Saturday, 18 December 2010

2010 - 18th December - Getting Back to "Normal".

Thought I'd better put something here now I'm up and able again, finally.

The bridge came out on Monday, painlesslye, shortly after which, Fatty Arbuckle decided it would be a good time to start reminding me how to empty a bag, instead of just looking at it wondering if there was any point having one stuck there, doing nothing.

He's been operating very well ever since I'm happy to say. Who'd have thought I'd be pleased to have a permanent, huge, ugly stoma in the middle of my belly rendering some of the nice new (now roomy) size 10 clothes I bought useless. The "horror" of the painful chemo weeks is almost just a memory. The hair on my legs, though sparse and patchy continues to grow back - WHY? The hair on my head is falling out more slowly and I think I see fluffy new baby hairs at my fringe - or this could just be where hair has snapped off, but my hair is so sparse, with bald patches above my ears it won't take many more sessions before it's all gone, or needs shaving. I should get the length cut now but really can't be bothered to organise that. I was too weak the Saturday after surgery for the booked appointment I had, I couldn't sit up in a chair long enough so missed that opportunity.

Mum and Peter came to visit on Saturday and brought food with them and stayed for several hours. I didn't really want to be left alone, after having company all day, but I was tired. Karys came on Sunday and Beckie and we watched some Peter Kay which luckily didn't cause too much pain, but I did spend most of it with a nervous hand over Fatty holding everything in. For Karys that meant a bus ride and then a 2 mile walk in frozen snow :o( and made me feel crap that I wasn't able to go and pick her up from the bus stop but she didn't need to walk back at least, getting a lift from Aunty.

Monday Mike came after I got back from having the bridge out - and having a look at diffrent bags - things don't seem to have changed that much to be honest in the 3 years without a stoma.

I said to sis "it's not really as much fun as shoe shopping is it?" as Sarah got different boxes down for me to look at. In the end, because the stoma is about 3 times bigger than my last one, I opted for a two piece - the output is thicker so it's nice to be able to change the bag and clean things properly every day without ripping glue off my belly every day. The Salts base plate I'm trying has an extra large flange (stifles giggles at the word flange STILL) made of a sort of fabric, like micropore tape almost but more webbed and there's no way it's moving but makes me feel I've got extra protection against a hernia. The Salts bags are still as noisy as wearing Walkers crisps packets and I really don't like the closure compared to my old faithful one piece but once Fatty has shrunk back enough to use a smaller size I'm sure I'll go back to those.

I got sent some samples of the tiniest closed bags I've ever seen, lord knows how I'm supposed to get one of those round Fatty, they got my address so horrendously wrong (over the phone order by hospital) wrong, including the road name, village and postcode. Fair play to Royal Mail for finding me! They do have a nice flat top which protrudes less under clothing. I think I might go back to my old trick of cutting down a tight fitting lyra vest to wear like a corset to flatten everything down under my other clothes. It tends to smooth things out and make less clothes redundant. I don't care that people know I have a stoma, but who wants to look anything other than normal with flattering clothes?

Nothing has moved from the redundant portion of descending colon and j-pouch - which is good, physically, but psychologically, I know it's there and at some point they'll have to put a tube into the mucus side of my stoma and flush it out - Sarah says I'll need to be "quite strong and well" to go through that process as it will cause cramping....naively I'd thought I'd have an enema...but thinking about it they are hell so I'm not so bothered about waiting. I asked why on earth they hadn't given me bowel prep since it was planned surgery. She said she didn't think I'd have been able to cope with even bowel prep, I was just too ill and weak. It choked me a bit to think that after all the preps I've had over the last 4 years that I was so ill, it was a better option to leave the waste inside? I don't think I ever thought I was in real danger at the time, I was too exhausted and upset most of the time. Probably just as well?

My usual district nurse came to see me on Thursday and sorted out my repeat prescription for HRT and my "crack" patches, I'm alright for crack lollies - don't like using those. She's going to chase up my referral to the hospice after Christmas and I really hope they'll be able to help with the pain. Thursday night some friends came over and brought a stack of DVDs to watch so I don't think even festive TV will get to me, entertainment wise I've plenty to keep me occupied. I've had quite a few phone calls too which break the day up a bit, even though I've not much to tell, it makes the days a little brighter.

Yesterday - Friday, finally time to take the two sutures out (I still can see some white dissolving ones but they don't seem to be causing a problem at the moment). Sarah had warned me to take some pain relief, which I forgot. As it turned out I didn't feel a thing! Either the Fentanyl works for stitch removal or the peristomal skin has no feeling, either way I was thrilled. The horrible snatching sound the stitches make against the tiny curved scalpel is horrible, a bit like nails on a chalkboard, I really don't like it, every time it slips and doesn't cut through. Obviously Fatty, being a delicate thing, bled a bit just at the slightest touch of the plastic tweezers, despite my efforts to cover and protect him with a dry wipe - pathetic show on his part I thought. So I'm stocked up with more base plates and bags for over Christmas and New Year and we'll hope for more shrinkage. For underclothing bulges, less is more. What's the point in being a size 8-10 at 40 and not being able to make the most of looking like a stick?

So that's where I'm at. Started back on taking my usual vitamins and supplements (B complex, selenium, choline inositol, fish oils, CQ10, I think that's about it....) this week and also managed to cook some nut loaf which was SO tasty I kept picking at it all evening and spent a night awake emptying air out of the bag - Fatty was in shock at the volume of food and me eating brocolli. Subsequent meals haven't produced as much air so hopefully I'll be able to increase the "windy" veg without too much drama. I'm still on a very basic bread, soup, crumpets, fruit, mash diet but starting to increase veg now things are working properly. Fibre means - shorter nights, fuller bags and many trips to the toilet, veg means health. It's a case of weaning slowly and eating whatever I fancy still, but I think I felt hungry yesterday - bit weird, not had that sensation for months and months, but I took notice and kept eating.

Congratulations to Tony for passing his bike test and to Carole for getting her stitches out.

I can't have a bath since it's so horribly scale damaged it's not been connected to water when I had central heating installed (bathroom revamp was due but cancer got in the way) so it's just a large shower tray. I quite fancy a large bubble bath myself (with stupid plastic bath guard on my arm of course) it's less effort than standing!


Anonymous said...

I'm sure I don't need to tell you you're amazing. I'm glad you seem to have reached an understanding with Fatty. Vegan considerations aside, is nutloaf really a good idea?! It is worse than sprouts for noxious bottie gas, imho. :-)

Played "hide the camera" with the knife man yesterday, all was well (except I hoyed up post op broccoli soup, proper Exorcist style, spoiling my hardass "I know the drill" act...)

We give good bubble bath at Faerie Towers, I had a whirlpool fing fitted because I am a lush and love a G&T au bain. Come visit when you're up to it and let me know if you feel like another meeting of the BB Boston branch... :-)

Much love, Faerie X

Loopy said...

Well, I don't need telling anything, but I do like it :o)

Honestly, I blamed the nut loaf but having eaten it again since (made two loaves and froze several portions) without brocolli, it's either the broc or that combined with the fact that ate the first lot whilst on the phone to Auntie Moo - taking in additional air. Had normal air in bag issues since then - i.e. no issues!

Given your post camera trick, I think I may have to revisit my opinions on the green tree veg!

I have no idea when I'll be up to a schlep over the penines, will see how I feel after New Year because I'll certainly be wanting a change of scenery having been housebound for so long (better than hospital bound of course).

Look forward to the bubbles and might even lush it up with a glass of G&T myself!

Tony Songhurst said...

Thanks for the update and the congrats...

Yep it is official 'You are amazing!'

I am to start a combo of Evil Irene (on my 3rd dose Fri) with Avastin in 3 weeks, do you know anything on this one?

I remember glasses of red wine or a drop of whisky seemed to fill stanley up to the brim, I also had two pieces purely due to the volume of liquid output!! Much Easier also with a tap on the bottom so you can let the stuff out (if liquid) and flush some water through...

Still bloody awake as the steroids have made my eyes not want to close for the second night on the trot!!!

So what is the plan for Christmas?

Much Love

T xxx

Loopy said...

I refuse steroids - I don't need sleep deprivation on top of everything else with chemo.

Avastin I know about, my onco however is so slow, I ended up telling him about the fund. We discussed it, he's not applied for it - not got an appointment with him yet since treatment is on hold and when I saw him in hospital obviously the surgery and my neutropenia was more important to discuss. I thought I'd see how the first half of chemo went and then try and nag him into sorting Avastin out, if not for this round then for future chemo.

Obviously I've not got an ileo this time so there's not much in the way of liquid and I stopped drinking alcohol. I have had the odd swig of brandy my Aunty sent before bed, not even a measure but it felt medicinal :o)

I don't plan Christmas - it's not really something I'm big on. Will have dinner at my sister's and kids coming Boxing day (well 26th anyway). Have a couple of visitors likely to pop in (best friend from France included) so it will be less lonely than usual.

I'm considering getting the tree out of its cupboard, since I'm not doing anything - any kind of activity is exercise!

Sue said...

You don't need to cut down vests, you can get waistbands on prescription, in black, nude and white I think, which are made of lycra and do the same thing. I can't remember who does them, but if you search on the IA forum there's a few posts about them.

Loopy said...

Thanks Sue - I never bothered last time so forgotten about all the extras you can get on script. I think because it was only for 9 months before I wasn't so fussed but this is twice the size and I'm hoping to prevent hernias by getting back to yoga - done 10 mins last two days and so far so good. Flattening down is the main reason for a waistband because it's higher than my belly button :-/ not so easy to diguise.

Tony Songhurst said...

My Avastin was amazingly quick...I took it upon myself to have two consultations, one privately in Harley Street (which was over the phone) - Dr Nicky Maisey was great and sent me a write up of our 30 minute discussion. It had several other drugs and methods which mapped out a whole treatment plan. I then travelled to the UCH in London with Fran and we saw a Prof Daniel Hochhauser on the NHS who said almost exactly the same as the other chap..(I purposely didn't tell him until afterwards as didn't want to influence his judgement). Both of the second opinions sent a good letter of recommendations to my Oncologist at Weston Park.

I found the 2nd Opinions and approached them and all they needed was a referral letter from my Onco which she freely gave...

When I saw her 3 weeks ago she had one of the letters and we discussed Avastin - she is so pro-active and when I saw her last Thursday she had already applied and got the funding approved.

You can get almost anything on the scripts now days...My NHS team sent me an invite for a Stoma fair in Chesterfield where all the stands were manned by smart and pretty people in suits selling their wares - most strange, however it was great as I could get some high waistband boxer type things with a pouch on the inside for the bag and enough height to hold everything flat...unfortunately I couldn't use them as my output was so crazy the bag would have explode and Stanley would have leaked everywhere.

Get a photo up of the tree would be great to see the festive spirit!

All the best

T x

Loopy said...

Yes I remember reading you'd sought other opinions. I'm not sure why I'm not in a hurry to push for the Avastin, maybe I believe it's going to be a long time before things get big enough to warrant the extra help or I'm lazy!

I actually have a link to all products available on prescription if anyone needs it. Hefty document but if your adhesive remover isn't great for example, you can find codes for alternatives to give your supplier which I did make use of before. I shall post pic of tree just for you :-)