The doctors appointment I attended a week post radiation informed me that my calcium was a little low but nothing to worry about unless I presented symptoms over the next few weeks, further to this they also checked my thyroxine dose and they were happy with my current dosage of 150mg.

As I'm sure many people know, Australia is VERY far away. For me it was a 6-7 hour flight to Dubai with a short layover and then another 15 hours to Sydney. This is a difficult journey even when you are fit and well. This journey is made even more difficult when you are taking medication over time zone changes and when your health is generally already a bit sub par. When you take thyroxine it needs to be taken on an empty stomach, further to this you cannot take any other drug/antibiotic/contraceptive pill within 4 hours of taking your thyroxine. Even further to this you cannot eat for another 30 minutes and they advise you not to have coffee/caffeine for a long period after taking it. Traveling is now a bit different for me, just one part of my new normal. I need to work out my meds and make sure I am being responsible in taking them to avoid feeling absolutely horrid.

The next few weeks in Sydney were amazing. I got some MUCH needed sun- topped up my vitamin D (which unfortmuately was not reflected in my blood upon arrival home but thats another story for another time!). Over the next few weeks I attempted to be as normal as possible. I was hanging around in the pool most days, walking along the beach everyday and being as active as my body would allow. I unfortunately started getting mind splitting headaches, felt nauseous, had muscles aches and tingles all over my body and such a strange pain in my neck around my scar that I was so dramatic and felt like crying.

Whilst in Sydney I attempted to swim again. One of my favourite places in the world, the North Sydney Olympic swimming pool- its a 50m pool directly under the Sydney Harbour Bridge, definitely worth a google. I also was walking around sight seeing, so I would walk around 5-10 miles some days too. Which I LOVED, walking around Sydney is one of my favourite things and took me back to gap year memories. These days often results in me feeling utterly awful with bad headaches and feeling weak and in need of some pain relief. This was extremely frustrating. I am the most active person, so they fact I felt so terrible after attempting to be my normal self- sucked.

Fast forward to Friday when I arrived home from traveling. I get in at 7am, again after 25 hours of traveling and an over night flight and feeling generally meh. Usually I'd go home and relax most of the day and get my energy back. Unfortunately I had to rush straight to the Royal Marsden to get yet more blood tests. Following this, at around 3pm, the results of the blood tests showed I was really low in calcium. This has a knock on effect and they believe it lead to the symptoms I was experiencing.

We as humans need calcium to
- help build strong teeth and bones
- regulate muscles contractions, including heartbeat
- ensure that blood clots normally

From here they asked me to return to the Royal Marsden and collect some 'emergency' calcium pills to begin taking immediately. I have now been taking them since Friday and am feeling marginally better, the jet-lag didn't help how crap I felt. I am now waiting on yet more appointments and bloods and tests and things.

This is just all part of my new normal. Adjusting to having a 'chronic illness' has proved difficult, I was warned that getting meds, bloods and drugs under control could take 6-12 months. It is a slow and painfully frustrating process. I get blood tests, I get told from a doctor what the next step is. This process will be repeated a lot more over the next few months. My symptoms are all over the place. For me now I am not only fighting the cancer but I am adapting to living with a chronic illness. Unfortunately this is something usually overlooked when we discuss cancer. Most cancers come with a lifelong weight of doctors and drugs and things just to keep us 'normal'. I am working on a sort of 'open letter' where I inform people of the realities of living with a thyroid condition. The media has distorted a lot of the facts and I want to inform people and educate people, if we make a bit more noise about thyroid conditions, the NHS and media will have to listen.

For now I am just chilling and getting on with it. Its a tedious process and I do unfortunately still have symptoms that make leading a normal life a bit difficult. On the bright side, my father has entered me in a local competition, to find the 'most inspirational person in Putney'. His nomination and information on how to vote can be found bellow. The winner will receive a £750 donation in their name to a charity of their choice. Along with this any publicity of my blog/thyroid cancer/cancer in young people would just be amazing. Awareness and understanding is the key to success.

http://www.putneyexchange.co.uk/whats-on/vote-for-your-putneyip-winner/

Thank you for your continuing support!

Radioactive Iodine Treatment!

Hi everyone! Welcome back to my blog! I have a quick update now I have finished my Radioactive Ablation Iodine treatment!

The Royal Marsden, Sutton. Me in hospital in my gown!

I had my completion thyroidectomy on the 17^th of August, followed by my appointments at the Royal Marsden Hospital in Chelsea in early September. They outlined my treatment for the radiation, I had yet MORE blood tests and x-ray and ultrasound just to make sure everything was in order.

On Sunday the 20/9 I went to the royal Marsden in Chelsea again to receive my concentrated TSH injection. I BELIEVE this is so the T3 and T4 levels reduce in accordance with the raised TSH as this then stops the thyroid hormone being utilized in the body once its ‘radioactive’… I THINK that’s why. It was in my left butt cheek and was painless. You need to take a second TSH injection 24 hours after (I had mine on Monday morning) the first injection with the idea that 48 hours after your first injection you receive your radioactive iodine.

Tuesday 22/9 i arrived at the Royal Marsden Sutton hospital with my parents. On arrival I needed to take two blood tests before being admitted to the ward. Once on the Smitters ward I met with the doctors who would be in charge of my radiation. Either a pill or a liquid could take the form of radiation I was receiving, it’s a controlled dose of radiation that was meant to kill the remaining microscopic thyroid cells as well as kill any remaining cancer cells. With thyroid cancer research has discovered that the thyroid gland absorbs iodine from your diet, and so if we make the iodine radioactive, it can kill the cancer locally and it means you are unlikely to need chemotherapy.

I received my liquid dose of radioactive iodine on Tuesday afternoon. It was presented to me in a huge metal container and the doctor had special gloves on and had to touch the bottle and the straw with large tweezers, as she was not able to touch it. I drank it all, it sort of had a taste, but just like water that had gone a bit funny. From there I was left alone. Doctors and family members had to stand behind a lead screen and the room itself was lead lined with a Geiger counter in the ceiling to take readings of how ‘radioactive’ I was. My ipad and phone were wrapped in cling film to stop any radiation transferring and I was warned the majority of things I bought in would need to be destroyed or checked for radiation on discharge.

Once radioactive all my food was bought to me and left on the lead barrier. I was also in charge of stripping my bed every morning and my PJs after I showered, they needed to be put into a special brown bag to then be taken care of properly by the doctors. I was instructed to shower everyday at least once and to drink as much water as I could, around 3-5L. This was so I would go to the loo frequently, and in the simplest terms, to wee out the radiation!

There is no simple way to describe being in hospital in isolation. It is the strangest and most boring thing ever. I can’t complain! I am lucky enough that the treatment for my cancer is so available and seemingly straightforward. For most of the day I lay in bed or read my book or slept! Just being in hospital is a bit of a dampening experience. Luckily my parents and friends could visit however they were limited to around 30 minutes and they had to sit behind the lead screen. By Thursday I really was just sick of being in hospital! Whilst in hospital, I would been checked on many times a day. I was instructed to lie flat on my back and then flat on my tummy as the Geiger counter in the ceiling took my readings of radiation. Once it was low enough I would be taken for a full body scan.

On Thursday, my radiation was reducing dramatically and around mid morning I was taken from my room to the radiology department where I received a full body scan to detect the radiation in my body. They were expecting that the radiation would be localised to my neck area with tiny traces in my bladder, bowels etc to show that it had been expelling from my body through secretions. The scan was quite uncomfortable. For around an hour I had to lie on the machine with my arms bound to my side and my legs tapped together so I did not move. The camera of the machine came so close to my face and it slowly scanned from my around my head and then along my body. It was a strange experience.

By Thursday afternoon, the doctors who talked me through the limitations I would have because of my radiation came to see me. The limitations included staying away from pregnant women or children under 16 for 4 days after my discharge. Luckily I could hug my family and be with my boyfriend with no troubles at all! Which was a relief because all I wanted was a hug to feel better!

Following this treatment I had a follow up a few weeks later to discuss the results of my scan. I also received a few more blood tests as my calcium levels are all over the place at this moment in time. This is a normal reaction post thyroidectomy. They suggested we would need to medicate my calcium and vitamin D if it did not level off in the next coming weeks. I still have lots of appointments and blood tests over the next 3 months but I am well on the road to full recovery. The doctors have stated I will need another full scan in around 8 months to check for the cancer in my body, and hopefully there will be no more!

Thanks for reading,

Please get in touch with any questions, comments or anything!

SCIENCE WITH LUCE!

its amazing how much you suddenly care about science and biology when its in regards to your health isn’t it? 

In this video I look into, briefly and simply, into the thyroid gland and its hormones! This is my first sort of raising awareness post, I think the more we know the better care we can take of ourselves. 

The pituitary and thyroid gland sort of work hand in hand to control these things in your body via the use of hormones! The pituitary gland releases TSH which is thyroid stimulating hormones. The release of THS into the blood steam causes the thyroid gland to release T3 and T4.

The thyroid gland is an example of a negative feedback mechanisms- the release of THS into the bloodstream is linked to the amount of T3 and T4 is detected in the blood steam. So too much thyroid hormone detected by the pituitary gland causes less THS to be released, too little thyroid hormone, the more THS is released.   

Your thyroid gland uses iodine, from food intake, to make 2 hormones, T3 and T4.

So why does the body need iodine? The body makes use of iodine from the food we eat to make thyroid hormones, if iodine is not available in diet then the thyroid may produce an insufficient amount of the hormone!

PLEASE WATCH, SHARE, SUBSCRIBE and PLEASE ENJOY MY VIDEO! a little science lesson from me to you!