Once diagnosed many people ask how you cope. Looking back now I am not sure how I passed the time leading up to my surgery. I think it was the support of others alongside the shock and tunnel vision of attending each scan and appointment as instructed, taking each day at a time. My lump was getting bigger, or at least it seemed like it was getting bigger- your mind tends to plays tricks on you. One day I was certain the melanoma had spread to my chest as I couldn't breathe without wheezing, the next I was panicking it was in my brain because I had a headache, you loose all sense of rationale and you have to tell yourself to get a grip and stay positive. The main reason you get through is because there is no other choice and sometimes I have often felt its harder for those around you, because they feel helpless, they want to take your pain away and they can't.
Attending the scans was OK, to be honest they gave me something to focus on, the MRI brain appointment came through within two days. Lying on the long bed with a large, chunky polo shaped machine at the end, you are positioned and fed into the machine. It was noisy, lots of loud clanging and you had to lie really still, half way through the scan you are injected with a fluid, it doesn't hurt only feels like a light nail scratch. I felt OK afterwards, perhaps a little dazed from the loud noises.
In between the two scans I received a call from Jaye on Wednesday morning to see how I was getting on. The Macmillan nurses are incredibly conscious of you as a person and are there for more than just medical support, they become like a friend and help you through every step of the process. Jaye tells me in her calm, reassuring voice that if both the scans show no sign of spread the operation will move forward a week to the 6th November; it was perfectly timed because it gave me more fight. I was exhausted and emotionally drained, but to know that within a week I could be led in recovery gave me a boost that helped me through the following 48 hours.
My second scan was a PET scan to give a detailed 3D scan of my whole body, this took place Wednesday afternoon up in Cheltenham at a charity called Colbalt, which is one of two or three PET scanners located outside of London, set up to help people access the service without long journeys into the Capital. My PET scan involved a radioactive injection at the start, then being taken to a raised bed to lie down for an hour, so the radioactive fluid can feed through and settle in your body, it provides a detailed picture that would highlight any visible spread of melanoma. The injection didn't make me feel any different, I just took advantage of the free bed and drifted off to sleep. Once I woke around an hour later and was taken into the scanner, this time it looked like two large chunky polos, one in front of the other, you are led down arms side by side and fed through. It was cold in the room and you can't move for half an hour, which for me was torture.
After the second scan we began the waiting game, it was a Wednesday, the radiographer told me he would try to get my results over to Dr. A by Friday, if he couldn't due to half term, it would be the following Monday. I told the radiographer that my surgery would be moved forward a week early if the results were in and clear by the Friday. I pulled at his heart strings the same way mine had been the previous 7 days. I needed this operation and I didn't want to wait any longer than I had to, with an understanding look in his eyes he nodded his head and showed me the way out.
That night I began to consider what would happen to me if the results showed spread of disease, if I had to go for some form of chemo to kill it, I would, there was no question, this inevitably could mean loosing my hair. At the time this didn't phase me like I thought it would, I accepted how I looked might change. However I, like many other girls can be quite conscious of my appearance and I personally always loved having long hair. I looked into whether I could potentially cover the evidence of any hair loss using a wig, or should I stand for something more and be one of those brave, beautiful women walking down the street with no hair, accept what was happening and embrace it. Everyone deals with these sorts of feelings differently and there is no right or wrong way. The NHS offer funding for a wig using real human hair, up to £250 for those who are undergoing treatment. So I found a website and chose mine, just incase I needed to, then in my own time I could get used to the change. I began to wonder what this would do to my confidence, would Mark still find me attractive? All these things are small yet prominent worries you experience as you come to grips with a life you begin to feel isn't yours anymore. It's a life being controlled by an illness and you have to claw every part of it back so it doesn't spiral out of control, taking each day as it comes. Perhaps I was thinking too far ahead, I knew I was panicking, I certainly didn't feel attractive or pretty when I found out I had cancer, I didn't feel like myself when I looked in the mirror. I had lost almost a stone, which normally to us girls would be great but I felt weak. I always wondered if people still saw the same Jen when they looked at me. I later learned that they did and in time I began to feel better about myself.
I had two nights during this time period where I cried uncontrollably at night, both times were around 2am when your mind isn't your own, the dread becomes worse and your mind is in overdrive. Mark would wake to hear me sobbing and would slowly tell me everything was going to be ok until I drifted back to sleep. Surprisingly a good cry actually helped, it released a lot of worry and reminded me that I am only human. It's ok to cry. I probably cried no more than 5 times in the space of 8 days, I refused to let this stupid cancer make me seem weak. I could have cried a lot more but sometimes it's easier to bury it. Looking back I wish I had cried more, as for me it only came out at a later date.
I was incredibly fortunate that I received both my scans and results within 8 days, perhaps Dr. A amongst others knew we were against the clock. First results came back Thursday night when I rang my Macmillan nurse to ask if I would need to come in and get the results on the Friday, or would they call. My nurse told stopped me in my tracks and told me there and then the MRI was clear and there was no spread to my brain, my knees went weak and the headache I had been panicking about lifted from my forehead. I'm clear in my head, I'm clear in my head...COME ON! In a whirlwind I thank her, I wasn't expecting to hear the news that night but I was so glad I did...up yours cancer! I tell Mark and he jumps out of his seat, dancing and celebrating, doing a little jig, I'm not quite sure what that jig is, but it usually means he's happy.
As I slowly came back down to earth Jaye informs me she will call me the next morning with the body scan results, this is still a big, ugly hurdle, one that I have to jump to get the operation. Jaye tells me she has a meeting first thing so she will call either before 9am or after 12:30pm. Mark and I both go to sleep that night and you can tell we are both thinking the same thing, is it not found in my brain because its somewhere else, had they learned something more from the final scan but actually can't tell us until Friday, do they know something we don't? It is quite difficult to accept that people will often learn your fate before you.
I wake up Friday morning, 2nd November, its been 8 long days since I was told I have melanoma and I'm now pacing around the house. The call hasn't come from Jaye by 9am so Mark goes to do some work for a few hours. I sit and I wait, I think about how I am going to tell people if its bad news, if its spread, with that the door goes, the dog goes wild and in walks Mark's Mum, Val, she's passing by and stops to have a coffee. We sit to chat about the results and how I've got to wait until 12:30pm as Jaye my nurse is currently in a meeting. With that the phone rings and my heart jumps up into my throat, Val looks at me and I look at Val, we then both look at the phone. I freeze because part of me doesn't want to pick it up. Val shouts..."Well go on, answer it..!"
"Jen its, Jaye, its all OK, you're all clear, it hasn't spread!"
...Oh...My...God!
Val stares at me and her eyes well up, I burst into tears, holding the phone and nodding at Val, she nods back at me crying, without a clue if my nod means yes it has spread, or yes I'm clear.
"I'm OK!" I shout to Val, sobbing, "Thank you so much Jaye!"
"See you for your pre op check up on Monday ready for surgery Wednesday, we're moving it forward a week, well done Jen!" Jaye says.
Val throws her arms around me and with that, I breathe and realise that my body has done the unthinkable and has cornered this vile disease and pocketed it away somewhere to save me, my operation can go ahead and I can say goodbye to this nightmare. Some people in my position aren't so fortunate and while I was elated I felt a huge sense of guilt and pain for those who couldn't dodge the bullet that I did, those who didn't get the good phone call.
I tell my family and friends that its good news and amongst tears from Mum and a few swear words from Dad, we laugh emotionally, we've jumped the first hurdle. My phone erupts into celebration, the melanoma has not gone, but it sure hasn't got me completely and at that point in time that was all the news we needed, we are finally in control and the count down to my surgery began there.
