Thank you for taking the time to visit my JustGiving page for our TANDEMONIUM challenge. I've never been on a tandem before so it could be interesting/amusing...
Jake Coates and I are embarking on a 2000km tandem cycling challenge from London to Copenhagen, via Brussels and Amsterdam, along the North Sea Cycle Route this June. I am doing this because I was recently diagnosed with a rare form of cancer which presented in a very unusual way. We all know of someone, or someone's relative, who has been affected by the big C and we are all becoming increasingly aware of what signs and symptoms to look out for. I however want to raise awareness of some of the more unusual symptoms of cancer and I hope to do this by sharing my story with you; highlighting all of the trials and tribulations I encountered prior to being given the diagnosis . I find it quite scary how long I had lived with it completely unaware and being made to feel like I was going totally bonkers!! If only I could have caught it earlier, things could be very different now.
Most of us have had some sort of experience with the bitch cancer, here's my story......
Me and Jake
My ‘school girl crush’ on Jake started almost 20 years ago when we were just 11 years old. We quickly became ‘childhood sweethearts’ and at 13 he told me that I was ‘his lobster’. When we were 16 we finally grew the balls to fully admit our feelings for each other and we dated for 3 years. Although at University we went our separate ways, we remained close, but it took until October last year, after 10 long years, to rekindle our romance. He was living in Australia working as a doctor at the time and I was living in London working as a primary school teacher. We negotiated the time difference and ‘facetimed' daily, travelled (the short distance!) back and forth, and by the new year we were planning a life together back in the UK; a life we had always dreamed of together was finally coming true. Unbeknownst to me, Jake had planned to propose to me on a holiday to the Philippines in March. However it was the day we were due to travel that I received the heartbreaking news that the thyroid cancer had spread and I was advised not to fly. Jake promptly proposed the next day, in bed with a cup of tea…it was perfect!
Given the circumstances and a new outlook on life we thought ‘why wait’ and I will be walking down the aisle to meet him on September 3rd 2016.
I have always thought of myself as being an active, fit and healthy person. I enjoy various sports, going to the gym and have run a couple of marathons in the last three years. However about 18 months ago I began to experience symptoms which affected me whilst exercising. I felt tired all of the time, had irregular bowel habits which were often painful, and frequently felt quite severe, unexplained muscle aches and pains in my tummy and back. There was often blood on the toilet paper and it felt like I had glass in my bottom! Despite being someone who avoids going to the GP, I visited the doctors several times only to be told I probably had IBS, norovirus or perhaps 'stress' ...I KNEW it was neither of those things and I certainly never felt stressed. Whilst competing in last years London marathon, training was very difficult due to the pains being more severe and my symptoms deteriorating. By the end of the year my symptoms were getting increasingly more difficult to live with but despite this, my case was still not taken particularly seriously by the GP, who suggested that I come back after Christmas if the symptoms persisted. I felt totally deflated, like a hypercondriac and I must be imagining it all. I didn't dare go back to the GP for another few months. it was only when doctor Jake and I spoke over FaceTime, whilst he was in Oz, that he listened and built up my confidence. After seeing each other in February, when he noticed that my lymph nodes were very enlarged (I had assumed these were just muscle knots) he forced me to go back to the GP and told me what I should say. The GP rushed me into A&E immediately, where I was referred for an urgent neck biopsy and was given the initial diagnosis of likely Medullary Thyroid Cancer. It has since been revealed that I have probably had the cancer for potentially 2 years! Although it sounds absurd, it was almost a relief receiving the diagnosis, I felt I could fight and treat the illness. The worst feeling was knowing something was wrong but not being able to do anything about it.
On 22nd March I was diagnosed with medullary thyroid cancer at St. George's Hospital via a neck biopsy. Jake immediately flew back from Australia to be by my side and I quite simply don't know what I would have done without him from this point. Despite the diagnosis, I remained positive, unaware the cancer had spread and was determined to go on holiday to the Philippines with my lobster! On 31st March, the day we were due to fly, I developed severe chest pain in the night. We went straight to A&E (again) where I had a CT scan which revealed that the cancer had already spread into my spine, lungs, liver and bones and the chest pain was due to a fractured rib caused by the cancer. It was at this point we learnt that the disease had become so advanced that it is now unfortunately incurable. This was a tough time, because after receiving this diagnosis, we were given no further information or plan of action as it was a four day bank holiday weekend. However, after an agonising wait, we were invited to attend a multi disciplinary team meeting at St. George’s Hospital. Here it was explained to us that my longstanding bowel problems were due to the extremely high level of the hormone, calcitonin, secreted from the cancer cells. An average person has a calcitonin level of less than 10, whereas mine at this point was almost at 12000. I was needing to empty my bowel every 15 minutes day and night which was having a severe impact on my quality of life including extreme fatigue, a fissured and blistered anus, weight loss and erratic menstruation. After this meeting my case was transferred to the Royal Marsden Hospital.
Prognosis and outlook
My case is particularly rare, with only 300 cases in the UK over the last 12 years and I am one of the youngest ever reported. They have therefore taken my DNA to continue to investigate in the labs any future treatments that could possibly become available, I even have my very own little lab mouse! There is only currently one form of treatment for this type of cancer; a daily oral chemotherapy drug called Vandetanib which did not even exist 5 years ago, and although this drug cannot cure the disease there is a good chance that it may slow it down. Although I will be on this medication life long, my prognosis is still rather dire. I have stage 4 disease meaning I have a 20% chance of living 5 years, however I remain optimistic, that with all of the research being undertaken by the Royal Marsden, that there is still lots of hope for new drugs and treatment in the future!
Due to the teratogenicity of the drug, sadly it is not possible for me to ever carry a baby. This news for me was almost more devastating than the actual diagnosis as being a mummy is all I have ever wanted. Therefore our only option of ever having our own child was to undergo fertility treatment; to harvest my eggs, Jake's little swimmers and we fortunately were able to freeze 9 embryos which potentially could be used with a surrogate in the future.
Although all of this news has been a shock and challenging at times, it has also made me realise how important and precious every day is and to enjoy and treasure every moment.
Due to symptoms, fatigue and daily hospital appointments, I have not been able to exercise for quite sometime and so am horribly unfit. At this stage we also don't know how I will be reacting to the chemotherapy which could make the cycle more tricky. Despite this we will be racking up the miles during the challenge. Fortunately (praise the lord!!) I have ultra marathon running extraordinaire Jake in the front saddle, so I'm hoping that I can secretly put my feet up and enjoy the scenery from time to time. I know that I am incredibly lucky and privileged to be able to experience this adventure and to raise lots of money for an incredible cause in the process. We will keep you updated during the adventure with regular messages, photos and videos. I want to say a MAHOUSSIVE thank you to everyone for such tremendous support and kindness. Believe it or not I am happier than ever. Love truly is the best drug and I have been totally smothered in it. I am the luckiest lady in the world to be surrounded by so many sensational people. It is true that you never know what is around the corner, I feel so positive and so blessed and I have never had such a boost to live every day to the full...to smile, to love and to be kind.
The Royal Marsden is a remarkable institution at the forefront of cancer research and care who have and continue to help me and many others inflicted with cancer. They treat everyone as a VIP and everything is done efficiently, with urgency and at the optimum level. I am incredibly lucky to have a specialist oncologist and specialist nurse leading my case who are just phenomenal in every way. I hope that my story can give others enormous hope and emphasises the importance and value of the research undertaken by the hospital. I feel so very blessed to have an opportunity to hopefully prevent anyone else finding themselves in a similar situation. I hope that I can continue to reinforce the message to have faith in your mind and body and trust in yourself. If in doubt don't give up, get a second opinion...and then another and another!
Thank you in advance for every single penny donated. It absolutely means the world to me and will do to many others on a similar journey.
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