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

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.

Home at Last !

Well after a fantastic Bank Holiday yesterday, Today didn’t go to a very good start.  All weekend I have been waiting for today, so that the NHS could get their ass into gear and get me the MRI done on my spine to find out if the pain that I am having is due to the radiotherapy or ‘IF’ there is anything more sinister going on in my spine that needs attention, which is what has been going through my mind. When one’s legs just suddenly stop friggin working properly, one’s mind is bound to go into overdrive of fears ending up a cripple for the rest of my life and being pushed around in a wheel chair and being so totally out of it from the medication that one wouldn’t know whether they were coming or going.  ‘Drooling endless amounts of spit  in a corner springs to mind’.

Because the hospital have had me so bloody drugged up all weekend from all the morphine based medication, steroids and other stuff that I don’t even know what they are for, my pain today has in fact eased.  Get the word ‘EASED’ I didn’t say frickin gone. AND because of this, ‘get it’ they are now saying that I am not having a scan and can go home later today.  Excuse me, but I have been a patient patient here, waiting patiently for everyone to get back to work to get this done.  I could have had a strop and insisted that they carted me over to the other hospital and get the scan done on Friday, or Saturday or Even Sunday for that matter, when they told me why there was a delay.  Oh but no, I just sat there, dizzy from the meds, hallucinating and hobbling around in excruciating pain.  I am not a happy bunny.

I fought my case and told them that the pain had somewhat eased because I was so out of it with the pain meds, and so ended up going onto a pain relief strike.  Sounded like a good plan at the time and after the doctors and nurses rushed around for another hour or 2, agreed to do the scan.  Every hour I was approached with lots of pain meds and each time I turned them away.   I was not going to give in just for them to get my pain under control once again and then kick me out of the ward without the scan.  What if I had spinal cord compression, What if the vertebra they had targeted with the rads had become weak and collapsed onto the nerves that ran through that area.  These were the things going around in my loopy brain.   Being in hospital gives you way too much time with your own thoughts and if you’re not careful you will diagnose yourself with everything but the blooming kitchen sink, especially when your brain starts to become alert from the lack of pain medication that for the last few days has kept me asleep and comatose’d.  

Then the nurses said the scan would be on Friday, which I was not too happy about, talk about sending the referral off as urgent, that has to be a bloody joke.  I also know that there is no way on this planet that I can go without pain relief for that length of time, as the pain has bloody kicked in to the point of me becoming a bit of a cry baby and not wanting them to see that I am a cry baby, do this by hobbling to the loo’s or making my way down the lift and going for a crafty fag.  Ok Ok so I shouldn’t smoke, but what else is there to do.

I thought by going on pill strike and not taking steroids I’d get a good night’s sleep... So blooming wrong was I.  I was shattered, in constant pain that was getting worse by the second, but no matter how I tried to lie, I just couldn’t get comfortable or off to sleep.  Then everything went mad on the ward, a little old lady in the bed across from me was having a bit of hard time and had the nurses running around like maniacs.. ‘Yay for them being maniacs when maniac mode is needed’   I sneaked off the ward at gone 3am and found myself in tears outside puffing on yet another ciggie.  Mad, frustrated and in lots of pain, I was proper fed up.  Its times like this that I start to get angry towards ‘Dr X’ If she had listened to me, would I be here right now?  Nope I don’t think so, I would probably be one of them people that spent every day in fear that the dreaded C would come back.  Maybe it would have come back, but my anger towards ‘Dr X’ is a full on anger, slap around the face anger and make her live like I have for the past 5 yrs anger with the drug after drug and chemo after chemo, not to mention having my bloody boobs chopped off.  Is this normal for anyone to feel so much anger towards one person?  People tell me it’s not good and I should try and forgive her and move on, but how can I move on when every single day, I am fighting for a longer life. And that life being able to live it rather than the awful bed ridden sickyness year that I had last year.   I cannot forgive her, could you?

On Wednesday late afternoon, things just got too much for me.  The pain was full on, Ok I admit it wasn’t to the extent that it was when the ambulance came for me, but it was bloody well painful enough to the point that I felt sick, light headed and full on weepy.  I sent Lee a text, telling him to come get me cos I’d had enough, and then carried on chuntering on in the text that I’d had enough of it all and wanted out, even saying that if I knew how many pain meds to take for me to fall into a deep deep sleep of no return then I would take them.  Sorry but its how I felt.  Sometimes things just get too much and I can’t see any end to the pain and suffering. I know I’m now over exaggerating here, cos my life hasn’t been full of pain and suffering, I have had a good 5 yrs, I’ve done things and had lots of fun, but it’s just these short spells or pain, helplessness and frustration that things aren’t going to get any better that get me into this frame of mind.  I lay in my bed with tears rolling down my cheeks, when my nurse and doctor came round.  That was it I was in full chunter mode of gabbling to them about ‘Dr friggin X’ and that I’d had enough and wanted to end it all.  Of course Doctors being doctors, the first thing they push down you is... haaa you guessed it... pain meds.  Gave me a good handful they did.  They did give me some good news and told me that my MRI was booked for tomorrow (Friday) and then all being well I will be allowed home.

What have I said before DON’T PANIC THE HUBBY, well any text saying that you’ve had enough and want to end it, will do just that and whilst my doctors were with me, getting pills down my neck and trying to calm me down, I had constant ringing from my lovely hubby, of which I could not answer because of everything that was going on around me and my bed.

I apologised to Lee profusely afterwards and when I had calmed down, and even now I still feel bloody awful for doing that to him, but like he says, he’s used to my tantrums by now.  5 yrs will do that, but talking about swallowing pills is a no no, and I have had to promise I will never ever talk like that again.    This is the first time I am posting about how down I get sometimes, oh there has been many occasions, but with the Breast Cancer Story website everything is being published in order that it happened and as yet on there I haven’t got to them bits yet.  I suppose it’s because I was much stronger back then too and still looking forward to the fact that I would be cured.  As now, there is no cure for me, there is just control and right now the controlling stuff just ain’t doing such a good job.

I have to realise that a main part of my life is pain control; the awful pills that make you go ga ga.  To date I have taken them as and when needed which has worked for me, but with the excessive pain that I now have, I have realised that pain cannot be turned off within seconds or minutes of taking some stupid pills.  It took all weekend to ease the pain and yet through my own stubbornness, I let the pain return which then put me in a bloody foul mood and temper.  Would I do the pain relief strike again?  Not blooming likely.  I have learnt my lesson, I know I am stubborn and I accept that this as my downfall.  I hate getting down especially to the extent that I did do and wanting my life to end.  I am not a negative person and throughout the last 5yrs I have always come out on top, laughed, partied on and not let this cancer crap get the better of me, and I know that I have to get back to that same determined person.  I will get that person back; I had a minor melt down which I think I am allowed from time to time. 

My scan happened at 12.30pm which they timed just right; I was just about to tuck into my shepherd’s pie (oh yummy yummy hospital food is great).  Having been there and done it all before I knew the process, but for some reason today, whether it was because I was so freaking high from all the meds.  The fear of being enclosed in such a tight space got me breathing and gasping for breath, which I might add just doesn’t go too well with the already dizzy dizzy bloody head going around in ga ga land.  The whole scan took a mere 45 minutes with the added bonus of it feeling like 10 hours from the closterphobic feeling or hyperventilating from the pain meds and breathing.  I got through it; we always do and nearly fell over backwards from going all dizzy and sick as I got up from the trolley to get sat back in my wheel chair.  2pm and I was back on the ward... laying and waiting for results before I can go home.

It’s amazing but one minute there telling me I can’t go anywhere and have to wait for results and the next they’re kicking me out.  Apparently they need my bed and so with no clothes to go home in, I have to pack up my belongings and get the feck out of there.  Where am I supposed to go?  Oh yeah, the little day room with the upright positioned hard back chairs that will surely have my bloody painful legs feeling great in no time, not to mention keep me up right from all the nausea and dizziness I am experiencing.  Excuse me, but if the scan had been booked when it should have been let’s say for example ‘FRIDAY’ I would have been out of here on Tuesday.  Then as if that isn’t enough, apparently when one has had one’s scan, your pain miraculously vanishes, well so they doctors and nurses think, cos all they seem to be concerned about it getting their precious bed and none of my pain or nausea meds.

One minute I am ring lovely hubby to come pick me up, then I’m ringing him to hold fire.  I have to leave, I can’t leave, I have to have results, and they want the bed arghhhh I am so frickin confused, not to mention by now I have a very frustrated husband from not knowing what the feck is going on.  He drives half way to the hospital, and then drives all the way back home in a matter of minutes.  Well if the hospital thinks I am going to get the flack from this then they have another thing coming.  Do they not know by now that my husband has an even shorter fuse than me? 

By 5pm I get the super duper news that my MRI says yee haaa and there is no spinal cord or nerve compression.  The pain is caused by a flare from the radiotherapy and so I just have to take the pain relief and wait for it to ease on its own. How long? No one knows, it’s the piece of string story.   My cannula is taken out of my portacath and within 10 minutes the hospital had their precious bed and I was on my way home with one bloody happy and relieved hubby.

For those of you who know me, you will already know where I headed... straight for a long soak in my bath. 

It’s so good to be home, I still have quite a lot of pain and am still very drozy from all the meds but at least I have my home comforts (my laptop for one) and the peace of mind that nothing more sinister is wrong in my spine apart from the friggin squatters we already know about.

Its always good to get in your own bed and I caught up with the last week of sleepless nights by going straight through for 13 hours. (Oh my! I sound like I’m talking about a baby ha ha)

I would like to take this opportunity to apologise to all who have had to endure my painful posts to facebook and even worse text messages.  Being home now for just 1 day, I have had it brought to my attention that my spelling has been absolutely atrocious and on the majority or texts, words could not be made out to what I was actually saying.  As I have said before, I was a dumb blonde in my past life, I find it funny when the hospital say there are going to do a brain scan (funny that they actually think I have a brain and can find one) and on top of being so blooming dizzy as the norm, these super drugs of morphine just don’t help.  Well from what I can gather, is that they help big time in keeping everyone amused with my spelling, wrong words and totally going off in the wrong direction with a subject..  Which reminds me of a conversation I had on the phone with my mum, I can’t remember what it was, but I do know that I suddenly blurted out ‘Oh the dickie birds’ when in fact she was talking about something totally different.  Well at least it gave her and Lee something to laugh about.   I’m still on the meds and recuperating, so be pre-warned, if you text me.    I have tried to clean up my last 2 blogs before posting to make them readable from the jargon that I wrote whilst in my hospital bed.

Its so good to be home, I have my 2 dogs laid beside me and the most gorgeous considerate patient man that I have ever had the pleasure to know.  Lee, I love you and so proud to call you my husband MmWhaaaa xxx  

Now to catch up on my Corrie!!!