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.