Dr Rocco

Can you remember what you were doing 10 years ago today?

.... 9 September 2008??

I can.  

I was diagnosed with grade 3 invasive ductal carcinoma aka 'breast cancer', and my world changed forever.

Over the next six months I would endure surgery, which included a sentinel node biopsy to see if my cancer had spread (see picture below....WARNING...graphic, and includes armpit hair!!), chemotherapy and radiotherapy before heading onto five years of hormone treatment.

Chemo...Dec 2008

Chemo 2008

Surgery scarring and bruising (and a hairy pit aka, before chemo!!)

Ten years ago.... !!

On 15 September 2008 my tumour was removed and that should have meant that I was 'cancer free' as my lymph node removal showed no signs of spread, and next week I should be celebrating 10 years being cancer free, but where am I?  Well, you all know where I am, in the worse 'shituation' possible.  So let me update you with what's been happening.

Unlucky 13

Chemo 13 went ahead as planned, it was fine.  Mum came with me and we were done and dusted relatively quickly, just the three hours or so (the only thing was they didn't have any tuna sandwiches left on the lunch round so I had to have egg.... the things I endure hey?! hahahahaha).

Then just a few days after, my fingers started hurting again and going numb..... hmm.  To top it all off I had my bloods the following the week. I headed up for chemo number 14 as usual, but when I got there one of the chemo nurses told me I wouldn't be having treatment that week as my liver levels had increased significantly and Dr A had said he wanted to delay treatment. 

I was given a print out of my blood forms. Fucking hell....my ALT levels (which regular readers will know are the ones that were raised and stopped me from going on the chemo trial drug) were the highest they'd been.  Normal range is 0-40, back when the trial was being considered they were just over 80, during chemo they went up to 100-odd, and this reading was 201 !!!   201.... And to top it off my gamma levels (which is also a liver indicator) were also raised and my tumour markers were off the chart.

This sent me into a complete tail spin.  I didn't know if this meant that the chemo was impacting my liver or that my chemo just wasn't working any more and the cancer was ravaging my body.

An emergency call went into Sue (secondary breast care nurse) that afternoon.  She said she would try and find out what was going on....

The long and short of it was that Dr A wanted to delay treatment by a week to see if it was the chemo that was causing the spike in the levels.  Therefore I would have to wait until bloods the following week to find out if that was the case.... and therefore the wait began.  The fact that the dose had already been reduced by 20% had originally meant that I wasn't to have a break with the remaining treatments, but this had obviously put a 'cat amongst the pigeons' (do you remember that Bros song? I do...my first concert, 1988 at the NEC in Birmingham....anyway, I digress).

Dr Rocco

I was therefore left in limbo until my next set of blood tests and results, and that didn't sit well with me (#controlfreak).

That Saturday was Susie's 40th birthday that we'd all been looking forward to for ages.  Two things marred this.  1. Our friend Helen was in hospital with fluid (4 litres!!) on the lung and therefore couldn't come.  2. I'd been advised to abstain from the booze for a week to see if that helped bring down my gamma levels (as alcohol can impact it)...it's certainly not that I've been drinking a lot through chemo, but it's nice to have a glass every now and again, to take the edge off if nothing else!

Earlier in the day I'd noticed that Rocco wouldn't leave my left thumb alone, he kept sniffing it and trying to lick it and every time I went anywhere near him, he would do the same thing.  I thought it was odd, but didn't want to think about it too much as I wanted to look forward to Susie's party.

I'd been over to Susie's in the day to give her her pressie from me and we had a huge hug and tried not to get too emotional.

The party was a hot one!!  It was soooo hot in the venue.  Mum and I had a little jive which was great fun but absolutely exhausting...I am so unfit now.  When I got home at 12.30am I had a shower as I had been sweating cobs all night (attractive).  It was so lovely to catch up with lots of people.  And for the first time in public, I went fully bald!  I've done that going up to the hospital which doesn't bother me at all, but I didn't really have a head scarf that went with my dress so I thought 'fuck it' and went without.  I'm so glad as I would have been even hotter with a headscarf too. Scorchio.

Me and the bestie at her 40th party

With mum and dad

With Carole, Demi and Jenn

This picture is still making me laugh

Me and Juney

Me and Timmy at the end of the night....blurry

12.30am, home and the make up has stayed on well....not even a lipstick touch up needed. Boom

Sunday I was tired.  Rocco still wouldn't leave my thumb alone so I thought I'd better investigate. I took my nail varnish off and was greeted with a sorry sight.  There was a large white mark under my nail.  I also gave it a sniff (nice)...while my other fingers smelt of nothing, my thumb smelt a bit like when you file your nails against an emery board, so clearly it wasn't right.

My fingers had started hurting again anyway so I wouldn't have noticed anything else but what Rocco had done was sniffed out an infection!! Well done doggins.

I called the chemo helpline and explained the situation and they told me to call 111 to get an out of hours GP appointment.  I got one at 1.15pm and headed up to the hospital where out of hours is based.  I saw a Dr at about 1.25pm and she looked it and said it did look a bit swollen compared to the others and diagnosed an infection and prescribed me some penicillin.  She had said she wanted to put me on different tablets but because of the impact they have on your liver she couldn't prescribe the 'one's that are good for pus' (nice! again!).  She also said if it didn't look like it was getting better within 48 hours to go to the minor injuries unit as they might have to drill a hole in my nail to let the pus out as it was gathering under the nail and not coming out the top of the nail.  WTF!!!! No way...after everything I endure with treatment, this was something I really didn't want to happen!  Jeez....

Waiting at out of hours...

That afternoon Susie, Jenn and I went to visit Helen up at the hospital and Susie opened her birthday pressies from us all and later in the afternoon we had a post-40 BBQ at Susie's, which was lovely.... but made for a totally exhausted Monday.

Rachael Bland

Rachael and her son, Freddie

While still in limbo, tired and wondering what on earth was going on in the mind of my oncologist and what he really thought of my shituation, the cancer community also faced the news we'd all been dreading.  Rachael Bland, one third and founder of the Radio 5 live podcast You, Me and the Big C, had been given days to live.  A stage 4 breast cancer patient like me, 1000s of us had been following her story, and that of Deborah James (stage 4 bowel cancer) and Lauren Mahon (primary breast cancer remission), her partners in crime.  This sent me into a right tizz....

No-one could believe it, it was all happening too quickly.... we knew she was writing a memoir for her son Freddie (who is just 3) and had joked with her husband about the 'other woman' he would eventually find in the future.  She was honest and not afraid to talk about cancer, and try and de-stigmatise death.  I mean, as they say, there are only two certainties in this world.... Death and Taxes, right?!

Tuesday morning and the district nurse arrives to do my bloods.  This is a nurse I've not seen before.  I end up crying on her.  It comes out of nowhere, we're discussing what's going on with me, I mention Rachael and tears come. Flipping heck.

Sue calls to check up on things and tells me that she's not at work on Wednesday so won't be there to check my blood results.  In some way I'm relieved as I just know that they aren't going to be good so I get another 'day off' without officially knowing this.

However, Wednesday things got worse, when we discover that Rachael has passed away, just two days after confirming she had days to live.  The outpouring of love on social media, particularly Instagram, is immense.  It shows that her incredible legacy will live on.  And this is what those of us who blog, vlog, Tweet, Facebook, Instagram live etc try to do.  We try to talk so that others can learn, so that we and they don't feel alone, to open up the conversation, to release our thoughts to make us feel better no matter what we are facing.

It also shows that more, much more, needs to be done for Stage 4 patients.  Of course we know that early detection is key for breast cancer and more people are surviving, but my detection was early, I had no evidence of spread but that one rogue cell still travelled throughout my body, didn't get caught by the chemo in 2008 and is now killing me.  ARGHHHHHHHHHHHHHHHHHHHHHHHHHH.

Needless to say, this has been a difficult week.

The results are in

Thursday I am due to go the hospital anyway for my bone strengthening injection, which I have every two months.  I hadn't heard from Sue in the morning (I was relieved really), so mum and I took ourselves off up to the Rowan Suite to see what awaited.

It wasn't long before I was called by Kirsty (chemo sister) to say that Dr A wanted to talk to me about my blood results... here we go.  I didn't have an appointment with him booked but he obviously wanted to see me.  Mum came with me and my head was spinning. Kirsty said my ALT had raised again but not by much, I couldn't really take in what she was saying.

We went into the room, Sue was there.  I introduced Dr A to mum and we sat down.  He asked how I was and I said I'd felt terrible and petrified all week and then the tears came again. Non-fun times.

Here's the long and the short of it....  We've decided that chemo is now finished....my body is obviously saying 'no more'.  ALT liver levels had gone up again, and so had my tumour markers. In fact, Dr A said that my levels were borderline for treatment last week and therefore with the increase we definitely couldn't have it this week.

Therefore, I have a 4/5 week break from EVERYTHING (unless I get additional symptoms in the meantime)....then I will have a scan.  He said the scan may show progression or may not, but he's not 'too worried' at this stage as there are still options.  Not sure what those are, but I will find out in due course.

That means I have 4/5 weeks of freedom - hoo-blinkin'-rah, while my nails and fingers recover (he gave me more antibiotics for my infected nail and told me to double the dose I was taking) and I try regain my energy levels (I believe chocolate will assist with this, ha), and maybe some hair will start to grow (bizarrely I've had to have it 'cut' twice since my head shave as it's been all fuzzy)!!

PICC line will stay in for now, but I can't fly with it so any trips away will need to be UK or Eurostar... Bruges, here we come!!

Afterwards I had a meeting (and a huge hug) with my breast cancer nurse, Sue, and we discussed everything.  She had suggested some counselling for me, but I don't feel I want that right now.  But I did discuss my mum maybe having some as she and dad are trying to deal with all this shit too.  Tim has found his so helpful, so I'm hoping mum will take it up.

How has this left me feeling?? Slightly odd... I was actually very relieved that I could talk to Dr A face to face and he genuinely thinks there are other options.  But while I know that this may be the case, the two options I've had so far haven't lasted that long, or certainly as long as I would like, so I am not holding out a huge amount of hope for the future options.  However, I am not sat in a sad fog with all that, because it is a complete waste of my life if I do that.  

Yes, life... I have one... it will be shorter than I want so I don't want to spend my time sad and upset and worrying constantly, I want to make sure it is filled with love, laughter and with as much as I can fit in when I feel well.

Which is why this afternoon Tim and I plan to look at holiday options that might be available to us for the next few weeks.

So yes, while I would love to be celebrating ten years being cancer free this week, I know I can't pine for the life I will never have and will just get on and enjoy the one I have got.

Over and out amigos...

Until next time, Kate. xx

ps. Can't remember if I've said, but now all my eyebrows and eyelashes have pretty much fallen out so am soooo glad I've watched all those beauty YouTube videos to learn how to draw them on and cover it up!  Mwah .xx