Check out this page on Facebook for details of a fundraiser happening now for York Breast Friends
Post updates coming soon I promise!!
Check out this page on Facebook for details of a fundraiser happening now for York Breast Friends
Post updates coming soon I promise!!
Chemo number 5 went by without a hitch – plugged in, chemo given, tea drunk, sandwich scoffed, home again – bish bash bosh
This time the Steriods before and for 3 days had been increased so I was hopeful this would help, I also started taking the pain medication BEFORE the pain started.. figure a head start never hurt anyone.
All was going well till about Day 6 – the pain was bad but bearable, hairy caterpillar was back but again I was used to that.. but day 6 evening I had developed a bit of a tight chest, everytime i breathed too deeply I had a pain and felt like i needed to cough. Also my mouth and tongue were very sore. Now I have a condition called Geographical Tongue anyway – my tongue is full of cracks and holes (which bizarely change places and move – its great for freaking people out!) but this felt different, it felt like my tongue was too big for my mouth, and even water made it sting.
By the next day it was really painful, along with my throat and ear. i knew this wasnt right and along with some gentle encouragement (or ring them or you will be in trouble missy!) from my breast friend york buddies I gave the chemo nurses a call. As expected they asked me to pop up and see Dawn the specialist Nurse
They did all the usual checks, my temperature was fine but my line and around it looked a bit inflamed which concerned them, my throat and tongue were swollen, my ear drum bulging and my heart rate too high. They sent me for a chest xray to rule out a chest infection and sent off bloods to check my neutrophil levels – however they were certain they would be OK as I was still on the post chemo injections.
The xray was clear, but my heart rate was still tachycardic..at 128 bpm, with that stupid cough, feeling a bit wobbly, sweaty and clammy and generally unwell
Finally my bloods came back.. 0.4 .. officially severely neutopenic… and that means admission!
Due to a shortage of side rooms or space on the oncology ward (you have to be kept seperate as neutopenic sepsis means you are no longer fighting any infections so need to be kept seperate) I was still in oncology outpatients at 9pm with the poor nurses who should have finished 3 hours earlier! Finally a side room was found for me for the night on an assessment ward and I was admitted.
Now remember a few weeks back I was devastated by losing my hair.. well Im over that now cos I have discovered cheap ebay wigs!!
I decided from the start that I wanted some amazing coloured wigs. My hair is rarely plain coloured and i didnt want to have to back to be a plain brunette. I took a chance on a couple of ebay cheapy wigs from china.. and they were fab.. so ordered some more!!
This one is my NHS wig – I was going out for a meal with the lovely lovely ladies from Breast Friends York – I didn’t notice till I took the selfie that I looked a bit like I was channelling Snow White!
This one was a gift from a friend!
Take that cancer – you can have my boobs but you aren’t having my individuality 😉
Cycle 4 – New chemo.. so the chemo was uneventful… day 1, and 2 no sickness – bloody brilliant I think I got this sorted
Day 3 – feeling good so I head off to a dog show with my charity buddies by 3pm OMG I think my body is trying to kill me from inside! Everything hurts. My legs and arms feel like they are made of lead but like really spiky mean nasty lead that wants to hit me over the head! I cry most of the car journey home in pain.
Day 4 I wise up to the pain and start taking pretty much every painkiller I have in the house as well as hot water bottles on my knees and ankles. but still it feels like I might possibly be dying.
And so it carried on…. for the first time ever in this whole journey I have been in tears and really wondered if I can cope with this. I spoke to Emma who explained that the injections are meant to stimulate my bone marrow to create more cells, which makes it expand but being in the bones it only has a certain amount of room which is why the pressure causes pain. At least I know why.. still bloody hurts tho
I had booked to go to Disney on Ice the week after treatment – with that second week being my “good week” – all day I debated going or not as the pain was horrendous still but mickey mouse waits for no man and with Niki to help me and the kids went. We had a fab time and it really doesn’t matter that I cried all the way home!!
I had also arranged to go away that weekend at a fab art weekend arranged by Art Workshops (link on my links page here). I am very very lucky that the team behind Art workshops are amazing and I know that they would accommodate how crap i was feeling and wouldn’t mind nor be insulted if I slept on the sofa in the bar area for an hour or so if needed. So I went and had a fab time despite being knackered and unsociable in the evenings as i was so tired – sorry girls!
Along with the bone crusher came an interesting new side effect.. the hairy caterpillar. My tongue grew a rather attractive fuzz and everything tastes like hairy caterpillars – it was not a nice taste. the doctors gave me some nystatin for it but stuff continued to taste rank – I wonder if my taste buds have had a hammering too? Maybe I should eat lots of cake until it tastes nice again?
So my ultrasound and biopsies were pretty uneventful – I have had so many lately it’s literally just a case of in top off, jelly on and a whizz over both boobs and home again (after putting top back on again obvs! nobody needs to see THAT!)
Wednesday saw me back at the hospital again cos my district nurse was rubbish. Wednesday was blood taking day – simple you would think from a line that goes direct to my heart but no – she came in tried once, couldnt so left.. despite me telling her to use the heparin as it probably had a clot needing dissolveing.I think she was in the house all of 3 minutes before telling me to go to hospital to have it done – maybe she was late for lunch or something?
So off I trundle to the Magnolia centre for them to throw some heparin down it and hey presto manage to get blood. however whilst I was there Dr Good-looking my oncologist appeared at the door – he offered to see me whilst I was there to save be coming up again the following day.
It wasnt great news. Apparently the largest tumour hasnt shrunk as much as he had hoped. In fact in direct ultrasound v ultrasound it has grown (but not in reality as it grew between ultrasound 1 and oncologist measurement.. and then shrunk slightly for ultrasound 2!) , in addition there was a few more suspicious areas that were lumps, and the biopsies showed more IDC.
Well aint that just fantastic! I’ve had 3 cycles of chemo, felt pretty crap and its done nothing! In fact im in a worse position than i was before.
Dr Heart-throb explained that this means that we need to be more aggressive – In terms of surgery it doesn’t make a difference but there are more agressive chemo combinations that might help. Ok come on Tracie sensible head on – a few more lumps in the girls doesnt make much more difference.. concentrate now.
So it looks like i’m changing to a Chemotherapy called Docetaxel (http://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/chemotherapy/individualdrugs/docetaxel.aspx)
On a plus side it doesnt seem to make people sick like the EC combination does, on the downside apparently people have reported mega pain symptoms.
I also have to increase my steriod doses – to take 8 the day before, and for 3 days after, as well as to give myself injections to try to stop my Neutrophils (white blood cells) dropping too low (http://www.macmillan.org.uk/information-and-support/treating/supportive-and-other-treatments/supportive-therapies/g-csf.html). Dr McDreamy did say I could stay on EC but then he wouldnt have felt like he had done everything he could for me.. I knew he liked me ;)!! He produced another A3 sheet of side effect warnings for me and that was it
And thats it, off I go with a new information sheet and a bag of steriods ready to start the next day.
So its official.. I look like I have cancer, I have no hair and a very visible line.. but it appears this is not enough for some people!
I popped to Ikea with Carl and the kid and we decided to have some tea there. I was suffering with side effects and was struggling a bit with raised temperatures so just wore a hat rather than a wig. whilst I was sat at the table I noticed behind Carl (in front of me) was a table of 4 adult women – they kept looking then turning away, then looking again..
After about 10 minutes of this it became really obvious they were finding me particularly interesting. Luckily (or not!) I can lip read.. although as they got louder I really didn’t need to …. loud stage whispers of “look a hat” “no hair” and “look at that thing in her chest”… now I’m not stupid.. if someone has no hair and a line in their chest you can hazard a pretty good guess at why.. but not these women.. it was obviously much more fun to laugh and point and comment on it.
We ate and left pretty quickly as I felt very conscious – looking this way is very new to me and where as normally (and have since!) I would make some smart arsed comment I really was too tired to bother. I couldn’t believe it earlier when they walked past me later on in the store and went loudly to the other “EWWW look it’s even worse up close!” NICE!! lets hope none of them are ever faced with this reality
A couple of days later my despair for people got worse as it came to my attention that someone had emailed the gofundme page that my lovely friend Rachel had set up (https://www.gofundme.com/traciesfund) to say that they had heard – via someone else – that I didn’t actually have cancer at all and it was all a big fraud.
It turns out someone from where I grew up – you know the place I havent lived in for about 15 years and havent even visited for at least 6 – had decided to inform people that I didn’t have cancer at all. Well now I have been blogging, and facebooking and instagramming right from the start. there are enough pics out there of me.. with my line, in hospital gowns etc to prove that its true. but then REALLY why should I have to PROVE it? Some people really need a life.
It prompted me to post the following picture and status on Facebook..
This is the reality of cancer. .. not the pretty pink events, or people pointing and staring, or the constant fight. .but he exhaustion, the swelling from the steroids, the pain from the chemo killing all cells regardless of good or bad, causing mouth sores, stomach cramps etc. The weight gain undoing the journey I have tried so hard to follow the last few years. The upset at not even looking like you when you look in the mirror anymore, the bloating from the steroids, the swelling from the Hickman line. It’s not one of my most flattering selfies. ..but it is an honest one… I will fight this.. do what I have to do and hopefully in 12 months or so it will all be over. Till then, and today in particular bear with me whilst I feel a little sad about the part of me that’s being lost during this journey.
This is a long hard Journey, some people make it easier just by being there – others… well the others don’t matter!
So the week of cycle three was a busy one – I had my bloods on the Wednesday and was booked for my Hickman line fitting on the thursday before chemo on the Friday
My lovely friend Emma offered to come with me to have it done. It took longer than the hour they said tho so felt guilty she was left hanging around.
It was done awake which sounds scary but wasnt – I opted not to have sedation cos I had driven myself and was pretty confident about it.
I was taken into a room and covered with a green operating sheet. they did an ultrasound to find out which way the veins were less damaged by the chemo and decided that the right side was the best option for the line. the first giggles came when he asked the nurse if she could move my breast.. she looked at me.. then him then said “well what do you want me to do with it, they don’t move far?!” it turns out he meant if was where he wanted to lean as obviously laid down and they flopped over my shoulders lol. in the end she suggested taping it to my stomach which was hysterical cos i could feel the tape slipping within minutes and at one point there was a big pop and bounce as breasticle 1 escaped its tape shackles and made a mad bid for freedom.
The surgeon made a small incision just above my collar-bone after numbing the entire area and located the artery the same as they do with a normal cannula. However he missed and was suddenly leaning on my neck pretty hard whilst asking the nurse to go and inform the other doctor there was a bit of a bleed lol. I started to cough and he worryingly asked if I was ok… I was – I confirmed – but I think you might be leaning on my windpipe too .. oops he said and moved over a bit lol.
once the bleeding stopped he tried again and got the line into my artery – they then swing a x-ray machine over you and use that to guide where the line goes as it feeds round to your heart – where it can most effectively delivery the chemo drugs – Part 1 done.
Part two is the tunnel – they numb a little further down your chest and decide where the line is going to come out. Then they literally use a little dilator to tunnel under the skin, make a small incision and pop it out. they then feed the line thru the tube and out where it needs to. It felt a bit like being drain rodded the way he pushed and shoved to get the line out – but it was sensation more than anything, no pain just an odd pulling. Then they pop a small stitch at the top site, a couple at the exit site – cover you in a dressing and job done! I had to hang around for an hour or so to check I didn’t die – hmm this hour death check seems a common theme so I told Emma to go as the poor love had been on nights and hadn’t been home yet!
I didn’t die so that was it – home with instructions that the district nurse would come weekly to flush and dress it for me.
Chemo 3 was so much easier. Instead of having someone sat there hand syringing the evil stuff I could just be hooked up to a IV line and left along for an hour and a half! As it was the half way point I was popped round to see the Oncologist for a quick chat. He had a quick feel and asked if i would mind having an ultrasound as there was a couple of “unknown areas” he wanted checked and he wanted the size of the largest tumor in my lymph node checked again so we could see what was going on. they made an appointment the following fortnight for the ultrasound (to give me a week of feeling crappy from chemo first) then an appointment the day before chemo 4 to see the oncologist.. at least with cancer you aren’t waiting around!.. yay more appointments :S