Frantic February

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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.

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

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Cluck Out…

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the motherCLUCKER is smart eyeing you…

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oh for COCKS sake false alarm again!

It was the first bit of real quality, alone time Dave and I had due to him working ridiculously long weeks. I even 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. Made me think about Dave and I having a baby. I can’t wait, but it’s not that straight forward, I will have to come off all my pain meds which in itself will be incredibly difficult as some of my meds are opioids inc Fentanyl. If I don’t come off the opioids I risk having an opioid dependent baby. Pregnancy will probably be hell, I’ll be in agony as the pain that was managed will now be fully un-managed, with the added pains of pregnancy. But seeing my beautiful cousin I really do want to do my best. Another one of the joys long term effects brings with it.

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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 we 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.

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THIEF! You’ve been made lil Miss

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Ok Ill compromise…

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Now she’s happy I think 😛

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

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FFS! HAHA The cute face melts me every time

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Oh no its snooze time…

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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.

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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

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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 🙂

Christmas was ok…we spent it at home this year for the first time in many years, we normally spend it at my Grandparents in Wales. It felt wrong 😦 we missed them so much! Fortunately my Mum and Brother were able to go to see them on boxing day so they werent alone. My partner had time off so we ventured down to Wales and we had a mini Christmas dinner with them. My poor Dad had to work, he was missed, especially by me! We saw in the New Year, but I wasnt myself, I was irritated and had no patience, more so than usual. I cant explain why my moods shift so quickly and vastly, all I know is it hurts my loved ones which hurts me afterwards. Maybe its my pain, depression or that im just and A-hole. My fella did get a pic of the AURORA BOREALIS which got a smile outta me :p

 

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Taken by my wonderful partner BRRRRRRRRRRRRRRR!

As for seeing my fella more this Christmas and now, he got a new job less hours but I get to see him awake more. We have really got close again and I feel we’re more motivated as well. We got our first Christmas tree in our first house haha, I do like the little joys in life. I was spoilt rotten by my family and fella, its the first time ive had a fella spoil me so much not just Christmas but in everyday life, and I am eternally thankful for him.

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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).

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My Dad and Baby Brother x

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My Mummy and Daddy ❤ 

Talking of family, im feeling a bit sad about the relationship me and my little brother (17) have. He seems to not like me anymore, I piss him off just by being their. I was cheering him on Friday, he had a gig, he turned round and looked at me like I was a piece of shite. For some reason it brought me to tears, he has no patience for me and I feel so unwanted (im welling up writing this). I dont think he understands how much it hurts everytime he is nasty to me or is too cool to deal with me, but it guts me. Their arent many people whi can cut me as deep as he can. My Mum says its him growing up, I hope so cos I love him so much.

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,

These past few weeks have been a little hectic. My fella is on nights til the end of his employment, it’s awful not having time with him. We just exist at the moment, both flawed for very different reasons. He’s pulling 12 hour shifts and I’m in my parents care when he’s working.

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 😛

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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.

UNIVERSITY OFFICE

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…

BAND HEADLINE

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

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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 😀

As for my relationship with Dave. We have taken another step in our life together, we have a house (rented for the time being) but its ours and lovely and cozy. Its our haven and is bliss. Daves working his you know whats off and I have precious lil time with him. However he has tendered his resignation, no more 12 hour days! He interviewed for another place in the NHS. There was a fixed term position and a permanent position. An hour after the interview he recieved a call, he was told he interviewed almost perfectly and offered him the permanent position. I am like a pig in poo, I will have my boyfriend as himself and not a useless tired zombie!

Thought I’d share some pics of us both haha so here we are…

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Suited up for his interview, and our very serious faces…

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We can do serious as well HAHA!

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I had to throw in a posy one of me 😛

HOUSE HOUSE 2

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My lil garden, Im taking after my Grandma

Oh I met his Aussie family as well this summer, theyre are amazing! His sister is lovely and so nice to talk too, her kids were full of beans, and her husband is so interesting to talk too about music and gadgets haha. They were so happy to see the family after 2years. I must say I actually miss them and its frustrating that they are so far away. They did a photo shoot for her mums (Daves mum) birthday, I had 1 with Dave, they were beautiful!

PHOTO SHOOT

We were never going to do a boring picture, this is Dve and I summed up 😀

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.

INVITE

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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.

June was a pretty run of the mill month working and house hunting, nothing spectacular happening then.

JULY 3rd-Daves birthday 🙂 he turned 29! I managed to find him some chilli chocolate, chilli hot chocolate and chocolate nibbles that were dairy free, from hotel chocolat it was devine! He also got 2 t-shirts of the video-gaming variety.

UNFORTUNATELY

we didnt celebrate his birthday with his family as his sister ended up in hospital with a suspected subarachnoid haemorrhage! It was beyond frightening! We went to see her and she was in a bad way, however they were unable to establish the problem, so she is still having to have tests. It has brought me and her closer together tho, I wanted to cry and still feel very scared for her. She definately has been effected, slurred or jumbled speech, loss of words, fatigue, low tolerance when cognitively overloaded especially when shes more tired. Thankfully ive been able to be there and she knows she has alotta support behind her.

AUSTRALIA…

Daves eldest sister moved to Australia 2+years ago with her husband and kids, so I was able to share in the families excitement when they flew back 2 weeks ago. It was amazing seeing how happy they all were, a moment I will treasure. We went to see them all on the weekend and went out for food for Daves birthday with all the family together for the first time in years. I have to say, his sister and her husband are lovely and funny chilled out people, they have 2 gorgeous children. It was one of the best days Ive had in a while and am so pleased his family like me 😀

NEW HOME…

WE FOUND A NEW HOME!!!!!! We got the house we wanted (rental at the moment) and cant wait to move in. Its lovely! we will be painting as its a bit dark in the kitchen and needs brightening up, so my brother and parents have volunteered to help as poor Dave is working. I did get the wind knocked outta my sails when we got the keys as we found an ants nest in the corner of the living room, so thats post-poned us in moving in 😦 but its not too major.

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…

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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.

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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’. Excuse my language as I am very passionate on this issue, F&*K THAT, 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, miss my fella though 😥

Happy Nightime all and stay safe

C x

PS Thought I would share some pictures with you…

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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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