Friday 25 April 2008

25 April

Ventured out into the land of the 'well' last night and went to see hubby's band, Citizen Keyne. (http://profile.myspace.com/index.cfm?fuseaction=user.viewprofile&friendID=22152946 ). Excellent fun! I may be biased but they really are getting rather good. (Possibly not your 'thing' if you're into Celine Dion and Cliff Richard though...)

On Thursday, I went into college for their validation meeting. All very high-up stuff, with a small selection of students talking to people from the University of Wales (who do the validating, i.e. actually award the degrees) and the General Chiropractic Council. Actually, they were very interesting people and I really enjoyed it. How very geeky of me. Anyway, the amazing news is that my degree course will be converted to a MASTERS'!! I'm well chuffed. Probably won't be as chuffed with the extra work...

Am also very excited as I have bought a chiropractic couch to practise (and eventually practice!) on. Can't wait for my order to arrive.

Missed college on 19th but went in 20-21 April. Glad I did. It was the first time this semester I've felt like I really did my practical work properly. I was on a real high! Exam Monday - not so bad, despite writing a complete load of b******s.

Pardon? I forgot something? Oh, yeah...that cancer thing. Not much to say. Madly hoping my veins are up to having chemo 3 on Weds and the nurses don't have to put a line in. My arm is not as painful as last time, though, so fingers crossed.

Saturday 19 April 2008

Catching up on first 2 chemos. Yay! for wigs!

18-19 April
Not two of my better days. Felt crap and v moody and could feel my blood sugar was low all day 18th. Food didn’t seem to help.
Hubby had a right go at me for being grumpy. I hate it when he’s like that. Reminds me of last couple of years with Smelly Ex. Makes me feel I’m only loved if I’m being good.


Bizarrely, I started thinking about my dad in the night. I’m sure other people have loved me unconditionally in my life but am not convinced. I want my dad. He loved me unconditionally. Bit of a pisser then, that’s he’s been dead 12 years. (And, sorry dad, am not planning on popping up to heaven to see you any time soon.)

Also decided to get on with it and fix some of the stuff that has been bugging me so I have double glazing people booked to quote for new windows next week. Will look out painters’ numbers too. Can’t bear living in worst house in the street any longer. Hubby has loads in the bank and could pay if he wants to but am too proud to ask again. Will put it on mortgage.

Meant to be studying for exam on Monday. Ho hum.

Going back to junior daughter and hubby's car. Still sticking to her having to be good to get privileges. Feeling like I'm a better parent for actually taking a stand for once.

17 April.
My mum means well…she sent me an article out of the Mail, a diary of a lady with breast cancer. Took me 24 hours to force myself to read it as I’m not that interested in others’ experiences. They’re just nothing like mine and no-one who writes about this seems to think the same way as me. Finally read it…WTF planet was the woman from?! £1,700 for a wig???!!! Mental. I’d spend it on something nice. (Or maybe on getting the hall decorated.) Still, I guess it made me feel a bit better as I’m less of a wuss than that silly old bag.


9-16 April
Chemo 2 was on 9th. A third done now! Had nice chat with two other ladies. One was bald and proud but still showing off her fab nails. The other was really scared but we cheered her up a bit, especially when I said I was wearing a wig, as she liked it lots.


Mum visited 9-11.
Not the best plan as I was very intolerant. Sorry mum.

Pink wig off ebay arrived on Saturday. Lovely and soft and pretty and only £13. Can’t see out but wore it with the fringe clipped back. I feel like me.

Got my pink wig trimmed on 15th. It looks so cool and is much more ‘me’ than my sensible ‘don’t look at me’ blonde one! Chrissie loved the cut and we played a nice little trick on Janet, kidding her it was home grown. Excellent.

16th. Got into a long conversation with the girl on the till in Next about hair colour. Brazened it out and talked about it airily, like when people talk about my home grown pink hair.

8 April. My birthday.
Hair everywhere except where I want it and I just could not make it look nice. Cue sense of humour failure. I even went for my pre-chemo blood test in a hat.
Chrissie (superstar hairdresser) fitted me in, styled my wig (went from v.v.boring to quite nice actually) and shaved my head. What a relief!
I’d been so grumpy earlier I hadn’t wanted to go for birthday dinner but took the wig out and everything was fine.


Catchup – Chemo 1-birthday
How lazy, to leave the blog for so long.


Homeopath tried to get me to defer chemo on the grounds that it is spring solstice. Hmmm.

First chemo:
Superstar Lynn took me and sat with me all through. Not the nicest experience ever. The cold chemical seeping into my arm were bad enough and I was very glad I hadn’t elected to go for the ‘cold cap’ to try to preserve my hair. Soooo thirsty. A little woozy afterwards and sleepy so I went to bed.

Wig appointment: Very funny! Lynn came again – the woman in charge of the wig service is like some mad old hippy and she went on about her 2 hamsters the whole time. Most of the wigs were huge on me (turns out I have a little head and face, not a hoofing great man-mush like I thought) and had a sort of ‘American housewife’ look about them. Eventually settled on ‘Cassie’ from Hot Hair in a safe, boring please-don’t-look-at-me ‘butterscotch’ blonde.

28 March: Finally figured out that the sore arm that I’d put down to walking into a door handle is my vein complaining about the chemo. Went and saw nurse at MacMillan unit. She advised a hot pad as first aid – very soothing. Looks like I may well end up having to have a ‘central line’ put in. Noooooooo! Had a bit of a brat-fit and a cry.

29 March – 4 April: McTimoney Spring School.
I so did not want to go, as I was staying away from home – apart from Mon night. Whole thing very tiring and I sleepy 14 hours one night!

Tues morning was GP appointment and got a 6 month sick note. Big relief. No way could I deal with work as well as all this. Also picked up wig.

Hair hanging on in there, but a few strays falling out.

Worst bit of the week was finding that on Tues morning, jnr daughter had scratched hubby’s pride-and-joy car in several places as she dragged her bike out of the garage. Was rather cross, as bike does not live in garage. Plus daughter did not own up. Needed to get back to college so we pulled her out of morning break to speak to her. Not nice. Feeling very mean as I have taken away her TV and computer and she has to earn them back. Plus she has to pay for the repair.

Feeling a complete failure.

Sunday 16 March 2008

Oh FEC!
Currently, I have a mix of emotions going on: Part of me thinks, ‘Right, I’ll show you, you nasty little cancer bastard!’ and the other part is panicing!
On 4 March, I had my first appointment with the oncologist. Well, her registrar. We talked about my results from the op and then looked at the prognosis, following various treatments (as calculated by ‘Adjuvant On Line’). There was around a 4% benefit to be had from adding chemo to the regime and I had to choose whether or not to go for it. My immediate reaction was that there is no way I could live with myself (or that my family would forgive me) if I didn’t do everything possible to rid myself of the cancer. If it comes back and I know I’ve thrown everything at it, then so be it. My over-riding feeling still have not changed.


I was back at the MacMillan unit on 11 March – bit of a shock to the system! There was this huge room, a bit like an old people’s home, and everyone had a selection of drips and cannulas on the go. Plus there were a variety of wigs and baldies in evidence. Big deep breath time. No treatment that day but I start on Wednesday. Gulp.

The treatment I’m having is 6 cycles of FEC. Sounds horrible. Not looking forward to being a baldie – no way will I look as sexy as hubby in a hairless state! Must admit, I won’t be sorry if I lose some weight. Surely there have to be some bonusus?! The ‘clean diet’ I’m supposed to follow sounds like a pain in the arse. (Sort of pregnancy diet.)

I’ve had my hair cut really short as it won’t be so bad if there’s only a bit to fall out. In a way, it’s a return to my old style, as I’ve been growing it for a year or so and had just got it into a short bob. Ho hum. It’s only hair. I’ve bleached it but can’t be bothered to dye it pink as I’m not going out anywhere. I’ve also been looking into eyebrow makeup and eyeliner to try to give my face a bit of definition without brows and lashes in much evidence. I’ve just had a thought: I might give the bright lipstick a go (think Kelly Osborne/Dita von Teese). I’m quite liking the Dita idea as it would go with pencilled brows and clearly fake eyeliner. I could even get a glam wig. LOL! Wish my stupid broadband connection was working so I could go and search for Dita wigs! I’ve also bought 2 cotton head wraps in my signature colours (pink and black) and a pink and black sewn bandana thing and a black ‘baker’s boy’ cap from Matalan and dug out 2 leopard-print scarves. (At this point, I have to explain that dyeing my hair pink was the best thing I ever did for my wardrobe. Since the only wearable colours with pink hair are black, white and pink, they are the only colours I buy. I have a few leopardskin pieces as I can’t resist it and a couple of turquoise or teal tops that I keep for blonde days.)

Faking it
I’m now the proud owner of a fake boob! It’s like an over-ambitious ‘chicken fillet’. Looks good in place but, boy, does it get sweaty! I can’t see me wearing it in summer and don’t wear it much now – only when I’m going out.
I thought bras would be a real problem but it’s not as bad as expected. I went to John Lewis in town and was fitted for bras and bought two sturdy over-shoulder-boulder-holders. Having discovered I’m actually a 34DD, the scale of the things shocked me, I can tell you! Unfortunately, although they look great under clothes, they are torture to wear, irritating my scar and rubbing under my arm. I’m thinking about taking them back but not sure I have the nerve.
Anyway, dear old Asda came to the rescue as they have several non-wires styles that are suitable and – bless them – they even have a mastectomy bra with a prosthesis pocket. Better still, the model on the packet is a young lovely, not some old granny so I’m not too embarrassed to buy one! M&S also seem to have some nice padded non-wired teeshirt bras so I may look at those too.


I’ve become obsessed with wig websites! I should have a NHS wig fitting appointment soon. Looked at the supplier’s website and, to be honest, I wouldn’t give you 57p, let alone 57 quid for many of the styles. (I suppose they’re OK if you’re after the vintage secretary look.) However, there are three styles that come in pink, and several nice cuts that come in more normal colours. I’m not too sure what my natural colour is as I’ve been dyeing my hair since I was 21 but I know that anything between baby blonde and liver chestnut looks just fine so surely there must be something worth wearing? My best mate is coming with me to help me choose. (Did I say how much I love her? Can I adopt her for my sister?)


Since I was diagnosed, I’ve been havering about whether or not pink hair is a good idea. Usually, I have the social skills to get past any misconceptions other people may have but when I’m wrong-footed myself, it doesn’t always work. My current view is that I’ll probably have a more natural colour of NHS wig (apparently, the retail prices are a LOT more than £57) and then get a pink one online for going out.

Homeopathy
Well, it still seems to be working as the hot flushed definitely stopped when I got support for my liver. Homeopath went on holiday and was meant to be back last week but doesn’t seem to be returning my calls. I think she’s trying to pass me on to her friend. When the internet is working, I’ll try emailing her and if she does not respond, I’ll find another one. (PS she rang while I was out and hubby passed the messag on v v late!)

I'm sooooo stressed about the chemo...I do hope she can help.


Non-cancer but nice
I rode our pony yesterday and it was the first time in ages that she went properly. Yay for my chiropractor who sorted out my back and gave Tup a treatment a few days ago!

Wednesday 27 February 2008

27 February
Time is whizzing by and I’m pleased at how things are going. Much, much less tired now but somehow I’m not achieving much – the house is messy and I haven’t done any studying. I have been riding three times though which was great, even if it was a bit of a mistake to pop over a small jump. I’ve also had a bra fitting and visited Mum. (No comment. We have Issues. Or maybe I do.)

Went back to hospital and found out my cancer was just 15mm diameter and they got nice clear margins. It’s hormone receptive (hence the tamoxifen) and HER2 negative. No cancer cells were found in the surrounding lymph or blood vessels or the 19 sampled lymph nodes. It was Grade 3 (energetically invasive) though. An appointment is being booked with the oncologist for next Wednesday so maybe then I’ll know more about treatment. Chemo was mentioned as a possibility as I’m still young, apparently and I’m almost definitely in line for radiotherapy. Fucking annoying, when I currently feel well but I’ll do what it takes to takes to try to ensure my long-term health as best I can.

A few reflections
The oedema has gone down a bit so the teas seem to be helping. Also, all this healthy eating is paying off as I have lost 9lbs since Christmas! Worst of the burning seems to have gone from my arm – think the homeopathic remedy I was given at my last homeopath visit helped – but the numb bit itches from time to time. New bras are brilliant, if practically impossible to get into. They seem to perform magic tricks and make my boobs look more even.

‘We’ve only been doing this for six months.’
‘Well. You’ve got the edge on me then. I‘ve scarcely been at it a month!’
Asked about a prosthesis last week and had appointment at hosp. Got there to very grumpy nurse who said you only get a to leave hospital with a ‘comfy’ (soft fake boob) if it’s a full mastectomy; for WLE, you normally wait 4-6 weeks.


Her explanation of the duff info was that they have ‘only’ been doing WLE at the hospital for around 6 months. Had to bite my tongue not to point out that she therefore had far more experience of this than me…Anyway, that little thought really made me shudder. I’m so grateful to still have some shape both sides. All this would have been so much more traumatic had I been really maimed*. WLE has been around for ages and I’m shocked to think how many women must be going about their business having had possibly unnecessary full mastectomies. I am so glad I pulled a face at that first appointment!

(*Hmmm…may have survived the ‘slash’ bit pretty well…still got the chance of being pretty well maimed when we get to the rads.)

Thursday 14 February 2008

First Week Home
Pleased to be home but a few ups and downs. I was such a nuisance in bed Monday night that hubby asked me to sleep in senior daughter’s room while she was at her dad’s on Tuesday, so he could get a bit of rest. That made me cry a lot, and made him feel bad too, but at least we slept!


During the week, loads of flowers arrived. They are absolutely beautiful! My mum, my class and both my offices sent lovely bouquets. They made me cry…but in a good way.

Darkest day so far was Thursday. Drain still draining a lot and leaking repeatedly. Every time I had to change the dressing and all my clothes, it made me feel sick. Poor mum got the brunt of it when she called. When the drain came out on Friday, it was amazing! I could feel al the negativity leaving me and tight muscles unravelling. Sooo much better. Beautiful weather at the weekend helped too!

Hints and tips
Must admit to being quite disgruntled that the hospital made no offer of any form of prosthesis. I’ve fashioned my own version, using an old bra cup from a bra that was a bit small, and a wonderbra pad so when I’m dressed, I look OK and at least my bra cup doesn’t hang half empty. Also regretting not going to have a mastectomy bra fitted before the op, as I can hardly take my wounds to M&S! Hopefully, it won’t be long ‘til the scabs are off, then I’ll go. In the meantime, I have taken the wires out of some of my old bras and that seem to be working OK.


Second Week Home
Big improvements! Been out on my bicycle and also been driving with no problems. Scar healing well, much better than I thought it would. Only slight downers are there is some oedema in the armpit area and the nerve damage affecting right arm (there‘s a numb bit surrounded by skin that thinks it’s burning). Been pointed at dandelion or nettle tea for oedema (both quite acceptable to me but bit of an acquired taste perhaps) which at least seems to have stopped any increase. Also a friend suggested Rescue Remedy in some lotion on the arm. I was a bit sceptical bit it really took the sting out of it. It may be my imagination but it was cheap and helpful so who cares?
Looking forward to going in to college at the weekend (although I doubt I’ll manage 3 days) and to riding next week.

Still going with the homeopathic remedies.

Planning to make some bags to give to the breast care unit, so other ladies don’t have to wander around with drains in carrier bags like I did and wondering if I can blag some free fabric off Ikea or John Lewis. I have some here so I’ll use that up first.

Had a bit of a pessimistic day on Tuesday and looked at wig web sites. That quite cheered my up! I can even get a pink bob wig, like my own hair but a bit longer, if I need one! Should I need one, there’s no way I’ll go for a ‘natural’ look. I don’t normally so why change? Anyway, that’s all hypothetical presently. I’ll find out about chemo on 25 Feb, when I go back to the hospital. (Must remember to take them some decent magazines!)

Over the weekend, I joined some forums for people with breast cancer. I was a bit depressing really so it’s not exactly an addictive pastime. There seems to be a shortage of people like me who don’t actually want to fess up to being ill unless it’s forced upon them. I mean, it’s not like I’m not aware that I have an invasive cancer which could kill me. (Hopefully HAD now the lump has gone!!!) However, if it keeps the smile on my face to pretend everything is fine, then why shouldn’t I?

At the moment, I still feel like a lucky girl. I found the cancer when it was still quite small and the breast care unit people seem positive. I wouldn’t have picked to have cancer, given the option, but seeing as I have, it’s not too much of a raw deal. I’m just happy to be having it treated and want to get on with my life!

Sunday 10 February 2008

Hospital

Out of hospital
It feels like a lifetime since my last post.

The day before the op, I took the day off to go riding and to clean my house...also had to get a filling as I broke a tooth the day before and a visit to the hospital to see the consultant again.

What the Consultant said
This set me mind at rest quite a lot. He showed me some pictures of a lady who'd had a wide local excision (the modern name for 'lumpectomy' which sums it up better than the old term). Obviously, they were not pretty pictures, being taken just 2 weeks after surgery. However, it cheered my up as I could see how I would be able to work with what was left to look pretty normal, at least when dresses.

He also mentioned the possibility of reconstruction, which was cheering as it was the first time that had come up, despite direct questions. To be honest, I don't fancy having the good boob 'taken in' to match but I don't much relish the idea of a silicon thing under my skin either. We'll see...

Last day
Busy, but I managed to have a ride and left everything as it should be. I managed to get whacked in the face out riding as I was sending a text and forgot to duck under a branch. Silly.It was also really nice that hubby and I got around to making love. Unprotected as it happens, which is just stupid, but I'll worry about that when I need to.

Hospital. Day 1.
Had to be there at 7.45 a.m. Felt very lonely waiting to be shown to my room, and even lonelier once I was in there. Put on a gown, got marked up for surgery, had a long talk with the anaesthetist and expressed all my worries about the anaesthetic to him.

The worries were born of the problems I have with local anaesthetics - I feel really spaced out and often very weepy and have to hide away and sleep off the after-effects. Oh, and they seem to wander. The anaesthetic for my breast biopsy numbed my face but the breast still ****ing hurt!

I walked to the operating theatre and got on the bed. Before I really got to grips with what was happening, I noticed that the room was going round unpleasantly, like it does when you've had waaay too many beers...and then I woke up in the recovery room. Sleepy, thirsty, bit sore...not too bad actually. Certainly not as bad as anticipated or as bad as a 'bad' local makes me feel.

Back to the ward, and learned the hard way that morphine does not agree with me. Hubby came to visit and the poor love had to listen to me throwing up...at least it wasn't beer! Not long after I stopped pressing the analgesia button, the sickness started to go away and glasses of water stayed in. By 9 pm, I was ready for a sandwich. One very last press of the morphine and off to sleep. Hmmm...not much luck there, as there were patients calling nurses every 5 minutes all night. I can only pity the nurses.

Hospital Day 2
What is with these people?! 6.30 a.m. on a Saturday, they want your blood pressure!

Much perkier. Had the hand thing out after having to beg and got dressed and wandered off to the hospital entrance. I must have looked like a really classy bird, with my 2 drains tucked into a Matalan carrier bag, fastened to my belt. Still, it was a btter look than the more usual dressing gown and tussled hair. I just could not bring myself to wander about in public like that!

I was a bit worried about what would happen if there was a fire, though, as there was no system of signing out or anyhting.

Really hungry so investigated what food I could buy...nothing healthy. I was quite deeply shocked! The hospital catering is awful and you can't even buy something decent to bump up the nutrient levels. Shocking.

Hubby brought daughters to visit, which was nice. Think we spent longer talking together than we do at home ordinarily!

In the evening, my mate visited. What a wonderful woman! She brought fruit, juice, chick lit, chocolate and shower gel and we had a good gossip, and a good giggle. She even did a bit of trigger point work on my bad back, which I'd put down to the hospital bed but my have been due to limbo-ing under a tree branch out riding!

Hospital Day 3
Sunday. Still pretty comfortable and no painkillers needed.

Soooooo boring. I was told I could go for a home visit and had to wait to be let out until 2. The afternoon whizzed by, just sitting on the sofa, chilling, and all too soon I had to be back. Still, at least I had a decent meal at home!

Leaving Hospital
Monday. Worst day so far. I was told at 10.30 that I could go as soon as I’d had the first drain out, been given some painkillers and a discharge letter. Er … helloo … quite how many painkillers have I used?

Had to wait for hubby to finish on the golf course and in the meantime I felt so sad, alone, quite bereft. I also got really angry as the whole concept of patient dignity seemed to fly out of the window! I was in a side room with ensuite and nurses kept on coming in, wanting to do things, without closing the door. One even invaded the bathroom for a long and very unhelpful chat about a friend of hers who’s undergoing chemo. I was naked, having a wash at the time!!! And I had to yell for someone to shut the door as I’d left my clothes on the bed and my towel didn’t cover a lot.

Eventually, hubby came. We got quite arsey about the discharge letter. I mean 4 hours to fill in a little form?!Home at last! It felt great.

Thursday 24 January 2008

Been a bit up and down over the last few days. I keep reading web sites and there is some grisly stuff out there.

However, some of it might be helpful. I got a self-help book of exercises for post-surgery as much of the pain post-surgery is (apparently) due to pronlems with the underarm incision so they can get at the lymph nodes. (And no way do I want to think about the size of the incision!!) I've also been looking at the Penn Brohn cancer care site and the stuff about diet was interesting. Basically, it's a practically vegan diet with a little animal protein, and having 8-10 servings of fruit and veg a day. I've been trying but not sure I'm too happy with the wind. Anyway, there's no way the hospital will lay that on! I think if anything I was happier following my instincts and eating what I fancied which was basically food from fresh ingredients (i.e. not bought-in stuff) as I wasn't craving chocolate and sugar like I am now. I've cut right back on tea and coffee and don't miss them. I've also practically knocked drinking on the head. I've lost a few pounds so that's a bonus. I've decided I can happily lost a total of 2 stone from my starting point so I'm not worrying about my weight unless it starts going up.

Yesterday, I had my first cranio-sacral therapy session. It's meant to help with emotional balancing as well as some physical symptoms. It was brilliant! I felt like I'd been doing yoga all day - all tall and calm. I must ask my therapist how often I can have that...

More depressing things: Underwear. I'm a strictly underwired and padded kinda gal so having to find a non-wired bra to wear is hospital is a bit grim. Makes me look a funny shape. I must try to find time to brave M&S or John Lewis and get one bra fitted. It would be very grim to have a prosthesis popping out of my teeshirt neckline. Not that it would be that untoward, I suppose, since everyone seems to wear chicken fillets now! Piercings: I'd already taken out the left nipple one 'cos it had been a bit manky, and the right one had to go when I had an x-ray on 2 Jan. My clit hood one has to come out before my op. : - ( No real idea why. Hopefully, it won't heal up in a day. I hope I'm in a private room as it might cause some shenanigans when hubby helps me put it back in - we're both getting so longsighted, we'll never get that little ball thing placed properly in the middle of the ring! I can see us chasing a little gold ball all over the place.