Friday, 14 January 2011

2010 12th January - Birthdays & Good News

On Wednesday my eldest (though technically my third born, second pregnancy - nothing with me is simple is it?) turned 18. A grown up. I made an actual grown up!

Since she goes to college Wed-Fri we spent most of Monday in Stamford, which for those who don't know, is a very pretty town full of stone buildings and cobbled streets with slight hills and plenty of green. There's a big old house with deer in the grounds and some funky statues in the gardens. A great place for picnics and somewhere to let the kids run around. It's where I was supposed to go to college and where I in fact did study some law for a while when I was working for a firm of solicitors. Anyway, Karys hadn't been there for a while and we fancied going somewhere different.

First stop Subway - they do a veggie patty now which is a kind of nut loaf/pate type thing sliced up. Couldn't really taste it much because I had it stuffed with olives, jalapenos and gherkins as well but the whole thing was VERY filling. Karys managed to eat nearly a whole footlong sub! I struggled with the half sub. (See how I avoided a reference to inches there?).

Then we just wandered down the cobbles in and out of shops. There are a few decent shops in the town that sell surf type stuff, things that aren't the usual high street chains, which I like. We ended up in a shop that sells loads of things, bags, bookmarks, purses, jewellery, ornaments, cuddly toys, but again, more interesting ones. We found a ring that fit Karys, which isn't so easy since she has inherited long thin fingers from me (I always used to think they looked like the bone the girl in the Gingerbread House poked through the cage to make the witch think they weren't getting fat......overactive imagination, me?). When she was 16 one of her presents was a silver and garnet half eternity style ring that I got when I was a similar age. She still wears it. Now she has another ring for her 18th. I couldn't help thinking "she'll be able to think about me when she looks at it when I'm gone".

I like that now the pain is controlled again (seemingly by the chemo or the op, the yoga, who knows) we can just wander around some shops, go and have a coffee. My legs were aching and I was tired from the fresh air and exercise but I was also wearing heels. It was a good tired of course. I dropped Karys off at her boyfriend's with her new shoes (with huge platforms) having paid a substantial amount of money into her bank account. She's having a tattoo and has enough now she thinks. She's doing an Art course and has designed the dragon herself, it's brilliant! I've had a thing for dragons for years, collected Enchantica when I was married, but then had to sell everything to feed us and pay maintenance when I left their dad but that's OK. I tend towards minimalist decor now so they'd have had no place in my home now. I'd quite happily have that dragon as my end of chemo tattoo that I'm planning....more on that in a second.

Tuesday my legs were pretty unresponsive and even Wednesday they didn't want to move far from the sofa. I figured I could skip the yoga for after the walking then made up for it with a hard 30 minutes on Wednesday and a short session on Thursday. It makes me hot which is useful since I've got down to my last 100 litres of heating oil. Being at an all time high over Christmas I held off ordering and wasn't in a position to stock up before that. Still it's dropped a bit but I've opted for the minimum order of 500 litres for the best part of £340 and booked a boiler service for next week as well :( I think I'll leave Izzy's annual service until next month.

So, it was three appointments again this week at the hospital. First with urology. Different bloke again - so the fourth urologist I've seen in a year but he was fine. He asked how I felt about being taught to use a catheter once, twice a week or daily, depending on my requirements. I told him I'd specifically asked for this a year ago (almost exactly) but had been told this was "stupid, we don't do that with females" by the urologist mysteriously not working there anymore. He's referred me to the continence nurse and hopefully this will be enough, but it's highly likely I'll have to go back for surgery AGAIN for the third time since March 2010 and have it surgically dilated then continue myself. He had taken the time to read me notes and seen my recent admission and chemo so is hoping to avoid yet another general anaesthetic.

Second was with Dr Tom, my onco. He commented on how good I was looking, and I agreed I've not felt like this since before I knew I was ill, except I'm not in pain. For the first time in a while he had good news:

CEA is within normal range again after only 3 lots of Evil Irene. I knew it had started to drop after the first but hadn't seen this last test result from when I was in hospital so about a month ago. Of course it's probably on it's way up again now, so I've had another test today. Because I'm doing so well and the chemo made me so ill, I'm having a CT scan in the next couple of weeks then see him for the results. Based on that I'll decide if I continue with some more chemo (maybe I'll try another three and see how I feel) or just take the PICC out and monitor with blood tests. If my marker goes up again significantly then I can have another scan. Hopefully we'll be able to see if they're growing again before I get symptoms and can get back on the chemo.

Because of the fistula, I'm no longer a suitable candidate for Avastin, which is a bit shit, but then there's no guarantee that would have made any difference. However, because I can't have that, it means I'm "unique" and as such am more likely to get the PCT to agree to release money from the fund for K-RAS gene tests. If it's not mutated we can try Cetuximab. Sadly that causes crappy skin so I'm not keen on that idea, but there's always some shitty side effect that in the scheme of things is probably "worth it". Dr Tom said back when he was a student they used to all wear aprons in oncology because they hadn't got the anti-emetics we have now so a lot patients would say hello and promptly hurl all over their oncologist! He's not THAT old Dr Tom, early 50s and not looking his age I'd say but it's a major advance in treatment that I'm grateful for.

I mentioned that, although at first I thought it was the contents of my descending colon moving, I've now realised they must have flushed that during surgery and it's Fatty's mucous side (the bit connected to my J-pouch where all the trouble is) sucking back the contents of my bag. This causes me discomfort when amounts less than a teaspoon need to be passed. It's not often, maybe once a day at most, but it does mean I've got the same problem of waste and bacteria coming out of three places now, with no control over any of it. Having just finished a course of antibiotics for yet another infection and this is just going be a constant cause of them. So Dr Tom is putting me on next week's MDT and will "ask the surgical boys".

I'll give the stoma nurses a call on Tuesday to make sure a) he did and b) see what was said or arrange another appointment. I know the surgeon said there is a thing called a fistula plug which may be an option so then it's just coming out the way nature intended and through Fatty OR maybe they can sew up the distal part of the stoma to stop anything getting in. The only reason that bit's there is so it's not floating around inside and if they need to get hold of it, it's there. Loop stomas are supposed to be temporary but mine is permanent. Nothing simple. Nothing straight forward.

I'm not sure what I'll do. I was resigned to starting again, expecting him to recommend starting again next week. My plans for holidays and visiting my best friend in France for her 40th all revolve around chemo, how I feel (will be on a slightly reduced dose which should help) and when I've finished. So, plenty to think about over the next couple of weeks then, but none of it bad!


Fiona said...

Great news about the CEA level. Good to read that you are doing well and not in so much pain.

Tony Songhurst said...

Great to hear some more positive stuff from you loopster!

I will have to read up a bit on CEA levels as mine has also dropped from 5+ to 3+ and need to know what that means!

All the best

T xx

Loopy said...

Tony the thing with CEA is, if yours react in a linear way to tumour activity they are a good marker. The numbers don't count it's what they do, i.e. increase gradually as tumours grow. Chemo can increase levels, smoking can. Some people have massive tumours and no CEA activity. Others high readings but no visible tumours - it's not a marker for everyone, but worth them using as an extra guide.

For me, my baseline was always under 2 so when they went up, when the tumours appeared that was a "good marker". Anything below 5 is considered normal. Having an appetite, weight stabilising - all due to tumours not producing so much of their chemicals I knew about before my blood test so I'm very confident the scans will show some shrinkage as is my onco.

On chemo especially, any drop in CEA is a good sign, sometimes it doesn't drop until after you finish it.

crabbymonty said...

should really call the fistula a "footula", cause it always seems they kick you when you are down. . . . I do like how you slipped the pun in there about the fistula being "a bit shit". Good to see your humor in action!

Loopy said...

Hmm use of "crap" & "shit" as adjectives is a tad high in this post!

Seen in twitter: "if I had £1 for every time I didn't give a shit, I could afford the laxatives I need....".