A little space to think

So I don't know where I'm going with this. And yes. It might surprise you that I do often have a vague idea of what I am going to write. I am also typing this on my iPad as my laptop is in London and I'm at the rentals so the length of this will depend on how long I can be arsed to type and then delete and re-write because I keep on pressing b instead of the space bar. 

I think the general topic for today is change. I don't like change and recently I seem to be faced with a lot of it. Nothing that major but enough to make me a bit uneasy. Is uneasy the right word? Maybe not. I like a bit of a routine, nothing too strict, I suppose it makes me feel safe and change is the unknown and therefore not safe. A tutor of mine, most times she sees me at uni always says to me, as she knows how I feel about change and uncertainty, is that the only certain thing in life is change and uncertainty. Part of me wants to smack her but as she is/was a weightlifter/trainer or something and is basically pure muscle, I don't. 

Much of what I want to mention is things I have mentioned before and therefore don't want to bang on about it being whingy. Part of me also doesn't want to mention it because when I write about it, it becomes reality, but if it stays in my head, it is only in my head. 

So, the boy. Maybe getting involved with someone when you know they are going to move to the other end of the country was not such a good idea.... Isn't retrospect SUCH a wonderful thing?!?! We had a routine and now that's changed and I don't like that. So I am now being a girl and over analysing every message and the time it's sent to try and find a hidden meaning as to if it means he's moving/moved on. Moving on is a good thing because life keeps happening and I don't want to live in the past. I suppose it links in to feeling stuck and in limbo land. But sometimes the memories of the past are too tempting to stay in. 

Treatment. I think I'm still processing my last check up. And it's only today, over three weeks (I think) since I was at the hospital that the bruise on my arm has finally gone. That fucking nurse....... My memory has not been very good either, which I can't work out if its due to the stress and tiredness of the final weeks of a very full on and stressful uni year or if its because of shock from my check up. I keep on forgetting to take my drugs and have written the days of the week on the packet so I know. I seem to have a bit of a mental block about them.  And do I feel less tired? I don't know. Maybe. I can't work it out so focus on it instead of letting it be. And if I do feel less tired, do I slightly resent it? Which I know is fucking ridiculous  as its what I want. I don't want to be tired, I want my life back. I also still want to be special...... Maybe that also goes back to the boy. He made me feel really special and spoilt me and now that's gone. And now I feel ungrateful to all my friends and family who are so wonderful. It's a constant battle and argument in my head. And the guilt. There are people I know and who I chat with who have it so much worse than me. What gives me the right to behave and think like this?

September will be another change. A new flatty who is not a previous friend. I think it's going to be really fun living with him, but at the moment I don't know. And Uni. The final year if my undergraduate degree. I have a patient who is used to the last student practitioner and how will they be with me?  Will I help? Make it worse? This coming academic year is it. The finally stage of being taught how to be a practitioner and I'm not ready for it to end. No doubt in a year my thinking will be very different! I've been in this academic cocoon of safety for 3 years, and it will be 4 this time next year. When I graduate next year I will have spent 8 years in further education. Being in the real world is a scary prospect is some ways. 

So forgive me this rather self-indulgent rant? Or maybe it's just a way for me to process and to share what's in my head which lightens the load. Thank you for giving me this space. 

Until next time.....

Lots of love, laughter and the odd smile or two. 

XxX

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

6 years and latest check up

So it would appear I have been putting off writing this as it was my 6 year cancerversary on the 19th of January and my check up nearly 2 weeks ago.

I know there is a lot I want to say, but have gone blank..... isn't the mind good at self protection...

I've been a bit of a wreck .  Christmas wasn't really a break as I got home exhausted after the term ended and both parents had the nasty flu virus.  I escaped it as I had it in October instead.  Ironically the week after I refused the flu jab.....

So when I got home instead of being a complete child and expecting everything to be done for me, I had to do everything whilst the parents were bed bound.  It would have been ok had the last few weeks of term not been manic with a nasty essay and exam deadline.  I also had an essay due and an exam on the 7th January, so I think I only had Christmas Day and Boxing Day off.  This meant that I was exhausted when I got home, continued to be exhausted and couldn't take time off to-recharge.  I then started to not sleep properly.  I was getting around 7/8 hours a night, which is fine for a 'normal' person, for me it is not.  I ideally need between 10 and 12 hours.  After about a week at home I noticed pain in my legs.  I was thrown back to when I was newly diagnosed and was highly intolerant to the chemo I was on then and ignored by my consultant, as the beginning pain was the same.  This then meant that I was sleeping even less.

Exam and essay done and I'm still not sleeping properly, I am sleeping a bit better.  I am now overwhelmed with the amount of work to be done this term.
Next major essay is due in the same week as an exam for which I have to hand in an extensive reading list of everything I have read to prepare for it. I can next have a day off the week beginning the 18th March.

I had my check up 2 weeks ago tomorrow.  I walk into my consultants room and begin to explain how I've been and start crying.  This is the first time this has happened in the 5 years I have been seeing her and am now the owner of some Lorazepam.  I haven't taken any....yet.  I have been blood typed for the protein injection trial and the hospital should find out tomorrow if I'm a match or not.  If I'm not, the halving my drug dosage for a year and then hopefully coming off it trial should be starting around July/August.

There is someone on my course who constantly whinges about having migraines and had an hour's one on one bodywork session with a tutor on Monday to help make her feel better.  I am very close to telling her to 'shut the fuck up and go home if you feel like that.  Try dealing with fucking CANCER!'

I thought this would be much more about how I'm feeling than the rather removed and distance post it has been.  Maybe everything is just a bit raw at the moment to get close to.

I'm still exhausted - can't really remember how if feels not to be tired.  I'm sick of having to juggle my life and to not have a social life because after uni I can't face it.  I'm just a bit sick of it all now, I'm 28, young and single meant to be having the time of my life in London and I'm so restricted.  It's just all a bit shit really.  I'm still living in a parallel world and I'm bored of it.  Life is passing me by and I can't fully join in and it's not fair. I'm so angry about it all and then feel so guilty because I'm still here and so many aren't.  I recently found out a girl I did a TCT photo shoot with a while ago is now terminal and she is younger than me.  And I wouldn't change it, not the diagnosis because it's made me, me.  It's just time to move on and to come off the drugs. It's all I want. Such a small ask.  Then I can stop mourning the life I lost and begin living again.

I left school 10 years ago this July.  If you asked me where I would in 10 years, I would never ever have remotely guessed it's where I am now.  I forever live in hope.  Maybe 2013 will be my year.

XxX

3 hundred and 65

So lovelies another post,

It may be because I have an essay technically due tomorrow morning (I have a 10 day extension on all my written work, so the pressure is less) which that means that I am sitting in the library gazing out of the window over the roof tops of Marylebone with the sun streaming in the window, instead of doing a reference list and a framework for the essay.

It may be that I find beautiful days in the autumn/winter more evocative than sunshine the rest of the year.  I'm not sure why, maybe it's because I am more grateful of the sunshine now, and it is something that we 'should' have in the spring and summer.  Although, I am English and have lived in the UK my entire life, so should now at the grand old age of 28 know that, just because it is spring/summer does NOT mean that the sun will shine.  Maybe its because the light is different at this time of year that I find London more beautiful when the sun is out.  Or maybe I'm just being a bit pathetic at the moment......

I don't know if any of you reading this know about the project 3 hundred and 65 (www.3hundredand65.co.uk) which I have mentioned before I'm sure, and in fact have been a part of it.  It's an incredible project for Teenage Cancer Trust which as you all know, is rather close to my heart.  I don't know if it's just me, but recently the drawings have become a lot more serene and beautiful and a calmness has descended upon them.  I'm not going to lie, I have become a bit lax at following the story itself recently, so am completely lost as to what's going on, so I may be completely wrong about my interpretation of the drawings.  I may also have this interpretation due to myself and the journey I've been on.  I think also my cancerversary is rapidly approaching and whilst I celebrate it, and do in some ways rejoice in it, I also become more melancholic and retreat within   I suppose this is only natural.

I am still also processing what I have recently discovered about myself and how angry I am, which is very much at the forefront of my mind, and I am now very aware of how I react to things.  I think this is also keeping everything fresh, which is good as it means I have to face it and deal with it, but it's a lot to deal with.  Part of me is also pushing it away so I don't have to deal with it.  A constant internal sea-saw.

Days like this, cold but bright and sunny always take me back to my time in Edinburgh, and I always think of how beautiful it is and remember walking across the bridges on my way to lectures or to meet people.  Walking and watching and smiling.  The wonderful memories of that place.  Also my diagnosis and the shock of it and the shit I had to go through.  A fabulous place and time tainted by awfulness.  Maybe this is why I am very much in my head today.

The drawing of November 29th (http://www.3hundredand65.co.uk/the-story/november-29th/) really resonates with me.  It's sometimes how I feel - alone with a massive expanse of land (time) in front of me, with no end in sight.  But with the old tree behind me, all the support and knowledge and wisdom I have with me keeping me going.  And the cat -the love and faithful friends I have, always with me by my side.

So with this, I really should go and do some work, and hope that with time, I can lay my ghosts to rest.

With much love, laughter and smiles.
XXX

Feeling a bit......

Well hello lovely bloglets,

It's been a while since I've done this and have quite a few things to talk about, but I seem to be overtaken recently by a melancholy. And spend a fair amount of my time feeling rather tearful.  I don't know if it's because I've discovered that a Teenage Cancer Trust unit is being built at the hospital I was diagnosed at in Edinburgh.  The change that will make is phenomenal   So due to this, memories may have been stirred from my diagnosis and my shit consultant and the pain that I apparently wasn't feeling.....  I think of how different my story may have been if the TCT ward had been there in 2007, but then my story wouldn't be mine.  I'm a firm believer in that everything is meant to be no matter how shit it is at the time.  Maybe I've adopted this because of what I went through.  I had to believe that there was a bigger reason for those dark months of being ignored and feeling like I was over exaggerating and feeling guilty phoning my consultant telling her how much I hurt and that I was interrupting her day and using up her time that should have been spent with someone else.  Maybe it's because I have carried that around for 5 years and only recently found out that I am the only person to have reacted like that to the drugs.  She should have listened to me.  I was right.  The relief of knowing that is huge, but the anger is bigger.

Anger.  Once of my modules is about the therapeutic relationship and one that I really enjoy, but fucking hell it drags up some big stuff that I need to deal with.  I've just written an essay with a plan of how to start to deal with my anger and to own it.  The time has come to stop distancing the feelings linked to my diagnosis that are not positive that I have put in a box for so long.  It's time to accept how furious I am and have been. Not only at the twat in Edinburgh but everything I've had to give up and what I continue to give up.  My life was stolen from me at 22 and I am still working to get it back.  And the guilt.  Felling guilty for feeling like this when I am still here and so many aren't.  Am I allowed to feel like this when I am still alive?  I am able to do what I want most of the time.  I am not hindered by severe side affects that mean I have to live with my parents or have a carer.  I feel like I am grieving and in mourning for the life that I had and lost, but then feel so lucky to have learnt and experienced everything that I have only because of my cancer.

This is the first time I have called it mine.  This is part of my plan to do with the essay just written.  To process and accept and embrace it, my cancer has to be mine.  Distancing cancer is not going to help me move on and ultimately forgive it.

And I'm so tired at the moment.  I was knocked out by a virus for 2 and a half weeks and I think it's still lingering.  This term has been full on in terms of work, and there is still half of it to go.  And the drugs.  I was hoping to have started the trial by now, but there are funding issues.... There is also the possibility of another, but my consultant is not sure that I'm on the right drugs for it.  I wait to find out more in January.

Waiting, I seem to do that a lot.  It links into my living in limbo land.  The end of it is so close and yet so far.

A friend of mine had brain cancer and a new tumour was discovered at his 6 month scan.  His surgery is tomorrow to find out of it is benign or malignant.

A guy I was at school with also had a tumour in his brain and said that my blogs kept him going in his dark times... How I don't know, either whinging about taking two pills a day or showing off about the celebs I've met through TCT and being indulgent with ranting on here to those of you who read it.  Feel selfish.  How can I be like this when they had a have a fucking tumour in their brain?

I only had 9 hours sleep last night, and admittedly sleep started at 2.30am, which may be why I am feeling like this.

So after this emotional vomit I think it's time for me to have a bath and go to bed.  I had a list of things to talk about which were without a doubt more positive than what this has become.  And part of me wants to apologise for that, and another part knows that I have to acknowledge this as without it, there is no moving forward  and forward is where I want to be.

So with my head up high, a tear rolling down my cheek, I go.  Until next time,
Love, laughter and smiles
XXX

Reflections on a friendship lost

Well I think it's only appropriate that I talk about friendship today. This has been on my mind recently, possibly due to an article that is in Grazia this week about myself and my little blonde bezzie- Crouch.

I have, as you know by knowing me or by reading this, been incredibly lucky with the support I have had from my friends since that Friday night when the phone rang at about 7pm. The love that I have felt from nearly everyone has been phenomenal and at times, when I stop to think about it, overwhelming. And whilst there are inaccuracies in the article (the journalist didn't phone to read through the copy before it went to print) the last paragraph sums it up perfectly. And whilst it has been brought home, once again, the love and support I have not only from Crouch, but by everyone there is someone on my mind who is no longer a part of it.

This person shall remain both sexless and nameless out of respect for them. Whilst I am going to mention how our friendship has fallen apart, it is not to name and shame. This person came into my life during my gap year, a friend of a friend, and we became very close basically from the get go. Admittedly our friendship was definitely one of playful abuse and sarcasm and to outsiders it seemed like all we did was insult each other, and in fact, did not like each other at all. This was not the case. We were very close and spent a lot of time together. It was also handy that our universities and parental homes were not far from each other meaning that we saw a lot of each other, especially during the holidays. Due to this, after my diagnosis, I think I leaned on this person too much. In retrospect I too bit demanding and wanted to see them a lot and they couldn't deal with this. This is the one person where my diagnosis pushed us apart instead of making us closer. It is also the one thing I wish I could change. Whist I am surrounded by incredible friends with so much love and support I miss this person and my depending on them so much has resulted in the friendship falling apart and being no longer.

I wish they they would read this and see how much I regret the pressure I put them under to be there for me not taking into consideration how they were feeling about me, the cancer and if they were coping with it. I didn't give them the space they needed to process everything that was happening and the more they backed off the more I tried to see and speak to them. This has resulted in them no longer responding to calls and text messages where I try to arrange to meet up or to catch up over the phone. I have now given up on trying to make our friendship work and no longer try to speak or see them. I have deleted them from Facebook and whilst their number is in my phone, my stubborn side has kicked in, and it's a number to ignore.

So forgive me for this rather indulgent ramble about the one person I have lost when I have gained so much. It's very rare in life you see how much you are loved and I get to see it all the time. Whilst many would see a cancer diagnosis as a punishment, it is for me, a blessing. I know I am surrounded by those who love me, care for me, and fight my fight with me very step of the way. And whilst this is about a frienhip lost, it is also a recognition of everyone one of you who is in my corner and with me evey moment of every day.

As always, with love, laughter and smiles,
XxX