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!

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

#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!

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!

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

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!!

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.

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....

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 

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.

Run, cancer, run!

This is just a quick post about running. Or lack of it.

One of the hardest things I am having to get used to at the moment is not being physically as strong as I was before I started chemotherapy. Nowhere near. I've gone from half marathon runner to being unable to run half a mile without having to stop to catch my breath.

I managed to keep up the running whilst on FEC to a degree - still not as fast or as far as before but stil managing around four and half miles (wihtout stopping hurrah!). I made a couple of appearances at my running club and even ran a 5k race four days after my second chemotherapy treatment.

But Docetaxel is something else. It has zapped any energy from my body. The side effects I had from my first treatment rendered me bedridden for over a week and unable to walk properly, never mind run. This time round I have nowhere near that amount of pain so I braved a couple of runs this week. I did two and half miles on Thurday and two miles today.  As I said, I have to stop to take a breather after half a mile, my legs are like lead, my lungs feel like they are full of cotton wool and my heart doth protest a tad too much.

However, I am going to keep trying. I will force myself to get out of the house and go for that run even if I feel ike all I want to do is stay under the bed covers and sleep until new year. Because cancer has taken so much from me already and I refuse to let it take anymore without a fight. So - jog on cancer!!

'Roid rage and other stuff

**Ranty post alert**

I had my fifth chemotherapy treatment on Tuesday  - my second Docetaxel. So far, physically I'm not too bad - not as bad as last time anyway. My legs and back ache and I have manky tax mouth again but this time I have to say that so far the worst side effects are the mental and emotional ones. Maybe its a build up of everything so far or perhaps due to the fact that I ave been given eight days worth of steroids instead of the usual three this time to try and stave off horrid side effects but at the moment I feel like this:

Everything is pissing me off. I'm irritable at the slightest thing. I almost attacked a woman who was giving me dirty looks in Primark whilst I was stood in the queue having a bit of a moan. I wanted to scream at her 'I've just spent the best part of the day sat in hospital having toxic chemicals pumped in to my body to try and kill a cancer I shouldn't have after spending the night having little sleep due to steroid intake. Oh and tomorrow I have to go and have my blood tested to see if if I'm a genetic mutant and need to have my tits cut off! So shove your dirty looks up your backside!'

I didn't, however. But I very much felt like it.

I have people asking how I am quite often and most of the time I'm not really sure I tell the truth. I think people want to hear that you're OK, being positive, fighting the good fight etc. and believe me most of the time I am trying. But right now, if you were to ask me how I am I would tell you that I'm tired, irritable, fed up, exhausted and want to lie down on the floor and scream and cry my eyes out. I'm tired of having to take so many tablets a day I have to write down what I've taken otherwise I'll forget. I sick of not being me anymore. I can't get used to not being able to do the things I used to. I've tried to do some work to keep my mind occupied but it's like thinking through custard. I can't remember conversations I've had with people and I find it incredibly difficult to concentrate for more than five minutes. I'm fed up of feeling useless and unable to contribute anything of any value to anyone else around me. I'm tired of feeling guilty about everything. About being ill, a burden, not being able to do what I feel is expected of me. I feel exhausted when I think about how much more of this I have to go. Yes, I only have one chemotherapy yet but then I have surgery - possibly several lots of it - radiotherapy, hormone treatment, uncertainty... To be honest I just want to go back to bed and not get up until its all over.

Anyway, I just needed to get that off my (soon to be chopped up) chest. So I'll sign off by saying - ARRRRRRRRGGGGGHHHHHH!!

Hair today....

This is another post about hair loss - prompted by the fact my eyelashes have started to join my eyebrows at whatever holiday destination they've toddled off too. Yes, my eyelashes have booked it, packed it and f*cked off. My lovely long eyelashes have started to fall out, leaving behind short stubby things that no amount of mascara can enhance. I'm also going to illustrate this post with some photos of the hair loss, so readers as I'm sure you'll be glad to hear, there will be little less of me prattling on and more pretty (ahem) pictures instead.

I've also chosen this post to 'come out' with my baldness. Yes - I am going to post the first photo of me sans hair that I have posted outside of breast cancer forums. This is quite a big thing for me - I never go out without wearing a wig and only very privileged people (or not as the case may be) have seen me in the flesh in all my bald head glory. However, I wanted to go public with my baldness in solidarity with other chemo girls so here it goes:

 

And here is me without the make up:

 Ah the magic of the war paint eh??

I'm now three FEC chemo sessions and one Docetaxel session down. My head hair started falling out just before my second FEC, my eyebrows became very sparse about three weeks or so ago and now my eyelashes have started to do a runner. Oh, and the inside of my nose is also now hair free. Cue perpetual sniffing and carrying tissues around with me like an old woman  - although, may I add - I do not keep these up my sleeve. Not yet anyway....

Another example of the sorcery that is makeup is how well it can hide very patchy and sparse eyebrows:

This eyebrow is brought to you courtesy of Benefit Browzings. It's an eyebrow kit made up of a gel and powder and comes in three different colours. Many of the chemo girls I know find this product incredibly useful once the toxic drugs start to rob them of their eyebrows. It's also good for non-chemo girls (and boys) too I would imagine.

One situation that the warpaint is not so magic in, as I mentioned before, is enhancing the spindly spiders legs that are currently masquerading as my eyelashes. Evidence below:

Oh dear. Up close the top photo doesn't look too bad I agree. However, when you see the full picture e.g. the rest of my face, the eyelash population is quite pathetic. You can see a few of the stranglers from my former eyelash glory that are hanging on quite heroically, determined not to succumb to the chemotherapy toxins.

However, because even the world's greatest mascara can't disguise these stumpy beauties, I have invested in multiple packets of these:

Luckily Boots currently have a three for two on, so I get to stock up on eyelashes and Advantage points. Every cloud and all that.

I'm also currently creating my breast cancer birthday and chemo Christmas list. I've had a few recommendation of serums that can help to stimulate eyelash growth and hopefully bring my eyes back to their former hairiness. These include RapidLash Eyelash Enhancing Serum and Lipocils Eyelash Serum. I've also heard that Fast shampoo and conditioner may also be good for helping me look less like a potato and more like a peach. So Santa baby, if you're reading this - I've been very, very good this year (well, kind of...).

Scalpel please

I’ve managed to drag myself out of the docetaxel induced illness stupor I’ve been in for the last week to write about my visit to see my surgeon last Friday. I’ve been feeling quite useless this week having done nothing of any value apart from sleep and have the occasional hot bath so I’m hoping writing this post will at least go part way to rectifying that. Feeling useless seems to be par for the course for me at the moment, but that’s another blog post….

Anyway, last Friday I went to meet my surgeon to discuss plans for the new year. Not which festivity we’ll be at to see it in sadly, but rather which bits of my body he was looking to remove in January. The first time I met him was when I was coming round from a general anesthetic, looking like a smurf after being injected with blue dye and having five lymph nodes removed. As usual, I was the youngest in the waiting room at the breast clinic by at least 20 years. Cue stares of confusion and puzzlement, particularly when I am called in to the consultation room rather than my elderly relative walk out of it.

The reason that I have been given chemotherapy first is to try and shrink the tumour down so that it can be removed with a lumpectomy rather than a mastectomy. As I am not exactly blessed in the boob department, removing the lump without shrinking it would have left me with what could probably be described as a mangled tit. However, after lots of reading and researching, I have begun to think that a lumpectomy is not for me – rather I would just get rid of both of the buggers to try and give myself the best possible chance of not having another primary breast cancer.  ‘But that’s such a big decision and so traumatic!’ I hear you cry. Yes it is – but do you know what is more traumatic? Having breast cancer. Believe me, I know. A double mastectomy doesn’t remove the risk entirely but it certainly reduces it.

However, this isn’t an operation that NHS doctors tend to do simply on request. As my GP put it, doctors are trained to make people better – to remove bad tissue and leave the good stuff. To remove healthy tissue with no obvious reason goes against the conventional doctor’s way of thinking.

I went to see the surgeon, struggling with the unpleasant beginnings of tax side effects, almost prepared for a bit of a fight. I wanted to ask for a referral for genetic testing purely based on my age. I have no strong family history of breast cancer – my paternal grandmother possibly had it in her 80s however certainly didn’t’ die from it. My tumour also doesn't have the characteristics that can indicate a BRCA 1 gene fault – triple negative and very fast growing (grade 3). However, the simple fact is that I am 32 and I have breast cancer. That in itself is very unusual and for my own piece of mind I need to know whether it is due to a gene fault. Then I can take whatever steps are needed to reduce any further risk of another primary breast cancer or other related cancers.

However, surprisingly the surgeon agreed with everything I said and confirmed he would put me on a quick referral to genetics as the result of the testing would determine the type of surgery I have in early January. For the first time, I felt like someone in the medical profession was treating me as a younger woman with breast cancer, rather than a woman with breast cancer. If that makes any sense at all. He also told me that in dimension terms, my tumour had shrunk by almost half and that a lot of what I could feel now was probably scar tissue, formed when cancer cells die. Pow - take that you bastards!!

So to the surgery and which bits of me will be no more come January. Basically, if genetic testing shows I do have a gene fault it’ll be a double mastectomy, one at a time. I’ll have the bad one off first, with delayed reconstruction as I’ll need to have radiotherapy. Then when they come to reconstruct the bad side, they’ll also take the good one off and reconstruct that one immediately. It does mean I’ll be a one- titted wonder for six to twelve months but I can cope with that. I’m not exactly Katie Price in the boob stakes – it’s nothing that a good prosthesis and a bit of padding won’t fix. Getting naked in front of a new fella (wishful thinking here) might be a bit weird but to be honest, if one temporarily absent boob puts him off he’s not the one for me. Amright, ladies??

Anyway, if there isn’t a gene fault, but the genetics team say I am at increased risk of another primary breast cancer due to my age, the same surgery can still be done, it’s just that ‘there are a few more hoops to jump through’ as my surgeon put it. One of these being me seeing a psychologist to ensure that my fears about having breast cancer again are likely to be reduced by having a double mastectomy. No point whacking them both off if I’m still going to be panicking about it is there? However, I don’t think anything ever ensures that the fear leaves you entirely. As one woman who is now three years from her diagnosis said to me – it never goes away; it just gets easier to deal with.

I’ll also need a level two node clearance , as my sentinel node biopsy showed one node out of five removed involved. A level two clearance basically means taking all the nodes out from under your arm up to your chest. To be honest, this scares me more than the removal of my actual boob.

So basically, the outcome of my genetics referral will ultimately determine the surgery that I have. As regards the type of reconstruction, this is totally way over my head so I’m being referred to discuss this with the plastic surgeons. However, if I lose my nipples. I have decided I want roses tattooed on instead or maybe hearts. Or even the Chuckle Brothers.

I still may be able to have a lumpectomy, but if not, do I feel sad about the potential loss of my boobs? To a degree, yes. I’ll lose a part of me and probably end up with a pair of foobs with no feeling in them that someone could set fire to and I wouldn’t notice. My boobs used to be one of my favourite parts of my body – until one of them tried to kill me that is. So you could say my relationship with them is not the best right now. We’ve fallen out big time. It’ll take me a while to forgive them  - well, one of them anyway. So I won’t be too sad to see them go. But if I do have to say bye bye to my boobs or tara to my tits, I’m going to give them a good send off - a party with bubbly, cake and balloons. And guess what the theme will be.....?

Incredibly Taxing

I'm writing this post sat in bed, which is where I've been for the majority of the last three days. The docetaxel, along with the G-CSF injections I am giving myself to stimulate my white blood cell production have floored me. I don't normally write moany posts, however this one is. So there. I think I'm allowed it. I want to share exactly how bad I've been feeling with the world. I'm ill and feeling sorry for myself and I want everyone to know about it.


Those of you who know me will know that I've coped quite well with chemotherapy so far. The worst of the side effects for me have been feeling quite tired and a little bit 'poisoned'. So the side effects I've experienced from tax so far are a whole new world for me.


After having my first tax on Tuesday I felt fine - better than I normally do after FEC. Then on Wednesday I had the worst stomach pains - think sweating, writhing and moaning - which eventually went off but left me with a tender tum which has steadily got worse. I feel like my insides must be tied in knots. I want to reach in to my abdomen and massage my intestines. Every time I eat or drink anything my stomach protests with placards and a march and leaves me doubled over in pain.


To go with the sore stomach are the bone and muscle pains. A combination of side effects from both the tax and the GCSF injections. Tax is known to cause this type of pain and because the injections are causing my bone marrow to produce more white blood cells it's a double whammy. I feel like I've been in one of these:

Everything hurts. My back, my thighs, my arms, my ribs, hips, shins, neck - even my jaw. My eyeballs hurt. Constant aching and intermittent stabbing pain. The last few days has consisted of me mostly lying horizontal and counting the minutes until I can take more very strong painkillers. I can't stand up straight. Occasionally I've moved to the bathroom to lie in a hot bath, which provides a little temporary relief.


There's also the icky mouth and sore throat. My mouth has that feeling like when you've had that first mouthful of a too hot cup of tea - sore, sensitive and burnt. And a constant horrid taste that when combined with awful stomach pains makes eating really not fun at all.


As someone who has remained quite active during treatment so far, this is all hitting me quite hard. I hate feeling like an invalid. Its like a massive reminder of how ill I am and how huge this all is. I'll admit I've cried - both with the pain and out of total frustration. I'm 32 years old and currently bedridden. I'm fed up and I feel like shit. I'm pissed off too. I'm feeling incredibly irrational and angry at the world. Angry at people who think having breast cancer is 'not the end of the world these days' - that its pink and fluffy and not as serious as other cancers. I'd like to invite them to feel like I have for the last few days and then tell me it's 'not that big a deal'. Pissed off with people just going about their cancer free lives whilst I'm feeling so utterly shite (yes, I said I was irrational). I'm angry at my body for letting me down in the most monumental way. But I have to keep reminding myself that this is temporary, a means to an end, for the greater good blah blah blah.....


So there we have it - treatment for breast cancer. It's definitely big and definately clever. But one thing it isn't is pleasant. Not in the slightest.

A little bit Taxing

Last Tuesday I was due to have the first session of new chemo drugs - namely Docetaxel - or Tax as it's affectionately known. However, my blood test (I am sooo over needles right now) showed that my neutrophils were too low to have chemotherapy that week.

Neutrophils are a type of white blood cell and basically the levels in my blood hadn't recovered from the last cocktail of toxic drugs that had been blasted in to my body. If I had chemotherapy when the levels were so low and my body hasn't recovered, it could leave me extremely ill. So my chemotherapy sessions have all been put back by a week to give my body chance to recover from last time. No chemo last Tuesday. I never thought I'd be upset about not having another toxic cocktail pumped in to my veins but I was. Very. Not only does it mean that any plans I've made are all out of whack now - I have to plan any social and work activities around when I'm likely to feel ok and not be at risk of infection - it felt like a massive set back. Even though in the grand scheme of things, a weeks delay to one chemo session hardly seems like a big deal, it felt like one. My mood had been slipping since around the previous Thursday and I found Tuesday's set back incredibly difficult to deal with. I responded to the impending darkness by writing a blog post about the emotional effects of chemotherapy and cancer - something that is quite often skirted over and misunderstood. However, I'll save this one for another time - be warned - its not very cheerful reading..

Anyway, after a week of frenzied juicing of all things nutritious to try and get my white blood cell level back up, I went back to the hospital today with the hope of being able to be pumped full of toxic drugs. And yes hurrah - bloods all fine - give me those chemicals!! This time round I'd had to start an increased dose of steroids yesterday, continuing for three days. The main function of which is to try and avert any allergic reaction to the Tax. However, an undesirable affect of the steroids was total lack of sleep last night, resulting in a very tired me today.

I didn't have to see the oncologist this morning as I saw him last week - however I was disappointed about this when I realised it was the cute registrar on duty who reminds me a bit of Moss from the IT Crowd. Damn it.

As a result of not having to see the onc this morning, we were welcomed on to the chemo ward earlier than usual. I had the lovely Relentlessly Cheerful Chemo Nurse today as well, who has taken to calling me Bec (I love this woman.)

The oncologist last week gave the go ahead for my other arm to be used to administer the chemotherapy in to this week, to give my poor sore, collapsed veins in my other hand a rest. One of them has packed it's bags and is hiding nervously from impending cannulas as far under my skin as it can get.

Relentlessly Cheerful Chemo Nurse sat with me for ten minutes at the beginning of the administration of the Tax just in case my body decided to reject it and my tongue swelled up. Or something. Anyway all was fine and mercifully it only took an hour for the bag of loveliness (or not) to work its way in to my veins. A refreshing change from FEC, which took more than two hours and left me with pink wee.

One Tax down - two more to go!

So far Tax has left me feeling a little less poisoned than FEC normally does the evening of the dose. However, apparently with Tax, side effects can kick in 3-4 days after administration. These can include muscle and bone pain, more hair loss, sore nails and an icky mouth. I'll look forward to that then..

Because my white blood cell levels were so low last time, I'm now going to be given a round of granulocyte colony stimulating factor (or GCSF) injections during each cycle. These will basically simulate my bone marrow to produce more white blood cells, bringing with them more possible bone pain. Delightful. And the best part is that I have to administer these to myself - injecting them in to my stomach. Yes - this will be my breakfast for the next seven days.

But all is not lost - I get a sexy little travel bag including a little sharps bin and thermometer to go with them!

Right, enough of the Taxing talk for today. I'm now off to do some more steroid induced frantic house cleaning or juicing...or something. Anything other than sleep most likely!

October is over

Hopefully many of you will have taken the time to read the four featured posts from some brilliant women I know, all of whom are members of the Younger Breast Cancer Network.

 

October is now over (and with it 'breast cancer awareness month') but the need to hammer home the message that no one is too young to get breast cancer doesn't end when the pink washing does. You have heard from four fantastic ladies about lumps, bumps and wonky nipples and their treatment for breast cancer. If you take anything away from this (apart from how bloody brilliant these ladies are), please let it the importance of knowing your body and what is normal for you.

 

Make sure you check yourself regularly - and don't just focus on the boobies! Check your armpit areas and up to your collarbone. Take a few minutes next time you're in the shower or laid in bed. You may even want to ask someone to check for you as well  - just make sure its your other half and not some random bloke in the pub....

 

Your boobs may be squidgy, spongy or lumpy (no, these are not the long lost cousins of the seven dwarves.....) - just know what feels normal for you. Become best friends with your boobs ladies! Or 'breast' friends ......

 

Getting to know your boobs from nip to pit will help you to spot any changes. And you know from reading the stories of these four lovely ladies, this can be a variety of things including:

 

Lumpiness or thickening of the breast tissue.




Swelling in the armpit or round the collarbone (remember its not just the boobs!).




Nipple changes - both Sarah P and me had dodgy nips with our tumours - however, I could feel a lump as well, whereas Sarah couldn't. Nipples may become inverted or start to look a bit wonky. Mine started to drag inwards, with a crease through the skin (too much nip info??).


Constant pain in your breast or armpit - although we are regularly told pain isn't a sign of breast cancer, you know from reading both Laura's and Sarah M's stories that it can be.




Any dimpling or puckering of the skin.

 

More information about checking your boobs and what signs to look for can be found here.

 

Remember, if during your booby checking you find anything - ANYTHING - that concerns you or you aren't sure about see your GP as soon as possible. Do not be fobbed off and do not leave the surgery until you feel satisfied with your GP's response. Remember - no one is too young to get breast cancer and you do not need to have a family history. That said (and so I don't terrify everyone) most breast lumps and changes are not due to cancer. But, it can and does happen and the earlier it's found, the better the outcome in most cases.

 

So get tactile with those tits, handy with your hooters! One day it just might save your life.

Younger women with breast cancer - Sarah M's story

The last featured story on my blog as part of this year's Breast Cancer Awareness month is from Sarah M, aged 38:

'On 20th May, aged 38 I found a lump in my left breast , felt by my inner arm, through a padded bra as I was getting into the car.  I straight away touched it with my hand and knew this was something serious that required immediate attention. I panicked realising that since the beginning of 2014, possibly longer I had unintentionally ignored all the signs that this could indeed be breast cancer.

The first sign I had was tenderness in the breast. I had been cupping my breast as I ran up and down the stairs because the movement was making it hurt ( they are only small too, a humble 34B at a push ). I was also aware that for a long time I was repeatedly saying "mind my boobs " to my little boy as we cuddled up. With him on my left side, when he leant into it there was more tenderness than usual. I subconsciously put this down to hormonal changes in my menstrual cycle. I suffered intense itching  around my nipple on and off for ages , possibly as early as mid 2013. Having suffered with itchy skin all over my body since I was a teenager I thought no more of it other than itchy skin.

I had a dull ache for a few months in my left armpit. I put this down to the physical side of my job moving and positioning vulnerable (some very heavy) adults and assumed it was muscle strain.

In Nov. 2013 I completed a course with South Central Ambulance, part of which was using heart monitors. We measured our own heart rates and mine was particularly high. The paramedic training me advised I get this checked which I did. I was tested for diabetes , thyroid problems , blood pressure and a couple of other illnesses that I fail to remember. All tests came back clear, although I just felt something wasn't right with my body . I ached more than usual and tired a lot more easily than I ever had.

Mentally I found I was becoming increasingly short tempered, emotional and anxious ( this could explain the rapid heart rate). I felt something wasn't right, that a change was needed and the fact that my periods were becoming irregular I began to think, and even said to my husband Paul, that I was having an early menopause .

Then a couple of months before finding the lump , Paul came home and gave me a copy of The Sun Newspapers Check 'Em Tuesday guide. He asked me if I checked my boobs to which I flippantly replied " No, I am too scared too in case I find a lump", what a ridiculous comment to have made.  It did however prompt me to check and when I checked properly I did feel the lump there. Yet again I ignored it , comparing to my other breast I just put it down to hormones, how stupid am I.

The final sign, I will always believe was a sign from a higher state of consciousness telling me to sort myself out.  In the space of ten seconds I had three short sharp stabbing pains which I can only describe as somebody ramming a knitting needle down into my breast , behind the nipple and pointing straight to where the lump was.  ( Ladies reading, this is a sign of some types of breast cancer but not the cancer I had or so I am told ). It only happened in those 10 seconds, on that day and never happened again neither had it happened before. Two days later I found the lump.

I didn't phone the doctor straight away as I knew I would be seen the next day and I had an event at the children's school to attend. I wanted to be there for them both and certainly didn't want to have to explain my absence to them or anyone else for that matter.

Two days later I was seen by a female GP who confirmed there was a definite lump , that had been there sometime, which she thought was a cyst. She said she had known of hard cysts before and if it was cancer I would of been seriously ill by now. Rubbish!!!!   I don't know who she was trying to convince, me or herself but I knew this was not presenting as a cyst.  I was referred there and then to Wycombe Breast Clinic.

I went home and Googled every single benign breast condition and their symptoms, resulting in yet more self diagnosis that what I had was serious. I just knew it was cancer.

Two weeks later ( the governments policy for being seen after visiting the GP ) myself and Paul attended the clinic where I was given an ultra sound scan to both breasts , followed immediately by a core needle biopsy, (possibly the second worst experience of my life, chemotherapy coming first by miles!!). I was then seen by one of the doctors in the consultants team. She confirmed that the lump was indeed suspicious and regardless of the outcome from the biopsy I would require an operation to have it removed.

One week later, Thursday 12th June ,another trip to the clinic for the results. After a two and a half hour wait ( these places are pushed to the limit ) a breast care nurse  called us through to see the main man, the consultant heading the clinic, Mr Cunnick. I knew straight away that the top breast surgeon in South Bucks NHS trust ( yep I Googled him too ) was not about to tell me I had a cyst  or anything else benign.  I wasn't even sat down as I was more concerned for Paul, when Mr Cunnick bluntly informed me what I already knew. I had Breast Cancer, no sorry or unfortunately, just, it's cancer,  invasive ductal carcinoma, 8/8 oestrogen positive and receptive to Herceptin. He briefly examined me then explained he would be carrying out my operation. I asked  him to remove both breasts, in fact what I said was " just take the whole boob off and whilst you are at it take the other one as well" but he said it was totally unnecessary and that a lumpectomy would be ample and he would hopefully save my nipple as well. He told me it was not genetic although this is a test I will be fighting for as it must start somewhere.  I then had a mammogram to both breasts and underarm and Mr Cunnick gave the results straight away.  The right breast was clear and as far as he could see there was no lymph node involvement. He explained this was the best type of breast cancer I could have if there ever was a best type and that it was all fully treatable. He told me I would more than likely have chemotherapy, radiotherapy , Herceptin and ten years of Tamoxifen pills . Despite his bluntness and the fact he was telling me I had cancer I really liked him, I trusted him and loved how he knew his job so well.

Five weeks later I had my lumpectomy and a sentinel lymph node biopsy where radioactive dye is injected into the breast and travels to the lymph nodes showing any cancer cells present.  Unfortunately there was metastatic cancer cells in the first  lymph node which was removed along with the second.

After a further two week wait it was back to the clinic for my results. This time the wait was four hours. So at 7:30pm we were informed  all the tumour had been removed with clear margins and the next step would be to see an oncologist who would explain the further treatment required. I thought he could have saved a lot of time by telephoning me with the results.

 

I am now two weeks past my second lot of  FEC chemotherapy. I have a further four to endure. I will then have a month off and start radiotherapy every weekday for 4four and a half weeks at a hospital a fifty mile round trek from where I live. I will have Herceptin by infusion every three weeks at the chemo unit and Tamoxifen pills for 10 years.  It is the worst time of my life right now, but I have to stay positive and strong for my husband, children, family and friends, I am very aware that it is not just me this has affected . I feel lucky a lot of the time that it is not a whole lot worse. I feel sad that so many women a lot younger than me are suffering this .

My tumour had been there for six months.

Had I not ignored all the early signs or been more informed as to what they indicated maybe life would be different now and I would not be dealing with chemotherapy. Consequently had the lump not physically presented itself or indeed grown inward ..................well, I dread to think. That is why it is so important to check yourself regularly and act quickly if you notice any changes. Remember that no one is too young to get breast cancer.'