Wanting Chemo

Just over 9 wks ago I had the news that my treatment wasn’t working due to progression showing in my liver and spine.  It has been an up and down roller coaster since then trying to get my new treatment plan organised.   I thought by signing the declaration for the Trial immediately would have got things moving more quickly, but how friggin wrong was I.

Firstly I was delayed due to being admitted to hospital with severe pain caused by the radiotherapy that was given to my spine and then my oncologist said he wouldn’t give the go ahead for treatment until pain was managed and controlled.  Due to the CT Scan department taking it upon themselves to tell me that I couldn’t have the full body scan done that was requested due to my last one being just weeks ago I had to wait for another appointment to come through as it was a necessity to get onto the Trial.  Luckily, Jo my nurse was on the case and managed to get me on the cancelation list.

I had the extra CT Scan along with checking my little old brain again; which I am proud to say that I still have one.  I had the Bone Scan and the ECHO (heart Scan).  I had all the blood tests done, my height taken along with my ever growing weight and so you would think that it would just be a simple put my name into the computer to find out if I was picked for the Trial Drug or the Physicians Choice.  But Oh No!,  apparently my original tissue sample from my mastectomy back in 2007 could not be found (and is still missing) and so another sample was sent in which did not show the criteria that was needed and so I was refused from the trial.  My nurse was very apologetic and relayed all the information onto me.  Luckily, I still had the C3 vertebra that was removed in 2009 to be sent off, my nurse said that this sample should show the correct criteria of having a metastatic breast cancer that is HER2 positive, but due to timelines of scans etc... this meant that if the testing of my sample wasn’t approved quickly then my ECHO needed to be redone and so I was on the waiting game once again, but this time with the anxiety that I could be rejected from the trial.

On Wednesday 20^th June, I spoke to my nurse who said that the Trial company still hadn’t approved my sample and gave me an appointment for the ECHO to be on Friday the 22^nd.  Me being me; has to know things and over the phone asked her if the results of my CT scan were ok.  Don’t forget I have gone 9 weeks without any treatment what so ever since the last CT scan and so the anxiety of the friggin squatters getting out of control and taking residence in my lungs, kidneys or any other organ in my body were definitely a big factor that was going around inside my little old brain.   Big sigh of relief after hearing my nurse tell me that there was no further progression apart from slight growth in my liver, which to be honest was expected.  

Half an hour later and my nurse rang back... My oncologist wanted to see me, and I was given an appointment for the following day.  Cripes!! ... I was up in Yorkshire at my mum’s so had to get Lee to come and pick me up early in the morning.  My stomach was churning, why does my oncologist want to see me? Is there something in my CT Scan? Has it spread to other organs?   The mind is a very dangerous place especially when you know there are results to go through.  Lee said the appointment is probably to go through my treatment plan, and like he has done for the past 5 yrs, told me not to worry.   

That night was a terrible night, I daren’t take a sleeping tablet because I knew I had to be up early and so I tossed and turned most of the night, with the time being 5.30am the last time I glanced at the clock.  I was shattered and to say that I had butterflies in my stomach was a big humongous understatement.  

Lee was right! Come to think of it, he’s always right but please don’t tell him I said that.  My oncologist appointment was to discuss my treatment plan.  Scan results were good and showed slight progression in the liver.  No other organs affected by my bloody ugly squatters.    We discussed the loss of my original tissue sample (still not been found) and decided the treatment I would have if I was picked out for the Physicians Choice (IV chemo of Eribulin).  I also signed the consent form for the Eribulin just incase I was rejected for the Trial of TDM-1.  

Lee and I came out of there with the big feeling that the appointment was to prepare me for being rejected for the Trial.  Hense my oncologist saying, “there isn’t always enough tissue to test from a bone sample” along with having me sign for the Eribilin chemo too.  

Mixed emotions again and back on the waiting game.  I so want the TDM-1 trial drug, who wouldn’t, the results so far have been amazing and is currently being called the New Wonder Drug, on the other side what is most important to me right now is actually being approved for the trial as this means that I will be watched and monitored more closely and so any further spread will be caught early.  I have read up on the Eribulin Chemo which sounds to be another good drug too, this has just recently finished trials and has had amazing results, but... yes there is a but... if I have this one, it will mean that my 2yrs of hair growth from the last IV chemo, my staggering 2 inches of growth because the Capcitabine and the Navelbine delayed and stopped growth would inevitably fall out, turning me into the bald Kazza with the humongous cheeks from the steroids.  Whatever the outcome, treatment will commence next week.  Luckily I am approved for the trial, another obstacle over come and one obstacle to go.. Do I get the Trial Drug Of TDM-1 or not?

Monday 25^th June and my phone rings.  I know straight away who it is and answer the call with my heart paused.  Hearing Jo’s voice, I knew straight away and butted in quite quickly “I havn’t got it have I?”  Jo seemed to be more disappointed than me, it has taken what seems forever to get me on the trial and at the last obstacle, the computer didn’t pick me for the drug anyway.

Am I disappointed?   

No!   Like I said the main thing for me was to be on the trial so that I am more closely monitored, plus treatment will be given in the Research department rather than the normal Chemo Day Unit, meaning less hanging around, waiting and delays.   

Chemo is set for Wednesday at 10.30am.  I will have the Eribulin Chemo on Day 1, again on Day 8 out of every 21 day cycle.  I will also have the loading dose of Herceptin again which will be given every 3 weeks, but am hoping that because I have done the loading dose twice before over the last 5yrs that they don’t keep me hanging around for the 6 hours to keep an eye on me incase of a reaction.   For my second cycle of chemo, it is also being sorted for me to go back onto IV biosphosphonate, the bondrant tablet that I thave taken for the last 3 yrs will stop and I will have once again Zometa

Fabby Times & Fabby Friends

As you know, the last couple of weeks/months have been a bit of a yo yo, which I might add ‘the bit’ has to be the biggest understatement ever.   For those of you who don’t know me that well, this is where you will realise that I got the nick name ‘Mad Kazza’ for a reason, cos you just can’t keep this gal down.   Ok, so lately it seems all i’ve had is bad news or friggin hassle, but not anymore, cos I’m back, and all this good stuff started just a couple of hours after being given the shit news that the cancer had spread into all my bones with the exception of my 2 arms and 1 leg, when I went for the pub lunch with Pauline.

 

So where do we start with the other good stuff, Mmmm well let me think... Ohh yeah as if I can forget especially with this blog being totally based on what I am going to tell you... I received a text from a very good friend up in Scotland saying, “Hiya Kazza, what you doing Bank Holiday Monday?” with me being slow and all, totally blonde, even though I’m dark now, I text back “nowt much I’m boring, having you got anything exciting planned?”  Most of the British Population was busy organising street and garden parties for the jubilee celebrations, but Lee and I were quite content in having a lazy time and getting me fit and ready for when my new treatment starts. 

 

When you have great friends, it doesn’t matter where they live as Lulu and Gill had decided to do the Thelma & Louise Trip (a trip Pauline & I did last January), they were; get this....... ‘Driving down to My House all the way from Scotland’ now how friggin great is that.. Its more than great... it’s super duper fandabadozy frickin brilliant, and get practicing with the wine drinking time even though I’m not supposed to touch alcohol with the pain meds that I’m on.  

 

Well Bank Holiday Monday arrived, I was like a giddy youngster on Christmas Eve, Texting Lulu & Gill constantly throughout the day and then relaying onto Pauline, Gemma and Dawn, who were already at Pauline’s and drinking Vodka and Wine by 3pm. 

 

Laying back in the bath for a long soak when you have a bloody painful back, ribs and neck sure isn’t a good idea and then walking around in the exact same shape of the bath is not my idea of looking super hot on a night out, not to mention not being able to get my arms up to style the 1 inch of my extensively long hair... 90 yr old geriatric springs to mind, but at least I still had my rug as a backup.

 

The fabulous Pauline, Dawn & Gem dragged themselves round to my house by 5pm where we polished off (I think) 4 bottles of wine, whilst waiting for our Scotty Buddies to arrive sitting in the sunshine of my back garden, and of course gave us lots of opportunities for a photo shoot lol.  Dawn was half shot, Gem was totally off her rocker, Pauline to me had some catching up to do, and me!! Well, I had some serious catching up to do too, but didn’t want to overdo it in case the mix of my pain meds and alcohol didn’t mix too well.  As you can imagine there were lots of screaming and squealing going off from my back garden when our lovely Scotty Girls arrived with hugging and giggling going off constantly between sips of wine before we headed off into town.

 

 

 

I have to say that the whole evening was fantastic and sitting in an all you can eat Chinese Restaurant, complete with a scrummy chocolate fountain that we literally had to stop Dawn from going under head first later in the evening, was just the perfect place for 6 mad women, especially when we were seated at table laid out for 8.  It was the perfect setting and after we ordered 2 extra glasses and drawing smiley faces on 2 serviettes, our table was complete with our 2 absent friends Hazel MacSwan and Sharon Jenkins who sadly lost their fight to breast cancer, but will always be a part of us and be remembered always.  

 

You know, sitting, eating and drinking, I felt normal for the first time in ages.  I didn’t have any pain accept when I had to get up out of my chair and grab more food or walk across the floor to the ladies room, which I think if I had seen my reflection, I would have freaked cos I could swear I would have still seen the shape of my bath.  Serious conversation was like passing ships in the night, a rare thing as the laughter roured from us.  Lulu’s wig was going in all directions, mine I couldn’t care less if it was on backwards, and the amount we all ate, I am surprised we could fit through the doors as we left.

 

It was getting late when we left the restaurant, and headed for the pubs, stopping by at the Square Lions for a photo shoot opportunity, something that Pauline and I have to do every time we hit the town.  Normally the climbing up on the Lion is something that I have done time and time again with my kinky boots that had a 5 inch stiletto heal, but sadly since my back has gotten worse, Lee my very thoughtful hubby has thrown out ALL my heeled shoes.  Yup, all heals gone, dust binned, cappoof vanished to none existence, so not do I have to walk around with the 1 inch height loss from my spine compression, but look a dam lot bloody smaller without my heals, making me look like a bloody junior school child with wrinkles.  Every picture I tried to take of the girls on the Lion came out blurred from the jiggy laughing bit that my whole body was doing, from seeing Lulu trying to climb up on the bloody thing.  It was as though someone had smeared it with grease making it the main event of a ‘It’s a Knockout Contest’  up one minute and then sliding down again sideways the next, and at one point I even thought about charging the passersby to view the spectacle of seeing 6 nutty woman going mad with a lion.

 

Once we hit the pub, we got plonked down and took up residence for the remainder of the evening, ordering cocktails of Malibu mixed with Vodka and Red Bull and let me tell you, that Red Bull stuff really really works, and does give you wings, another one of them and I would have been doing the friggin can can off the tables and spiralling round doing the pole dancing thing in the middle of the room.  Ok, slight exaggeration there but at least my mind was working to even think about it lol, my body may not be capable of that now, but it would have been a damn good laugh if I had tried.  

 

Panic Stations.... Pauline realised that we had left Hazel and Sharon in the Restaurant.  Some hosts we were hey, having the girls down from Scottyland and losing half of em, especially when we had only been to 2 places.  Dawn came to the rescue and shouted at the top of her voice “There here in my bag” Hazel and Sharon were safe and joined us yet again for another drink.

 

Lee came to pick us up, from the corner of where we thought Lulu and Gills Hotel was, and after Lulu’s wigs did its rounds on everyone’s head and we’d hugged each other for the millionth time, Lee had the very brave job of driving us home.  Its amazing how conversations flow when alcohol is in the equation.   Poor Lee had to endure the topic of pubic hair loss through chemo from Dawn, Gem and Pauline, poor bugger, I couldn’t stop laughing and I know it had a great impact on Lee as he kept asking me which one kept talking about pubes for most of the following day.

 

I can’t believe that I had my Scotty Buddies at the wrong friggin hotel, but luckily they didn’t have too far to go and after a nice alcohol free lunch the following day my lovely girls were headed back for home.

 

 

I had a fantastic time and really appreciate Lulu & Gill travelling all that way to see me and I totally understand why they wanted to come, because I did the long 7 hour journey myself for the same reason last year.  When someone you love to bits, has news that isn’t good, especially when cancer is concerned, you panic and just have to see for yourself that they are indeed OK and not just saying it over a phone line.  I did it with Sharon, and I am soo thankful that I went through to see her as it was just 3 months later we lost our shining star.  Its times like this that you realise who your real friends are, each of these girls have stuck by me every step of the way, through the bad as well as the good, which of late seems to have been that a lot of friends have disappeared whilst I have been in a bad place.  I know I may have removed myself from them, but I stand by my decision, a true friend will keep bugging you to submission, just like my valued friends have.  

 

Thank you girls, its was just what I needed and I wuvs ya trillions xxx

 

 

Bone Metz Gone Mad !

The thing with medical reports is you just havn’t got a bloody clue what they are talking about.  Ok so we know that I have further progression, but where is the further progression.  Saying ‘Hemipelves’ to me means diddly shit, and so I was very lucky that this lovely oncologist took time with me to explain what everything meant.  Today also taught me why there are so many delays with appointment times, because even though I was 2 hours late getting in, I didn’t leave the hospital until 4pm and spent approximately one hour with my oncologist.

CT Scan (But need a new one)

I was told that there was slight progression, but to see it in writing shows me what is actually happening.  This report is compared with the previous scan dated on the 1^st March 2012.  the biggest lesion on the right lobe is 13x11mm and a new large lesion measures 11 x11mm.  So it’s not too bad, they are still small.

There is some emphysematous change in both lungs particularly in the upper lobes, which means; there is an abnormal increase in the size of the air spaces in my lungs, resulting in laboured breathing and an increased susceptibility to infection.  There is no evidence of metz.

MRI of Spine

Spinal surgery between C2 and C4 is noted with no significant change in the appearance compared with previous Scan image.  This means that my metal bionic parts are still intact.  This report states that there is Extensive bony metz disease throughout the spine including the lower thoracic and lumbar.  The appearance of disease has progressed with an increase in size and number of metz.  Degenerative changes are also present in the lumbar and a mild prosterior disc bulge at the L5/S1 vertebral level.

Whole Body Bone Scan

There is multiple additions of increased activity consistent of bony metz.  Even though my oncologist went through this with me, my brain could not hold on to the information and so with the wonders of Google I have been able to pin point where the metz are. Sites involved include; 

The skull vault and the whole of my spine all the way from the Cervical to the Lumbar.  Both Sacral Alae, Both Hemipelves including the Acetabulum, Ischium and inferior pubic bone and iliac bone, some big meaningless words there aint there to us normal none medical folk, anyone in a nut shell they are all in the hip area of our big skeleton.  There is also disease in the Left femur (top leg) in the intertrochanteric region, which is in the top part and femur head is affected, which again is all closely tied to the area of my hips.   Increased activity is seen in left coraacoid and gelnoid protions of my left shoulder and further area of focal uptake is seen at the left suborbital ridge, which is the bony ridge located above the eye sockets.  There is activity in right, acetabulum and ischium extending into the infereiour pubic remus, which again is all in the hip area.  My left sternoclavicular joint represents degenerative changes which is the joint between the sternum (chest bone) and collarbone.  The cancer has also progressed to the bilateral ribs.

So there we have it.    As soon as my oncoligst told me places, it explained to me what had been happening.  You see, I have complained about my left  hip especially over the last couple of months, and said it felt like my hip was going to dislocate, this is the side that it is in my femur ball.  Unfortuanetly CT scans just don;t show up bone properly.  Then there is the times that I have been in hospital for pain in and around my chest, I have had scans on my lungs, but maybe some of the pain that I had and defiantly the pain that I am having lately, is connected with the bony metz of the ribs.. I can’t sneeze cos it bloody hurts and I can’t cough, but yet I can take in long shallow breaths that don’t effect me, as the pain that I have doesn’t seem to feel internal.  The pubic bone area for example, intercourse has been a little uncomfortable, so again is this why.  Then there has been my latest moaning of having migranes without the headache.  No headache appears but yet my left eye, becomes blurred and I get that tunnel double vision, stars moving around like nutters, making it impossible to see due to them being right in the line of sight.   It doesn’t last long, maybe between 5 and 30 minutes, but it is so bloody annoying, especially when I can’t see my iphone to check my facebook ha ha.  (have to get my priority’s in order don’t I)

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The news of my results, shocked everyone, and I am please and thankful that my mum held it together for me when I phoned her.  I tried to make it as light hearted as possible whilst telling her and used her knowledge of being an ex nurse (which was before I was born) by trying to read out the blooming great big medical jargon that was typed up on the report.  I think it lightened the mood and rather than my mum thinking Oh crap, she had to use her brain on trying to think of where the areas were.  Good side tracking me thoughts.  We had a bit of a giggle too, Have you tried saying these words out loud, and on top of being super dozily drugged up on morphine meds, I finished up having to spell the fookers. 

Lee took the news quite well, and for the first time posted on his facebook, asking for his friends to say a prayer for me.  Big huge turn around here, as when I met Lee all those years ago in 2003, he wasn’t what you call a believer.  He beloved and didn’t believe if you know what I mean, he was more of a person that needed proof that things existed, he need to see things, but for this last 5 yrs, his whole attitude has changed in that department.  I would like to thank his friends for their comments to him; you really did make a difference.  I would also like to thank all my fb friend too not to mention my mum and family and my special little circle of amazingly close friends.  I know it’s times like this it’s hard, but as I said, it wasn’t all bad news.  The good news is that I can start treatment to start killing off my squatters and the super duper good news is that the progression is still in my bones.  Better there than going out of control in my liver or spreading to another organ. 

So after talking things through with Lee and then after my phone call with my mum, what did I do next.  Did I sit and dwell on the fact that the bone metz has gone mad.  Yeah I’m not chuffed about it, who would be, especially with the skull part cos its a bit too close to my brain for my liking.  Did I then call the next person on my list to of contacts to be informed?  Nope, I left my mum and Lee to do that.  I did what I do best.  I got changed, put on a bit of slap and went to the Pub ha ha... Pauline picked me up and we went to the bloody pub for a carvery and a huge glass of wine.  Now thats how you do it aint it.   We had a fab time, chatting and stuffing our faces with 3 different meats and tons and tons of veggies all topped off with a Yorkshire pudding and onion gravey.  Thank you Pauline, your a star.   

Whilst am on the thank you moment, I have to thank my sexy gorgeous hubby, he is the most perfect man I have ever had the privilege of knowing, I have no idea how he has put up with me especially over the last month or so cos I have been one super bitch with a biggest anger management problem ever.  He has took it on the chin whilst I have snapped at him for no reason what so ever,  he has listened to me moan, stood there whilst I ignored him (not on purpose but when my mind has gone elsewhere) but yet he has not moaned about my behaviour once.  He smiled and given me comfort at all times, he has done all the housework, done the shopping, taking the dogs out, the list goes on and I just wanted to say that I am the luckiest woman alive to have such a kind, considerate, sexy, gorgeous husband.  And Lee, I love you with all my heart MmWhaaa xxx

The Good, Bad & Ugly

First things first, Pain is getting better.  My legs are starting to feel like mine again, with the main area of pain being in my back and around the back of my rib cage area, which probably wasn’t helped by leaning over from my sun lounger to pick up my very large glass of larger shandy.  I remedied that immediately and took on the help of my super hubby who has kindly lifted or positioned my glass carefully for me to be able to drink it.

The Week has had lots of ups and downs, but life is like that isn’t it.  Life wouldn’t be life it was all good, cos the bad stuff is there for us to learn from.. mind you there are people out there that even after falling in shit pop up smelling of roses, but they are a myth cos if anyone tells me that a person has nothing but good stuff happen then they are living in a dream world.

Monday was planned for me to get a bit more active; I had until Thursday to pick up, sort my pain out and prove to my Oncologist that I am fit enough for chemo. And so putting priorities in order, Off to B&Q Lee and I went.  Stuff the house, cos in this glorious sunshine, my garden needed a bit of attention.  It took me all day to plant 12 bedding plants, so don’t expect much in the flower department for those of you who visit my garden, a few splits of my ground cover stuff later and a wonderful bird feeding box that Lee made over our waterfall  filter box has finished it off lovely. 

I am naturally nosey, and so when a letters come through the post, I open them ALL, even Lee’s which he doesn’t mind at all cos he just can’t be doing with endless amounts of junk mail.  Let’s face it; we use the postal service today for birthday’s and Christmas cards, and all that is remaining is the endless amounts of bills and junk mail, with the addition of in my case, Hospital Appointment. Gone are the days of letter writing with the good old internet and email service... (still not sure if that is a good thing or not).  I opened what I thought to be a hospital appointment and like the blog title says, it was ‘Good and Bad and Ugly’ the good was that it was a copy of the letter that my oncologist had sent to my GP and the Hospice about my pain control, so at least they are on the case and now just waiting to hear when my appointments will be.  The bad bit in it was it had now been written down that I would not be able to have any more chemo until pain had been controlled and my fitness level had improved.  Bad and Ugly part is; as you all know, I have treated my cancer diagnosis like a bloody bad flu virus that is as stubborn as myself and have majority of the time called it ‘the Squatters’, bloody downright ugly vermin squatters that I have been trying to evict for the past 5 yrs.    All this time, reports of always said Liver and Bone Metz present.  I don’t have large tumours, I have lots of small ones, which to me has been a good thing, but today’s letter read EXTENSIVE and so got me thinking about my so called squatters a little different.  It was a word that started to make me ask myself ‘How Extensive is it?’ and because I couldn’t answer, for some reason thought Lee would know the answer and plague him annoying with the constant questioning.  Like all this, I tried to put the letter out of sight and out of mind, and got my ‘What’s the point in worrying until you know there is something to worry about’ attitude, but every dull ache, twinge or agonising shoot of pain, made me think of it and wondered if everyone was something to do with the squatters.  I suppose the upside to being on such strong pain relief is that half the time your too zombie’d out to even care, and between you and me, i took a couple extra to be on the safe side.  Not that it worked when it came to bed time as i have suddenly developed an internal alarm clock that is going off at 3am on the dot, even with the help of the good old sleeping tablets.

Having all these scans, Lee said could be scary, he told me to prepare that they could show up something and that the squatters could have spread.  He is feeling it I know, cos it’s the first time really that he is trying to prepare me for hearing something new and from seeing me in so much pain, has brought it to the forefront of him that things CAN and probably will get a lot worse than they already are, especially with having so many bloody scans all at one time.   I understand him, cos I go through this every time I have a result from one scan, , its normal to think you may get bad news, its normal to wonder if the C has moved somewhere else, and definitely normal when you are in constant pain that no matter how much pain relief you have still won’t go away.  I think we prepare our mind for the worst, so that if it does come back bad news, it’s not so much as a shock to us, and don’t flip out into the big crying baby lunatic routine, and then there is the huge sigh of relief when you actually get good news. 

Thursday morning, just as Lee and I were walking out the door for the hospital, I received a phone call from the hospice, woop woop, great start for the day, I now have my appointment booked for next Wednesday so will definitely be getting my pain sorted out.  I had gone for the do the bit of hair and slap some war paint on look today, as if it would influence my oncologist into thinking that my fitness level had improved by 100% and that I had no pain at all with the way that I walked in doubled over like a granny trying to hold onto an invisible zimmer frame.  Lee made me promise that I would be honest and not try and make out that I am better than actually I am.  As if I could, he was coming with me and has a big mouth cos he’s landed me in it before and told Mr Nice Oncologist whole truth and nothing but the truth just seconds after I’ve been smiling my bloody head off an lying through my teeth.

As usual, waiting time at the oncologist was a bind, WTF is happening with the whole appointment system.  Lee and I were sat there watching people being called in way after we had arrived.  I’m not exaggerating either; we were sat for an hour and watched four people called in who had arrived friggin ten minutes ago.   I reminded the receptionist that I was still here, and she assured me that my name was the next patient to be called.  Lee and I watched the last patient leave the consultation room and sat for a further half an hour, but no-one was called in, so knowing our look, I suspect the docs had left and gone for lunch.

At 1.45pm Lee had to dash off to go pick Luke up from School, leaving me behind to receive my results on my own for the first time ever in this whole cancer/squatter palarva.  Lee has always been with me for results and I had no idea how I would react if the news was bad.  No hand of Lee’s to hold and no Lee to lean on. you never know with all this cancer crap, what news you will get, sometimes when you expect bad, you get good and then out of the blue when you things are hey ok, they give you the news that you just don’t want to bloody hear.  I did think about lying a little, well not lying, but exaggerating that my pain medication has been working better than it has, you know, to boost my oncologist in the right direction of writing me down as ‘Fit for Chemo’ but at the end of the day, this would only be lying to myself, , especially when the one of the chemo side effects is joint and muscle pain.

I was called in at 13.51 and then waited to actually see the doc.  So there I am sat all on my lonesome, twiddling my thumbs waiting and waiting to hear what my future held, to find out the results of my bone and brain scan.  Now that is one thing that bloody down right scares the crap out of me.  ‘The Brain’  I know I make a joke about actually finding a brain inside, after all I was a typical blonde, always been a bit dizzy, but can be quiet intelligent if need be.  Hey you don’t get a cap and gown and full teaching diploma’s at the young age of 18 for nothing. And then get awarded a full Honorary Diploma for the high standard of teaching in the same year.    Opps getting side tracked again.. Back to ‘The Brain’ Yes this area scares the shit out of me.  The thought of it invading that space and the side effects it can bring along with it is the one area that I would flip out over, and even though I have thought about this many many times, I have no idea, I would react.  Maybe numb, maybe hysterical, but fingers crossed, for me hopefully this day will never come.  So now you know, in 5 yrs, I have come out and said what actually scares me.  Come on now, I’m thick enough with all this chemo brain as it is and definitely don’t need the bloody squatters taking the last bits of my mushed up brain that works.

At 13.57pm the oncologist came in.  Notice the exact time?  I am taking note of actual times because of all the delays that have been happening lately.  Today’s oncologist wasn’t my usual Mr Nice one, but all the same she was really nice and apologised profusely for the delay.  We discussed my pain level and my daily activity, and phew thank goodness I could tell the truth and tell her I had been out walking the dogs and had been doing some gardening.  This she seemed to like, and looked over to my Research Nurse to give her the go ahead that I am ‘Fit for Chemo’  Good news or what?  Down side is that I will have to repeat my body CT scan because the last one has gone out of the time scale required for the Trial.  Stupid idiotic radiologist man, why do they not listen and think they know best.  I have to wait now for an appointment for the Scan before I can get a start date for Chemo. 

While in my oncologist appointments, I let the conversation take the path that it takes and don’t rush into the bits that you sometimes don’t want to hear.  I do this because otherwise, things that do get discussed, might not get discussed because the focus suddenly being on what I am asking, things like we discussed today, and the biosphonate pill that I have been taking daily for the past 2 yrs.  The biophosphonate is a bone strengther called bondranat, it helps to speed up the renewal process of the bone and when you have bone metz it’s a bloody good thing to have.   When I was first diagnosed with bone metz I was put on an intravenous form called Zometa, and today we discussed that because I will be having intravenous chemo that maybe going back onto the Zometa would be a good idea.  This would have to be checked with the Trial drug company as some drugs arn’t allowed when you’re on a trial.  The oncologist also said that to take calcium tablets and Vitamin D would be a good idea too.  This is when I knew that my bone scan was not good and that even though they and I already knew that there was some progression in my spine from the CT scan, I started to put two and two together from the pains that I have been having that my bloody squatters had been having a party.   The nitty gritty, we could not go through fully straight away cos the stupid dam printer was having problems and they couldn’t get the scan report printed out.  What we did have was the few short notes that had been written down in my file. 

Good news again. ‘My Brain’ is clear of cancer.  Pheww; to me that was the important one.  ‘There is more area’s of Bone Metz’  and when I asked where and how much, the answer came back ‘quite a bit’ but would go through it with me in great detail as soon as they got the report printed. 

In the meantime, whilst waiting for my report to print out at another printer somewhere in the big building of the hospital, I followed my Trial nurse and head off for an ECG, another test that was needed before commencing my trial treatment.  This was followed by a wee sample, my weight and height taken and then last but not least, my bloody pressure, temperature and pulse reading.  All that is needed to get me started now is the CT scan, which they have already put in the request as an urgent referral that hopefully I will hear straight after the long bank holiday weekend with a cancelation date.  Fingers crossed, it will be next week.

Now for the Nitty Gritty.... My Bone Scan results Report;  to be continued......

Waste Of Time !!!



You would have thought that after 5 yrs I would be used to the uncomfortable chairs and long tedious agonising waits for hospital appointments by now wouldn’t you, well for the majority of time I have.  I have been intent on putting aside half a day for a 5 minute appointment, I have also on occasions been intent on putting a full day aside for the very same 5 minute appointment because; we know for a fact that a hospital appointment is not to say that you have an appointment to be seen, it is there to say, get your ass up to the hospital along with another 10 patients for the exact same time appointment as yourself, and we will see you we get round to it.  I accepted this routine a long time ago, but when you’re in agonising pain and doped up to the friggin eye balls on pain relief, the last place that you want to be is sat bolt upright in a hard uncomfortable chair.

Sometimes the waiting gets the better of you, which is what happened last week.  I had 2 appointments on Tuesday 22^nd and a further 2 on Wednesday 23^rd.  2 hours into the waiting time to see my oncologist and was I was getting absolutely piggin bored stiff of playing my solitaire and losing badly, not to mention that my arse had took the shape of the seat perfectly and was totally numb, I sent Lee to get me a snickers bar from the coffee shop.  What else are you supposed to do; I couldn’t go out for a crafty fag, cos you could guarantee that I would have been called in, It’s like they have a radar implant in you somewhere bleeping constantly ‘Patient has left the building, Patient has left the building’ and then they get in there quick, resulting in you missing it and then having to start the whole friggin waiting period all over again.  I wasn’t supposed to eat either, I was on a 4 hour fasting for my CT scan later, but this sitting and boredom was just doing my head in a little too much, and when Mr Boredom peers round the corner, the only thing I know to do is eat or smoke.

Tuesday; It was 2.30pm when Lee and I were ushered into one of the side rooms.  Now this is where they try and trick you, make you think that it’s your time, when in fact they put you in these rooms to make you think your being seen, but leave you there for another half an hour to stare at some other walls and other smudges of dirt that are smeared across the doors ways, walls and skirting’s.  Today’s side room was also used as a store room for all their little gadgetry stuff, boxes of sterile wipes, plastic syringes, needles and boxes and boxes and boxes of gloves.  “We could do with some of them” Lee said looking over at the gloves. I laughed and said I wished I’d brought my big bag, cos they would come in handy for him washing the pots, get the him washing the pots bit, ha ha, I have one well trained hubby.

I was relieved when Mr blooming amazingly nice oncologist walked in.  He always makes me feel better, has always been honest with me and is one of the few doctors that I actually have any trust in.  Mr Nice Oncologist always likes to hear it from me why I have ended up in hospital, rather than just reading my notes and so the discussion was started.  My nurse was stood by, waiting for him to get round to doing a full body examination that she needed desperately to get me on the Wonder Drug Trial and to pin him down for my treatment plan (just in case I wasn’t picked out for the wonder drug), but just like my life for the past few weeks, or is it months now, I can’t remember, but anyway, things did not go to plan.  I thought I would be walking out of there with a date to commence treatment; instead my whole appointment was discussing my pain medications, dosage and referral to a hospice pain management doctor.  Mr nice oncologist told me he would not approve me for any treatment yet and needed to get my pain managed first. And so because of the stupid radiotherapy, I am now being delayed from treatment, which I can tell you is bloody frightening.  I have gone 5 weeks now without having anything. 3 weeks according to by hubby cos he says my last dose would have worked up until that point, but the fact is, I am having nothing to try and control the cancer.   My scan 4 weeks ago showed that I have further progression, so it comes hand in hand that going without treatment; the friggin squatters are not going to be stopped in its tracks and will continue to grow. 

As you can imagine with my emotional state lately, the tears started over flowing.  Mr Nice and perfect bedside manner oncologist brought me a box of tissues. I hate crying in front of him, Dam, I hate crying in front of anyone because it shows my weak side, which is exactly how I have been feeling for the past few weeks/months.  My appointment ended and I was given a prescription of quadruple strength pain medication to what I have been on and another appointment to see him on the 31^st, just over a week away.  

An hour to spare, and so I hobbled as fast as I could into the car (can still beat a snail so that is something) and went up the road to the Citroen dealer.  Roll on new mobility car wooo wooo.  Still not decided which one to go for, but it definitely won’t be another one of these C3 picasso’s, talk about rock and roll, you can’t go round a roundabout without rolling off the seat and into the door or the driver, and with the pains that I am having at the moment, this is definitely not a laugh about happy thing.

Back at the hospital, CT Scan and then hurray I could eat cos right then my stomach was grumbling that load I think it could be heard at the other end of the M1 and was being mistaken for some sort of road works. With not many patients waiting, ooh 3 in total, I thought this was going to be a quick get, stabbed, scanned and out, but oh no, why change with the way today has gone so far.  2 frickin long stupid hours and nearly an hour of that was me sat on me lonesome in the waiting room with 3 nurses stood around talking, which got me more infuriated because I was having to play dodge the stupid head from the one who kept standing between me and the bloody TV screen.  Lets face it, Location Location Location was on and if there is anything I like to watch on TV apart from my Corrie, is having a good bloody nosey inside someone else’s house.

My CT scan didn’t go as planned either.  The request was to have a full body scan and a brain scan, but Oh no the radiologist of the department decided it was way too freaking soon to have another one of the body (with the last one being 4 wks ago).   I was left strapped to the strolley while they tried to contact my nurse to find out what to do, even though I was at this point actually screaming at them that the full body was needed to get on the Trial.  I laid there with tears rolling down my cheeks.  The whole few weeks rolling around inside my mind, the pain, the waiting, the frickin squatters growing, the radiotherapy, the hospital visit, the Chatter Group palarva and not to mention the ‘Dr X’ situation.

The appointment ended of them just scanning my brain and being told that they would check if the body had to be done and if so, it could be done the following day while I was at the hospital having my radioactive bone scan.  Now correct me if I am wrong, but if the radiologist didn’t want to do a CT of my body because of the radioactive I’d already had 4 wks ago, then doesn’t it sound a bit hypocritical that he would be happy to do it when I have had a great large syringe full of radioactive pumped into my veins for the bone scan?  Bloody hypocritical if you ask me.

Wednesday; Lee and I decided that rather than both of us sat around waiting, that he would just drop me off at the hospital and I would ring him when I was done and ready to go home.  At least this way he could get some jobs done around the house, rather than wasting the precious time stuck to an uncomfortable chair.  For my bone scan, I was shouted through within half an hour whoopy dooo one for the Guinness Book of Records me thinks.  The first stage was to find a vein that had been left for them to use from yesterdays CT palarva (they stabbed 3 times).  Today they stabbed twice and injected the radioactive substance from a space age metal syringe.  After telling me the do’s and don’ts of not using public toilets (as I would crack the basin and probably scoot through through the air from the explosion with the loo still attached to my arse) and keeping away from children and pregnant women, I was free to go and fill in 2 and half hours for the radioactive substance to work its way round my body before heading back to have the actual scan done.  

Not wanting to waste any time sitting around, I went over to the Research Trial Clinic, to have my bloods done and my portcath flushed.  That in itself was a quick in and out.  So now what to do?  I couldn’t get a drink or a bite to eat cos I’d forgot my bloody purse.  Ha ha, Lee came to the rescue and drove back, handing me some dosh so I could go buy a picnic, well I would have thought I could have bought a picnic, but with the NHS blooming prices, I ended up with a sandwich and a small bottle of orange which the lady at the back of the till finished up having to put 5p in the till for me.  I sat outside in the sun and felt pretty good.  Pain was at a minimum and the heat from the sun relaxed me.

Back at the bone scan department I had to check with them that they had marked me back as returned as an hour went by.  Do they not realise we have better things to do with our time and do they not realise that we probably have more appointments to head off too after they have done with us.  Time was ticking on and I was beginning to wonder if I would get to my Heart Echo on time.  

There is something about Scans, whether it is an MRI or Bone density, but its a natural thing for me to nod off and take in some Zzz’s.  It probably has something to do with the equipment being so close to my bloody face that I have to close my eyes so no freaking out is done.  I hope I don’t snore, but what the heck, the machines are that blooming noisy no one would hear anyway.  The full body was done and then with the additional area’s they wanted to scan (pelvis and chest) I was done, the whole scan process took just under 60 minutes, leaving me 15 minutes to get to my Heart ECHO scan.

Now I really lost my temper.  After heading up to where they normally do the ECHO’s, the place that I have always had my ECHO, and after sitting for 15 minutes waiting for the receptionist to get off the phone to his mum, I was greeted with ‘you’re in the wrong place’  ‘What’ I thought, I had just come up 4 flights of stairs (ok with the aid of a lift) but that does not change the fact that I had to go back all the way to virtually where I had just come from and let me tell you , that corridor is as long as the A1.

I couldn’t find the place I needed to be and was getting angrier by the second, and very tempted just to jack it all in and go bloody home.  Best thing is Mr Nice Oncologist won’t let me have treatment until my pain is sorted; he said I needed to get plenty of rest and makes sure I took all my pain meds at the correct regular intervals.  How the hell am I going to get it sorted when I am traipsing around from one of the hospital to the other for 2 bloody days on the trot?  Plus I had popped ALL the pills that were in my bag and felt like I was turning into one of them junky drug people who would do anything to get a quick fix.

Eventually, I was laid on the coach with my top off and little sticky pads stuck all over me, with an ultra sound probe prodding around my left breast.  People don’t realise, but by having implant reconstruction, it makes it blooming well hard to get clear pictures of your heart.  Apparently the stuff inside the implant distorts, you can see the heart, you can see it beating, but to take measurements of the muscle etc, is just a mere impossibility, with the only way of getting the images is to stick the bloody probe deeper and deeper into your ribs, implant, stomach and jugular.  It’s one of them times that you would swear blind that you will walk out the room with a couple of cracked ribs and a burst implant.

It feels that my week has been taken up with a lot of time wasting, sitting around in a bloody hospital when I could have in fact been laying on my garden lounger in the glorious sunshine that we are having.  It hasn’t just been wasting time at the hospital, its been knowing what to do with my time when I am at home, I can’t be arsed to watch the TV, or do anything. 

Normally on occasions like this, when I am more immobile than usual, I take to facebook and spurring on and supporting people, makes me feel that I have actually done something constructive, but with my facebook gone, I have nowhere to go.    I received an email notification that even though my fb was inactive, I had been added to a group, then another email came through and another, so I logged on to remove it and stop my mobile phone flashing up every few minutes with stupid bloody emails.  I got the shock of my life.  The person who had caused my Chatter Group to close down had created a group; it was created just 2 days after me closing Chatter down.  Now you may think, well the girls need somewhere to go, I did too, but what got me was the post from the so called, what I used to think was a friend.  She had wrote “Lets keep this group secret cos I think Karen has had a Mental Break Down” What the Hell!!!   Ermmm ok, I have had a lot to deal with lately but for someone who is as fooked up as her, definitely does not have the qualifications to diagnose me as having a mental breakdown, plus if I had, it would have been all her doing.  Again this person got me bloody angry, which I got even angrier because the girls were agreeing with her.  To me a true friend would not have kept this secret, they would have told me.

I had a lovely evening at Pauline’s on Wed evening (23^rd), I cried on her shoulder a few times and we discussed my BreastCancer profile and Chatter.  Thanks to Pauline, she kicked me up the ass and made me see things from another point of view.  She was right, why should a lot of the women lose out because of one person.  After 2 glasses of wine (first in months) I felt better and agree’d with Pauline that I would reinstate my BreastCancer Karen Profile, but I would cut all ties from the person and that would involve removing any mutual friends that we had.  

I know I can be a stubborn cow, but the point of the post title ‘Waste of Time’ is just this.  I have to waste precious time waiting around in hospitals. I have to waste precious time, sitting in traffic getting there.  These waste of times, I know are a part of my life and without them I probably wouldn’t even be here writing this.  I have no idea what the outcome of my scans are as yet and no idea what is around the corner, but the one thing I can control is the time wasted on people who just don’t deserve my time or effort.  Like I said in my previous post; I felt alone and abandoned.  Re-activating facebook showed me I wasn’t alone and it took me days to go through the messages that were left.  I removed anyone that had anything to do with the Author of the book and will admit, I felt guilty by removing some of them.  We were friends long before the Author, but I felt that if I left one person, then it would give the others more ammunition to throw at me.  So if you are one of the people who were removed, I hope you understand, I needed to cut all ties with the author, the whole ordeal knocked me for six and seeing who I thought to be friends agreeing with her, put me on the whole ‘I don’t know who can trust thing’ As the saying goes, True friends will always be there, no matter what and as for the time wasters, well, No more time is being wasted from me, Cos this bitch is kicking back.

Am I Depressed???

This blog will probably have me in trouble, but at the moment I just don't give a shit, because things need to be said, to show how every little thing can accumulate to my already instable emotional status.

Some of you may have wondered where I have vanished too on facebook.  Well to cut a very long and painful story short; I’d had enough.  

Over the last month I have mentioned that I feel old and ugly and remarks of 'oh you look better in your wig' or jokes about my so called laughter lines just arn't getting the laughs back from me that they used to get. I could at one time take these jokes on the chin and laugh as much (if not more ) than the rest of you, even the point of me making fun of myself and how I look before anyone could get the chance to first. But I suppose there has to come a time when I say 'Fuck it'. Let's face it, writing my journal is my therapy not yours and if I need to get something off my chest then so be it. It is not to make you feel bad, it's to make you realise that just because you see me plastered with makeup, have my wig on and am smiling my bloody head off that inside it's a totally different scenario. I'm frickin screaming inside. Who the hell wants to walk around in an itchy hot wig all the time just be accepted into what is classed as the normal society. Well it sucks and I am more comfortable with no make-up, no wig and thrown across my sofa in my PJ's.  

Let's get something straight, if you have the sniffles, don't friggin complain to me and expect sympathy, try living with a constant sniffy nose from the treatment and medication I’m on.  If you wake up in a morning and have a stiff neck, or achy back or leg, then welcome to my world. Deal with it, try and give a thought to the thousands out there who are suffering constantly day after day, whether through pain from the cancer or emotionally and physically due to the toxin chemicals that are being pushed through your body every single second of every friggin day that leaves you a drooling snivelling zombie spaced out in the corner of the room.

So why have a snapped. Well it's plain and simple, I have tried hard this last year to fight the side effects of treatment, and look forward to getting some quality of life back that I never thought I would find again, I'm still looking especially with all the pain that I am enduring at the moment.  It's seems that no matter how hard I try to do the right thing, the right thing turns out to be wrong, so I'm in a no win situation no matter how you look at it.

Spending the week in hospital is probably the culprit of me feeling the way I am, hospitals just arn't a good place to relax and feel good about yourself.  How can they be, there is way too much time on your hands and laying there hooked up to a drip and looking like friggin death is defiantly not the sort of look people are used too, resulting in the tilt of the head sympathy look saying 'how you feeling'. Obviously me being me has answered every single frickin time with 'I'm fine' and with that stupid idiotic grin splat across my face.  Well I'm not fine. 

Sometimes I feel that I can't do right for doing wrong and probably with feeling so bloody crap I just wasn’t emotional fit enough to take on what I least expected when I got home, and that being a a whole group of women’s messages that inevitably had me in tears.  Oh don’t get me wrong some were nice (very nice) messages, but a whole friggin lot em weren’t and were of blame.   I felt used, abandoned and blamed for something that I didn’t even do.  

Ok so there was a book written about ‘Chatter’ the support group that I had created by one of it’s the members.  I proof read the book highlighted alterations, and was bloody well chuffed to the smithereens that it got published and that in a month had sold over 300 copies, raising nearly £200 for Macmillan Cancer Support.  I’d received some phone calls and private messages saying they were utterly shocked with the way the book opened, reading as though the author of the book (not me) created the group.  Some had downloaded the free version first but insisted that they would NOT buy the book until it had been amended and one was threatening to report the book.  What I didn’t expect was the verbal abuse that I got from the group members, because the author removed the book from sale (after or before) deleting me as a friend and herself from the group, just because I pointed out to her that I’d had some complaints sent to me and asked if it could be amended.  At the end of the day, my group was a support group, yes a SUPPORT GROUP to bitch and moan about anything to do with cancer and treatment, to help each other, not to bitch and moan about no bloody book.  I soon realised and felt that all the support that I had given, even from my hospital bed was one side.  I needed support and got none.  Not one member who complained to me about how the book had been written came to defend me, except in a private message, which was no bloody good.  Maybe if I had been in a better frame of mind and not doped up with morphine handled the situation differently.  Maybe, but the final straw was messages coming through telling me to take time away and hand the group back over to the Author WTF, she had nothing to do with the creation of the group, she was not admin and had been in the group for a total of 7 months baring in mind that she had removed herself once before just because I asked her to curb all the jokes.  May sound petty, but I don’t give a shit, it was my group.   I announced that the group would be closing and panic stations started of posts saying ‘Where will we go to chat?’ and then posts for other groups.  Not one was to say ‘Are you ok Karen?’ So Monday 14^th May 2012, BreastCancer Karen for the first time in years became inactive and with the help of my matey Pauline, the group ‘Breast Cancer Chatter’ that I created over a year ago was closed down, emptied of all its contents and deleted.  I cried as I watched each name disappear, I cried as each picture was removed and cried at the removal of the Prayer Events that were held for lovely members who we’d lost.  Even though I had Pauline to talk to that night, I have never felt so alone and not knowing who I could trust I shut myself away.  

On top of that, I also had emails to deal with regarding my complaint about ‘Dr X’.  I had emailed a couple of weeks before being admitted to hospital; giving them a dead line of May 17^th (the 5 yr mark to when I was diagnosed).  I got a reply saying that they thought that a satisfactory conclusion had been made back in 2101 and so my case had been closed.  As you can imagine I was downright bloody infuriated.  I’d sent a reply back but didn’t get a response back until I emailed them again on the 17^th telling me that I had to go through the proper channels and write in a complaint letter to the complaints department.  Errr excuse me, but didn’t I already do that FIVE YEARS AGO?   I spent all day, emailing back and forth, while trying to get my head together to write my name and shame document.   Unfortunately, because I got so stressed out and Lee making me put my laptop away the document wasn’t finished and so the hospital is probably thinking that they are safe and didn’t mean that I would name ‘Dr X’ and all involved with my complaint publicly.  Well they got another thing coming, cos when I get this document finished, I am going for the bloody jugular.     

The hurt that I have felt over this last week has left me totally confused, upset and very angry.  The little bit of self confidence that I had left has been crushed to nothing.  I have had to cope with being a doped up junkie for the pain that I am still in, the awful pain from being constipated and so bloody tired that I have spiralled down and down and down to the point of crying just because I wake up in the mornings.  So I guess the answer to the post title of ‘Am I Depressed’ is a big bloody massive YES.  Over the last week, I have lived in my PJ’s, I haven’t even been arsed to brush my teeth and so probably up to this morning stunk worse than poo.  I have cried more tears than I have in a life time, shouted and snapped at Lee for just being in the same room and shouted at the dogs and not paid them any attention at all.  All I’ve wanted to do is go to sleep. Lee has had to work overtime to keep me functioning and to be honest, I have no idea how he has kept control, because no matter what encouraging words he said to me, I have thrown negative back at him.  I threw in the towel, I just couldn’t take anymore and felt that this was my life from now on, constant pain, and being so bloody dizzy and high from the pain medication that I didn’t know whether it was night or day.   So much for my banner’s word of ‘A Positive Mind is Half the Treatment’ where has my mind gone, how did I let it all change?  That’s the problem with depression; it bloody sneaks up on you bit by bit just like frickin Cancer.

And then as if things couldn’t get any worse, Lee’s back went and when I say ‘went’, I don’t mean to a sunnier climate, I mean it as going from straight to curving all over the place, the ‘went’ meaning his disks (get the plural cos there is 2 sneaky buggers) popped right out from picking Luke up off the floor after falling off his scooter to take him to the hospital.  That evening and for the next 3 days all 3 of us were laid up; me with my latest problem, Lee with his prolapsed disks and Luke with a broken ankle.  We coped, because we had too because even now as I write this, not one person has been to the door.  We joked about putting a notice on the door ‘INVALIDS ABOARD’ but knew that no-one would see it anyways.  This in itself puts me into my feeling sorry for myself mood.  It worries and scares me with Lee’s back because if my mobility stays as it is, which I am hoping and praying hard that it’s just a temporary setback, but it scares me of how we would cope.  I know my mother’s answer would be to move back to Doncaster, but my home is here, it has been for the past 8 years.  My hospital is here, my wonderful amazing oncologist is here, my Bessie mate (Thank you Pauline) is here and another important factor is; my favourite one and only step-son Luke is here.

I suppose admittance to having a problem is the first step.  Yes I admit it; I have been pushed and pushed to the point of every little thing exploding into one huge atom bomb.  Maybe it serves me right for spending too much time thinking of others when in fact the person that needed the support was me all along.  I thought I was strong and positive, but yet without my group I have nowhere to go, to ask a simple question such as ‘How long will this pain last’ Another ironic thing is for a long time, Lee has told me I spent too much time on facebook, but seeing how everything has affected me over the last couple of weeks, he has been trying to talk me into re-opening the group.  He has realised that the group helped me too, but the group thing has been and gone, it’s in the past now.