Hair today, gone tomorrow

THE Head Shave

Wow, wow, wow....the love and support and donations I have had for my charity head shave have been absolutely unbelievable.

I can't tell you how incredibly humbled I feel to have touched the hearts of so many to want to donate to two causes so close to my own heart, the Worcestershire Breast Unit Haven and St Richard's Hospice.

What turned from a 'shituation' (ie losing my hair) to something that will help others, is fab.  I mean, I even had a donation from someone anonymous in the Falklands....that's some geographic charity appeal right there!!

A massive thank you also goes to Claire (my hairdresser) for doing the head shave for me (check out her website and Facebook page); to Tim for filming; and to Susie and Jenn for taking photos, taking the piss (just kidding), giving me Dutch courage and loads of support.

As promised, here is a link to the video of my head shave.... I am now coming to terms with being bald again (but at least I won't be waking up to handfuls of hair on my pillow tomorrow morning).  I think the dog still recognises me??!!

Of course, it's still not too late to leave a donation if you'd like, now that I'm living a bald life!!  Here is the link to my sponsorship page. Thank you so much.

https://uk.virginmoneygiving.com/KateButler8

https://youtu.be/93h7Jc5c-oE

On the radio

Did you hear Susie and I on BBC Hereford and Worcester this morning?  If you didn't, here is a link to the programme (we are at 36 minutes 30 seconds).  It was great to go into the studio to talk about my head shave.  Suze came with me for moral support and I was so glad she was there as I broke down while talking about Timmy.

But, funny story, when we came out of the studio, the producer said goodbye to us and then said to the receptionist, 'oh, we're expecting two dogs in now' - he then looked at us and said 'oh, I mean actual dogs' as we were giving him a look and calling him cheeky - we literally wet ourselves...it was so funny (maybe that's funnier in my head than on the blog, but I know Suze will be laughing reading this!!).

Wiggy

Also this morning, two wigs I had on order arrived from Hot Hair - they are both 'fun' ones.  One in lavender and another in black and purple.  If you're gonna do it, do it in style....

I'm not sure what I'm going to wear this time.... Last time I didn't wear the NHS wig I chose, it looked far too 'wiggy', so I mainly went with sort of chemo turban head coverings (is the best way to describe them - you'll know the ones - the ones that scream 'I am a cancer patient'), but it was during winter so I was wearing a hood or beanie to keep warm a lot of the time anyway.

But this time I have bought a proper Boston Red Sox baseball cap and a floppy summer hat too.  I don't want anyone to crash their car as they're rubber necking to look at me in all my no-hair glory whilst I am out walking the dog (when I have the energy to do it!!)

To be honest, I haven't got the headcoverings I had before, I think I gave them to someone else.  Was obviously hoping I wouldn't have to use them again. Bugger!  Susie still has hers though and is lending them to me.

In other news.....

Dr P

My lovely oncologist, Dr Price, will soon be leaving.  

I have my last appointment with him on 11 June.  He is retiring to Bermuda (why the devil not I say).

Tim and I will both be very, very sad to see him go.  We had struck up a real rapport and he is so 'on it' and he's a breast specialist too and who knows if my new oncologist will be!  He is also a great believer and researcher into clinical trials (most of you will already know about my clinical trial debacle), and I'm hoping the new oncologist will be as 'on their game'.  

I have no idea who it will be.  They haven't recruited a replacement yet (as these things take time).  It might be a locum for a while (!!! bloody great - someone who has no clue who I am and my history) or it might be shared around the other oncologists that work out of the Rowan Suite at Worcester.  Mind you, the clinics are already crazy full so goodness knows what it will be like if that happens.  I'll keep you posted.

BRCA (aka the 'Angelina Jolie gene')

Earlier this year (January), mum and I met with the genetic counsellor at the hospital to discuss the possibility of genetic testing.  It is something we explored back when I was originally diagnosed in 2008 but at the time it wasn't considered there was a high enough possibility of a genetic link so we weren't tested.

But things have moved on a lot in the last ten years.....

For those who don't know, mum was diagnosed with breast cancer exactly five years before me (Sept 2003).  Thankfully hers wasn't aggressive and she had two operations and a course of radiotherapy and continues to be cancer free (thank goodness).  However, we are quite a 'cancery' family - my nan died of stomach cancer during my finals at Uni (possibly related to the fact she smoked for her whole adult life), and my Uncle sadly died of it too just a few months after Tim and I got married.  There is also some cancer in the wider family.

For mum and I our main concern was Scarlett.  

There is only a 5-10% chance of having the BRCA (amongst others) gene, which give a high predisposition of forming breast and ovarian cancer.  This is the 'Angelina Jolie' gene and, as we know, she has taken the decision to have preventative surgery with breast and ovary removal.  But because mum was only 55 when diagnosed, and I was only 32, it made sense to get tested.

The results were received last week (it takes months) and I am thrilled to say that neither mum nor I carry the gene, so as mum said 'we're just really unlucky' in the fact that we both got breast cancer.  But the main thing is that Scarlett isn't at any additional risk. TFFT.

PICC line

So the PICC line has currently been a god send in terms of having the chemo and avoiding cannulas, however, it doesn't play ball as much for the District Nurses who have only managed once (out of the four times I've seen them) to get blood out of it.  I am therefore still having to endure weekly blood tests, and to top it all off, they are in my right arm (which I shouldn't have blood taken out of because I've had lymph nodes removed)....it's so sodding frustrating.  The chemo nurses manage to get it out each time, but for some reason it doesn't play ball at home with the DNs.

Chemo frustration

I have been up and down with the chemo.  And I am so BORED, which is not like me.  It's because I can't do as much as I would like (and I'm not going out of the house too much to try and avoid catching infections).  I don't seem to be able to read, watch too much crap TV, do any gardening, even walk the dog.  I can't get motivated to focus on anything...and there is only so much Instagram and Facebook I can look at in one day!!

It is so incredibly frustrating and this will be my WHOLE summer.

I've had some friends over for coffee and lunch and stuff, which has been totally ace, but it does tire me out afterwards.

I'm usually not too bad on Fridays and Saturdays, then Sunday to Tues I have a bit of a low patch, then Weds I seem to perk up again.

I'm also not sleeping well at all.  Hot flushes seem to have come back with a vengeance and while I manage to fall asleep really quickly, I wake up when it's dark and am usually still awake when it's getting light.  That is also boring!  My mind is going ten to the dozen and I try relaxation techniques but my mind goes wandering again. Sigh.  It's also really warm in our bedroom, despite having a fan, so I have been decamping to the spare room and Tim wonders where on earth I am in the mornings!!

However, I am very grateful that I am not getting any nausea or sickness.  So I still get a horrible taste in my mouth most of the time, my legs feel heavy, I am dehydrated, my head itches, I feel woozy and tired, BIG appetite (#jabba) and those are my main symptoms so far.

Also, I can't believe I have chemo on my birthday next week. What a way to celebrate turning 42!

Sigh.

Until next time.

Thank you again for all of your support. xx

ps. Don't forget : In support of #chemohead - Twitter, Facebook, Instagram.... Let's see those bags!!

Round 1

Here we go.....

Just thought I'd give you a quick update on how it's all going.  For those on Facebook, I do post updates on Breast Unit Events (which is a community page which anyone can look at), so feel free to follow on there....

Anyway, the actual chemo day wasn't too bad at all.  The sun was shining.

Timmy and I got there for 10am but my drugs weren't ready so we didn't get called through until about 10.40am.  Helen, my nurse for the day, said that they would get the pre-meds into me while waiting for the main drug.  So they started me with piriton (which is to prevent an allergic reaction).  No word of a lie, as soon as the piriton went in, I felt immediately VERY sleepy - it was immediate.  Clearly I know what to take if I'm struggling to fall asleep in future then....anti-histamines!!  I was then given a large dose of steroids and anti-ematics to help prevent sickness and nausea.

I felt a bit of cold going through my PICC line but nothing too much.  Then, the main drug was administered and that took an hour to run through...I needed a wee halfway through so had to drag the drip and drugs with me to the loo.

Bonus though, there was a lady in the chemo suite offering hand and foot massages so I had a hand massage.  It was lovely.  I was also offered lunch so had a tuna sarnie and some orange juice....things have certainly changed since I first went through chemo 10 years ago!!

I had brought a thermos of tea, but it tasted vile so Timmy had gone to Costa in the hospital entrance and bought us both a hot drink and some cake. Ace.

I was the youngest in there (as before) until this young lad came in with either his sister/girlfriend/friend - he looked like he was in his early 20s and also looked absolutely petrified, bless him.  My heart went out to him.

I was done by 1.30pm as my drug had run through and then I had some saline put through and then my PICC line was taped up again and we headed home.

We took the dog out in the afternoon as I want to try and keep doing some exercise where I can.

I even had an appetite and had quite a big tea.

BONUS - overnight  = no sickness.  Yay.   I had been given steroids to take at home and additional anti-sickness tablets if I needed them and something to prevent acid reflux (which is another side effect).

So here's a run down of my side effects so far....  No sickness or nausea (YAY), some constipation from the steroids (but not too bad), felt woozy for first couple of days, dehydrated mouth, itching on the tops of my cheeks, metallic taste in my mouth (which now means that tea tastes vile - boo), legs feel like lead, and tiredness.

And that's where I am....I managed to do a few normal things over the weekend - singing masterclass, visiting the Malvern Show, watching Eurovision with friends.  I've not had any booze for the past week (apart from a sip of Tim's wine)....I know my liver needs all the help it can with working the toxins out of my body from chemo so if I'm filling it with booze toxins it's not gonna help.

Head Shave

The next big side effect of course is going to be the loss of my hair.  I have to admit, this time I'm struggling with the thought.  I really embraced it 10 years ago, but this time there is an awful inevitability about the whole thing and I'm wondering if I'll reach a point where I'll ever be able to grow it again etc etc...  So I have decided to try and own it as much as possible and do something positive with it.  I've therefore set up a donation page for a charity head shave which I will get Tim to video.  If you'd like to chuck a couple of quid for the two causes I'm raising money for, St Richard's Hospice and the Worcestershire Breast Unit Haven, then I'd be most grateful.

I have been simply blown away by the generosity of people so far.  Amazing. Thank you.

https://uk.virginmoneygiving.com/KateButler8

Mental health awareness week

Finally, I just want to remind everyone that it is Mental Health Awareness Week, something very close to my own heart.

I have been dealing with anxiety and panic attacks since I was at middle school and started counselling for this when I was 21 and have been on and off with counselling and cognitive behavioural therapy (CBT) ever since, which has been a huge help.

Just know there is ALWAYS someone to talk to...don't let you inner demon/critic or outer critic (if you're being bullied) get their own way....talk to someone - it's the first step.  It could be a friend, teacher, colleague, or charity (MIND, Samaritans, Macmillan etc).  Don't compare yourself to others in a social media world....most of it's fake anyway.  Learn to love yourself.

Stay safe. xx

Don't panic Mr Manwaring

News just in....

Literally walked through the door from an afternoon at the hospital.

Quick run down....

• They managed to get blood out of my PICC line (wahooooo)
• ALT liver levels were about the same as those taken last Friday
• ALT liver levels are NOT worringly high (even if 'normal' is 40, Dr P isn't too concerned about them being at 100)
• Dr P is very disappointed I can't go on the trial and they had called the trial directors to see if they could 'let me in', but they won't
• My 'new' chemo starts tomorrow....it's the weekly Paclitaxel (which is the 'normal' drug that is run alongside the trial drug)
• I am scheduled for 18 weekly sessions each Thursday (but it depends on how I am and my blood levels)
• Paclitaxel is the 'gold standard' drug....fingers crossed ey?

Right, so here we go, 10am tomorrow morning....

What a week so far!!

EXHAUSTED....

STOP PRESS

It's not happening

I am literally beside myself.

I have just taken a phone call from the drug trials team telling me that my liver function (from my blood tests last week) is through the roof and is way above where the trial will allow it to be.

Therefore chemo is cancelled and I won't be able to go in for the trial AT ALL.

My oncologist is in Bristol today so I can't even see him until tomorrow at the earliest where I've got to just rock up in the afternoon and hope he can fit me into his clinic so he can look at the other options for me in terms of chemo.  Also I'll need another blood test tomorrow to check things out again, and they hope they can get me in later this week into the Rowan suite for whatever Dr P agrees to put me on instead.

I am absolutely shitting myself as my liver function should be at an upper limit of 40 but is over 100. Apparently, my liver function was 82 when they took my bloods a couple of weeks ago to see if I was eligible for the trial - and I should have been rejected at that stage as the upper limit for the trial is 80, but someone in the trials overlooked that!!  Therefore, I have been on no active treatment for a number of months now as we know that the hormone treatment hasn't been working, so that means everything is growing inside me and there is nothing trying to stop it, and now this has delayed things even further.

I am panicking. I am in a right state.  What if my liver is too far gone for them to do anything about.

I'm not religious, but pray for me.

Would you adam and eve it?

A picky PICC

This week the hospital appointments have been fewer but not necessarily any less stressful.

I had the joy of my PICC line fitting on Friday, thinking it was going to be the answer to a lot of problems and to help reduce my stress levels regarding cannulas and blood tests.

I wasn't that nervous about it until the morning of the procedure when I then proceeded to shit through the eye of a needle with nerves before we got to the hospital at 9am. Then I had to go again when I got there... jeez. 

I was actually feeling worse about it than last week's biopsy for some reason.  It's done in the interventional radiology department (ie. where they conduct CT and MRI scans).  We were waiting for about 10 mins in the waiting room when we were called through.  We sat behind a curtain and the nurse came to say that the consultant was on his way and that I would need to get into a delightful gown.  I got changed and Timmy and I sat there.

The consultant arrived and asked 'do you know what's going to happen today?' to which I gave him a quick run down of what it involved...if you don't know these things then they go through it for you.  He said, 'if it gives you any piece of mind, it's our easiest procedure in this department'.  Piece of piss then right??

He asked if I had any questions and the only one I had was 'will I feel it being threaded through my arm?' and he said he couldn't answer that as some patients had said they could feel it and others said they couldn't. I signed the consent form. The nurse also said to me that it would look very clinical in there as they obviously have to be careful with infection control even though it's a fairly minor procedure.  The consultant went in to check everything and then came out to say there was a delay as there wasn't any hot water and he obviously needed to scrub up beforehand!  No hot water in the hospital? Wowzers.

Anyway, I said to the nurse that I needed to go to the loo again and she had to come with me as I was behind some doors which you can only get through if you have security access.  The only trouble was, my stomach was in a right state and so I was in there for quite some time.  Also, the toilet was already blocked and then I proceeded to make that worse and it nearly overflowed when I flushed it... I was finding the whole thing incredibly stressful and embarrassing.  I apologised when I finally got out and she said she would call the maintenance team.... Leave your dignity at the door when you go into hospital.

Then in I go to the radiology room.....  There were quite a few people in there.  Emma was my main nurse (and the one that talked to me throughout the whole thing).  I was so nervous I had verbal diahhorea as well as actual diahhorea (what a great day).  

I had to lie on the table and have monitoring put on me to check my obs.  I had to put my left arm on a table that was attached to the side of the bed.  The bed was brought up quite high and readjusted a few times.

My arm was then ultrasounded so he could find the vein that he was going to go into, and then I had my arm covered in iodine (which was cold) and I had a sheet over me. They told me that the machine above me would also come very close to my face as it was used to take some radiography pictures to make sure the PICC was in the right place.  They were right, it was very close to my face and I had to turn to the side and close my eyes as it was a bit daunting.

Then I had the local anesthetic, which was really stingy again, and he started putting a lot of pressure on arm.  I had to hold my breath a couple of times in between chatting to Emma the whole way through.  He asked me to to stop talking at various points as he needed to ensure that the catheter was going through the vein (it actually goes right up your arm through to a vein near your heart...weird).

The camera was brought down a couple of times.  Once when I had to take a big breath it was the part when it was pushed through my vein and, in answer to my question of him earlier, I couldn't feel it.  He was then wiggling things around while I was still chatting, and then the words....'I don't want to worry you but....'  followed by 'it's in, and in the right plac,e but I can't get any blood out of it' - YOU HAVE GOT TO BE SHITTING ME??

He tried a couple of times and then also double checked that things can be put into it, so he put some saline through it and also some contrast dye, both of which worked and double checked the positioning again.  He was happy with everything, so he got me to cough and wave my arm around (as sometimes that can help), but it didn't. Oh jesus.  He said it might be stuck against the vein wall and when I got moving it might start giving blood.

Then it was over and I had it cleaned and dressigs put over it.  I thanked him and Emma led me out of the room back to Timmy (who had heard what was going on through the door) and I got changed.  I was then given a little piece of card which explained which PICC I'd had fitted and how long it was (55cm in fact) as the district nurses need that info so that they can know how much solution to flush through it.  They have to be flushed once a week to make sure there is no infection or potential for blood clots.

I was feeling down as we headed back up to Rowan Suite as I couldn't believe that, of all people, I was going to be the one whose PICC line didn't give blood....that was one of the main reasons I had it as, reader, you know how knackered my veins are for blood and how much I hate having blood tests.

Ready to go in

Before

After!!

Pre-chemo chat

Back on Rowan suite I signed in and not long after I was called through by Mandy, who is another one of the chemo trails nurses.  She was really nice.

She had to check the PICC line to make sure it was ok for chemo.  I'd told her my blood issue and she tried to get blood out of it herself (again with me coughing and waving my arm about etc), but to no avail....by this point I felt really glum about the whole thing. Why had I bothered going through all this?

She said there were other patients this had happened to and within a couple of hours their PICC lines had started giving blood...I just had to hope I was one of those pepole.  But, ironically enough, I then needed to have bloods taken as I was starting my chemo a few days later and they needed up to date tests, so she had to do a manual blood test in my right arm.  FFS!!! To be fair, she asked if she could take it from my left hand, but I said 'no' - I had already been through enough stress that morning and couldn't face having a blood test out of my hand.  I did ask at how much risk of lymphodema I was, as it had been 10 years since I'd had my lymph nodes removed (which is why I'm not supposed to have blood or blood pressure taken from my right arm) and she said it was unlikely to happen as it had been so long since the node removal.  Let's bloody hope so as now I'm going to have to have both bloods and pressure taken on the right arm as my left arm has the PICC line in it. Sigh.

Anyway, here is a run down of everything else she said (from what I can remember)...Some of this stuff I already knew from my previous chemo 10 years ago, but for those who don't know much about chemo (and why would you), here goes....

• My biopsy result showed that I was HER2 negative.... this really disappointed me as I was hoping it was HER2 positive as there would have been many more options available to me if that had been the case...
• I will be on the actual trial drug (cabazataxel) which is given once every three weeks (so at least if I do have to have my bloods taken manually it will only be every three weeks, rather than weekly, but still....)
• I will have six cycles of chemotherapy (18 weeks)
• I have to keep a 'side effects' diary so that the trial team can use this in the research
• The chemo drug is made from yew trees
• The drug attacks the good cells as well as the bad ones which is why you get awful side effects
• I can get terrible mouth ulcers and differing tastes
• I can get horrendous fatigue
• I can get nausea and sickness
• I can get constipation or severe diahhorea 
• I can get tingling in my hands and feet
• I can get nausea and loss of appetite
• I will start losing my hair pretty much straight away (I knew this from before when it started thinning after about four weeks) - I had the offer of a cold cap (when they freeze the top of your head while having chemo so that your hair follicles don't die), but I know people who've had these and they don't work that well and come with their own horrible side effects
• There are a whole raft of other side effects, but these are the main ones
• I will have an injection in the stomach every day for seven days each cycle (I will be able to self-administer these as I have done this before when I was going through IVF) which is to help prevent infection as my white blood cells will all but disappear for about 10 days after each chemo treatment
• If I get an infection or temperature of any kind, I have to let the team know straight away as it could kill me as I will have no immune system, so I would be taken into hospital and given IV antibiotics
• I have a special form which I can take to A&E if I am ill over the weekend when the Rowan suite is closed which means that the A&E team have to give me IV antibiotics within 30 mins of arriving at hospital
• If I need to be admitted, Worcester hospital now has oncology beds (which they didn't when I was going through it before, so I had to go to Cheltenham)
• There is a 24 hour chemo helpline number to call should I have any concerns or not feel well
• I will be given anti-sickness drugs before the chemo to help prevent sickness (previously these drugs were under licence and very expensive so they could only give a limited amount, which may explain why I was vomiting after my first two cycles of chemo 10 years ago before they put up the dosage, but now the licence has expired the drugs are loads cheaper for the NHS so they give you more)
• I should plan to be in the hospital for about three hours for each cycle - the actual drugs take about an hour to administer but I have to have the anti-sickness, streroids, saline etc also put through the PICC line (some of which are before the chemo durgs and some are after)
• I will have a district nurse to visit tomorrow (Saturday) to change the dressing on my PICC line and flush it
• The district nurse will visit each week to do this

I have to keep this in my purse in case I end up in hospital for something else!

She gave me a 'blue folder' which has all the relevant info in it which I am to take to each appointment and she gave me a huge bag of dressings and other stuff for the district nurse, then we were free to go, and would be back Tuesday 8 May at 9am for chemo cycle one.

Pimp my folder....

Both Tim and I were shattered.  We got home about lunchtime and filled everyone in on what had been going on.

I then got a phone call that afternoon from Rowan suite saying that my chemo would actually be scheduled for 12pm on Tuesday as pharmacy had called them to say, as I was a new patient, they wouldn't have my drugs ready by 9am on Tues morn (cos of the bank holiday).

Out out

I didn't really want to look at my arm too much (although it was covered in a bandage) but thankfully during the week I'd bought a couple of new dresses with sleeves as Tim and I were due out for Jenn's b'day on Friday eve.  How I managed it I don't know, but I did and had fun with the crew.

Long sleeve disguise

Ready to go

The crew

Classy bird

Happy birthday Jenn

It had started bleeding through the gauze a bit on Friday afternoon before we went out and I called the hospital as it looked like quite a lot of blood and they said to go up and get it checked if I was concerned (although they weren't cos of the way I'd described it) and when Tim saw it he said he didn't think it was too bad - I'd just got myself in a bit of a tizz.

Saturday the district nurse arrived about 10.15am (they don't give you a time slot, it could be anywhere between 8.30-12 on Sat and 8.30-5pm in the week).  She came with a sharps box (which I need to keep here) and a load more dressings.

She removed the dressings very carefully (which took some time) as she said she wanted to make sure she didn't pull it out!!! Yowzers. And then took a look at it and actually said it was a very 'clean' PICC line insertion - one of the best she'd seen.  It hurt when she was holding my arm in certain places as there is a nice bruise developing underneath.  It was weird seeing it properly for the first time and actually going through my skin - it makes me feel a bit strange to be fair.

In all its glory.... the blue line is the one that goes into my vein and down towards my heart - wowzers

She also tried to get blood out of it and I was hoping since I'd been home and out and about and slept for the night that it would start giving blood - but no.  Fuck fuck fuck....She said there are some PICC lines in the community that she knows that have never given blood and I think I am going to be one of those people.  Originally the chemo nurse had said that they might consider taking it out and putting it back in again, but we'll wait and see.  Bloody stressful I can tell you.

She then flushed some sodium chloride through it and she was happy that was going in OK.  Originally she had said that if it showed any sign of resistance that she would send me to the hospital as I could potentially have a blood clot. WHAT?!   So thankfully that wasn't the case.

She cleaned it all up and dressed it again and then headed off after booking my next appointment for 15 May.

I had started to develop some pain in my neck and shoulders, and that slowly got worse over Sat/Sun so I've been on the phone to the chemo helpline and they referred it to the 'on call' oncologist who said that as long as my neck wasn't going a funny colour or hot or swollen then I should just take some paracetamol and she how it goes.  But I was to call back if it got worse or I did have any of those symptoms as it could be a blood clot. They have actually called me three times after the past two days to see how I am (bloody great service).   It is getting better now, but this morning (Sunday), it was agony (as I hardly slept last night worrying about everything), but I think a dog walk in the sunshine has helped calm me down.  Plus, I had my head turned on the side for the whole PICC line procedure (15/20 mins) so I might have pulled something!!!

Walking the dog.....helping me to relax

So here I am, bank holiday Sunday.... the sun is shining and I've been in a right state the past two days thinking about tomorrow morning as well....so just think, if you're dreading going to work tomorrow, at least you are not having to go through chemotherapy, so it's not all bad!!

I'll let you know how I get on when I can......