Wednesday, 30 December 2015

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!

Wednesday, 2 December 2015

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.