Unhelpful consultant.

Tomorrow is my scan day, and I will get the results next week. Hopefully I will be able to reassure myself that all is fine and there's nothing horrible lurking inside me. Unfortunately I found a pea-sized lump in front of my ear recently and it was examined by a plastic surgeon consultant this morning, one I've never seen before. He is certain it's nothing to worry about, that it's just an enlarged lymph node, but he is going to order an ultrasound to be on the safe side. He thought it wasn't "justified" to extend the CT to include my neck and head. 

Two things he said irritated me. The first was that only a small minority of people get distant metastases so I shouldn't worry. Er, isn't that WHAT we worry about? Show me someone with late stage 3 cancer who WOULDN'T worry if a hard lump appeared on their face. I know that it's a minority of people who become stage 4, but it's also the minority who get melanoma in the first place, then far fewer who have spread to lymph nodes and then even fewer still who get mets after a lymph node dissection. I've been in all three of those minorities so of course I am going to worry. I know what he meant but the way he phrased it made me feel ike I was being a nuisance.

The second thing he said was that it was very small so it was unlikely to be a met. Unless I'm dreadful at science, all mets (and indeed tumours) start out the size of one cell. So something pea-sized is surely quite substantial? 

My qualm is with the fact that he will deal with cancer patients day in and day out. Surely he will have some idea of the state of mind and the level of worry that they endure. There are ways of phrasing things sensitively and I don't feel he did that. He made me feel like I was silly, and that I was worrying unduly. Hopefully it is just a node like he believes but I think it's best to check it out and that should happen without being made to feel like a hypochondriac.

God, I sound like a right cow now. Sorry.

I'm getting a scan!

Bless Rachel, she did indeed take the issue to the MDT meeting and she phoned me that afternoon to say they were very happy to scan me, particularly given I was stage 1b at my last scan in April 2012 and now I am 3c. I had my 3-monthly check up last Monday too and ended up having a punch biopsy that same afternoon (well, early evening) when the other patients had been seen to. It was just a tiny speck above my knee which had appeared a week earlier. Dr S thought better out than in so she excised it and rushed it through. Thankfully it was just a freckle that was in the midst of forming. I did a proper count the other day and found nine lesions I'd like to get rid of. I shouldn't think I'll be allowed though. They'd take a good three hours to excise, and many more pathology hours to inspect. So now I am just waiting for my scan date and I hope to god it will put things to rest for me. In other news, I have started running again! I've not ran since I was diagnosed in 2011. I'm only doing a mile and a bit every other day but it's progress. I'm also eating more fruit and less sugar. Then I really will have done everything I can.

Schrodinger's Cat

I'm going to empty my head into this post so do feel free to skip it. 

After dwelling once more on what bloody stage of cancer I have, I decided to just ask my Macmillan nurse, Rachel. She concurred that I am stage 3c, not 3b. Here's everything you need to know about stage 3c in a nutshell:

Stage 3C means that there are melanoma cells in the lymph nodes and small areas of melanoma cells in the skin or lymph channels close to the main melanoma....Between 20 and 34 out of 100 people (20 to 34%) diagnosed with stage 3C melanoma will live for more than 5 years. Between 11 and 29 out of 100 people (11 to 29%) will live for more than 10 years.

(from Cancer Research UK http://www.cancerresearchuk.org/cancer-help/type/melanoma/treatment/stages-of-melanoma and http://www.cancerresearchuk.org/cancer-help/type/melanoma/treatment/melanoma-statistics-and-outlook)

So that's fairly shit. An average of 73% of people don't make it beyond 5 years of diagnosis. Yes, I know, that's not exactly what it says, and none of us are statistics and look on the bright side. But I don't feel bright. I feel angry to be living on death row, never knowing whether I'll get a reprieve or the lethal injection. 

Recently, I decided to find and book our dream holiday. It will be on the beautiful Seychelles, away from everyone and everything. Surrounded by nature, blue sea and sky, with the chance to snorkel with bright fish, lie on a hammock and read whilst drinking a cocktail, and experience true relaxation. Only, ironically, I can't relax because I can't book it. I can't book because I can't pay for it. And I can't pay for it because my head is loudly screaming at me "You might be dead! It's a waste of money because you won't be here. And even if you are, you might be on vem and unable to go into daylight". I'm normally a reasonably spontaneous person. I go on cheap holidays on the spur of the moment and I don't plan ahead beyond two months. This is a first for me, and it is a horrible realisation that one year from now, I may realistically be dead.

I decided the best way forward to try and afford myself some peace of mind is to ask for a scan. I just desperately want my team to look inside my body and reassure me that I am fine, that I can go on holiday, that there is nothing wrong. That's what I want so I phoned Rachel today and asked for it. She did her job and played Devil's Advocate: how would I feel in a week or a month? What if I wanted another scan then? What if a scan threw something up and meant a three month wait to find out if it was cancerous? What if it DID show cancer? I answered them all honestly. I would rather know than guess. Schrodinger's Cat, see? There either is or isn't cancer in my organs. Lots of people think the SC thought experiment proves that a cat can be both alive and dead at the same time, but that's a misconception. Actually its point is to show how ridiculous theory can be when put into practice. The point of it is, the cat is either alive or dead. The scan will show cancer or it won't. Either way, I will know and can stop wondering because I think that's the thing that torments the most. Hence my oscillating posts recently, going from thinking I'm not okay to I'm fine and back. They accurately reflect my recent state of mind. 

Rachel emailed a short while later to say I will be discussed at the MDT meeting next Tuesday. Please please let them scan me. Watching and waiting and wondering is torturous.

Melodramatic

I just read my last post back and it sounds so melodramatic. I don't have a foreboding feeling any longer and no new mets have appeared. This cancer stuff really messes with your brain some days.
In other (boring) news, I went for a run earlier, the first since I had a significant proportion of leg removed. The nerve damage didn't hurt at all so I plan on running every other day.and building up my fitness levels. Can't hurt, right?

I also realised I am ineligible for the BRIM-8 trial for vemurafenib because a) I've had two mets and b) I've not had the melanoma resected within 70 days. I am actually starting to wish now that there was a trial I could do after all. But then again there's been no sign of any cancer since May. Could it all be over? I hope so.