Thursday, 29 October 2015

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.

Thank you for your continuing support!

Monday, 12 October 2015

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 17th 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!