Still waiting

Well my lovely bloglets,

Yesterday was the hospital and in one way it was very positive and disappointing in the other.  Oh, and I haven't put on any weight which is always a relief.

I have lots to say but not sure how to get it out.  I'm also fucking knackered, and beginning to have an achy leg which I know is my body saying chill the fuck out and get some sleep.  I seem unable to sleep for the length of time I need to even when I don't have to get up the next day.  I don't know why my body is blocking the much needed sleep.  Maybe I'm stressing about Uni....no doubt I am even thought I have let go a lot.  I am also busy with lots of cancer stuff going on which is really exciting and I want to be doing it, I wouldn't if I didn't, it also takes up energy.  Last night I went to sleep I think around 10.45 and woke up at 6.45.  This was not the plan.  The plan was to sleep until 9 or 10.  Being woken up by a noisy rubbish lorry and the fucktard builders/prison employees who forget that it's a residential area doesn't help either.  I feel a slightly shitty letter may be written to the governor soon about this.... Yes they might get to work at 7am but that doesn't mean that I have to be involved with their early morning shouted conversations to each other.

So the hospital.  I had it in my head that yesterday was the last day of my current drugs, but this is not the case.  A new drug has been chosen and I don't have to fast between taking it and eating, thank fuck, that was not something I was looking forward to.  An hour is manageable, but two is a pain in the fucking arse.  The drugs that the application has been put in for, is like the lot I’m currently on and I take it once a day whenever I like. BUT an application is being made to see if I am allowed to change.  I don't understand this.  I am already on one form of pill chemo, surely if there is the money for this one, there is the money for the other one.  It's not like I will be on both at the same time.  The joys of bureaucratic bullshit.  And costing  a lot.  I am aware of this, and feel guilty for it.  I will be emailed in about a week with the result.  I am hoping it will be a yes and then I am told to stop treatment for three weeks before starting the next lot.  My next appointment is in 4 weeks’ time.  My consultant said that I will be taking a break as there is no point starting new drugs still affected by side effects of the current lot.  I am also going to start on the lowest dose and build up to see where my tolerance is, rather than at the highest dose and then reduce to cope with side effects.

At least I am being listened to.  It has taken a very long time for this to happen.  My consultant actually went through all the side effect’s I feel to ask how they are, I can't remember that happening before.  I may be misremembering of course, and I do have a certain amount (fuck loads) of animosity towards one of my old consultants if not two.....  Realising how unheard I have been makes me really fucking angry actually.  HOPEfully this will never be the case again.

So again, I'm waiting.  I was prepared for change, which I don't like, and it didn't happen.  It will happen, but apparently I need to be more patient.  I am fucking sick of being patient.  I have been very fucking patient.  

I understand why I can't come off the chemo now, even though it's all I want.  I understand it’s amazing that I am in a major molecular response and that I am very sensitive to the drugs.  Being very sensitive also has its downsides.  I do sometimes wonder what would have happened if I had had the bone marrow transplant 7 years ago....

I've been in a bit of a funny mood over the last few days, I think I'm just knackered.  I am however carrying on with the 100 Happy Days project on twitter and Facebook even if sometimes I want to say fuck it all, because there is so much to be happy about.  And today, Milo told me he wants to raise money for the Teenage Cancer Trust when he runs the Great Wall of China marathon in May, so people, get prepared to sponsor the shit out of him!  That charity....I can't put into words actually what it does and the impact it has.  The impact it has had on my life even though I wasn't on one of their wards has put me on the path I am on now.  Being given a business card at a weekend conference in 2008 has given me the voice that I have in the cancer world.  And for that, well, how can I actually explain what that means to me.  I can't. 

So I should probably go and get ready to go into Uni as I have a patient this afternoon.  Back in 4 weeks if not sooner depending on what’s going on.

With love, hope and happiness (because I am on the whole happy),

XXX

I'm on the right track

So my lovely bloglets,

I think this may be a bit rushed.  Lots to say – lots of good stuff.  Bit weird that.  Can’t remember the last time I only wrote about good stuff. Feels like it’s been a really long time.

However.  Happy it is.  Happy I am.

I am nearly 2 weeks into the 100 Happy Days challenge and I’m really enjoying it! I’m not entirely sure how my friends on facebook feel about it…but…fuck them!  It’s a very simple way to focus on the happy and to realise how many things you can be happy about in a day.  It’s quite difficult to limit it to just one photo, but worry not all your facebookers, I will restrain myself.  However, twitter lot…LUCKY YOU!

In the last week I have been actively sought out to get involved with cancer stuff.  This is absolutely amazing.  It seems like the word is getting out about me in the cancer world…. So I am joining, as a patient representative, a chemotherapy group to make sure that patients are basically getting the best treatment, care during and after etc etc etc  all the things you would think are a given…this is not always the case. And yesterday after a really good afternoon in uni at clinic, this week has been brilliant in terms of my patients.  Positive progression is being made with both, and something monumental happened with one of them.  They came into the room and took their coat off.  Something so little yet so fucking significant.  This was my 4^th session with them and after a slightly rocky start after I went somewhere I was completely unwelcome, without realising it, we have a nice therapeutic relationship and they are making progress.  I have also given some advice to one of my lovely twitter lot and they are doing it and I’m so proud.  It’s amazing the little things I do can have such an impact.  Gone off track a bit, sorry.  So back to last night, at the end of clinic I checked my phone and I have been sent an email.  The Royal London Hospital of Integrated Health wants me to be involved with some research, as part of the research team.  THIS IS FUCKING AMAZING!!!!! Not only to be specifically sought out and asked but research on complementary therapies.  It could open some incredible doors for me…..  It seems like the universe is telling me that I am doing the right thing, I am on the right path.

Feeling proud. As you know, the last few months have been a real struggle for me, but I’m getting there.  This next bit is not by any means to belittle or to gloat.  Another uni friend has decided to withdraw from clinic.  I can understand why they have.  I was at that point myself not very long ago and it’s an awful place to be.  You have to be so strong to make the decision that actually, it’s better for you if you leave.  It has made me reflect on myself and the last 6 months and in fact the last 3 and a half years.  I am still there.  I am still moving forward and I am so fucking proud of myself.  I go through a fair amount of shit but have overcome it.  I should be proud of me, it’s allowed, so I take this moment to acknowledge it.

It's also been confirmed, I have won a prize at uni for progression.  It’s been worth is and this week has shown me why.

I should go or I will be late meeting my friend for an early lunch before I head to uni. I want to end this with something I tweeted yesterday

 ‘At times cancer is fucking shit and I want my life back. Then things like this happen and I feel honoured and proud and it all makes sense'.

So with a fucking massive smile, and hope and love and happiness,

XXX

Happiness

Well my lovely bloglets,

As always I don't really know where I am going with this.  I know there are a few things I want to mention though.

Being happy - I am still feeling happy and like me
again, I can't explain what it's like to feel like this again.  I have had an insight into what depression is like though and it must be fucking awful.  To not know what to do to get out of the black hole you are sitting at the bottom of with the glimpse of sky at the top but having no idea how to climb up and get out.  Luckily, I have some tools learnt through my degree and from my mother that I can use with a degree of ease which I'm sure has helped.  But to be how I was without them, I do not know if I would have been able to climb up and be in the sun again.  Maybe the sun has helped as well.  It has made an appearance over the last week which has been wonderful.  Spring is on her way.  I can feel it.  I can hear it.  And I can see it.  I never thought that winter bothered me emotionally and mentally.  But maybe, as I get older, it has more of an impact.  My birthday and Christmas aren't quite the same exciting events they were as a child and now my cancerversary is added.  So maybe winter is more of a struggle now.  And this academic year is mental.  Maybe winter isn't the problem, but my degree.  It shall be over in July and I can now, begin to focus on beyond that and setting up my practice.  I am excited about it.  I am over stressing about deadlines.  I will get the work done, I will get a mark for it and I will move on. I have another deadline on Monday but I have been working rather slowly and will be using my extension.  It will however, be done by next Sunday evening, so it can be ticked off the list.  Then only 7 more to go.

Just over a week ago I was photographed for a project - http://the100project.net
The aim is to photograph 100 normal people who have had cancer and for the photos to be sponsored. Obviously I'm going to be very upset if my photo doesn't get a fucking massive amount of money..... This picture is one of the two pictures of me.
I had my photo taken on the day of my tattoo and being told about winning a academic prize - I'm still not convinced this is true.... However, the feedback I have had on twitter about my photo which of course I have tweeted a huge amount and made it my profile picture, has made me smile. A lot.

In many ways I am confident.  I can peer review and question consultants and nursing staff about how they treat Teenage/ Young Adults and tell a table full of highly qualified surgeons and consultants that patient care starts the minute the letter is received or the phone call (in my case) or the second you step foot in the clinic you have to go to.  I can tell someone doing research for the PhD thesis about the fucking awful care I had in Scotland from my consultant, as I tell you.  I can speak on the stage at the Royal Albert Hall in front of thousands of people and confess my love for Dave Grohl and then tell him.... I can speak at a conference and cry without shame because I do, and it's allowed.  But when it comes to my opinion about me....well that's a different story.  So to have people tell me I'm beautiful and gorgeous in response to the 100 project photograph is both wonderful and hard in a way because I do not truly believe it.  I know I'm not ugly but......

I have today, after seeing my sister use a hashtag on Facebook (for FUCKS SAKE, hastags are for TWITTER!!!  But anyway, not the point) #100happydays I asked her what is was and she told me to google it.  So I did.  And I am now doing it.  I am going to, for the next 100 days tweet a picture of something that has made me happy or smile that day.  I hope it won't be difficult to do...now...3 months ago it would have been a different story.  I am doing it, like my tattoo, as a reminder that I am happy and to enjoy and embrace it.  Happiness isn't always there and now that it is, I shall actively acknowledge it.  I will also do it for those that I know struggle with this, and for those who are slowly climbing out of the dark hole into the light.  And maybe, I will inspire someone else to take up the challenge.  Although, I don't see it as a challenge, I see it as a positive thing to do a happy reminder.

So I go, with hope and happiness, it is so wonderful to have these back with me,
XXX

A little bit of heartache and so much hope

Well my lovely bloglets, 

I have been carrying the first part of this post around with me for about a week and have decided to share.  Whilst it may come across as a bit maudlin I am in fact, happy, and I have been for about 10 days.  I don’t know what shift has happened, but it has.  I feel like me again, and I love it.  I have hated being miserable and under a black cloud for so long.  I am not meant to be miserable and low and tearful, I am meant to laugh and smile and enjoy living. And I am again.  With relief.

Sometimes I wonder if I have done something to upset the universe. Or if it's just not my time. Will it ever be my time?  I feel that sometimes I am being punished, but for what, I do not know.

Men. My track record is not great. Always the friend or the girl to fill the gap before someone better comes along. Always attracting someone unavailable for whatever reason. And we have time together and then it ends. Quickly. In my life I have not been officially single for 1 year. Not a continuous year but a year made up of a couple of months here and a couple of months there. I'm told by my parents and my friends that I am beautiful but sometimes it is hard to believe.

Recently someone has come into my life and from the second we met there was something there. I cannot explain what or why but it was. And I think they felt it too. Precious moments grabbed here and there, and then, as always, they go. It's too complicated to explain and I don't think I want to share. Once again, it was the wrong time and too much is in the way for anything more. Maybe we will see each other again. I don't know. As I said, the universe does not seem to be being very kind to me. It's hard. Carrying this around. Wondering. Should such fleeting times together result in feeling like this? Maybe we were happy in another life which is why I feel like this. Maybe we will be happy in a future life…but there is hope.

On Thursday before my tattoo I was in Uni and bumped into a lecturer of mine to say that she had been meaning to find me as I have a won a prize!  My instant reaction was to laugh and say that she had it wrong.  It is for improved progression between last year and this year I think.  To be honest I wasn’t really listening as I was freaking out about my impending appointment.  I have insisted that she double check as I’m really not convinced it is me….BUT…it was fucking nice to be told even if it is wrong. My academic life, a bit like my love life, has never really turned out right.  At school I never did as well in exams as expected.  I would get constantly good results in the classroom and then something would go wrong, so I left with the grades not quite predicted.  So to be told, as I have come out of a long dark tunnel, that I have achieved something that has been recognised by a board of lecturers was pretty fucking brilliant.  My dissertation extension has also been approved.  Thank fuck.  My consultant wrote a bloody brilliant letter. She is great.  I will, in 5 weeks, try new chemo.

Tomorrow (Monday) my student insurance kicks in and I will not only be able to treat/advice people without feeling that I shouldn’t but also be able to charge a token amount for my time.  This will help.  I am also going to be giving treatments to those who use a bereavement centre and for a charity who provide therapy to those in the community.  I feel that by doing this I am able to look past all the deadlines that are beginning to loom – 8 more assignments to go – and am beginning to feel like a therapist.  It is after all, what the last 4 years has been about.  I want to give back, I have received so much.  And I hope that I am able to help, to give some much needed relief.  I feel that I have a gift of touch and want to share it.

On Friday I had a busy day peer reviewing an incredible teenage cancer trust funded, teenage young adult unit at a hospital.  I had a look around, it was amazing.  The team were also incredible.  So focused.  I hope that this happens across the country so every TYA gets that dedication.  Friday also consisted of two surprises.  A valentine’s day card.  It made me smile, it’s still making me smile.  Completely unexpected.  Gives me hope, it shows that maybe he felt it too.  And a photograph, I can’t say anything for a couple of weeks, but it’s fucking amazing.  I’m so excited.  More will come and follow on from that, I’m not being cryptic on purpose; I hate it when people are cryptic.  I have promised that I will wait before sharing.

There is probably more to say, oh yes, tattoo!  So the picture is today – day 3 and I think it’s looking pretty good.  On the walk I was freaking out, but once I arrived a calm descended over me.  It was the right thing to do.  I will never regret it.  It’s bigger than I have anticipated but it’s beautiful.  I want this with me always.  When having it drawn on my finger to approve it before he started, all the men in the room were watching and asked me if I had any other tattoos.  When I said no, they all said how much it was going to hurt and that I was brave/a maniac etc.  I just smiled and reassured them that my pain tolerance is insane.  And you know what, it didn’t really hurt.  It was a bit burny/stingy and over the knuckle was a bit sore, but it was fine.  I was also using a breathing technique to help keep me calm and meant that I and my hand was completely relaxed so I didn’t move.  Everyone has asked me, where will the next one be?  I think, it will be coming diagnosis date and coming off chemo date – maybe.  I will wait to see if this happens.  I have hope.  So much hope.  And now I should go, off to have some time with my sister.

With smiles and laughter – they have been missing and hope, so much hope, always,

XXX

Happy....I think

So my lovely bloglets,

I’m actually feeling pretty happy today….shocker I know!  The past couple of weeks have been really tough and everyday has felt like a battle with a fair amount of tears, sometimes in private and sometimes when speaking to my tutors - especially when I received an email from my tutor saying that the welfare panel wanted medical evidence to allow my dissertation extension as I'm in remission…. I’m not going to lie I felt like going into Uni and punching the fuckers. My email back to my tutor might have been a little bit facetious and I told her to tell them to read my blog…. Luckily I have the support of all the staff and there has been the offer of various emails to be sent to the welfare panel explaining that remission yes but the impact of the chemotherapy is intense.  Bureaucratic arseholes.  So.  That was FUN!

I had my check up on Tuesday with my new consultant who is really lovely and of course, I cried.  She is writing a letter for me to take into Uni explaining the impact of my drugs and she said that I should be applauded for my degree….. It’s nice to know that even though some people aren’t in my corner, those that I come into contact with are.  On Monday I had two patients in clinic and I hadn’t done the work I was meant to for one of them.  I had that days session planned and researched, but nothing else.  My supervisor said to me that it was ok and that this happens in life.  When I’m in practice I won’t always be able to have more than that’s days session planned.  The fact that I was crying probably meant that she couldn't really bollock me either….

So, hospital.  I have a big decision to make.  My consultant has suggested that I try an alternative drug.  The arse is that I take it twice a day and it has to be an hour before or after food.  And I don’t know the side effects.  It could be that there aren’t any and I feel absolutely fine and I get my energy levels back…..or it could be worse.  As I had such a fucking hideous time on the first lot with excruciating pain I am hesitant to change.  Whilst, yes, the side effect of chronic fatigue is pretty fucking shit, I know it.  I know how to deal with it….just about.  I know the signs my body gives me when I’m burnt out and need to rest and withdraw within to conserve power and look after me.  The new drugs could be amazing with no side effects and I could get my life back….I’m just scared of the unknown. I’m back in 6 weeks so I have time to think and make a decision.  I am also going to be given a break from the chemo for a couple of weeks.  It's needed.  I am being listened to and it's amazing.  I wish in a way that my consultant had just said that she was going to change the drugs and then the decision was hers.  Sometimes I fucking hate being an adult.  On a plus note I have lost all the weight I put on at Christmas.  WOO HOO!!!!!  Even though a cheeky fucker asked me if I weighed 70 kgs.  Twat. 

This week is the last week before reading week and I can’t wait to be able to lie in…..

It’s funny the impact music has on me.  I might have downloaded some amazing cheese and it makes me feel good.  I need to use music more.  I also love singing.  It makes me happy.  I should do more of that.  I need to release the guilt and focus on me and happiness.  Yesterday I went to my tutors house to have some quality time with Boris her Basset Hound.  He is absolutely gorgeous.  Animals.  They are wonderful and they know when you need them.  I still miss Winnie and Frank so much when I go home.  Hopefully I can get a pet of my own soon, or maybe even a boyfriend.  Fucking hell.  That would be monumental!  Touch – I need it.  Whether a hug from a friend or a cuddle with a dog.  It restores me.  I saw my cousin for lunch before the hospital and gave her a massive hug hello.  It was needed. 

Tattoo.  It’s happening AND with parental approval.  Can’t believe it!  I’m going to the tattoo place on Tuesday to have a chat, and get it booked.  Then I shall forever be with hope and it shall forever be with me.  My lovely friend Peter has started chemo again this week….

Twitter – over the past couple of weeks it has been a space for me that I have needed.  A place where I can say what I need and the space is given.  And in the post I received a care package and a card with the following written – ‘Thanks for being strong.  It inspires us to remember the important things.’  I forget this and need to focus on this more.  I also through twitter won a competition!  This NEVER happens.  In fact I have won 2.  I won a free snickers – amazing – the nuts makes them healthy…..and a painting.  An artist I follow on twitter makes the most wonderful paintings and I won one!  This one. 

I come into contact with so many wonderful and lovely people on this weird social place that is impossible to explain but one I wouldn't be without.  And I have been meeting people from it – some very special people– and this makes me happy.  People have so much to give even if they can’t see it.  And you spend time with them and it feels like you have known them forever.  There is an ease, a bond, impossible to explain but yet I feel it.

I have more to say but this is getting rather long, another will follow soon; got a couple of cancertastic events next week which I will no doubt blog about so will save the rest for that one.

So with a smile on my face,

With so much love, laughter and hope,

XXX

Hope and a prayer needed

Well my bloglets,

Less than a week since I last wrote and I feel that I have come full circle.  On Monday after submitting two essays and having a wonderful cancerversary, I felt happy and light and relieved.  I didn't realise quite how tense, that's not the right word, but how much of an impact my cancerversary has.  This is not to say I will not celebrate and acknowledge it.  It is too much of a major day to have pass by without recognising it.  And maybe as time carries on, the reality of being able to replace it with a day that I celebrate as the day I came off treatment is fading as a reality, as a hope.  I don't know.  My check-up is in a couple of weeks.

I have allowed myself a few days off and to relax.  So today, I feel fucking exhausted, as I did yesterday.  I have been carrying myself forward with so much stress, adrenalin and caffeine, I feel utterly spent.  I need to do some work but it can wait.  A not good result today has upset me, but not as much as the fucking harsh feedback which I am going to flag with the University.  Just because the essay does not seem good to the marker does not mean no effort was put in.  And I am struggling at the moment.  I know I can't have extra marks but it would be nice if the fact that I am doing a fucking stupidly intense degree whilst on fucking chemotherapy would be acknowledged rather than told that the essay was obviously rushed.  I feel like telling the marker to write the essay with no guidance at all from the module staff, do other work alongside including treating patients and having chronic fatigue and see how fucking well they do.  Twat.  It's moments like this when I think fuck it.  I'll drop out.  Give a shit.  Why should I feel like this about myself?  It doesn't do me any good.

Yesterday I decided to come home for the weekend.  The realisation of exhaustion hit me and home was all I needed.  I have also found out a wonderful friend of mine is suddenly really quite ill – the latest scan shows the cancer has spread from a couple of tumours in his brain to all over.  Fucking cancer.  I'm not massively religious, more spiritual, but I am praying for him and ask that you will too.  I don't know if he reads this, or if his wife does, but the admiration I have for them cannot be put into words.  And another friends mother is awaiting surgery. Cancer is everywhere at the moment and it would be quite nice if it fucked off.  I am so lucky to be here but the guilt sometimes is overwhelming.  Guilt that I am ok when others aren't, guilt at the cost of my drugs, guilt that I whinge when I am fine.  This is not going to kill me.  The side effects yes, are a bit shit. Chemo plague is in full force at the moment.  But really.  What right do I have?

My throat is so tight at the moment, I will process this and let go - as I should of my marks.  I want a 2.1, but does it really matter? One of my lovely twitter lot writes about hope.  They have faced adversity but do it so gracefully.  In a much better way than I do…  Hope is needed at the moment.  Maybe I will get that tattoo I have talked about for 10 years, and it will say hope.  I carry it with me always, even if it sometimes gets hidden behind a cloud.

And so I go, focusing on hope.

XXX

7 years

Well my lovely bloglets,

Today is a bit of a strange day for me.  My 7th cancerversary.  Can't believe it. 7 years of treatment and over the last few months it has really been taking its toll.  My degree is insane and the work load is monumental.  I was talking about it on Thursday in a small group session I have once a month called Personal Development where we can bring issues/problems/things that have been playing on our minds from clinic and our interaction with patients or each other.  I spoke about burnout because that is where I am.  Burnout.  Dropping out sometimes is a very tempting thought, but I have not got this far to do that.  Deferring modules is not an option as we are, this year, the last of my course.  I never understood why final year students left this close to the end.  I now get it.

Whilst I was talking about this and the fact that today is 7 years, I got upset, which didn't bother me, I warned everyone that it would happen and it's fine, but I also experienced the most surreal feeling.  I got very hot and sweaty and felt that every cell in by body was vibrating and felt very shaky and jangly.  After this I experienced a calm and the realisation to allow myself to let go.  It must have been a massive emotional release that I have been needing to do for a while.

In December I saw my personal tutor and she said I never ask for help.  I have been thinking about this and it's true.  I feel that I must be strong and make sure that everyone knows I'm ok so they are ok.  I need to trust that everyone is ok and that I can talk about how I really feel without upsetting anyone or feeling that I am constantly whinging.  This space, where I can write helps me so much, but I need to talk.  To stop bottling it all up.

I feel a massive relief today, I have finished two essays and I have, I think, got a 6 week extension on my dissertation which means I can breathe a bit.  I can take this week off and look after me.  

I never thought I would still be on treatment now, and I don't quite know how to ....I don't know what I am trying to say.  Yesterday is was my friend Jacks birthday who died a few years ago.  He was so strong and positive and yet it wasn't enough.  I don't feel like an inspiration at the moment.  I feel fed up and sick of it all, but yet so grateful I am here.  Guilt.  It's a fucker.  

But I'm so happy I am here and able to so what I do.  I have such a wonderful time on so many levels and am surrounded by love which is why I celebrate today.  Today is about recognising all the good that has happened over the last 7 years which is huge.  The list would be so long, I'm not going to put it here.  I have met so many and done so much and as I said on Friday at a meeting at the Teenage Cancer Trust, I wouldn't change it.  I would not remove and edit out my cancer. I would change parts.  I would hope to be treatment free by now.  But the cancer diagnosis, it stays.  It would be nice if all the cancer cells buggered off by now.

Today is about all of you and a fucking massive thank you to you.  You who read this, who watch my video blogs, who say wonderful things to me, who keep me going, who smile and laugh with me, especially at my slightly dark tumour humour.  You, because it is you who keeps me going.  So with all the love in my heart, thank you. And especially to these four people - My Daddy , Mummy, Claudia and Milo.  My wonderful family who make me, me…

So wherever you are, take a minute and smile, because that is what I shall be doing,

With love and laughter,

XXX