sorted67's blog

wish they'd read the blood tests properly before sending me on my way

2011-03-07T07:10:41Z

got to ring docs - after sailing through my 3 month check on Tuesday, the letter to my gp arrived on saturday morning. It mentions normal bloods except for elevated alp of 143 and that they are waiting for an LDH test result. No mention on the day, the sw*ne. Was a new doc, so maybe he didn't realise til later but i've been gently stewing all weekend (because there's no-one to ring) and getting my head back in 'sensible cancer' mode. I know it's maybe to do with liver/bones - think my head's gonna explode if I don't tell someone haha x

Karen's Catch-Up #19

2010-08-27T02:40:08Z

For anyone who is having to deal with an idiot or two...

“A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort.”

well it made me laugh...

Karen's Catch-Up #18

2010-08-25T08:38:42Z

"Everything's fine and we don't need to see you for 3 months". Nice.

Karen's Catch-Up #17 - stem cell transplant part 4

2010-08-21T06:03:15Z

So life at home goes something like this

First two weeks - mainly in bed. Getting to the toilet takes ages, involves clinging to the walls for support and leaves me knackered. Can't get out of the (Hickman-free!) bath unaided. Still feeling sick - occasionally am sick. Still taking the caphosol just in case for the first week. Stop taking the anti-sickness after 10 days but that was too soon, so started again. am also taking Septrin to hopefully prevent pneumonia setting in - a possible side-effect of the treatment. This involves taking a pill the size of a big beetle (!) once aday, 3 days a week for 6 months. Visit Consultant - straightforward visit just to see how I looked. Fine. My Hickman wound is healing nicely. Stitches out. PET scan June time - have to wait til then for a trustworthy result.
Next 6 weeks - Gradually get my appetite back. Various cravings for foods. About a month before I'm eating 'normal' 3 meals a day type diet. start walking - 50 yard shuffle with P at first. Breathless, wobbly-legged and feeling sick but keep at it. Buy a pedometer and build up to 10000 steps.
PET scan June 1st - straightforward. resist the temptation to ask for a look...
June 15th - Results. Remission Day! An excited couple of days telling friends and family but I find I'm more excited for everyone else rather than myself. Sounds odd maybe - but everyone is so relieved and it's nice to be able to give them good news and the chance to 'exhale' if you see what I mean. The scan show's that there's still a shadow but with no activity. Ideally you don't want any shadow - but it was soo big to start with, i've never anticipated it just disappearing. Probably scar tissue and calcification was mentioned (need to clarify that) but all that aside - I am officially in the clear!!! He doesn't want to see me til end of August. I was more wary - scrub that - I got kind of superstitious about sharing the news on here because as coincidence would have it, I was due a smear test. Had the test, then waited for the results 2-3 weeks they said... Anyway, eventually got them and it was normal. So here is the news, haha!
June & July - walking. Can do 10k now without stopping and have set about losing some of the excess beef that's accumulated. Lads' exam season and OU course have kept my brain in gear - very hard to concentrate at the start but it's getting better. Went to school on the last day of term to say hello. It was Leavers' Assembly for the last class that I'd taught; nattering with staff and kids was great; went to Y6 disco and did the obligatory Teacher Dance - no YMCA but the Macarena, the Time warp(!) and Oops Upside Your Head. Oh yes! Feared for my wig during the last one as it nearly ended up in the unsuspecting grasp of the girl behind me :) Lasted the day which I was pleased about and drove the 45 minutes home. Not teaching but a start.
August - youngest is now 18 (made it!) and we had a party - bonfire, sausages, cake and sound system in the garden. Weather's been rubbish here since so my walking has faded to nothing for the last three weeks - got to keep it up...and start back on the healthy eating bit. Still can't drink red wine but for some reason cider works :)

Anyway, I'm back. Next appointment is on Tuesday. As far as I can tell, I'll be the first to know if anything changes (unless they get clues from the blood test?!?) and I feel pretty good right now so I'm not worried about it. Let's hope it continues.

Love

K xx

Karen's Catch-Up #16 - stem cell transplant part 3

2010-08-21T05:10:32Z

So been up since 3.30am and I'm still wide awake and now up and doing something that should have been done ages ago but wasn't because I wrote and 'lost 'it in March and couldn't face writing it again. I've just thought to look in the Recycle Bin...Hope it helps someone...

Monday February 22^nd

So when I said my temperature was normal, I lied J . It hit 38.5 during the night and although it dropped again at the next reading, they weren’t taking any chances and all the old favourite antibiotics came out - talk about kid in a sweetshop... In other news, my runs seem to be slowing down at last; my mouth is still ulcer-free (Demand Caphosol! Nicely!) and I drank some milk. Saw The Man who, I think, had been in touch with Newcastle to check on why they’d gone ahead despite infections. Apparently, they go on symptoms and as I didn’t have any at the time of the transplant, they went ahead. Similarly, the infections will be ‘officially’ gone when the symptoms stop. Kind of understand though still a bit “Hmm“. But, at this point, I Really Don’t Care.

Tuesday February 23^rd

Still no sign of more temperature spikes, my backside is definitely in a more forgiving mood and I’m a bit hungry!!! Asked for a weetabix in loads of milk. I thought I’d be able to slurp that down if not eat it exactly. It was like the Magic Porridge Pot - the bloody bowl never emptied - I ate for 75 minutes and it was still growing…But I ate something! I’m feeling brighter today. I am pain-free - it only hurts when I move…a good morning.

The pain starts just above my heart in the afternoon. Thought it was a repeat of the embolism carry-on from before but they’ve been giving me Clexane injections to thin my blood so that’s unlikely. It soon becomes obvious that it’s the line - infected at last. The redness appears all the way along it so they give me The One that deals with that and I give in and claim my Oromorph for the pain. Very stupid not to have taken it sooner - it worked straight away and I was back to my pain-free self. Of course, now the line has to come out which means all the antibiotics will have to go through a cannula but I’m glad to see the back of it - thankfully, it did its job of getting the chemo in.

Junior doc comes in to have a look and examines my Hickman exit site. I’m being barrier-nursed which means everyone should have gloves and aprons on before they come in - helps reduce infection spread. I hadn’t really noticed that she hadn't done any of this until she started talking and I saw that she had a huge cold sore on her mouth. A Herpes infection is one to avoid so I wasn't very happy. Told the nurse, who cleansed the Hickman site and told the Sister who ‘had a word’. Doctors don’t carry germs! Fact! :)

Wednesday February 24^th

Amazingly, no temperature from Hickman infection. I’m back to normal on the Bristol Stool Chart - although there’s not much evidence as I haven’t been eating. More weetabix today - kept it going for an hour this time. Hickman’s coming out tomorrow and I could be home by the end of the week! Definitely in the mood for welcome visitors now.

Thursday February 25^th

More weetabix and milk. Tried some curry and rice at teatime - not as successful but ate some. Don’t really have any appetite so I’m not too concerned. Tried the fortifying shakes and jellies but they are way too sweet for me. Bleurgh.

Registrar takes my line out in my room. We spent a nice hour chatting and watching the Winter Olympics while she worked. ‘Pleasant’ would be overstating it but it was such a contrast to the operating theatre and staff of 6 needed to put the thing in (wrongly) in the first place. Anyway, no more dangly bits!

P’s birthday today. I gave him the choc I’d got as a present (minus the 1 square I’d tried to eat).

I am declared free of bugs but the antibiotics won’t finish til the weekend. Boo.

Friday February 26^th

I can go home tomorrow, when my drips finish! I’m to go and see my consultant on Monday just to check all’s well. The weather’s still a bit dicey so we booked our Des Res in the staff block for the weekend.

Saturday February 27^th & Sunday February 28^th

Was sick - in the bin, fortunately. Everything else OK and I can’t stand another day in this room. I’m going home. P buzzed the ward for advice - you don’t have to ring from here, haha. Sickness is to be expected for a while - keep taking the tablets. Doc doesn’t need to see me on Monday and suggests two weeks! The weekend just startedJ . We pack up and head home Sunday morning. I think P’s still worried about weather and a bit dazed by it all but it was fine. Lads had just enough time to do the special ‘Mum’s coming home’ clean which involves hovering and squirting anti-bacterial stuff on every available surface.

Made it!

Karen's Catch-Up #15 - stem cell transplant part 2

2010-03-19T19:58:26Z

This is a major step forward for my brain so i'm not going to apologise for the length. Nope. I'm not...Hope it's useful for someone.

February 12^th-14th

So got to stay at home from Friday evening to Sunday afternoon. I now hate the thought of going to hospital and see it as a major interruption to my life - I think the fact that I’ve had just one week of being home and feeling ok since xmas eve might have something to do with it. So we set off with me sulking like a four year old for the first ten minutes of the journey. Managed to get my hospital head on though by the time we got there :D

Sister did the usual bloods and we talked about the fact that I’d been told I’d “definitely” be in isolation for this stay. She said I’d be in a bay which meant other patients and their visitors (and kids as half term was coming up) and a shared bathroom. This sounds really awful written down but by this stage my head’s just full of the fear of getting an infection that might kill me. I’ve been on enough bays to know that people with colds etc still visit and there’s a lot of them in a confined space. She was very good and understood that I was clinging on to what the docs had told me and I struggled to cope with any deviation from the plan. I’m usually really easy-going but I seem to be getting so rigid in my thinking about this stuff. She’s no doubt seen it all a thousand times before. As it turned out though, a couple of men needed to be admitted which meant that the bay had to be converted to a male one. A few bed moves were needed so it was 4 hours before we got settled but it was worth it to be in my room…

Monday February 15^th

Feeling tired but generally OK and quite happy to lie in bed dozing. Visit from family in afternoon. No appetite so don’t eat anything and drink a bit (though not as much as I should).

Tuesday February 16^th

As above but feeling sick - ondansetron and metoclopramide not as effective as usual but manage to hold on to my innards. No appetite. Drink less than yesterday. Keep trying though because I don’t want to be hooked up to a fluid drip. Consultant comes in the afternoon and when I ask about the bug they’d found in Newcastle (after chemo, they’d mentioned finding ‘something’ but I was too ill to ask questions), he says it’s salmonella. Frrreak out! He asks about food poisoning etc. I haven’t eaten anything much at all for over a week and am good at washing my hands etc..(made a mental note to check for secret insurance policies taken out by the family ;D). So I’m like “Why did they take a stool sample on the day but go ahead with the chemo anyway? If you’d known the result would you have delayed transplant?” “Erm, probably, yes” he says. “Jeeezus Christ on a bike” think I (sorry for any offence), “so they’ve fried my immune system, my neutrophils are due to hit rock bottom tomorrow and there’s millions of little salmonellets running round my insides!” Am started on some antibiotics for that. Check the insurance position with P and he’s in the clear, haha.

Wednesday February 17^th

Feeling and being sick now. Am managing to keep tablets down due to my immaculate timing! Not eating at all and barely drinking. Scratchy throat and tingly tongue but nothing painful. However, diarrhea starts today. And how. Am introduced to the delights of the Bristol Stool Chart (which, I’m told, is also available on a mug. Mmmm!)

I was at number 6 if you are interested!!! A sample is dutifully provided for analysis by the kind of people who drink out of Bristol Stool Chart mugs (allegedly)…

Have decided not to worry about salmonella and just go with the flow as it were…oh and my neutrophils hit rock bottom (must be a bad joke in that sentence somewhere?)

Thursday February 18^th

Sickness, diarrhea a sore throat and something that feels like an ulcer brewing on my tongue. Have caphosol, difflam and nystatin mouthwashes to take 4 times a day each - full time job in itself. Tiredness means the credit on my dongle for internet access has been a waste so far - my laptop hasn’t seen the light of day. I can’t be ‘bothered’ to text people - it’s too much brainwork. So daytime tv comes into its own - quite happy to look at the moving wallpaper til Pete arrives. And my bum hurts.

Friday February 19^th

Stool results show C-difficile has gatecrashed the salmonella party. Both probably just opportunistic - you know the cat that is my immune system is away so it’s “Hawaay the lads! Partay!” Feel too crap to be bothered by this news - whatevah…More antibiotics for that and a drip with potassium because I’m not drinking enough. Meh!

Saturday February 20^th

Nice cream (“with applicator”) for my sore bot and codeine for the pain. Am shattered from going to the toilet so often. Can’t sit down to go so have perfected the art of doing it standing up - an unexpected new string to my bow - and, boys, there’s absolutely NO excuse for you lot missing the bowl! Now I know why they put chairs in the bathroom. I need a ten minute sit down to recover my strength afterwards. Every time I go. My drip alarm also goes off every time I come out because there’s a bit of a ‘lip’ between bath and bedrooms and I don’t always manage to lift the wheels over it.

Sunday February 21^st

Still got the vomiting, diarrhea, sore bot and the worst tiredness I’ve ever known. A shower lasting 2 minutes requires a sit down in the bathroom afterwards and then a crawl back into bed. Have to wait an hour or so before I can get up to clean my teeth. Still, tho my throat hurts, my mouth isn’t too bad despite the ulcers. Still not eating anything but managing to get tablets down. Am glad of the drip because drinking is next to impossible. So this week is all about...

However...my temperature is still normal so the bugs haven't got the upper hand yet...my line isn't playing up...and I'm 9 days post-transplant!!!

love kx

Karen's Catch-Up #14 - stem cell transplant part 1

2010-03-19T19:46:51Z

February 8^th

My dongle’s not working in this room!

Wait for bloods to come back then 9.15pm start eating 12 simpsons ice poles to try and numb mouth before Melphalan. 20 minute infusion. Half dozed off after the 7^thlolly for 10 minutes - wonder if I’ll pay for that lapse in concentration later…Then etoposide 8 x 3-hourly bags + ondansetron for anti-sickness. No sleep tonight then. 1^st two ok then they decide to get blood while they’re at it. Line very sluggish then she draws a clot out of it. She’s not happy to continue in case she pushes something into my system and calls for doc who’ll maybe prescribe urokinase to dissolve any clots in the line (takes half an hour) or we’ll have to use a cannula. Need to remind her about my next dose of ondansetron - just starting to feel a bit nauseous…Weighed to make sure I’m not retaining all the fluid I’m getting. It’s 5.30am now and I’m writing this whilst waiting to see what’s next…

February 9^th-11^th

I think they’re being overly cautious with my line - the problem’s getting blood out, not getting stuff in. The 24-hour chemo eventually finishes at 5am on Wednesday. There’s an hour delay twice because “no-one told me your bag had finished”. I hurled quite spectacularly all over my bed on Tuesday morning and that set the tone for the week. Antisickness meds aren’t working - one of them (Cyclazin?) makes me dizzy and nauseous - a winning combination. Someone’s decided it’s time I earned my keep as I feel like cr*p this week. The vomiting is a relief - I can’t stand the nausea though. Anyway enough of that - haven’t eaten or drunk all week; haven’t been weighed either and ‘my’ consultant is on holiday on Friday so won’t be doing the stem cell bit so I’m not feeling as charitable towards the nurses who come in an hour after I’ve asked for more anti sickness “Ee, I got distracted! Do you want some anti-sickness?” when they’ve been nattering in the corridor for the last ten minutes and doing God knows what before that (I know they’ll have been doing their job with other patients but…)

February 12th

Different nurse comes and gets blood out of my line first time - a good sign. We’d already decided that I would have my cells back through a cannula instead of my line just in case. The registrar who’s doing it can’t get the cannula in so phones a friend. While he’s doing that, I throw up again - quite pleased because didn’t want to be retching as my cells are going in! Another doc gets cannula in other arm and 15 minutes later it’s all done. Two little bags are in and I smell like tinned sweet corn. My taxi arrives an hour early to take me to Middlesbrough. Journey was fine and the driver chatted on enough to distract me from feeling sick. Got to familiar hospital and nurse says we’ll check your bloods and you can probably go home for the weekend! Ha ha! Smiling like Cheshire Cat! Also gave me some caphosol, johnr! The rep had left it with them that very afternoon. It’s a new mouthwash designed to reduce the effects of oral mucositis - ulcers, swellings etc which hurt a lot and can make it difficult/impossible to eat. I’m hoping it’ll help even though I had chemo 5 days ago. We’ll see…

Thanks again for messages and comments - it is much appreciated!

Love

Karen's Catch-Up #13 (now is NOT a good time to get superstitious!)

2010-02-08T08:53:02Z

Hi guys - very long (haven’t checked it so hope it makes sense!)

January 19^th

After 26 days, I was finally going home! Car was loaded before my final radiotherapy session. A ‘review’ with a doctor which lasted all of 60 seconds. “Any problems?” “No, but can you tell me if I’ll be scanned before stem cell transplant?” “No, I can’t” ”OK then. Bye”. Nurse said I might feel a bit nauseous for a couple of days and to keep using the cream. Then I was off. Spent the evening catching up with the boys and watching films in front of the xmas tree. Lovely.

January 20 - 28th

Christmas day #2. Presents and xmas dinner to look forward to. Present opening was fine. Lunchtime, I started feeling sick. Then being sick. Then diarrhea-ing. All accompanied with the worst stomach cramps I’d had since childbirth - every 5 minutes or so. Mums out there, you know those deep breathing exercises they gave you to help with labour which went right out the window at the time? Well they came flooding back (without the hissing for pethidine…)! They do actually work :D Temperature was ok. Anyway, no dinner for me - 2 years in a row now. I ended up lying on the sofa listening to them eat. Not what we’d planned. This got worse overnight til I got totally freaked because it was just red. Now in hospital, they always ask if you have any diarrhea and is there any blood like it’s a bad thing so I wasn’t happy.

Pete spent Thursday on phone ringing and waiting for calls from haematology (radiotherapy dept should help you), radiotherapy (you need to deal with haematology now) and my GP surgery. Anyway, they all rang back eventually and all agreed on the course of action. GP on call came out with some loperamide for the diarrhea, some codeine for the cramps and ondansetron for the sickness. All of which combined to gradually slow things down. All symptoms were related to the radiotherapy - why didn’t they warn me? I’d spent a month feeling fine and as soon as I get home? Whammo! Had to postpone pre-transplant meeting at Newcastle but they said it wouldn’t delay anything. So spent the week shuttling between bedroom and bathroom.

Meanwhile…

My youngest had had a bad cold with fluey symptoms during my last week in Middlesbrough but seemed to have recovered after a couple of days in bed. However, the weekend after I got home, he started up again and after checking with NHS Direct, P took him to local casualty. They said not swine flu because temperature had dropped to normal and sent him home. A couple of days later the surgery reckoned it was swine flu but too late to take Tamiflu. Fuuu*k! I’d had my 1^st vaccination jab and Pete had had his but the boys hadn’t because of the snow. He stayed in bed and we were kept apart - communicating by banging on the walls and shouting across the landing. It was like something out of a Peter Kay sketch “Can yer ‘ear me now?!?”. The other two had the pleasant job of antibacterial-ing the doorknobs and the bathroom which we had to share.

January 28^th - 29^th

He seemed to be getting better on Thursday and me and P went up to Newcastle for an overnight before our meeting with the Consultant on Friday morning. Joseph (my eldest) was working on Thursday night so Jordan would be on his own for a few hours but he was quite happy with DVDs and we had people who could sit with him if necessary. We were ringing home every hour to check his temperature and that he was breathing OK (he gets asthma) and, sure enough, at 9ish it hit 40.2 degrees. Felt sick. Rang Joseph and he left work early to go home and play nurse. Two hours later it was 38.5. At least it was coming down. Rang the out of hours doc who confirmed there was nothing more to be done. His chest seemed fine so we dozed for a few hours and at 5.30am, we were both up and wondering whether it was too early to ring home and check J . Left it til 8am and nurse Joe reported it was 37.9.

Pre-transplant meeting

We went off to the Freeman and got there at about 9.30am. After a short wait, Consultant came for us. We went through the treatment timeline to date and then we got to the consent forms. “Now, there are risks. Firstly, there is a mortality risk (puts fingers in ears “LA! LA! LA! I’m not listening!”)…about 3 in 1000 (“Shut Uuuup! Can’t you see I’m not interested?!)…which is up there with any hospital in the world “Good. Moving swiftly on…” say I. He grinned just a bit toooo long before starting on mucositis (mouth ulcers/sore throat/ not being able to eat etc), diarrhea, vomiting, blood and platelet transfusions, potentially fatal infection risk (septicaemia etc). At this point my eyes must have been on stalks (probably through lack of sleep) so he leant in and said “Don’t worry! We’ll all be watching you. Like. A. Hawk.” Wasn’t sure whether to be reassured or terrified (anyone seen Fear & Loathing in Las Vegas?) - went with the first option. To finish with, he mentioned the possibility of relapsing and /or different cancers occurring later in life because of the chemo I’d have had. “But, this really is the best option for you - we are looking to cure you.“ So I signed the form. Seven lines of risks outlined and one little line under “Intended Benefits” - To treat and cure Non-Hodgkin’s Lymphoma. Re-read that about 10 times to make it sink in. Oh and he looked like Steve Coppell (football manager). Surreal.

No time to dwell on it though because the transplant co-ordinator took over. He sent me off for a chest x-ray and an ECG first. Then back to talk about my joining their research programme as part of a control group. They are investigating ways of making donor transplants ‘better’ and wanted blood and skin samples from me. I told him he could have anything I didn’t need but he made do with a load of blood samples. He also took enough for cross-matching / blood counts / checking for diseases etc. I gave him my urine sample but no stool because I’d hardly eaten anything for over a week. He recommended swine flu jabs for me and Joseph as soon as possible. Also said it was OK for me to go to the dentist and get any work done that was necessary. A couple of teeth were starting to feel sensitive to cold drinks and I didn’t want them whipped out during treatment if possible. All done by 1pm and home at 3.30 ish. We arranged to get flu jabs at 5pm so had time to have cup of tea before Joseph drove us to surgery. They gave us a side room to sit in to avoid the waiting room which was good and we were in and out pretty quickly - Joseph was good even without the lollypop for being a brave lad. And home to bed…

January 30^th - February 5th

Totally shattered. Having a bath, getting dressed and washing up sends me crawling back to bed. Jordan finally ‘settles down’ by Thursday and is eating again. So we progress to sticking heads round doors to speak. To the dentist on Tuesday and 2 fillings replaced. More snow predicted for Thursday when my outreach nurse is due to flush my Hickman Line. I’m keen to avoid another infection so we decide to go to the hospital on the Wednesday. A wise decision.

February 6^th - 7th

Still shattered but have to make myself sort out the accounts - invoices to go out and all the rest. Today, I’ve watched Flight Of The Conchords with J & J which lifted me out of my sulk at feeling so crap for my 3 weeks off treatment and away from hospital! (I know, “Poor me!“). Definitely a bit grumpy today and didn’t need reminding that I still had to pack my bags for another month away (Sorry!). Eventually, bags were all lined up and ready to go.

February 8^th

So today’s the day. Woke up at 7am (Boo!) and “Oo! It’s been snowing! Again! Don’t the roads look lovely and white!”. Have to ring hospital to check bed situation then head south to head north because they’ve closed the road north out of the village (3 hour drive now).

As far as treatment itself goes, the protocol isn’t BEAM as I’d expected from the tales on here but EM or ME - I only get Etoposide (which I’ve had before) and the dreaded Melphalan (which I haven’t). The whole chemo bit lasts 36 hours and will start this evening. Then I get a day or two rest before they re-introduce my stem cells through a drip into my Line (hope they organise this better than I organise dinner and have remembered to defrost them!). I’m a bit concerned about the Line still because it has been known to be temperamental when it comes to blood transfusions but they assure me that any probs they’ll stick a cannula in and do it that way. Then I’m ferried down to Middlesbrough for 2/3 weeks at least whilst my blood recovers.

So there you go - told you it was long. I might try writing it as a Japanese Haiku in future - just 17 syllables allowed - I think most would be swear words though…

Thanks for the messages MacMates - I hope everyone’s doing OK. I’ve got a fair bit of catching up to do with blogs now but, off the top of my head, congrats to all with good results recently and eyes crossed for those waiting; Kezzer - give ’em hell; big thanks to Paul and his stem cell blog which I’m going to re-read (again!) - can’t believe how quickly the time seemed to pass.

I feel better now - writing this has definitely helped get my head in the right place for what’s coming so thanks again!

Keep on keeping’ on!

Love

weevils

2010-01-13T07:02:37Z

January 13th

Think I was a bit optimistic in setting my alarm for 10am…Up again at 5.30 so another 4 hours sleep. That’s not enough for me. Apparently it was enough for Margaret Thatcher which explains a lot - very tetchy…

Been here two weeks now and on my own for ten days. Pete and I have never been more than one night without seeing each other - and that only a handful of times in 20 years. Likewise, haven’t seen the boys since Xmas Day. So, yes, I’m feeling it tonight.

This is where those unwanted thoughts come buzzing round your head like flies in your kitchen or weevils in your flour - unwanted, irritating little bastards who swan in where they’re neither wanted nor needed and just crap everywhere.

There’s a cool thing in the Harry Potter books called a Pensieve. You just put your trusty wand to your temple and extract any memory from your head in the form of whispy smoke and put it in a dish of (magic) water. Then all you do is put your face in to relive this memory from the past to make sense of the present. You can also just extract them and bung them in a test tube for later:D

Alas, I’m all out of magic water and don’t have any memories whatsoever which will make any sense of a present with cancer so I use music to help get rid of my weevils. This has been my ‘secret’ song for the boys since I first heard it (though I did share it with them in a 4am email a bit back “Berk“ was the response, haha. That‘ll do for me). I sometimes think that the world is a beautiful and magical place and get really annoyed that we humans keep trying to f*ck it up - it usually coincides with some mundane thing that’s happened and kind of escalates :D Cancer ‘s just put a more urgent spin on it, Whatever, this helps clear my head a bit. And cry a bit.

http://www.youtube.com/watch?v=mrmJMoI21RY

love kx
And for any Spinal Tap fans out there - remember to turn that volume dial all the way up to number 11...

Karen's New Year Catch-Up #12

2010-01-09T08:58:16Z

New Year’s Eve - Monday 4^th January

Antibiotics finished on New Year’s Eve, I was discharged and moved straight into my new home - the staff block at the hospital. Playing it by ear, but think this’ll be my new home til radio finishes on 19^th. Too much hassle wondering whether we’ll get to treatment each day; can’t walk to my house from the car because of the snow; 2 hours a day travelling in normal weather conditions…

I ask if we’re allowed overnight visitors in our single student rooms. Yes, if they have their own room, haha. So, like a couple of kids, we sneak his bed into my room (giggling just a bit) and that was home for 4 nights. We’ve never been on holiday (apart from a few rain-sodden days in the lakes in a transit van) so this was a novelty - forgot all about cancer and appointments and Stuff :D

Saw the New Year in by finding a nice Italian restaurant down the road with just one table for 2 left; ringing kids who were at a party with their mates and quite happy; speaking to my Mum; texting others and falling asleep by 1am. All too soon it was Monday. I had my 4^th radio and a line flush at the day unit in the morning and Pete had to get home before more snow hit and he couldn’t get back. Boys liked having the house to themselves I think and had enough provisions (and enough people offering them meals!) to see them through.

Kezzerbird has given me the biggest laugh of 2010 so far with the title of her blog "2010 and no-one thumped me!" :D

Tuesday

Dropped off ok but woke really early and spent 4 hours willing myself back to sleep. Strange bed I suppose. The flat I’m in has 3 rooms and shared kitchen, living room, shower etc - way better than when I was a student! Someone else moved in during the afternoon - great! Company! However, she had an absolutely streaming cold - sneezing and coughing everywhere. I’ve spent a year trying to avoid this so, because she couldn’t be found, I moved upstairs to another room. I was sure I’d only brought one bag but the extra duvet, the contents of the fridge, wardrobe, bathroom, laptop, wine bottle with flowers in etc and only one bag to carry stuff meant about 20 trips up and down the stairs.

Wednesday

Thought I’d go to the Tesco down the road after radio to stock up on water and juice. Much further than I thought - bit annoyed with myself that my stamina seems to have dropped so low. I still set off at my normal pace which probably doesn’t help. So I suppose the walk to hospital and the walk to the shops will have to be done separately. My friends from work came to take me out for dinner - found a nice place with no-one else in (it was early). It was so nice to be catching up outside of hospital!

Thursday

Snowing again - I haven’t seen it in town for ages - under streetlights and so on. Lovely! Had a good meeting with Macmillan adviser at the hospital who thinks I could get a grant to help with accommodation costs - major headache out of the way if that happens. We’ll see. She knew that the gig the boys played before xmas had raised over £2,500 because she'd helped distribute the posters (I didn't know that) - an amzing amount, so well done to all involved. Also wandered round to the holistic centre and found out I could have a few ‘sessions’ whilst I’m here. 2 reiki massage sessions booked and she rang with a reflexology cancellation for tomorrow. I’ve never had anything like this before - I’m really looking forward to it. More snow. Found out the boys had waded up to work at the pub - thigh deep in places - only to find the place shut. No-one had remembered to tell them. Dolts. Boss is very sorry and still paying them but…

Friday

Day 8 of radio already. Can’t believe I’m over halfway. So far, no side effects other than tiredness (which could be due to my waking up so early?). Had line flushed again. No news on blood cultures which we think means they haven’t found anything and infection has cleared up. Asked about the possibility of getting second swine flu jab up here but not possible - my GP will do it as soon as I can get there though. Reflexology session was so relaxing. Had lunch with friend from school at WRVS café in the hospital - didn’t even know it existed…I’m missing everyone at home. Don’t think anyone’ll be able to get through this weekend (and they shouldn’t try) but haven’t seen the boys since Xmas Day. Facebook and phones aren’t quite the same…Saying that, their ‘term’ has restarted with coursework to do. As is traditional, they’ve done no work over the holidays and have a deadline this weekend. So they wanted me to look at their work with a teacherly eye before they sent it. It arrived at about 9.30pm when my brain has all but shut down for nightJ . Anyway they sent it off and they and Pete were heading ‘next door’ to celebrate their friend’s birthday. His planned meal / party had been cancelled because of the weather so his Dad had lured my lot over with promises of New Home Brew - I don’t expect much face book action before about 3pm today…remember to look in on your neighbours during The Big Freeze, eh J .

Karen's Boxing Day Blether #11

2009-12-30T08:43:51Z

Boxing Day

As well as broad-spectrum Tazocin, I’ve been on Teicoplanin (twice a day to start, then once a day) to target coagulase-negative staphylococcus. Big name for a little bug but it does kind of roll off the tongue once you’ve worked out how to say it. It's not too bad now that I know I'm staying til Tuesday at least. I can get my mind in gear for that and buy my mobile broadband time and TV etc now! They just don't realise, these life-saving nurses, the momentous decisions that hang on their every word, haha!

I just haven't felt hungry though I've just had some soup for dinner. Pete and the boys are having a nice xmas dinner tonight - roast beef - so I won’t see them today. We'll have ’our’ dinner whenever I get out of here. Just been nattering to sons on facebook chat. I've been acting as fashion police as they trawl the net sales with their xmas money. We mostly agree - must be doing OK, haha - I would NEVER have let my Mum anywhere near my wardrobe :D

Spoke to my brother who’s stuck up Aberdeen way. He’s missing his traditional Boxing day p***-up with his old school friends from Wales. I’m sure he’ll find someone up there to celebrate with…Also spoke to Mum, who was having a nice, quiet one - a bit disappointed that bro couldn’t get down this year.

Haven’t told friends I’m in yet with it being family time an’all so Billy No-Mates today. I do have TV though now and, after some rearranging of furniture and moving my laptop around the room, can pick up broadband. Hurrah!

Sunday/Monday

TV, internet, antibiotics and visits from Pete which always begin with an assessment of the latest weather forecasts and how my radiotherapy could be affected. I can’t do with the stress of getting up each day wondering whether we’ll be able to get there. The silver lining in the infection cloud is that I’ll be here for the start of radio treatment tomorrow.

Heard that SK had died in the ICU on Xmas Day. She was a lovely, warm-hearted lady who had been on the ward almost every time I had. She’d been in hospital almost continuously since March - they’d let her out and she’d last a day before having to be re-admitted with a temperature. She was usually cheerful in the face of no-one knowing exactly what was wrong (apart from her cancer). Sometimes it was all too much and she would have a little weep with us. She brought me a piece of her birthday cake when she heard I was in isolation for the first time. Anyway, I’m glad she’s not hurting any more.

Tuesday

Nurse rang radio to let them know I was an in-patient. They usually leave in-patients til last but they said they’d send someone up in half an hour and to take my anti-sickness tablet. Just time for a quick shower and the porter was here. Radiology seemed miles away even in a wheelchair. By the time we got there, my ears were freezing! Must remember my hat tomorrow J . Had a quick chat with my ‘named nurse’ about skin care (no perfumes/talc etc just baby or ’Simple’ soap) and appointments, then into the room. Spent some time lining me up and drawing more lines, then treatment began. Not at all painful and only took about 5 minutes. They said that subsequent appointments should be quicker. Got a big tub of aqueous cream to rub into the affected area twice a day. Have to rub into front and back.

My Consultant appeared late morning full of commiserations at the timing of recent events. He said he’d let me out on Thursday if I came back on Saturday for more antibiotics. We don’t know what the weather’s going to be like (my car is still parked miles from the house and it’s snowing today). Anyway, we decided I’d go home on Thursday after radiotherapy and a double dose of antibiotics to see me over the weekend. I’d responded well to treatment this week and my temperature was stable so he didn’t foresee a problem with that. There’s no radio on New Year’s Day, so I’ll be off til Monday. We talked a little about next week and logistics if there’s more snow and so on. If it comes to it, I’ll have to be admitted . It’s obvious that that’s not ideal from anyone’s point of view because I’m not actually ’ill’.

We talked about the line infection - he mentioned getting in touch with radiology about inserting a wire to do something but he was half-talking to his junior so I don’t quite know what that’s about yet. I was concerned about infection in the second lumen. It can’t be used so, therefore, isn’t flushed. He said we leave well alone. It may be that the whole thing has to be replaced prior to stem-cell transplant but we don’t know that yet. He doesn’t share my concern about fresh stitches/wounds as potential sources of infection and is hoping we can clear up this infection and just keep using the line I‘ve got. He’d asked us to remind him after xmas about getting in touch with the hospital in Newcastle for a transplant date. I finish radio on 19^th January so we can fix a date now. Pete rang them in case they’d sent a letter already - we’ve had no post for a while. Anyway, that’s all in motion…

Friends from school had been in touch and turned up this afternoon bearing gifts. They’ve also offered me a bed next week if I decide that staying here is the best thing to do - that’s great because we were struggling to work out how to cover a week’s stay in a hotel. They’re back at school so I won’t feel like I’m imposing as much. Radio will send a taxi to pick me up and drop me off. Hopefully none of this will be necessary but it’s reassuring to have a back-up plan just in case.

I decided to put another coin in the very expensive TV - is it me or has Xmas TV gone down the pan??? Where are the Big Films? Loads of repeats and grim storylines. Very festive. Maybe there’ll be something good on today…

Love kx

Karen's Christmas Catch-Up # 10

2009-12-26T07:24:38Z

Well the snow made everything look lovely but - like many other people - totally messed up our plans! We were snowed in til xmas eve. We’d had no post and, therefore, no presents delivered for a week. Radiotherapy delayed after lots of to-ing and fro-ing and pacing up and down when we got a message saying “Don’t worry! There’s a six week window from the end of your last chemo.” We’re already in week 7. Then we got another message saying “Don’t worry! A delay won’t affect your type of cancer”. The other concern was that it had been, yet again, over a week since my line was flushed. I made appointments for xmas eve and a neighbour offered to take us round to our car which was parked up the hill at the pub so that we could get it out. It’s a 20 minute walk up a very steep hill or a 15 minute drive round the road. 30 minutes if you have to do it twice because you’ve forgotten the car keys :D Thanks to the kitchen staff who all came out to push us off the car park!

The main roads were ok and we got to hospital in time. Had a short wait in radiotherapy then went in for final planning session. They lined up all the dots and re-scanned me. I asked for anti-sickness (ondansetron) prescription so that I’d have it ready for next Tuesday. Doc appeared just at that moment and wrote the prescription. Excellent, we wouldn’t have to wait for ages while that was sorted. Went round to haematology day unit to get my line flushed. Blood was sluggish but got there in the end. I was last in so everyone got a flyer which was nice for them.

A last run round the supermarket and then to find some new tree lights at 5pm - one box left and sales assistant gave them to us for half price! We hadn’t been able to get out for our usual ‘real’ tree so Pete found an artificial one reduced in Sainsbury’s. We set off home congratulating ourselves on having pulled it all together - apart from wrapping stuff… We’d planned to drive to a friend’s house a mile of home and walk the rest of the way. Between all of us we could carry the food home - the boys were going there for a drink after work so they could bring some of it home. But it was freezing cold, damp, foggy and dark so we decided that me walking home wasn’t the best idea. Another good neighbour drove us the 5 minutes to home.

The fire was roaring and the boys had decorated the living room while we were out so it was starting to look really festive. We’d collected a load of parcels that had been left with a few people down the dale - so we had some presents! A quick dinner , then we’d start. Then the shivers started - not teeth chattering but ‘inside’ if anyone knows what I mean. I was really thirsty but not at all hungry. A had a dull headache coming on too. I was wearing about 6 layers but still needed to wrap myself up in a duvet. Took temperature - 38.5 Then that sinking feeling when you know you’re going to have to go in to hospital (however great the staff are). Took off the duvet and a few other layers and retook temperature 30 minutes later - 38.4. OK, ring the hospital, get the bag ready because you might be on antibiotics for a week. Ring the boys at work to let them know what’s going on. Ring friend to come in Land Rover and take us to our car. He apologised for not being able to take us to hospital because he’d already drunk a bottle of wine.

Got to ward at 10.30pm and waited in a side room. Our thermometer showed 38+ all the way there. Obs taken and bloods / cultures taken from line - temperature 36.2. What?!? Well at least they'll send me on my way then! Consultant on call had other ideas and recommended Tazocin and Gentomicin straight away on the assumption that the line was infected. Had to wait til midnight for a doctor to come and take peripheral blood sample and go through symptoms etc. No beds on Haematology so waited for Oncology. Got it at 4am. Started antibiotics straight away. They’re only ‘short’ bags so had about an hour’s sleep before early morning obs - temp 38.5. Breakfast trolley came at 7.45ish and so on…Totally knackered and not at all xmassy , haha. Couldn’t face food so passed up on the turkey dinner (with wine!) and the ‘festive pie’ at tea-time. Got a present from the staff which was a nice touch. Not sure about the xmas cracker to pull by myself, haha.

Doctor on call was a turn. Took 5 goes to get my blood “Dear Gott in heaven! Vere are your veins voman!” (he was German) and “Do you read books (“Sharp scratch”) ? Have you read Goethe? (“sharp scratch”) I love Tolstoy! (“sharp scratch”) I vill not be beaten. Don’t vorry! I am not a learner (“sharp scratch”)” and so on. We’d been told a haematology doctor would come and see me this morning; that I’d go for a chest x-ray and that I’d be having more antibiotics. None of it happened. I ended up getting Pete to ring knowing we’d get some kind of answer that way - just wanted to know roughly how long I’d be in for… Haematology Doc had been on the ward but didn’t know I was there. They chased up the x-ray. I got more antibiotics. We ‘cleared the air’ at teatime and we’re all friends again now J . Pete, Joseph and Jordan came to visit bearing gifts which raised my spirits. Not the Xmas we’d planned. Labs rang. Blood cultures showed an infection so now they do more tests to try and pinpoint it and decide which antibiotics to use. Looks like I’m here for a while. Ho ! Ho! *$!%ing Ho!

A short interlude...

2009-12-17T12:00:31Z

Hi All,

Been off for a few days because, well, been too grumpy. I've been very lucky this year in that my little family have coped really well with the Monty Python jackboot from the sky that landed on us last Xmas. My mood has been on a pretty even keel all year (after the initial shock and a nervy day or two before scan results) but generally we've just got on with things.

I've coped with working full-time doing a job I loved to not working at all - overnight. I've got used to not seeing people as much in case of infection. I've got out of doing the supermarket run (Yay!). In a way, I've enjoyed an enforced rest as I was probably doing way too much before in that as well as working, I was home-educating our two sons and helping to run our music co. - at least I get all the sleep I need know and am not burning the candle at both ends. We coped with the financial meltdown resulting from my not bringing in the regular bacon. The words blood and stone come to mind. As well as 'looking after' me (usually a model patient but I have my moments;), Pete has had to deal with his mother who lives alone some distance away from us.

She hadn't been eating properly when she was on her own and lost some weight - (the family organised shopping and would cook for her and so on). So, community matron and all of the support services became involved. Great, we'd tried all of this before (cooking meals etc) but she thought they were an intrusion last time so it stopped. She's very independent-minded, haha. Anyway, we managed to persuade her to spend a few weeks in a respite home where she would be fed and monitored (the alternative was hospital which swayed her) and Pete and his sis would make the house more comfortable. She refuses to let them throw anything out if she's there,lol. A care package was put in place and after a few hiccups - mainly due to officious social service staff who, at the outset, had decided she would be going into a home and would talk about her as though she wasn't in the room - she seems happy to 'let' people in to make her meals. For Pete, this had dragged on for months. But she is happy and in her own home and we are happy that she is eating properly in her own home:)

The boys have continued to gig, do their courses and work at the local pub. Joseph passed his driving test in the Summer so a whole new world of socialising opened up for them:) Unfortunately, Karate seems to have fallen by the wayside (both England standard) - sometimes due to treatment Pete couldn't get from Middlesbrough to home to York in time. Sometimes due to gigs. Sometimes because they had coursework deadlines to meet. Now, because of the cost. I think that they should continue to do it - it's great for self-discipline and friendship. They still play football - this year for the village team. Since Joseph got a car, they've stopped walking up the hill to work. That might change as he's just realising the cost of running a car!!

The main thing is we're still laughing and Living Our Lives. And I feel quietly chuffed for all of us.

My Mum has been up from Wales a few times this year - always in time to clean the ccoker, lol. It's always lovely to see her even though before, we didn't see each other as much what with work and so on. Sometimes I just need my Mum. I'm in touch with my Dad again - kind of:) My brother sent me a birthday card this year, haha. The lengthy phone calls we've had have obviously worked :D.

Three lovely ladies from school have regularly visited me in hospital - even on a sunday - and we've just gossiped about school, life and well normal stuff really. Lots of laughs - we've had to take ourselves off the ward from time to time so as not to disturb people. Their visits always leave me feeling happy and hopeful and I am very grateful to them for taking the time. You're all lovely, haha. I've had support and good wishes from a few special people locally. They've kept in touch with offers of meals and hats and just to say Hello.

What Now (and now the Macmillan site) was a godsend when I went back in the summer knowing that I was in for the long haul treatment-wise. I have met some fantastic, funny, wise and knowledgeable people there who continue to inspire and fill me with hope for the future - whatever it throws at us. You're all lovely too:D!

Sadly, I seem to have lost a few friends who, I guess, just couldn't cope with the news or didn't really care enough to try which was really saddening for a while. I tried. I rang. I sounded normal. I told them that I looked OK :D but soon let it go...A major source of my grumpiness was one of these ringing out of the blue a few days ago. "Great!" I thought. Why don't you come for a drink on 21st? "Sorry, I can't, radiotherapy starts and I've got a flu jab in the afternoon" "Well, we can't do any other day. Can't you change your appointments?" "erm, no". And that was that. I was really pissed off at the crassness.Like she was doing me a favour inviting me at all! Then the next day I was in a bad mood (for me) because she'd put me in a bad mood the day before. Why should your stupidity ruin a perfectly nice day with my family? Why did I let it? You get the picture...

Anyway, we have a light dusting of snow and glorious sunshine outside and I feel normal again today. Looking forward to starting radiotherapy on Monday. Had my line checked on Tuesday and it flushed and bled fine.This has been taxing my faculties for a while - take this one out and get a new one that works properly or put a new one in just before stem cell transplant. A kind of Hickman Hokey-Cokey. Nuking my immune system with fresh wounds and stitches on both sides of my chest doesn't fill me with confidence so hopefully the one I've got will do this last little round of chemo...

Needed to get all that off my chest today.

I love Christmas and am ususally well into it by now - the festive season starts today! I hope you and yours have a lovely time and that next year takes care of itself in the best possible way!

Love and good things to you all

Karenxx

Karen's Catch-Up #9

2009-12-13T08:52:19Z

Friday 11th December

Rang the day unit and, sure enough, had to go in. The third day in a row. I know we're lucky to be able to just go in and get treated but I really didn't want another 4/5 hour day at hospital. My mood has been 'simmering' for a couple of days and totally slumped on the way over because I'd had to miss a couple of rare nights out recently because of colds - either mine or other people's. I'm really tired of doing everything I can to minimise risk only to be foiled again :( God I sound pathetic.

Anyway, luckily one of my regular docs was in and she could feel the knobbly bits round the line and see the redness etc. She was absolutely sure it wasn't an infection so that lifted my mood a bit. She sent me round for a chest x-ray which only took 10 minutes - it's usually heaving round there. Got back and she showed my the image - there's a kink in the line - that explains the knobbly bit and also the sluggish blood flow from it. Other than that, everything seemed to be in the right place. She compared with the last chest x-ray in September which showed that it had a kink in it then. I'm just glad they got the chemo through it. She thought that they would probably keep it in for now and change it before the stem cell transplant.

My consultant wandered in then. He was concerned that the line had been so sluggish when they took blood from it a couple of days ago - the first sample was a bit 'clotty'. He'd already booked a slot to have it taken out on Tuesday if they were still finding it difficult to use. I won't need it for radiotherapy. So it makes sense to take it out although my confidence in the team that does it has been dented. They'll also get to fit number 3 next month. I'm wondering if it's possible to have someone watching over their shoulders whilst they do it??

So came home happy that it wasn't an infection. Still fed up though and the only thing for me to do is take myself off and listen to music. so I did.

Saturday 12th December

Inspired by Drew's blog to go out for a walk. Couldn't find an ipod but discovered that the radio on my phone works so set off til it got too boggy (over the top of my boots boggy). It's a good walk through woods and fields and, rarely for round here, it's quite flat. I was really enjoying myself til I noticed the blister - good job I'd turned back when I did. Have a lovely blister on my heel so foiled again. Gaaa! well more like "FFS!!!!". Had a good discussion round the dinner table about the role of TV in the Decline of Civilisation (or something). Discuss. After a while though I just wanted to argue for the hell of it.So the only thing for me to do was take myself off and listen to music. so I am.

I really need to let off some steam somehow or my head is going to explode! So, do I ignore the doctors and drink loads and go out with mates to crowded places regardless? Course not, because it's just not possible for me to do something to jeaopardise all the treatment they're throwing my way. I have to do everything I can, to stay with my boys for as long as I can. I don't feel like crying so that's out. I just need somewhere to direct my 'anger' and general hacked-offness. Usually, an empty house and the amp turned all the way up to 11 does it but that's not going to happen for a few days yet. I'll just have to rant on here. I'll probably read this tomorrow and wish i could blame it on the booze, haha. Anyone else get this? What do you do when the demons land?

nite all xx

Karen's Catch-Up #8

2009-12-11T20:11:34Z

Thursday

Off to the Radiotherapy department for The Planning Session. Airy waiting area and WRVS come round with tea! Excellent. But there was a TV on in the corner, which no-one was really watching, with a load of squawking bints arguing at full volume on some godawful sitcom. No need for that I thought selfishly. It might be a nice, genuine distraction for people waiting for treatment, I know that. But give me a radio every time!

After a half hour wait, went through. It wasn’t as hi-tech as the booklet said, haha. There’s a lot of building work going on there at the minute. For you fashionistas out there, forget the lederhosen - hard hats and baby blue overshoes are,like,so now! More entertaining than the telly anyway. I was to have a CT scan which meant a cannula (why can’t they be trained to use the Hickman Line??) but she took one look at my invisible veins and bottled it decided that in her professional opinion, she felt we could do the scan without the contrast dye. Hmm. So the kid in me demands to know “Why?”. “Well we’re very hi-tech here so we can merge this scan with the last one you had in November!” “Yeah, so why do we have to have contrast dye at all then if you could do that all along?” “Yeah but why were you going to give me a cannula when you knew about the hi-tech bit?” I didn’t push it with the last one because she was about to tattoo me and, therefore, held all the cards.

So had a scan without dye then she brought out her big felt pen. I had a dot about 3” above my belly button, 3 across my pelvis and one on the outside of each thigh. Then she went round them all with a needle and just pricked them. So no pain and really quick. Design-wise, I asked for something funky and festive (she tried to look like she hadn’t heard similar a thousand times before. Which was very nice of her). I got ‘black splodge’ which, I suppose, could look like snowflakes if you squinted at them. And you were pissed. Then I was out of the door before I could ask any more questions “They’ll explain everything at your first session. Bye!”. Think she was running late :) Then home to my roaring fire - first time in a week!!! So curled up and caught up with some phone-calls. Been invited to a friend’s for an early xmas dinner “cos we want to spoil you” Sniff.

My line feels weird tonight. Not at the site where the lumens come out but in my neck where they put it in. It’s knobbly and a bit tender and red and when I move, yawn or swallow feels like it’s tugging. Please don’t let it be an infection. I’ve got plans for this week and IV antibiotics in hospital doesn’t come anywhere near…