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
About Me
- Triphazard
- 41, mother, wife, friend, daugher. And I have breast cancer. This is somewhere for me to let off steam, share the funny side of it all (and there is a funny side) and generally keep track of my journey before my brain loses bits and pieces here and there and it all gets rosy tinted and possibly completely inaccurate.
Thursday, 30 December 2010
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....
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....
Friday, 17 December 2010
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
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
Thursday, 16 December 2010
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)
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)
Monday, 6 December 2010
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...
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...
Saturday, 4 December 2010
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!!!
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!!!
Thursday, 2 December 2010
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....
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....
Saturday, 20 November 2010
And the results are in...
and on balance, I'd call the news good. Poss more on the 'fair to middling' side of the good scale, but could def. be a lot worse.
You want technical spec? Have you ever known me to be able to spout technical stuff??? Well, actually, I am quite proud of my burgeoning medical vocabulary. Here's what my OH and I found out yesterday...
1. The tumour was 32mm
2. The cancer was graded at 3 (the wrong end of the aggressive scale, I'm afraid)
3. It is oestregen receptive, which means that oestregen in the body can fuel this type of tumour. This is fairly common - and actually is a positive thing, as by blocking oestregen output, we can raise the good prognosis considerably.
4. The cancer had spread to ONE lymph node. I had all 16 removed from under my left arm pit (known as an axillary clearance. Did you know your armpit was your axillar? I'm not sure it is, actually, I'm just guessing..)
5. The tumour was HER2 negative. This is GOOD news, HER2 pos. cancers are much more likely to recur.
So, how is this good news? Well, no lymph nodes would have been brilliant, obviously, but with such an aggressive cancer, catching it before it had spread further than one node is good good good news. If you have to have a breast cancer, to maximise successful treatment, you want that cancer to be oestregen positive and HER2 negative - and mine complies.
Now... weighing up my young age (at 41 you don't think you'll hear that phrase with regards to yourself, but with bc, you hear it quite often), the lymph node involvement and the aggressive nature of the tumour.... drumroll...
Chemotherapy.
This, apparently starts at around 6 weeks post-op, so that the wound has had a good opportunity to heal up. Six weeks to the day of my op is Christmas Eve. Chances are I'll have had the first session by Christmas, but then, I suppose, if that happens, the sooner it starts the sooner it will be over and done with. I see the oncologist on Monday at 4pm, and may well find out then when I'm due to begin.
It will prob. be one session every three weeks for six sessions - so, adding in recovery time after the last round of chemo, and the wait to start chemo... we're looking at the next six months.
What can I say? Bring it on.......
You want technical spec? Have you ever known me to be able to spout technical stuff??? Well, actually, I am quite proud of my burgeoning medical vocabulary. Here's what my OH and I found out yesterday...
1. The tumour was 32mm
2. The cancer was graded at 3 (the wrong end of the aggressive scale, I'm afraid)
3. It is oestregen receptive, which means that oestregen in the body can fuel this type of tumour. This is fairly common - and actually is a positive thing, as by blocking oestregen output, we can raise the good prognosis considerably.
4. The cancer had spread to ONE lymph node. I had all 16 removed from under my left arm pit (known as an axillary clearance. Did you know your armpit was your axillar? I'm not sure it is, actually, I'm just guessing..)
5. The tumour was HER2 negative. This is GOOD news, HER2 pos. cancers are much more likely to recur.
So, how is this good news? Well, no lymph nodes would have been brilliant, obviously, but with such an aggressive cancer, catching it before it had spread further than one node is good good good news. If you have to have a breast cancer, to maximise successful treatment, you want that cancer to be oestregen positive and HER2 negative - and mine complies.
Now... weighing up my young age (at 41 you don't think you'll hear that phrase with regards to yourself, but with bc, you hear it quite often), the lymph node involvement and the aggressive nature of the tumour.... drumroll...
Chemotherapy.
This, apparently starts at around 6 weeks post-op, so that the wound has had a good opportunity to heal up. Six weeks to the day of my op is Christmas Eve. Chances are I'll have had the first session by Christmas, but then, I suppose, if that happens, the sooner it starts the sooner it will be over and done with. I see the oncologist on Monday at 4pm, and may well find out then when I'm due to begin.
It will prob. be one session every three weeks for six sessions - so, adding in recovery time after the last round of chemo, and the wait to start chemo... we're looking at the next six months.
What can I say? Bring it on.......
Monday, 15 November 2010
Best friends and Jelly Babies..
Utterly knackered now, but chuffed to bits as a really close friend just caught the bus out to see me after she'd finished work.. and brought me a big box of Jelly Babies!!! Clare - you star xxxx I won't eat them all at once, I promise...
Seen two different District Nurses now, and I am so grateful to live in a county where this service is offered. I know that others going through this are not so lucky, and have to get to their doctors or even the hospital to have dressings/drains checked etc - not an easy thing to do when you feel like death and cannot drive.. so for once, thank you Wiltshire! I've actually seen my 'wound'.. is it just me, or does 'wound' sound like an accidental injury? Anyway, given due consideration, it is prettier under a white dressing.. very black and spidery with all the stitches at the moment.. bit like having a tarantula roadkill tattoo across my chest. Not a look I plan on keeping.
I am definitely feeling better today as I am starting to feel bored, and having to firmly stay planted in my seat and do nothing.. grrr. Am starting to wonder if I am a late onset developer of some hyperactivity disorder, but think actually it's just boredom and quite normal. Let's just deal with one issue at a time. Although it was on my hospital notes to be given a huge knock out med on night one, which I declined, and the nurse was surprised to see had been written up for me.. possibly the surgeon figured it might keep me in bed for at least a few hours. Didn't work, but then, my theory is that at least I'm avoiding DVT.
Been on the phone for hours - mum/friends and finally rang up to claim on my credit card protection policies.. so glad I'd never actually got around to cancelling them and trying to claim back the money - though if either don't pay out, then I will be looking at that option as I never actually asked for either. Each claim will take around 15 days to put into effect, in the meantime, please pay as normal. Hmmph. That will take us just to the end of the month, so I'll have to find this month's payment after all. Poo.
Been talking about flashing on the breastcancercare website - which begs the question, can you actually flash a non-breast?
I am going to have to get out and about soon or I'll have nothing to write about...
Take care xxxx
Seen two different District Nurses now, and I am so grateful to live in a county where this service is offered. I know that others going through this are not so lucky, and have to get to their doctors or even the hospital to have dressings/drains checked etc - not an easy thing to do when you feel like death and cannot drive.. so for once, thank you Wiltshire! I've actually seen my 'wound'.. is it just me, or does 'wound' sound like an accidental injury? Anyway, given due consideration, it is prettier under a white dressing.. very black and spidery with all the stitches at the moment.. bit like having a tarantula roadkill tattoo across my chest. Not a look I plan on keeping.
I am definitely feeling better today as I am starting to feel bored, and having to firmly stay planted in my seat and do nothing.. grrr. Am starting to wonder if I am a late onset developer of some hyperactivity disorder, but think actually it's just boredom and quite normal. Let's just deal with one issue at a time. Although it was on my hospital notes to be given a huge knock out med on night one, which I declined, and the nurse was surprised to see had been written up for me.. possibly the surgeon figured it might keep me in bed for at least a few hours. Didn't work, but then, my theory is that at least I'm avoiding DVT.
Been on the phone for hours - mum/friends and finally rang up to claim on my credit card protection policies.. so glad I'd never actually got around to cancelling them and trying to claim back the money - though if either don't pay out, then I will be looking at that option as I never actually asked for either. Each claim will take around 15 days to put into effect, in the meantime, please pay as normal. Hmmph. That will take us just to the end of the month, so I'll have to find this month's payment after all. Poo.
Been talking about flashing on the breastcancercare website - which begs the question, can you actually flash a non-breast?
I am going to have to get out and about soon or I'll have nothing to write about...
Take care xxxx
Sunday, 14 November 2010
Those not so good moments..
I have discovered that I am not actually an automaton who can plough through this with no emotion - which is almost a relief. I now know that my tears and fears are really just lurking around the corner, waiting for an unguarded moment to emerge - <Gotcha!!> - before they are swiftly banished again. I still maintain that curling up in a corner, rocking and sobbing, will make no difference to the outcome of this disease, so there is very little point in going down that road - plus it would make life even harder for the people I love, who are having to deal with their own emotions and fears - so I do not intend to collapse into a soggy mess, or take to my bed for the next eight months.
However, please bear with me if just occasionally something erupts.
So far, the only real tears I have shed are:
1. On diagnosis. Not for me, but at the realisation that I have three daughters - and that breast cancer is not the sort of thing I was planning on bequeathing them as my legacy.
2. Ten minutes before surgery. I went for a wee before getting changed into the hospital gown (brain still functioning enough to figure out that walking across the ward to the loo in jeans would be a lot more comfortable than making the same journey in a back fastening gown). No sooner had I sat down than my eyes started streaming - I honestly had no idea that that was about to happen!! No matter, a couple of good snorts and a nose blow, and I was fine.
3. On the trolley in the side room where they put you to sleep (I'm sure my medical/technical vocab will improve, but either I don't know the name of this room, or I'm actually a little more wiped out than I'm acknowledging right now). Again - tears that just streamed down my face, that I felt I had no control over - I didn't know they were about to begin, and I certainly didn't feel capable of stopping them!
4. This morning - when my OH woke me up after the first night of deep sleep I've had in a month. I think I woke up sobbing - and it was genuine sobs - the sort that come from your toes and just wail out through your mouth - the sort that you stop doing when you become a mum because you don't want to frighten the children - the sort of sobs that really you only hear from a very small child because they haven't yet learned to 'control their emotions'. The sort that just happen, and leave you not really sure what you were crying for. The loss of a breast? The fear of the future? The questions are all too big and incomprehensible for me to pigeonhole. I don't know why exactly I cried, but I do know that I feel relieved that I can cry.
And, if I can cry - then I guess it's ok if my friends cry too. But it's also ok if they don't. Just know that I love you all, dearly - and I am so proud to know so many amazing women. (and some exceptional men)
xxxx
However, please bear with me if just occasionally something erupts.
So far, the only real tears I have shed are:
1. On diagnosis. Not for me, but at the realisation that I have three daughters - and that breast cancer is not the sort of thing I was planning on bequeathing them as my legacy.
2. Ten minutes before surgery. I went for a wee before getting changed into the hospital gown (brain still functioning enough to figure out that walking across the ward to the loo in jeans would be a lot more comfortable than making the same journey in a back fastening gown). No sooner had I sat down than my eyes started streaming - I honestly had no idea that that was about to happen!! No matter, a couple of good snorts and a nose blow, and I was fine.
3. On the trolley in the side room where they put you to sleep (I'm sure my medical/technical vocab will improve, but either I don't know the name of this room, or I'm actually a little more wiped out than I'm acknowledging right now). Again - tears that just streamed down my face, that I felt I had no control over - I didn't know they were about to begin, and I certainly didn't feel capable of stopping them!
4. This morning - when my OH woke me up after the first night of deep sleep I've had in a month. I think I woke up sobbing - and it was genuine sobs - the sort that come from your toes and just wail out through your mouth - the sort that you stop doing when you become a mum because you don't want to frighten the children - the sort of sobs that really you only hear from a very small child because they haven't yet learned to 'control their emotions'. The sort that just happen, and leave you not really sure what you were crying for. The loss of a breast? The fear of the future? The questions are all too big and incomprehensible for me to pigeonhole. I don't know why exactly I cried, but I do know that I feel relieved that I can cry.
And, if I can cry - then I guess it's ok if my friends cry too. But it's also ok if they don't. Just know that I love you all, dearly - and I am so proud to know so many amazing women. (and some exceptional men)
xxxx
Saturday, 13 November 2010
First full day as a mono-breasted woman..
I'm home!! I was discharged at 10am this morning, absolutely true to the nurses' words - never been so efficiently processed before.. when one of the kids has been in, we've always had to wait for the pharmacy to send up meds/doctor to reach us on rounds/nurse to take out canula etc etc, and been hanging round for hours. Not today!
Op all went smoothly - though apparently I woke up in theatre! I have no recollection of this whatsoever, but my surgeon came to see me once I was out of recovery, and asked if I remembered waking up! She told me it was as they were 'tidying up', and I cheerily said hello, how were they doing and then was thunked under again by the anaethetist! I came round very rapidly in recovery too, but got the shudders, so was enveloped in a fab hot air bubble for 20 minutes - like living in a thermos flask, just gorgeous.
It occurred to me about half an hour after my post-op chat with the surgeon that when she'd said 'tidying up' she was referring to my chest area, and not having a quick wipe down of the tables and a hoover after sewing me up..
Moved to the ward, the breast care nurse came to see me, gave me a 'softie' which is basically a fluff filled fibre pocket to stick down my bra until I get measured for a prosthesis. Honestly? Not sure I'm going to bother with the softie.. they are so lightweight that I've heard tales of them migrating out of the bra - can I really be bothered? Luckily, with it being November, layering is the name of the game for everyone, so scarf and coat should suffice when I go out. I don't think my breasts are the first thing people ever notice anyway - they weren't that impressive at 21, never mind at 41.
I did have a peek in the mirror when I put my new pjs on and got out of the hospital gown - it's amazingly neatly bandaged and just, well, flat! It doesn't even look like a chest area.. which brings me to wonder, if someone had bi-lateral mx (both boobs off), could they walk around topless in the summer? I think the lack of nipples would look seriously freaky, but you can get (apparently, the things we learn) stick on nipples... I think I'd be well tempted if I had no boobs - as it is, I already have less than half the moobs you see in town in the summer.. (Moob = Man boob, just in case!!). I'd thought a while back that it would be a sort of breastless barbie image I'd have - pink and shiny and flat - and to be honest, right now, that's not too far off the mark. Completely unthreatening, but let's be honest, completely sexless, too. I have more sex appeal in my little fingernail now than in the whole of my left breast, which is weird.
Still can't get past the image of my left breast living a life on its own - completely separate to me. Was discussing this with my son just now - def. spongebob imagery - of a cartoon breast whizzing around a hospital in a wheelchair from department to department (oncology/pathology.. next stop morgue..), hurtling out of a lift, stopping for a coffee .. I know, utterly ridiculous, yet strangely compelling. It also occurs to me that my breast will have been handled and scrutinised by more people in the last 24 hours than have seen it at all in the last 20 years...
I have my post-op appointment next Friday, so that'll be the results of the biopsies of tumour and all lymph nodes then. Can't get worried about that yet, just got to remember to do my arm exercises (reach out arm, pick up coffee, reach out arm, pick up phone, twirl wrist, point and click remote). Oh, and tell work that I've apparently been signed off for six weeks....
(I said two - it was close!)
Op all went smoothly - though apparently I woke up in theatre! I have no recollection of this whatsoever, but my surgeon came to see me once I was out of recovery, and asked if I remembered waking up! She told me it was as they were 'tidying up', and I cheerily said hello, how were they doing and then was thunked under again by the anaethetist! I came round very rapidly in recovery too, but got the shudders, so was enveloped in a fab hot air bubble for 20 minutes - like living in a thermos flask, just gorgeous.
It occurred to me about half an hour after my post-op chat with the surgeon that when she'd said 'tidying up' she was referring to my chest area, and not having a quick wipe down of the tables and a hoover after sewing me up..
Moved to the ward, the breast care nurse came to see me, gave me a 'softie' which is basically a fluff filled fibre pocket to stick down my bra until I get measured for a prosthesis. Honestly? Not sure I'm going to bother with the softie.. they are so lightweight that I've heard tales of them migrating out of the bra - can I really be bothered? Luckily, with it being November, layering is the name of the game for everyone, so scarf and coat should suffice when I go out. I don't think my breasts are the first thing people ever notice anyway - they weren't that impressive at 21, never mind at 41.
I did have a peek in the mirror when I put my new pjs on and got out of the hospital gown - it's amazingly neatly bandaged and just, well, flat! It doesn't even look like a chest area.. which brings me to wonder, if someone had bi-lateral mx (both boobs off), could they walk around topless in the summer? I think the lack of nipples would look seriously freaky, but you can get (apparently, the things we learn) stick on nipples... I think I'd be well tempted if I had no boobs - as it is, I already have less than half the moobs you see in town in the summer.. (Moob = Man boob, just in case!!). I'd thought a while back that it would be a sort of breastless barbie image I'd have - pink and shiny and flat - and to be honest, right now, that's not too far off the mark. Completely unthreatening, but let's be honest, completely sexless, too. I have more sex appeal in my little fingernail now than in the whole of my left breast, which is weird.
Still can't get past the image of my left breast living a life on its own - completely separate to me. Was discussing this with my son just now - def. spongebob imagery - of a cartoon breast whizzing around a hospital in a wheelchair from department to department (oncology/pathology.. next stop morgue..), hurtling out of a lift, stopping for a coffee .. I know, utterly ridiculous, yet strangely compelling. It also occurs to me that my breast will have been handled and scrutinised by more people in the last 24 hours than have seen it at all in the last 20 years...
I have my post-op appointment next Friday, so that'll be the results of the biopsies of tumour and all lymph nodes then. Can't get worried about that yet, just got to remember to do my arm exercises (reach out arm, pick up coffee, reach out arm, pick up phone, twirl wrist, point and click remote). Oh, and tell work that I've apparently been signed off for six weeks....
(I said two - it was close!)
Friday, 12 November 2010
******@@@@@@@@@@!!!!******
It's Friday 12th November - the day of the op is here. I know, I know, I wrote nothing about the pre-op, but I was tired, ok? That went fine - I saw three different nurses, did all the usual medical stuff (am I the only person who puts on weight at times of stress??), had a chest x-ray, scary stuff, obviously.. but there were good moments - like the question 'Do you have a normal diet?'. Well, if I'm honest, I've eaten one hell of a lot of jelly babies lately.
I wonder how often the pre-theatre/admission discussion descends to debating the relative merits of jelly babies vs. the world. Did you know Hawkins Bazaar sell Jelly Geriatrics? I didn't, but will now have to get my mate Clare's mum some for Christmas...
Clare had come with me for this appointment, which went on quite a bit longer than anticipated because of the detour to radiography, so I knew I was going to be later back to work than anticipated. I also knew that no one was going to say a word.. so we went to Tesco's en route, because I needed to get those new knickers. Which went so well with the new skinny grey jeans, that just cried out for the high lace up boots...
It has just occurred to me that you won't know what knickers I'm talking about unless you're one of the wonderful women on the Breast Cancer Care Forum. Hospital knickers of course. How can we possibly go in to have our breasts savaged, without new knickers? This topic caused much amusement, but I think we all, to a woman, have been out and purchased new pants. I blame being told to put clean knickers on every day 'in case you get run over by a bus'. Hospitals and dignified underwear will forever be inextricably linked.
10 new pairs of knickers ended up costing over £40. Now, I realise that there are those amongst us who habitually pay over £4 for one pair of pants, but it doesn't happen in my house. (The boots are great though - sod how much the next pay packet might be...)
On a final note - do you know where you may be carrying the MRSA bug?
Hands up who said nose? Clever
Hands up who said groin? Even cleverer. Never thought I'd see the day when I had to stick a cotton bud down there....
I Digress...
as usual. Anyhow it's six in the morning, and I discovered that actually when it comes to having a 'last' cup of coffee, I can get out of bed pretty damn quick. I have to be at the hospital by 8am, I'm all packed, just need to have a shower and I'll be good to go. Of course, my OH needs to get out of bed first as he will be driving. And I'll need to get dressed post shower, which will be interesting as it will be the last time I'm going to need a bra in the size I'll be putting on... There's no way on earth that remaining boob (GB, 'Good Boob') will need the same cup size as BB does, and BB is going to be fairly unrecognisable as a breast later on today - as I daresay once it's unattached from me it will end up sandwiched between various glass slides and strewn around a laboratory somewhere before ultimately being cremated. Strange to think that one of my breasts will be living a separate and possibly fascinating yet short lived life somewhere else in the same hospital. It had better behave.
I wonder how often the pre-theatre/admission discussion descends to debating the relative merits of jelly babies vs. the world. Did you know Hawkins Bazaar sell Jelly Geriatrics? I didn't, but will now have to get my mate Clare's mum some for Christmas...
Clare had come with me for this appointment, which went on quite a bit longer than anticipated because of the detour to radiography, so I knew I was going to be later back to work than anticipated. I also knew that no one was going to say a word.. so we went to Tesco's en route, because I needed to get those new knickers. Which went so well with the new skinny grey jeans, that just cried out for the high lace up boots...
It has just occurred to me that you won't know what knickers I'm talking about unless you're one of the wonderful women on the Breast Cancer Care Forum. Hospital knickers of course. How can we possibly go in to have our breasts savaged, without new knickers? This topic caused much amusement, but I think we all, to a woman, have been out and purchased new pants. I blame being told to put clean knickers on every day 'in case you get run over by a bus'. Hospitals and dignified underwear will forever be inextricably linked.
10 new pairs of knickers ended up costing over £40. Now, I realise that there are those amongst us who habitually pay over £4 for one pair of pants, but it doesn't happen in my house. (The boots are great though - sod how much the next pay packet might be...)
On a final note - do you know where you may be carrying the MRSA bug?
Hands up who said nose? Clever
Hands up who said groin? Even cleverer. Never thought I'd see the day when I had to stick a cotton bud down there....
I Digress...
as usual. Anyhow it's six in the morning, and I discovered that actually when it comes to having a 'last' cup of coffee, I can get out of bed pretty damn quick. I have to be at the hospital by 8am, I'm all packed, just need to have a shower and I'll be good to go. Of course, my OH needs to get out of bed first as he will be driving. And I'll need to get dressed post shower, which will be interesting as it will be the last time I'm going to need a bra in the size I'll be putting on... There's no way on earth that remaining boob (GB, 'Good Boob') will need the same cup size as BB does, and BB is going to be fairly unrecognisable as a breast later on today - as I daresay once it's unattached from me it will end up sandwiched between various glass slides and strewn around a laboratory somewhere before ultimately being cremated. Strange to think that one of my breasts will be living a separate and possibly fascinating yet short lived life somewhere else in the same hospital. It had better behave.
Monday, 8 November 2010
And so to today..
It's Monday 8th November, and I have my pre-op appointment in two days' time. The odd butterfly is starting to rumble around in my belly, but my most pressing concern is financial. How will we cope without my income? Granted, it's not huge, but it does make a difference between being fairly comfortable and being flat broke with Christmas approaching. And MOTs. And Water Rates/Credit Card Bills/Vet Bills... Both my bosses (two different jobs) have been supportive and understanding, but one job doesn't pay me enough for the few hours I do to mean I pay N.I, so no SSP on that one, and the other one is quite probably going to fall apart without me there, smiling sweetly and lying through my teeth that there's nothing to worry about. On a daily basis. It's worked for eighteen months, and til now, I saw no reason why that couldn't continue. In fact, I'm so concerned about surviving on SSP that I haven't even googled it yet to see how much it is per week, because I know then I will go from concern to blind panic.
I've also discovered that I'm not very good at telling people I have Breast Cancer. It's not that I'm trying to hide it - quite the opposite, but I do tend to blurt it out. Loudly. In Marks & Sparks, which is really not the correct place to turn a friend into an emotional wreck whilst I run away and hunt for post-op bras. And at a friend's party for her brother's 40th birthday. Well, they were all drunk and I was stone cold sober (driving home after, no babysitter other than my teenagers.. who would have been quite happy to babysit over night. Hmm. Right) and I was getting bored of them all being drunk and saying 'so, Trip.. how are you? Really?'. So I told them. Then went home, because the party was going flat anyhow. And it was raining.
The one lesson I have really learned from this is that if you haven't seen someone in a long time, don't ask them SO HOW ARE YOU? Because they might just scare the crap out of you and ruin your day. Though, to be honest, I'm quite upbeat about it all at the moment, and generally manage to raise a laugh or six at my own expense, but I have felt as though I've been riding a swathe of destruction through my nearest and dearest, leaving them sobbing on the banks whilst I trundle on regardless. Even my eldest daughter's friends cried when she told them. It's almost enough to make me want to apologise for having breast cancer and upsetting everyone.
Obviously, talking is fairly cathartic, and obviously, I've not had much chance to talk to anyone much today - so apologies for the enormous length of these first posts. I'd say I'll try to keep the next ones short, but I'd be lying. Time for bed.. two more sleeps before the pre-op.....
I've also discovered that I'm not very good at telling people I have Breast Cancer. It's not that I'm trying to hide it - quite the opposite, but I do tend to blurt it out. Loudly. In Marks & Sparks, which is really not the correct place to turn a friend into an emotional wreck whilst I run away and hunt for post-op bras. And at a friend's party for her brother's 40th birthday. Well, they were all drunk and I was stone cold sober (driving home after, no babysitter other than my teenagers.. who would have been quite happy to babysit over night. Hmm. Right) and I was getting bored of them all being drunk and saying 'so, Trip.. how are you? Really?'. So I told them. Then went home, because the party was going flat anyhow. And it was raining.
The one lesson I have really learned from this is that if you haven't seen someone in a long time, don't ask them SO HOW ARE YOU? Because they might just scare the crap out of you and ruin your day. Though, to be honest, I'm quite upbeat about it all at the moment, and generally manage to raise a laugh or six at my own expense, but I have felt as though I've been riding a swathe of destruction through my nearest and dearest, leaving them sobbing on the banks whilst I trundle on regardless. Even my eldest daughter's friends cried when she told them. It's almost enough to make me want to apologise for having breast cancer and upsetting everyone.
Obviously, talking is fairly cathartic, and obviously, I've not had much chance to talk to anyone much today - so apologies for the enormous length of these first posts. I'd say I'll try to keep the next ones short, but I'd be lying. Time for bed.. two more sleeps before the pre-op.....
Lump or breast?
I've decided to go for the mastectomy. Where the lump is right at the top (cleavage side) of my breast, removing it will leave a mammoth crater, and apparently the rads will further affect the appearance. With a mastectomy (mx) - emotionally, the whole damn thing is gone, thank god.. and there is the additional bonus of the prospect of a complete boob job somewhen down the line.
I have ALWAYS wanted a boob job. I've said before about my lopsided boobs - and that's bad enough, but after breastfeeding and yo-yo dieting, well, they're not a pretty sight. Particularly lefty.. henceforth known as BAD BOOB. So, taking it all away and starting afresh does have a certain appeal. Balanced and pert.
OH gave me a hug whilst we were discussing this, arms wrapped lovingly around his wife, and whispered gently in my ear ... can you ask to have them put on your back...
I have ALWAYS wanted a boob job. I've said before about my lopsided boobs - and that's bad enough, but after breastfeeding and yo-yo dieting, well, they're not a pretty sight. Particularly lefty.. henceforth known as BAD BOOB. So, taking it all away and starting afresh does have a certain appeal. Balanced and pert.
OH gave me a hug whilst we were discussing this, arms wrapped lovingly around his wife, and whispered gently in my ear ... can you ask to have them put on your back...
One week later, still waiting..
No word, so I rang up again. Not something that would have bothered me in the years bbc (before breast cancer), but something that was turning me into a panicky idiot now. Managed to find out that my pre-op date was set for 10th November, the op itself tbc.
A letter arrived five days later - pre-op on 10th. Op on 12th. Ten days away.
At this point, I was still free to choose lumpectomy or mastectomy. Apparently I don't have to make my mind up until I actually go in for surgery, but personally, I think that making a spur of the moment decision under slightly stressful circumstances is probably not advisable.
A letter arrived five days later - pre-op on 10th. Op on 12th. Ten days away.
At this point, I was still free to choose lumpectomy or mastectomy. Apparently I don't have to make my mind up until I actually go in for surgery, but personally, I think that making a spur of the moment decision under slightly stressful circumstances is probably not advisable.
Waiting (Part Two)
A week later, I saw the head honcho, a lovely lady, who explained kindly to my OH (who I had brought along this time), that it was breast cancer, but it was all very treatable these days and there was a lot they could offer me. OH seemed vastly relieved that I wasn't in imminent danger of dropping dead, so it was worth taking him along for that, and the occasional hand pat, but I'm not sure he actually took another word in. Fortunately, I'd taken one of my very best friends in as duty note taker and question asker. I had managed to list a lot of questions in an old french exercise book I'd found in my eldest daughter's bedroom. Once I'd ripped out the three pieces of homework she'd managed to complete in a year, I was good to go.
In actual fact, there were a lot of questions I didn't think to ask, but I did find out this:
The tumour is 3cms in size. That's quite big.
It is oestregen receptive. That means tamoxifen after any other treatment.
The treatment is likely to send me hurtling into the menopause, but no, I won't get away with being vile for an entire year or two. (Watch me)
I could either have a lumpectomy, followed by radiotherapy, or a mammogram. Both/either of which may be followed by chemo, possibly.
The FNA of my lymph nodes was clear, but don't get too excited about that. They want to strip rather more out of my armpit during the op.
Which would be within three or four weeks. I'd be contacted with the dates within the next day or two.
In actual fact, there were a lot of questions I didn't think to ask, but I did find out this:
The tumour is 3cms in size. That's quite big.
It is oestregen receptive. That means tamoxifen after any other treatment.
The treatment is likely to send me hurtling into the menopause, but no, I won't get away with being vile for an entire year or two. (Watch me)
I could either have a lumpectomy, followed by radiotherapy, or a mammogram. Both/either of which may be followed by chemo, possibly.
The FNA of my lymph nodes was clear, but don't get too excited about that. They want to strip rather more out of my armpit during the op.
Which would be within three or four weeks. I'd be contacted with the dates within the next day or two.
How tense can one woman get?
Just a week into this saga, and already I'm a neurotic, whingeing old gas bag. I don't even recognise myself! Ok, so I haven't always been supremely confident, and I've never been a size 10, but since turning 40 I've been pretty much happy with me - and certainly not afraid to put my opinions/views across. 41, to now, has been a good age to be. I have two different jobs, neither of which is mentally challenging, but the people I work with are wonderful, and they both fit in around school hours, which as a mum of four, is important. I have a great, if often stroppy and demanding, husband, who I wouldn't swap for anyone except Richard E Grant (and possibly David Beckham, if he could just keep quiet. All the time). My elder children are strange and wonderful teenagers with excellent taste in music, endless appetites and filthy bedrooms, and my younger two are just young enough to still be cute, but old enough to pour their own juice. I love my friends, adore my dogs (two dobermanns and two Lancashire Heelers), and I thought everything was humming along nicely, thank you. Well, it was obviously too quiet for some great cosmic plan.
Back to the saga. Obviously, the letter that the hospital had assured my GP was in the post - wasn't. I ended up phoning the clinic yet again on the Wednesday to confirm the time/destination of my appointment (and reassure myself that they actually did have me on the system).
Drove by myself to the appointment (it's only a cyst, and don't really want my OH sitting outside whilst my boobs are squeezed in a clamp and x-rayed. Saw the registrar, who took one look, then scribbled on a form and told me to go to radiography. Just up the corridor, turn left.
I cannot fault how quick and sympathetic the staff were, even if the lady doing the mammogram commented on how uneven my breasts are (lefty has always been a good cup size bigger than righty). It was actually the first time a medical professional had seemed surprised by the difference in size since I had a medical at boarding school by a male doctor who was surely past retirement age. Didn't see him again during my two years there, but then neither did any of the other girls. I think he just came in to have a quick grope, then disappeared until the following September.
The mammogram was.. interesting. Not as uncomfortable as I'd been led to believe, but certainly an unusual experience. I had no idea my boobs could go that flat. Or that wide. I did have a moment whilst balancing on one leg with my arm looped over the top of the machine when I wondered what would happen if I fell over. Would the machine come with me, or would my breast remain in the machine, clamped forever, whilst I fell writhing to the floor spraying blood around in a scene worthy of Kill Bill? Didn't happen, sorry - so can't actually answer that question.
Then off to ultrasound, where I chatted nonchalantly with the nurse while the (male) radiographer smeared cold jelly across my naked breasts. I couldn't see the screen, but as I couldn't really make out my own babies on u/s, it wasn't like I was going to have any useful input. Then, biopsies. 'We're going to take two biopsies from your breast, and one from your lymph nodes. There will be a strange noise and it sounds like this'. It sounded like a dog clicker, and I thought for a moment I might get a reward, but no, it was just the biopsy flesh remover implement. The breat biopsies were fine - just a bit of pushing around, but then we came onto the Fine Needle Aspiration of my armpit. Sorry. That hurt. I think he was trying to reach my navel through my armpit, and I think he might just have succeeded. All done, wait for the results, and back to the breast clinic.
The breast clinic was pretty much closed by the time I got back there, so I was straight through to be seen, as I think we were all desperate to go home by this point. In retrospect, maybe I should have gone home first.. as the next few minutes were not good.
It's breast cancer.
Back to the saga. Obviously, the letter that the hospital had assured my GP was in the post - wasn't. I ended up phoning the clinic yet again on the Wednesday to confirm the time/destination of my appointment (and reassure myself that they actually did have me on the system).
Drove by myself to the appointment (it's only a cyst, and don't really want my OH sitting outside whilst my boobs are squeezed in a clamp and x-rayed. Saw the registrar, who took one look, then scribbled on a form and told me to go to radiography. Just up the corridor, turn left.
I cannot fault how quick and sympathetic the staff were, even if the lady doing the mammogram commented on how uneven my breasts are (lefty has always been a good cup size bigger than righty). It was actually the first time a medical professional had seemed surprised by the difference in size since I had a medical at boarding school by a male doctor who was surely past retirement age. Didn't see him again during my two years there, but then neither did any of the other girls. I think he just came in to have a quick grope, then disappeared until the following September.
The mammogram was.. interesting. Not as uncomfortable as I'd been led to believe, but certainly an unusual experience. I had no idea my boobs could go that flat. Or that wide. I did have a moment whilst balancing on one leg with my arm looped over the top of the machine when I wondered what would happen if I fell over. Would the machine come with me, or would my breast remain in the machine, clamped forever, whilst I fell writhing to the floor spraying blood around in a scene worthy of Kill Bill? Didn't happen, sorry - so can't actually answer that question.
Then off to ultrasound, where I chatted nonchalantly with the nurse while the (male) radiographer smeared cold jelly across my naked breasts. I couldn't see the screen, but as I couldn't really make out my own babies on u/s, it wasn't like I was going to have any useful input. Then, biopsies. 'We're going to take two biopsies from your breast, and one from your lymph nodes. There will be a strange noise and it sounds like this'. It sounded like a dog clicker, and I thought for a moment I might get a reward, but no, it was just the biopsy flesh remover implement. The breat biopsies were fine - just a bit of pushing around, but then we came onto the Fine Needle Aspiration of my armpit. Sorry. That hurt. I think he was trying to reach my navel through my armpit, and I think he might just have succeeded. All done, wait for the results, and back to the breast clinic.
The breast clinic was pretty much closed by the time I got back there, so I was straight through to be seen, as I think we were all desperate to go home by this point. In retrospect, maybe I should have gone home first.. as the next few minutes were not good.
It's breast cancer.
Waiting (Part One of many, I fear)
The next 24 hours were, I naively thought, amongst the longest of my life. Not quite as long as the last hour of giving birth, or ratching the clock between painkillers after having my wisdom teeth dug out.. but definitely up there with the 'waiting for the driving test examiner'. Still, time passed. No phone call. I checked the ansaphone obsessively, just in case the phone had mysteriously rung on silent/whilst I was in the loo/shower/staring blankly at the telly.
I gave in and rang my surgery 48 hours after the first appointment. The receptionist gave me the number to call, which I did - it put me straight through to the main reception at the hospital. I explained why I was calling, and was transferred to the rapid referral clinic. Then on to someone else, who assured me my paperwork was there, and I would get a phone call before 4pm the next day (Thursday).
At 4.02pm the next day, I rang back. Lovely lady, answered the phone 'appointments', and then told me that she could find no trace of my paperwork, but on hearing the hysteria creeping in to my voice, soothingly told me that she would make me an appointment there and then.. the first one available. Thursday next week. Ok, thank you, and I hung up. Then realised that I wasn't even sure that I'd been through to the right person - having been passed around from department to department, given different numbers to ring.. what if I'd just made an ante-natal appointment?? I rang my doctor's surgery again...
The next morning, my doctor rang me to reassure this (by now incredibly irritating and neurotic) woman that I had indeed made an appointment with the breast clinic, and a confirmation letter would be in the post.
I gave in and rang my surgery 48 hours after the first appointment. The receptionist gave me the number to call, which I did - it put me straight through to the main reception at the hospital. I explained why I was calling, and was transferred to the rapid referral clinic. Then on to someone else, who assured me my paperwork was there, and I would get a phone call before 4pm the next day (Thursday).
At 4.02pm the next day, I rang back. Lovely lady, answered the phone 'appointments', and then told me that she could find no trace of my paperwork, but on hearing the hysteria creeping in to my voice, soothingly told me that she would make me an appointment there and then.. the first one available. Thursday next week. Ok, thank you, and I hung up. Then realised that I wasn't even sure that I'd been through to the right person - having been passed around from department to department, given different numbers to ring.. what if I'd just made an ante-natal appointment?? I rang my doctor's surgery again...
The next morning, my doctor rang me to reassure this (by now incredibly irritating and neurotic) woman that I had indeed made an appointment with the breast clinic, and a confirmation letter would be in the post.
So how did I get here?
A little over a month ago, my biggest concern was whether or not to sell my little Smart Roadster, and get us a second car that was more useful as a family car. One that would fit a dobermann or two in it would be a start. But I LOVE my little Roadster. Then the world as I knew it was turned upside down...
I found a lump in my left breast. Just woke up one morning, and there it was - glaring at me. I gave it a quick prod, yes, definitely a lump and not some mutant mosquito bite. Hmmm. So, I did the sensible thing and rang my doctor's surgery. Could I have an appointment with a female doctor? Sorry - we don't have one of those next week. Ok, a male doctor then? Nope, not got an appointment there either. You can phone the duty doctor in the morning...
Or not. If the surgery line is constantly engaged... I tried again at lunchtime (work still goes on for us mere mortals, lump or no lump, and besides.. it's only a cyst, right?). Engaged.. All afternoon.. engaged. That took me to Friday evening. I'll phone again on Monday, just forget about it over the weekend. Bound to be a cyst, came out of nowhere, it'll probably pop and disappear..
Still there on Monday, and this time I managed to get through, made an emergency appointment to see the duty doctor and duly trotted off into town. Sat on the examination couch with my top off and contorted my arms into weird and wonderful positions, as directed, then lay back on the couch.. and ping - as my saggy old boob, sadly worn out from breastfeeding and a combination of age and dieting, headed south down my ribcage - the lump appeared. Sharp intake of breath from the doctor - 'Fine, you may get dressed now'. Two minutes later, and he's emailing a rapid referral request off to the hospital.. Apparently I should hear from them within 24 hours or so, and hopefully be seen at the clinic later in the week.
(But it's still a cyst, right?)
I found a lump in my left breast. Just woke up one morning, and there it was - glaring at me. I gave it a quick prod, yes, definitely a lump and not some mutant mosquito bite. Hmmm. So, I did the sensible thing and rang my doctor's surgery. Could I have an appointment with a female doctor? Sorry - we don't have one of those next week. Ok, a male doctor then? Nope, not got an appointment there either. You can phone the duty doctor in the morning...
Or not. If the surgery line is constantly engaged... I tried again at lunchtime (work still goes on for us mere mortals, lump or no lump, and besides.. it's only a cyst, right?). Engaged.. All afternoon.. engaged. That took me to Friday evening. I'll phone again on Monday, just forget about it over the weekend. Bound to be a cyst, came out of nowhere, it'll probably pop and disappear..
Still there on Monday, and this time I managed to get through, made an emergency appointment to see the duty doctor and duly trotted off into town. Sat on the examination couch with my top off and contorted my arms into weird and wonderful positions, as directed, then lay back on the couch.. and ping - as my saggy old boob, sadly worn out from breastfeeding and a combination of age and dieting, headed south down my ribcage - the lump appeared. Sharp intake of breath from the doctor - 'Fine, you may get dressed now'. Two minutes later, and he's emailing a rapid referral request off to the hospital.. Apparently I should hear from them within 24 hours or so, and hopefully be seen at the clinic later in the week.
(But it's still a cyst, right?)
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