Friday, 4 April 2008
2008 Apr 4th - Insurance.........or lack of!
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.
Sunday, 20 January 2008
2007 Aug 29th - I Hate Chemo
Wednesday, August 29, 2007
| I can almost hear the chemo whispering in the bushes.... I'm supposed to be having chemo number 4/12 on Monday and already I'm dreading it, not least because I still get spazzy hands and feet and face if the temperature drops enough - good reason to stay in bed though! Saw my lovely surgeon Mr A yesterday. I couldn't find my appointment card but knew it was 12 something ........maybe 12.45.......? Rather than ring up I thought I'd make a day of it (free parking in the private car park, or with my disabled badge - wouldn't you? No...? Just me then.) I arrived at 12 just to check in - I was right it was 12.45 so I wandered off down to the restaurant for a veggie lasagne and black weak tea - I was feeling weak and a bit wobbly so couldn't face cowjuice. The lasagne was disappointing - it was peas, sweetcorn, diced carrots. I was expecting aubergine, courgette and tomatoes To balance the gloom there was a seriously cute baby boy in a high chair. He was with (I'm guessing here obiously) his mum and his grandma. His gran opened his sandwiches (like me she took home made food for the baby not that horrid muck in jars which my kids never liked on the odd emergency occassion) and offered him a finger shaped sandwich, so he vey gently opened his mouth. She was trying to get him to hold it himself but he was feeling like some pampering I think. They laughed, the nurses on the next table laughed, I laughed. The baby boys eyes opened even wider and he smiled. The same thing happened three times before he eventually grasped the food in his little hand. Faith in life being a precious and happy thing restored I shelved my tray and returned to the Bostonian. The younger receptionist was going through checking where Mr A was in his list...she said "I know Lisa...........are you Mr X?" to the other chap in the waiting room. I asked if that meant I'd been there too often since she knew me by sight. The reply was "Oh you're family now Lisa!" which made me feel all sort of happy in a weird way. I told her she'll be seeing me for at least another year yet! Mr A always comes out to greet his patients, which is just the sort of professional but caring chap he is. He told me what I was dreading, but expecting - he needed to check my wounds external AND internal Not much to check on my tummy - it's a great scar as they go, I have an extra bellybutton now (well it looks like that) but it's a neat job. Assume the position (kissed my knees) and remember the antenatal classes - they came in handy for stitch removal. The nurse had a reassuring (restraining?) hand on my shoulder as the old digital exam took place and I said OW .........a lot. Now I wasn't looking forward to it, but still hoped it wouln't hurt THAT much. I know where he was feeling was where I had a whole organ removed together with the surrounding mass of fatty tissue. I know that in it's place is a J shaped wiggle of carefully stitched "neo rectum" created from some of my colon to try and give me some quality of life in the future. I know that joining the rectal stump and my colon is row upon row of tiny staples. I also know a few of fallen out. I did not know how much it would bloody hurt! After that it was up to me if I had the scope (in for a penny.....) oh bejesus why did I agree to that? I'd forgotten about the air they have to inflate you with ( Now when the head honcho and colorectal surgeon tells you to take the chemo it means he knows you should take the chemo. It means he's basing his advice on decades of experience. Most of his patients are 30 years older than me and will some will die from other health problems before cancer recurrence gets them. One of the friendliest nurses when I was incarcerated had breast cancer 9 years ago. She was one of the few people I offloaded my true fears on, she knows how it is. She knows people who have had a recurrence from breast cancer after 22 years. We both know we'll always have a shadow following us - but it's mind over matter whether you stay in it's shadow. I'm trying to stay in the sunshine! If I can get through the next two years without any shadows on my scans maybe I can chill out a bit more, that's when colorectal cancer usually comes out of hiding to bite you on the proverbial again. Like I said I was making a day of it so after shaking Mr A's hand I went to the chemo suite to check on my appointment re EVIL CHEMO side effects. An appointment hadn't been made (I had a suspicion because it was fairly manic last time) but has now. While I was there I had my line flushed leaving me all day today to erm.......do absolutely nothing! The house is a mess, my room is the worst and I just can't do anything about it. My MacMillan nurse said someone described the lethargy that accompanies chemotherapy as a really heavy quilt that they just couldn't push off them. Oh well maybe I'll make the kids help after dinner.........
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Umpalumpa |
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2007 Aug 15th - Side Effects of Oxaliplatin
Wednesday, August 15, 2007
| Oxy Poxy..... Side Effects of OxaliplatinAlong with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention. Chuffing heck, I thought I was just being a bit dramatic and paranoid, maybe suffering from mild hypochondria, but no - everything I've experienced during the first 5 or 6 days of my treatment week is on this list! I've highlighted the ones I've had so far - mostly for my own benefit so I can compare next week for number 3. They say what doesn't kill you makes you stronger but I'm still not convinced that applies to chemotherapy. I haven't bothered with the 5FU side effects........but from past experience it makes you bloody tired. Add that to the insomnia and reduction in hormones - it's a wonder I'm not homicidal! More common
More Common
Some side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them: Less common
Other side effects not listed may also occur in some patients. If you notice any other effects, check with your healthcare professional. 17:33 - 4 Comments - 0 Kudos - Add Comment - Edit - Remove |
Umpalumpa |
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Lisa Left Eye Loopylalalalala |
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2007 Aug 9th - Chemo Round 2 No. 2
Thursday, August 09, 2007
| Chemo v Bum Bandit Round 2, days 1-4
Day 1 Chemo number 2/12. Arrived just in time for 10.30 appointment - whatever possessed me to book a morning slot I do not know. I think I thought I could make the most of the steroids and maybe not have another sleepless night on day one. WRONG. I'd not set my alarm properly so, thanks to the invention of baby wipes - the hot water having gone off an hour before, not having a shower wasn't such a problem. The kids were off into town, my son on his way home so I dropped them at the bus stop feeling pretty good after the weekend. Since I wanted to go on my own (and get a few hours in on SimCity on my DS if truth be known) I was invited to sit next to Richard - bang went my SimCity time. The time went really quickly, considering. Richard was a bowel cancer patient too, I knew this before we swapped stories because he had a tell tale Convatec stoma travel kit wallet on the table next to him. To the untrained eye it looks like a CD case. I felt I did my good deed for the day by giving him some samples and order codes which have made my life with a stoma easier. After an hour or two the throat prickling and constriction started again - I can tell when the room temperature water I take with me triggers it off. My hands started cramping up and twisting - no surprises yet then. Unfortunately my anti-emetics hadn't been put in my tray (we all have a plastic tray with our name on!) and by the time the drugs were in and my pump connected for the next couple of days the pharmacy was shut for lunch. I wasn't bothered, I'd left my ticket in the car, or so I thought, so went for a wander (wearing gloves to protect my hands from cool air and more pain and cramping). Well, I stood up...and nearly fell over! This time the effects spread to my feet and lower legs. My left foot permanently twisted inwards, I hobbled down the corridor, tube coming out of my arm, sleeveless summer top and woolly gloves. Must have been an interesting site......... I hadn't left my parking ticket in the car, I couldn't find it anywhere........drat! Never mind, I got another one from the machine! Genius. By this time, despite the warm sun the air had got to my throat and I'd started wheezing.....it got worse and worse....just as the Lone Ranger had said might happen. No panic, I just covered my mouth with woolly gloves until I'd breathed enough warm fluffy air to be able to breathe properly - getting some rather odd looks from passers by at this point, including a concerned nurse, but I was heading towards the hospital so she carried on. I met two more fellow bowel cancer patients but both times I could hardly speak so carried on staggering down the corridor. They were a bit concerned about how I'd get home, but they don't know me Pharmacy brought my drugs down, apologising and then I returned to my car. Heater on full blast - aimed at my feet for a couple of minutes and my feet decided to cooperate. I was melting on the entire journey home - my feet and hands and face need heat but that made the rest of me overheat, plus the odd hot flush - terrific. I can't stop sneezing and although I'm very tired, I can't sleep. I feel sick and my voice is all weird, breathing laboured. Nose running a lot again. Day 2 OW, OW, OW, OW. My legs don't work, they hurt too much, my hands up to my elbows and me feet up to my knees - hurt! Real deep muscle pains Day 3 For the love of God (not that I believe in God, but I like the saying), my legs still hurt. I still struggle to type - can't touch type too well so stabbing keys like an amateur, which I find immensely frustrating. I still feel sick, I wake up with what feels like a swollen tongue - this started on day two, which seems to numb all my taste buds. Jacket potato, bread, toast, crackers - all taste like raw bread dough. The only thing that makes toast palatable is marmite. At least it's got B vitamins in it! I try my usual home made protein drink of soya yoghurt, pureed tinned fruit in juice, cinnamon and a splash of boiled water - to bring the temperature up. It still freezes my top lip, tongue and inside my cheeks, making speech kinda tricky, not only do I walk like a drunk, I sound like one too. Quick trip to hospital to have pump disconnected - too grotty to mention side effects, I just want to go home and besides Sister Hylda was on her own with a ward full. She's retiring in a week or so (depending on cover) which is a shame, because she's fab! I got a bit wallowy in the evening and felt like I might benefit from a good feet stomping and a cry - however it still hurts like HELL to cry on day 3 and my legs do what the hell they like, cramping up and twisting at random moments. At one point I had to lean on my son to get from the sofa from the stairs to go to the loo - I could use the downstairs one but I also need to keep moving so upstairs it is. Moving warms things up and takes the pain off a little so it's worth the effort I think. I moan to a friend that I just want someone to look after me for ONE day. Not my mum or my sister, a partner, someone who knows me and cares. The way someone used to when I was ill.......I want that back, just for one day. To know that I can ask for anything, moan if they do it wrong, but know they'll be there all day at my disposal with good humour. Basically I want what I can't have, I want him back the way things were. Not for good, just one day. Normal people would probably just wish for a day off cancer treatment, so now I'm concerned about the chemobrain effects. Already words escape me - we played the "guess the word" game in the chemo suite - it's not so frustrating when you both have the same problem. The missing word on Monday was "Ashburton".....we knew it began with an A..........then I got Ash..........took about 5 minutes to get the whole word. Day 4 At last, some respite, legs only half as painful this morning. MacMillan nurse rang to arrange a visit and also a referral to the benefit specialist MacMillan nurse. Hands working pretty well so far, hence typing blog! Still feeling sick and having odd cramps in legs, but definitely wearing off. Managed a mug of tea and tin of chicken and veg soup so far, plus anti-emetics. Still need to take my other two drugs.......so I'll have to wait til my next hot drink is just warm.
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Dorothy |
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Lisa Left Eye Loopylalalalala |
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Lisa Left Eye Loopylalalalala |
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. I don't know why (well I think I do actually but won't go into that just now) but I was sat staring at the Mental Health Unit and got all teary. Also because the whole hospital means bad things right now, although Mr A has only really given me good news, despite being the confirmer of my diagnosis he had a plan and I knew he was the man for the job. Plus I knew it was cancer before he said the words so it didn't count.
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) it felt like I was going to be ripped open
. After MUCH exhaling slowly to avoid tensing up even more they stopped. Not sure what he saw and I didn't ask. I rarely ask him anything, I just trust him to tell me anything I do need to know. I see him again in 3 months - not a moment too soon. I told him how horrid the chemo was and that I'm seeing an oncologist this week before having any more, that I don't see how I can possibly manage 12 cycles at this point. If I had neuropathy from the first session so badly I think I'm really heading for permanent nerve damage. (Oh yes folks the side effects CAN be pemanent - as will anything cancer related there are NO guarantees or promises). He asked me to take as much chemo as I can and to take care of myself. 




urgh.
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) and tinned and fresh fruit. Oh, and ginger beer! Ginger gives a bit of a prickle anyway so even though room temperature liquids prickle my throat, it's not too noticable and does ease the nausea.

