New Life, New Normal
Andrea Shelbourn
Diagnosis: Sporadic Medullary Thyroid Cancer
Initial Symptoms: Swollen lymph node
Treatment: Surgery, Radiotherapy
Special Focus: Advanced disease, Frequent visits, Social Support
“It’s bad news I’m afraid…You have thyroid cancer.” Those were the words that came tumbling out of the consultant’s mouth. Strangely, it didn’t come as the massive shock you might imagine to this 41-year-old.
Almost 5 years previous, I had gone to the doctor’s with a swollen lymph node in my neck. On examination, he had decided it was fine, and he instructed me to “keep an eye on it”. I had mentioned it to several other doctors over the 4 plus years that followed, and all came to the same conclusion. “Nothing to worry about.” So, I didn’t. I carried on with my life in the bliss of ignorance.
Then in the July of 2014 my lump was joined by a friend, a new lump. I went to visit a new doctor who was very thorough indeed, he did countless blood tests, but couldn’t find anything wrong, so he decided to refer me to the hospital as he was all out of ideas! I met the first of many consultants. He too said it was nothing to worry about. The doctor and consultant did keep asking me about night sweats, weight loss and itching, I had none of these symptoms; in fact, I felt just fine! I had a biopsy and an ultrasound done and when I got home, I did what any doctor will tell you not to do, I started to google. Limited options for swollen lymph nodes, tends to be either cancer or infection, seeing as I’d had it 5 years, infection was unlikely so on googling including the night sweats, weight loss and itching, which I didn’t have, I decided I had non-Hodgkin’s lymphoma.
My reply to those immortal words “you have thyroid cancer” weren’t those of breaking down in tears, or getting angry or an outpouring of emotion in any way really, but instead I calmly replied, “Oh, I haven’t googled that!”. He told me it was very rare, and my treatment would take place in a specialist hospital in X, about an hour’s drive away and that was that. I walked out of the room with my husband Paul, hand in hand, in silence. I can’t put into words my feelings at that point, just numb.
Entering a world of the unknown
My whole life’s plan had changed in an instant. I was about to embark on the biggest fight of my life, I was entering a world of the unknown.
And I didn’t like it.
When my two gorgeous boys came in from school, Ben, aged 14 at the time, and Thomas, aged 12, we told them straight away. We’ve always been a close-knit family unit, we’ve never had secrets, and everything has always been honest and open. They were unsurprisingly upset, and we all had a good cry. We decided to call the tumour Bernard, just seemed like a more lighthearted way to talk about this very serious matter. I think that for me, this was one of the few times I have cried (except actually whilst writing this! I’ve been blubbing the whole time whilst I’ve been typing this. I guess that proves it comes straight from the heart). You may be misled at this point to thinking I am naturally quite an unemotional person whereas in fact I’m the opposite. I’ve always liked a good cry. I never miss an opportunity! But somehow this situation was different, I almost felt like crying was like letting Bernard win and I certainly am not going down without a fight!
Thomas is very open with his thoughts and emotions and his first question was, “Are you going to die?” I replied that I didn’t intend on dying yet! But naturally, it has been a constant thought in my head, the possibilities of leaving my boys behind without a mummy and being denied the future I’d planned with Paul, all the things we were going to do and places we were going to visit as we grew old together. It just all seemed so unfair for all of us. I told my best friend via a text whilst still in the hospital. She isn’t a touchy-feely emotional person at all, but even she spent the afternoon crying. I decided after that to tell everyone by text, that way I didn’t have to witness the crying or despair in their faces. I did stipulate on every text I didn’t want pity or sympathy, as I’ve never got on well with it.
My doctor tried it once at the very beginning, I told him off! He’s never done it again. I need facts not fluffiness! My family and friends were all amazing. I was incredibly well supported and felt so loved and cared for. I think Paul has probably felt the most helpless in all this, he was going through this huge rollercoaster of emotion with me and yet he was forgotten about whilst I sat firmly in the limelight. Through all this, he has been my rock, I could never ask for anything more, he’s spent countless hours waiting whilst I’ve had scans and tests done, he never moans, just holds my hand and hugs me when it’s over. Our endless love for each other alone will get us through this. He has asked the question, “Why you?” many times; to that there is no answer other than, “Why not me?” My dearest mum endured ovarian cancer at 52 and breast cancer at 75. I’m sure she never asked that question. She just accepted the hand life had dealt her and battled against it. Likewise, my darling dad had a massive brain hemorrhage at 48. Next year, against all the odds they both will celebrate their 80th birthdays. My parents are my inspiration. I definitely come from a family of tough cookies.
I had a CT and an MRI scan and then went to see my new consultant in Oxford. He said it looked like it was all contained in my neck and hopefully they’d be able to remove it all and that would be that (If only!). I had my operation on the 23rd of January this year. Foolishly I’d googled it and wished I hadn’t! Thomas had asked me the morning before, how many people a year die under general anesthesia? I said google it and tell me after, when I’m not one of the statistics! Although he also said he wanted my thyroid and Bernard bought home in a jar! The operation went ok although the findings were worse than my scan had shown. I ended up having my jugular removed (always thought it is a vital part of a neck, but evidently not!). A full thyroidectomy and radical neck dissection, I had 30 lymph nodes removed of which 16 were cancerous and my laryngeal nerve was cut and re-stitched. I’m due to start radiotherapy very soon, but the cancer has unfortunately also appeared on my spine, so as I’m writing this, I’m waiting to see what the next move after radiotherapy in this very complex treatment game is.
Strength and support
I was very lucky to have stumbled across my fellow “meddies” on Facebook, Medullary being so rare. Finding out anything about it is a challenge, let alone actually meeting someone who has it. They answered so many questions that I didn’t even think of asking. It was a bit of a double edged sword though, one day I would read something really positive and I’d feel really upbeat, and then another day I’d read something much harder to take, like the passing of a fellow meddie, and I’d be catapulted into the pits of despair for a while.
This has certainly opened my eyes to what really matters. In life you just plod along getting on with things and then one day you realize you’re old and the children have grown up and you haven’t done all those things you were going to do. This has made me appreciate every single day with my amazing family.
So, for the moment at least, I’m living this new life. A new normal. Not the carefree one I’m used to. A cancer bubble if you like. A seemingly endless cycle of doctors’ appointments, blood tests and scans. Every hospital appointment is like a rollercoaster, jump on board the anxiety train up to the appointment, then, depending on the news, misery or elation after. I’ve endured things that a few years ago I would never have believed possible, like having my radiotherapy mask fitted.
I am a much stronger person than I ever imagined I could be. The doctor warned me of “dark days”. I think I’ve been lucky, as both Paul and I have had dark moments, but luckily not at the same time, and we have managed to snap each other out of it. At the end of the day, life’s too short to waste any moments worrying about something that you can’t change. I’ve heard the words, “You’re so brave” quite a bit. One of my fellow cancer survivors said it was because people think in your situation they would never cope. But they would. You have to. There is no other choice. In the face of adversity, you deal with whatever’s thrown at you. Cancer is not going to break me. Cancer is not going to beat me.
All I can say is, “F**k you cancer, you chose to mess with the wrong girl! I WILL BEAT YOU!”
So far I have learned that there is no room for second-guessing. Go forth and gather the best information to make the best decisions (regarding treatment) and move on. Do not look back. And never ask yourself, "Should I have...?" or "What if?"
