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

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