Clever hair...

And so on to today.  I'd been told by lots of women going through this that their hair started to desert them on day 14 post first chemo.  Well, today is day 14, if counting the first day as the Friday I had the chemo to begin with.  I woke up, did a quick pillow scan, nope nothing untoward there.

A friend of mine came over this morning, we had coffee, chatted, went for a walk.. hair still intact.  Could my hair be more stalwart and trustworthy than other peoples' locks?

After she left, I went up to the loo, and was washing my hands (see, I'm a good girl) afterwards, when I noticed that there was quite a lot of hair in the sink.  Now, in common with anyone with longish hair that isn't necessarily brushed 100 strokes every morning and evening, the odd stray hair always ends up in the sink.  But this was more like eight or ten.... No big deal, right?  Sensible people would leave it at that.  Me, though, I have to grab a chunk of hair on the side of my head, just to see what happens....

Well, it wasn't dramatic.  I didn't pull a whole hank of hair out, but my hand certainly came away with far more than 'a strand or two'.  It was enough to do a colour swatch with.  So I wondered if the other side would do the same. No, how strange, the left hand side of my head is apparently holding faster than the right hand side. So, I did what anyone would do - went to show my husband what my new party trick was... and he was so upset.  I felt like a real mare!! Maybe it wasn't all that tactful - hey look - I'm going to be balder than you are soon.. but I hadn't thought he'd be so sad on my behalf.  I have to confess, looking at that hair between my fingers was more of a kick in the stomach than I'd anticipated.  It's one thing to shave your head out of choice, it's another to have no choice in the matter - or not to be able to choose to grow it back immediately if you decide that baldness is not your best image.

So, the clippers had better start warming up.  I'd said I'd clipper the lot off immediately it started coming out, but I've managed to make excuses today... but that won't last.  As soon as I'm shedding uncontrollably, it's off. Or as soon as the novelty of pulling my own hair out with absolutely no pain wears off.

I am still doing the mohican, just for 24 hours, just because I can. I've decided it's a che-mo-hican, and I will make sure photos are taken!!! Talking to an old, old friend (as in we've known each other since we were eleven, not as in she's one hundred years old), the other night, she told me she still has a photo of me with my original mohican somewhere.. now that would be amusing to see again!!!

But, the mohican will only be temporary, long enough to get some pics, and then it's all off, and I'll be getting all my bandanas out of the cupboard.  I really can't see me wearing my wig.. but never say never, it may have its uses, one day.  In the meantime, could I just ask that you all keep your fingers crossed that we've had the worst of the cold weather for this winter??!!

Take care, one and all - and just do me one favour, on your New Years Resolutions list add:

Check breasts at least once a month, not at the time of the month, and report any changes instantly to your doctor.

It won't cost you a penny - but it will make me feel so much better knowing that all my best girls are looking after themselves.

xxxxxxxxxx

Not much fun..

So, two weeks post first chemo, and what was it like? Shit. That's what it was like. 

The first couple of days I actually felt a bit of a fraud, apart from being slightly woolly headed, and the occasional wave of nausea (nothing compared to morning sickness), I was fine.  I could drive, I could eat, I could do stuff.. and I was thinking that this might just be a breeze...

So, I spent the weekend feeling okayish, certainly nothing dreadful.  On the Monday I was tired, and spent most of the day on the sofa, but Tuesday am I felt ok enough to drive myself to the hospital for my prosthesis fitting.  That was an adventure in itself, roads still snowy and icy, hospital carpark was a skating rink, but I made it in good time and with no mishaps.

Saw my breast care nurse, Shirley, for the fitting, and that was amusing.  Bear in mind that I had no idea what cup size I actually was post-op (pre-op, big bad boob was an easy D cup), well, we experimented with different bras and prostheses.. and the upshot is that I am probably a B, but possibly an A on a bad day.  Bonus to this is that at least I can pinch the bras that my fifteen year old has outgrown.... and that I can prob. get away with no bra at all in the summer.  I can live with that!!  The prosthesis is a weird silicone thing, with one long flat side, and on getting it home I realised that I hadn't actually paid much attention as to which way up it was supposed to go, but I think the long flat side goes to the bottom.  At the moment, the whole lot goes in the box.. as I haven't actually bothered wearing it yet.  I can see it being useful in the warmer weather, but right now, really, who can be bothered? 

Anyhow, that was Tuesday morning.  I got home, no probs.. but then spent the next three days flat out on the sofa.  No energy, no interest, no real will to do anything.  And the most revolting taste/sensation in my mouth.  Imagine your mouth on awakening with a vicious hangover - like it's covered in felt that's been dipped in the most vile tasting chemical.. then imagine living with it for days.  Nothing cut through it - though gherkins came close, temporarily - but also gave me bad heartburn. It was possibly the most distressing side effect so far - and no matter how many times I brushed my teeth/used mouthwash/drank any type of fluid, it just wouldn't give up.  It's faded considerably now, but I'm still semi-aware of a dryness/tang that shouldn't be there.

Fortunately, by Christmas Eve I was much better - and Christmas was fine.  I managed all the cooking, and stayed awake through all the present opening - so good result. But I have to be honest, there were a few times during that first lot when I wondered if I could really do this five more times....

One sixth way through...

Yup, it all happened and all went very well - far better than I could have hoped, in all honestly, so Odstock hospital, step up and take a big bow. (Hands clapping)

Not going to post too much now as a bit tired and woolly headed, but nothing dreadful occurring - just wanted to let you know that PICC line went in with very little effort (actually, no effort on my part at all), and chemo happened within an hour of PICC being put in.  Lovely, confident, chatty chemo nurse.

Oh.. and the best thing? Further to my distaste for the comments regarding how much worse chemo was 20 years ago?

OH asked the nurse how much the chemo itself had improved, as she was giving me the Epirubicin.. and the answer is ,.. not at all.  It's exactly the same drug as it was 20 years ago - the only difference being that the dose today is STRONGER, because they've figured out that we can have more without dying...

(Yes, the anti-nausea meds are much, much better, and I do thank God for that, God and whichever researcher discovered them).. but the chemo itself is still as nasty.  Now, why does that make me feel smug? I am so twisted these days, just call me pretzel pants.

More soon,  Big love to all

Oh FEC

Have felt sick and anxious all week at thought of chemo starting tomorrow - not a great way to prepare for a week where I will possibly feel sick and anxious with the side effects, or perhaps it is? Hey ho. Here's to yet another night with little sleep.

Funnily enough, having little sleep doesn't leave me in a very charitable mood towards well meaning people.  People,  I hasten to add, who I don't know all that well, so have to be, if not polite, at least vaguely non-committal to.  The next person who says to me "Oh, but chemo is nowhere near as bad as it was twenty years ago" is going to get it with both barrels.  And then I shall suggest that if chemo is such a fucking blast then maybe they would like to come along and have some too?

I suppose at this point I should apologise to any poor soul who had chemo twenty years ago.. but actually, I think anyone in that position would probably sympathise.

Have had some giggles this week - not all been doom and gloom - went into work today to watch the kids pantomime (they are teenagers with Aspergers Syndrome), and it was just the funniest thing ever.  The students were brilliant, and when things went awry, as they do with any school play, it was even funnier.  The entire audience was roaring with laughter, and it was probably the best way I could have killed some time today.  At the end, the Head announced that they would have a collection plate at the exit door, collecting this year for a fund that has touched the school especially - Cancer Research.   One of the staff lost her husband to cancer a few weeks ago, and then there's me.. so it was very touching that they chose this charity.  And I'm pleased to report that there were a good few twenty pound notes in the plate when I went by..... (not mine, I never have twenty pounds.  I did put my change in, I'm not Scrooge.. just skint).

Secret Santa at work today, too - so I stayed for that - thank you Denise for the chocs and gloves - chocs were lovely.  Had to eat them today as taste buds can change radically with chemo and I'd be gutted if I had to let the kids eat the chocs instead.  Would just be rude, really.  Now feeling sick still, but at least I can blame it on the chocolates.  Was going to drink the red wine I was also given.. working on the same theory, but have just hidden it instead, as don't really want to start the day with a headache.. and a whole bottle of wine does tend to do that to me these days.  Oh, the agony of ageing.  Surely it's not that long ago that we just drank all weekend and went to work on Monday morning?  Do that now, and I'd be on my knees until Thursday, at least.  Maybe it's just lack of practice? Perhaps we could regain that iron-stomach.. or perhaps you still have it, but have just been keeping in trim without me? For shame....

Have done my usual I'mnotpanickingI'mtidying so the house is looking reasonable after this evening's bout... in between the chocolates I have managed to change the bed, clean the bathroom, tidy the kitchen, clear the conservatory, empty the lunch boxes, get bread out of the freezer.. and all since 8pm.  Good job I wrote 'freezer' then as still need to get dog food out for tomorrow and would have forgotten and they'd have been eating sardines again.  They like sardines, as it happens, but if you think ordinary dog breath is bad, add a little olive oil and half a dozen pilchards to the mix.  Not good before 7.30am.

Anyhow - time is a ticking on, and I'm going to go to bed and see if I can fall asleep before 3am.  I've found that if I lie there, really, really still, and pretend to be asleep.. nothing actually happens.  If I read, on the other hand... no, nothing happens then, either.  I have to completely give up, get ready to get out of bed and come downstairs, and then I magically fall asleep, cos I haven't actually made it downstairs yet. Yet.

Will let you know how tomorrow goes.  Of course, there is still the possibility that it won't happen.. that the PICC will be put in and then the chemo ward will go 'oh no, we won't do chemo the same day as the line is put in'.  In that case, they can wait til after Christmas, I think.  What do you reckon?!

Peace and good will to all, keep repeating to oneself, to all, to all...

(but don't tell me how much better chemo is these days)

Picc n sick

Got the PICC appointment sorted - it will be on the same Friday and they will do the chemo later in the day, so just the one visit to the hospital on the 17th.  Apparently, the x-ray dept. rang the chemo ward to find out when they should do the PICC, and the chemo ward said I wouldn't be having chemo til about 2pm... though the appt. they gave me was for 9am!  I rang the chemo ward to double check (paranoia..) and the clerk was lovely but admitted that all timings on the ward are 'a bit vague'... which I'd rather know now than on the Friday when I'm sitting twiddling my thumbs with an increasingly irate husband who'd be demanding to know why they are not poisoning me at the minute they promised to......

I feel sick as a dog tonight, which I would like to say is in empathy with one of my new found friends who had her second lot of FEC today.  However, I think it is more likely down to the half bag of Jelly Babies that I ate before my OH brought me in a large bowl of icecream, which I also ate.  Have discovered that yet another drawback of being mono-breasted is that I can see how fat my stomach looks far more easily with no boob to disguise the view down my front...

AAAAAAAAAAAAARGH!!

Why is it that when something goes wrong it is ALWAYS at a time when you can't actually do anything to rectify it?

Now, this is really no biggie, but the frustration...grrrr.

I've been waiting to hear from the hospital for an appointment to have a PICC line put in.  Basically, it's a sort of tube that goes in through a vein in your arm, all the way up inside to sit just above the heart.  The chemo drugs can be given directly into this line, and bloods can be taken from it too.  Now, I know it sounds pretty gruesome, but the sad fact is, that having had my lymph nodes removed from under my left armpit, I can no longer have bloods taken from that arm.  So, down to right arm.  One of the drugs used in my chemotherapy regime (the E part of FEC), can really mess with your veins - causing them to harden etc, and then you can't use them in future.  Many people cope fine, and have nice prominent veins so the nurses have plenty of choice, and some, like me, have veins that see someone coming in a white coat and promptly dive for cover.

I discussed the possibilities of a PICC with the chemo nurse, and she told me that my veins were so cowardly, that a PICC would be eminently sensible, and she'd be in touch with radiography to sort out a time to have the line put in, about a week before chemo starts.

My appointment letter arrived this morning, Saturday, when all the departments are closed for the weekend, and what date and time have they given me for PICC insertion? Friday 17th December at 9am.. the SAME BLOODY TIME AS MY FIRST CHEMO IS DUE.

And what can I do about it? Nothing! Not until Monday morning, when I will have to phone them and see if they can give me an earlier appointment.  And if they can't? Well, I'm hoping I won't have to have the first chemo dose through an ordinary cannula, because I hate the bloody things, and with my luck, every vein in my arm would collapse in protest. GRRRRRRRR.

I'm sure you're reading this and thinking "Way to over-react, duh", and you'd be right.  It is only a hitch in the big scheme of things, after all, and probably easily rectified.. in 48 hours time.  The bigger issue for me is that this impotence, this inability to sort things immediately, is the root of all the issues that having bc has raised for me.

Turning 40 was a real watershed in my life - suddenly all the confidence/purpose that I'd 'fronted' for so many years became genuine.  I honestly found that I had the strength within to cut out any crap in my life that didn't have a right to be there, to stand up to so called friends who were really just leeches, to enjoy the work I did, regardless of the fact that it might be viewed as menial by family.. who cares? I work with great people, have a lot of fun doing it..earn just about enough and don't have to worry about childcare... life was GOOD.

BC has taken so much of that away, albeit temporarily.  I no longer have the control to dictate what happens and when it does, or to say 'enough of this shit' and walk away, I can't work at the moment and finances are once more a worry.  Most of the time I can just grit my teeth and plough on through, but when something as stupid as this appointment letter occurs, it just brings home to me how frustrating this whole journey is.

Phew.  Rant over!!!

Seeing the onc, and other weird abbreviations...

Here's the jargon: Dx 21/10/10, Mx and ANC 12/11/10, Grade 3, 3.2mm, 1 node affctd, Er+, HER2-, chemo: 3FEC, 3TAX, poss. rads, Tamox 5yrs.

No, a few weeks ago I wouldn't have had a clue what that meant either...

I saw the oncologist just over a week ago, and discussed the regime necessary.  Basically, it will be 6 cycles of chemotherapy, three weeks apart.  The first three will be FEC, three different chemo drugs (one beginning with F, one E and one C) and three of Taxotere, as swapping mid-way gives me the best prognosis.  This will definitely be followed by 5 years of Tamoxifen, which is an oestregen suppresant.. hello menopause!

I may or may not need radiotherapy after the chemotherapy.  Apparently during the team meeting to discuss my case it was stated that the surgery had achieved clear margins around the tumor (ie, tissue unaffected by cancer), but the oncologist brought up my pathology report on screen, and that disputed those findings.  So, someone is wrong.. and she's looking into the correct answer - which will then dictate whether rads (radiotherapy) are appropriate.  Basically, if the margins weren't clear, I will need three weeks of rads to my 'breast' area to eradicate any cells that may have been missed during surgery.  Rads will be a walk in the park post chemo.. but it does mean travelling daily to Southampton for treatment, as it isn't done in Salisbury.  Fun, fun, fun.  Have you see the parking situation at So'ton general hospital???

Then off I went this Monday just gone for my 'pre-chemo' chat with the chemo-nurses.  I will be starting treatment on 17th December, which will hopefully mean that I feel almost normal by Christmas - certainly the worst of any initial side effects (se's) should be done, any nausea etc etc.  Might be an interesting Christmas Dinner if I still feel rough!!! Pizza, anyone?

I will lose my hair, that's a cert.  Three out of the four chemo drugs in my regime cause hair loss.  I was offered something called a 'cold cap' which is nothing to do with inuit contraception.  It basically freezes your head whilst the chemo is being dripped in, which constricts the blood vessels in the scalp, so that hopefully the drug doesn't manage to wreak havoc in your hair follicles.  Unfortunately, it can mean that any cancer cells that have made it to the scalp don't get battered.. so secondary cancer on your head is a slim possibility.

Sod the secondaries... I just don't fancy sitting with an ice pack on my head for an hour at a time - so I turned that down.  Bye bye hair.  Good excuse to internet shop.. bandanas/hats/wigs... it's a whole new world.  Not sure that this weather is the greatest time to say goodbye to hair... but hey, it'll grow back.

I will prob. lose ALL hair.. everywhere.. and the only thing that worries me is .... eyebrows.  Have a horrid image of David Bowie in The Man who Fell to Earth.  Smooth skull is one thing.. no eyebrows is just plain freaky.  May have to drastically improve my ability to put make up on.  Did look into eyebrow tattoos (hey, a tattoo is a tattoo, right?), but at £350 that's a tad on the pricey side for a temporary fix.  Plus I may end up looking very strange and not being able to change it... so I think I'll stick to an eyebrow pencil.  And maybe false lashes..?

I ordered a wig off ebay (just for shits and giggles, as my son would say)... long, black with vibrant burgundy streaks throughout. It's great.  Looks brilliant on my daughter, and worryingly, also pretty good on son and husband, but not great on me.  Poss. would be ok with a ton of make-up, but if not, I'm sure it will see life at parties... and it was only twenty quid.  Now eyeing up a fire engine red bob... watch this space....  I do get a free wig from the NHS, and have my appointment with the Wig Lady on 13th December, but have a feeling that NHS wigs might be a little more conservative!

My son has advised me that when I take the decision to clipper off my hair (when it begins to fall out), that I may have a mohican again, just for 24 hours.  41 is definitely too old for mohicans, but mmmmm, I'm tempted.  Just because I can!  I did love my mohican.. at 17... and if nothing else, it would be good for horrifying my mother with all over again.

So that's me, right now - feeling perfectly ok, really.  My left arm is still tingling and sore from surgery, though it's not got an external mark on it, but apparently that should settle down within the next.. six months or so.  Or  possibly not at all, but I'll get used to it.  Did get advised by a friend on BCC to wear a tubigrip on it, and that does help, but it's so damn annoying.  You think losing a breast is as bad as it gets, but then you discover there's a whole joyful world of strange sensations to encounter.

I also get my prosthesis breast before Christmas, on Dec. 21st, so will have to go to M&S to get properly measured before then.  That will be interesting! I thought I was a 38DD... any bets? I have discovered I am actually only 34, max 36" around top.. but cup size is a mystery.....

Oh, and when you meet me, you can still hug me.  Doesn't feel weird to me! And I don't care if you can't stop staring at my chest.. gives me a chance to get used to it.. after all, I still intend to ultimately have a rack that the Pope himself wouldn't be able to take his eyes off....