Tired

Ok, so I'm tired, and have probably pushed myself a little too far this week, but I also feel better for it too.  This cycle has followed much the same pattern as the last ......ten days of feeling pretty horrendous, then a few days of getting gradually better then, I'm hoping that the next week will be a 'feeling normal' week.

Adrian and I are off to Plymouth for the weekend while Grandma and Grandpa babysit (thank you Susan and Graham).  The plan was to get some jobs done on the boat but I imagine Adrian will be getting some jobs done and I might just be reading on my new kindle (Dave Kendrick if you are reading this, I am reading 'Reef'...so far so good ;-) will be sure to review it when I'm finished).  As much as I adore my children it will be pretty fantastic just to be able to get up and make my own breakfast and not have to sort out two little people first.  Some rest and relaxation is in order.

First I have a CT scan first thing tomorrow morning, then my lovely Bransgore Tiny Talk toddler class, then we're off and shoud be on the boat by dinner time :-)

Busy day!

I've had a VERY busy day.....

Starting with Isla deciding my hair needed washed this morning!!

I then had a lovely Tiny Talk class with lots of happy, smiley babies, always a good start to the day :-)

I then went for my first ever accupuncture session....it was more painful than I thought it would be, especially as the points she used were in my wrists and ankles.  But it was only painful for a second when the needle was pushed in.  Accupuncture has been shown (in actual clinical trials.....you know how much I love my science and a good research study!) to be effective, mainly for treating pain.  It is also believed effective in treating nausea and fatigue.  While I was pregnant with Isla I had reflexology to try to combat morning sickness, it didn't do much for the sickness but did make a huge difference to the water retention in my legs that I had suffered with in both pregnancies.  I always said if I was ever pregnant again I wold try accupuncture for morning sickness so I thought I would give it a go for chemo sickness.  I'll have another session before my next chemo a week on Friday, fingers crossed it makes a difference.  I have also been having Reiki from some lovely friends and I'm sure it has been helping my digestive system....my tummy likes to make lots of funny noises whilst having it :-)

After accupuncture I went to Dorset Cancer Centre in Poole for a 'look good, feel better' session!  This is run by a charity and uses volunteer ladies from the beauty industry to basically pamper you, show you how to apply make up properly and draw on eyebrows etc!!!  It was quite fun and relaxing and you get a huge bag of products to take away, all donated by companies.  It's all really good stuff for sensitive skin...and a bottle of benefit perfume which smells delicious!

Here is me after being 'made up' ....I was expecting it to look a bit over the top but the lady was actually quite good and was very subtle with the 'look'

More tears of love....

After a weekend of feeling 'not so great' (apart from a lovely trip to see friends and their adorable baby, Fergus :-)), I am left feeling very much recharged today, after my two lovely Tiny Talk classes.  Not only did they lift my spirits but I was presented with a gift from all my Tiny Talkers.  I had a busy time after class, collecting Isla from nursery and then taking her to ballet, then had to go straight to hospital for my mid chemo blood test.  So, I didn't get a chance to open my present properly until I got home later. 

Well, what an exciting present, a box full of different shapes and sizes of parcels....Isla enjoyed opening them with me :-)  And here come the tears.......I LOVE absolutely everything and was overcome with the absolute kindness and generosity of everyone who has contributed and the thoughtfulness of those who organised it and chose the items.  I was totally in tears and just feeling very, very loved.  

I really cannot thank you all enough, it is just the loveliest present I have ever received.  I sit here writing this wearing the lovely snuggly Sea Salt socks (one of my favourite brands), I already know what I'm going to get at White stuff with the gift voucher (another one of my favourite brands)....I spotted a dress a few weeks ago I love and I also need some new slippers for going into hospital when I have surgery.  I am looking forward to having a lovely massage and probably some reflexology with the 'pampering' money.  I love Burts Bees stuff and the top to toe set is the perfect thing as the drug I change to after Christmas may make my nails all horrid and fall off (I know....just when you thought it couldn't get any worse!!!)...so they recommend lots of moisturiser day and night to keep nails strong.  Then I opened the parcel with the case for the kindle.....that's a bit strange I thought as I don't have a kindle...but there was one more parcel.....no way....they didn't get me a kindle!!!  WOW!  So exciting, THANK YOU!  I love it and it will be so useful to keep in my bag and have something to read while waiting for appointments and killing time in hospitals.  You are all amazing and have just made me feel so so special and loved over the past few weeks. 

So, more happy tears for me today, I like those kind.
xxx

An afternoon in A and E but all ok

Well, an eventful day.  Woke up feeling really rubbish......AGAIN....well, not so much woke up as got out of bed at 7ish after hours of laying around trying to sleep!  Have pain all around chest, neck, ear and pains in left eye.  Walked Abi to school, felt exhausted and dizzy and just not quite right.  Eventually my long suffering, ever exasperated by me mother MADE me call into the chemo ward to report that I was still not well.  I didn't think they would be too bothered as my temp wasn't up at all (I need to keep a close eye on that as if I get any infections while my blood count is low it can be serious).  The ward quickly called me back to tell me to get my butt to A and E for a heart trace.......eh?  what? but there is nothing wrong with my heart I said.  Well, apparently due to the fact I have pain in my left jaw, ear and eye, that could be referred pain from the heart!!!  WOW, oh, great I thought, I do feel dizzy and kinda funny, heck, please don't let this horrible poison have damaged my heart!

Anyway, long story short - went to A and E for an ECG, was triaged really quickly and had blood tests done.  ECG fine but had to wait for blood tests.  One test had to be repeated ...then there was a change of shift and it went down hill from there - obviously miscommunication but three hours later and nobody seemed to even be aware we were waiting for blood results!  AAAAGGGGGHHH.  Meanwhile my poor, suffering friend Sarah has had to suffer my two littlies as well as her own at a school Christmas fair of all things.....Thank you Sarah!!!

So, all ok now, I feel better.  I have to take antibiotics again (for no apparent reason, it just seems they like to give it to you 'just in case' if you complain about any symptoms at all).  But I am just SOOOOOOOO happy that all is well with my heart :-)

Emerging

I think I am finally emerging from the hideous of chemo number two.  I've definitely been more knocked out this time and the nausea has somehow been harder to deal with......perhaps it's the thought of going through it all our more times.  BUT, I have to turn it on its head and say two down now, only four to go........hmmm not quite convincing myself yet, perhaps it will be easier after next one, then it will be half way through.

Once again, I have to thank the amazing people in my life this week for helping me through. Even messages to say people are thinking of me is such a pick up. Thanks to those that have helped with the kids and the amazing people making us dinner every night :-)

Right, can anyone help me......my head is freezing all the time, I hate wearing tight fitting hats all the time but my wooly beret/ slouchy hats are too hot and scratchy to wear indoors.  I really want a beret/ slouchy loose fitting hat that is made from something soft like bamboo wool or cotton.  If anyone knows anything like this please let me know, or if you know a supper fast knitter I have some bamboo wool I can send them :-)

Egg head!

I am now officially an egg head, got fed up eating hair off my pillow so had Adrian shave my head!

Little bit pasty white and its very cold but feel better without it shedding everywhere.

Forgot to tell you about the good (ish) news from Friday....I finally got my receptor info.  The cancer is strongly Er (oestrogen) positive which means I will be eligible for hormone therapy after surgery to reduce risk of recurrence and secondaries.  I was so convinced I would be triple negative which there is no current treatment for, so this is a relief.  The downside is I'll be taking a medication for at least 5 years that will give me menopausal symptoms!  So watch out world for my mood swings!

This also gives me more dilemma regarding surgery, I was pretty much decided if I was triple neg I would push for bilateral mastectomy but now there is more scope to keep my good breast intact which is better I guess.  I'll have a meeting with surgeon in December sometime but want to be sure of what way I want to go before then.

Irene, I have done my ankle turns today and walked up and down the stairs several times and had a bath so I think that ticks my exercise for the day :-)

Chemo two done and dusted

Hello, thanks you for all your messages of support for my second round of Chemo.  All did not go quite to plan by we got there in the end, I survived and I am feeling reasonable today.

Unfortunately the blood test I had on Thursday for pre-chemo was too low : white blood count of 0.8 and they wont do chemo unless its over 1 (normal range is 2 -7 for white cells or 4 -11 for neutrophils, not entirely sure which they were focusing on).  So when I arrived yesterday I had to have another blood test and then wait an hour for the results.  Due to the huge cost of the drugs, they are made up specifically for each patient so they hadn't made my drugs up just incase the blood count was too low.  Luckily my bloods were up to 1.3 so I could go ahead, but then had to wait longer for the drugs to be made.  Due to this complication with my blood count, I now have to self inject a drug for five days each cycle to stimulate my bone marrow - this apparently causes pain in the large bones (oh joy!).  I'm not too keen on this, obviously, but they don't want to risk the chemo being delayed at all since I am still pre surgery as any delay puts surgery back and we need to get this bad boy out of my body!

So after arriving at 1.30, I finally started having chemo just before 4.  Thought I would treat you all to a pic of the amazing pink drug - epirubicin, this is the evil one that causes the sickness and hair loss.  I have two full syringes of this, one of a clear drug and then a little bag through a drip of the final one (the one that makes my nose burn!).  It's all pretty painless, I get given 4 steroids at the same time so I am pretty bouncing off the walls for 4 hours afterwards until the sickness hits.

I had a different anti sickness drug this time but unfortunately it didn't stop the sickness and I still vomitted most of the night, however it wasn't quite as bad as last time and we were able to control it at home with injections and drugs so, thankfully, I avoided an admission to hospital :-)  I was able to then sleep for a bit and although I still feel very sick today I am sitting up and able to write this, so that is a lot better than I was last time.  Fingers crossed, although the injections wont be nice, they might help me feel better that second week when I had a dip, probably due to low blood count.  Just have to wait and see.

So this is me today, almost bald now but I don't mind, it's just a little chilly!

I have to say, once again, a huge thank you to all the amazing people in my life.  I've had cards, flowers, loads of well wishing messages, mysterious gifts (please let me know who it was - it was from a local postcode).  I'm having meals delivered all this week which is such a help and takes so much strain off Adrian, and we are getting so much help with the children too.  You are all just wonderful and I don't know how I am going to repay all this kindness (but I am formulating a plan ;-))

Lots of love to you all, as you can hopefully see, I am doing OK.
xxxxxxx

And ready for round two.....

Pre-chemo today before session two tomorrow afternoon.  Pre-chemo just involves a blood test and then meeting with an oncologist to discuss side effects etc.  They are going to give me a different anti sickness drug this time along with the one I had last time, plus the steroids, plus another anti nausea!  Fingers crossed it all works a bit better.  Also getting more mouth rinse stuff to treat the grim peeling mouth which is apparently called mucositis.

Making the most of feeling well today - went for that run that I planned yesterday but never got around to.  It was cold but sunny so perfect running weather and it made me feel great.  I'm probably overdoing it but off to yoga in a minute too - need to cram it all in while I feel well!!

Must go or I'll be late for Yoga.

Hair update - it's on it's very last legs, as Abi said, I look like a baby - patchy tufts of wispy hair.  Can't wait for it to be gone now and stop falling all over the computer keyboard and in my food!!

If there's a radio silence for a few days you'll know why.......see you on the other side. xxx

Life as normal

So, I've done two days back at work and I'm shattered but really enjoyed it.  It was lovely to see my Tiny Talk babies and Toddlers and they have all grown so much in the last three weeks.  I have one more class tomorrow and then one on Friday just before next chemo!  It's good to be back to normal life though, even if just briefly.  I'm still feeling good but my poor scalp is suffering, I can't wait to get rid of the last bit of hair.  Wearing hats/scarves all day is really annoying and uncomfortable, I'm hoping that it will be better once all the hair is gone.  I'm used to having such thick hair so my head feels really cold when I have nothing on at home!

Yesterday I received a mysterious gift in the post - in a box but with no card to say who it's from.  Lovely little treats like hot chocolate and biscuits inside.....thank you to whoever the gift giver is, I'm not sure if it was intentionally anonymous but I would love to know who you are so I can thank you properly :-)

Irene - my exercise task master....I have done plenty of exercise yesterday and today with lugging boxes around for my classes.  Tomorrow my goal is to fit in a short run in the afternoon and Thursday night is Yoga....then it's chemo time again, so I might just be back to the ankle circles for a few days ;-)  I'll keep you posted though. x

Glorious weekend

Sorry for the radio silence, I have been enjoying feeling well and 100% normal for a few days.  Other than the hideousness of my hair coming out in handfuls all over the place I have totally forgotten about the fact I am 'ill'.  Lets get the hair thing out the way first - it is horrible, and painful, I didn't expect that.  I think its when the hair is loose in the follicles so it irritates and pokes the scalp. Then there is the fact it gets everywhere, blocks the sink, gets in and on your clothes.  I've had to wear hat's all weekend as it is just shedding everywhere.  By this morning I had serious bald spots on top and now have very little hair left.  I'm tempted to shave it but then apparently the little short spiky bits are even more uncomfortable when they end up down your back!  Here is a photo of my baldy head....a few more days and it will be all gone and hopefully feel a bit better.  I hate wearing something on my head all the time though, so may just embrace baldness at some point when I'm feeling braver :-)

So on to a more pleasant subject - the boat.  Yes, we did make it to Plymouth and yes, the boat did get launched :-)  We had a glorious weekend.  It did rain but we had a lot of sunshine too and had lots of fun on the boat and in Plymouth.  We took Black Pearl down the river (about a 2 hour trip) to Plymouth Harbour where she will stay for the winter.  Its a 3 hour drive for us to get there so we are hoping to spend many weekends there over the winter sprucing her up and get her ready for some serious sailing next summer.  As promised here are some pictures.  Both the girls loved the boat, particularly their own little bunks.  Abi wasn't to keen on the damp and cold initially but once we got it all warmed up she really got into it and loved cleaning her up (long may that last!).

The bare bear with no hair

And so it begins - hair coming out this morning, glad I didn't wash may hair or it might have been a shock, even though I knew it was coming!  Did you know you lose hair from ALL OVER your body...everywhere, including the little hairs up your nose (which results in a constantly runny nose) and the hair inside your ears!  Apparently underarm and leg hair is typically the last to go....of course, the hair you really don't want hangs on longest!!  Luckily the kids are totally fine about it - well Abi is anyway - a couple of weeks ago on the way to school I commented that the trees were all losing their leaves and soon they would be bare.  Abi's retort.....'ha, Mummy, just like you, all bare, that reminds me of the story of the bare bare with no hair'  Gotta love kids :-)

I'm feeling reasonably well just crazy tired, but still not sleeping well so no surprise. I have decided to go back to work and do most of my classes next week before the next hit of chemo next Friday (can't believe it is next week again already).  I am sure I will feel better being active and taking my mind off things.

My head is getting all messed up with statistics, outcomes, survival rates, surgical options etc, etc.  It's a lot of information to learn.  Initially I was very much of the opinion I would just focus on getting through this part, the chemo and worry about the rest later.  However, I will have to make decisions about surgery fairly soon and I want to make sure I know EVERYTHING before then.  That's just me, I need to know and understand everything, I know some people would rather not know and take the lead from professionals.  But I want to know that I am doing everything I possibly can to have the best chance of living for as long as I possibly can.  I still haven't heard anything about 'receptor status' and that is playing on my mind. 

Are you ready for the science bit?  I've had lots of people tell me they find it interesting so I feel vindicated to continue, but as I've said before, feel free to skip it :-)

Receptors are like key holes on the surface of cells.  Agonists are molecules that bind to the receptor (like a key in the lock) and activate it to do something - often make a protein.  You can also get Antagonists that bind to the receptor and block it from activating.  If you did biology at secondary school, this is hopefully a familiar concept.  So, research has found that some breast cancers have receptors for certain proteins or hormones and these are thought to stimulate the growth of the cancer.  The most common one is for the hormone Oestrogen.  This is why they think people are at higher risk of BC if they have taken the Pill for a long time, started periods at an early age, menopause at a later age, never had children and never breastfed - all these things lead to an increased exposure to Oestrogen across a lifespan.  The other female hormone, Progesterone, is the other main hormone receptor found in BC.  And finally a protein called HER-2 is found in high levels in some BC's, this is a growth factor and is caused by a muted gene in the cancer cells that results in over production of this protein that in turn stimulates growth.  This is what I understand of it all, my science may well be flawed, its been 15 years since I studied biochemistry, so please don't quote me ;-)

There are various long term treatments that are taken if you have a BC that is positive for these three key things.  You may have heard of a drug called Tamoxifen - this is something that is taken long term (usually for 5 or 10 years) to block the Oestrogen in your body if you have an Oestrogen positive BC.  The idea being that this will then reduce the risk of recurrence or secondary cancers developing.  Similarly there are drugs for Progesterone positive and a drug to block production of HER-2.

Sometimes, more frequently in younger people with a BC diagnosis, the cancer is called 'Triple Negative' and in this case none of these receptors are found and nobody knows what is stimulating the cancer.  There are no back up treatments in this case, but this type does respond more positively to chemotherapy.

So there you go, more than you ever wanted to know about Breast Cancer huh?  Yeah, me too!

Enough of all that now, I am determined to put it away in a box and forget about it all for the weekend.  We are off to Plymouth tonight :-)  The boat is being launched at 8am tomorrow.  We have lots of cleaning to do on her - she is no doubt pretty mouldy and smelly as she has had a leaky hatch, bless her!  But we'll spruce her up then on Saturday we have an 8 mile journey down the Plymouth sound to take her to her home for the winter in a marina in the centre of Plymouth.  Here is a preview of Black Pearl.  I'll post loads more photos next week.

Blood, blood, blood...

Felt rubbish all day yesterday, It turns out it's hard to write a blog when you are feeling rubbish.  I really don't want to write about being tired, sick, fed up etc etc.  Yesterday consisted of hospital for blood test with two children (I have to say both of them where spectacularly well behaved), dropping large bowl of soup in a glass dish on the slate floor and making a horrible mess, Isla weeing on the hall landing, suffering through Isla's ballet lesson where she refused point blank to participate (She thoroughly enjoyed the taster session at the start of term, then after paying for the entire term, she decided she didn't want to do it!).  Then on returning home I had a call from the chemo ward to say that my blood results were back and the white count was too low so I have to take antibiotics just in case.  Lovely, just what I need, side effects from antibiotics!  So all in all, not a great day!  But today is a new day, I had the best sleep I've had for a week (though still not very much) and I feel a lot better than I did yesterday, just need to be careful not to pick up any bugs and hopefully things should improve from now on (well until a week Friday when it's round 2).

So, are you ready for the Science bit?  Chemotherapy drugs attack rapidly dividing cells (as this is basically what cancer is...cells that have mutated and started to divide out of control).  However, we have lots of good rapidly dividing cells in our bodies - primarily our skin, which is constantly renewing itself - that's our outer skin, and the skin lining the inner parts of various areas of our body.  Also hair follicles and nail beds consist of rapidly dividing cells.  As well as skin, our blood cells, produced in bone marrow, are rapidly reproducing all the time.  All of these 'good' cells are also attacked by chemotherapy drugs.  This is why I have a three week cycle...to allow the good cells to recover and regenerate before the next hit.  So at the moment I am at the lowest blood count point (between day 10 and 14 post chemo, this varies depending on the chemo drug), I have to have a blood test on day 10 each cycle to make sure my red and white blood count is not too low.  Unfortunately this time it was.  A low white blood count means you have very little immunity so I could pick up infections really easily.  My blood count should start to increase each day now though.

One of the grim side effects so far (you asked for it Sarah Hogg!)  is that the inside of my mouth peeled.  I guess it's again, due to the rapidly dividing skin cells being attacked.  This spread to what I assume was the whole of my oesophagus which resulted in a burning sensation every time I ate or drank.  I also felt like I was constantly swallowing skin for a few days!  Luckily this seems to be over now, I was worried it was going to be a permanent feature - but my mouth seems to have mostly recovered.  This may happen each cycle, who knows.

Riding the Storm

Well, I'm still doing OK.  Its been a rough few days with very little sleep and various grim side effects that I won't go into detail about just now - but may well gross you out with at a later date :-)  Hit a bit of a brick wall yesterday, think it was probably because it was the first day off steroids so had a bit of a lull but feel brighter this morning.  Still don't feel 'normal' and have a very fuzzy head but think it's time to accept that it's not normal and I probably won't feel normal for a few months now.  Time to adjust my perspective and expectations and get up and carry on.....I'm definitely in a mind over matter mood today :-)

Have been very well looked after over the last few days by my amazing Friend, Liz.  She is ensuring my nutritional needs are met - both the cravings for terrible things like mac and cheese, and the actual real need for nutrients.  Liz and I have been juicing for well over a year now and LOVE our green breakfast juices, unfortunately I can't stand it now :-(  But after researching the best foods for blood count (both red and white) we have come upon the best juice for me just now, and I love it, so it's perfect.  ABC : one apple, two beetroot, three carrots.  Simple and perfect :-)  Liz also made me amazing watercress and spinach soup - both foods to boost red blood count. 

While up in the middle of the night last night surfing the web ( as I've been doing for the past three nights!) I came across this quotation and it just feels right for me just now........

Hopefully no storms next weekend though because, fingers crossed, we are going to finally launch Black Pearl (just when all the sensible people in the world are taking their boats out of the water for the winter!)

The love and generosity of friends and strangers

The world is full of truly amazing, kind, generous and just downright beautiful people.  Today I was honoured to see this in abundance.

I am very lucky to have an amazing job teaching Tiny Talk baby signing classes and toddler classes ( I'll tell you a bit more about them another time). This term I have been running 7 classes to almost 70 families across the new forest area.  I have always felt privileged to be in a job where I get to watch babies grow, develop, and most importantly learn to communicate and exert their will on the world, it's amazing.  I also get to hang out and chat loads with lovely parents and make great
friends.....doesn't really sound like a real job, does it?!  I was gutted to have to cancel my classes temporarily while starting treatment but from the day I sent out an email to all my families I have received an abundance of  messages of love, support, understanding, all just wanting me to get better.  I have been truly overwhelmed by the love I have been shown by people, some of whome have only known me for a very short time.  I don't think I quite realised the impact I have in other people's lives and the fact that people care so profoundly about me, I have a whole new appreciation of just what a special and privialliaged job I have.

So coming back to today, a group of my Tiny Talkers who I have known for years now decided to hold a coffee morning to raise money for Breast Cancer Research, such a lovely idea.  I can't quite believe how quickly Beth and Vicky pulled it all together, basically in the space of just over a week.  Supported by countless other Tiny Talk families old and new of course.  I know I missed some of you today as I was only there briefly but I was so touched you came and it was so lovely to see those of you I did.

However, the wonder of the day doesn't stop there.  This whole event was held in Bransgore, where I live.  And this lovely village showed what a wonderful comminity it is by supporting this event.  My
lovely, lovely friends who gave their time to help and made LOADS of amazing cakes.  People
donated the most amazing prizes for the raffle.   People I don't know well and complete strangers all came to support this event.

Thank you is just not enough.  Making money for a great cause is one thing, but the way you have all made me feel today is truly priceless.  I may have cancer, but right now I feel like the luckiest person alive to know and have the most amazing, beautiful and incredibly kind people in my life.

Big love to you all. Xxx