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