Soi Dogs

All tubes removed; I've been de-Borgified

The last of the tubes came out yesterday at the Royal Marsden, as well as the surgical strips covering the incision on my belly. I now have only two dressings and a bunch of stitches left--and I feel entirely more human than I did a couple of days ago.

I was going to type a longer version of what had happened in the hospital--but it seems far too navel gazing, so I'm going to skip it and just provide a short list of Things I Have Learned:

1. Morphine is really, really addictive. Yup. Physical withdrawal has now run it's course, thank God.

2. Your abdominal muscles are very important in any number of things. Like standing up. Or sitting upright. Or raising your arm. Or, in fact, just about every fricken movement you can make. And when they have been cut, you become as weak as . . . a very weak thing. So do more sit ups.

3. The removal of drains is a subject of intense horror.

4. They say laughter is the best medicine. Well, I can now reveal that if you've had an abdominal incision, that's a DAMNED LIE!

5. Your sense of wellbeing is directly inversely correlated with the number of tubes running into your body.

And that's about it.

I have another appointment with the hospital on Thursday next week to discuss other treatment options (possible chemo--although it doesn't do much for melanoma, and maybe some experimental stuff), and to get the pathology results. Fingers crossed that the abdominal mass wasn't melanoma.

Surgery done

Back home. This will be a short post--I ache, and typing just isn't something I have the discretionary energy or will for. Short story: I'm okay, all visible cancer has been removed, my spleen has been taken out (just in case), the cancer is likely to come back (but I may be lucky), more treatment options will follow.

Longer post to follow.

Last post for a while

I'm getting ready to go into the hospital now--gathering clothes and pyjamas etc., plus (most important) books to read while I'm laid up. I'm due in the hospital at 2.30; the operation is sometime tomorrow. The physiotherapist said they'll discharge me when I can walk down the main hospital corridor unaided--which hopefully will take around a week or so. (Maybe a little longer.) Until then, I'll be electronically incommunicado.

Surgery soon

I went into the Royal Marsden hospital Wednesday. All set now for the surgery on Tuesday. I'll be in for around 7-10 days.

Back in Thailand

Back in Thailand for ten days (about a week left now), trying to sort out visas and passports. All the kids have UK passports now (well, the application is in; we just have to collect them) as well as Thai passports. Just need to get the settlement visa for the wife sorted out. This involves quite a lot of paperwork. I took a photo of the immigration official handling my wife's application:

Tally ho!

Going under the knife

I went in again to the Royal Marsden on Thursday. They gave me another CT scan--results negative again--and then I spoke with the oncologist who is treating me: Professor Thomas, a most intimidating man. His comments this time can be summed up as: Situation grim. Major surgery. Small chance of death during procedure. Large scar, through the tattoo on your belly unfortunately. Will try to match up edges when sewing you up. Ten days in hospital. One month to recover.

He also said that my presentation was very unusual for melanoma. It's possible that the lump in my abdomen is not melanoma. It "should be" (his words), but it's very odd for melanoma to spread in this way. So . . . it might be something benign. Which would be very good. That would put me on Stage III rather than Stage IV, which makes a very large difference in prognosis.

On the other hand, and somewhat less reassuringly, he also said that if it *is* melanoma, then it's possible my disease is quite aggressive, as it's also not usual to get melanoma in three different places at once (primary tumor, metastasis to lymph node, and then distant metastasis).

The only way he can know, of course, is by chopping out the whatsit and looking at it. He also doesn't know what it's attached to, so it's possible I may lose my spleen, and/or a section of my bowel. Still, I can live without my spleen, and I'm certain a small chunk of bowel won't be missed. We do seem to have rather a lot of it, after all.

The operation is set for November 24th, but that might change if there aren't enough beds in the hospital for me.

I have to spend the month before the op getting things in motion for something else. I'll post about it later.

Oh, and I had two rejections for short stories. They both arrived today, which kind of made the morning email check a bit sucky.

More referrals

The past couple of weeks have just been getting moved from one doctor to another, but it looks like I'm with the best lot now. I had some trouble registering for a GP. For a while, the NHS trust refused to offer me treatment, as I'd been living outside the UK for so long, but fortunately my aunt works with the trust and went in and bent some ears and got it sorted. 

After getting registered with a GP, I got referred to Mount Vernon oncology center at the end of the first week. At Mt. Vernon they gave me a PET scan and the basic prognosis. The PET scan showed nothing further--so it's not spread to my lungs or brain, which is, you know, nice. However, the consultant was pretty blunt; he said that it's very rare to eliminate cancer completely once it's spread, and that especially holds true for melanoma. He also said that there's a 90% chance that the cancer has spread to other parts in my body, but it doesn't show on the PET scan as the scan can only pick up tumors around 1cm or larger. He also said that the NHS doesn't offer chemo for melanoma as it doesn't actually affect survival time--it just lengthens the time to recurrence, and the side effects are horrendous (thus reducing hardiness for surgery, which is the only real solution). So . . . pretty much what I'd read about the non effects of chemo. Kind of surprising that the NHS doesn't offer it, but it doesn't make any difference in overall survival. On the bright side, he said that it looks as if I may be one of the few people for whom surgery is an option--seeing as I only have resolvable tumors in three places. He thinks the tumor in my abdomen is probably attached to either my bowel or the mesentery--the abdominal wall. He also said that the surgeon is going to need to take a look before any surgery--and if the surgeon sees numerous minor tumors (smaller than 1 cm), then they're not going to operate, as it wouldn't really do much good. He then referred me to a surgical oncology unit--the Royal Marsden in Kensington.

Thursday last week I went down to the Royal Marsden. I got seen by an oncologist and a surgical oncologist. They took another biopsy (and my leg wouldn't stop bleeding for about forty minutes, which kind of sucked), and booked me in for another appointment next Thursday.

Basically, I think the procedure will be: 1) exploratory surgery to see it the tumor is resectable. 2) If it is, then resection of all tumors. This will lay me out for about two weeks I think, following the surgery. There's no chemo afterward, but I'll have to go back for check ups every three months or so. If the tumor is not resectable, then they'll have to think about what they want to do next.

I'll write more when I know more.

PET scan

PET scan today at the Mount Vernon hospital. Nowhere near as uncomfortable as the CAT scan--no poking things up my bottom, which was a VAST improvement, let me tell you. In fact, I fell asleep during the scan, which just goes to show how astonishingly dull it was.

No results yet of course. Appointment with the oncologist tomorrow.

Really bad news

Diagnosis came on Saturday. I have metastatic melanoma. CT scan shows a tumor in one lymph node in the groin, possible smaller tumors in the abdominal lymph nodes, and a large mass attached to my spleen. The doctors said it's impossible to tell whether the splenic mass is a metastasis or not, but it's likely. If it isn't, then I either have concurrent lymphoma (which would frankly suck), or there's a small chance it could be benign. (It's kind of big--5cm by 8cm by 8cm--and melanoma metastases to the spleen are rare, 5% of total.) But, even if it's benign, it still needs to come out.

What looks likely is immediate surgery (block removal of lymph nodes in groin, removal of primary tumor on my hip, splenectomy, possible removal of lymph nodes in my abdomen) and then adjuvant chemotherapy and radiation. Chemo will suck, but at least I can take consolation in the fact that I'm already bald, so losing my hair won't be a biggie.

I may stay in Thailand for treatment. If so, I'll be getting treated at Sirirat hospital--which is the one they send the King to, so it's good. But . . . I'm not sure yet how much experience they have with melanoma. It's kind of rare in dark-skinned people (like most Thais). At present, though, I'm negotiating the maze of insurance. Which is really not much fun.

The other option is traveling back to the UK. But the really advanced melanoma treatment is in the US and Australia, so I'm not sure how much advantage being in the UK would give me. I'm also trying to find out about treatment in Australia. (But I suspect the cost will be brutal.)

Bad news

Looks like the pathologist may have made a mistake. I have a tumor in my thigh in a lymph node. Fine needle aspiration done already, CT scan tomorrow. Results from both on Saturday next week.

Possibilities (in decreasing order of likelihood):

1. Metastatic melanoma

2. Lymphoma

3. Metastasis of the Spitz Nevus (unlikely)

4. TB (very unlikely)

5. Viral infection/some other random disease (extremely unlikely)

Edited to add:

When they told me about the CT scan, a smiling nurse gave me two bottles of orange colored gunk, along with the times when I had to drink them (5.00 p.m. today and 8.00 p.m. today). She told me it was 'yaa rabai'.

I've just worked out why it's called that. 'Rabai tor' in Thai means 'clean out the drains'. Yaa rabai does the same thing, only to your insides.

Yup. I'm feeling pretty damn well cleaned out, I can tell you. I must have lost a good three kilos or so. Quick! To the scales! And then claim a sudden weight loss victory!