Showing posts with label NHS. Show all posts
Showing posts with label NHS. Show all posts

Monday, 21 May 2012

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 14th 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 17th (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 17th 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.

Friday, 11 May 2012

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!!!