Tuesday 30 December 2014

A bit of a shite year

As it's New Year's Eve eve, I thought i would reflect a bit on the past year. I've just got out of bed. I've spent the majority of the Christmas break in bed, suffering from tax aches and pains but mostly from awful fatigue. I don't seem to have to do much at all to need to have two hour naps to recover. I'm quite useless and not good at much at the moment, but my ability to sleep is unparallelled. I've put on a stone in weight since my treatment began, partly due to steroids and other drugs, but mostly because I've not been able to exercise anywhere near as much as I was before my treatment started. I tried to run as much as I could during FEC, but once Docetaxel started it walloped me. Now I can only manage one to two mile runs, which then leave me needed to sleep for two hours and aching like I've been inside a washing machine.

Anyway, as the title of this post suggests, this year has been a bit of an arse. I split up with my long term boyfriend, my grandmother died and then I was diagnosed with breast cancer. Triple arse. It's hard to believe that my diagnosis was over five months ago. It seems such a long time ago, but at the same time only yesterday. I've almost forgotten what life was like BC (Before Cancer). I've been picked up and swept along on the cancer tsunami and have now been deposited on the beach picking over the remnants of my life. But although a large part of my treatment is over, there is still a long way to go. I've just been allowed a little respite before the second wave comes to give me a bashing. 

So much has happened in the last five months, it's difficult to quantify it all. But I will try. Here it is:

3 biopsies
3 mammograms
4 ultrasounds 
15 blood tests
1 clip fitting
2 radioactive injections
1 general anaesthetic
1 surgery
2 head shaves
Multiple wig fittings
1 bone scan
6 toxic infusions
7 oncologist appointments
3 surgeon appointments
1 genetic testing appointment
3 late night visits to A and E
1 overnight stay in hospital
8 cannulas
7 lots of test / scan results
1 chest x-ray
3 MRSA swabs
1 arm ultrasound
6 lots of steroids and anti sickness treatments
21 lots of injecting myself
A truck load of other meds
1 flu jab
Several sore and collapsed veins
1 large seroma
1 lot of painful under arm cording 

Plus lots of sleepless nights, bad dreams and tears. There's no wonder I'm knackered all the time! But I don't want to finish this post leaving you thinking its been all bad, because it hasn't. Amongst the tears and bad dreams, there has surprisingly been a lot of laughter too. I've reconnected with old friends and made some brilliant new ones through the Younger Breast Cancer Network. In fact, I'm spending tomorrow night with some of them and I can't think of a more fitting end to this year. I know we'll all be putting a massive two fingers up to the back of 2014!


Monday 29 December 2014

Ode to My Wigs (A Poem)


Ode to my wigs

I love my beautiful wigs
When I put them on my head
I wear them out in public
But inside I'm a baldy instead

The End



Wednesday 24 December 2014

#christmaschemobrow

Our silliness is now an 'internet phenomenom'!

Chemobrow was started by the fantastic Sarah Perry a little while ago - we found a website full of examples of terrible eyebrows and decided to replicate the monstrosities in place of our own balding ones. Here are some of the results:


Divine I think you will agree.

Christmas Chemobrow was born the other day on the Younger Breast Cancer Network and the super talented JoJo (aka The Malignant Ginger ) created a Community Buzzfeed article about our super stunning brows and since then we've been winning the Internet! Sod Kim Kardashian - it's all about the YBCN girls.


This is only a tiny selection. Please feast your eyes on the glory that are our Christmas eyebrows - here are links to the front page Buzzfeed article, Good Housekeeping, Telegraph, Metro (which also features my mum's dog), ABC News and ITV News articles.

We even have our own hashtag! #christmaschemobrow

After a particularly rubbish few days this has cheered me up no end. Love the YBCN girls so much!

Sunday 21 December 2014

Last chemo.....?

I had my last chemotherapy treatment on Tuesday last week (hopefully). I will go in to the hopefully bit shortly...

So many people have said to me 'Oh you must be so happy to have it out of the way'. Maybe I should be. I feel like I should be. But happy isn't how I've felt since Tuesday. I burst in to tears in the middle of town, cried all the way home, screamed and smashed some plates. Smashing plates is quite satisfying until you realise that you actually have nothing to eat off of and need to bugger about replacing them the next day. Since then, I've felt like a bloated, fat toad with horrid indigestion and heartburn and a massive round steroid face. I seem to have ballooned in weight over the last week or so and feel so puffy and uncomfortable I barely recognise myself in the mirror. I can cope with feeling ill, but looking ill and feeling fat, unfit and lethargic I really do no deal with very well.

I'm not sure Tuesday started out too well to be honest. I had to be at the hospital for 9.00am for an appointment for a scans on my bad and good boob, after finding an 'area of irregularity' in it. The letter sent to me was reminiscent of my first diagnosis and almost triggered some sort of flashback, so you can imagine my nerves were considerably on edge by the time I got to the hospital.

After an ultrasound and titty squash, good news was that the good boob was fine. Not so good news was that the tumour in my bad boob hadn't shrunk since October. After meeting with the surgeon once the scans were in, he told me that it is entirely possible that when the tumour is taken out, all they will find is dead tissue. Apparently, when cancer cells start to die, they form necrosis, or scar tissue and that's all that may be left of the bastard. However, there is no way of knowing until it's actually removed. The scans only show a mass and don't differentiate between alive or dead cells. Psychologically it's a bit of a blow - after months of feeling like absolute crap you expect to have some sort of result - indeed there still could be but once again I'm thrown in the pit of uncertainty.

After discussing the results with my oncologist, he told me that in the unlikely event of them removing the tumour and it not having responded as well as they would have liked, there may be the chance of more chemotherapy. Different drugs this time as no point giving stuff that hasn't worked already. Essentially, the chemo is to try and zap any random cancer cells that may have escaped to other areas of the body, such as the bone marrow or liver. Surgery can deal with what is in the breast - the chemo tries to destroy any floaters before they can settle and set up home.

Not the best news, but in one way a bit reassuring that they won't just cast me afloat and there is more they can do. Again, it just adds to the total uncertainty, which gradually I'm learning to deal with. I've accepted I'm never going to know when this whole process will be 'over'. It is impossible to give timescales. I don't know when I will be back at work properly or when I can have a holiday. No - I don't know when I will be 'cured'. I'll never know whether if I go in to remission, whether or not it will come back. I'll never be entirely done with treatment. I'm not sure when I will get some semblance of my former life back, if ever. But enough  - I've purged now. I feel slightly better. Maybe. I just need to avoid mirrors for the moment!

Tuesday 16 December 2014

It's Not Fair (a poem)

Inspired by yesterday's hair post:

It's Not Fair

It's not fair
I have no hair

My head is fluffy
And in places tufty

Chemo has robbed me
Of my eyelash glory

My eyebrows are sparse
The drugs are an arse

There is no leg stubble
And no shaving trouble

I have very smooth pits
But such lethal tits

Cancer is shit
And I hate it

It's not fair 
I have no hair


The End

Monday 15 December 2014

Hair is another update...

As I've started these beauties again in anticipation of my last chemo tomorrow (please, please let my bloods be ok!) sleep is unlikely to be forthcoming tonight. So I've decided to do a bit of a hair update for those who may be interested! So far I've had three FEC and two Docetaxel. So here is the hair situation as of this evening. Be prepared for various photos of my body parts readers. Sadly (or luckily, possibly) no rude ones though.

Here is the top of my head:

Fake tan ahoy!

Here is the side of my head:


And here is the back of my head:

 

Yes, it is quite hard to take a photo of the back of your own head I have discovered!

And here is the top of my head about a month ago compared with the top of my head now:


'Scuse the flat bit at the back! I think I may have been dropped on my head as a child. It would explain a lot.

Here is my left eye and eyebrow:


 Here is my right eye and eyebrow:

  
Look at the darkness round my eyes!! I look like I've been punched. And I have really. By chemo.

Here is my right eye about a month ago compared to my right eye now:

 Meh. 

By the way - I'm not jaundiced right now. I put some fake tan on a little while ago and just waiting until I can wash the guide colour off....

Here is my leg:


Smooth! I have no stubble! The last time I shaved my legs was a week on Saturday.

So, this completes the gallery of hairless (or hairy) body parts. In a nutshell, my head hair is growing but my eyelashes and eyebrows have fallen out since I started Tax, and my leg hair is now none existent. I won't go in to detail about other areas, but lets just say I'm not reaching for the Ladyshave just yet!!

Sunday 14 December 2014

Thank you cancer

Having cancer is shit. It sucks. The fear, the anxiety, the grueling treatment that takes away most of what you once were and leaves behind a person that you no longer recognise when you look in the mirror. The total uncertainty about the future. It brings in to question relationships and friendships and leads to disappointment and sadness as people who you thought would be there for you fade away gradually. It can be lonely, isolating and frustrating.

But it can also bring pleasant surprises. Support from people that you would never have expected it from. The strengthening of some friendships. The people that come through for you. Simple random acts of kindness that make your day. Meeting some fantastic, wonderful people. 

I spent the day on Friday drinking prosecco and mulled wine and talking all things breast cancer with two wonderful ladies from the Younger Breast Cancer Network. I can't stress enough what having the support and company of people going through the same experience means. We're all members of the club that no one wants to be in. We've talked about hair loss, side effects and surgery. These ladies have made me smile and laugh at times when I just wanted curl up in a ball and cry. They've calmed me down when I've wound myself up in to a panic. They have been there day and night when I've needed someone to talk to. Its been one hell of a shit year but meeting these ladies has made it just that little bit better. Thank you cancer for bringing them in to my life.


Wednesday 10 December 2014

Gene-ius

*This post is a little out of date as I wrote it straight after my last chemotherapy I've just been delayed in posting it. I met with plastic surgeons today so I kind of know what surgery I'll be having now. I'll write about that in a separate post....

So on Tuesday the 25th of November I had my fifth chemotherapy session - one more to go hurrah! Now I want to update you all about my genes. You may remember in my recent post about visiting my surgeon , I mentioned asking to be referred for genetic testing. I had assumed previously that if I did have a gene fault that may have caused my breast cancer, that there would have been other incidences within the family. Not the case however. I've discovered after talking to some of the lovely ladies online that is possible for a gene fault to travel silently through a family and to potentially only show its ugly face to one person. Ugh. So it became very important for me to know whether my genes have anything to do with my cancer and what steps I can take to reduce the chance of another one - like having my boobs and possibly ovaries removed. Simple measures obviously!

My surgeon asked them to see me urgently as the results of the testing will affect what surgery I opt for in the new year. My control freak side is also starting to raise it's head again at the moment and I feel like I desperately need to scrape together as much knowledge and information about my situation as possible. Dealing with uncertainty is definitely not my strong point I am discovering! And there is a whole lot of uncertainty here at the moment unfortunately. 

Slight panic (well, considerable panic) when I was told that they couldn't book me in until the second half of January - well after my proposed surgery date. However, they very kindly happened to find me a cancellation for the day after my last chemo this week. Its all go here at the moment!

After driving round for 40 minutes trying to find a parking apace at the hospital and ending up in floods of frustrated tears, I was over half an hour late for my appointment, However, the consultant was extremely nice and saw me anyway - who wouldn't take pity on an obviously stressed out, upset, scared young cancer patient eh?

The two main gene faults they normally test for are the BRCA1 and BRCA2 gene faults, which can be linked to breast, prostate and colon cancer amongst others. I'd spent the night before hurriedly collecting any family history of cancer (of which there is not much at all really - one breast cancer and two prostate cancers), which the consultant entered in to his magic computer, along with the details of my cancer. Nice Guidelines state that the chance of an individual having a faulty gene has to be over 10% once the calculations have been done for them to qualify for gene testing. Once my details and family history were entered, the chance of my having a gene fault came back at almost 38%, weighing heavily on it being a BRCA2 mutation. Yikes. However, this is probably an overestimation as we erred on the side of caution with a couple of areas that weren't clear - possibly three prostrate cancer instead of two and possibly two breast cancers in one relative during her life time.

Anyway, it was more than enough to qualify for testing, so for the second time that week I had yet more blood taken. Two blood tests and one cannula and it was only Wednesday. I am so over needles right now!

The results will determine what surgery I opt for in the new year, as I mentioned in my previous post about my visit to the surgeon. If there is a BRCA mutation, the decision is simple. Double risk reducing mastectomy. If there isn't a mutation, then the genetics consultant can calculate the approximate risk of another primary breast cancer raising its ugly head based on other factors including my age, and I can go from there. Decisions, decisions. I'd rather be pondering where to go on holiday next if I'm honest, but this is my lot right now.

There is also the possibility that the test will show an unknown gene variant - not too helpful really as as the name suggests it would be something that they don't yet know too much about. My DNA will be kept on file so that when new gene testing arises in the next year or so they can retest for other mutations.

Results from these tests normally take about 8 weeks to come back but as mine will be informing surgery they will try and get them back within 4 weeks. Exactly 4 weeks will mean results on Christmas Eve. Merry Christmas to me! Or not as the case may be....

Thursday 4 December 2014

Along came the chemo (a poem)

Lovingly written for some fabulous ladies who have smashed their last chemotherapy treatments this week.



Along came the chemo

There once was a tumour
That grew inside a breast
The cells it was producing 
Didn't look like all the rest

Along came the chemo
It shouted 'off with its head'
It gave the tumour a kicking
And now the bastard is dead


The End 

Monday 1 December 2014

It's my birthday and I'll cry if I want to

So it's my birthday today. I'm 33 years old. Unfortunately chemotherapy side effects have lulled me in to a false sense of security and have chosen today to strike so I think my celebratory tipple is likely to be a shot of this bad boy:


This time last year i was sat under the stars in the hot tub of a luxury cabin somewhere in a North Yorkshire forest drinking champagne. If you'd have told me that this year I'd be knackered, bald, ill and in pain due to chemotherapy after being diagnosed with cancer five months ago, I'd have probably laughed in your face.

But unfortunately, it's not me doing the laughing. Life sidled up to me, stuck it's ugly face in mine and emitted one hell of a high pitched cackle. I have learnt the hard way that life can change in a moment - an incident, a few choice words, a medical appointment . The rug can be pulled from under you and your world spun on it's axis and you'd give anything you possibly could to claw it back to the way it was before.

I used to dread my birthday - about going grey, that extra year. No more. I now know that growing old is a privilege that is sadly not afforded to all of us.

My future itself is uncertain - I don't know how many more birthdays I'm going to get. But there is one thing i do know - I want to have as many more as possible and I will welcome each and every one with open arms from now on.