The one none of us wants to read or believe

Thank you all

It is with a heavy heart that I am writing this blog, but the time has now come.

Unfortunately, we have received the devastating news that my liver cancer is now not controllable and I have no further treatment options available to me.

This is likely to come as a shock as I know just a couple of weeks ago I said I was starting a new set of chemotherapy drugs and there was some hope.  I was able to tolerate six sessions of this drug but was told last Friday that my cancer was not responding to it and is now ravaging my body.

Therefore I want to take this opportunity to thank everyone who has been following me.

I know you will respect my wishes that I now want to spend as much time as possible with my family and very close friends with as much time as I have.

Legacy

I hope that I may have inspired you in some way with how I have handled my time with cancer and how it hasn't always 'got in the way'.

Cancer has brought some wonderful things and opportunities to my life, and has pushed me to do things I may not have done otherwise.  I am so proud of what I have achieved as a woman, as a woman with cancer, as an awareness raiser, as a fundraiser.  For Susie and I to have had a room named after us at the Worcestershire Breast Unit is one of my proudest achievements.

I know I couldn't have done all of this without my incredible family and friends and to them I will be forever grateful.

I hope I have also made you smile and would like to remind you to be kind always and try and give back where you can.  I can't tell you what fundraising and awareness raising has brought to my life.  It has enhanced and enriched it.

So it's time to say goodbye and thank you and I'm sending my love to all.

Please enjoy your life. Don't have regrets.  Don't put things off.  Don't take your health for granted. Time is so precious.

Yours always,

Kate. xx

When the shit hits the fan....

....it makes a right mess

It is now 28 September 2018 at 1.04am.  At approximately 1.45pm yesterday, I was told that my cancer has progressed.

Despite being dog tired when I went to bed at 11pm tonight and then deciding to have a sleeping tablet as I was so uncomfortable and also breathing shallowly, I am still bloody awake!

Needed to add in a calming picture of this week to calm down while writing.... Brean Sands

So this is how things panned out yesterday/today and have been a topsy turvy whirlwind...

Most of you will probably know from the last blog/vlog that there was some discussion about what was going on with my liver...mainly because my abdomen was starting to swell, badly.  In fact, I can tell you that I have put on half a stone in less than two weeks, am the heaviest weight I've been in my entire life, look like a pregnant woman without the enlarged boobs and can barely do up any of my clothes.  This means that I am constantly uncomfortable and am having much more difficulty moving about and even breathing etc as all my organs are squished.

I messaged Sue, my nurses, earlier this week to tell her that things seemed to get getting a bit worse and that I was just not tolerating this well... in fact, I've felt that I've just been 'existing' these past few weeks while I've been off treatment, rather than 'living' at all.

In my last appointment with Dr A, when we decided to stop the chemo, he had said that there could possibly be a stablisation of the liver or a progression, but when this stomach stuff started happening the CT scan (which would have been about 7/8 October time) was brought forward.

Anyway, she said she would talk to Dr A and get back to me.  Originally she said that I would be getting an appointment on Friday and that my scan results would be in!!  At this point I was thinking I would at least get 'drained' as well as there had been some speculation about abdomen distension which Cancer Research describes as the following:

"Liver cancer can cause swelling of the tummy (abdomen). This might be because:

• the liver gets bigger from the growing cancer, and causes swelling on the right side of your abdomen
• the cancer (or cirrhosis) increases pressure in the liver causing blood to back up in the vessels (veins). This forces fluid out of the veins into the abdomen (ascites)

The increased pressure in the veins can make them swell so they might be seen under the surface of your abdomen. Ascites can also develop when the liver isn’t making enough blood protein (albumin).

A swollen abdomen might cause discomfort or pain, and a loss of appetite or feeling full quickly. 

A swollen (enlarged) liver can cause pain in your right shoulder. This is because the enlarged liver stimulates nerves that connect to nerves in the shoulder. It is called referred pain."

My friend Helen has been 'drained' before and has spoken about what a relief it was as it immediately felt lots better and I was hoping to be in that position too.

I then got a call from Sue on Wednesday saying that they had managed to get an appointment with Dr A on Thursday at 1.30pm.  Tim and I didn't tell anyone, and let most people think it was still happening on Friday.

So it was with some already deep understanding by both of us that we were going up to the hospital to get bad news.  Sometimes you just know.  I mean, with an expanding stomach, it can't be good right? I've been sat for the past few weeks on no treatment just thinking, 'it's growing, it's growing'....It's been such a difficult time.

We played a couple of crosswords and an Arrow word from one of our trusty puzzle books and were called through by Sue.  There was a 'feeling' in the room.

Dr A asked how I'd been. I said 'fed up', we talked a bit about the trip to A&E and how it started with the shoulder pain (see Cancer Research info above), explained how it had started to spread to my side and then showed him the outline of my stomach and said I wasn't in a great place.  He asked if the steroids were helping (as if the liver is inflamed it should help in reducing it).  I said they hadn't so far, but had only been given the instruction from him, via Sue, the day before to double the dose, so I'm to keep on with that to see if that will help.

Then he said, 'right, to the CT scan results'.  He leaned in a bit and then the words we were expecting.  'There has been progression in your liver and your liver has also enlarged'.  Basically, my liver how grown from 18cm to 23cm and I have new tumours which have developed since the Paclitaxel chemotherapy finished.  

However, what he did say is that there is no fluid showing at all and that all my stomach swelling is because of my liver.  Your liver is held in a sac and it is getting stretched.... oh jeez.  I was at least hoping some sort of draining would mean some sort of relief, but Dr A informed me that he had sat with the radiology team that morning to go through my scan in detail to check everything out (which made me feel better, and that he is totally thorough) to know exactly what we're dealing with.

Oh he also said that my tumour markers (from bloods) were off the charts...

There are no other mets (ie. other cancer lesions) in any other organs, or any in of my bones (where it started originally along with the liver), but if they can't get the liver under control, then we all know it's curtains.  Your body can not live without the liver and its vital function.

Going back onto hormone treatment is not an option as it will not be strong enough to try and control the liver issues, so what now?  

Well, it's straight back onto chemotherapy.....lucky me!  None of that counting bullshit like I did when I was trying to reach my magic number 18, now I just hope, hope, hope that it fucking works and stabilises things and helps to relieve the symptoms.

Needless to say at this point, I had a bit of a cry and it was almost quite comical as neither Dr A, Sue nor Tim had a tissue to hand... I was a trooper and just used my sleeve! ha.

I said that I didn't know if I was going to see Christmas.... Dr A said, this is another chemotherapy and there are still some others if this one doesn't work so he wasn't concerned about that. He said you'd know by my face if I was concerned about it....er, so I'll need to work out that 'face' in future then!!!  But we all know that the more options I try, the more they run out, right?  I know medicines are coming on line all the time, but for those of us on borrowed time, it is unlikely to become a reality.

The caped crusader?

My new chemo is in tablet form and runs on a three week cycle.  It's called Capecitabine (or CAPE for short).  Macmillan explains it all here.

Being a tablet rather than IV drug infusion means no cannulas for a while (small mercies?).  The tablets run over a course of three weeks (like most chemotherapy, the cycle is three weekly).  I have to take two tablets a day for two weeks, then have a week off before having blood tests, seeing my oncologist for a review and, hopefully starting the next cycle.

The CAPE will give me an increased risk of infection as my white blood cells will be significantly lowered (basically knocking out my immune system), so the advice has been to get my flu jab as we are coming up to 'that' season.  Also it is known for giving significant diarrhoea and sore hands and feet. Fun times.

There is possible hair thinning but not loss per se, and given that my hair is just growing back, I'd be grateful if it didn't start thinning again!

The question from Dr A was if I was happy to start the chemotherapy immediately ie. tomorrow.  He's spoken to Sue in advance of the meeting who had said she thought I would be likely to say 'yes' so they had got everything ready. 

I had to have a consent form, I had to have a pre-chemo chat with the chemo sister (Kirsty...what a star) and have bloods done.  So Dr A got all that prepared and asked me to see him in two weeks time to see how things were going.  

We all shook hands then I was taken to be weighed and have my height taken (which they have to before every person starts a new chemo, even if they've only just finished a previous regime) then I went into Sue's office where Kirsty went through the pre-chemo chat.

We all had a good moan about it all....I've got on really well with the chemo nurses on my time at Rowan and feel I can rant and rave as much as I want.

Kirsty took bloods out of my PICC line for the last time as it was agreed with Dr A that it could now come out as I only need bloods every three weeks and won't need it for IV chemo.  As a PICC leaves you with a risk of infection, blood clots or kinking, we all discussed that it made sense for it to come out.   

And that's what it did....within two shakes of a tale which I couldn't even feel, it was out of my arm.  When I'd had my first one removed I really felt it when it was removed as that one was kinked (and as we know it was never really put in properly in the first place)...it was awful, but this one is a breeze and I will be grateful not to have to wear a plastic sheathe over my arm when showering any more and have a bath without worrying about it getting wet!!

Kirsty said I was booked in at 11am tomorrow to come and check on the blood results and pick up the CAPE (which I'm not to touch with my bear hands as they a cytoxic!!) and get some anti-sickness drugs etc etc.  

Sue came back into the room and had a good chat with Tim and I about where we were, how we were feeling and had a hug. She also mentioned it's possible that the symptoms won't be fully relieved by the steroids or the chemo drugs so Sue and her 'symptom management colleague' Gayle are coming to see me next week.  If there has been no improvement I will be gradually taken off the steroids to see what other techniques are available for dealing with a huge liver which is squashing my other organs!

So that in a nutshell is what's been happening in the last 24 hours or so.....  Oh, that and then having to tell our nearest and dearest...always my favourite job post hospital visit!

A sense of relief

When we were home, eating cake out of necessity, finally Tim and I both admitted that, despite the shit news, we are both glad that we have some 'answers' and that also treatment can get started again rather than be stuck in this limbo scenario.  

We actually felt a sense of relief and a weight off our shoulders, so we took the dog for a walk in the last of the evening sun and filled our lungs with fresh air before dining on home made pizza, which despite not being able to eat as much as I want as there is no room for my stomach in my squished organs, was bloody lovely and welcome.

Seaside and Rock Houses

Luckily (for me, not him necessarily) Tim has had this week off on holidays (as you know we were meant to be going to Brussels, but thank goodness we cancelled that as there is no way I could have walked for long or handled travelling so uncomfortably) so we've been able to go to hospital appointments etc without too much faff.  However, we have managed to do a couple of nice things this week, within my limited parameters.

On Tuesaday we went to Brean Sands which was lovely.  The sun was shinging, there was scampi and chips and the dog could run and chase his ball to his hearts content.  We were only there for a couple of hours, but the peace and tranquility was lovely.
 

At Brean

Peaceful

The dog ran around all afternoon

My two faves

Then before our hospital appointment this afternoon we decided to visit Kinver Edge in the morning, again somewhere we'd never been, but Tim's counsellor had suggested it and also meant we got another use out of our National Trust membership.  Despite it being a bit of a struggle me walking up the small slope to the Hill Fort, the views were wonderful.

Kinver Edge

As far as the eye can see

Calming views before the hospital appointment

Branch shade mark on my newly growing hair

Rock Houses (getting the most from the National Trust membership)

Quaint

Where there's a will, there's a way

Oh, and on Monday we went to finalise and sign our wills, then I spent the afternoon writing an expression of wishes regarding various things.  

I'm actually meeting with a funeral director next week as well to get an idea of options available (no hearse for me, that's for sure) and Tim and I have also had the discussion about my cremation and 'leaving drinks' (who likes to call it a wake??)...I already know I'm going to be gutted not to even attend my own party in person!  

I mean, can you imagine having those conversations with the person you love the most when you're 42 years old.  But the more of this stuff we can get sorted now, the 'easier' it will be when the time comes.  It's made Tim and I both sad.  Tim spoke to his counsellor about the past few weeks at his session on Wednesday (he missed his Monday appointment as we were still at the solicitor's finalising the wills....oh, the irony).  

He said it's great to have someone he can just moan at and pour his frusration onto.  He's usually such a calm, take-it-in-his-stride person, but when you are watching the love of your life go through what I am and wondering what the future without her will bring, you need to talk/moan/whinge through it with someone objective rather than just drink your sorrows away (well, maybe along side that too! hahahaha).

Mum has also now agreed to get the ball rolling with regards to having some counselling too.  She's very lucky that she has one particular group of friends who she meets fairly regularly who will allow her just to talk and get upset if she needs to.  

However, we both have others who clearly find it very difficult to listen as they are mainly trying to protect themselves from their own emotions.  Personally I find it very, very frustrating when people say, 'oh, you'll be around for a long while yet', when, 'no', I'm afraid I won't be and the sooner we all get into our heads, the better.  

Mum and I have, in some way, both come to terms with that, I think Tim has in his own way too and we've discussed that we don't want to spend the time I have left moping around as you wouldn't want to look back on times where we've all the had the opportunity to spend with each other and regret just being miserable.

There are times when I get angry and frustrated and take it out on people because I can't do the things that I want to. I'm such a get up and go person and generally try and be as encouraging with myself as I can, but I'm not some super human.  

I'm not 'fighting' as I can't fight a one sided battle that my body will control...I will take everything that's thrown at me medically to try and give myself the best chance of a 'good life' with what time I have left, but there is quality of life to consider too.  It's really easy for people to say 'stay strong' but how....tell me how I do that?  Most of the time I do, and I honestly don't know how I do it, but I can't be pressured by other people's insecurities or rubber necking of my situation to do it, it can only come from inside me and those that truly live with me through this.

So on that somber note and at 2.50am I'll sign off.... I feel so woozy I can barely see straight.... cheap date!

Until next time readers. xx

Hannibal Lecter

Tasty

Hannibal Lecter was notorious for enjoying some liver with a nice Chianti.  Well I don't think he would think mine was particularly tasty, full of tumours and potentially enlarged! Sigh....

For those who've not caught up, here is the latest vlog of me filling you in on what the oncologist has said....Entitled, 'Cancer = Non fun times'

https://youtu.be/329eQtXBVZE

So since then I have been put on steroids, painkillers and tablets to stop acid reflux (because of the steroids), they are to help with the bloating and pain I've had in my stomach which could potentially be due to an fluid surrounding my organs... great!!  The scan should hopefully give us some answers.

The downside of steroids is the insomnia it brings and the EATING....Grrrr....I am already eating far too much and not doing any exercise but this is taking (or eating) the biscuit.  That's why I try and avoid steroids wherever possible, but I have to admit they are helping alleviate some of my stomach discomfort.  But on the downside they are making me gain weight, a LOT!

Scanxiety

They managed to get an urgent CT scan booked in, so I had that on Thursday evening.  I should get the results in a week's time, so keep everything crossed for me.  Although, there is fuck all I can do about what the results are going to say, so I am going to try and enjoy the coming week as best as I can.

Ready to be scanned

Cannula, my favourite!  In first time though....phew

Eurostar faff

Tim has next week off and we had booked to go to Brussels and Bruges on the Eurostar (as I am unable to fly due to having my PICC line), but with everything that's been going on and potentially going on, I just haven't got the mental or physical capacity to deal with that sort of trip at the mo.

We emailed Virgin Trains and explained the situation - we'd bought Advance non-refundable tix but thought it was worth a punt to see if we could get our money back.  They were amazing, responded really quickly and refunded us. Ace.

But to Eurostar.  They sent back a perfectly pleasant email but it just stated the 'rules' back at us, ie. the tix were non-refundable but we could change the dates of the tickets for £40 each (they weren't even going to off us that for free!!  Jeez...I mean, in the circumstances, you think they'd offer something right??)

So I decided to take to Facebook. I wrote a perfectly pleasant but 'I am disappointed' message on their page.  Then a number of my friends got behind it (without me asking) and the next thing, one of my friends Dave had also Tweeted it out as well.  The power of social media eventually worked and after two days of 'haggling' and explaining how disappointed I was, particularly as Virgin had been so accommodating in the circumstances, Eurostar agreed to give us a refund, so at least that isn't money down the drain.

Bizarrely, when my oncologist said 'enjoy this 4/5 week treatment break' (hence why we booked the trip), in no way did I think it was actually going to be one of the worst periods of time I've had with secondary breast cancer so far.  The mental anguish of not knowing what's going on, what treatment I may have, or even if there is any treatment available now is an absolute head fuck, and I'm also still really fatigued.  Honestly, I think I felt better when I was on chemo, and that's saying something.

And to let you all know, then nail infection has now gone, but all of my nails are now separating from the nail bed and I'll have to be so careful not to pull any of them off... oh, the joys!!

Gross!

Ring the changes

In other news, I was so excited that Lisa Eldridge (my make up guru and friend), so, so kindly gave me one of her 'Kate' rings to mark the end of my chemotherapy treatment.  I had bought the 'Eva' ring (named after Eva Green) over the summer and mentioned to her at the time that I was planning on buying the Kate ring (named after Kate Winslet) when it was back in stock.  I then got a call from her assistant to say that Lisa wanted to gift it to me.  I am so, grateful, it is absolutely beautiful.

The Kate

Kate and Eva together

A lovely message from Lisa

Oh, and I've treated myself to a pair of Stella McCartney Stan Smith trainers....they are ridiculously expensive, but who cares....I totally live in jeans and trainers and have worn Stan Smiths for years...can't wait for them to arrive. 

Press

Susie and I have also been asked to be part of Breast Cancer Care's Breast Cancer Awareness month campaign with Accessorise who are launching a friendship bracelet with proceeds going to the charity.  We have been interviewed for a blog so keep your eyes peeled to Facebook's Breast Unit Events page as I'm sure we'll be sharing it on there.  Don't forget we're on Twitter too.

Breast Unit Events

Oh, and we may be announcing news of our final Snow Ball soon too.....(well, it will be the 'not so' Snow Ball as it will be in May next year, as we deferred it from it's usual December slot due to me going through chemo). EXCITING!!!


This blog post is dedicated to fellow Breast Cancer Care Show model Laura, who not only was diagnosed with breast cancer at 23, but earlier this year was diagnosed with a benign brain tumour and earlier this week, on her 28th birthday, was diagnosed with skin cancer.  I mean....what is that about?? Life is so, so sodding unfair to some of the most beautiful people.  Here's to you Laura (and thank you for my gift this week too, you are such a selfless and wonderful person). Big love sweetheart.

Until next time folks. xx

ps. I've not even had a shower yet and it's 4pm....don't you just love weekends!! hahahahahaha.

Accident and Emergency

The fun never stops....

....when you're a patient with incurable cancer.

Here's what's been happening over the last couple of days. Sigh. 

https://youtu.be/D5050rM7T8Y

(YouTube vlog)

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

Here we go again....

Chemo update

Bognor last weekend (see PPS at end of blog)

Tim and I have been to see Dr A today.

Thankfully, despite looking hideous, my fingers are much better (I'd say about 80%)... Well I can open a tin of beans*/beer* (*delete as appropriate).

The 'altered sensation' (a cross between numbness and pins and needles) at the end of my fingers is loads better, and apart from my left thumb, it doesn't really feel like my other nails have been trapped in a door.

To be fair, they look a lot worse in 'real life' - really black and horrible

Dr A felt my left thumb to check for any infection, as your nailbeds can get infected quite easily, and he said if there was any pus or oozing to let him/the team know and they would get me on some antibiotics! Nice.

He said that he was happy to put me back on the chemo but was going to give me a reduced dose so that the pins and needles don't come back as badly. He also said to keep the chemo nurses up to date each week so they can monitor the situation and if I have any concerns to get in touch with him (which was really nice).

He asked again how many treatments I'd had and when I'd had a break.  I reminded him that it was 12 and that I hadn't had a break prior to my finger issues.  He looked at the previous dose that Dr P had put me on and did say that he had found that Dr P had 'stretched' people in terms of dosage.  So I think he was saying that maybe I should have had a break before the damage had started.  Oh well.

Then Tim asked, all being well, how many more sessions I was likely to have. Dr A said it was likely to be 'about' another six (so the original 18 discussed).  He said some people only ever have two or three treatments as the side effects are terrible for them straight away and can't be tolerated, but then he knows of another patient of Dr P's who has been on it weekly for THREE YEARS as she doesn't get any side effects from it at all.  Wowzers.  But he said 18 is about average, and there is a possibility of stretching it to 21 or 22 but it's all about the 'quality of life' as I mentioned in my last blog.

There was then the discussion about bloods.  I said I'd had them done yesterday by the district nurse and he checked them and then 'oh'.  'Oh', is not a word I like in this context!! He said my (pesky) ALT levels had risen again.  Bloody ALTs - they have been the issue all along.  This is really worrying me if I'm being honest as I'm concerned that they are the ones that will just keep rising and rising no matter what treatment I'm on.  But he did say, 'well we've just had another CT scan and that was ok' so he is happy for me to carry on with the treatment and we'll keep monitoring the liver levels as normal every week.

So the fun continues tomorrow with chemo no. 13. I have to admit that it's been really nice to have a few weeks off as I've generally felt much better, but on the other hand, bizarrely enough, I want more chemo to try and get these tumours shrunk as much as possible!!

Thanks for sticking by me folks.

This is proving to be pretty tough all round!

Love from me. xx

ps. Thanks to Marilyn for coming over to say 'hi' to me at the front of the hospital today while I was waiting for Tim.  It is so nice when people recognise me from my blog and I just hope that it is insightful/useful etc etc for you all. xx

pps. Tim and I did get away for a few days this last weekend - we stayed at my wonderful friend Anne's house in Aldwick near Bognor.  We had a lovely time, just to two of us, eating lots of chips, walking on the beach every day and just taking time to be away from the hum drum of all this shit.

Calm

Us

Yep I whipped his ass with three holes in one - boom! (That's not as rude as some people might think it sounds!!)

Hot fuzz

What a nerve

Thought I'd give you guys a bit of an update on what's happening in case you don't follow Breast Unit Events on Facebook or Twitter.

Last week's chemo was cancelled not long after I arrived at Rowan Suite with Susie (in matching t-shirts and Minnie Mouse ears that she'd bought. Oh, what's occurring?? ...totally ace). 

Oh!

Ready to go?

Er, no #chemoiscancelled

As normal I was asked by the chemo nurse about my side effects in the past week and I mentioned my fingers.  For the last few weeks they have been hurting (like I've had my fingers trapped in a door) and also a cross between pins and needles and numbness.  My nail beds have risen and my nails are turning a black colour. NICE.

I mentioned it last week but they didn't really pay much attention to it. Anyway, this week's nurse wanted to run it by the oncologist who was at the suite that day, just to check it.  She called him and popped back over. She said they had suggested that chemo is cancelled for the week because there is the possibility of permanent nerve damage.  I was warned that I could get neuropathy (nerve problems) but I hadn't been told that it could be permanent!!  Bizarrely it was due to be chemo 13 as well, unlucky for me!  The nurse also booked me an appointment with my oncologist, Dr A, to discuss it in more detail.

At first I was disappointed I couldn't go ahead with the treatment, but then I thought, 'well I certainly don't want to have permanent damage'. Tim and I are also coming to realise that planning anything going forward is going to be very difficult as I just don't know how I'm going to be and what treatment is or isn't going to be happening.

In all fairness, it was almost 'good timing' that I had that week off chemo as the weekend was full on (see 'Into the Wilderness' below) and then this week we've had Scarlett down for a few days, the beer festival and the Worcester Show so I've needed as much energy as possible!!

Out for dinner with Scarlett

and Juney and Gords (and Tim who is out of shot)

Walking the dawg

Awwww

One of the only pics of the beer festival, late on, in the music tent!!

Watching my choir, Got2Sing at the Worcester Show (I even nipped into the back row to sing a couple of songs)

Rainy Worcester Show

Tim and I went to see Dr A last Monday and we discussed my fingers. 

He said 'with 'palliative' chemotherapy it is about quality of life, and if it is impacting on your quality of life then we may either reduce the dose or stop the chemo altogether'!!  I was a bit shocked at this, and wasn't expecting it.  Firstly, when he used the word 'palliative'....it was awful.  I mean, I'm not stupid, I know the treatment I'm having is no longer trying to keep cancer from coming back but is a means of keeping me alive as long as possible, but when people use such words, it really hits home.

Secondly I was surprised that I may not finish the course of chemo.  I've had these 18 sessions stuck in my head and have been facing them with gusto and wanting to plough through them and get them done and under my belt, but, understandably if the chemo is going to mean permanent damage, then I really do need to balance the risks and benefits of the treatment.  Jeez. 

I think because I completed my previous chemotherapy ten years ago (despite it being total pants), I feel I will be letting myself down if I don't finish this course, especially as know it has started to shrink the tumours somewhat.

So I'm feeling a bit shit about all that. 

We agreed that I would have another two weeks off and will see him after that to see if my fingers (and toes, which are numb) have improved.  I did ask Sue (my bc nurse) later on whether other people haven't finished their full course of paclitaxel, and she said 'yes, quite a few'.  Also I've had no break at all whereas many women have three weeks on and one week off, so I should probably cut myself some slack and realise I've done really well to get 12 done in a row.

Giving cancer the chemo finger!

While we were at the appointment there were a couple of other things I asked him about as well. 

I wondered if I needed mammograms anymore.  He said no as I'm having regular CT scans and they would pick up any new potential breast tumours, which, bizarrely means that I will no longer have a reason to the Breast Unit that I have raised so much money for.  Although saying that I am hoping to make use of the complementary therapies on offer which are funded by the money Susie and I now raise (along with everyone else who raises funds for the Unit).

Also the chemo nurses have told me that my ALT levels (which are a liver enzyme) have been rising again.  This is worrying me.  I mention it.  Dr A says 'let me worry about that' and no more was said, so who knows what that means...probably that we'll do something about it when it's getting 'too high'...all I know is that it's rising.  This cancer shizzle messes with your head I can tell you!!!

I've now got an appointment to see Dr A again in w/c 20 August.  That was my original 'week off' chemo that we'd previously talked about and when Tim and I were planning to go away.  It's a good job we didn't book anything that we couldn't cancel.  The good news is, we had booked something, where we could change the dates. We are staying at a friend's house down by coast so we'll be able to go away for a few days after all. Yay.

Into the Wilderness

When I say last weekend was full on, I mean it was festival time. 

Tim and I had seen that Chic were playing at Wilderness Festival in Charlbury, Oxford.  We love Chic and Nile Rodgers.  We saw them for the first time at the Moseley Soul, Funk and Jazz festival about four years ago and were really keen to see them again.

I contacted Wilderness Festival to see if they offered day tickets as I knew I wouldn't be able to manage a whole weekend.

They said they didn't but as a special exception to me they would grant me a day ticket so that I didn't miss out and Timmy could come for free as my carer.  Yay.

We took a LOT of hand gel, wipes, tissues etc.  Need to be careful with infection while on chemo, especially with festival toilets!! hehehehe.  (Although, saying that, all the toilets were really clean!)

Anyway, what a totally fab day.  The sun was scorching and I was covered in Factor 50. 

Beer

Taking in some shade

This guy was brilliant

The one and only

Some rock and roll

Stag

We had trouble finding the Accessibility car park etc at first as no one seemed to know where it was...but eventually we were sorted, got our wrist bands and headed into the festival.

Crikey, it was probably the most middle class festival I've been to, but that made it even nicer.  There were no groups of 16 years olds getting off their tits on drugs and booze and walking around vomming everywhere (which I've seen at festivals before...nice).  It just had a really nice atmosphere and the emphasis wasn't just on the music but everything else they had to offer, which was loads.  Including some wonderful food - I mean, even Ottelenghi had his own tent.  And Benedict Cumberbatch and Olivia Colman were there in the 'Books' tent. (I didn't seem them BTW as they were there on Friday and we were there on the Saturday, but we did walk straight past Jo Whiley).

Just before Chic

We saw some great music, including a guy called Matt Woods, who had an amazing falsetto.  But apart from Chic, the highlight had to be me performing in front of 1000s at the hip hop karaoke.  Most people who follow Breast Unit Events will already know this!!

When Tim and I lived in London over ten years ago, we went to the hip hop karaoke night a couple of times, but were never brave enough to have a go ourselves.  Then, about four years ago, I was on a night out with Tim and our friend Nick in Birmingham and we saw a flyer in a pub saying that hip hop karaoke was on tour for one night at the Custard Factory.  We headed over there.  It was pretty quiet, only about 30 people, so I thought it was my chance and put my name down to have a go.  I did, and really enjoyed it (you can see that performance here). 

So when I saw the h-h karaoke was going to be at Wilderness, I thought I might have some of that.  They were on between 6.45-8pm, so when Tim and I finished watching one band, we headed over to the Atrium stage and there was a small queue at one end of people signing up, so I headed straight over there and I didn't have time to chicken out.

Some of the people who got on stage were absolutely phenomenal, no lyrics and rapping like maniacs, then it was my turn.....  I'd had such a dry mouth beforehand, but I thought 'who cares..... And it was amazing.  The smiles on peoples faces and looking out to an immense crowd in the heat of the early evening during a British summer heatwave is something I will never forget.  Sooooooo much fun. So glad I did it and so glad that Tim filmed it.  You can watch in on YouTube by clicking on here. Enjoy!!  I did!!  I should also mention that I was sober.  I'd only had one pint.  That girl's got guts I can tell you!!

Getting ready for hip hop karaoke

Done it...coming off stage

Some other hip hop performers...too cute.

Fuzz away

This week I have also asked my hairdresser, Claire, to shave my head again.  It had started growing and some of it was quite long but it was very patchy and most of it was grey/silver and it really made me look like a cancer patient, so I decided to go smooth again and I feel much more confident with it now.


Right, I've rambled on enough so that's it for now folks.

Hope you're well well.

Much love. xx