Showing posts with label nerve damage. Show all posts
Showing posts with label nerve damage. Show all posts

Thursday, 13 March 2008

2008 Mar 13th - Progress Update

Tomorrow will be three weeks since Mr A chopped of my PTW and threw him away!

I've been home for ten days now and for 9 of those have progressed from liquid waste to solid waste, albeit I never pass anything larger than my thumb. I just have to pass about twenty of them to empty! That's on a good clear out visit to the loo - I'm getting better at having a couple of those a day and then the odd mini clear out when I go for a wee if I feel the urge.

I'd say I'm getting down to about 5 times a day now, but the most was really 7 or 8 once my colon remembered what it's bloody job was! My main problem is the pain. Every time some air tries to escape I'm rooted to the spot clinging to the nearest grabbable object or I lie on the bed or sofa. Initially when I go to the loo it hurts too. It's the same passing broke glass pain I had during those months of radiation and waiting for surgery last year. To be fair it's not as bad because. like I said I'm only passing things the size of my thumb. The radiation damage, I'm guessing, isn't going to get any better. I have read that some people are given anal dilators as well as vaginal dilators after low pelvic radiation because of the massive shrinking that occurs. The thought of my surgeon doing further digital examinations makes me cry so it's going take a bloody good case to convince me that dilating my burned, shrunk, chopped up arse is a good idea.

It might be just inflammation and maybe I can get something for it. I'm just putting off calling my colorectal nurse until next week in case it means a physical examination. The pain isn't constant, but it's pretty frequent. It keeps me awake at night until I give in, get up and try and pass more air and stools. I suppose I should stop eating earlier in the evening? There is a constant dull throb which has been present for about the last 13 months where the "action" was for radiation and surgery.

My little wound where PTW was is healing very well. I've got the oddest shaped abdomen ever! There are lumps and bumps and dents all over the place. I am quite pleased to report that I have in fact lost some weight again! Becky insisted I looked a lot thinner after about a week on drip only diet - to be expected I guess but my scales said otherwise, until today! Also after I checked what I did weigh before I went in (which in my head I'd reduced but had written down somewhere else as evidence of my poor diet) ............and I've lost 9 pounds! Ooer! I hope it's fat off my thighs and not any of the muscle I managed to build up at the gym.

As you can probably make out, there is still some yellow bruising to the centre of my belly and I do still feel some tightness when I turn over in bed. The majority of the scab has gone but I think it'll be another couple of weeks before there is delicate new skin and no scabs. I'm patting some Bio Oil in when I remember in the hope that it doesn't cause me any trouble when I get back into wearing my jeans on a regular basis - I'm still wearing low rise joggers and big t-shirts (for decorating also) to avoid putting any unnecessary pressure on the scar.

If those of you who still have a rectum, or managed to escape radiation have a reversal coming up then I can say I would recommend going for reversal. I had an awful time in hospital, I really did think I'd be heading back to theatre for a permanent colostomy or ileostomy if my colon refused to work, I was scared of food and the future yet again. I'm still holding in the back of my mind the thought that I've got another liver scan coming up in a month or two because they're being cautious over the "chemo damage" streaks and want to make sure that's exactly what it is.

Still, even with the pain, which I'm sure can be reduced by some treatment, if not eradicated completely, I think I'd rather have this and have the chance to wear what I want again. On a more positive note the pain in my butt does take my attention away from the stabbing shooting pains in my feet and the horrible, shudder inducing numbness and soreness that is peripheral neuropathy. I had thought I'd be handing my blue badge back sometime soon, but my feet are so sore and painful I'm keeping it.

Saturday, 19 January 2008

2007 Jun 23rd - Nerve Damage

Saturday, June 23, 2007


Ouch my sodding right arm..........
Category: Life

I've been out of hospital for just over a week now, chez maman. Still not sleeping more than 2 hours at a time, I'm desperately tired but I'm not sure if it's all post op tiredness or lack of sleep tiredness or lack of excercise - it must be a combination of all three but I'm sure I'd feel better if I could just SLEEP.

Usually I wake at 1am, 3am, 5am, 7am and then drag myself out of bed around 9 - 10am. It's not that the bag needs emptying, I just do that once at the 3/4am wake up. Sleeping tablets in hospital didn't work, they never have done anyway.

So far I've braved the shower twice to wash my hair and for some reason best known to myself, despite the fact that this wears me out I change the bag afterwards so everything is clean - which kills my back with the effort of bending over to look at it and make sure I'm doing it right. It takes me 20-30 minutes still because of the sore skin and just because I tire so easily. Afterwards I had to have a lie down for an hour before drying off my hair. Luckily little sis came over and straightened my hair for me so I look presentable again - well as presentable as you can wearing a £3 Matalan nightie, slippers, a stoop and a grimace................

My right arm seems to have some proper nerve damage which I think is a trapped nerve, not helped I'm sure by poking of cannulas at various angles through different holes in the crook of my elbow. This is also the chemo arm with damaged vein. Certain movements like reaching for a glass send a shooting hot stabbing pain into the base of my thumb and wrist, not convinced typing is helping, but resting it didn't make it go away either!

The stitches are getting annoying now, they tickle and itch. The two external loops attached to the stitches inside (not visible, they're all hidden) will need to be cut and then pulled through - this causes a "strange" sensation (I'm thinking the sort of sensation that makes you want to vomit, plus some pain - have been advised by nurse to use breathing techniques adopted for childbirth ). Thing is the bag, knickers and clothes all catch on the damn things and then it's a bit sore. Also NONE of my normal underwear is much use, it all catches on one of the loops and a bit of the scar that went a bit gammy (proper medical term, that) or they cut off the flow of the bag which is also useless. I've done some browsing of apple-catcher style knickers - but they're just not for me so hopefully once the stitches are out, usual skimpy affairs will be suitable.

I'm eating properly now so that's good..........ooo Hayley is at the door must go!!!!!!

10:37 - 4 Comments - 0 Kudos - Add Comment - Edit - Remove

Peter

Lisa,

You DO sound a bit better now which is good news. You've just been through something which is still to come for me (on August 1st if all goes to plan) and I'm heartened by your ability to stay upbeat.

The "strange sensation" when they pull out the loops is just another example of the "Estate Agent speak" which the medical profession have adopted. Why don't they just tell the truth?

I don't recommend the following site but it may have it's practical side! http://www.whiterosecollection.com/

Keep up the good spirits,

Peter

Posted by Peter on Saturday, June 23, 2007 at 11:37
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Caroline

Ouch Lisa - still getting pain - sorry to hear that sweetie. It may be beneficial for you to ask for something a little stronger. The tiredness and sleep pattern will continue for a little while yet - I was like that for about 4 weeks post op, but eventually settled into a routine sleeping about 6 hours at night and than a couple of hours in the afternoon. Just listen to your body and go with the flow - even if your rests are just 2 hours at a time - the main thing is your resting.

About suitable underwear for your stoma - unfortunately the only briefs that work for me without restricting the bag is the full briefs! M&S do some nice cotton ones - pretty patterns/plain packs - highly recommend these. I did get a couple of pairs from Rosewhite Collection, but thought they were pretty expensive for what they were at £12 per pair! Try the fuller briefs from M&S just for a trail - no they are not glamourous but they are functional and comfy for your stoma. Honest!!

Hugs to you Lisa and take care.
Cazx

Posted by Caroline on Saturday, June 23, 2007 at 12:00
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Lisa Left Eye Loopylalalalala

Hi Caz

I'll hang on in there and hope for a 3 or 4 hour stretch in a week or two then. It's not upsetting me really because I don't do much all day yet, but I can't because I'm so tired, bit chicken and egg isn't it!

I haven't been taking any pain relief for a few days now, apart from the odd paracetamol at bedtime, but even the stronger ones didn't take the pain from my arm, it's very, very annoying!

I suppose I could just wear big pants whilst I've got PTW and the bag.......... I mean I can't see me meeting Mr Right, or even another Mr Temporarily Appearing To Be OK at this point in my life. Most of my problem is being so tall even waist highs don't come up high enough on me, I've got a long body - I know this as I've treid some of mum's old ones in desperation.

The only people who see my undies these days are nurses, doctors or anyone who wants a shuftie at my scar...........oh and thanks enormously to my lady garden hair which dropped out during radiation to start growing back DURING the time I had a dressing all over it and stitches which hurt like hell when it was removed. Surgeon must have thought I'd shaved myself in advance to save them the bother in theatre ;o)

Posted by Lisa Left Eye Loopylalalalala on Saturday, June 23, 2007 at 17:08
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janey jane jane

Hey I have an Idea regarding the pants situation. Get some big pants that come up your tum Simon Cowell style, but cut the bum out into a thong. I bet they've not seen owt like that in the hospital! xxx

Posted by janey jane jane on Monday, June 25, 2007 at 18:40