Life is not fair

The Royal Marsden phoned yesterday. Apparently, I’m very anaemic–which explains why my training has turned so crap recently. It’s so bad they want to give me a transfusion some time next week. Ho hum.

From what I can work out, they suspect I might be bleeding internally. The most likely culprit is a melanoma metastasis to the small bowel, which has ulcerated and is bleeding into the bowel. But I haven’t experienced any intestinal pain or obstruction, and I haven’t been (excuse me, this is gross) passing melena (bloody number two). Or it could be that I’m bleeding from another ulcer. I had a tube down my neck in January that showed my ulcer had healed, but I could have developed another. I’ve certainly been getting enough stomach pain for this to be the case. I thought it was just reflux, but could be another ulcer, I guess. But again, there’s been no melena.

Another possibility, and this is what I hope it is, is that the combined doses of Ranitidine and Lansoprazole I’ve been taking have affected my uptake of iron from my diet. Stomach acid is needed for digestion of many nutrients, and long term use of antacids is associated with iron-deficiency anaemia. Added to this is the fact I’ve been taking iron supplements for a week now, and I’ve been feeling better. I’m going to stop taking Ranitidine for a month or so, and see if this has any effect.

Unfortunately, because of my history, the Royal Marsden want to make sure I’m clear of a stomach/intestinal metastasis. This means tests. And that means cameras down the mouth and cameras up the bum. Hopefully this won’t happen at the same time, because that would really suck.

They’ve also forbidden me to go running. Which also sucks.

Went in to see the oncologist today. Saw the consultant rather than one of the registrars. He seemed very pleased to see me well, which was nice. I’ve been having spells of dizziness after standing up, and I was worried that this was the tumour acting up. The oncologist said this would be very unusual behaviour for a brain tumour, and that I should look out for the symptoms from last year: visual disturbances, balance problems, weakness on right side, inability to judge distance, etc. I was tested for blood pressure drops when standing (negative), then had blood taken to check my thyroid and a couple of other things. He said he wasn’t worried enough to order a scan, but to call in if anything worsened, and he’d order an MRI for me. Next appointment, August 10th.

Short version: I’m now sufficiently unusual that the consultant is taking a personal interest. This is a good thing.

How unusual? Well. How to answer that?  Have a look at this link:http://www.skincancer.org/management-of-melanoma-brain-metastases-where-do-we-stand.html

I had Whole Brain Radiation (WBR) for my brain tumour. Median survival is 3.5-4 months. I’m now at 10 months and counting. I don’t know why I’m not dead. I want to say something meaningful at this point, but I can’t think of anything that doesn’t sound like a line from a movie.

I’m smiling, though.

FDA Approval Expected this Month for Ipilimumab

By: BRUCE JANCIN, Skin & Allergy News Digital Network

More.

***

Worth a read, especially for some of the peculiar responses people have had to the drug (tumours growing and/or new sites of metastasis before stabilization). And also there are the usual dismal survival stats:

“The 12-month survival rate was 46% with ipilimumab alone, compared with 25% with vaccine only; the 24-month survival rates were 23% and 14%. Median overall survival was 10.0 months with ipilimumab plus vaccine, 10.1 months with ipilimumab alone, and 6.4 months with vaccine only”

Median survival 10 months. And that’s an improvement. Melanoma is a very nasty cancer once it’s spread. I was diagnosed with Stage IV melanoma in August, 2009. That’s 19 months ago. I am lucky to still be alive.

I have an appointment with the Royal Marsden today–progress check on my cancer. Although I’m not having any symptoms at the moment, just thinking about going in to the hospital is making me antsy. The people are great, the standard of care is amazing, but it’s just not somewhere I can feel comfortable, and the thought of going in is casting a shadow over my morning.

On the other hand, I ran eight miles this morning and felt great, so there you go.

This is my current schedule for races:

Sunday 6th Feb: Watford Half Marathon

Sunday 6th Mar: Berkhamstead Half Marathon

Apr: [training]

Sunday 1st May: 3 Forts Marathon

Sunday 19th June: Torbay Half Marathon

July: undecided. Either Trailwalker or the Fairlands Valley Challenge Ultra 50

Sunday 14th August: Salisbury 5-4-3-2-1

September: New Forest Marathon (not yet open for entries)

Saturday October 29th: Snowdonia Marathon

Nov: Luton Marathon / BKK marathon (depending on funds)

Dec: nothing yet (but there will be).

Depending on how feel during the training, i may try and squeeze in a couple of 10ks or half marathons during the training only months (and other places if I can fit them into the program).

So why so much this year? I think ‘Fuck Cancer’ is a good enough reason. If I’m going to die, it’s going to be in a blaze of fucking glory. Melanoma can kiss my hairy ass.

Edited to add dates and the Torbay Half.

Well, it’s been a looong time since I updated here. The reasons for that are manifold, but the main one is that I now post regular updates on Facebook. If i know you and we’re not linked on facebook, send me a friend request. The email address I’m using there is euan DOT harvey AT gmail.com. Replace the whatsits with the doodads, of course.

For people I don’t know personally, I’ll divide this update into bits. First is health. The cancer seems to be stable at the moment. I’m not getting any new symptoms, but it could start growing again at any time, so I’m not holding my breath or about to announce that I’ve beaten it. The last conversation I had with my oncologist went something like this:

Him: “No symptoms?”

Me: “No.”

Him: “Hm.” [Grins]. “Well, that’s unusual.”

Which I guess is good.

I’m running a lot, which helps my mood and (may) help with keeping the cancer at bay. I’m registered for the Watford Half-Marathon (at least, I’ve sent off my form and they’ve cashed my check, so I guess I am), and I think they still have places. So if you live around Watford, get in there!

For writing, I haven’t touched pen to paper, or finger to keyboard, for a long time, but I will be starting again now I have achieved some measure of mental stability. The impetus came from selling two stories to Realms of Fantasy. I’m going to start with revising a couple of shorts I’ve got hanging around, and then perhaps think about starting something longer.

The family’s all good. My wife is very slowly adjusting to living in the UK. She’s started work now, which gives her much more focus. She complains about being tired–but she’s never really happy unless she’s complaining about something. She’s smiling a lot more, which tells me how she really feels.

I do intend to post more on this blog. So be prepared for a deluge of posts about running, and writing (and cancer).

Best wishes to you all for 2011.

Serious stomach pain all night, despite taking three codeine. Either it’s the mother of all ulcers, or the cancer has spread to my stomach. I’m calling the hospital to try and get an appointment ASAP.

I said I’d post yesterday, but I was too tired. The run was torture, but the press-ups afterwards were easier. Took two more Zopiclone, but couldn’t sleep very well (Sleep 8.45, waking: 12.30, 1.30, 3.00 (glass of milk), 4.45, 5.20). I got up eventually at 5.20 and had a couple of glasses of water. I felt tired, but about normal. But when I went back to try dozing again, I ended up rushing for the bathroom with saliva filling the back of my mouth, then spent about five minutes getting rid of the water and the milk.

So, that’s headaches (mild at the moment), nausea, fatigue, some dizziness. Is this due to a combination of insomnia and the side effects of Zopiclone? Or has the tumour woken up? (Two months after being zapped, which kind of sucks.)

Scan on Thursday next week. Counting down the days.

I’ve been having bad insomnia (bad, as in sleeping two hours, then waking up and not sleeping again until 5.30) since Saturday evening. Sunday I felt okay, just tired. But Monday and Tuesday I felt washed out completely: spinning head, some very mild vertigo, tiredness, etc. I tried using sleeping pills (Zopiclone) last night, and I woke up at 4.30, rather than 12.30, but I still feel like death. My stomach also hurts all the time.

So. It could be I’ve picked up some kind of infection; I’ve been sneezing as well, and my body temperature has been fluctating, shivering cold one moment, sweating the next. That would be the good option.

The other option is that the cancer has woken up and started growing again, and that these are the first symptoms of brain inflammation. I have a scan next Thursday, and a clinic appointment a week after that, so I’ll know then.

In the meantime, I’m going to go for a long run (warmly wrapped up), and see what I feel like after that.

I haven’t posted anything for a while, mainly because there’s been nothing much to report. Much as I might dislike it, my life now revolves around the fact that I have cancer. It’s not the whole of my life, but it’s certainly one of the main pivots, along with my family. So, in this case, no new posts meant nothing much to say. (Rather than being unable to say anything.)

I’ve shaken off the last of the somnolence from the WBR. And although I still have insomnia–I wake up every night at around 1.30–I’ve given up on sleeping pills, and I’m feeling much better for it. I’ve stopped taking codeine as well, and although I had headaches for the first couple of days, I now feel much better: no headaches, and my digestion seems to have settled. Drugs are useful for certain things, but they also have various unpleasant side effects. If you can stop them, you should. (YMMV of course.)

On the depression front, my mood has lifted a lot. Mainly, I suspect, because my brain (and its vari0us neurotransmitters) is settling down after being abused by the WBR. But also I’m sure due to exercise: running three times a week*, skipping**, stretching, and working my way through a 100 push up program***. Dopamine is a wonderful thing, and although it may hurt like, well, something very painful, running**** up hills will make you feel great when you finish.

And on a final note, my levels of fitness dropped to frankly fricken pathetic after the operation in April and the subsequent brain tumour fiasco. But today, as I was doing my final block of running, I felt for a short time like I did six months ago: that I was flying over the grass with my feet barely touching the ground and everything working in perfect time–breathing deep, arms swinging, legs pumping.

It was wonderful.

* Walk/run actually. The program I’m following is here. I just finished week 4.

**Don’t laugh. Ask boxers how hard this is. I’m doing 1 minute blocks of rope-jumping with 1 minute rests for a total of 30 minutes. harder than it sounds.

***Current maximum: 6. LOL, sad, right? Mind you, I started at 3, so there has been improvement.

****Actually, jogging while wheezing like a consumptive, but there you go.