I'm pleased to say I've started going back to the gym again. I went nearly two weeks ago on Tuesday 25th March, just a month after my operation, just to do some cardio and a couple of resistance exercises on equipment not to mention a few squats. I went again on the Saturday and then this week on Wednesday when I pulled out all the stops and did quite a few more exercises, especially on my blancmange thighs. I didn't walk well before, but my legs have definitely been protesting the last two days! Still I might drag myself back there tonight because I had a month off and I am on a mission to speed up my general recovery.
My feet are much, much worse and I really do think I might have permanent damage now. The areas of pain are increasing and I can't even stretch my legs without feeling like something is tearing or burning inside my heels and the sides of my feet or my right big toe! That's just not right is it? Thinking about it, things took a turn for the worse when I saw Dr Tom the oncologist just before surgery and he said not to bother with the Pyridoxine (B6) any more as it was only useful whilst ON chemotherapy. So was it just coincidence that when I stopped taking it things went downhill? Hmm. Poking about reading experiences from other sufferers I'm not sure so I've started taking them again, having just got a prescription filled when I stopped. I'll give it a couple of weeks and then I'm seeing Tom again so hopefully I'll have more news.
I can't remember if I mentioned in my last post that I'll be having my "1 year post op" scan at the beginning of June (ish) at which point I might finally be able to get the champagne out and celebrate being in remission or NED (no evidence of disease). Those damn spots on my liver are still a cloud hanging over me dangling the threat of Stage 4 (no stage 5 remember). At what point can I actually start getting on with my life? If the scan shows no more spots it means they were chemo damage and my liver has healed itself, if not, well I can't really be bothered to contemplate the options too much, more surgery, more chemo, radio frequency ablation?
Don't get me wrong, it's not really worrying me. There's no point worrying, it won't change anything and if all is well I'll have stressed my mind and body out for another few months for no reason at all! That's just silly! So as Angela once said: "I refuse to get excited until I know there is actually a problem". Good advice there.
Speaking of Angela, we braved the bright lights of Boston town on Saturday after I had been to the gym, dismantled a high sleeper bed and constructed a single bed to replace it...........(yeah wonder woman, that's me). Three glasses of wine, chips and mayo, a cab ride home and a chocolate eclair (bought from the kebab shop no less!) later.................I discovered red wine and my new internal system do not agree. I was up with diarrhoea a couple of hours after going to bed, the likes of which I hadn't really experienced since Tyson was still in residence.
Just in case it wasn't the wine, I had two glasses last night. It was the wine.
Onto the title of this post......insurance.
I got a letter in the post today with a copy of my anaesthetist's bill for £165 as a private patient telling me that my private health insurance cover (provided by my employer) expired on 31st January 2008. Remember the advice on not getting excited until you know there is a problem? I'm pleased to say I sat down and thought about it calmly before ringing work's HR department who rang our benefits department immediately. I wasn't in a panic because I rang the helpline in February to check I was covered for my ileostomy reversal and they said yes! After they refused to pay for the creation of my J-pouch I wasn't risking anything. Luckily it turns out our policies were transferred to BUPA so I am in fact still covered. I guess it's all part of the buy out of the company and major shareholder that took place around the same time.
Oh and more news - I'm going back to work on 23rd April. EEK!
I'm going to try three days that week and then do a couple of days a week after that to start with and see how I go from there. I am questioning the sense behind an early return, not because of my energy levels, but because the weather is improving and I could actually spend some time in the garden this year without being in pain or attached to chemicals or just feeling too damn ill. I need to get amongst people though. I have been holed up in this house for 13 months now and I'm going a bit stir crazy. Getting out to the gym is good, there are at least real people there even if I only know two or three to talk to, it makes me feel a little more like I'm part of society and not some imperfect outcast.
I'm going to treat myself now and watch Loose Women with a mug of something hot before I go and do some shopping (nice shopping, not groceries). I want some pretty things for my bedroom now it's decorated (just one wall of skirting and a small hole to fill and I'm done. I want a new pole, curtains and mirror and maybe something decorative on the walls. I might even post some before and after photos at some point...........oh god the before picture is horrid, it's going to make anything I've done look marvelous, sorry anything MIKE did.
Showing posts with label ct scan. Show all posts
Showing posts with label ct scan. Show all posts
Friday, 4 April 2008
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 shape
d 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 u
p 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.
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 shape
d 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 u
p 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 Feb 21st - New Tattoos on the NHS!
Wednesday, February 21, 2007
| Debagged........and no Dr Tom
http://www.medguard.net/products.html since it appears to cut off the cirulation in my arm after a few seconds and I'm not THAT fast in the shower. Managed to keep the arm dry but got my hair wet grrrr, it didn't need washing. Ummed and ahhed and chose to wear my Monsoon top - chocolate linen/silk mix with lime appliqued flowers on and a wraparound. The line was nicely hidden mostly apart from my entire arm but then I'd have my coat on too. My nicest newest whitest lacy white short pants were called for - therefore matching bra - they won't need to see that will they? I know it's a bit Judy Finnegan but still. Got to Lincoln early and sat down with a coffee for five minutes, then got called, half an hour early! Handed over the wad of notes which they were pleased about and sat down with the lovely Ellen? for a chat. She must have had this chat umpteen times but it came across as an original conversation just between us, I like her, not least because when I mentioned it was just me and my daughter at home she assumed she'd be about 4 not 14. Down to business then, boots off - revealing unshaven legs and navy socks - at least the brown skirt matched my top After five minutes chilling out with my nekkid bum in the air my tall dark young male student runs around the bed marking Xs on my backside and then again with the tattoo gun - not as creative as the existing tattoo, just three small dots, but still they were free! Six hands prised me off the bed - well four as two were holding the chemo pump - into a kneeling position where I adjusted my clothing - picture the scene - pump held aloft by one, student averting eyes but making sure I don't fall off on one side, other woman on the other side making sure I don't fall off. Judy Finnegan bra revealed for all to see as are all my other bits - pants around thighs with skirt. Funny I did my top up first - do I have no shame? So white underwear, dark brown clothing and navy men's socks (size 9 feet what can I do) ladies and gentlemen STYLE and DIGNITY have LEFT the building, I repeat LEFT the building. After putting my boots, coat and scarf on - managing not to get entangled with the line I went out to finish my coffee and off to town. Blue Banana was our first destination after lunch (mmm stilton and bacon jacket) for Karys's birthday coat (remember Attitude Clothing - pah) for £13 less than original and it's really nice thick fabric too. Karys was being shy and I made her ask the man with blue hair (I did HAVE to tell him that was the blue I had on my black and blue mohican) if they had any girls coats, and AS I said the coats she insisted were boys were in fact unisex, Duh, don't she know nuffin? Bought some very cheap basics in Primark and energy was all but sapped leaving New Look empty handed. Felt rough over lunch and on the way home but as Monday and Tuesday - loo trips seem to sort it out, it's not chemo related so must just be Tyson. Very icy feet and feeling tired are the only things like symptoms from chemo so far, but only had a little over 33 hours so far, so about 16.5ml/84ml of week one. P.S Tyson says "help me I'm meeeeelting" 23:15 - 4 Comments - 0 Kudos - Add Comment - Edit - Remove |
determined 
Up at a decent hour this morning, took my New Best Friend to the bathroom with me and spent a good few minutes trying different arrangments to keep it dry and out of harms way whilst allowing me to shower without practising contortion techniques. The line was too short to go over the shower curtain rail for the pump to rest in the sink, the windowsill was too risky as it was wet and slippery and also behind me. Finally I hooked the shoulder bag (thanks mum) over the curtain rail and the pump stayed suspended behind the curtain out of harms way. I didn't use the bathguard - see link
. Another female radiographer and male student appeared to help me lie on the bed face down - with cushions for my face, knees and ankles. Arms above head, wasn't working in that top! I could feel my line being squished under the sleeve which was tightened at that angle so I had to undo it 
- Ellen had hold of my pump in the bag, the other two were helping line me up in the laser beams (hit me, hit me, hit me, hit me, hit me with your laser beam - says Frankie) and pulled down my skirt and pants - bet they were glad I showered. They put what I imagined were post-it notes on my bum and lower back either side - they called them markers but I just know they use post its 
NHS cuts and all that. Oh and a special marker made of wire?? to mark my bumhole, nice. They all ran off to the adjoining room while I went through the doughnut again (CT scanner).
 | janey jane jane   |
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| Billy Bollockchops  |
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| Lisa Left Eye Loopylalalalala  |
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| Billy Bollockchops |
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2007 Feb 20th - Chemo Round 1 No 1
Tuesday, February 20, 2007
| All drugged with no place to go...... Well after crying most of Friday and a bit of Saturday morning (sorry Karys for ruining your thick layers of eyeliner) I was just exhausted by Saturday afternoon, the PICC arm has been sore, very tight over my upper arm and a red patch of skin has appeared. It got worse over Sunday and having been in bed all day (really really not feeling great) I rang the hospital to check - you know in case it just fell off in the night or something! Apparently so long as my arm or hand doesn't swell up and my temp stays down I'll be OK. It's just my body saying - "Oi, what's this thing in me arm - it's name's not down, it's not coming in!" - but in it's staying! Monday I felt queasy and just "wrong" inside, I blame my hormones as well as Tyson, same again today, but then I didn't sleep much - was up at 2am making hot chocolate and eating a mince pie. Looked rough as a badger's proverbial this morning and I had only just rolled out of bed when mum arrived. Oops. I am now lying in bed with half my lower arm covered in gauze and clear waterproof dressings holding the PICC and pump connectors safely in place - I'm on 0.5ml an hour. I know this because there is a little air filter with a purple sticker on it telling me so! Not really anything to report but I do feel as though I have slush puppy running through my veins instead of blood, most peculiar! The heating is on, but not been on long so not sure if it's normal cold or chemo cold. My pump, what shall we call the pump? Any ideas? I'm thinking Percival, Percy for short.........but I'm open to suggestions, just put your name and address and your idea on a postcard and send it to "Name that Pump" PO Here's a thought, if this pump dispenses drugs all this time, does that make it a pharmacist? It looks like one of those round smoke detectors you get in multiple occupancy dwellings and has a coiled up tube of drugs that just get squeezed out and triggered by a connector that reacts to my body heat, how cool is that, batteries not included as they're not required. My planning scan appointment at Lincoln arrived today - 11.30 so an early start then, since we have to find the place, I have my hospital notes in a massive brown envelope to take with me since there's no time for a courier. Got to put my hands back under the duvet now and get some rest - hopefully I'll sleep better tonight because I might see the lovely Dr Tom S and I must look my best! 16:46 - 1 Comments - 0 Kudos - Add Comment - Edit - Remove |
| Umpalumpa  |
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2006 Dec 29th - CT Scan
Friday, December 29, 2006
| Oh Doctor I do feel faint......! Well the big(ish) day arrived - manged to get up 20 minutes before I had to stop eating - thickie, why didn't I set an alarm? Shoved two malted milk down with a mug of tea and felt full anyway. Ponced about on t'internet and drove to sister's for "Taxi to Tomogrophy". Bloody good plan as it turned out! Usual walking round corridors for a few miles (follow the yellow brick road) and tried to check in at x-ray first doh! Signed the usual paperwork, checked the usual questions and start drinking the barium stuff....15.15 and some more at 15.30 and more at 15.45 - no honestly you won't have white poo afterwards and finally another one at 16.00. Amazing man had a scan before me on his head - his wife was telling us he'd crashed in his lorry and had skin taken from his legs leaving red raw patches (including little R on his right leg!!!) to patch up his mashe up arm - window glass had torn right into muscle in places OUCH! But that apart he'd had a MASSIVE flap of skin cut off his scalp and folded over to cover the chunk he'd lost out of his head. I'd thought he had cancer and losing his hair since he had a sort of surgical stocking looking beanie on his head! He'd collapsed that morning and had odd dizzy spells before, his wife was worried sick and worn out with worrying about him and the fact that they were lucky he was still alive. He seemed in great spirits, considering the physical scars he must still be in some serious pain - it only happened in November. Tyson doesn't seem to like it as much as you'd think, getting a bit grumbly but then it's the first thing since the malted milk with any substance other than water. Fab nursing staff on duty today - offered to take me to a cubicle to change me, I asked if she could change me into a supermodel, but all I got was a hospital gown and robe - knee length which looked absolutely stunning with my knee high leather boots I must say. I noticed I had little round blue URGENT 2 week wait stickers on my notes (two week wait is for people with suspected cancer - given the 2 to three week wait for any results it's just as well). Time for the line so they can put the contrast medium in later on. Dr asked if I've had chemo yet.........erm no I'm still waiting for the biopsy results to see what treatment I'll have. You'd think that would upset me but really, it didn't - very odd. I can't be in denial..and talking about it surely? It seemed like a perfectly normal question really, I know repeated lines can harden your veins so it makes it tricky - anyway it wasn't going in too well he was fiddling with it and I had a "blockage".... feeling a bit queer down below - hot and like I could really do with the loo but oh hang on no, I'm getting the sweats and feel really, really dizzy - head between the knees! Because I'm a PP (private patient) I get a Dr to put my line in, instead of a nurse - now I don't care who cares for me so long as they know what they're doing, I tried to persuade the doc to go off and have a cup of tea as I'm sure the nurses are more than capable, but standard practice and all that. Poor bloke, they said it must have been his stunning good looks that made me faint, poor sis thought I was doubled over crying and rushed over only to end up helping me to the bed looking like death (not even slightly warmed up!) By this time I've got two nurses - one taking my BP, the doctor checking my pulse and my poor little sister looking worried, and she was only there for company for a scan and be the driver - you're not allowed to drive for an hour after the contrast stuff. Second line in my other arm wasn't a problem phew! Scanner is quite impressive - just a very thin bed on wheels (not long enough) that moves in and out of a massive doughnut. Breathe in - hold breath "snap" breathe out, couple more of those and then it's time for the hot stuff - I've had this a couple of times before when I've had kidney x-rays it basically goes into your blood stream and as it's going around it's really hot, so think about where you've got a lot of red skin - like inside your mouth........that's really hot and after a few seconds it feels like you've wet yourself. Never happens and I was a bit of an old hat so not bothered by it. More pics - just a whizzy camera flying around your body in the doughnut that you can just make out. Pretty noisy like sitting near a refridgerated artic. I had a brief whinge about the idiot Dr Kiss of Death at the surgery to the radiologist who removed the canula. She was suitably appalled. She was lovely too, was asking about the tumour and if I was in pain, how long I'd had symptoms etc. The more I think about it the further back I can remember having odd bleeds but putting it down to piles - bane of most pregnant women and mothers. Line came out as easily as it went in, but am warned not to leave the hospital until I've had a cup of tea and a sandwich at least and to go to A&E if I feel at all unwell. I bought a piece of cake too but only managed the sarnie - tut! Poor stomach doesn't know what to do, stuffed to bursting on Christmas day and randomly starved on others. I've been "entertaining" Mike for a couple of days, basically involving eating and drinking beer, but we did throw together some fab curry dishes for about £3 instead of wasting a small fortune on a take away. Been shopping today and for a lazy lunch Oldrids cafe! Determined to sort the laundry and a bit of decorating prep before the new year.........but if not I'm gonna pay someone else to do it haha!
18:47 - 4 Comments - 0 Kudos - Add Comment - Edit - Remove |
| Billy Bollockchops |
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| Lisa Left Eye Loopylalalalala |
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| Billy Bollockchops |
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| Hayley  |
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If you didnt laugh, you'd cry. Anytime Tyson fancies some french cuisine all you have to do is book a ticket - I'll collect you from airport, supply bed and board and all the red wine you can drink (just the cheap stuff though!)
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