I should be happy but the good news is tainted

Finally got to the hospital after my clinic was cancelled a couple of weeks ago and got the next available appointment to see my consultant which was yesterday, a Monday rather than a Thursday.  My uni clinic module leader allowed me to miss the morning of clinic so I could go to the hospital as uni clinic is on a Monday.  So I arrive at 9.15 (joyous) and not long after I'm called for my blood test.  The (stupid fucking incompetent) nurse who (attempted) to do my bloods sat me down and said, 'oh, you have very little veins' whilst prodding my right arm that I didn't have ready on the arm of the chair.  So I said that the other arm is usually fine and showed her the vein that is used.  She put the needle in and didn't attach the tube properly to collect the blood so air travelled up the plastic tube.  Great.  The vein then stopped working.  I began to not feel great.  She then put a new needle into the back of my right hand.  By this point I was sweating, my vision was going and I thought I was going to throw up.  Did she notice me cradling my head with my other hand?   No.  So I told her to remove the needle and got outside as quickly as possible before I either passed out, threw up or both.  Luckily the main door to the clinic was close and there is a bench outside, so I sat on that breathing deeply, trying to feel normal with blood running down my hand.  Did she follow me immediately to check I was ok?  No.  Was it only when I went back inside that she noticed me?  Yes.  Then another nurse who is great and never has a problem with my apparently small and terrifying veins inserted the needle and got all the blood needed first time with me upright and feeling fine.  As the day wore on the bruising by the first nurse got worse so I couldn't have my hand below my waist because it hurt too much.  I had to walk around like it was in a sling.  The first vein she went into is in the crook of my arm and wasn't so bruised and swollen, but I couldn't fully extend my arm.  So that was FUN.

My consultant.................................WASN'T FUCKING THERE!!!!!!!!!!!!!!!!!  I was furious.  Luckily my pa was with me, so he spoke to the consultant who saw me as I sat there crying.  It was only 10.30 in the morning.  I told the consultant I had been promised the start of a trial and my father could back me up as he was with me at my last appointment.  Apparently it still hasn't been signed off.  I explained that I was sick of the hospital not understanding that this is my life and at 28 I should not be constantly restricted with what I can do and having to cancel plans all the time etc  After a while of chat, mainly between the consultant and my pa he agreed to drop my dosage by half and to see what happened.  He did the whole 'it might not have any impact' etc etc etc, but at least he is willing to give it a go.  Probably means I can't go in the trial if and when it takes off, but maybe as things, fingers and toes crossed, improve, they will become more open to trying me off the meds not too far down the line.  By him doing this, I also suspect that my consultant could have done this as well but didn’t because of her trial.

I'm debating about formally complaining about my possibly now ex consultant, I don't think I'll be seeing her again.  Or maybe just write her a letter explaining everything and at least that might get acknowledged unlike the millions of emails I've sent in the past and messages I've left with her PA.

So it should be happy news and, well to be honest, I don't feel like it is.  I feel let down and like a hospital number to my potentially ex consultant, not like the person that I am who has been under her 'care' for the last 6 years.

Due to lower dose, back in 6 weeks, so will tell you more then.

Lots of love, laughter and smiles, although, I'm not going to lie, that wasn't me yesterday it was more tears, fury and hate,

XXX

Goodbye never gets easier

Well my bloglets,

It has been a while.  I feel a bit (very) guilty for not writing this for so long.  Fairly frequently, normally when I'm on the tube, I think of all the things I should be writing on here to keep those of you who read it up to date and to give me a place to process my thoughts.  There is a lot I want to say, but think that some of it should be kept to myself as I'm not ready to share, and don't know that I should either.

I have had a check up since I last posted, all was fine, still didn't start the trial.....  Apparently next time which is in just over a week.  It should have been last week but my clinic was cancelled.  Great.  And I was offered a Monday appointment instead and I have Uni on a Monday, it's the day I observe in the Naturopathy clinic and we have to have a certain amount of hours logged or we don't pass, which is why I always go to the Thursday clinic.  When told I couldn't do Mondays (to the most uncaring, unhelpful, fucking rude receptionist) I was told that the next Thursday appointment was at the end of August.  Fucking woman.  The correct response should have been, I'm sorry that your clinic has been cancelled, I will squeeze you into the following Thursday as you have been inconvenienced.  But no.  Twat.  Luckily I have been allowed to take the morning off Uni and have only had to wait a couple of weeks.  I am going to voice to my consultant about the lack of patient care and consideration by the receptionist.  And quite fittingly, I went to a talk this week about care and compassion in the NHS, or rather, the lack of it.  I found myself getting quite angry internally during the talk when I thought about my consultant in Edinburgh and the shocking way in which I was treated.  A GP opened the talk and said how that when pain is acknowledged it is lessened, and you know what, he was spot on.  I can't remember how I felt when I was in pain, the memory is a clever thing removing what is too much to deal with, but I remember the misery and the isolation and the disbelief that my consultant who was meant to be looking after me did not listen to me or act on what I said.  I know I have mentioned this once or twice....! before.  It might have been just over six years ago that I was finally taken off the fucking hideous drugs, but it is something I will carry with me forever.

Saying good bye.  This is something I have had to do a few times in the last five weeks, and it's something that no matter how many times you do it doesn't get any easier.  The first goodbye was to the most utterly adorable little kitty Frank.  He at 18 years old developed a tumour and had to be put down.  I had been at home a couple of days before so as usual said goodbye to him when I left with the inkling it would be the last time.  I was told by my Ma that as the vet put the needle in to put him down he carried on purring.  I would like to think that when it's my time to go, I can go as happy and relaxed as he was.  When I was immobile on the sofa during shit chemo, Frankie and Winnie and Alanta used to spend all day lying with me keeping me company.  Frank was a cuddle whore and Winnie was mine so them being with me might not have been so odd, but Alanta who does not like to be cuddled also used to be with me, so I like to think they knew I was ill and tried to ease my pain and loneliness.  Skipping the next goodbye in chronological order, to move straight on to Winnie as it's fitting to mention her here.  She was my cat, and Franks sister, and on Tuesday just gone, she too was put down.  I'm not surprised she only died 5 weeks after Frank as they were pretty inseparable.  I, by chance decided to home last weekend and once again had a feeling that when I said good bye when I left to get the train, that it would be the last time.  I however was not prepared, even though I thought I was, with how hard it has hit me and it seems like yesterday that I brought her home.  Maybe it's because the week before I had to say another goodbye.
This goodbye was to a human not a cat.  This may come as a surprise to some depending on how well you know me, but I was actually in a relationship.  I know! And then he had to move because of work.

So goodbye has become a bit of a theme recently and it's made me think a bit.  I am, as ever, desperate to come off treatment and to get my life back.  I am praying that this is the news I get a week on Monday, the trial has finally started and I can reduce my drug amount by half and then in a year come off it.  I will then also have to say goodbye in a way to me.  I was talking to someone recently saying how I miss me and how at the same time I'm scared of who I will be when I'm off treatment and they didn't get it.  They looked a bit puzzled and said but you are you.  Maybe it's because I hide how I feel a lot of the time.  I know that everyone gets tired, but I want to be able to cope fine on 8 or 9 hours sleep and to function normally and not have to chain drink caffeine and eat sugar constantly to get through.  I want to be able to have a full day of Uni and not be too exhausted to do something after or do a bit of Uni reading or just not feel fucking knackered.  I want to know that I don't have to carefully manage my time and not constantly bail on people because I can't face walking to the bus stop around the corner from the flat.  Maybe I have this idealistic view of how it will feel or how I did feel, I can't remember.  All I remember is tiredness or worrying about how tired I will be.

I feel this is a ramble and I am not voicing very well what is going on inside my head at the moment.  And that this is just a re-phrased repeat of what this blog has become, a blog of my being tired.  I sometimes feel that I have something to share and then think this is just mindless drivel.

I've also been having a bit of a 'what about me?!?!?'  moment recently.  Teenage Cancer Trust have started to advertise and they have an advert in Warren Street Tube so go past it twice every time I go into Uni, and I know this is ridiculous, but I feel left out that I'm not on the poster or used by them any more in the way that I was.  I know.  I'm mental.  I know that I'm far too old and that everyone else deserves their moment to shine, and I had so many with them.  Maybe it's because I'm still not free that it's so raw.  I also think how it could have been so much better had I been treated by TCT, but then maybe not.... and that is another story for another life which is not mine.  I am speaking at their conference in October so I know I'm not really forgotten.  I just liked being told how amazing I was by people.....it made me think I was.  It's not a word I would use to describe myself.  (And maybe that's another reason I miss him - he told me I was amazing all the time).  I'm just me, being me, carrying on with a smile on my face because if I don't and actually stop to think about everything, maybe I would resign myself to a lifetime of chemo and exhaustion.

With lots of love, laughter and smiles,
XXX