Stuck

Well it's Monday again. Can't believe it. I have been going through my old blog posts trying to find one to tweet for today's Monday Blogs but after reading so many, I can't find one that suits my mood today.

I have read a fair few of my old posts as I'm in the car going to my grandmothers for lunch which involves driving across the UK from Nayland (Suffolk) to Bourton on the Water (Gloucestershire).  Joy. I feel like a bad grandchild because I can't be arsed. I'm tired. Last night a submitted one of my essays at 20 to midnight. 44 pages and the majority of it doesn't get marked, but it all had to be done as one part contributed to another. Fucking critiques. And that's what my dissertation is. The essay was only critiquing two papers. My dissertation is 6-10. Fuck. Time. I never seem to have enough. I used my 2 week extension for the critique which means everything else has been pushed back. I will aim to get one of my case studies done by the 2nd Jan, deadline is the 6th and use my extension for the other one due on the same day. I do LOVE how my deadlines are always at the same time. I also have an exam on the 8th Jan, my patient to prepare for on the 13th Jan, dissertation stuff to do, journal writing in preparation for another essay. It's non stop and I'm exhausted.

I went to see my personal tutor just before coming home for Christmas and as I was talking she said to me it sounded like burn out. I am burnt out. I am fucking exhausted. I'm not sleeping well which only makes it worse. My legs have started aching because I'm so tired. I'm fed up of it. My 7 year cancerversary is rapidly approaching. I can't believe it. 7 years. I know I should be grateful and happy. I have had 7 years when others have not. And I'm fed up with whinging all the fucking time about being tired.

My older blog posts are quite short and upbeat talking about fun things and everything being great. It wasn't. I had shit care from my consultant in Edinburgh and am now beginning to think that about my last London consultant. I'm more honest now. It's good. It's me processing. And acknowledging.

I should stop now. I should go. I will be back, and I look forward to posting about joy in the future. I'm just a but stuck at the moment.

With love and laughter- laughter is so important.
Me XxX

Will I ever be able to let go?

So my lovely bloglets,

I feel that of late I have been a bit whingey, and that I am not necessarily allowed to be.  Being back on the chemo is a bit shit.  I am tired and all I want to do is eat and sleep and eat a bit more.  Work is piling up because I am not able to sit down and get on with it.  As I should be now.  So I check twitter for a minute and then look up and an hour has gone.  Look to see how many people have looked at this and my jimmyteens video blogs.  Check my junk folders for emails I might have missed, or allow myself the time to rest that I need, but should not take. So feel guilty.

An extra day a week at Uni seems like so little, but its impact has been so much.  Not only with me, but the rest of my class as well.  Last week only 3 of us out of 15 turned up for a lecture.  And I want to punch them when they say that they are tired.  And anger is not good.  The only person it impacts on is me.  And I walk around with all this negative energy with my mind on a loop.  You haven't got a fucking clue. You don't live with cancer and the treatment I go through.  But I can do so much compared to some.

A very lovely person who I interact with but do not actually know carries a much heavier burden that me, but does it with so much grace.  There is so much forgiveness there.  But maybe it's because they are further down the line.  There is more life experience and greater illness which may mean that the appreciation for everything is at a higher level than I can do at the moment.  Their last blog was about their father, and lack of.  I am so lucky.  I have my whole family as one unit, and whilst I get pissed off with each of them for different reasons.  They are there.  We are one.  And it's just us.  So many do not have this, why can't I just accept what I have and be joyful for it?

My birthday was last week and I was overwhelmed by the messages I received from people.  My phone was going all day with text, facebook and twitter notifications due to people saying happy birthday.  Many do not have this, I do, and yet I am so begrudging of so many.

So many I know have had loved ones taken away from them early because of cancer, I too, have not escaped from this unscathed.  But I still have my parents, my grandparents, aunts and uncles.  There will be no one missing this Christmas and my gorgeous little brother will be home, so my little unit will be complete.

What is a bit of tiredness?  Why do I let it rule me so completely?  I hope as time progresses I am able to let go of the anger and the un-fairness of the situation, and can focus on the positive.  There is so much of it.

With love, and a little laughter,

Me, XXX

Reflection on Change

The last few weeks have been quite tough. Processing that my consultant is going and the change that will bring. I struggle with change yet life throws it at me quite a lot. It's funny how life has a canny way of giving you often what you don't want because you don't like it. Forcing you to face up to it and change yourself and therefore become more flexible and adaptable.

Unfortunately the lower dose of drug is still having an impact on my energy levels. I'm adjusting to it and wish I was as I was for those few weeks that I had my life back. But maybe it's also so I prioritise and look after myself. I have however found doing anything I'm meant to do lately very difficult. I don't know if it's because I'm fucking knackered again or because winter is showing its face and I want to retreat inside and hibernate and rest rather than plan for patients, go to lectures and do the crazy amounts of work I have to do. So I don't. And then I make it worse for myself.

Yesterday one of my patients was booked in, they had changed their appointment and for some reason I didn't get the email letting me know. I therefore hadn't really done any preparation work and was completely thrown by it. There have been complications with this case and I had a bit of a strop saying I was fed up about the way it has all been a managed etc and it's not fair on me or the patient. By the time they came in I was in a better mood, possibly because the caffeine had kicked in and because I had adjusted to the change in the day. More change.

After the consultation I was given really amazing feedback and it has once again confirmed that I am doing the right thing. All this change is meant to be because without it I wouldn't be where I am. And I am meant to be here doing what I do. 

I can't believe it. He's LEAVING ME!

Yesterday was Thursday and my clinic, so back to the Hammersmith I went.  With my lovely army friend who thankfully has returned once again from the lands of death with all his limbs intact.

Check-up was fine – haven’t put on any weight, thank fuck, because let’s face it, that is probably my biggest concern.  And yes I know that probably isn’t very healthy etc etc etc blah blah blah, BUT I think it’s probably a better thing to worry about than if the cancer gets worse or my bone marrow kicks in again or the million and one things I could worry about.

As it seems to be the trend over the last few check-ups the nurse calls me for my bloods who completely destroyed me in July so I don’t let her touch me.  And funnily enough, she remembers that I won’t let her do my bloods.  The clinic was pretty busy yesterday and when she called me I went and as I got on the scales I asked for someone else to do my bloods.  She said that it was ok   today, but as I could see the clinic is very busy as two other hospitals have merged with the Hammersmith so I can’t always chose who does my bloods.   She also made it sound like they had merged that day, it had in fact happened last year.   Basically I was being a difficult patient.  The nurse who was doing my bloods said not to worry as I apologised and explained that I am very nervous of the other one touching me as she really damaged me before.  I had bruises for 3 weeks after the other nurse attempted to do my bloods and for that day I couldn’t have my hand below my waist and my hand hurt so much where she had inserted the needle for attempt number two….anyway.  The point if this is that she is NEVER going to do my bloods again, and I have the right as a patient to request this and she can fuck off.

I did have some bad news.  My amazing and lovely and hilarious consultant is moving to America.  FOR FUCKS SAKE!!!!!! I CAN’T BELIEVE IT!!!!!!!!!!!!!!!!!  He said I could carry on seeing him so I asked him to pay for my flights.  Funnily enough he said no.  He has referred me on to another consultant and he said, I shit you not, ‘they are a much better doctor than me.  If I had CML I would want them as my consultant.’  So we shall see….I’m back in February.  I did ask him if the new one has the same approach as he does and he said that they should.  He also told me that in France people who get taken off the drugs do have slight fluctuations but as long as it says below 0.01% (or 0.1% can't remember now) they are left off treatment, so maybe that is something that my new consultant will be open to….  He also said that ideally he would like me to stay on treatment for another 9 months to really stabilise things, so we shall see.  I feel positive about this but a bit upset that he is leaving as I finally feel like I’m actually being listened to.

Nothing much new to write about this time, feeling quite tired today, and have so much work to do.  Fun. Oh, I was going to rant about movember and for some reason it’s really pissing me off this year.  I’m not sure why.  Maybe I’m just allowing more feelings and being more honest about them.  I know it’s important that people are aware of the various types of cancer and that people (men) talk about them and go to the doctor and get checked out.  But, asking for money for growing a tash.  Really?? REALLY??????  Go and do something a little bit more impressive than something you have the innate ability to do so.  Run a marathon or climb a mountain or something.  Maybe it’s just because I’m really fucked off that I live with a chronic disease that has a monumental impact on my life and there is no visible sign of it. I was on the tube and exhausted and really needed to sit down but didn’t say anything because I have nothing to show to prove it and no one offered me their seat because I am a ‘healthy young(ish) woman’ not pregnant or have a walking stick etc.  And then on the flip side, of course I am pleased that this is the case.  It’s very difficult and I’m just a bit fed up at the moment.  And on that note, need to eat and think about bed as I have had to cancel on a friend again because I can’t be arsed to go out because I am, for a change, knackered.

XXX

A little escape

It's funny that at a fairly pivotal point of my life in terms of a new consultant, new approach to my treatment, starting a new drug dosage and getting really not great results which were a massive shock and have made me start thinking. Will I ever actually come off treatment? Anyway, that is not what I was going to talk about and I don't want to go there yet.  A pivotal moment in terms of me and the big C and I ended up going to Edinburgh spare of the moment for 24 hours, back to where it all began. 

My flatty was going up for work and due to various reasons he ended up needing to fly minutes after booking a train ticket (1st class. Nice) so offered it to me. I did think about saying no as I have stupid amounts of work to do and haven't been well so am a week behind. On that note, the fluey virus thing going around at the moment is fucking horrible. Flatty came home one evening and asked what was wrong with my neck as my gland was MASSIVE!!! Anyways, back to pivotal. Haven't been this rambly in ages!

So. I phoned home. Explained to my Ma. Free 1st class train ticket and a night in the Balmoral. She said. Don't be a fucking idiot- go!!! Well actually, she didn't exactly say that, but if I didn't have a bit of poetic license this would be fucking dull. So ignoring the work load and bringing some with me to appease my guilt I got on the train at 9.30 on Thursday morning to Edinburgh. Aaah guilt! That's why I've been eating EVERYTHING for the last couple of days. Been comfort eating to appease the guilt!  Oh for fucks sake Katherine, get on with it. 

Edinburgh. A lot happened there. And in fact I went past the flat I adored and lived in for 2 years. And it was in that flat that I got 'the phone call' and my life has never been the same again. 

I love Edinburgh. I have since the moment I arrived there in September 2004. I can't explain it. The city just makes me smile and feel happy and so glad to be alive. And the weather was perfect as well. On Thursday I spent a few hours wondering around taking a million photos of things I have taken a million photos of before my flatty arrived and then on Friday we drove past Barony Street and I was so thrilled to see that Something Fishy, the fish mongers, and so many other independent places are still open. But it also made me feel quite sad and nostalgic. I had a moment of being me at 22 again living in Edinburgh and being so happy. Not that I'm not now. It was different. I was so care-free and my big choices were what to drink/eat/wear that night when I went out. And then January 19th happened. 

I sat on top of Calton hill in the sunshine smiling and just taking in the city. Saying hello to Arthur and watching the sails of a boat on the Firth of Forth. And when my flatty arrived I told him all my favourite facts about the burg. For example- Arthur is in fact, an extinct volcano. He was really thrilled about this….

I was only there for 24 hours and it was a busy one but I felt, even for that short time, connected with the city and with the earth and content with where I am. 

The last few weeks (months and years) have been a bit rocky as my talk at Find Your Sense of Tumour highlights (http://jimmyteens.tv/2013/10/24/fysot-13-the-journey-of-a-20-something-year-old-mans-leukaemia/) but I shall be eternally grateful for this little escape back up to the north to a place that has a very special place in my heart and always will do.

So I give this picture to you. My wonderful Edinburgh. And with it a huge thank you to my flatty for allowing it to happen. 

With love and laughter,
XxX

A reality check? How should I be?

I have been thinking about what to write over the last couple of days.  Well actually the last week or so.  I was going to talk about the anger and frustration that has been bubbling up to the surface since I started seeing my new consultant and he made decisions that could have been made before.  Why didn’t my old consultant be more decisive and take more action?  I have, since Friday (it’s now Sunday) been reflecting on this quite a lot.  Sometimes it’s a real arse having a mind that automatically looks at both sides of the story.  It means that I’m never fully on my side as I then look at the alternatives and how the other person may have been feeling and why they did what they did etc.  This is probably a great tool to have as a therapist and as a critical friend to my course buddies, but when I want to be truly selfish for myself, to feel upset and angry and let down, I always water it down by thinking about the person that has triggered that particular state. Maybe it’s also a self-protection mechanism as well.  By looking at the other side, I can’t slump and dwell because I also see the other side.  Or maybe it’s just because I’m the middle child.  The middle of the see-saw going one way and then the next.  Understanding both sides of the equation. 

I had, until Friday, been angry and upset at my old consultant, and now, maybe not so much.  At my last check up just over two weeks ago I was told to phone the clinical nurse specialist in two weeks to find out what my Leukaemic rate is after being off the drugs for a month (at that point).  I was crushed to find out it has risen from 0.009% to 0.022%.  Maybe only small numbers, but a massive amount in the space of 4 weeks.  What does this mean?  Well that the drugs were doing their job and well which is a good thing but also, does it mean I will be able to come off them ever?  I’ve been really good with my diet, avoiding sugar as much as possible.  And whilst I have had a few slip ups, no more than once a week, if that, over the last 6 weeks.  I do feel a bit like what was the fucking point.  My brain wants me to be free of treatment, I can’t tell you what it’s been like over the last 6 weeks to feel alive again, and now what.  I find out more tomorrow about when to start taking them again and at what dosage.  I might be put back on 40mg instead of 50mg to see if that helps my fatigue.  Maybe this is why my old consultant didn’t take me off the drugs or lower the dosage because of this happening.  I knew at my last check up that I would have to go back on them, but I’m shocked at how much the leukaemic rate has risen.  I feel like my body has failed me and doesn’t want to get better.  I’ve been in such a good place, even with this fucking horrible virus that is going around, and now I feel. Well I don’t truly know.  Upset, angry, disappointed, frustrated?  Yes all of these.  Do I also now feel resigned?  Should I give up the hope of coming off treatment and just accept that this is it.  This is my life?  I don’t know.  I don’t like giving up.  I’ve been fighting this battle – normally a phrase I fucking hate when it’s in association with cancer. Oh he fought really hard and lost – such a tragedy.  Or I fought and because I did it so well I won.  Well fuck that.  Everyone does their best with cancer and sometimes there is a good result and sometimes there isn’t and it’s got fuck all to do with how hard they fought or didn’t.  And here comes the other side of the argument… well in some cases this isn’t true if they continue to do things that are known to be detrimental to health like smoking etc.

I haven’t been fighting cancer for the last 6 years 9 months and 1 day.  My battle has been the drugs.  The cancer is fine, and hasn’t ever really made me feel ill.  All the bad shit is the drugs.  Being intolerant to the first lot and these making me chronically tired.  And I suppose, a little bit of a fight against the dormant Leukaemic cells within me.  But I’m not angry at them, or don’t like them.  Not consciously anyway.  They are a part of me and I love and accept them.  I don’t see them as doing damage.  They are there.  But it is also because of them that I am on the drugs.  It’s a bit of a head fuck really.

I am so thrilled that my consultant took me off the drugs and gave me a holiday, but I suppose it’s now time to get back to real life.  I am hopeful that I won’t be quite so affected by them after having this break, but I am wary.  I want to be positive and to think that I will be fine, however I also have memories of the past and these are hard to erase and forget.

I will, as I have always done, carry on.

With love and smiles,

A slightly apprehensive,

Me XXX

The Journey of a 20 Something Year Old with Old Man’s Cancer

Diagnosed in a day in 2007, it’s not the usual story when talking to people, especially young people with a cancer diagnosis.  I didn’t think much of losing weight fairly gradually over about 6 months, other than eating a bit less, and exercising a bit more, or the handfuls of hair that came out in the shower when I washed it. Nor did I think much of being noticeably more tired than usual.   But nearly feinting twice, that was a bit odd.  In fact it was that which prompted my visit to the doctor.  In the space of a week I felt like I was going to feint twice.  Once in the kitchen of the flat I was living in in Edinburgh, during my third year of Uni and once was in the second lecture of a brand new module.  Highly embarrassing asking the lecturer if I could leave the room to sit down as I felt I was about to keel over.  Nothing like being branded the class hypochondriac in week two of the module….  So Friday morning dawned and I was woken up by my flatmate with a mug of tea to ensure that I made it to the open surgery at the doctors.  I remember sitting there feeling quite out of it, not really able to focus on much and just feeling, well, fucking exhausted.  When I was called in I explained to the doctor that I didn’t feel ill but I didn’t feel well.  My hair was coming out in handfuls when I washed it and I nearly feinted twice in a week.  She said she didn’t know what it could be so took a blood and urine sample to be tested.  I remember walking back to the flat and phoning home to say that I had been to the doctor and she thought I could be glucose intolerant.  My first thought was shit.  No more drinking!!  And then forgot about it for the rest of the day.  That night, whilst in the middle of making a highly nutritious supper of super noodles which, thinking about it, I haven’t eaten since, as I couldn't be arsed to cook anything, the phone rang.  A woman asked if she was speaking to Katherine Ruane and did I have a blood test today?  I said yes and she said they had the results.  I said, great!  As I was told to go back in a week for them.  She then told me I needed to come to the hospital now.  I asked why.  She said she couldn’t tell me over the phone so I said that I wasn’t coming in.  She then said that someone else would ring.  I then phoned home and burst into tears saying that they had found something.  My father immediately responded saying of course not; don’t be silly, you are fine.  The next call was I think a doctor, but to be completely honest, I can’t remember, and he offered to come and get me and take me to the hospital.  I explained that I would go; I just needed to know what was wrong as my parents were over 400 miles away and I wanted to phone them and tell them what was going on.  He said he’d ring back.  When he rang back he said because I seemed to be taking it well – shock is a wonderful thing -, he told me they thought it was cancer.  I said I’d be in soon.  I then phoned home again and told my father it was cancer.  I asked if my mother was home yet.  She did this very clever thing of disappearing in the supermarket for hours on the way home.  By this point I had two friends over, one to drive me to the hospital and the other to help get some things together as I didn’t know how long I would be in hospital for.  After about half an hour my mother still wasn’t home so I rang her mobile and told her.  She was in the bread isle.

Hospital was pretty fun.  There was Doctor Dave who used to hang out with me and get in trouble because he watched DVDs with me, brought me proper mugs of tea rather than those pathetic little two mouthfuls and it’s gone cups that were brought round,  and flirted rather than do any doctoring.  The nurses were also amazing.  And I had my own en-suite room, so all in all I loved it.  I didn’t realise the reality of the situation and that I was actually really ill because I basically still felt fine …. My consultant on the other hand was fucking  awful.  I didn’t want to do her trial so after her pressuring me for a week to do it and only explaining everything is doctor, I decided against it because of possible side effects, and thank god I did! and she sent me home straight away.  That was just as much of a shock as being told to go into hospital...  I had become used to my safe cocoon and hadn’t left the room that week and was told I could be there for weeks.  I had a wonderful relationship with George, my drip, and even got vaguely used to him beeping every four hours.  I still sometimes hear it in my head….  I have never lost my hair, although my sister said she would shave her head if I did which to be honest, I’ve always been a little bit upset that this didn’t happen.  And I’ve never been in an ambulance which upsets me even more.  Both siblings have and I was the ‘ignored middle child’ until my cancer diagnosis.  Apparently if I hadn’t gone to the doctor on that Friday morning I would have been in an ambulance within 48 hours as my body was gearing up to collapse.  I’m quite upset to be honest that I did go to the doctor because this would have made it a much better and dramatic story! 

I’m not going to focus on the complete and utter lack of patient care from my consultant.  She didn’t know what to do with me as I was at least 40 years younger than her other patients.  In Edinburgh I called my clinic gods waiting room because everyone was about 80 in wheelchairs with wheelie oxygen tanks and then there was me.  Aged 22 and able bodied.  Or the fact that I was so intolerant to the pill form of chemo I was on and she ignored what I was saying.  Daily.   The side effects started within a couple of weeks.  My skin started to get really prickly and itchy and sore and then there was pain.  I can’t really remember it.  I had to move back home as I couldn’t look after myself anymore.  As I was told that the drugs were so amazing and fantastic and wonderful and that I would feel better than ever and never know I had been diagnosed and wasn’t I so lucky etc etc et blah blah blah I attempted to stay in Edinburgh and carry on with my degree.  Yeah fucking right.  It was hideous.  So home I went taking dhydracodeine and ibuprofen every couple of hours and throughout the night as every time I turned in my sleep the pain woke me up.  I had an hour and a half’s pain relief a day.  Two 45 minute really hot baths as for some reason that stopped it.  It was these baths that got me out of bed in the morning and downstairs, and then up the stairs back into bed at night.  I phoned my consultant every day telling her how I felt and she just upped the pain killer dosage and frequency.  She also said that I shouldn’t be feeling like that as the research showed that I wouldn’t.  I think this was another reason my consultant ignored what I was saying.  I was too young and ‘healthy’ to feel side effects.  I was taken off that chemo on Easter Day 2007 by the on call haematologist at the hospital as I was crying down the phone so much I couldn’t talk.  It was only about 3 months, maybe less, but it felt like eternity and at times I thought death would be a relief.  I have since found out that I am possibly the only person who has reacted like that.

So the drugs.  My aim since day one has been to come off them as they make me so tired.  Chronic fatigue is SO fun.  I am currently off them to see if it makes any difference and I feel alive again for the first time in so long.  I can’t actually remember the last time I felt like this. I have been on treatment for 6 years and 8 months, nearly a quarter of my life and I have been living in a fog. 

Guilt.  Huge amounts.  For still being alive when others aren’t.  For having basically completely non-invasive treatment. Can I really whinge about being tired?  I still have my own life, don’t have a carer or live at home, even though my mother frequently tells me I can move back home whenever I like.  I think she is in denial that I am 30 next year… Oh shit, wasn’t going to say that, will NEVER be asked to do anything TCT related again!  And thinking about it, maybe I shouldn’t act like a 5 year old every time I go home….

And Anger.  Huge amounts of anger.  My life was stolen from me at 22 and I’m still trying to get it back. In order to cope with the day I need 10-12 hours sleep and I have become a master at juggling my time and what I do.  Continuously having to bail on friends as I can’t face seeing them as going to the bus stop is just too much.  I have phoned home at times in the middle of London and started crying as I can’t face walking any more to the bus stop or tube station I need to get to, to go home.  Anger at people not understanding I’m tired, or getting angry when they try and sympathise because I think you haven’t got a fucking clue.  Anger at myself for thinking I’m being selfish and whinging all the time. 

Limbo land.  Sick of not knowing when I can come off the drugs permanently.  There was meant to be a trail over a year ago……  I finally feel like things are moving forward with a different consultant at the Hammersmith who halved the dosage to see if that helped my tiredness and then took me off the drugs for a month to see if they did.  It has helped so I’m off them for a further 4 weeks.  I’m fed up of technically being in remission but still needing treatment. I sometimes wish I hadn’t responded well and had the bone marrow transplant I was originally down for but then who knows what could have happened.  I often feel like I am living in a parallel dream world and this is not really my life, and the reality is that I am completely healthy, able to do what I want when I want without having to continuously bail on people because it gets to later in the day and I’m too tired or the thought of going out and doing something is too much. 

Fertility.  The first lot of drugs didn’t impact on fertility but they don’t know, or didn’t know about the current lot when I was put on them.  Luckily my London consultant was on the ball enough to ask me if I wanted to have children and within 3 days I had to decide on eggs/embryos or ovarian tissue being frozen.  I then found out ovarian tissue wasn’t an option so eggs or embryos.  I was put under a lot of pressure by the IVF consultant to have embryos frozen and I also had pay so I had to borrow the money.  I want to have whoever I end up withs children, not a sperm donor – why would I want a random man’s child? , so I had to be strong and stand my ground.  The clinic was quite amusing though because of the looks I got when I went with my father.  Was quite tempted to go round the waiting room and explain to everyone he was my father, not my boyfriend or husband.  Ironically in Edinburgh I refused a trial because of possibly having to inject myself and I ended up having to do it anyway.  And before 9am.  Joy.  So I have, I think, 17 eggs frozen and after paying the first lot of storage myself with the help of Macmillan, my PCT now pays for it. So, having children.  At the moment I am single and at university again training to become a Naturopath which is a complementary/alternative therapist and don’t have time for a baby at the moment.  But what if I did.  Am I fertile?  I don’t know and don’t want to know at the moment.  Finding out I’m not is too much to deal with.  But I can’t get pregnant when I want; it’s up to my consultant and when I can take that amount of time off treatment.  My life is dictated by the hospital. 

Change.  I hate change.  Who will I be when I am not longer a cancer kid.  I have done so many wonderful things and met so many wonderful people because of my diagnosis.  Will I still be special?  Will people still want to listen to what I have to say?  I joke that I was the ignored middle child but at a level it’s not a joke.  Cancer has given me the opportunity to truly shine.  Maybe this would have happened anyway but that is another me in a parallel universe. I wouldn’t change this.  I would change aspects of it in a heartbeat.  Having cancer has made me me.  It has meant that I can be here on this stage sharing with you what I have been through and what goes on inside my head.  It has meant that I can make jimmyteens video blogs and some of them have been watched 100s of times.  I am a peer reviewer for the NHS and can directly impact on others care in hospital ensuring that what happened to me can be prevented.  I have been given a voice to speak for the lost tribe, which is us, all the cancer kids who are not known about as people think only children, older adults and the elderly get cancer.

Social isolation whilst still with friends. Not being with other cancer kids.  This is a tricky one as I, in the beginning, purposefully distanced myself from other cancer kids as I thought it would be me and then a load of bald people with drips.  I was terrified of that and wanted to surround myself with familiarity and my healthy friends.  I also wanted to be the only special one and let’s face it, I don’t want to meet someone female with CML who is younger than me because they will steal my thunder!  I have also, therefore, felt very alone and isolated as I don’t know anyone at my clinic and they are all old.  I rarely see the same face twice.  But saying that, at the hospital a couple of weeks ago I saw a face I wouldn’t mind seeing again.  We both kept on looking at each other, I think it’s because we were the youngest there… I reckon he was about 35, tall, dark and handsome…anyways, enough about him.  Maybe he will be there again…..When my friends have done their best to be supportive and give advice I do get frustrated that they don’t have a fucking clue and then feel like a hideous friend.  Because I am lucky, I do have the most incredible set of friends who have stood by me and supported me every step of the way but no matter how hard they try, they don’t get it.  Why whine to me about your job that you don’t like?  Get another.  Unhappy in your relationship?  Dump them.  These are all things in your power.  I’m helpless in mine.  It’s down to the consultant and the pharmaceutical company and trial research as to when I can come off treatment.  Because, no matter what else happens, I am determined for this to happen and due to this I have made as many changes as possible within my power. 

I stopped drinking, not immediately, I did become just a little bit of a drunken liability, I think I was trying to drink all the alcohol in Edinburgh to prove I was fine with everything!  I also try to avoid sugar as much as possible and make a mixed fruit and veg juice for breakfast with protein and chlorella powder.  It actually tastes much better than it sounds!  I also implement as much self-care are as possible learnt through my degree and have a written blog and do jimmyteens videos to help process what’s going through my head and to get it out..  It’s also opportunities like this where I can share my story and hopefully inspire and motivate and give insight into what it’s like for us, just trying to get on with our lives and dealing with being cancer kids at the same time.  It is also all of you who motivate me to keep going and inspired me to drag myself around the streets of Newcastle for the Great North Run in 2009 after attending FYSOT in 2008 and finding out about TCT for the first time and being completely blown away, and then most recently around London for the Marathon last year. 

 And it’s because of you guys that I feel so honoured to be up here to share my story and give meaning to why I was given a cancer diagnosis  of old man’s cancer – chronic myeloid leukaemia on January 19^th 2007.

At the top of the mountain

I should be feeling happier, but actually at the moment I just feel a bit pissed off.  It might be due to reading out my talk that I’m doing next week at Find Your Sense of Tumour out aloud down the phone to my mother.  Bringing up everything again.   Crying again.  But it’s good.  I need to do this to process and come to terms with, and be at peace with it all.  And now I feel angry and irritated and if I wasn’t alone in the flat at the moment, I would be picking a verbal fight without whoever I was with to let off steam.  So instead, I shall type, and hopefully by the end of this I will feel better.

I also feel fucked off that people who have only been in my life since my diagnosis have only known the tired, grumpy and whingy me.  And those that are no longer in it have missed it, and this is not fair.  Fucking hell.  Whinge whinge whinge.  I suppose it’s a shame that… well life is what it is, and we are all on a path, regardless of what it is.  And I’ve felt alive and amazing and like me again for about 2 and half weeks now and I’ve got a further 3 and a half weeks off the drugs but then what happens?  Will it be the same?  Will having a break mean that the side effects are less? Will I descend back into the fog again?  I feel like I’m at the top of the mountain.  The climb has been long and tough and at times I’ve wanted to give up, but I carried on.  I persevered and I made it.  And the view.  It’s amazing, like nothing I’ve seen before, or at least not for a very long time and I can breathe.  Will the descent be a quick tumble down, back through the clouds?  Or will it be manageable?  Change and not knowing.  Two things I really don’t like and fight against, but are constantly put in my path to deal with, even though I often feel like a toddler lying on the floor kicking and screaming.  Maybe that’s what I should do to let it all out, rather than just feel like it.

Thursday was my check up and my consultant has a dilemma.  How long will he leave me off the drugs as it’s clear it is them that make me tired and not depression.  It has been found that with pregnant women, the leukaemic rate stays stable for about 6 months but then it begins to rise again.  I will have to go back on them – so he says, but at what point?  And will I be worse physically and/or emotionally?  I have asked that if it stays stable at 0.009% is that not low enough to remain off the drugs as long as it is stable and doesn’t go up?  Apparently I gave quite a good argument as he seems to be considering it.  Time will tell.  But for now, I shall enjoy the next 3 and a half weeks.  Remain positive and happy; because whilst this does not reflect it, I am actually over the fucking moon at the moment.  It’s so incredible to be listened to, and truly listened to.  Too have active decisions made that are best for me and how I feel.

Do you know what?  I feel better now.  The tightness has gone and my breaths are once again low and deep.  So thank you for giving me this space.

Until next time dear bloglets, with a great big smile,

Lots of love and laughter,

XXX

I feel alive!!

So, I did in fact write a brand new post a couple of days ago and my computer decided to refresh the page and I lost it.  Stupid fucking technology dickhead computer.

I went to a Shine event last week and it was interesting to discover that people not only in their 20s and 30s but also their 40s want age appropriate care!  I have never thought about that…. So I think I have found (another) place to share my experience and hopefully help make things better.  At the event I met someone who also blogs and he said that he never posts the same blog in two different places which made me think and feel lazy.  I have then thought about how busy I am and my energy levels and have decided that it’s better to post the same thing in two places and to reach a wider audience and hopefully have a positive impact, than only post in one place less often because I can’t be bothered to write a new one, or a slightly different one to put in another place.  Having said that, I don’t know if I will put this on my blog blog, but I think that actually I might….. And I clearly have decided to.

So.  Exciting news.  I FEEL ALIVE!!!!!!!!!!!! WOO FUCKING HOO!!!!!!  This is the first time I have felt like this, since, well I can’t remember when.  It has taken a good couple of weeks since my consultant took me off the chemo to notice any change, but I can honestly say that in the last week I have felt different.  Not so tired and more able to speak and talk and think and walk at the end of a long day.  Today I was up early and didn't go to bed early enough last night, had a full day in clinic at Uni and had an intense afternoon taking my patient and assisting with another.  I then went out with a friend for a cup of tea to catch up after.  It’s now 20 past 9, and admittedly I do feel tired, it’s not the same tiredness I had before.  I actually feel able to think and talk and don’t just want to cry.  The exhaustion hasn't taken over, and because of that I feel amazing!  I feel truly positive and excited about my check up on Thursday which hasn't happened in ages.  I know I will have to go back on the drugs, but I'm hoping I can negotiate a few more days off whilst they wait for the Leukaemic rate result to come back and to make their decision after that.

As its 9.25 I should probably stop this and get ready for my day tomorrow.  Also need to print my talk for Find Your Sense of Tumour (Teenage Cancer Trust conference) so I can go through it and see where changes need to me made etc and most importantly, so it makes sense!

Hope all is well with everyone,

Lots of love and laughter,

XXX

Change - I don't like it (and yes I know you guys know this)

Well my lovely bloglets,

I have just written the following post for Leumaemia and Lymphoma Research, so I thought it would be a bit fucking rude of me not to share it with you!  And I know it's a topic I may have mentioned once, or twice, before.....

So it's funny, well depending on your point of view I suppose, I don't like change.  But at the same time I want it.  Change is something that has come up a lot over the last 6 and a half and a bit years.  It's something I'm desperate for, but at the same time don't want it as I am worried and maybe scared about who I will be when I am no longer a cancer kid.  What will make me special and unusual?  Will people still be interested in me and what I have to say?  I now have a patient in my University clinic and they were saying how much they don't like change and I was giving them all this advice.  Brilliant though my advice was, it's something that I need to take on board and implement myself.  Change is the only thing that is definite in life.

A Uni friend of mine sent me a link about a talk this week on fear of change so I have booked into it.  Maybe this will be the start of my journey of accepting change.  And I feel like this may be the right time.  After nearly 3 weeks of being chemo free I have begun to feel truly alive again.  I've been up since 8 and sorted stuff out at home before going into Uni for an afternoon of body work and it's 9.25 and you know what.  I don't feel that tired.  I can't believe it!  I can't remember feeling like this.  And I don't want it to go.  I have the hospital next week and I'm going to see if I can negotiate a few more days off the drugs to wait for the leukaemic rate results, just to see what they are like.  I know that I will have to go back on them, BUT if my rate is still low, maybe we can see if other routes are possible....

I did a new jimmyteens video blog this morning (I will let you know when it's up on the site) and I was quite surprised as I became quite upset talking about change and how I am and that whilst there are parts of my cancer journey I would change, I wouldn't change my diagnosis.  Maybe it's because I have this new feeling of life that more processing has been able to take place.  I know I will be processing this for many years and may never fully process it.  But I hope that my babbling at a camera and writing here (and my other blog) will help even though what I think and type is often nonsensical sentences joined up together with no coherence (or so I feel)  But it enables me to process everything that little bit more.
I spoke at a Macmillan event and I have been asked to get involved with young people stuff which is really exciting as I often (always moan) that I'm too old for TCT and am no longer in the spotlight and once again ignored.  I can't remember if I've mentioned it, but I 'joke' that I was the ignored middle child until my diagnosis.  But being asked to do stuff makes me feel like I can shine again and that there was a purpose for my diagnosis.  I can help make a change for the better for other cancer kids and that we are no longer the lost tribe.

I'm not entirely sure what my point was with this.  I did have some amazing ideas, as usual, on the tube.  I should write them down....

So thank you for giving me this space, and as always with love and laughter,                                                                
XxX

Reflections on new life and life lost

Hello lovely Bloglets,

I'm not entirely sure where I'm going with this (as I normally do, HA) but I feel the need to write, so that is what I am doing.  I am also going to be cheeky and put the exact same post up on the Leukaemia and Lymphoma Research website aka MY NEW BLOG!  

Still tired.  Had two nights of really bad sleep and I'm knackered.  All I want to do is sit on the sofa and eat chocolate biscuits (but I'm off refined sugar whilst I'm not on treatment for these 4 weeks as sugar and cancer are such good friends), curled up under my blanket and watch DVDs.  I might still do that, well the sofa and DVD bit, and not go to the supermarket or write my talk for the Teenage Cancer Trust conference Find Your Sense Of Tumour (FYSOT) which is less than a month away..... nothing like procrastination.  I have about 20 minutes and whilst I have a vague idea about what I'm going to talk about there is so much, and it's quite a daunting task.  Also, I'm not good at planning what I'm going to say, and every time I spoke for TCT at an event, whatever came up came up and that's what I mentioned.  Planning what I'm going to say seems very unnatural for me and not fake, but not the real me. Maybe I'm worried I'll lose a bit of me if it's planned.  Or maybe this is all bollocks and I just need to sit down and write it.

People coming into and out of lives (mainly mine) is still on my mind a lot.  Still thinking about the boy but if we are meant to be we will.  And I truly believe that.  Not just about relationships but life.  I do think that there is a path pre-planned and everything happens for a reason.  I'm sure I have mentioned this before. Yesterday I went down to Hastings to see a friend who has recently had a baby and of course, he is gorgeous.  Only 3 weeks old but I still got a smile out of him.  We were great friends when we were little, she and her mother lived with us when my parents ran a B&B as she went to a school near the house, so during the school term I had a live in friend.  It was fucking brilliant!  My parents sold the house, and as it so often happens, we drifted.  Not long before I moved to London she found me on facebook and now she is married to someone I went to school with when I was little and now they have a son.  Life does funny things, but always draws back the people who are important.  

My friend Jack died just over 3 years ago.  His death hit me really hard.  I'd only met him a few times but we bonded and had such a giggle together.  He was so positive and such a fighter..... And I can't continue to get upset about it.  He had his path.  Remembering someone with a smile is so important.  And then me.  Back to the guilt and am I allowed to moan and whinge about my cancer journey?  It's so easy compared to some. But it's also forever hanging over me and dictating what I can or can't do.  But I'm still here, and this is what I should be so grateful for.  And I hope that one day, it will be me holding my baby, with my friends coming to see me and celebrate new life and the joy it brings.

Love and laughter,

XXX

A baby step forward

So my lovely bloglets,

Amazingly enough 6 weeks has flown by and on Thursday I was back at the hospital.  Be very proud of me, the nurse called me for my bloods who destroyed me last time and I asked if someone else could do it. Patient empowerment!!!!!  It's only taken ooooh, 6 and a half years to be able to do that!  And of course, the nurse didn't mind in the slightest and the amazing one did it.  One needle, one vein, all the blood needed, no almost passing out or throwing up or bruises.  So just in terms of that, it was a good day.

I saw the new consultant (David) again.  My now old consultant was there but I suppose I won't be seeing her again.  Do I mind this?  I don't think I do as David has done more for me in 6 weeks than she has in 6 years in some ways, but then I also feel bad that I haven't spoken to her about anything.  I know that they will have done in meetings, so I know she will be aware, or at least I assume this.  I feel in a way like I've gone behind her back.  Who knows, maybe its great for her as it's one less patient to see in the clinic....  And I think I'm a bit pissed off that she didn't make these decisions and choices for me when she clearly could have done and didn't.  Part of me wants to know why she didn't. Maybe I will ask this when I'm back in 4 weeks.

So I'm off treatment for 4 weeks to see if there is any improvement with my tiredness.  So far, I'm not sure. I've had a busy few days and not enough sleep, so I'm trying not to over analyse everything.... Not always that easy to take a step back and let it be.  But in some ways I have been doing that from the start.  A slight barrier has always been there, to protect.  I'm hopeful but wary.  I also had the lowest Leukaemic rate ever so that is also something to be very positive and excited about.  It had dropped from 0.016% to 0.009%. It's funny, I'm writing this but not feeling excited or involved.  It was also flagged that the tiredness might be due to depression.  It wouldn't surprise me if part of it is.  Who wouldn't be slightly depressed going through what I have?!  I'm feeling tired today, but it's the first morning I've had to relax since the hospital, so it's not surprising. I am also slightly concerned that 4 weeks won't be long enough to see a difference as it took me about 6 weeks to stop feeling side effects from the last drugs, but apparently the drugs don't build up in the body as they have a half life of 3 hours....

Last Tuesday I went to the leaving party of the CEO of TCT and spoke to someone who was a doctor and knew my Edinburgh consultant and spoke to me about how wonderful she was..... I now, slightly regret not voicing how I felt about that, and it's brought up a fair amount of anger.  But then, what's the point?  He is retired, she has retired, it's in the past.

So hope.  There is lots of hope, I think that I am finally being treated as me and being listened to which is amazing. It's the first time it's happened and I think that that is the biggest thing that I am processing.

Until next time,
Lots of love, laughter, and smiles.
XXX

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