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

Stuck on the can't instead of the can.

Well my bloglets.

I don't know where I am going with this.  It's 10 to 11 and I should be asleep.  I've got an exam in two days that I definitely don't know enough for, and then two essays to research and write and hand in by 10am on the 20th alongside patient research, being back in uni for 1 and a half days a week and trying to have a bit of a social life and time for me.  The essays are two weeks late due to my extension.  I am forever playing catch up with my uni work.

I'm not sleeping well at the moment.  It is taking between one and two hours to go to sleep, then generally I'm fine, but this morning woke up with a start at 7.30, which would have been ok, if I didn't need so much sleep. And I do.

Over Christmas, whilst it was amazing to be at home with Milo and Claudia and her boyfriend Rob, the whole family together, I didn't sleep well.  The stress and worry of an essay I was doing then and then not having enough time to do the next two and revise.  And the pain returned in my legs.  I feel very unemotional and unattached whilst writing this which surprises me because this is not how I feel.  There were a lot of tears over Christmas being so fucking fed up of being tired.  And getting angry with adverts for doing a 'dry' January. Because not drinking for four weeks is so fucking difficult.  I also feel that I am not acknowledged for everything that I have given up and sacrificed.  I'm just the one who doesn't drink and it's no big deal.  Maybe now it's not, but when I stopped 5 and a half years ago it was.  And I didn't announce it to everyone or ask for money or not go out because I would be surrounded by booze.  I just did it.  As with all the other changes I have made.  My 20s have been stolen from me.  And maybe my 30s as well.  It is yet to be seen.

One cousin has just had a baby and another is pregnant with their second and I ache to have a baby.  But will I be able to?  When will I be able to?  I know that my treatment by no means makes me the only person to question this.  My life is so controlled by things out of my hands. As is everyone's life to an extent.  I know.  I just.....I don't really know what to say or how to say it.

I have spent the majority of today in a fucking awful mood.  I'm so fucking tired.  My face aches and my eyes burn and I hope to god I pass my exam on Wednesday.  More often than not a little voice creeps into my head saying it's not worth it.  The stress and the exhaustion that this degree causes cannot be good for me.  Can I really get to July?

And then on the bus on the way home as the fucking Victoria line was closed between Warren Street and Brixton, my darling Daddy sent me an email entitled -'This is you Baba!  XXX' with this picture.

 Maybe I need to give myself a bit more credit and recognition for what I have done and what I can do, than

what I can't. I don't think I am amazing or strong or brave or a fighter or any of those other words associated with a cancer diagnosis because it didn't kill me.  I am just trying to deal and cope with this the best and only way I know.  By being me. It's just seems that at the moment, the exhaustion and the can't out weighs the can.

With love and a hint of laughter,

Me, XXX

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