I Get By…

Wow, where has the time gone since my last post?  You probably haven’t missed me, but if you were the one waiting with baited breath – my sincere apologies!  Look on the bright side though, you have just got yourself into the Guiness Book of Records for holding your breath the longest…

I’ll give you a quick update on what’s been happening with me since November and then get into what I really want to say.  I had been hoping to get this post out before Christmas but ended up in hospital for five days instead with neutropenia (basically that just means that my white blood cells were practically non-existent so couldn’t fight any possible infections and I had a small bug of some sort, although they never found out what exactly).  Luckily I managed to get out before Christmas and was well looked after by my lovely in-laws over the holiday period.  Since then I’ve had two more lots of chemo, my last one (ever I hope!) on Friday of last week.  I’ll be continuing on the Herceptin and Pertuzumab treatment every three weeks until they stop working, and will be having scans to see what the state of play is in the next few weeks (fingers firmly crossed please).  In the meantime, the things I’m looking forward to now are:

• hair growth;
• taste buds;
• less painful, stronger nails;
• more energy

plus a load of other things besides, but I don’t want to sound like a whinge-bag!

Anyway, what I really wanted to talk about on this occasion was about how I cope.  In order to do so, I thought I would use an analogy (I think that’s the right term).  Bear with me; I’m hoping it’ll make sense although it could get a bit poncy in places.

I am a small red wooden rowing boat in the middle of a vast ocean.  (The only significance of the colour is that red is my favourite.)  My paintwork is dry, cracked and peeling in places and I have lost my oars.  It is dark.  Above me, the dark scudding clouds offer the occasional tantalising glimpse of the moon and stars (told you it might get arty-farty).  I am at the mercy of the turbulent sea and waves.  From time to time I catch sight of land, but the tide isn’t conducive to allow me to get close.

At first glance I am utterly alone, but care to look a little closer and you will see that I have some “weapons” at my disposal.  I have a sturdy chain and anchor (my husband, Glenn), who in the stormiest of times drifts along with me but who always quickly finds firmer ground to anchor and stabilise us.  I also have two flotation devices, secured to either side of my boat (my girls, Jade and Anja – I’m sure they will not thank me for this simile) who keep me upright and stop me from sinking under.

If you zoom out a little from this picture, you will see that there are a number of support vessels surrounding my boat from a short distance – my family; my parents, brother and family, sister and family, my parents-in-law; brother-in-law and family – all there to help whenever they are needed.

And up above me are the stars, so many of them…  All my friends; those who I know well and those I have yet to meet.  Just like the stars, I know that you are always there, even if I cannot always see you!

Of course, there are others in the picture too – the “professionals” – my oncology consultant and all the nursing team; my MacMillan nurse (first Claire, now Sharon); all the volunteers who keep everyone going with hot drinks and smiles in the chemo unit; and all the staff at Keech Palliative Care Centre in Luton.

So with this “army” of support surrounding me, how can I not cope?

Thank you all for your love, support, friendship, craziness, loyalty, gifts, thoughts and prayers.  You are truly one in a million (all of you), and I am one lucky girl!

Hair Today, Gone Tomorrow

If you ask just about any woman undergoing chemotherapy treatment for cancer what the worse thing is or could be, the majority of them will say it is to lose their hair.  I’ve known some women refuse treatment because of that fact alone.  There is something about losing our hair which makes the cancer visible.  It is difficult to hide the fact, although wigs are so much better than they used to be, even a few years ago.  If we’ve had surgery, we can hide under our clothes; if we aren’t feeling 100%, we can hide behind make up, but it is so much harder to hide hair loss; on our heads and our facial hair.

As I indicated in my last blog, I experienced major hair loss shortly after my last treatment and after a week of umming and aahing about what to do and feeling very self-conscious, I decided I would stop the torture that is the cold cap treatment and let the chemo treatment take its course, which will, in all likelihood, mean losing all the hair on my head.  My lovely friend and hairdresser Gemma (currently on maternity leave), very kindly agreed to cut my hair short which was a major deal – I’ve not had short hair since I was about 14 years old – but she’s done a fantastic job and thank you to all you wonderful people who’ve given me such fantastic comments about my new “do”.  (And I didn’t cry – a major achievement!)   I’ve also now picked out a wig, so I’m all set for when I do lose my tresses.

I’ve had a third treatment since my last blog too, so I’m now halfway through (YES!) and still feeling relatively okay.  I tend to feel very tired and rather fuzzy-headed, particularly during the first week after treatment, and of course I’m still experiencing the numb tongue (which is getting right on my wick now)!  Treatment wasn’t quite so long this time round as I ditched the cold cap.  If you have the cold cap treatment you need to put it on half an hour before the chemo, keep it on throughout the chemo (in my case, an hour) and then have it on for a further 45 minutes after.  The entire time your head feels like you have the worse brain freeze EVER and it can (and did) make you feel very nauseous.  So now you know why that didn’t seem a very appealing prospect to continue.  Hats off (very carefully of course, so as not to lose any hair), to all those ladies who choose to continue with the cold cap.  I salute you; you are the epitome of bravery in my eyes!

A word about bravery…  I’ve had some really lovely comments about my blog and many describe me as “brave”.  I don’t feel brave at all.  Bravery to me is when you have a choice and you decide to go through with something.  I don’t have a choice!  I believe that my oncologist has my very best interest at heart and therefore when she suggests a particular treatment that is the one that will benefit me the most.  It is not through choice that I (and so many others) are going through the rigours of cancer.  So please, don’t call me brave – I am many things… stubborn, determined, bloody-minded, pig-headed (I’ve just realised where my youngest is getting it all from!), but definitely not brave!

As a way of combating the visible effects of cancer, today I had a lovely treat; albeit at the hospital…  A charity organisation called Look Good, Feel Better run beauty workshops for women undergoing cancer treatment all over the country.  Ten gorgeous ladies were brought together and given a hands-on beauty therapy session with a staggering amount of products for each of us donated by the cosmetics industry, alongside beauty therapists who generously give their time for free.  All in an effort to boost our confidence and feel empowered.  We went through a whole routine, from cleansing and toning to applying full make up, and I for one left walking that little bit taller with more belief and self-assurance.  Perhaps if you get a chance, you could look up their website, www.lookgoodfeelbetter.co.uk and find out what it’s all about.  None of us want to be seen as a victim, and make up can really act as a great coat of armour in our battle for normality.

“May you find the strength to face tomorrow
in the love that surrounds you today”

 

Take care all! xx

A Bit More Me

So, I have a confession to make…  I haven’t given you the full facts.  Not because I wanted to mislead you in any way, but I guess I didn’t want my first blog to sound too much like a “pity-fest”.  But I think I should tell you all, so that you understand.

Before my diagnosis of metastatic breast cancer, when I just had a bad back, I also had a very painful right leg along with some weakness.  If you’ve ever had growing pains when you were young, think of that annoying pain but triple it.  At the time of course, I just thought it was as a result of the bad back but shortly after my spinal surgery I had a bone scan to determine the extent of the cancer spread.  This showed that my right femur was significantly compromised; so much so that I was immediately given crutches as any weight on the leg might result in the bone breaking.  So only five weeks after major spinal surgery, I was back under the knife; this time to have my right femur pinned.  (Think of me more as Metal Mickey than bionic woman though.)  Luckily, as you already know, it was successful and after several months of rehab I was able to get back on my dancing feet once more.

The other blip came at the end of last year, when I mentioned that a small lump in my neck (which scans had shown up before and they were just keeping an eye on) seemed to be getting larger.  Although I was told that it was highly unlikely to be connected, an ultrasound was ordered and a biopsy done.  They were right, it wasn’t part of the metastatic cancer, but it was thyroid cancer – just another primary cancer (how lucky can one girl get, right?).  So, when I say “trust your gut instinct”, I really DO know what I’m talking about!

So, where are we now?

I have metal in my spine, metal in my leg, I am minus a thyroid, minus two ovaries and fallopian tubes, and the cancer has become resistant to the hormone treatment which has controlled it over the last two years.

Onwards and upwards onto a new treatment regime.  This time the dreaded chemotherapy!  I’ve been put on a lovely little cocktail of something called Docetaxel, six cycles (one every three weeks) alongside two targeted therapies, Herceptin and Pertuzumab which work on the HER2 protein, and which will continue for as long as they work (fingers crossed we are talking years here…) All these are given as an infusion through the vein and I’ve been given an implant in my chest to avoid having to cannulate each time – maybe I am more bionic woman now?  So far I have had two cycles (that’s a third of the way along already – hurrah!) and have used the cold cap treatment to stave off hair loss.  Unfortunately, the cold cap doesn’t seem to have been successful (judging by the amount of hair that came out on Sunday).  I have a lot of hair, but even I wouldn’t be able to sustain that amount of loss.

As far as side effects are concerned, I have had relatively few.  (I currently have everything crossed as I say this – fingers, toes, eyes…)  The main side effect I am experiencing seems to be a numb tongue, which halfway through the last cycle did turn into a very painful mouth.  I do, of course, have to be super careful to avoid getting any infections as my immune system is very low (particularly during the first week after treatment).  Having said that, I am still working when I can, and work has been fantastically supportive!

So in the great scheme of things, I am extremely lucky – not to have cancer; that well and truly sucks; but the thing that keeps me going is that it could be so much WORSE!!!  Which I guess is a pretty strange way to look at things, but you know what I mean…

I saw a status today on someone’s Facebook page which resonated for me, so will leave you with this thought:-

“Time is like a river. You cannot touch the same water twice,
because the flow that has passed will never pass again.
Enjoy every moment of your life!”

Till next time.  Take care! xx

Why bother?

Before I start I just want to say a huge heart-felt thanks to you all.  I have been simply overwhelmed and touched by your lovely messages of support and encouragement; your generosity of spirit for taking the time to read, comment and share my story has been truly A-MAZ-ING! Thank you.

So, why bother writing a blog at all?

Well firstly, two friends, totally independent of each other, suggested that writing might prove a useful outlet (except they put it far more eloquently than that), which planted that little seed and got me thinking… Could I?  Would I?  Should I?  Do I actually have anything to say?

Secondly, October is breast cancer awareness month.  It is the month where “pink” is pushed to the fore and it hardly seems conceivable that there is anyone left in the world who is not aware of this horrible disease.  The statistics are appalling!  (I won’t bother quoting them – in case I get it wrong – but if you’re into your stats just find them on a reputable site; I would urge you, however, to have a strong shot of your favourite tipple on standby to get over the shock.)  We all know someone (other than me, of course) who’s been affected by this, and if not directly, we know someone who knows someone, right?

So, what’s your point Heidi?  Well, I think what I’m trying to say is that I’d like to use my story to get a message out there.  We all know how important early detection of cancer can be; how much of a difference it can make to its treatment and ultimate defeat; and yet I hear far too many stories like mine…  Where it has spread; where the fight is that much harder, and the road to recovery so much longer and more difficult!  Where you have to come to terms with “living with cancer” rather than kicking the bastard into touch!

What can you do?  Get to know your bodies intimately!  (I hope that you already do, but if not, it’s NEVER too late to start.)  Know what “normal” is for you.  Check yourself regularly, by look and feel. Trust your gut instinct! Go see your GP when there is something that is not normal for you.  Go back to your GP two weeks later when it hasn’t gone away.  Go back to him/her again when you notice other things that aren’t normal for you (whether you think they’re related or not).  Ask to see a different GP if you feel they’re not taking you seriously.  Make a nuisance of yourself if you have to.  MAKE THEM LISTEN!  It is unfortunate that we need to resort to this kind of behaviour to make ourselves heard sometimes, but that is the way it is.  I’ve had many a conversation with my friend Gwen about how, in an ideal world, cancer would be the first thing to be eliminated, rather than the very last possible cause considered in a long, long, long list!  And yes, I know that very often it turns out not to be cancer (hurray), but sometimes it turns out that it is – despite the fact that the person doesn’t fit in perfectly with the normal set of circumstances.  Because I have news…  CANCER DOESN’T DISCRIMINATE!  CANCER DOESN’T PLAY NICE!!  CANCER DOESN’T FOLLOW THE RULES; it makes its own rules, then goes and breaks those and makes a whole new set!!!

So I urge you; whatever your age, gender (yes, guys can get it too), race, religion, ethnic background, sexual orientation… make today the day you stand up to breast cancer by getting to know your “normal”.   Make today the day we unite in making it that much harder for cancer to win!

Well, well, would you look at that…  I guess I had something to say after all!

I thought it might be useful to include here some of the possible signs and symptoms of breast cancer:-

• a lump in the breast;
• a change in the size or shape of the breast;
• dimpling of the skin or thickening in the breast tissue;
• a nipple that’s turned in (inverted);
• a rash (like eczema) on the nipple;
• discharge from the nipple;
• swelling or a lump in the armpit.

Or, in my case, none of the above!  The area above my right breast and up to the shoulder was hard and painful (I thought possibly from an old dance injury?), and unfortunately when I did seek advice, it was put down to my pectoral muscle being in spasm.  (Chances are that it was already too late by that time, as I developed severe backache shortly after this; a sign, as we now know, that the cancer had spread to my spine.)

Thanks to each and every one of you for taking the time to read.  I hope you continue to join me.

In the meantime…. KEEP CHECKING! [fade in the “Strictly” music]

An afterthought…  Having just re-read the above, I may have come across as being particularly harsh on the medical profession.  Of course there are a huge number of excellent GPs who do a very tough job under extremely difficult time and monetary constraints.  However, there are also some spectacularly awful GPs who think they know it all and don’t listen past the first ten seconds of a patient’s concerns.  So, if you happen to be a GP and you’re reading this, I’m not having “a go”; really I’m not.  You may wish to consider though that when you think you are reassuring someone, it can appear as casual dismissal and flippancy!

The Story So Far…

In 1997, at the age of 27, I discovered a very small lump in my right breast (so small, I wasn’t even sure it was a lump).  Being a pragmatic person, I got it checked out at the doctors, and although she didn’t think it was anything, she referred me on to the hospital as a matter of course.

After several months and tests later, the consensus was to have the lump removed so that I wouldn’t have to worry about it any more.  As it turns out, of course, I did need to worry because it was, that very scary word… CANCER!

But hey, I got lucky.  After a further excision and removal of all the lymph nodes from under my right arm, they found no further evidence of the disease; so after some intensive radiotherapy and a total of five years on Tamoxifen, interspersed with having my daughters (the two most beautiful, intelligent, loving, frustrating, caring, energy-zapping, funny and mischievous shining beacons in my life), the ordeal was over and diminished a little in memory with each passing year.  In short, I got on with my life.

Having said that, I wasn’t naive.  I knew it could return, and I knew what to look out for.  I continued to check myself regularly, had yearly mammograms and for fifteen years that worked out just fine.

So, you will probably appreciate how much of an idiot I felt upon being told that the months (and months, and months) of backache were as a result of a vertebral collapse and spinal cord compression which would need urgent surgery.  Actually, that’s not quite true, because at that time I wasn’t informed why the collapse had happened – not for another full week (can you still sense the exasperation and frustration two years on?) – when I was told it was due to Metastatic Cancer.  BUGGER!

Now, you may know exactly what metastatic cancer is, but back then I didn’t have a clue.  I just thought it was a different type of cancer, and that I would go back to having treatment and beating it, just like last time.

However, it doesn’t work like that…  Metastatic cancer basically means that the primary cancer (in my case, breast cancer) has spread to other organs of the body (again, in my case, the bones) and that, whilst they can treat to control it, it cannot be cured.  DOUBLE-BUGGER and DAMN!!

But, it’s not all bad.  No, really it’s not!  After some gifted and fantastically talented surgeon at Queens Square in London put me back together again (just like Humpty-Dumpty, but hopefully I’m a little less egg-shaped) I have even been able to get back out dancing again on a near-weekly basis.  The cancer’s been controlled by a few hormone treatments and bone-strengthening treatments every four weeks, and I had my ovaries removed (to stop them producing oestrogen).  I have scans every three months to check on progression, and it worked… for nearly two years.

Unfortunately though, just as you think you know where you are, the sneaky bastard goes and changes and mine has become immune or resistant to the hormone treatment.  TRIPLE-BUGGER and DOUBLE-DAMN!!!

So, here we are… pretty much up to date!

If you’re wondering why exactly I’ve decided to start a blog on all this – and you’ve probably gathered by now that this is my first foray into the literary art – guess what we’ll cover in the next thrilling instalment!  Hope you’ll stick with me…

In the meantime – KEEP LIVING! [fade in “Strictly” music]