I always find that statement confusing - negative usually means bad, but in this case it means good. It took a few seconds for my head to figure that out when the lovely Dr Stewart phoned on Wednesday. "All the lesions came back negative," she said. Additionally, my bloodwork showed normal LDH levels (LDH is an enzyme produced when tissue breaks down, hence the more cancer, the more elevated the LDH.) Hooray! I'd been waiting for a couple of weeks for that news, but once again I felt that curious sense of nothingness when I should have been cheering and whooping. Not many of my real life friends know about the cancer. I've just told my friends on a forum I frequent (not a cancer forum, still don't do 'em). One of them, a lovely lady, said I must be ecstatic and crying for joy. I know I'm supposed to. I guess emotions don't always read the handbook and abide by it though, do they? The reason, I think, is that, unlike the start of cancer, when you can remember where you were and the moment you were told, there is no end to it. When you're running a marathon, you don't celebrate when you reach the 6-mile marker, do you? In fact, that's a really crap simile because cancer isn't even a marathon. Imagine if you were told to run and that you could never stop running ever again. At what point do you start crying for joy because you've ran a certain distance? I sound like a miserable sod, I know I do, and I appreciate everyone being happy for me. But, frankly, this is my blog and I can be as honest and as miserable as I want and if you don't like, you can bugger off too. This is the one place where I'm not plastering my happy face on and being jovial and trivialising it all.
Someone else called me amazingly strong, and another person called me a fighter. And here I must confess something to you, dear reader: I am a fraud.
Right, hang on a minute, go and put the kettle on and come back with a brew because I'm about to launch into another of my 'what does it all mean?!" posts and we need a cuppa to counterbalance such seriousness. Back? Ready? Good! Now click the video below and play as appropriate background music while we delve into the boring world of introspection:
In truth, I don't know how to fight cancer. I'm not brave or amazingly strong. My February biopsy showed my immune system was fighting the cancer cells but that's not me. 'You can fight this' is something we say to give encouragement and show admiration, but when you peel away the bravado, I'm not sure what fighting cancer means to me. For people who undertake proactive, ongoing treatment, I think I get it. The fight is getting up and dressed every day and taking drugs which make you feel worse than the actual cancer. The fight is keeping your eyes locked on the light at the end of that tunnel filled with hospital appointments and pain and medical jargon and uncertainty. To a small extent, I was there last year. But I never felt like I was fighting. I feel like a faux cancer patient sometimes; someone who has sporadic surgery when the doctors tell me to have it, who copes with pain because there's no 'off' switch, who doesn't dwell purely because it's not in my nature, rather than it being a concerted effort. I'm not "fighting". And as much as my ego likes the idea of being brave and amazing in everybody's eyes, the truth is that I'm neither of those things. I'm just me, day after day.
Now that my life is more likely to be shortened, though, I have decided to do one brave thing and that is to leave my nice secure job and go back to doing what I love, making television programmes. There is no job security in TV, work is difficult to come by, the hours are long, and any surgery will be on my own time and £££. Is it the right move? Feck it. Yep, it is. I have no idea when the next tumour will pop up and bugger me if I'm going to live a life of safety just in case. I want to feel alive again and I want to love what I do again. Carpe diem! P.S. If you didn't watch that video because you were reading, I suggest you do so RIGHT NOW. It is HILARIOUSLY bad!
I have decided this is an unacceptable excuse. I have used it a lot with regards to medics previously when I've been waiting on phone calls that have never come, letters that have not arrived and appointments that have left me sitting in the waiting room for over an hour. Most previously, I used it on Thursday and Friday just gone, for the biopsy results that I was told would be delivered to me in a phone call. Whenever the phone rang on those two days, my stomach would lurch and my heart would beat faster. The first time it rang, it was my mum. The second time, the bank. The third time, a friend. By the fourth time, I felt a pang of disappointment before I even looked at the phone's screen to see who was calling.
"Was it the hospital?" asked my boss each time.
"No. I know they're busy but..."
But they should ring nonetheless. But they should not keep me on tenterhooks when I'm waiting to find out about my prognosis. But they should be professional and sodding well ring me when they said they would, even if it's to say there's no news yet.
This is one of the problems with the NHS. They deal with such a quantity of patients that we all become a diagnosis and a treatment plan. They forget that each of us has emotions and fears. It's easy to use being busy as an excuse but it really isn't an excuse. Why should it be? What if I didn't phone people when I said I would, on the premise of being busy? What if I had arranged to meet somone and then turned up 80 minutes late because I was busy? Would they smile and say "no problem"? No, they'd quite rightly be angry and upset. Why, then, do I keep telling medics it's okay to keep me waiting, that I know they're busy? What are they busy with that is more important than letting me know whether I have even more cancer or not, whether my expected lifespan diminishes yet again, whether I will need to go for yet more scans or whether I can get on with life for now?
No, being busy is not an acceptable excuse. If a doctor says they will phone with results at a particular time, then they should put aside five minutes to make that phone call. What are they there for, if not the patients?
This is a difficult post for me to write, and I've put it off 'til now because it's hard to know what to say. I found out recently that the cancer has returned. This changes quite a lot for me. I noticed around Christmas that there was a tiny dark spot in the middle of my right thigh, about two inches away from my groin dissection scar. I didn't think too much about it, but by the start of February it had grown significantly. It was still tiny - just under 2 millimetres - but definitely bigger than it had been six weeks prior.
I phoned Dr Stewart and she immediately booked me into her surgical schedule for the next day. The spot was removed in a procedure called a punch biopsy, whereby a circular blade similar to a miniature apple corer is used to 'punch' out the skin containing the lesion. It only needs one stitch (compared with scalpel removal for larger lesions, which have needed up to 8 stitches) and it's a lot quicker to do as no cauterisation is required. I got the results when I went for my regular check up 23 days after the procedure, and as I hadn't heard from her, I assumed everything was fine and that she'd simply forgotten to let me know the outcome. I wasn't prepared for the words "it's not good news". The biopsy had revealed the spot was malignant melanoma; to be specific, an in-transit metastases. Simply put, it's a met originating from the primary tumour, which means one thing: I still have cancer in my lymphatic system or my skin or both. My groin lymph nodes were removed last April and one node was shown to contain cancer. The hope was that by removing them all plus the original tumour, everything would have been caught. In some lucky people that is the case, but in other people, as with me, some cancerous cells get snared in the lymph channels as they are in transit from the primary tumour to the lymph nodes. Often they will stay hidden and quiet for months, even years, but at some point, and for some reason, they are triggered to start dividing and a tumour grows. That is what the spot was. The reason it's a game-changer is this: we will never be able to say from now on that I am clear of cancer. As Dr Stewart told me, it's more likely than not that I will always have cancer and that melanoma will randomly appear. We will, of course, remove any mets as soon as they show up on my skin but there will always be some cancerous cells lurking in my lymphatic system, just waiting for their chance. So what happens now? As long as the mets continue to grow on my skin, where they can easily be seen, then it's not too much of a problem. So long as they stay in my leg, then it's not too much of a problem. But if and when those cells leave my leg through my lymph system, if and when they start growing on my internal organs rather than on my skin...well, I don't need to spell it out, do I? Since then I've had punch biopsies to two dark dots on my thigh and a random bump on my shin. I get the results from those soon. I suspect two will come back as fine and one will come back as melanoma. I will cross that bridge when I come to it because the thought of two recurrences inside 10 months is a grim one. No point worrying about its meaning 'til I know for sure what's what.
