Diagnosis to Surgery – the everlasting two weeks

Within a week or two of seeing the GP the hospital appointment came through. Monday, 28th April, I was to report to the Outpatients Clinic to see a Dr Clayton from the Dermatology Department. The appointment letter said that other investigations may be needed on the same day, so I organised for my mum to pick Joe up from school and Andy, my partner at the time, and I went up ready for a day of sitting around.
When we got to the reception to check in they confirmed my contact details and told me to sit and wait. There was hardly anyone in there so I was confident this wasn’t going to take long and before I knew it, I was on Dr Clayton's couch and she was examining the lump. By this stage the lump was becoming tender because I kept feeling it everyday to make sure it had grown.

I gave her the spiel about the pain in the groin I’d been suffering from since the previous November and how I seemed to have made it worse since helping mum move house. I told her that I’d had my groin scanned in February to rule out an Ovarian Cyst and that the results were negative.

“Well, I’m fairly confident it’s not a lymph node because of its position. I think you possibly have blood pooling on the muscle, but we’ll run some blood tests and send you down for an ultrasound scan just to be on the safe side”.

She seemed fairly confident that it was nothing and that I was to have the blood test and ultrasound scan today and that she would contact me in a week or so when all the results had come back.

I felt myself sigh with relief because secretly inside I had a nagging feeling that something wasn’t right. It had started about October last year, before the groin discomfort had started. Since having that Neurological Disorder in 1998 I had become very intuitive when it came to my body. I always knew when something wasn’t right and that had become my way of keeping that at bay. But this time I had been feeling that something wasn’t right for a while. I could never put my finger on it. I wasn’t being sick or feeling sick but I just didn’t feel well and this nagging feeling wouldn’t go away. I had actually put it down to Reflexology.

I had been studying Reflexology alongside Beauty Therapy and every week we would practice on each other. Reflexology is known for being excellent for clearing out blockages and I thought the treatment had just shifted a load of toxins which was making me feel out of whack. Also, because Andy and I were trying for a baby, the other students would give the reproduction area a little extra work in hopes of activating the ovaries. One girl had actually become pregnant while we were on the course! Strange thing was though, back to the intuition thing, every week when it was my turn to jump on the couch a little voice in my head would be telling me that this wasn’t right.

So I went off to have the blood tests first. Needles have never bothered me and as I sat there watching her taking the bloods and sticking labels on the tubes, I realised she had the wrong contact details. The receptionist at Outpatients had checked that my address and phone numbers were correct on the computer but hadn’t checked the labels in the back of the folder. So it was back down to Outpatients to make sure all the labels she’d already used were correct. I remember thinking thank god it’s not anything serious because they would’ve never been able to contact me.

The x-ray department was packed! Every chair was full and there was some sign about the schedule running behind by 45 minutes. They weren’t even sure that they were going to be able to scan me that day, but fortunately they squeezed me in. When the first seat came available I sat down and Andy went and got us coffee and muffins. It was about 40 minutes or so when I was called in and I was chuffed because it was Matt. He’d scanned me for the suspected ovarian cyst, so it felt right to be seeing him again.

As I dropped my trousers and got on the bed Matt said,

“I wouldn’t worry too much. Sometimes swollen lymph nodes can be caused by Athletes Foot”

“Oh I’m not worried at all” I replied thinking what a weird thing that was to say. Dr Clayton seemed confident it was blood pooling on the muscle, what was he on about? And that was when I saw his face change. Since working in the operating theatre you get to read Doctors faces quite well. You always knew when someone’s outcome was fine and when someone’s wasn’t. And by the look on Matt’s face as he adjusted the screen, I could see that mine wasn’t.

“So much for the Athletes Foot” I joked, hoping I was reading him wrong.

“Hmm” that’s it. That was all he said until he finished tapping away at the monitor. I knew this was serious then.

“What did the consultant say to do once you had the scan?” he asked as I was putting my trousers back on.

I explained that she just said to go home and that she would contact me in a week or so with the results of the tests.

“Well, I don’t like the look of this and it really shouldn’t be left any longer and I think it should be removed immediately. Return to your seat in the waiting room while I’ll give her a ring”

“What do you think it is then?” I asked, even though I knew exactly what he was going to say, I just needed to hear him say it. Just in case there was the slightest chance we were thinking different things.

“It looks to me as if a couple of lymph nodes are affected and I think they should be dealt with immediately”

I felt myself start to tremble as I returned to the waiting room. Andy took one look at my face and knew something was wrong. I told him what Matt had said and we both sat there in silence staring at the floor. I heard my name mentioned a couple of times and looked up to see Matt on the phone, apparently talking to Dr Clayton.

“She said it was blood pooling on the muscle and now he reckons it’s urgent and should be removed immediately. I’ve just eaten a muffin!” I mumbled to Andy.

I hadn’t hit the cancer bit yet, all I could think of was that I couldn’t have surgery today because I’m a greedy cow and I ate a muffin. It was already about 3pm, there was no way they would give me surgery today. We carried on the silence then until Matt called me again. I thought we were going to go back to the exam room but right there and then in the middle of the packed out waiting room he said it...

“I’ve got a hold of Dr Clayton and told her that I don’t like the look of the lymph node and that it should be dealt with immediately but she wants to wait for the blood results as well and discuss it with her team. So I strongly recommend that if you haven’t received an appointment to have it removed by the end of the week, you contact me and I will chase them up for you. It really shouldn’t be left any longer”

With that the whole waiting room looked up and stared at me as if the Grim-reaper was standing behind me. Andy’s face drained in colour as he held my hand. Matt gave us the department’s number and we slowly strolled back to the car in silence. I honestly didn’t know what to say, not out loud anyway. But in my head my words and thoughts were spinning. How does a lump go from a fatty lump to blood pooling on the muscle to an affected lymph node that needs removing immediately and that’s when the first hypothetical plank of wood came out of nowhere and smacked me round the head! Cancer!

We stopped on the way home for something to eat. When I’m stressed I eat and at that point in time I was stressed! I also was in shock and didn’t want Joe to pick up on anything just yet. Andy and I went over all the things that had been said, over and over, hoping that we could convince ourselves that we’d misunderstood him and we were worried over nothing. But it didn’t matter which way we looked at it, Matt’s face, the urgent tone in his voice and the words ‘I strongly recommend it be dealt with immediately’ kept ringing through our minds. When the food arrived I couldn’t eat it. A massive headache had started and I just wanted to go home and go to bed.

I decided to be honest with Joe, because with the look on my face, mum’s face and Andy’s face, he’d know something was wrong. So when Andy and Mum left I went upstairs to Joe’s room, where he was playing on his x box. I just sat on the bed next to him and told him that there was something wrong with the lump and that I would probably have to have it removed. I didn’t go into the whole cancer thing at that time because I didn’t have all the facts myself.

Those next few days dragged. I couldn’t take my mind off it. Even at college with all the girls up to their normal skylarking I just couldn’t stop thinking about it. By Thursday I had made myself sick with worry and I couldn’t wait any longer. I decided to ring Dr Clayton but was told she was unavailable. With that I rang Matt. He was fantastic. I told him I hadn’t heard anything and that I couldn’t get a hold of Dr Clayton. So with that he was on the job for me. I was so relieved to have him as a point of contact and not some receptionist just passing me off with some unavailable spiel.

Not even half an hour after talking with Matt, Dr Clayton rang me. I could hear children in the background and assumed she must have been ringing from home. I told her how I was sick with worry and that I couldn’t wait any longer and that my mind was working overtime and she apologized, saying ‘that was understandable’.

She went on to say that the results ‘didn’t look good’ and that she and the team had discussed me, that day, and that I was now being marked as urgent and I was going to be seen within two weeks. I was to have a CT scan of my chest, abdomen and groin as the affected node is ‘deep within the chain’ and I was also going to be having an Ultrasound biopsy. I asked her if the aching I’ve had in my groin since November could be related to this and she said it was possible and that’s why they were giving me the CT scan and biopsy because the effected lymph node was secondary and they wanted to make sure the primary had come from the melanoma 13 years ago.

After I hung up, I sat with a coffee at the table with mixed emotions. Glad that I was going to be having all these tests but nervous that this cancerous lymph node was still inside me. Why couldn’t they just take that out before it spreads the disease anywhere else, if it already hadn’t! It had always been my understanding that once the cancer was in the nodes you were stuffed! Also, why wouldn’t it be from the melanoma? Where else had it come from then? That thought made a chill run down my spine. Skin cancer was bad enough, but it wasn’t as serious as all the others. That’s what I thought anyway and that’s when I turned to the Internet. I had never researched melanoma before and didn’t realise how serious it was. I found the definitions to the ‘grading’ system and realised that the grade 3 I had been given originally was serious. Apparently a mole like mine would have been followed up by a sentinel node biopsy. They never did anything like that! What the hell! Has this been spreading slowly for the past 13 years and I didn’t know? As I read on about affected lymph nodes there was nothing saying about pain in the groin or how the cancer can lay dormant for 13 years so I started looking at symptoms of other cancers. It can’t be cervical cancer because I had only had a smear last year that was fine. Reading all the information on the cancer research website, I had diagnosed myself with Ovarian Cancer. Well, that’s that then. I’m stuffed! At that stage a deep set pain shot through my chest, like indigestion and cramp at the same time. Yep, now I’m having a heart attack!

This is when the ‘endless’ two weeks began. After a few days of sickening worry imagining the cancer running rampant through my body, I rang the CT department. They hadn’t even received my card requesting the CT! By the end of that day, with countless phone calls to different secretaries they got it and this is when the ‘two weeks’ began…supposedly. The CT appointment finally came through for the following week. I’d had CT’s before so this didn’t phase me and to be honest I was just relieved to be doing something and getting one step closer to getting those nodes out in the next week…or so I thought.

this isn't my biopsy but it gives you a good idea of how the needle enters the node or tumor
After the CT was an appointment to have a Ultrasound Biopsy. This of course was within two weeks. Basically they find the effected nodes with the ultrasound and then they harpoon you. The Doctor was Jonah and i was the whale! Thank god he was good at his job and it only took three attempts to rip a tissue sample out of the node. Not pleasant at all, but that’s okay cause it’s one step nearer to getting my surgery this week…or so I thought.

Then I had to meet the Surgeon, Dr Andy. He gave me a complete check over my skin from my scalp to my toes and ran through the procedure of the surgery with me and the possible outcomes and side effects. He also told me the surgery would be within two weeks. Ha! Those magic two weeks again! By this stage it was more than half way through May and the ‘endless’ two weeks was long gone.

After the surgeon was a hospital visit to John Radcliffe in Oxford to have all my vitals checked before surgery and an explanation of what was to be expected during surgery.It turned out that having your card marked as urgent just means within two weeks in each department. So every appointment in each different department all in all took six weeks and I can honestly say they were the longest six weeks of my life!