A funny couple of weeks

It's been a funny couple of weeks, I've spent too much time in hospitals, drank far too much alcohol and tried to go to more spin classes.  A ridiculous combination of feeling very close to my own fragile mortality, but at the same time, so very, very alive.

Last week I was at the hospital for a CT scan to see if the cancer has come back, or to phrase it more positively, to MAKE SURE the cancer hasn't come back.  A few weeks ago I found a lump in my neck, just above the collarbone, it was big enough for me to break into a cold sweat and I called the Breast Clinic straight away to find out what to do.  I booked a GP appointment for the next day and took time out of work to go and show the GP my new lump.  The young doctor agreed that yes, I did have a lump, and he was going to make an urgent referral back to my cancer team to get the relevant tests done.  Then I burst into tears, I think he had said something like 'recurrence' and it tipped me over the edge.  I haven't cried in front of a Doctor for a very long time. During those few minutes sat in that little room I sunk to the very worst places I let my imagination go.  I imagined that the cancer had now spread to all my lymph nodes, it would be incurable and I'd have to have more chemo.  I was so embarrassed, I don't think the Doctor knew what to do, I was telling him I was OK but at the same time wiping tears from my face.  I quickly realised that there was actually no actual bad news yet and it's likely to turn out to be something completely normal. And with that, I dried my eyes on the tissue he gave me, pulled myself together, and drove back to work.

Since that appointment I have had a couple of ultrasounds on my neck, a FNA (fine needle aspiration) to take some cells from my lymph node and finally a CT scan to make doubly sure.  On top of this I had to go for my first annual mammogram on my 'good' boob.

I seem to have an effective way of packaging up fear, I don't know how it happens, until I know something for certain about cancer I don't worry about it.  I don't try to find out what other things it might be, I don't google anything, I don't do any research. Maybe because I'm lazy, but I find it helps to just wrap it up and put it away until there's a solid tangible reason to go back to it.  I will always know it's there lurking in the background but I don't let it affect my quality of life, I certainly don't lose any sleep thinking about what ifs.

Thankfully, the lump has significantly reduced in size since I first found it, it's hardly detectable now, although it's gone up and down in size a few times.  This I find reassuring, I can rationalise that it's one of my lymph nodes swelling up as it tries to fight an infection.

At the same time I have been trying to get fit, I joined up at my old gym last month which was quite a landmark for me, I haven't been since the day before I was diagnosed almost 18 months ago.  The first time I swam 30 lengths in the pool I felt a bit emotional, when your body has been through so much it's amazing to be back in control, feeling strong.  So I've stepped it up a gear and started going to spin class, it's tough but I'm the only one in there smiling because it makes me feel so alive, my heart is pumping, doing exactly what it should be doing.

It's not all been hard work at the gym though, I had quite a monumental night out on Saturday with the awesome girls I have met through Younger Breast Cancer Network (YBCN).  We drank a lot of cocktails and stayed out far too late.  This weekend I'm going to Paris with 6 of my very best friends, it's a weekend away to celebrate me finishing treatment and to make some more amazing memories together.  I couldn't have got through the past 18 months without them.

So I've postponed my results appointment with my surgeon until after my trip to Paris, once you know something you can't un-know it.  Although I'm feeling 99% positive about the results there's always the 1% of me that remembers the very positive girl who turned up to her first results appointment to be told she had cancer...

I'll keep you posted!!  Photos below of me modelling Glenfield Hospital's finest range of hospital gowns, I think surgical blue might suit me.

A lot to think about

This post has been taking me a long time to write, I wasn't sure what I wanted to write about, I wanted to give an update on new important events happening in my post cancer world (the fun never stops) and also how I'm coping with life after treatment.  This is the problem, moving on is such a confusing time, which is why it's taken me so long to write about it. I don't know where to start.  I'll start with the update and then I'll try to explain the confusion.

UPDATE

As I'm under 40 and my breast cancer was a type known as 'triple negative' I qualified for genetic testing.  I went to the Genetics department in November for a session with Penny, the lovely genetic counseller and I agreed for them to take some blood which was sent off for testing.  In January I got the results and found out that my breast cancer wasn't as a result of a faulty BRCA gene.  I am relieved that I now don't have to consider having my 'good' boob chopped off and eventually my ovaries removed.  I'm also pleased that the rest of my family don't have to get tested too.  So my 'early onset' breast cancer remains unexplained for now, shitty odds I guess??  The hospital have asked me to take part in a further genetic research project as my Grandmother on my Mum's side had colon cancer at a young age and they think that there could be some significance in this.

I've also been to see my surgeon recently to discuss options for permanent reconstruction. My expander implant is only a temporary solution, although I have become very attached to it.  I've almost made a decision , I think I'm going to opt for a procedure that uses muscle and tissue from my back to make me a super new boob.  However, it will mean another long operation, another stay in hospital, another month of not driving. More scars, more drains and maybe a catheter if I'm lucky!  Having been back at work for almost a year now I'll certainly be glad of the enforced bed-rest, I still have series 5 of Breaking Bad to get through.  I know it will be some short term pain for long term gain, but I'm still nervous about it.  It will be at the same hospital and on the same ward where I was for my mastectomy.  I'll be certain to do a nice gory blog post, with lots of pictures of horrible drains and stuff...

CONFUSION (warning...I talk about people dying from cancer, me included)

A lot has been going on in my little brain recently (the bit of my brain that's not thinking about nail varnish and Royal Blood that is....). My online cancer group has lost some members in the past couple of weeks to this horrible disease. One in particular has been difficult to deal with, as it was a lovely girl called Claire who I met at a YBCN lunch in Leicester back in September.  She was only diagnosed in April last year and already she's gone, at the age of 30 without even having a chance at getting her life back after treatment or a reprieve from the horribleness of chemo. News like this gets me locked in a spiral of guilt, I feel extremely sad that someone has been lost to cancer, I feel scared because I know this could very well be me at some point, I worry about dying, I feel guilty for being selfish and thinking about my own prognosis when I'm fit and well....this goes on repeat...and repeat.

Everyone in my position who is successfully treated for a primary cancer is painfully aware that cancer is a horrible disease that likes to make a comeback.  I know my percentage chances of surviving 5 & 10 years from diagnosis, they're not the best due to my original tumour being large, aggressive and 'triple negative' (no hormone treatment the doctors can give me). The odds could be a hell of a lot worse though, and for that I'm grateful.  It's such a confusing thing to think about how long I might have left, I can't make up my mind.  Should I act like I only have a couple of years to live? Sell my house, go off travelling, cram in as much as possible? Or should I pretend like cancer never happened? Pay into my pension, plan sensibly for the future?  I'm trying to muddle through at the moment, hoping that I make the right choices.

I was 35 at the time of diagnosis, I had not long split up with my long term boyfriend, I don't have any children.  My life was not going in any particular direction, I was hoping that I would meet a lovely man, get married, have some lovely children, then cancer popped up just to make these things even harder.  I spent months shuffling around in my 'chemo coat' and a woolly hat trying not to look like a cancer patient, and definitely not in a position to do anything proactive about meeting my future husband.  Who would want me anyway? (is what I thought) with my odd boobs, short hair and hours of hilarious cancer anecdotes??  I have since found out that there are some super, super men out there that really don't give a shit about any of the above and actually think I'm quite amazing to have coped with it all.
 
Anyway, this doesn't make the 'life choices' bit of my brain any easier to navigate, it's all tinged with cancer worry now.  I'm not 100% sure I'm still fertile, my periods returned in October which was an encouraging sign , they're not that regular yet but I'm still keeping my fingers crossed.  I now have all the same concerns and worries of a normal 37 year old single woman, just with the added bonus of cancer worries on top.  So when everyone else around you thinks you're treatment is over and you're 'fixed', it's quite the opposite in fact.  You're still coping with the psychological fallout, because whether you like it or not cancer has changed the way you think, there's literally no escaping it.  I've been refused life insurance, I have to buy special travel insurance, I worry about getting my 5 a day, I drink green tea, I wonder about parabens everytime I buy shampoo, am I consuming too much caffeine, alcohol, sugar, soya, processed foods? Should I be getting more exercise, will I get lymphodema?  How long have I had this cough? Why is my hip hurting? Why do I have a headache?  AAAAAaaaaaggggghhhhhhhhh!!!!

Happy Birthday to me! 

My first chemo

Originally I intended to write one post about having chemo, I've had to re-think this, I started writing and I just couldn't stop! I found it hard to condense my ramblings about 18 weeks of weirdness that are quite impossible to describe. Having chemo is like a strange fog descending on you that affects your mind as much as your body, it takes some serious determination to go back for it 6 times, that 6th one was so much more of a mental challenge of endurance than anything physical.

A lot of women with breast cancer have surgery as the first part of their treatment, not me, I was different. My cancer was an aggressive grade 3 tumour and it was discovered that it had already spread to at least one of the lymph nodes in my armpit.  Because the cancer cells were on the move around my body already the best way to improve my chances of being cancer free was to blast my whole body with chemo to kill any cancer cells, anywhere.  Also, my surgeon wanted to shrink my lump before I had surgery, there could have been a chance I might not need a mastectomy.

My first chemo was scheduled for Thursday 5th December, just 3 weeks after I had been diagnosed. Whenever I tried to imagine what chemo might be like, all I could envisage were scenes off the TV or things I had seen in films where people got really, really sick! I was so scared that this would happen to me. I thought I would be spending the next 18 weeks too tired to get out of bed, throwing up all the time.  My surgeon had been very reassuring about the effects of chemo when I was first diagnosed, she said some people don't suffer too badly from side effects and they actually carry on going to work during their treatment, as this was from someone in the medical profession I tended to believe her.  My Gran had chemo when she had non-hodgkins lymphoma about 10 years ago and she was never sick.

I always find myself wanting to write 'I don't know how I did it?' and looking back now I think I just went into autopilot, I had no choice but to have chemo, no going back, no running away, what was the alternative? The phrase I used at the time was that I just had to 'suck it up' and that's how I approached the inevitable, with grim determination.  Its strange to admit that I had a weird curiosity about how it was going to affect me, when would my hair fall out? What would I look like bald? I spent the 3 weeks before chemo in a hospital whirlwind, having scans and tests, but still working full time, only having time off for appointments, I even went into work the morning before my chemo, I was bonkers.  I just wanted that final bit of my normal independent life for as long as possible until I had to put it all on pause to go through treatment.

The actual process of receiving chemo is surreal, having something so poisonous put into your body shouldn't be so relaxed and normal.  It's as if you expect a more dramatic fanfare for the hideousness that's about to happen, an explosion, an alarm, an electric shock... The reality is such a non-event.  You are handed a cocktail of anti sickness pills to swallow whilst you sit in a comfortable chair with a lovely nurse chatting to you. All the time she is slowly and gently injecting syringe after syringe of toxic chemicals into the canula on your hand. You look round the room and everyone else is the same (albeit a lot older than me!) sitting there patiently waiting for the drugs to go in, no drama, just chatting with a friend or reading a book.

After about an hour, the nurse takes the canula out and you're allowed to go home with just a plaster on your hand and a bag of anti sickness drugs to show for it.  You feel pretty much the same as when you walked in. I had a made a chemo plan with my parents, I was going to stay at their house whilst recovering from each chemo so that I could completely relax and concentrate on getting better. So after my first chemo we had to drive back to Solihull, a 45 minute journey, I sat in the back of the car with Mum clutching a bottle of water and a plastic bag in case I was sick.  Before I had left the hospital my chemo nurse scared me by saying that if I was going to suffer from sickness it could come on quickly, so I was prepared to put the bag into action at any second.

It never happened, my worst nightmare never actually materialised.  Minutes passed, and then hours
passed and I still felt fine.  I know I am extremely lucky to have tolerated the chemo this well for the
first few days.  I took my anti sickness meds religiously and after 6 days I thought I had got away lightly with the dreaded side effects. Sadly, I was wrong, almost one week after chemo I woke up in the middle of the night , sweating and shivering, with a temperature over 38 degrees.  This is what the Oncologist warns you about, this is what the Chemo Information session warns you about, this is why you are given a 24 hour emergency helpline number and a red card to flash in every A&E department to ensure you get treatment immediately.  A high temperature is a sign of infection, chemo destroys your natural immune system so you need to go to hospital to be given intra-vinous antibiotics.  Damn! I thought I had got away with it, this had just got a lot more serious, up until now I hadn't felt like a cancer patient, I hadn't even lost my hair yet, but now my sister was driving me to A&E in the middle of the night.  It was the beginning of the longest six days of my life, I had an allergic reaction to the antibiotics they gave me, then another temperature spike, then my white blood cells went too low for them to allow me home. I was given a private room at the hospital as I had to be protected from infection but there was no phone signal, no wifi, I was so bored, and lonely and miserable.

A few days after I was discharged, my hair started falling out.  When I returned to the hospital for my second chemo I felt like I had earned my place in that waiting room, there were no strange stares from other people trying to work out who the patient was, it was bloody obvious now.  The photo below is me having my second chemo, on Boxing Day 2013, Merry Flippin' Christmas!!!