Diagnosis #2 cancer comes back

I've wanted to write another update for days now but I've not been able to find the right words. So I've decided there are no right words because all the words to describe my latest diagnosis are wrong and scary but most of all just bloody depressing.  This is my problem, I want people that care about me to know what's happening but I don't want anyone to be sad for me, I'm not upset, I don't cry and I don't want anyone else to either.

I now have secondary breast cancer, otherwise called metastatic breast cancer or stage IV cancer.  It's when cancer cells from the original breast tumour spread around the body to other areas, I have cancer cells in the lymph nodes of my chest and neck and also in my liver.  This type of cancer is incurable.  The terminology in the cancer world is very specific, I'm not 'terminally ill', the way it is viewed at this point is similar to having a chronic illness where my condition can be stabilised or controlled for some time through medical treatment. Nobody can predict right now the amount of time I'll have, it depends on how well I respond to the wonderful drugs the NHS have on offer.

Since my last post I have now met with my lovely new oncologist and have a treatment plan.  First step is more chemo, I'll be having weekly doses of Paclitaxel via IV infusion, starting on Tuesday.  It's a lower dose than the chemo I had before and it's given on a weekly basis, I've been told that the side effects should be minimal and my immunity to infection won't be as low as when I had chemo before.  I'm hoping to be able to continue working, just on reduced hours and more importantly keep seeing all my friends and family as much as I possibly can.  I'm keeping my fingers crossed that I'll be well enough to make it to Latitude Festival in July.

I'm taking part in a clinical trial for this next round of treatment, it's to test a new targeted therapy drug along with the chemo. There's still a 50/50 chance I will get the placebo instead of the real drug but it means my response to treatment is going to be closely monitored over the next few months, more so than if I wasn't on the trial.  My Oncologist is also sending me for more gene testing, as I'm young with triple negative breast cancer it's likely to be a genetic fault that has caused me to be susceptible but not one of the main BRCA genes I've already been tested for.

So that's the sciencey bit over with.  Coming to terms with my new situation has been surreal, I always thought I would lose control if this ever happened and have to live out the rest of my days high on Valium.  It's all felt weirdly calm and after a week spent with my family I went back to work. I have just been carrying on as normal, pretending like nothing happened.  At the moment there are two things I'm very grateful for: going to the doctors as soon as I found the lump above my collarbone and then delaying getting my results until after my trip to Paris.  I had an amazing time, even cancer couldn't ruin it.

I'm sorry for the downbeat nature of this blog, I had an overwhelming desire to spell out the facts first  and then I'll follow up with the most sickeningly, life affirming blogs you've ever read.  I promise! 

Me and my wonderful friends in Paris, nearly 20 years of good times and lots more to come ! 

Not the news I was hoping for...

It wasn't good news at the hospital today.  After all the tests I've had, my surgeon confirmed that there is evidence of cancer in my lymph nodes along with 'areas of concern' now showing in my liver.

I have an appointment with Oncology on Wednesday to discuss my new treatment plan.  I'm assuming this will be more chemo.  There's not much else to report at the moment, I'm just dealing with it one step at a time. I went to the hospital with my parents so I had all the support I could have wished for today, they have been amazing  I'm now at their house being spoilt and in a lovely bubble of denial, drinking tea and watching Pointless.

At the moment it's all so surreal, as if someone might suddenly tell me it was all a big mistake.  Wouldn't that be lovely?

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! 

A big warm and fuzzy Christmas thankyou

Last Saturday I spent a lovely afternoon with five amazing women that I would never have met if I hadn't had breast cancer. Actually, over the past year, there are a lot of lovely moments I would not have had if I hadn't had cancer.

The last year has been scary, the treatment has been unpleasant but I have been genuinely touched by the kindness and compassion I've received from everyone I know, quite literally, everyone.  So I am dedicating this blog to all those people. It might make you want to puke in places, but hey, it's the season of goodwill so I'm spreading some, I am learning from first hand experience that life is too short to leave these things unsaid!

After I was diagnosed, I took four days off work to get my head around things and then went back to work full time until I started chemo a few weeks later. I'm naturally one of those people who gets stuck for words in difficult situations, I wouldn't have had a clue what to say to me when I turned up on that Monday so I could understand that I might have some awkward encounters, but there were none.  Everyone in my office was so kind and supportive, I couldn't have asked for a more friendly working environment for those few weeks.  When I returned to work after treatment I had to have a chat with an occupational health nurse, she warned me that my colleagues might have a difficult time knowing how to talk to me about my illness or treatment, so I had to set her straight and explain that I had already been back in work after my diagnosis and that everyone had been fine and really supportive. Maybe it's a generational thing? Perhaps my generation are more honest, open and compassionate?

A big thankyou to the people at work who complimented me on my hair, without knowing it was a wig, and then those who complimented me on my haircut without knowing I had just stopped wearing my wig!  This has led to some very funny moments, and in all honesty I would be more offended if nobody noticed.

Right after my diagnosis when I was feeling my most scared was the time when I felt most loved, my family were so supportive, all of my best friends got in touch to say how much they cared. My best friend Helen couldn't do enough for me.  I have read accounts of other people who go through a cancer diagnosis where they lose touch with some friends who find it difficult to deal with the situation. Again, it's not something I can identify with, none of my friends have treated me like this.  If anything, I have more friends and am closer to some people than I was before cancer.

Half way through my treatment I found out about a Facebook group specifically for younger women with a breast cancer diagnosis.  This has been my lifeline, and the most unexpectedly awesome thing to come from this horrible experience. Having cancer and treatment when you're young(ish) can be such an isolating experience, but since I've been a member of YBCN I've never felt isolated. We chat, ask questions, offer advice and support, it's brilliant.  When I chat about my cancer experience to people I'll often refer to 'other women'.... These are the other younger women on YBCN, whose posts I read every day. It helps to know the way I feel and the way I have approached my treatment are completely normal.  I'm spending New Year's Eve with some lovely people I've met through YBCN, a fitting end to 2014!

It was reading the stories of others online that inspired me to start writing this blog, which in itself has been such a lovely, positive experience.  Something I never imagined I would be doing before I had cancer.

I'm looking forward to 2015, I've not had a wobble over buying a new diary this time. There are plenty more blogs to come, as much as I'd love to put cancer behind me forever I'm waiting on results of my genetics test and I need to have another operation for reconstruction at some point soon.

But in the meantime, Happy New Year and thank you xxxx

Bah humbug?

This is my Christmas message, for anyone who is feeling a bit bah-humbug! Thanks to the NHS and medical science I am lucky enough to be sat here writing my blog tonight, about to go for dinner with my friends, but this time last year it was a different story, I had a crap Christmas.

On 13th December 2013 I was in hospital, I had already been there for two days and ended up being there for six.  A week after my first chemo I had a temperature spike in the night and had to go to A&E . I was given IV antibiotics to combat any possible infection, but I developed an allergic reaction to these and had to be kept in.  Then my white blood cell count plummeted and I wasn't allowed to be discharged until my levels were safe again, I was given daily injections to boost them.  I had another temperature spike again on Saturday afternoon so they gave me a different type of antibiotic, thankfully this one worked and I started to feel better.

I was scared, this was only one week into four months of chemo and things had already gone tits up.  I was lonely, I'd never been in hospital for a long period before and visiting hours just felt far too short, I had no phone reception, but thank goodness I had a TV.  I was in isolation as my immune system was so vulnerable, I couldn't even leave my room for a walk about.

I wanted to call this blog 'the one where I watch X factor in hospital wearing an adult nappy' this episode was one of the moments of the last year that was so surreal it was funny.  I hope some of you see the funny side? On my second night in hospital I had to beg a nurse for an 'adult nappy', the allergic reaction I had to the antibiotics had such a bad effect on my digestive system that I had to deploy extra reinforcement.  I called it an adult nappy, it was really just a very big incontinence pad.  It was a lifesaver, they gave me several and I took one home which I keep in a drawer for posterity.  So I sat in my hospital bed on my own that evening, enjoying the X factor final, over the moon about my nappy.

Once I was discharged I was paranoid about getting another infection and having to go back into hospital, so I hardly left the house, that was where I stayed until my next chemo on Boxing Day...house bound.  No carol service, no parties, no German markets, no ice skating, no shopping for presents.  On Christmas day I couldn't even join my family for dinner because my brother in law's Dad was coming and he and a cold, it was too risky for me to be exposed to germs.  I ate dinner on my lap in front of the TV with my little sister.  It was rubbish, I love Christmas and I couldn't get involved in any of the fun stuff....oh, and my hair had just fallen out!

So if you're having a bit of a moan about battling through the crowds to do Christmas shopping, or having to listen to Slade for the fiftieth time, just take a minute to think, things could be worse.....you could be stuck in hospital wearing an adult nappy!

Merry Christmas

Moving on

I cycled into town today to do some shopping, it's bloody freezing and my hands turned to ice because I forgot to wear gloves, but life is too short to be spent sitting in a queue for the car park and I had a very important mission; buying a dress for my work Christmas party! This time last year I had just started chemo and I had to cancel my ticket to the party, this made me sad. So this year I'll be there, dancing around like an idiot with some reindeer antlers on my head, mine sweeping bottles of beer from the tables... The significance of these moments is huge for me, however inconsequential the occasion, if it makes me feel alive, then it brings a great big smile to my face.  Each small life affirming moment like this is a poke in the eye to cancer, seeing as it's the party season, I've borrowed some lyrics from Elton! Kind of says it all...

Don't you know I'm still standing better than I ever did
Looking like a true survivor, feeling like a little kid.......

I'm still standing yeah yeah yeah
I'm still standing yeah yeah yeah

I've been so busy recently I've not had as much time as I'd like to keep writing the blogs, I love being busy, I love making plans.  I'm single, I don't have kids, I love spending time with my friends and family, travelling up and down the country, seeing people, staying over, staying out late, having a few drinks, eating nice food, going to concerts, exhibitions. This was what I missed most during treatment, your life goes on hold, you press pause for six months and resign yourself to missing out on things, I HATED missing out.  One of the first things I had to do after being diagnosed was cancel the flights I had booked to go to South Africa with my sister.  We had planned to go the following February but I would still be in the middle of chemo so a trip abroad was out of the question. (Although I did buy a fancy iPad with the money I got back...every cloud and all that).  What I felt before I started treatment was a kind of grief, a sadness for the life I thought I was leaving behind, this was one of the times when I felt my most sad and hopeless.  At this stage, there were still so many unknowns about treatment, you aren't sure exactly when you're going to come out the other side.

I've already written about how my surgery was a breeze, but the chemo exhausts you, physically and mentally, your brain is dulled, you lose motivation to even get dressed in the morning, everything in your life is dimmed or muffled.  It's hard to get joy from the things you used to love, I'd meet with friends and not have a lot to talk about except for treatment, side effects and even more treatment.  I didn't enjoy reading, or watching films, I felt like an outsider looking in at people getting on with their 'normal' lives.  You lose a lot of confidence, you look different, you feel different, you're worried that you might die.  Sometimes you spend hours just staring into space without the energy to do anything.  For me it was the side of treatment I least expected, that you lose a sense of who you used to be.  Being a cancer patient is your new identity, it's what takes over your diary and your brain.

So imagine the relief when it's finally all over, it starts small, because you still don't feel quite like your old self, but it happens slowly and gets better and better as the weeks go by.  After months of hardcore treatment and regular hospital visits you are more or less left to your own devices to pick up the pieces again, I wasn't sure how I was going to cope, so I just started making plans.  I was determined to get back to work as soon as I could, I work with some lovely people and I genuinely enjoy what I do.  I wanted to be normal, to drive in rush hour traffic, to be part of the real world again.  I had to have a chat with the occupational health nurse before I went back to work, she wasn't used to dealing with young people with cancer, I told her I had my surgery a month before and she was shocked, when I told her it was in April, she assumed I meant the previous year! I started off working just mornings for a couple of weeks and then started back full time.  I was two months post chemo and one month post op, this was quick but it felt right and in hindsight it was the best thing I ever did.  I wanted to put the past six months behind me as quickly as I could, and sometimes it all felt like it had happened to someone else.

I still had radiotherapy to tick off the list and this was more of an inconvenience than anything else. It required going to the hospital every weekday for four weeks to get zapped by a machine for five minutes, totally dull. They were nice enough to work some appointments around my social engagements....like my friend's hen weekend in Brighton, being in the middle of radiotherapy didn't stop me from dressing up as a mermaid and dancing in a nightclub until the small hours. Radiotherapy generally has pretty minor side effects, it can make you tired, but I never really noticed, compared to what I had experienced on chemo, this was so easy. So, on 19th August 2014 after 4 weeks of 'zapping' I was officially signed off from Oncology and they booked me in for an annual check up in 2015.

When you finish treatment and you're still in one piece it feels amazing, like you've dodged a bullet.  The feeling of relief is similar to when you have a bad dream that you wake up to realise isn't true.  You have 'that Friday feeling' every day of the week.  The old sayings are totally true, I have becoming a walking, talking cliche... I wake up every morning glad to be alive, feel the sun on my face and the wind in my (very short) hair.

If I could go back in time and visit the me from last year, who was just starting chemo and terrified, I would tell her that she's going to be OK actually and she's going to be a lot lot stronger than she ever thought she could be, and that it will finish sooner than she thinks and she's going to look back on it all and feel very proud of how she coped.

This is me moving on, watching Kasabian in Leicester in June with my lovely friend Hannah and in Birmingham a couple of weeks ago with Rich; my brother in law.  What a difference six months and some hair dye makes!!