Life's ups and downs

So much has happened since I last wrote.  Some good, some bad. 

Let's start with the good.

I had my first annual mammogram on Monday at 3.30pm with an appointment at 9.15am on Tuesday to get the results.  Those were honestly the longest 18 hours of my life.  Barely slept, felt sick most of the time and really sweated it.  Thankfully, it was clear.  A small but significant victory.

The other good news is that Dad continues to improve - in health, if not humour - and is proving to be the (not so) perfect patient.  To anyone in a white coat/uniform, he is VERY respectful, listens to all their instructions and follows them.  To anyone else he is grumpy, more informed and makes up his own rules.  Wouldn't have him any other way.  Although, as the master of some of the worst puns in history I would like him to laugh just once at one of mine.  Once would do it.  Just once.  After all, I learnt nearly all of them from him.

One thing I have realised since my last post which was allegedly on the anniversary of my operation is that I am a first class numpty.  I had the date wrong!!!  Obviously can't have been THAT important if I got it so wrong...

The bad news, which most of you will already know is that my friend, supporter, fellow warrior and generally superb person Becky lost her battle with breast cancer two weeks ago.  Coming to terms with the loss of someone so young from a disease that I have also battled with is difficult.  This is compacted by the apparent speed with which it claimed her.  I have just looked through my text messages from her and found that we last chatted at the beginning of March.  This sounds like a long gap but we both knew the other one was there. Looking back, I had some idea things were not going brilliantly for her.  She was very quiet and did not acknowledge a couple of cards I sent her - most unlike her.  I did not expect recognition for them, she was just always so concientious  I had also noticed that every time I drove past her road, her parent's car was parked outside her house.  Becky handled her approaching death with the same dignity, lack of self pity and massive strength that she showed throughout her fight. 

Becky was only 31 when she died.  She was diagnosed before her 30th birthday.  You are never too young for Breast Cancer.  Just know your own body and react FAST if something changes or seems wrong. 



Dedicated to Becky, Nathan and Neve xxx

Another day

A year ago today I met a fantastic woman who has become a brilliant friend.  Although our journeys have been slightly different, we started in the same way, under the surgeons knife in Wycombe Hospital.

Today is the anniversary of my op.  I have, for some obscure reason, found this morning tougher than the anniversary of my diagnosis.  I cannot fathom why this would be as I have never really been THAT concerned about having it lopped off as you will already know.

Any wobbles I can only put down to not having a day out with the children planned to distract me - the trip to Woburn on the 10th was a militarily planned operation - tickets purchased in advance, cloak of mystery developed to tease the children and everything prepaid so no need to worry about anything.  This is not to say I did not wobble at all on the day - I had one slight hiccup when I could not find the entrance to the Sea Lion theatre for the 3 o'clock show.  The disabled access to the theatre is practically non existent and I ended up at the bottom of the theatre with a long steep flight of stairs between me and the entrance.  For some reason it became the most important part of the day that we did not miss the sea lion show.  Yeah yeah, I know it is just a sea lion show, we've seen it 100 times at Whipsnade but it became absolutely imperative that I did not fail at this.  I think it is one of the most mortifying moments of my life that when a member of staff came up to help, having been alerted by a colleague that I was looking for assistance ,I was in the middle of a flood of tears.  I was so embarrassed and there was NO WAY I was about to explain!  The gentleman very kindly let us into the theatre through the bottom fire escape, brought us our 3D glasses for the cinema experience after the sea lion show and there we sat for a slightly-squirming-with-embarrassment half an hour as the show didn't start until 3.30pm...

Note to self: NEVER EVER have another meltdown in public. 

I think if I am totally honest, my slightly more fragile state of mind is due to the fact that my fabulous Dad is currently residing in hospital having had an enormous operation to remove a cancerous tumour from his pancreas.  This involved the removal of half his pancreas, his entire gall bladder and some of his small intestine.  He is doing brilliantly, now back on solids and the surgeons seem to have reconnected him properly as everything is now working again.  Sorry.  Was that a bit too much information?  Anyway,  I am sure if you know my Dad you will join me in wishing him well. 

I think it is perhaps a little too close to the bone to have my Dad going through surgery and chemo within a year of my journey starting and this is why it is dwelling in my mind so much.

Having said that, and rambled on about my anniversaries this is not to say I am in any way cowed by this.  I got through it.  So can he.  Plus, although I have marked two significant anniversaries this time, I have no intention of a repeat performance in future.  They will again become just ordinary days and I will, in years to come, have to think hard to recall the dates of it all. 

Having said that, I reserve the right to feel extremely nauseous on 18th June.

One year on

A year ago tomorrow I received the potentially earth shattering news that I had been diagnosed with breast cancer.  As I said at the time, nothing changed in that moment except my plans for the next few months and to a certain extent that still stands.  My only addition to that would be that I now live in fear of various tweaks and aches and, through personal experience I am much more aware of how this disease can ruin and destroy lives.  Not just those of the patient but their families and friends. 
I've just read that back and it is wrong.  I do not live in fear insomuch as that implies it is governing me and ruling my life.  I am just more aware of these things and I get them checked out.  Sometimes this is bordering on the neurotic but then I think that it is better to be safe than sorry.
Good things have come out of the last year.  A greater appreciation of the little things in life.  A rearrangement of priorities.  For example, and this is just picked out of thin air because it has just leapt into my head, I am embarrassed to admit that I used to set a lot of store by Valentine's Day.  It was incredibly important to me that I was shown love and appreciation on this one day above the others either side of it.  Whether this was brought about by years spent at all girls schools where the florist made regular trips to the front door, alas never for me, or an inherent insecurity in my own attractiveness I shudder to think.  This year, I found it so unimportant that I even failed to get Ian a card!!!  Unheard of.  If I need reminding that he loves me every day, regardless of which Saint is being celebrated (or massacred) all I need to do is remember his support, kindness and unwavering love during my treatment and recuperation.  One thing that sticks in my mind is how careful and gentle he was when helping me walk to the loo (yep, dignity is something that vanishes pretty fast) when clobbered by chemo.
Another thing I have noticed is the different ways people deal with a diagnosis and subsequent treatment.  I know I have been VERY upfront about mine (although slightly less frontage these days, oops and the dark humour is still there).  Having said that I have fiercely protected my children from knowing exactly what was going on.  We have not referred to the cancer by name in front of them, the chemo was called bad medicine and they helped pull out my hair when it started falling out (even though in retrospect this was not a great idea cos it made my scalp very sensitive for at least a fortnight!).  Now I know not everyone is going to agree with our method of dealing with this in relation to the children but i do cling to the knowledge that each parent knows their own children the best and we knew that they were too young to fully grasp the situation so we talked them through the whole thing in stages as each thing came along. 
The main reason we avoided calling it cancer in front of them was in case they went to school and mentioned it and another child said "oh yeah, my [insert any relative of your choice] had that and they died" thus completely freaking out a small person whilst at school where necessary reassurance was not immediately accessible.
After all.  Two of the main reasons for fighting so hard were my children.
Well.  That and my natural bloody mindedness.
I have recently filled in a form to detail other family members who have been affected by cancer.  This entailed one full set of grandparents, an uncle and an aunt all on my Dad's side.  I filled out the form and gave it to my doctor to send off.  Two days later I had to phone them up to add my Dad to the list.
He is OK.  He has to have a big operation and then chemo but at the moment the doctors seem pretty confident that they have caught it early which is incredibly lucky as his particular cancer is normally symptomless and usually only causes visible issues once it is too late.  Thankfully Dad's one tumour blocked his bile duct so the gentle orange hue was a good indicator!!!
So 2013 is not going to go quite how we thought either....

Goodbye 2012

I know, I know, I know, I haven't written for ages but what with travelling to Oxford every day and still trying to be normal in between (a feat in itself for me I know you will agree) I have run out of time regularly - as the late book at school will show, but that is a completely different story for another day.

The radiotherapy is finished.  I have had twenty five doses, travelled 1400 miles and acquired some pretty horrific radiation burns.  Thankfully, a week after finishing the radiotherapy these are beginning to heal but they are still very sore and generally not much fun!  I have to recommend Sue at our surgery as a fantastic bandage applier - at least I get some sleep once she has dressed them as otherwise the duvet rubs on them and makes them worse, not to mention the need to change the bedding every other day as they have soaked into the sheets!  Lovely.

Ian has once again been fabulous.  He has allowed me extra lie ins as the tiredness accumulated and is now a pro at the school run, which he relishes doing in shorts and a t-shirt even in the coldest weather.  I am looking forward to hopefully being able to be back up to full speed for all the Mummy duties next term which thankfully doesn't start until the 8th January. 

In the meantime the farm is still not making any progress, the weather is still a problem and the fields are, as a result, still bare.  I can see that the whole farm is going to have to be put down to Spring sown crops this time but that will only ever happen if it stops raining by then. 

Now I do have a little time to reflect I have been reminded of something a friend said before I even started on this journey.  She had realised that being diagnosed with cancer has the unenviable task of making you realise exactly who your friends are.  This is something Ian and I have discovered too.  We have been overwhelmed with support from so many people, some of whom were most unexpected but we have been so grateful for even the smallest of kindnesses.  I am not going to list the people or their actions but you know who you are and I know he will join me in saying thank you. 

This is not to say that anyone should feel they haven't done anything or think they haven't helped in any way.  Believe me, the very fact you are even reading this has helped me through my treatment which has had its many highs and lows.  OK.  Lots of lows, not too many highs.  OK.  No highs really.  Apart from it ending which was quite a rush! 

Although having said that, it feels like I'm on my own now.  I know I'm not but it does feel like I am now once again solely responsible for noticing anything that isn't going right or has changed.  Every single twinge or ache is internally monitored and assessed.  I feel like I am some enormous computer constantly running system checks and making sure that the mechanisms are still working correctly with no error codes coming up. 

So.  If I don't get another chance to sit down and update before Christmas and New Year then I will take this opportunity to wish you all a Very Merry Christmas and join me in a toast to a new healthy and happy new year in 2013. 

I've got a cold - yippee!!!!

Well I feel like I'm knocking through the radiotherapy like there's nothing to it.  Which is true really!  I have already completed 8 sessions and only have 17 more to do.  By the end of this week there will only be 13 left and that means I'll be halfway through.  See?  It's easy!!!!!

However, ever since I started my course I have had a stinking cold.  Really heavy.  The funny thing is, I have almost enjoyed having it.  Now I know this sounds strange, even for me, but it's not really when you think about it - a cold, not something to get worried about, normally.  Since starting my chemo on 18 June a cold was something to be feared.  I was terrified that it would develop into something that would affect my bloods and therefore delay treatment or worse, snowball into an infection that could potentially, if not caught in time, kill me.  It sounds dramatic but it is true.  I distinctly remember being told when I went in for my "chemo chat"  that people do die on chemo.  Not from the disease being treated or from the chemo itself but from an infection picked up and not treated quickly enough.  This rang in my ears very loudly whenever I felt under the weather during chemo (and no, I don't mean from the chemo itself although ,as you all already know that was a challenge in itself).

Having said all of the above, I have now had enough of this cold.  Everything runs its course and I would like to be healthy and well now thank you. 

I feel it would be a novelty!!

Re-growth

So it's been a long time since I wrote - to be honest I have been enjoying the break from treatment although this brings with it the fear that I am not doing anything pro-active to ensure I am as well as possible. 

Having said that I have been doing something - I have started my course of five years of Tamoxifen.  I just need to try and remember that it is designed to starve and therefore kill any rogue cells that could have somehow managed to escape the chemo.  How the hell anything could have got round that I do not know but I know it does happen. 

I have been listening with interest to Mix 96s broadcasts this week in relation to the Cancer Care and Haematology Unit.  The Monday broadcast reduced me to tears.  I know I am not alone in this - I spoke to two other people the next day who had heard it and their reaction had been the same.  A heart wrenching story of Becky being diagnosed 2 days before her thirtieth birthday, going through the chemo (she had much the same reaction to it that I did), following it with radiotherapy, then a year to the day from her original diagnosis finding a new lump (whilst on holiday abroad) and on return to the UK having it confirmed that the cancer has now reoccurred in her liver, pelvis and spine.  This time it is management of the tumours, not cure that is hoping to be achieved. 

A horrifying reality check for everyone but without a doubt I know that everyone who has heard the broadcasts this week joins me in wishing Becky all the best and that the CCHU are able to control this for years to come.

In the meantime, my hair is growing back properly at last.  The overwhelming colour is still skin so no reveal for a while yet but at least I feel that it is making progress. 

The stupid thing is, for some reason I appear to be surprised that not only the hair on my head is growing.  On getting undressed the other day I thought things felt a bit breezy round my calves but put this down to the lower temperature that day.  Apparently not.  The particularly annoying part is that the hair on my legs is now longer than that on my head.  How is that right?  Or fair?  It will be easily remedied though...

I think that is possibly enough personal revelations for now. 

I have started my radiotherapy today.  I had a mini wobble about it last night as I had been planning on going alone but was suddenly overcome by fear of it hurting.  Stupid I know.  X-rays do not hurt unless they are of something that is already broken, in which case that is a rational fear.  But I have an inbuilt fear of a new treatment now - not knowing quite what to expect has not really helped in the past (memories of the first dose fly back to my mind) so I also felt nervous like I was heading off for my first day at a new school or in a new job.  That fear of the unknown.  Thankfully my big brave hubby came with me so I was able to be a lot braver!  I feel I can manage to go on my own a bit now as I know where I am going and more importantly what to expect once I get into the room.

So.  Easy peasy.  How nice to have a treatment that means you just lie there and can't feel any side effects!! 

Yet.

Exposure

No.  Not that sort!!

It has just occurred to me that two of the most dangerous causes of cancer are exposure to harsh chemicals and radiation.  Bizarrely both of these are used to cure it too! 

Random thought.  Sorry.

What I was actually going to write about was radiotherapy...

I have now had my planning meeting and have my list of appointments.  As well as three new tattoos!  They are barely visible, in fact many of my moles are bigger than them.  They are in a laser guided line across my chest - one down on the left side of my ribcage, one on my breastbone (ouch) and one on the right side of my ribcage. 

SO.  The radiotherapy starts on 8th November and is Monday to Friday until 12th December and all bar one appointment are within 15 minutes of 11am.  Done by Christmas.  So the journey will have taken eight months and two days from the date of diagnosis on 10th April. 

That is not quite the end - five years of tablets follow but hey, I can live with that. 

And that is what I intend to do.  Live.