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