Thursday, November 26, 2009

Fuzzy head

I need to record what has been happening this week, otherwise I will forget...

Friday 20th (day 1) - chemo delivered
Saturday - shopping and pub
Sunday - visited C & MJ
Monday - MUGA scan, afternoon sleep and headache (as already reported)

Tuesday - work as normal although did snooze in the car on way home from work (G driving, obviously). Didn't feel too tired or fuzzy during the day, just annoying myself with this non-stop cough and getting headaches in the afternoon.

Wednesday - slept well last night, discovered cocodamol tablets which are helping with headaches and act as a cough suppressant, so although the cough is still there, it feels a bit better managed. Was fine all day, but got tired at about 3.30pm. Snoozed in car on way home from work, had a couple of hours nap when I got home.

Thursday (day 7) - didn't sleep so well, cough seems a little better, feel 85%: in other words, I'm not quite firing on all cylinders and am happy to pootle along, but don't ask for any tricky decisions as it may take me a while to get my head into gear. Feel a bit fuzzy-headed. If I wasn't at work, I would be wasting my day, so work is a good focus and I can do the things I need to... but not much more! No emergencies please!

Friday - got a days holiday to take. Desperately need to hoover the house and clean bathrooms, so that will be my target for the day. Otherwise, I'll only waste the day watching TV and internet surfing. Achieving something (even if it is only cleaning!) will make me feel a more worthwhile member of society (well, of the household, anyway!).

Friday - felt like I was back online and awake, finally. Slept OK - woke at 6am, awake for 45 mins or so and then back to sleep. Woke properly when G went to work, but decided to stay in bed until 11am, just because I could. Walked into town, cleaned bathrooms, hoovered house, sorted bins, cooked lamb shanks. Cough still annoying, cocodamol still working. 10.30pm now, tired and think I'll sleep well. Period started, only 16 days since the start of my last one, but am not surprised that my cycles are a little buggered!

Sunday - had a lovely weekend with Matthew, Claire and the kids, and mum and dad. Feel like my energy is coming back in spades! Still coughing, but feeling good in myself. I would go for a run tomorrow if my cough wasn't there. Drank lots of cheap prosecco with Claire and had a good catch up. Tonight, G has shaved off the rest of my hair so I am properly bald now. I'll post a picture tomorrow, when I have some make up on!!

Monday - G had the day off work - bad cough, headaches, aches and pains in his body, high temp. I left him to it! He did look bad though...

Monday, November 23, 2009

MUGA Heart scan

Had my scan this morning at the Velindre Cancer Clinic in Cardiff. It took a while - you get an injection on arrival (which the nurse/technician nearly managed to mess up - she missed the vein, but luckily didn't go right through it so could try again and found it 2nd time!!) and then a wait for a while, then back for the 2nd injection (this one is radioactive, but only a tiny dose - and she nearly messed up again - I have two tiny bruises on my arm now!) and straight into the room with the scanner. They attached 3 wires to an ECG machine, position the camera over the heart, and then I lay back and dozed for about an hour!!! I was definitely falling asleep... twitched a couple of times and woke myself up!!! lol The scan shows how much blood is pumping through the left ventricle (should be 50-80%, I think).

I won't get the results today as they have to tidy up the images, get a proper radiologist to review and report on it, and then they send that report to my consultant, so I guess I will find out when I next see him on 8th December.

After that, I was really tired - only got about 5 hours sleep last night and the night before, plus all the driving to and from Cardiff in fairly heavy rain and wind - so came home, sent a couple of emails and went to bed. Slept for 1.5-2 hours, so not massively long, but it all helps. I've also had a headache all afternoon & evening, which two Hedex dented slightly, but didn't fix like they normally do.

However, this time around I have had no: mouth ulcers, constipation, shakes, no sickness, no change in taste, so I still consider myself very lucky. It is entirely possible the headache is more due to the Zoladex injection than anything else.

I won't be having any more steroids now (I've had half the recommended dose for only 3 days, instead of what I had last time - the full dose for just under 5 days), so I am hoping this will help my sleeping patterns, which seem to have me tired but not sleepy and staying awake until 1-2am, waking at 6am.

Greg and I may shave my head properly tomorrow, if we are both not feeling to tired to do it!! I think it'll look better with no hair than the patchy/wispy bits that are now left. It may itch less too.... lets hope!!

Sunday, November 22, 2009

FEC #2

Well, had my 2nd dose of FEC chemo on Friday 20th. After having a good reaction to it last time I drove myself there and back again, which was fine. "My" medical student, Sophie, was with me during this one, to gather more research on my experience for her project/report so by chatting to her and the nurses throughout, it went very quickly! Appt was at 9.30am and I was heading out by 11am. Went via Waitrose afterwards to treat myself to something nice for lunch!!

Spent the afternoon cleaning the kitchen, cooking a beef stew, and upgrading my laptop to Windows 7 as the discs had arrived.

Side effects from the chemo so far this time:
-My vein aches a little bit, but that is clearing a little bit each day;
-Felt a tiny bit nauseous on Friday evening, which passed when I ate;
-I had a small dose of lactulose on Saturday and that has kept things moving (with a nice bit of extra wind, lovely!!)
-I have a cold which came on late Saturday night - my tickly cough from last week has turned into a snotty nose. As immunity is usually suppressed 7-10 days after a dose, I think this is just a usual winter cold. I have checked my temperature (pre-paracetamol, as that lowers your temp) and I am normal, so I'm not worried - just annoyed!!

It may not have helped that I spent yesterday afternoon in the pub with drunken boys (well, to be fair it was only Luke that was properly drunk (he's become a lightweight since he lost 3 stone in prep to go in the Army!!! ha ha) and he is a very friendly and happy drunk, and shopping for hats!! Some people on chemo really avoid going out during their treatment, but I couldn't bear to spend months inside so I want to carry on as normally as possible.

I bought this hat: Tweed Bakerboy and I wore a nice grey beanie hat with a flower on that Claire bought for me (thanks Claire!) all day. If I could wear hats inside all day, I might do that instead of wigs, but they're a bit warm and it looks a bit odd....

I can't decide what to do with my head - almost too many choices, none of which is right!!! I washed it yesterday and rubbed half of the hair that is left out, so it is much more patchy than the earlier picture now. I wonder if it would be better completely bald? It'll probably be there in another day or two. Hats are more comfy and most people seem to prefer me in those, and the wig feels too big (as in 'big hair' not 'it doesn't fit') for me. Maybe I shouldn't have got one with a long style... I'm just not used to it. It also comes down further over my face than I really like so I want to keep hooking it behind my ears, which I can just about do, but it makes you feel a bit self conscious about the edges showing!!! Oh well, I shall work it out...

I am also getting slightly horrified at my weight gain. I have to confess I ate a fair old bit just after my first chemo dose (they say its the steroids that increase your appetite) but it had a delayed effect and the weight only showed up last week! I have since eaten fairly normally, but the weight is still piling on! It feels silly to go on a diet at this point (plus, I am back on the steroids, but a much lower dose - I am going to only have half the recommended daily dose and for only 3 days, not 5 as last time they made me shaky and I don't seem to have the sickness that many people get and they are designed to protect you from) but I am now starting to feel pretty unattractive and don't want to make the weight loss harder than it has to be at the end of all this. So, more fruit and veg to fill me up and I must stay away from the chocolate and too many carbs!!! If I didn't have a cold, I'd go on the treadmill for a bit, but exercise and a cold do not mix!

Tomorrow brings a 'MUGA scan' (heart scan) which takes a baseline of your heart function pre-Herceptin, which may or may not cause heart complications, so I shall not be back at work properly until tuesday, which gives some time for my cold to pass a little!

Have a lovely sunday all xxx

Thursday, November 19, 2009

A short hair day

Here is the evidence, today I had a 'grade 3' hair cut!

Without wig:

With wig:

Tuesday, November 17, 2009

"Strong" bloods

Just a short update to say that my pre-chemo clinic went well today. My bloods have come back as "strong" (which I guess means I have a high white cell blood count), which seeing as I feel fine isn't too surprising.

Finally met the proper oncologist instead of his locum and registrar. I don't think he had fully read up on me before I arrived, as he looked surprised by my bloods, and even more so by my pathology report (when he saw how many lymph nodes were involved, he asked about the family history... any sisters, aunts, female cousins? Nope, none on mum's side). He said that next time we would go through my treatment in more detail. I think he wants to check that what has been prescribed is what he would recommend. He was on a trip (not sure if holiday or conference or what) on the previous times I've been there. He asked about side effects from the last FEC and I mentioned the constipation and mouth ulcers, and even though they weren't too bad, he has prescribed lactulose and Difflam oral rinse, as well as antibiotics which I think is to ensure the tickly cough I have doesn't turn into anything more serious. He was a bit distracted by computer problems, so it was a little bit chaotic. The online system they use to order the chemo, which they usually do at the time they see each patient, was offline, so there was a bit of a backlog of online prescriptions to do and he was getting very frustrated!!

He also prescribed my latest dose of the ovary suppression drugs. I had mentioned this last time I was there, but probably didn't make it clear that it was due today... oops. My fault - I had meant to phone ahead of today and remind them so they could get prepared, and time ran away from me... Anyway, he wondered why I was on gonapeptyl depot instead of the more well known Zoladex and phoned the fertility clinic in Cardiff to ask. Not sure what they said, but he did try and get the gonapeptyl but the Nevill Hall pharmacy doesn't stock it, so he gave me Zoladex instead. I hope changing doesn't cause a problem. They are different drugs, but do the same job from what I have read, so fingers crossed.... He did say that the FEC-T treatment isn't the harshest from a fertility point of view, so that is also good news. Still, would rather try the ovary suppression just in case!

So all set for Friday. Got an all day planning meeting at a hotel tomorrow, then a normal day at work (plus getting my filling fixed again!!) so plenty to keep me busy!!

P.S. hair still coming out. I can pull it out without pain, but it isn't leaving clumps on my pillow in the morning and I don't have any bald patches yet, so I am keeping it for now!!!

P.P.S. not on steroids now, but keep staying up late. Nearly the same hours as G now! Weird. I'm normally asleep by 11pm...

Sunday, November 15, 2009

Hair loss has begun....

Had a lovely weekend with G's friends in Cheshire/Liverpool. We started by driving around Wales on Friday, just to find some new roads and places and have a nose about. We aimed for Aberaeron after criss-crossing the Brecons after I saw a short video on the Welsh tourist board's website showing that it was a pretty fishing village. Indeed it was, and if we had more time and it wasn't peeing down with rain, we might have stopped and had a proper look around!!! As it was, we were then a bit late getting to D&L's but we got there before 7pm and they'd cooked a lovely butternut squash risotto for us.

A few glasses of wine ensued, and we got to bed about 1am I think! Not bad considering D had been on a night shift the night before and only had a few hours nap that day.

Next day was a bit of shopping at Cheshire Oaks and a nice curry in Liverpool, and then today we had sunday lunch and came home. Back now, just in time for an evening with the Doctor (Who) and Top Gear. Sorted.

However, over the last few days my hair had only been coming out in single strands, which is more or less normal. I've probably only noticed it as I am avidly waiting to see when it'll start to come out quicker and I'm still getting used to having long hair so I do notice it more anyway. Today, though, and I woke up to be able to pull 5 or 6 hairs out at once each time I just run my fingers gently through. Definitely more than is normal, so I think I will count today (day 17 after my first chemo) as the day it really started. I don't know how quickly it will come now, but I am not going to be pulling it out on purpose - I'll be gentle in the hope it will get me through to at least Thursday, as that would be the best day for getting it sorted out - if I have to this week.

I spoke to my usual hairdresser last week and she said that I am to call anytime I need her and she will fit me in. She's happy to shave it off for me and to fit my wig properly and style/trim it if needed. Bless her, she's a really sweet girl and most of all, an exellent hairdresser, so I know I will be in safe hands. I think I will probably find it a more emotional experience than I am expecting, but once I am past it, it will be fine. At the moment I have what a lot of the ladies on the BC forum I chat on are calling "pony tail ache": the ache in your scalp when you've had your hair up in a tight pony tail for too long. It hasn't been in one, but the feeling is the same!

This week, I am back to hospital for pre-chemo blood test on Tuesday, and then 2nd chemo treatment on Friday. I have a slight tickly cough, but can't honestly say I wouldn't have got that at this time of year anyway, so I don't think it is unusual or caused by lowered immunity or anything. Lets hope this next week all goes smoothly. xxx

Monday, November 9, 2009

I didn't expect to be running...

Yes, I admit it, I thought I would go for a run today. Glad I bought that treadmill now!

I know it isn't what you would usually expect someone on week 2 of chemo treatment to do, but I am feeling 100% fit, so I thought I would see how I did. I did a mix of running and walking for the first 20 minutes, and managed 1.5 miles, had a little break and a drink, and then got back on for another 12 minutes and managed to run constantly for another mile. I was rather pleased with that!

Back to work again today, and was joking with the team that I am a big fraud and i'm not really ill or having treatment at all!!! It is certainly how I feel today.

This week is supposed to be lower immunity, so I will keep an eye out for germs and bugs, but I certainly don't feel in any danger, and if I was allowed to have another treatment and get them done quicker, I would do!!

Had a lovely weekend - saturday was sorting out presents for a certain boyfriend's birthday this wednesday, and doing a bit of shopping at our new favourite garden centre/cafe in Raglan. Then Matthew brought the children down for a visit on Sunday, which was really lovely. Sadly, Claire's lovely Nanna was at the end of her cancer journey so Claire stayed at home. Gloria passed away today. RIP to a lovely, characterful lady. She will be missed.

And finally, I have a confession: I had friday off work, pootled about in the morning and was quite content. Decided to pop to the new Cabot Circus shopping centre in Bristol to have a look about so took myself off.... only to completely misjudge the entrance to the car park and mangle the rear passenger side of the car. The panels can be resprayed, but I've managed to bend the metal on a plastic bollard, so that'll be trickier to fix. Feel stupid as it is years since I have damaged a car in that way, but I suppose it is more likely to happen with a much bigger car and in the first few weeks of ownership.... Doh!! Totally shook me up at the time and ruined my shopping trip. I bought nothing and won't be going back. I'll get over the embarrasment eventually, I suppose...

Monday, November 2, 2009

FEC 1, Day by Day

For my own records...

Day 1 of chemo (Friday) - slept a little in the afternoon, funny tasting mouth, ate too much even though I wasn't hungry. Interrupted sleep - went to bed when tired, but didn't really fall to sleep for a while (until G came up, which is often between 1-2am on a weekend).

Day 2 (Saturday) - awake at 6.30am (possibly excitement of impending laptop delivery). Cleaned 3 bathrooms, did two loads of washing, hoovered & dusted house, changed bed clothes. Went out for 1 (non-alcoholic) drink with the boys. Stayed up until 1.20am to fetch G from Ross, stayed up chatting with G until about 3am. Slept well.

Day 3 (Sunday) - awake at 8.30am and aware I needed breakfast and next dose of steroids so had brekkie in bed while net surfing on lovely new laptop. Got restless, so got up and cleaned kitchen, moved all downstairs furniture on hard floor, hoovered it and mopped it. Desperately needed doing! 2 more loads of washing including clean bedding from day before that cat (bloody Hobbes!) had sprayed. Walked into town at 3.30pm to get a few veg to have with dinner, which G cooked (having finally recovered from his hangover). Roast chicken - couldn't quite finish it. Had forgotten to start milder anti-sickness tablets in the morning, so started with an evening dose. Was a bit more tired towards the end of the day, went to bed at 10pm and more-or-less slept through until alarms at 6am.

Day 4 (Monday) - woke at 6, stared at ceiling and cuddled cats until 6.30am then got up to get brekkie to give something in my stomach for steroids to land on. Smoothie with linseeds (to try and get things moving down below) and grapefruit. Got showered, dressed etc. Ironically am having some fabulous hair days now and skin looks good too. Tidied kitchen from last night's dinner/cooking, fed cats, put recycling out for collection, ironed a shirt for G and made him a coffee. Drove TO WORK!! Spent the day at work. 2.30pm now, and not flagging.... Need to do shopping later as we have no food in the house except gin-flavoured lime jelly. Don't ask! Had chicken and chips for dinner and went to bed about 10.30pm.

Day 5 (Tuesday) - woke at 6 again, got brekkie etc. Beetled about tidying the kitchen, hanging up wet washing and putting a new load on etc etc. G looked much more exhausted than me, but he was up until the wee hours as usual, watching TV. Got the shakes a little bit, so G had to drive in. Maybe too many drugs now? Oh well, only one more day's worth left! Had a scare as tried to move the Freelander and I only got the seat into position before it just stopped - couldn't even get the key out! I called the RAC while G had a look, but he found it was just a loose connection the battery so the RAC were called off, the car was moved and G drove like hellfire to get us to work (not that we were in a hurry, its just how he drives!). Had a good day at work, all feels remarkably under control!

Day 6 (Wednesday) - woke at 4am this time, my earliest yet! Was a bit peckish so got up about 4.30/4.45am and got myself a cuppa and a bowl of shreddies. Better than staring at the ceiling any longer. Went back to bed and slept again for a bit, but declined an early start with G so sent him off at 7am-ish and got up normal time-ish, in for work at 9am. OK day again, although decided not to take the afternoon dose of steroids as my voice was going shaky today. It does seem to have calmed down now, so I suspect I have overdone these particular drugs and won't take so many next time. It's all an experiment, I guess!! Have also decided to take Friday off as holiday to start some Xmas shopping or just sleep, depending how I feel. A quiet day. All is so in control at work that I can easily afford it (after all, I thought I'd be off all this week!!) and I have quite a few days to take and don't need to use them instead of sick leave now I have been given a decent sick leave entitlement. G is now cooking dinner, and I am looking forward to bonfire night tomorrow: cava already in the fridge, and G will go fetch his chiminea from his house and we'll have a burn up in the back garden (weather prevailing).

Day 7 (Thursday) - Work, done. All feeling remarkably under control, which I have decided to put down to my amazing management and team building skills (and the fact I have an brilliant, capable, supportive and motivated team!). Slept better last night, so I definitely think less steroids next time. Looking forward to my day off tomorrow - a day off without having to go to a hospital! Just christmas shopping/planning instead, methinks. Had a quiet evening - chilli con carne for dins, G lighting his bonfire in our BBQ/fire pit, and Luke visiting and playing Forza on the XBox. Too chilly for me outside - trembling in the cold makes my chest feel funny!!

Won't update this anymore unless something happens. I thought I would have some amazingly spectacular crash/sickness etc during this first week but I feel so really normal. A little shaky maybe, but nothing that stops me carrying on with everyday life, so it has all been good.

Lets keep fingers crossed that future treatments are this good. xxxx