Nigh Night Beauty, I Love You…

TO MY BEST FRIEND…

23^rd January…

I sit here whilst you snooze next to me, wrapped up cosy in your blanket. I am acutely aware of our time together dwindling and hold on to your every breathe. I know you are tired now and I want to do what’s right, I just hope you know how much I love you and how I will miss you day and night. You have been so much more than just a pet, you have been my sanity, my safe place and comfort. You have loved me unconditionally even when I have lived away, without you, you loved me when I came home like we were never apart. You are the consistent happiness, my smile a day, you make me giggle with your beautiful ways.

I’m just so scared over time that I will forget you, your snoring, your cuddles, your strops and sulks. I never want to forget the feeling I get when I come home and you are there so happy to see me, greeting me with sheer excitement, scuffling and falling on your arse on the wooden floor. I will miss your warmth, cuddles and demands for treats. You peeping at me over my laptop when I’m trying to get work done, putting your paw on my thigh and looking at me then looking at your treats, we have our communication down to a fine art.

24^th January…

I sit here with tears streaming down my face cos at 6pm this January 24^th 2018 I said goodbye, gave you your final treats and held you as you went to sleep. You fell asleep so peacefully in my lap and I thanked you for all the years of sheer joy and love you gave me. You soldiered on through so much pain and finally let me know that it had become too much. I did the final act of love and kindness in letting you go, I couldn’t let you suffer to save my pain and heartache. I was so lucky to have had you for so long, I hope you are at peace now and pain free and ill be back with you one day.

So say hello to all the dogs we had in our lives whilst you’re in doggy heaven, don’t fight with the other dogs you’re free now. And Ill always take comfort in having had your heart and given you some of mine.

My best friend, Beauty, I will always love you.

xxxx

Beauty

Beauty Posing

 

WOMAN ON A MISSION…no baggage, its all about me…and family! INTERACTIVE POST :D

Well here’s where I’m at now…

I had to leave my PhD before completion due to terrible health. It wasn’t a decision I took lightly but my mental health was being tested due to my body giving up on me. Since this I have been volunteering for Macmillan as a Service User Rep sitting on the steering group, psychology and mental health board and teenage and young adult small community. I also represent Greater Manchester Cancer through my role with Macmillan. I’ve really enjoyed this, I have been able to channel my negative energy into something productive.

One of the main projects I have been involved in was working with Bury CCG (Clinical Commissioning Group) to develop a none clinical support service to help people affected by cancer find support that clinicians often don’t sign post to as they are unaware of the support available. Its been a labour of love for 18 months, but with tenacity and hours and hours and hours (you get what I mean) of sitting in meeting after meeting we have designed an amazing service. 10 charities within the Bury locality have joined forces to tackle issues ranging from debt, benefit advice to psychological and emotion support and just a safe place to relax and meet others. Through the Bury Cancer Support Centre people affected by cancer with a Bury GP can call a central number. The call will involve a chat with highly experienced individuals who are skilled in identifying issues during this call. From there users will then be advised on the support available from the charities and are put in touch with them. This central phone line is meant to be as simple as possible in the way of users being directed to correc and meaningful support. It is self-referral and GP’s can refer you to them as well. ITS SO EXCITING!…AND today I received the promotional material and its great and ready to go live on the 3^rd January!!!!!!!!

 

It feels like such an achievement and I have gained so much from it, apart from being there to ensure the users are at the centre of the project, but I have had an active role in delivering training to the charities. I have been in such a privileged position and met some truly amazing individuals who genuinely believe in this service and have tirelessly worked together to reach completion. I am so humbled by the tenacity and empathy shown throughout the project and as a cancer survivor, I really wish I had a service like this from the start of my treatment. BUT I know it is there now and people affected by cancer will receive amazing support through this service.

My involvement as a service user rep (SUR) has helped me grow in so many ways, I am able to articulate the views of patients in a more positive way. I am now able to ask those with the power why ‘after 14 years I still have had no access or been sign posted to any psychological and emotional support. You can change this but shame on you for leaving this issue for 14 years’. As a result I was able to along with the backing of other SUR’s ensure that psychological and emotional is a priority in the 5 year forward cancer plan. I strongly represent and advocate Psychological and mental health support from the start of the cancer journey. I was asked to do a video to highlight the challenges of being a SUR…

 

Greater Manchester Cancer UI Newsletter – Issue 14

macmillan-user-involvement-annual-report-2016-2017

I have been empowered by being given the opportunity to present my experience to many audiences including Greater Manchester Cancer board, Macmillan training events, Adolescent and Young Adult Global Congress, medical students and in interviews. Its so liberating to be able to stand tall and represent those affected by cancer as I never had a voice when I was ill, but I do now and I WILL USE IT.

I’ve been thanked for being open and totally honest with stakeholders and asking the questions that are uncomfortable to be asked. I have several issues that are ongoing but being addressed gradually and that is the lack of teenage and young adult representation in the promotional material put out, exaplining what opportunity there is for users. I also push for more representation of BME groups, deaf and blind users, those from very deprived areas, drug and alcohol users, LGBT communities and those with other diseases as well as cancer. I am keen to ensure that Macmillan and GMC reach out to these communities in order to develop services to cater to everyone’s needs, no matter what community you belong to or what beliefs, limitation you may  have. IM A WOMAN ON A MISSION!!!!!! I have also had the opportunity to be on 2 interview panels to appoint users on boards and to employ someone for a paid role, it was amazing!

I was also given the opportunity to share my experience of having had osteo0sarcoma and what its like as a survivor. I really enjoyed being a part of this as it was a step closer to healing a bit more. Although I did nearly cry (which those who know me I NEVER cry).

 

(2)Living_with__and_beyond__primary_bone_cancer_2

SO as it stands now, I’m keeping busy volunteering in these roles and hopefully applying to do my teaching qualification. I am unable to do anything career wise at the moment tho cos I have a 1.5cm kidney stone, STUCK in my kidney! Its TOO BIG to travel and pass naturally so I will need complex surgery to remove it (I’m likely to be waiting over 1 year). Now those who know what its like having a kidney stone will know it’s as close to HELL as you can get. NO PAIN RELIEF WORKS! And I’m popping anti-sickness pills for fun cos the pain makes me nauseous. Not only that, I have an ongoing UTI as a result of the stone and its not shifting and has hospitalised me. SO with all of this happening, I can’t commit to anything ☹.

It’s not all bad tho, I’m loving being home with my family and I get to spend time with my incredible Brother now he’s at uni, we talk a lot about Geography (he’s doing a BScHons in it) PROUD SISTER!!!!! It’s nice being with my parents too and my lil stinky staffie Beauty (she’s 17yrs old now, and I think she’s coming to the end of her life now) but im giving her a life of luxury while she’s still with me ❤

My Brothers band URBAN THEORY are doing amazingly and had a massive gig at GORILLA in MANCHESTER. They have 2 songs on spotify:

We are 100% verified on Spotify! Follow us now to keep in tune of new music to come in 2018!

https://open.spotify.com/artist/0TpF4FbnUR7nIC2oZS66Ni…

AND some Pics and Videos of them…

 

 

 

                            My Brother Alexander on Vocals and Rhythm Guitar…

Below is the Crowd at Gorilla Gig…

 

THEY HAVE A MASSIVE HEADLINE GIG IN FEBRUARY DETAILS BELOW…I GUARANTEE YOU’LL HAVE SO MUCH FUN…

 

Anywho, I’m tired so Night Night 😀

XOXO

Collie

The Drama that has been my life up until May ’17…

And Breathe…

Well its been a very long time and so much has changed, my life is different now in so many ways.

I had a fab time in December presenting at the first Adolescent and Young Adult International Congress in Edinburgh it was one of my dreams come true. I met so many influential healthcare professionals and researchers who really inspired me and ignited the fire in me to progress on my PhD (I will do a post on the whole experience).

You see in August I had to take an interrupt of 6 months from my PhD due to ongoing health issues. This was a big and scary decision and I spent a lot of it feeling like I had lost my identity and didn’t know who I was. During this time I had numerous appointments with the pain clinic, neurologist, psychologist, GP and cardiologist.

PAIN CLINIC: I was informed that I had all over neuropathic pain along with muscle spasms and spinal issues. As a result I was asked to see the psychologist to assess whether the pain clinic would help me. I saw the Psychologist and spent 2 hours with him, to be informed that there would be very little they could do for my pain other than pharmaceutical intervention. I was also told I had many complex issues and needed to see a Psycho-Oncologist to work on PTSD, anxiety, depression, social isolation, self-esteem and help change my lifestyle.

NEUROLOGIST: I was referred for a brain scan as I have been experiencing worsening cognitive difficulties (memory, word loss, planning, slow at many tasks). The brain rested was ok structurally however I will be pushing for an fMRI as this is what will show where the brain is struggling during cognitive tasks. I am also still 8 months later waiting to see a Neuropsychologist to have further cognitive assessment. Whilst I wait im still struggling and am resorting to making endless reminders, but forgetting the reminders!

CARDIOLOGIST: I have been collapsing and getting very dizzy and constantly breathless doing the smallest thing (folding clothes) as well as getting Cyanotic and changes in BP. Structurally my heart is fine, however I need further exploration of my arteries and lungs. My heart rate has been rising again despite medication.

GP: I am severely deficient in vitamin D so am taking daily doses. I also have been diagnosed with thoracic syndrome, where nerves and muscles in my spine fire up and spasm causing unbearable pain in my hands.

I also suffer really badly with my digestive track, with most food irritating my tummy, I also have IBS.

So that’s the health so far!

SO now I’m back home at my parents, 29 in May and still at home! But in all honesty I feel so much better being home.

My family (under my orders 😝) spent the week moving me out after the house was left empty (leaving the property empty, despite it being someone else’s responsibility to look after it) and a pipe had burst flooding the kitchen to the point the ceiling had fallen through. The only reason I knew this happened was when I went to collect something from the house and I walked into that. I was left to deal with it cos it couldn’t be left, my brother had a gig that night and I really wanted to make it. He finally showed up after me impressing the urgency and enormity of the issue. My Dad had left work early to come help as well as my mum (who had just finished dropping of the band gear). The next door neighbour even tried to help (the stop tap was broke) which was so embarrassing as it wasn’t even my house nor was it my responsibility, yet I had to get people to come help me. I was mentally exhausted but didn’t broadcast how scared and anxious I was, someone had to deal with it! Someone had to MAN up as per and I did…very well I might add!

As for moving my Dad and brother were left with packing up and transporting my stuff and left to deal with the rubbish etc which was from both of us. I finally found the strength to say NO! My Mum, Dad and Brother are tired and in a lot of pain, they all have health issues. My Brother also had revision to do for his A-levels and my parents work full time. Its been so emotionally difficult as I’ve tried not to be angry, but after thinking, I can see the job of moving and sorting the house has all been left to my family despite it being both our rubbish etc. I will be glad to see the back of it all! My family have gone above and beyond for us for the last 3 years with no reciprocation, its my time to say ‘I can’t cope, I can’t do it!’ Cos in all honesty I’m so ill from it all, but  I’ve not gone on about it and complained (like he has!). AND the plot of why things went wrong thickened and the truth about him came out, lets say I am NOT surprised in the slightest, but I’m truly sickened.

I’ve vented so much in this post, but I’ve had to get it all out. I need to stop being a push over and trying to help everyone cos most of the time people take the piss out of me and see me as a walk over. No more! As far as I’m concerned now my Family are the most important people as well as a few friends (you know who you are).

Now I have 3 months more off University due to the stress of the whole relationship break down and moving house has made my health shite. I’ve been ill for 2 weeks with a bug and obviously fallen behind as a result.

Sorry for such a negative post but I needed to say it and share with those who also have late effects from cancer the difficulties normal life experiences take its toll on us. It can be tough at times, there’s times I’ve not wanted to wake up, very dark times and a lot of pain and flare up as well as new conditions. BUT there’s always a light (that never goes out 😝), we are a strong group of people, battling every single day to try and work through our endless conditions, and we have each other’s backs despite not seeing each other that often, we pull together and that’s special and very precious to me. I also have some great friends who haven’t had cancer who are their for me (Emma, Joe), who give me a sense of normality when I’m with them 😊

I’m off to try and sleep now (00:44) and I’m wide awake as per.

Night Night x

P.S. I am NOT sorry for my honesty in this post, if you don’t like it, then you shouldn’t have given me material to write about…

XOXO Collie!

Frantic February

Hey There!

This month’s proving to be ok as far as my health and motivation goes. Now don’t get me wrong, I’m still in crippling pain and battling my fatigue, but I’ve not felt so bad about it. We spent a week at my Grandparents on the Welsh Isle of Anglesey. We have our own little cottage there, it’s a self-contained building with separate bathroom. We have a fold away couch, dining table and kitchenette. We are immensely lucky; my grandparents have worked all their lives to have what they have now. Surrounding us in our cottage is farm land, free-range chickens and cockerel, we can see RAF Valley and get to see all kinds of amazing jet fighters and helicopters. We’ve even seen RAF training where they jump out of helicopters etc. there is a Forest and through them at the other side is a beach. It is pure BLISS with the most amazing night skies, stars as far as the eye can see. I do feel at peace and rested them.

Our Shed (affectionately named so as the bathroom door still has penciled on it ‘shed’) to the left of the pic.

Cluck Out…

the motherCLUCKER is smart eyeing you…

oh for COCKS sake false alarm again!

I got to meet my younger cousins lil girl for the first time, she’s about 6 months ish and is so very cute and beautiful. She even liked me and smiled most of the time.

Hows that for a garage?

I’ve done more volunteering which has been very positive, I get to help make changes to cancer services through sharing my experiences. I’m involved in a few groups and next week I get to shadow a board meeting on one of the groups I’d like to be involved in. I also get to attend a conference next week on shaping AYA cancer care. I feel like I actually belong again after the hurt of losing some of the benefits which came with my research. I’ve felt undervalued, through no one’s fault but my own. Illness had made things very difficult and functioning with a new condition (my heart issues) was a whole new learning curb for me. However, I am plodding on at the moment and I need to monopolise on this because usually I’ll be on a plateau for a period of time, then my health will take another drop. Each time this happens my health never returns, so I have to learn how to make my new health state work for me. 13 years of declining health and I’m not even 30 yet! Onwards and upwards though for now.

We had to emergency dog sit! My Dad decided he wanted to go with my Mum and brother to Wales so i ended up looking after Beauty which is never a bad thing. I got lots of loves from her, I miss not having her living with me but she’s happy at my parents, it’s easier now she’s old. She’s strong as anything still  just like me. She made me laugh and smile a lot, at one point I was doing my work when I felt tugging on the blanket I had over me. I caught the lil so and so trying to take the blanket off me. Eventually we compromised and shared the blanket HAHA! She is so much more than a pet, she is my therapy dog. She helps with my anxiety and feeling down, she can sense when I feel naff and always comes over to me with kisses and cuddles and general cuteness. I’ll never have another like her, she helped me heal from having had cancer through my teens.

THIEF! You’ve been made lil Miss

Ok Ill compromise…

Now she’s happy I think 😛

Now she’s tired from all the hard work…stealing blankets!

FFS! HAHA The cute face melts me every time

Oh no its snooze time…

Part of my world in one CUTE lil photo…this is why she’s more than a pet ❤

My big Iccle brother got home from Rome with College alive and in one piece thankfully which causes me unbelievable anxiety. I get terrible dread when he goes away or on nights out cos the world is a scary and dangerous place at times and he is the most precious person in my life. He is growing up to be an amazing young man and now has his FA Coaching badge, which is AWSOME.

…

My aim now, apart from getting my uni work done is to sort out this post-chemotherapy cognitive impairment! I wish I had the money to go private as the NHS don’t know how to refer me to a neuropsychologist which is annoying me beyond belief. My word loss is getting really bad, as well as literally forgetting what I’m doing during a task and losing the track of the conversation. It is now thought that parts of our brains aren’t even responding when they should, especially in the pre-frontal cortex. So I am a MIFFED off teenage cancer survivor ON A MISSION TO SAVE MY MIND!

Toodle pip for now

C x

Frustrating Enigma a not so Beautiful Mind

Hmph!

Had my appointment today about me losing my mind, and it went SHITE! The GP is on her own planet and asked if I knew anyone who can help with my post chemotherapy cognitive impairment. Why the F would I know?!?!?! 😥 I’m so exhausted with being me at times, begging for help in stopping this brain damage and it seems their is none other than head off brick wall. So tonight now I have to research myself to find help and do what the NHS should be, only I won’t get paid.

I have had a bit of good news, a conference I want to attend is out of my price range but perfect for me as a student and service user. I’ve been scrambling around with not much luck. It turns out a source of funding is looking likely for me now! I feel lucky and as always privileged.

I have alotta drive, determination and tenacity and I want to help make cancer and survivorship as easy and trouble free as possible. So when people are kind and see the best in me, they will get all I have to give!

On that note, I’m going to enjoy my fellas company and have a bit of a whinge.

Toddle Pip x

Not so January Blues

Hi Again,

Well alot of things have happened since I last posted, some exciting and some scary but needed.

I told you in the October post that I am working with Manchester Cancer and MacMillan, well since then I completed my induction training and am now down to attend several meetings over the next few weeks. I am very excited because I am in such a PRIVILEGED position being able to research and work towards my PhD in psycho-oncology, resulting in me earning a Dr title, but I am able to pro-actively work to assist in changing cancer services in the North West. My PhD work is coming along now, im getting to grips with what I need to be writing, I have had days where Ive been ill, but I have managed to get a bit done on them days so its slowly but surely on its way. As for my voluntary role I am able to take part in as littel or as much as I can which is perfect. The people I work with are amazing, the group ethos is that of change through experience and education, having service users inform how health care needs changing is the most valuable part. No one but the users know what its like being at the end of something that doesnt work, or equally that does and so we ask for more of it. I finally feel VALUED as my RAMBLINGS seem to have a place now, outside of driving my Mum mad with them

Our first Christmas tree 2015! With many more to come ❤

50! My first love, my Dad has turned 50 this January, I cant believe it. Ive seen my parents turn 30 and 40 now its 50! The years just disappear, I try and get to see them when I can (more than once a week, poor sods thought they were rid of me).

My Dad and Baby Brother x

My Mummy and Daddy ❤ 

Oh and I went to the Dr for my dementia test (they used a test used to assess dementia to get a crude reading of my neurocognitive function), this is relating to PCCI (Post Chemotherapy Cognitive Impairment). She asked 5 Qs then stopped and said its clear I have great difficulties! I will be nothing without my brain as my body is packing in on itself gradually. Please spare me a thought as I will be seeing the Dr tomorrow to see how we move forward, fingers crossed it shouldnt take too long!

Anyway im going to finish with some piccies of the band from Friday night.

Thanks for reading, and Good Night! x

GETTING THE BETTER OF ME!

Hi everyone,

I’ve been thinking a lot about the staff  training day I was asked to attend for a child cancer charity. I was asked to go and tell my story as well as discuss the issues I face now in survivorship. Yep the dreaded SURVIVING NOT THRIVING! It was a very productive day and I met many influential people. I get the feeling they think I’m as mad as a box of frogs (they wouldn’t be wrong) BUT when it comes to cancer in 0-25 year olds, I may look eccentric but don’t judge a book…I am very VERY serious and determined when it comes to changing things for these individuals. I was at table with people working with designing chemotherapy treatments as well as non toxic therapies, people from the NHS, people with lots of money and fundraisers. Everyone at that table has a part to play and I had the chance to spell it out to them as well as learning ALOT from them. Suffice to say they all were very surprised with my confidence, knowledge, empathy and above all my NO SHIT mentality. I can hold my own at a table of high flying consultants quiet happily, I am in the privileged position of being a voice for those who need one, and to be heard (eventually, again, they won’t be banking on my tenacity, I’m like a dog with a bone). Being heard by those who can change this. I left feeling very happy (even after getting a parking ticket), especially as I’ve been emailed with thanks off everyone. I know who to go to now when things need doing, a full team with a shared DESIRE, all from different places with ONE GOAL!…CURING CANCER. BUT while we wait until then, make the experience as comfortable, and at a lesser cost as it has been to so many before us.

NOW here comes the overthinking…this SURVIVE NOT THRIVE mentality is going to be tackled by ME! I will make it sweat and beat it into submission! For years I’ve survived, yea great I’m here ‘at least’ as I’m so often reminded, but I’m here at an awful cost as are so many others. We were given treatments which were largely still in their infancy, so that meant any nasty lingering bad effects aren’t identified until years after treatment and cohorts of individuals are guinea pigs without their knowledge. NOW here’s the kicker, we know now how toxic chemotherapy is and have done for years, but studies are only just being carried out on the effects. As a result the THRIVING aspect will probably NOT be an option for me and many cohorts of survivors before me as the damage done by late effects is irreversible. This would be enough to make anyone angry, bitter and twisted, it makes me feel like that. HOWEVER I don’t want people going through and surviving cancer feeling these dark horrible feelings I feel on top of experiencing the pain I do. I vow to take all my negativity as hard as it will be at times, and sort this mess out. Us teenage and young adult cancer survivors are feisty and tenacious, and we will act and ARE acting 🙂

I found a great quote earlier but I can’t upload the picture so I will just type it:

“Caner lost the battle against you,

Because it originally planned to make you weaker

But, inadvertently made you stronger

Now that you have survived

Thank the disease for helping you

Discover the fighter within”

It is very true! Survivors fight every day, the late effects and maiming and organ/limb snatching left behind by cancers treatment. BUT like shit will I give up now, nor will any other survivors. That strength cancer showed us we have within us is why we are here today, strong. We have our moments; times we are too fatigued to lift our heads due to a sleepless night of phantom limb pain, or neuropathic pain, pressure pain. The times that the pain we feel is unbearable and we lose ourselves in a dark place, a dark place only others who have suffered knows. The times we here a beep and it reminds us of hospital drips taking us right back to a moment when you were being treated the PTSD Monster, lurking in our minds, ready to surface at one smell, one feeling, one moment. The depression and anxiety constantly having to justify your worth to society, to the government, those who hold the purse strings to funds that will support you whist you carve out a career. Feeling as though you’re dying, suffocating, winded, drowning in fear that has no cause and is out of nowhere. DESPITE ALL OF THIS WE ARE HERE, ALIVE, FIGHTING AND SHOWING CANCER OUR ARSES AS WE SPRINT AWAY FROM ITS GRIP!

Cancer tears lives apart in a way no other thing in life could, families fall apart at the seams, younger siblings now grown up reverting back to when they had no mummy and daddy as they had to work and care for their sick sibling. Battling their own demons that we survivors feel in some part are to blame, wanting desperately to make all their memories of you being ill disappear.

BUT

Cancer also brings family together, creates a bond that can’t ever be broken, stronger than ever before. A love for each other we never realised we had, and a loyalty that will never weaken. Cancer doesn’t just show the sufferer how strong they are, it proves the strength of the love and bond within that family unit.

Wow my mind really does get the better of me at times, I hope someone enjoys reading this.

For now Night night 🙂

Here’s a picture of the snuggle buddy I have for this evening, she is adorable but very very naughty 😛

 

BURNING THE MIDNIGHT CANDLE

Hi Guys,

Its been 4 months nearly! Jeez where does the time go?

Im hoping you’re all well and hangin in their with me HAHA!

So some changes have happened since then the most important one is I AM STILL A PhD RESEARCHER! YAY! Finally my late effects have been acknowledged and understood! It was a happy day for me finding this out, it is another step forward for other cancer survivors. Late effects of treatment is a certainty at some point in your life as a survivor. BUT! why should my fight, my war with cancer disadvantage me in the future. It is wrong and shouldnt happen in any educational establishment or workplace. I WON! And now my new BATTLE begins, I will push through the pain and fatigue as much as I can. I will complete this research as I have NEVER given up, EVER. And now is not the time to change that. I have the best supervisor I could have hoped to work with. He understands as much as he can, but when he doesnt he asks, he wants to learn what cancer does to survivors and I have a few of the answers. I feel truly priveliged to work with him. I also feel amazing that the institution saw that I am trying and I have to do things a different way. I am slow, my brain is hard to work with 😛 but I get their.

My Office! Its great.

My Brothers band is going from strength to strength and has written nearly enough songs for an album. Theyre getting gigs in amazing venues and even headlined earlier this month! They are working very hard and it is paying off majorly. I am the worlds most proudest sister. I love seeing him on stage, its the best feeling seeing him their so talented, I could go on and on…

My Brother is the singer and rhythm guitarist ❤ he is my world, he helped me fight cancer and continues to help me now, Im lucky to have him and treasure him dearly.

Oh not to mention XANDER IS NOW 17!!!!! F*&K! Where has time gone. He is still the chubby lil red head I knew as a baby. I miss getting cuddles from him. Its only when the cuddles are gone that you realise you should treasure the ones youve had. He is learning to drive and doing very well (my grandad has been helping when Xander goes to Wales).He passed all his GCSE’s even getting an A for PE, (jammy lil shite, beating me haha). He is also at college now studying Religion, Geography and P.E.. He loves it and is having very intelligent conversations with me about philosophy, he seems very happy at the moment and thats the best feeling, no worrying. He is growing to be a fine young man when he’s not being a gob shite 😀

I managed to be a big grown up on Tuesday night. I was invited to the Christie (where I was treated for cancer) to talk about what needs teenage and young adults who have/had cancer have. I was suffering terrible anxiety and PTSD whilst getting ready all sorts of memories came back. I was ridiculously difficult to leave the house, BUT I did, once again I win haha. when I got their I saw familiar faces it was great. I bumped into the male nurse Dave whose hand I nealry broke when having stitches RIPPED out. He was so happy to see me and everyone their said how proud they were that I was doing well ❤ ! Anyway once we started it was amazing to be heard and I am going to apply to be a board member for the charity involved. I am excited to be involved in this. About 11 years ago we (other patients past and present) came up with a group called the Christie Crew! A group who will tackle the issues we faced. One of the major things the group did was addresss the importance of being treated on a TYA unit instead of an adult unit. This was important as the needs and environment are very different from adults and children. In the woring environment psychologically can have such a negative impact when being treated. Any long story short, we produced and acted in a film to highlight this. Subsequently over 75 copies (probably more now) have been distributed nationally and internationally to be used in training and education. This in turn got the ball rolling on tackling this issue. Now over 96% of TYA with cancer are treated on a TYA unit! What a privelige.

https://jtvcancersupport.com/embed/65520374be

The link to the video the Christie Crew produced, Im the tea lady, and the girl with the Betty Boop hair 😛

I am also invited to training of staff and trustees of the charity I work for. They want me to talk about how the charity impacts on children and young people with cancer, drawing on my own experiences. I am probably thee luckiest survivor around, I have the chace to make a difference no matter how small. I want to be the stone who causes the ripples that cant be ignored. I am tough when it comes to advocating for CYP and TYA populations with cancer, and I will fight hard until this war is won.

Arrrghh just noticed the bloody time! And I am a tad high from my meds so if theirs spelling mistakes or parts that dont make sense, I apologise.

So night night from me and we can catch up soon.

Wobbles 😀 x

Catch up…

Hey,

I realise its been a long time since posting on here (nearly 2 months), alot has been going on in my life.

I still have not heard from my university about allowing me more time which is really worrying me now 😥 . I hope I can as im so passionate about it and can see the significance of the research. SO its just a waiting game for now.

NEW RESEARCH…

finally I found some interesting research which explains some of the cognitive deficits and emotional issues I have related to my cancer http://www.cancernetwork.com/oncology-nursing/cancer-survivors-diagnosed-teens-risk-cognitive-problems This means that we may now move forward and help with these issues and hopefully prevent them.

I want to share my Brothers band with you, they are call URBAN THEORY! They are insanely talented, my brother sings and plays rhythm, so here is a video from YouTube, If you like what you see add them on: FACEBOOK https://www.facebook.com/urban.theory1?fref=ts

WORDPRESS https://urbantheoryuk.wordpress.com/

Arctic Monkeys-I bet that you look good on the dancefloor, ORIGINAL TRACK-Born Yesterday and Finally, Stone Roses-I wanna be Adored.

The Who-My Generation

Their own song Ugly Nightmares

Finally I want to share some pictures that make me happy 😀

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GOODBYE FOR NOW

Collie 🙂

I WILL be a Dr, you will be insignificant, some draw backs of researching AND my supervisor really is SUPER…

This was outside my house, I looked up and felt so lucky to have survived and to see so much beauty

Met with my supervisor today to catch up on my work etc. He is helping me to be able to take some more time due to long-term effects im suffering at the moment, and he told me I have support from some pretty important people. So Im feeling fab at the moment and having a celebratory coffee, some codeine cos the pain is always being a lil bugger, then back to the PhD.

This is where I wish I was today HAHA! so comfy, it took alot to motivate myself today, but I succeeded 😀

I now have ALOT of papers to plough through and organise the ones I have already in endnote with those I have printed copies of, as well as further categorising them. Tedious but is helpful to building the reasoning behind the research. My chemo brain is still really rubbish as well as pain, but knowing that the uni understands this now has really helped take the pressure off and Im really loving it again. I really want to do this for the rest of my life working with the charity to hopefully push research forward as well as continuing to keep it constant and not half arsed like some people do. This will be dedicated research within the area I am studying.

One thing I have started doing is keeping a diary on how im coping that day with my illnesses, but also how im coping coming across articles and research which are applicable to my life. People who have had bone cancer and other sarcomas really have a rough time, and it seems to get worse the further into remission you get. Things such as chemo brain, neuropathy and chronic pain, behavioural issues (probably due to the age it is most common in which is adolesence) and socialising issues due to having to re-integrate back into the cancer-free world you left behind. Hearts are also affected, digestive systems, second malignancies such as luekemia, anxiety and PTSD.

I also realised how awful people can be knowing of your conditions and saying to get over it, it was 12 years ago. Cancer is for LIFE! I even had one person telling me I need to just get over the depression cos its easily done, he said he did. However this individual didt have a year of their lives taken from them due to cancer at 14, partial internal limb amputation and muscle removed. He doesnt live with the guilt of why I survived and some of us didnt, some of the loses were so difficult, I never think I will be over them and I carry them with me everyday, everywhere. And I have an uncertain future. I wanted to really give him what for but decided to refrain cos in reality I feel very sorry for this person, he has a functioning body but does NOTHING with his life.

I can hold my head high, carrying the YOU (Young Oncology Unit) Angels with me, giving me strength to wake up and plough through my illnesses, and get out and fight for future children, teenage and young adults who recieve a cancer diagnosis. I will fight for them to get the right treatment, and to expect more than just ‘WELL AT LEAST YOU SURVIVED’. We should and can expect more than just survival, we should have QUALITY SURVIVORSHIP!!!!!!!!!

So today I was hurt by the words of an insignificant, who misinterpretted a joke, (now Ive reasoned it in my head) I am going to wake up and brush it off cos tomorrow is another day closer in making the cancer experience better from diagnosis to survivorship.

A night alone with Beauty to shnuggle ❤

Happy Nightime all and stay safe

C x

PS Thought I would share some pictures with you…

This was my prom, 6 months post treatment. The dress was custom made , my parents went all ou to make prom perfect ❤

 

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