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!

1 comment:

  1. Thank you for writing this! I am 23 and just had my thyroidectomy in June; one of the most difficult things I am dealing with is feeling healthy. Mentally, this is all quite hard to deal with but it is nice to knowI am not alone in my feelings especially when we are both so young. Hope all is well with your journey.