Have You Heard of the Teenage Cancer Trust?

Well my bloglets,

In 2008, I can't remember when exactly, I was asked by a girl I had met in Scotland after my diagnosis through to Clic Sargent, if I would go with her to a weekend she was speaking at. This weekend was Find Your Sense of Tumour and I discovered the Teenage Cancer Trust. A charity that was over 10 years old at that point but who I had, and none of my friends had, ever heard of. I also discovered the Lost Tribe, teenagers and young adults (TYA) who are diagnosed between 16 and 24. The cancer kids. This is my terminology but phrases those of you who read my blog or watch my videos - http://jimmyteens.tv/films-by/katie-ruane/ will be familiar with them.

I was lucky enough at FYSOT 2008 to talk to the then CEO who is now in America setting up Teen Cancer our American sibling so to speak, so TYAs get the right care over there. And Simon gave me his business card. I moved to London in the January of 2009 ad me being me, one of the first things I did was to email him and our romance began. Not with me and Simon, with me and TCT.

I could whinge, again, about the shit care I had in Scotland and its emerging that my care at my current clinic hasn't necessarily been in my best interest in terms of looking after me emotionally and dealing with side effects, but this made me valuable to TCT. I can't tell you how many events I have spoken at raising awareness of what it's like NOT to be treated on a TCT ward. And, even though, far too old, I am still able to do so with a trip to Westminster on the cards in June.

I can't tell you how different it would have been if I had been on a TCT ward and I suppose that's what has been happening with Stephen, especially since his brave, dignified and heart felt goodbye on Facebook last Tuesday. Because of this the media awareness for TCT has been phenomenal. Not only will the money raised be able to build a new unit if that is what is needed, the publicity is priceless.

This is going to sound very strange. And I'm sure that those who knew about the charity before me and were treated on the first ward possibly feel this way about me. I don't know. Still being on treatment makes me have a slightly different view to most my age. I feel, and I don't quite know how to say this. Upset I haven't been able to do this myself? No that's not right. Jealous? A bit. Fucking mental I know. I am so connected to TCT it means so much to me and now everyone has heard of it which is obviously amazing. Awareness of TYA cancer is paramount. I now feel like I have to share and my secret is now public. I suppose I feel a bit like my amazing piece of jewellery is now everyone else's. I don't think this is making sense. I don't know.....

I feel that everyone knows about Stephen and what about the rest of us? For those who are 'normal' who haven't done anything like he has. Milo, my brother, is running the Great Wall of China  marathon for me and TCT in May and wants to raise £10.000. That's a phenomenal thing, but now seems to pale into insignificance a bit. I feel I can't ask for sponsorship for him because of Stephen and people donating money for him. I feel that by talking about Milo and me, I won't die, well not from cancer, is somehow a bad thing. It's all very confused in my head.

I do ask though, as a cancer kid (well....nearly 30) to think of those of us who are 'normal'. Just getting through each day the best we can. Not raising millions or being in the national press. Not being at ease with a terminal diagnosis but still struggling. Well that's me and my interpretation. I have 7 more days of my current chemo, two weeks off and then the next lot. For how long? I don't know.

If you can. Let's get Milo his £10,000 https://www.justgiving.com/Milo-Ruane1/

From an as ever-exhausted me,
love, laughter and hope,
XxX

Numb and Your Help Needed

Well my lovely bloglets,

I had a vague idea about what I was going to blog about today.  Last week I had both an amazing and an incredibly frustrating check- up.  My Leukaemic rate has dropped from 0.014% to 0.005% which is obviously utterly amazing.  It takes me a massive step closed to coming off the drugs.  0.000% is now in sight.

Drugs.  Well.  I will be starting new ones soon.  But not the ones my new consultant wanted me to get because of bureaucratic bullshit basically.  The ones I will be starting are called Nilotinib and the fucker about them is that I have to fast for 2 hours before and an hour after taking them twice a day.  Not idea for a massive foodie like me who does snack to keep my energy levels up.  However.  It may be that I’m not tired with them so don’t need the snack to pick me up and boost my energy levels to get me through the afternoon.  So it might not be as bad as I think.  Also, apparently they are appetite suppressants and my current ones are stimulants, so every silver lining right?

I was going to talk about how my old consultant saw me and didn’t let me see my new one and how furious I was and that she had no idea what was going on with me and didn’t say about taking a break between drugs etc etc etc So the next day whilst getting more and more fucked off I remembered I have my clinical nurse specialists number, so rang her!  She spoke to my old consultant who said a break of two days would be enough and I went very calming mental and said the my new consultant had okayed 2 weeks because of how long it took me to get over the effects last year when I had a break.  My old consultant was oblivious to all of this because I haven’t seen her in a year and she doesn’t treat me as me.  So I told my CNS that I was extremely unhappy with this and much preferred my new consultants approach.  The CNS said I could take a two week break but to let her know that I was doing it, and I agreed.  10 minutes later my new consultant PHONED ME!!!!  And we spoke for about half an hour and got it all sorted.  Amazing.  I love her.  We agreed how to move forward together rather being treated like a child and a ‘there there pat your head’ type of way that I feel my old consultant has.  Anyways.  It’s sorted, and I only have 11 more days left of my current chemo.  I really hope the next lot are ok.  Oh and also, my new consultant said to come in a week after starting the new drugs because I’m so responsive and sensitive to them.  My old consultant said to come back in 6 weeks….

I am today feeling this is all a bit irrelevant and I feel very numb and tearful.  A wonderful boy, he’s only 19, I was lucky enough to hear speaking and meet at last year’s Find Your Sense of Tumour is dying.  He has been terminal for a while due to late misdiagnosis because of being a teenager with cancer.  You have no idea how often this story is told.  I am so lucky to have been diagnosed in a day.  I saw yesterday on Facebook that he has said goodbye and thank you and this is it.  To have that courage and dignity at 19 is unbelievable.   I don’t really have words to be honest.  He has inspired so many and whilst he is on his deathbed his wish to raise a million for the Teenage Cancer Trust is becoming a reality.  I hope he is able to stay with us to see the million mark on his fundraising page.  I feel, I don’t know. I’m sitting here with tears streaming down my face.  I can’t… there are no words.  Upset, guilt, hope, loss.  None of these seem to be able to explain it.  Stephen dying, my living. Why?

Milo, my little brother, is running the Great Wall of China Marathon in May for me and for the Teenage Cancer Trust.  I have been through shit which may have been prevented had I had access to a TCT ward.  I didn’t and so my story is how it is.  Milo wants to raise £10,000.  So let’s get that £10,000 to help prevent late diagnosis in another teenager/young adult so they live the life they deserve.  So the next TYA gets the support they should, consultants who listen, so they are not alone and isolated in pain with no one hearing.  So they get the correct fertility advice.  So they smile and have fun.  Cancer can be pretty fucking shit.  But the Teenage Cancer Trust makes is bearable.  www.justgiving.com/Milo-Ruane1/

With hope,

XXX

8 Days in Colchester Hospital

Well my lovely Bloglets,

In the past 7 and a bit years I have only been in hospital as the patient, but not over the last 10 days.  I came home for a few days of chill out before living in the library for my ‘Easter Holiday’ because of dissertation and an essay due the first Monday back.  As always, exhausted, and needed this time to sleep and re-charge so the rest of my ‘holiday’ was productive.  I arrived home on the Monday via the wake of a family member that I had never met which was rather strange to say the least.

Tuesday morning I got up and as expected the rentals were not there – Kev aka Daddy, had a routine op booked at Colchester hospital to remove a cyst at the back of the throat and to have part of his uvula removed as it was elongated and he has sleep apnoea.  My Ma aka Mummy was in London for appointments and was going to pick him up on her way home. I was pottering and making tea when the phone rang at about 11, a man asked if I was my Ma - it was the surgeon who had operated on Kev.  He explained that due to swelling as the cyst was larger than expected and worries that the windpipe would be blocked, he had been intubated, and was on a ventilator in ICU.  Shock, is, I don’t quite think the word to explain how I felt.  This was also reminiscent of another phone call I had received over 7 years ago with my diagnosis, and I’m sure I was suddenly thrown back to that evening in the flat I lived in, in Edinburgh.

I’m not going to detail everything that happened over the following week sitting in both ICU and then on a normal ward whilst Kev recovered.  I’m not going to go into what it’s like trying to convince someone who has been awake on high alert for 3 days due to not sleeping for 2 nights once out of sedation with severe paranoia and hallucinations because of the sedation drugs and hearing everything whilst sedated and trauma, that they are ok.  There were some very funny moments but the majority were, well not concerning, but a bit fucking weird.  And that’s not my story to tell.  I think the thing that was the hardest to get my head around was walking into ICU and seeing my Daddy lying in a bed with a tube down his throat and tape around his mouth holding it in place and a ventilator breathing for him that he was  medically healthy and fit. All the time  spent on ICU and a normal ward was due to swelling from the surgery – the body doing what it should do – alongside a bit of a throat and chest infection and the delerium. 

I’m not going to lie, I did nearly hit the floor the first time I walked into ICU and saw him lying there, but luckily, I know the signs from my millions of check-ups how I feel when my body is about to collapse.  Note to self, eat food before going to visit someone in ICU. 

I am currently sitting next to him on the sofa and he keeps on interrupting me with what he wants me to make him for supper and he was ‘back seat driving’ when I was cooking earlier.  I think he was slightly surprised that the banana bread/cake thing I made was actually good….wanker.

Anyways, I am eternally grateful for all my hospital shit and that I understand how they work and am used to sitting around for them for hours.  I am also eternally grateful for the medical knowledge I have learnt through my degree which enabled me to understand and explain to my parents, especially Kev during his delirium what was happening by a person he trusted.  And also, without my diagnosis I may not have met my wonderful friend Kate who is a nurse and was able to speak to my mother and explain things when some information was given to her that was worrying.  I would also like to say that I was blown away by the nursing staff at Colchester ICU - they were amazing.

I haven’t really written what I thought I was going to.  I have stress rash all over my hands which I think shows how truly stressful and worrying the last 10 days has been.  Shock as well.  All my shit being brought up.  The worry of seeing him lying there in the bed, of him being in that state, which is common after sedation where nothing was as it is, and the fear and the paranoia.  The shock and the trauma this has been for him and for Mummy.  My in-built ‘rescuer’ driver kicking in, in overdrive and needing to look after everyone often to the detriment of my own self.  I left for 24 hours to go back to London to get reading materials I needed and Kev was convinced that nurses had killed me.  That time away and the worry I felt was far worse than being with him in the hospital.  I quite like hospitals, I feel at home in them.  The only downside was the fucking awful coffee.  I am finally beginning to feel not so knackered and am also a week behind on my work.  But fuck it. As always I will get it done.  As long as I pass, my marks, to a degree are irrelevant.

Back to the hospital - being a family member was far more stressful and worrying than being a patient.  As a patient I know how I am, I know I am fine, I know I will be ok.  Seeing my Daddy in that bed and then so affected by the drugs was a heart wrenching thing to experience.  I knew it was only temporary but not knowing when it would be over… waiting.  Something I have been doing for many years, but when it was about someone else, it was so different.

I have a check up on Monday, a brief phone call with my consultant yesterday and the chemo change is not going to be straightforward, but more next week.

The last 10 days have been a bit surreal, I have no idea how is must feel for my father and how it does as things filter back into his memory as I help to piece the bits together.  I do know that I am so relieved I was at home when all this happened; I could not have stayed in London and not known and wondered.  And I now know, just a little bit, about how friends and family must have felt when I was diagnosed and in hospital for that first week.

He is home and healthy and that is all that matters.

I dedicate this to all the nurses out there who might one day read this, thank you.                           

With love,  laughter and hope,                                                                                                        

XXX

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