“ Time to hang up the dancing shoes and return to my slippers”

What a crazy three weeks- I’ve eaten out, I’ve partied like you wouldn’t believe, I’ve got a tattoo, I went to the first ever Cancer Chicks X Trekstock event, had return to work meetings and most importantly started planning a fundraiser for charities now close to my heart. Lastly on a one negative note, experienced my first cold after being poorly which sent my anxiety through the roof, but I’ll touch on that a little later. me.png

The celebrations have been mental but- oh so enjoyable. I remember all them months ago I would sit on my bed watching Instagram or Snap Chat stories (yes sad I know, but what do you do when you have no life?) watching my friends live like normal 22 year olds without a care in the world, how I wished It was me. It used to send me over the edge to the point I wouldn’t look at my phone on a weekend. I couldn’t deal with the fact the choice of whether I wanted to go out or not was taken away from me. But then just like that; I’m back there joining them. I often get comments said to me, “I’m sat in watching your stories now” to which I reply, “I’m making up for lost time”. But now I’ve decided to hang up the dancing shoes and return to my slippers. Saving for a house is back in full swing (even though it never really stopped, but we are now on a mission) and I need to concentrate on getting my strength back up properly so I’m ready for my next challenge.. work. Yes you read that correctly, WORK!

 

I’ve kept in touch with work the whole way through my diagnosis. I’ve been extremely lucky that my place has been put on hold for me at University so I can return to my studies and continue training to be a; Trainee Nurse Associate a role I have always aspired to do. I’m hoping to get one of my first 3 monthly check up’s out of the way which will be around May time, then return to work in June. This will officially be a year after I went off poorly (all being well). So as you know me I’m completely over the top, maybe too organised and a tiny bit OCD I take after my Dad, so I’ve been out and bought;

  • A new lunchbox
  • A water bottle which you can also defuse fruit in the middle
  • A mug for my Green Tea
  • My favourite multi way pen
  • Mini notebooks for my memory (chemo brain is a thing people let me tell you that!)
  • And finally a new Fob watch as my old one has broken probably because it has been out of use for so long.
  • I’ve got a brand new uniform for my role (as I picked it up at my first ever CT Scan before I got my diagnosis).

So I am officially ready for my start date!

 

 

I’m starting with 10 hours for the first week and these hours increase each week. No two shifts will be together so I can recover from my first shift before my next and no nights for three months, as Nurses know these completely mess up your sleeping and eating pattern up.

I am excited to get back to work but I’m not going to lie I am very anxious. Can you blame me? I’m going back to work in a Hospital where I’ve spent the last 7 months of my life and where I was told the devastating news. Some call me crazy, they are probably right. But it’s what I love to do. I’ve started going back into work to see my colleagues old and new and having a brew with them, this is so lovely to do as each time I go I feel it gets a little easier. Oh how I have missed their faces.

Within these crazy three weeks I also got the chance to finally meet some of my fellow “Cancer Chicks” at the first ever Cancer Chicks X Trekstock event. This was so amazing. Girls I have been speaking to for months I finally got to hug and share our stories and experiences in more detail. The whole night I didn’t stop smiling, I took my Mum, we drank cocktails (Mum’s were non-alcoholic as she was my driver haha!), got glitter put on our faces, was styled with clothes by stylists and got to chat all night. It truly was the greatest night and such a success. We came away with brand new clothes, bags, Bare Minerals lipsticks and gloss and sample perfumes all funded to the charities Cancer Chicks and Trekstock.

 

06/03/2019-I got a tattoo. Since being poorly I gained the nickname “Warrior” especially from my Mum. My Brother (Lewis) drew the tattoo for me. I wanted it personal and to mean something to me. So I got WARRIOR on my wrist but the “O” is a green cancer ribbon for Non-Hodgkin Lymphoma. I absolutely love it 💚. Every time I look at my wrist it’s a reminder of what I’ve been through and continue to go through and reminds me of how far I’ve come and that anything is possible.

 

On another positive note, I am now planning my fundraiser to raise as much money as I can to repay Ward J94 @ Leeds St James’s for their services and saving my life and also Lymphoma Action so they continue researching and ever evolving treatment. The night features £5 per person on the door, a raffle with some amazing prizes all gifted from businesses, an auction with some special prizes, a DJ, dancing and lots of drinking raising a glass to a good cause and most importantly celebrating.

Now for the only negative note as I’m always honest with my readers. This dreaded cold. I’ve been sneezing a million times a day, blown my nose a thousand times and not to forget I’ve lost count of how many times I’ve taken my temperature, the anxiety is too much. This is the first little bug I have had since finishing treatment, but like people say it’s my bodies way of showing me it’s becoming immune to a bug. However try telling someone that when their anxiety level is off the scale, haha!

However I am getting there and I think I’ve dealt with it quite well surprisingly, with the help from Olbas Oil and Green Tea with Honey and Lemon to boost my immune system.  Now I know why you have to be so careful during chemo, this would have floored me if I was still on treatment… seriously.

So that’s my crazy life summed up in a blog post for you.

Thank you to everybody I have celebrated with (you know who you are) you’ve honestly put the biggest smile on my face. The biggest of celebrations is yet to come though at my fundraiser and I cannot wait.

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CHEERS!!

Lots of Love, Ashleigh Maggie xoxo

Did somebody say R.E.M.I.S.S.I.O.N?!

Well where do I start?

A lot has happened since I last wrote to you, I actually can’t even think straight when I think about what I have done/achieved over the last few months. My life has literally been crazy!

I finally got the results I was waiting for after my biopsy and to say I was nervous was an understatement. It was the 03.01.2019. I was praying for good news, you know the saying ‘new year, new start’ as cliché as it sounds this is what I most praying for. We got to St James’s and I remember walking up to J94 (Youth Cancer Ward) to have my bloods taken before my clinic appointment (this is the normal routine), whilst I was having my bloods taken tears were streaming down my face. I remember the Nurse asked me ‘’what’s wrong’’ and I replied ‘’I’m just so nervous for these results, these determined whether I have more treatment or not’’ she hugged me tightly whilst I sobbed with fear. After 5 minutes I brushed myself off because I didn’t want my Mum, Dad and Connor to see me crying (I’m not strong all the time, but I think its normal to break down now and again…. I’ve been told anyway).

The waiting room was soooooo busy. You can’t even imagine it. Your sat there around 50+ people (just on that day and that afternoon) I always sit there nervously thinking all the what IF’s because as soon as I’m in that waiting room positive thoughts go straight out of my head! Literally. I always know when it’s my turn as my lovely Specialist Nurse has to get extra chairs for the consultation room due to the fact I always take my army with me unfortunately my brother Lewis couldn’t make the last two appointments due to work commitments, but he was always the first one I called straight after clinic to inform him on the results.

‘’Ashleigh Rimmer please’’

These words will forever haunt me. We sat down with my consultant and the first question which Is always asked Is ‘so how have you been?’ every time I start crying straight away I am possibly the most anxious person in the world now, I can’t deal with sitting around I just want to know my results straight away. It was good news; ‘’we have found no Lymphoma in your biopsy sample’’ I couldn’t believe it, I couldn’t speak I just cried and cried. This was only the beginning of the good news though, my consultant proceeded to say to me I can go and eat what I want WHEN I WANT, it was music to my ears. HELLO JADE PALACE, HELLO PRAWNS!!

Usually I would go to my clinic appointments every 3 weeks but due to the good news my consultant didn’t want to see me for 8 weeks but within that 8 weeks at 6 weeks I had to have another PET scan to double check everything and to make sure there was no new growth. So this is why you’ve seen me out partying, living my best life, because I had 8 weeks of freedom! You feel like you’ve just been set free, finished school again for the school holidays or let out of prison. Not that I’ve ever been in prison but I can imagine this is what it feels like haha.

During this time as you all probably noticed I got to do an amazing article for Burnley Express. I me and my Brother Lewis met with John Deehan who works for the paper and shared my story with him because I want to try and get as much awareness as I can out there. So if you read it online or bought a paper thank you so much I REALLY APPRECIATE IT!!! Look Mum, that’s me on the front of the paper again haha! I still can’t quite believe I made the front page.

 

However them 8 weeks were over in a flash. I actually forgot all about the ‘cancer’ the ‘appointments’, I felt so well, so healthy but the nightmare suddenly became a reality again!

I had my PET scan on the 15.02.2019 then two weeks later I was back to Leeds for my results 28.02.2019. I thought I was nervous before but on this day I experienced a whole new ‘nervous’ I had finally got a bit of my life back, a new life and I became to realise that it could all be taken away from me again. This I couldn’t deal with.

That wasn’t the case because at 15:30pm on 28.02.2019 I got told the words I have been longing to here for 7 months ‘’it’s good news you are in remission’’. I couldn’t believe it.

I finally got to ring that BELL!! The sweet, sweet sound of the bell was amazing and so emotional. I only just held it together.bell.png

Pepper the Picc Line was removed, which I’m shocked as I weirdly miss it. What I don’t miss though is hanging my arm out of the bath or putting a protector on when I had a shower, I am now back in full swing singing in the shower or dunking in the bath. Its literally amazing.picc line last pic.png

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I am seriously on cloud nine at the moment. The celebrations have been mental and I haven’t had a chance to sit down and process what has happened until this very moment writing my blog. I’m in remission, I did it, I beat cancer. My recovery Is still long but I will continue to focus and take each day as it comes. Slowly but surely I will get there. I’ve got so many exciting new chapters to come; going back to work and just genuinely living life to the full.

A very important message; I am going to be doing more fundraising and the blogs will definitely be continuing; they don’t only help me but they help other people and that was my aim. Thank you again for the continued support none of it has gone unnoticed it’s what keeps me fighting.

 

 

What A Nightmare!!

There has been many of nights I’ve laid in bed crying myself to sleep wishing I just had my normal life back. Everything seemed to be falling apart even more than they already had and I couldn’t get my head around the fact I needed surgery.

The morning of the biopsy arrived Wednesday 19th December; YEP just before Christmas, GREAT! I had to be at Leeds St James for 7am!! This resulted in us having to get up at 5am and start travelling to the hospital at 05:40am. What an early start.

We arrived at the hospital and there was so many people I remember turning to my Mum and saying; ‘all these people are having surgery?’ I’d never seen anything like it because I had never had an operation in my life. We walked onto the Pre Assessment ward and I got told to wait in the pre waiting area. I instantly knew this was the area where they leave you ALL day because your last on the list. Absolutely brilliant for my anxiety levels.

An hour or so later still shaking like a brick the Anaesthetist called me. I immediately started to cry (yep I know, like a baby and I don’t care, I was petrified), he was lovely he asked me what I was so scared of, and I replied ‘being put to sleep, what if I wake up? What if I don’t?’ to which he explained he did this everyday and he would be with me through the whole operation keeping a very close eye on me.. so basically he knows what he’s doing, it still didn’t relax me though! After the chat I got sent back to the dreaded room where everyone was sat in silence and it was roasting.

A few minutes later the Registrar came in to see me and drew a massive arrow on my left side, I guess just in case they forgot which side… Jesus Christ! He told me I could be waiting a while as I was last on the list. That was until about half an hour later I got called, my Surgeon had bumped me up to second as he knew how anxious I was, and would probably end up leaving if I had to wait until the afternoon, that gave me enough time to talk myself out of it haha! arrow.png

I got taken into a cubicle where I had to put a gown on and ted stockings, sexy! The next 30minutes seems a blur to me and the next thing I noticed I was on the trolley in the anaesthetic room, my Mum was with me of course, they allowed her because I was so nervous. I was given a drug to relax me but to be honest it made me feel extremely sick and dizzy I felt really drunk, I kept saying to my Mum, the Nurses and Surgeon I can see three of you, the next drug was to put me to sleep GA they hadn’t even put it all in and I was already asleep, my Mum said I had the last word though. I wanted to have a nice dream so I told them all I was going to the Maldives but it didn’t happen I was gutted when I woke up!

I was over an hour in Theatre because unfortunately they couldn’t get a sample via bronchoscopy so they had to cut me at my left side just below my arm pit, take away some of my ribs to gain the best sample they could, ‘the hot spot’ they called it. I was happy about this when I came round because I definitely (hopefully) wont be doing this again in a rush.all my attachments.png

After coming round at 13:00pm and finally arriving on the ward getting to see my Mum and Dad at 19:35pm (yes you read that correctly, 6.5hours in recovery, nothing was wrong with me ‘apparently my bed wasn’t ready’, my ass! But in all honesty I think they forgot about me) I was led on trolley for this many hours, my bottom was killing me and I was only given 2 glasses of water. Drifting in and out of sleep I began to notice the time was getting later and later each time I woke up, so I demanded to ring my Mum. I didn’t have a clue what was going on. Bless them both they were sat on the ward in the freezing cold waiting room complaining every half an hour because I hadn’t arrived yet. Three Rimmer’s all complaining, I feel sorry for the staff now!

That night I got into my bed feeling like I’d had the most hectic day but I’d been asleep for most of it! I was happy away with my morphine button which I didn’t really press because I think I was still high as a kite. Next thing I was wakened for observations this was when I had spiked a temperature, so the doctor came in to check my bloods to see if I had an infection or was just due to the fact I had just had an operation. As he left the room I went to the toilet and in front of me was a mirror I noticed that my left breast was swollen up right up to my chin (honestly) and it was solid. I immediately called the doctor back in, the Surgical Registrar came in to have a look at me, I had air under my skin; Surgical Emphysema– the more technical term. Basically this happened to me because my lung cavity is damaged from all the chemo, so I don’t heal like a normal individual would, I take a little bit longer and where they had gained the biopsy sample from my lung air was leaking out when it was contracting (when I breathe) to the rest of my body. I was warned about this risk in my consultation but I was that mortified I had to be put to sleep I didn’t really think of anything else.

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Morphine Button 

The next morning I can only explain I looked like a moon head. I screamed the nurse came running into my room, ‘my face, my face’ I screamed. I was huge, think of the scene on Willy Wonker- Violet Beauregarde (when she blows up)  I was like that but just my chest, back, neck and face, ( I’m not even over exaggerating) I looked the double of my Dad but times him by two haha! My observations on the other hand were fine so they tend to ‘watch and wait’ with Surgical Emphysema to see if the body begins to absorb the air itself, if not a blowhole is inserted ( I turned to my Mum and started crying because I only thought whales had blowholes) a blowhole is where they make a cut on your chest, quite deep and insert a sponge which attaches to a machine then the air is sucked out that way.violet.png

They again allowed my Mum to stay with me because I had my own room she came on straight away, I rang her in the morning crying saying ‘I’m fat, I’m fat’ she had to ring the ward because I wasn’t making sense at all. I was so relived when she arrived everything seems to go wrong when I’m left on my own!mumma.png

 

By 18:30pm I started not being able to swallow, I couldn’t eat and it was becoming difficult to keep my fluids up. I pressed the nurse call bell and demanded a blow hole instantly I was getting bigger and bigger, also tighter and tighter, my voice had completely changed (I sounded like a chipmunk being strangled). The blowhole was inserted and my god it was painful. I think I nearly broke my Mums hand and don’t think the Surgeon appreciated my singing throughout, I sounded like a cat being strangled.

The blowhole was changed twice in hospital, they have to keep changing it to make sure it is clean and so your skin doesn’t start to heal over it. The pain is unbelievable, they didn’t numb it and it’s not exactly normal pulling a sponge out of somebody’s chest over and over again.
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I finally got to go home for Christmas on Sunday 23rd December but my handbag ( the air machine) had to come with me. I was also in so much pain (it was the worst thing I have ever encountered) but I was just so thankful I was home. You do miss your home comforts.

Thursday 27th December we had to return to Leeds for the blowhole changing again. I was so scared I couldn’t prepare myself for it. I had to have an x-ray before to make sure the air was going down. After the x-ray the Surgical Registrar came to see me because he said it looked to have worsened on the x-ray, I was so confused because my face, neck and back had completely come down but however my right breast was still swollen (I looked like I’d had a botched boob job). Once he looked at me clinically, had a feel of the air, the sponge was taken out he said my body should absorb the rest and the wound was nice and healthy so needed to be stitched now.

JEEZ!

Nobody prepares you for stitches, they numbed it but my god I could still feel it. Even when they are taken out don’t listen to people if they say they don’t hurt, they lie😉

So now I have two wounds for the price of one. Which are both healing nicely. I’m still in a little discomfort but I need to remember I’ve not long had the procedures done so I need to cut myself some slack. But what a nightmare!!

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At home with the Blowhole 

Lots of Love Ashleigh Maggie xxx

 

 

 

 

 

A bump in the road and scanxiety!!

For months now I’ve been thinking what I could write about next?

Having finish my 6/6 cycles of chemo and the last one completely taking it out of me proving it was ONE of the worst ones yet, my blog got pushed to the back of my mind. 

I think I found this one so horrific because it was my Aunty’s wedding the weekend before, where I had the best time ever! But jumping straight into chemo Monday (tired from the wedding after dancing my lil ass off) chemo completely wiped me out. B2C88F48-9F1D-46D8-B88E-2524F3154F56.jpeg

Then the post arrived Wednesday morning 2 days post chemo. And there it was my dreaded letter for my PET scan. This scan was to determine if i needed more chemo/ different chemo and stem cell transplant or if the cancer was only active in one area I could be treated with radiotherapy or finally if the cancer had gone. The minute I opened the letter, my body went into anxiety mode… scanxiety actually. 

So not only was I now beyond tired, I was now in fear, and the scan wasn’t until the 10th of December. I knew already these next few weeks were going to be horrific. That they were. 

My cough came back worse than ever, I have struggled massively with phelegm as I had a build up in my left lung but it was unable to move due to the tumour but this time it decided to move and cause me havoc!! (Sorry I know that’s disgusting but I promised I would always be honest, I actually found out at my surgical consultation it was dead tumour.. MING) due to my anxiety, I wasn’t sleeping and I just didn’t want to go out anywhere or socialise with anyone; because I knew the question ‘when is your next scan’ or ‘what’s happening next’ would come up and I couldn’t deal with the constant reminder. I even stopped going on my phone so nobody contacted me (now that’s a biggy, it works tho). I didn’t tell many people this time to stop the messages before hand, on the day of my scan and results day. As much as I appreciate the messages of support my poor lil head couldn’t deal with everything at once and decided this was the best for me. So if you didn’t get told or I ignored your message, I do apologise but you will understand if you ever experience scanxiety yourself. 

The day of the PET Scan arrived and I was shaking like a brick, I’m not sure if it was down the the fact I had to eat before 6am or the fact I was bricking it… probably both. My Mum comes with me every time I don’t think I’d go through with it if she wasn’t there. She always sits in the room with me whilst I have the cannula, because yes believe it or not I’m still petrified of needles. I’ve got used to Pepper the Picc Line which is no pain at all. (This time it was put through my picc, I  was so happy) 

After the injection Mum has to go to another waiting room because for the next hour I start to become ‘radioactive’ and for 8 hours after, which we can never understand because I’m round her then anyway!!  I asked if I was glowing the first time to which they replied no! I was disappointed. Once the hour is up they take you through to the scanning room. This is it. This machine will tell me what’s going on in my weird body. I lay flat with my arms above my head, fingers crossed, praying for it to be good results. 

The PET Scan is pretty much like a CT scan (if you have ever experienced one) however your whole body goes through it extremely slowly and your face is nearly touching the machine, there is plenty of times I’ve wanted to shout out; ‘I’m A Celebrity Get Me Out Of Here!!’ Haha I wish. 

After about 20/30minutes the Scan is finished and your on your way. FOOOOOD! 

To take my mind off the results in 3 days I went to my mums best friends house (Janes) to keep her company after having a recent operation herself and also to see my bestfriend Emily. We did art crafts, ate Christmas food and decorated the Christmas tree it was perfect. That was until Wednesday came around I was about to set off and my phone started to ring. It was the hospital. Asking if I could come to an appointment on Friday at 11pm to see the surgeon. I instantly went into panic mode, “I think you’ve got the wrong person I’m not having surgery” “is it Ashleigh Rimmer?” “Yes”  “I haven’t had my results yet I know nothing about surgery” to which she replied “I’ll ring you back” then the panic attack started and my Mum instantly came home.

Thank god for my Nurse Specialist who found out the information for me.. BUT I ended up knowing half of my results over the phone due to the mistake the booking office lady made. After my 6 R-CHOP chemos I was left with a ring which they wasn’t sure if it was inflammation or still cancerous….. biopsy it was no messing about now. I calmed knowing it was only a biopsy as id had one before… that was until Friday when me and my dad went to see the surgeon…GENERAL ANAESTHETIC that’s all I’m going to say.  

Thursday came around and my consultant moved my appointment from 15:45pm to 13:00pm because she knew my anxiety would be through the roof. She explained everything clearly too me and was so apologetic, the lady who rang me was suppose to tell her the appointment time not ring me.. oh well! Basically this biopsy needed to be done to determine the next step. If I am left and no more treatment or stem cell transplant..queue the panic attack, all I remember hearing was “Ashleigh breathe”, but I couldn’t. I was petrified. The big C was really starting to test me. 

Friday me and my Dad went to speak to the surgeon he was really nice but I honestly couldn’t stop crying because I had to be put to sleep for the procedure. After being a Cadet Nurse at college I did a placement in theatres.. let’s just say I wish I didn’t then I wouldn’t know as much as I know. My Dad was so supportive and the day was sooooo long I was seriously fed up. But it didn’t stop us smiling until I got home and instantly cried when I saw Connor and my Mum. I felt like I taken 10 massive steps back. 

However it could be a hell of a lot worse! 

To be continued….. I’ve just a small hurdle to get over…. hello biopsy arrrghh. 

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Life is so different now

12 hour shifts, day shifts, night shifts, endless hours on the laptop when I got home. This was my life. I loved it. Now I sit staring at the same 4 walls day in day out wishing I could be normal again. night shift.png

As many of you know I’ve always worked in the Health Care Profession. Visiting houses (district care), working in a Care Home, then finally I got a job at Airedale General Hospital where I was a Band 2-HCSW (Health Care Support Worker) on the Acute Admissions Unit, it was hectic but I wouldn’t have changed my job for the world.

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This is my Grandma Lingard who I would often visit whilst doing my district care rounds!

After applying for University straight away after leaving college I applied straight for Midwifery, I unfortunately didn’t make it. But back then as a young 17 nearly 18 year old General Nursing didn’t appeal to me. I wanted to specialise straight away and after missing out on the 18 month top up course to specialise as a Midwife I didn’t fancy going to University for 7 years instead of 4 years and 5 months, so I decided to take a year out which I guess turned into 3.. nearly 4 now. I kick myself because I would have been qualified now.

I thought my chances of becoming a Nurse were over until 30th April 2018.

I applied for the Band 4 – Trainee Nurse Associate role where you attend University one day a week and the rest is practical. Working on a base ward and attending 3 week block placements 3 times a year.. may I add still getting paid, winner. I loved it, I moved from the Acute Assessment Unit, to work on a Female Surgical Ward, completely different but I was starting to really take to the ward and enjoyed doing something that was a challenge. That was of course until May came around and I fell ill and unfortunately I had to stop going to work due to me having no energy and basically going back and forth to the hospital for test every day. Never In a million years did I think I’d be off for this long, it’s been 6 months?! And I’ve still a long way to go.

Life is so different now…

Cancer changes the simplest things, things you wouldn’t even think would have to change. Certain foods can you believe it?! I remember being handed a booklet when I first got my diagnosis and thinking ‘how in the world does what I eat affect my body?’ You’d be surprised. Here are few foods I’m banned from eating for example; shell fish and I LOVE prawns, runny eggs (god I miss boiled runny eggs and toast), simple sausage rolls from Oddies, I’m not allowed any form of food from the deli counter, everything must be vacuumed packed. It’s quite depressing really. And the cravings are insane. I don’t think I’ve stopped eating humus? Who even craves humus.

Warmed up food is a no go!! My poor mum has to cook every meal we have from fresh and by god she is doing a great job. She’d give Gordon Ramsey a run for his money in the kitchen, I’ll tell you that now.

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Home made!

I came to the realisation it’s like a pregnancy diet after speaking to my good friend Chrystal as she was pregnant at the time. I think we moaned for a good hour over the fact we both couldn’t eat prawns, we adore love them.

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Me, Chrystal and Bump!

Although the thing that was significantly different was I don’t have the joys of the baby at the end. I guess I’ll be left with the constant worry, has my cancer come back? Will it come back? But I’ll cross that bridge when it comes to it. I’ve a great counsellor to help me deal with these issues.

Weekends have also changed. I’ve notice that me and Connor used to eat out.. ALOT. Once that’s taken away from you, you begin to notice. I’m not allowed in busy places due to infection risk. And it’s not worth the risk eating takeaways and meals out at the minute. You never know what’s going on in that kitchen, is your food freshly made? Or just warmed up? Has the cook preparing your food just sneezed or been to the toilet and not washed their hands… EW. The thought of it now makes me sick. How times have changed!

However Fish and Chips is the one and only takeaway I am allowed, can I get a WOOP WOOP?! How kind are they letting you have one takeaway?! This is only because it is cooked from fresh in front of you, that is once you tell them you’re on chemotherapy. Although I don’t think I’ll eat another Fish and Chips after this, they say chemotherapy can make you hate certain foods once you’ve finished and trust me, I’ve eaten a lot of Fish and Chips!

As I’ve previously mentioned I’ve always been a skinny one. But before I fell ill I managed to get my weight to 8.5 stone which for me was a lot and I actually looked a ‘healthy weight’. I dropped to below 7.5 stone when I was admitted to St James Hospital. It was very noticeable. Losing this much weight I had to change my clothing style which has also probably affected me the most. Now I’ve learnt to deal with it but at first every time I got dressed up to go to out I had a meltdown, I didn’t look like me at all. I couldn’t stand it. I felt thin, I looked Ill and instantly just wanted to put my pjs back on, sit in a dark room just so I didn’t have to go out and socialise with people because I didn’t feel like me. This is when I would have a hard word with myself, ‘why are you letting it win I would question myself?’ So to cheer myself up, I online shopped like you wouldn’t believe. I had a million spare coat-hangers and they needed filling and I guess it made me feel better. Win, win really.

On a more positive note I do go out and do things now but obviously they are limited. I tend to go to Asda and Next that’s a big and exciting day for me on my better weeks. I practically live in my Grandads recliner chair on a day to day basis (he used to be very protective over it but now he calls it my chair), I go up to my Grandma and Grandads nearly every day of the week for a change of 4 walls and happily sit and watch my Grandma all day, she cleans, she irons, she cooks, she just doesn’t stop… I could do with some of her energy.

I’ve just recently celebrated my 22nd birthday, it was very different this year BUT I still had a party, boy do the Rimmer’s know how to party, and it was so special, a week of celebrations with the people I love the most. Everyone who attended had to be 100% fitness no cold or sniffles. All my closest family and friends were there. I had my make-up done and for one night I felt like the old Ashleigh was back. It was quite overwhelming. It made me realise how a life threatening illness has shown the strengths of some of my friendships and the support from my family, friends, everyone in fact is phenomenal.. it’s what keeps me fighting.

You learn to live with cancer, yes your life changes dramatically but you learn to deal with it, it’s only for a period of time (people keep reminding me). Hopefully soon I’ll be back to eating at my favourite restaurant-Jade Palace, ordering a take away (me and Connor have made a promise though only one a week) and eating countless sausage rolls from any deli counter I can find. Doing normal things with friends like a 22 year old should and most importantly getting back to doing my training and helping poorly people back to their baseline which I love to do. And will probably now love more than ever, having been on the receiving end for quite some time.

I guess what I’m trying to say is, don’t take life for granted. Everyone moans about going to work every day, the boring routine and simple things in life, but honestly when that’s taken away from you. You miss the normality more than ever.

 Live life to the full. I know I do now.

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Christmas Day 2017!

 

A Brothers Perspective

“Don’t worry, I am going to kick it’s ass”

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Me and Lewis, My 21st 2017

Those were the first words my sister said to me after her diagnosis.

Let’s rewind a couple of weeks. As some of you may know, my job requires me to work unsociable hours (to say the least)! Meaning time spent with my family is limited, we often pass like ships in the night and this would be considered normal for us.

What wasn’t normal, was the amount of times I would get home and my sister had been or was in hospital. I often wondered whether it was the hypochondriac in her taking over, but the more and more she went the more concerned I became, as did everyone else.

I managed to visit Ashleigh on a Saturday where she was filling me in with all of the ‘scary’ illnesses they had thrown at her so far. The optimist in you always deflects the possibility of such illnesses becoming a reality of course, and I would often find myself telling Ashleigh – “not to worry, you will be fine”, even though every time I spoke those words I believed it that little bit less myself.

Another week and a few days went by, and still Ashleigh remained in hospital and then it came. Friday 20th July, when fortunately, I was working from home. I can remember it so clearly, I was typing away and thinking – I would literally rather do anything rather than this Premier League Report right now……… Be careful what you wish for!

My phone started to ring, it was Dom, quite strange considering although we had been best mates for over 10 years, we very rarely call each other.

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Just a standard Sunday night out down Burnley, Me, Lewis and Dom

Dom: You need to ring my mum now!

Me: Why? What for?

Dom: I don’t know, just do it!

And so, I did just that…

Tavia (Dom’s Mum): Lewis, its Ashleigh, she’s got cancer.

There is nothing in the world that can prepare you for those words, I was in utter shock. The next hour is a blur to me, still to this day. I got in the car and set off driving home, not sure what to expect, I didn’t even know if anyone was there? Quick stop off on the way to throw up, again probably the shock and there I was, at home on my own pacing up and down the bottom floor, just waiting for the rest of my family to return home.

I would be lying if I didn’t think about the worst, it’s natural to do so. But the next words I was to hear changed my outlook on the situation completely and impacted me more than I could ever imagine:

“Don’t worry, I am going to kick it’s ass” – as we both stood there holding each other not wanting to let go.

Yes, that was my wonderfully brave, strong, amazing sister. I won’t give her too much credit, she did have a mini breakdown ten minutes later, but I suppose we can let her off considering?

Seeing all the sadness that followed that day, the family members upset on the phone, the friends breaking down in front of Ashleigh and my Mum and Dad in pieces, brings me to the reason why I asked Ashleigh if I could write a piece for her fantastic blog.

Receiving the news, you have cancer is bad enough, and like I myself have confessed, makes you think about the worst (if you let yourself). Something that I hated seeing Ashleigh go through, would be people visiting getting upset and break down in front of her, which if you are reading this and thinking ‘I did that’, don’t worry you weren’t the only one! Every time this happened, it got the cogs turning around in Ashleigh’s head.

Why is everyone so upset?

Is the situation that bad?

Maybe the worst is actually coming?

That day I made a promise to myself, I would never let my sister see me upset, I would only let her see me in a positive outlook, as that person that she can talk to and know that when I say “everything will be fine” I mean it, and I think she appreciates that.

Therefore, my first piece of advice to anyone going through a similar situation is; you must be the one that is positive and provide that little bit of normality in a life that is no longer normal, and that person will appreciate that and you more than anything.

Be the one that she/he wants to pick up the phone and text when their down, or call you when its all got too much for them, although on that point, Ashleigh once did call me and when I answered her first words were: ‘thank god for that, I am having a break down and you’re the third person I have called and first to answer’! Hopefully I was promoted after this incident! 

Just to mention, I am not saying that it is all sunshine and rainbows by any stretch of the imagination. For the first week admittedly when all my family were asleep, I would even wait for Katie to fall asleep before I would let all my emotions loose and cry myself to sleep. It is ok not to be ok – but at the right time, and in front of the right people.

 

Maintaining this outlook on an awful situation takes a lot of strength, but you owe it to that person to show it as it is nowhere near as tough as the battle they are currently fighting. Prepare for the unexpected, the random phone calls, the outbursts, the arguments – you are going to face it all, but if you can be one of the people who they turn to in their time of need, you know you are doing it right.

The past few months (as strange as it sounds) have seemed normal, apart from Ashleigh now having less hair than me and yes that is tough considering my extremely fast receding hair line! We laugh, we joke, we do things that normal families do, and we are getting through this, together.

Before I finish, I would just like to speak about the other day, Ashleigh’s ‘half way point’ consultation, where we found out how her body had reacted to chemotherapy so far, it was tense to say the least (as you’d imagine). We all marched into the consultation room as the hospital staff followed us with spare chairs thinking ‘what the hell is going on’ – I almost felt like saying ‘sorry, we come as a team!’ and the moment that followed I will never forget, a feeling I don’t think I have ever experienced.

The nurse began to explain the news that Ashleigh’s Lymphoma Cancer was shrinking and that was it, I was off! I stuck by my guns and said I wouldn’t let her see me cry, therefore I tried and tried to hold back the tears, of absolute joy I may add!

I was doing so well until we were sat waiting outside Marks & Spencer’s with Ashleigh inside collecting her prescription and I burst out into tears and with my mum stood next to me asking what was wrong, I simply just said ‘I am just so happy, its great isn’t it!’ and of course as mothers do she asked me if I wanted a hug – come on, I’m 26 and in public, who wants a hug off your mum? So, I kindly declined her offer to save myself the embarrassment!

And here we are, Ashleigh is doing great, and importantly her support network are there for her every step of the way. Whether it’s a friend bringing round frozen donuts, or a boyfriend sleeping on an air bed every night, or a Mum who goes to work late every morning to make her daughter breakfast to start the day right, or even a sister-in-law that conquers her fear of needles to have the flu jab – everyone is there every step of the way and everyone is positive. Which is what that little warrior needs and deserves right now.

 

Keep on fighting our kid, we are all so proud and we love you more than ever!

 

 

 

 

Hair Loss

And breathe… this is a tough one.

I’ve been thinking for a number of weeks how do I possibly put it into words to tell you about hair loss when I know deep down this is probably the one thing that has affected me the most.

I actually came to the realisation when I experienced hair loss how vein I was about my hair, making sure I got it coloured on time, making sure once I’d straightened it there wasn’t one kink and you know what there are more things to life than having perfect hair! Also it’s a hell of a lot easier to get ready, I’m super quick now I just whack my hair on or a hat! No more washing (well I still wash it but its so much easier), drying and straightening my long locks that used to take me 2 hours… well that’s until it grows backme and chrystal.png

I’ve also come to the realisation I’m actually twinning with my dad haha! I also never thought I would hear my dad say ‘your catching up with me with the length of your hair ash’ or be washing my hair with baby shampoo because my scalp is so sensitive, how things change?! To be quite honest with you I don’t think anyone would know how it feels to deal with the loss of your hair, eye brows, leg and arm pit hair (well them two are quite a blessing I must say, no more shaving hurray!) until it happens to you personally. Everyone is an individual and deals with things differently.

When I was told I’d be having chemotherapy asking if I would lose my hair was one of the first questions I asked. I also asked the nurse on my first cycle of chemotherapy when she was manually pushing my chemo into my line (praying for the first consultant to be wrong) ‘will I lose my hair and also which bit makes me lose it?’ to which she replied ‘unfortunately yes you will, and this what I’m pushing through now causes hair loss’. GREAT. I remember looking at the liquid going into my Picc Line, into me and thinking (sorry for my French) ‘you bastard’.

Everything goes through your mind, ‘I’ve just got it the colour I’ve always wanted it? Will I suit being bald? Oh my god I’m going to have to wear a wig and hats? People will stare at me? And will my hair grow back?’ I have never felt heart break like it. I couldn’t stop thinking about it so I urged my Mum to text my hairdresser to come round to my house when I was home from hospital to cut my hair into a bob. If it was going to come out I wanted to donate my hair. My hair was cut into a bob and 14’’ of hair was donated to the Little Princess Trust as they were funding my wig for me due to me being under the age of 24, let me tell you these wigs don’t come cheap mine was £1300!! 

 

I got in touch with the Little Princess Trust who also put me in touch with Andreas Hair -Room-Leeds. Every appointment in 1:1, she makes you feel so loved, beautiful, my first appointment we picked the length and off her colour swatches of hair we matched my hair perfectly which I thought was going to be difficult due to my natural hair having different blondes. I also bought 3 hats from Andrea which are amazing, they are all bamboo material, so soft when you have them on and the wig wow its so realistic you can’t even tell!! The best benefit Is I only have to wash her once a month… Hallelujah! However hats are so much comfier so Hayley (my wig) only gets worn on special occasions now.

 

You’re all probably sitting there reading this thinking who’s Hayley? Has she gone mad? So here’s how Hayley the wig got her name; she’s named Hayley as when I was admitted to Airedale I made friends with a little old lady, she was so lovely I told her numerous times my names ‘Ashleigh’ but she didn’t quite grasp it, so from then on I was Hayley, all her family called me Hayley and in fact it even sometimes rubbed off on the nurses. It was so amusing because she didn’t have a clue what was going on! So when I’m in the wig everyone calls me Hayley. Its like I’m another person, she’s straight to the point, funny, can get angry at times but that’s just her and when I take my hair off I’m me again! 

 

I got home from hospital on the Tuesday and my hair was cut into a bob by Friday. I loved it, I thought I can really pull this style off, I could do it curly or straight. The bob lasted a week and a day by Saturday my hair was coming out.bob 1.png

My Mum and Dad had just gone to Harrogate for the weekend with friends on a well earned break so; Connor, Lewis, Dom (my brothers best friend) and Katie (my brothers girlfriend) were on ‘baby sitting duties’. Katie was on her way and Connor and my brother had just left the living room, I ran my fingers through my hair and my hand was full of clumps of hair I remember just being in shock and see Dom’s face in shock, I looked at him and said ‘I think my hairs coming out, let me do the other side and check’ it did exactly the same I screamed.

As soon as Katie arrived I followed her upstairs just saying ‘my hair is coming out’. I honestly thought I was ready for it and it wouldn’t bother me but it turned out to be the complete opposite. Obviously there are stereotypes for everything now-a-days and I was in fear I was starting to become the stereotypical cancer sufferer; no hair, hat on my head with no eyebrows and everyone will stare at me. I almost felt normal with my bob I could walk round Asda and those who didn’t know me wouldn’t know I had cancer, but now they will I kept telling myself. I was heartbroken. I remember my brother saying to me ‘so what if people stare Ashleigh, stare back and smile you’re stronger and a better person than they ever will be’ and you know what he’s right now I smile and wave even if I don’t have a clue who they are, they are looking at me so I’ll wave to embarrass them instead of them making me feel embarrassed. It’s quite amusing actually.

My Mum and Dad arrived home around dinner time the next day and I remember walking into her room and crying like I’d never cried before, ‘why now’ I said, I’d just got over which was the worst week of my life due to me being quite poorly on my first chemo cycle and then this happens, why can’t it give me a break?!. My Mum suggested washing my hair and seeing how much came out to which I agreed until I went into the bathroom ran my fingers through my hair and there was so much I threw it In the bath and screamed – NO!

I rang my good friend Sarah, she’s the only one who would understand my pain having been through this herself, I asked ‘what should I do?’ to which she replied ‘shave it, get back in control’, and that was that, I went back into my Mum’s room and messaged my hairdresser ‘can you come today at 2pm I want it all shaving off’ – my Mum was gobsmacked. I needed to gain back the control, I was not letting this beat me and it was the best decision I ever made. I wouldn’t have been able to deal with waking up every morning with more and more hair being on my pillow, it was bad enough losing it cut short to a number two, hair gets everywhere!

From 12:00 – 2:00pm I think I cried every minute, I kept looking at the clock, feeling my hair and just sitting there crying. Sarah came to hold my hand (she’s honestly my biggest inspiration and has supported me through so much, I can’t thank her enough), my Mum and Connor were also there, they are always by my side, I love it. There was a knock at the door, it was Carla my hairdresser, it was time.

Sarah and my Mum held my hand the whole way through, I could feel all the hair just falling around me, the snipping of the scissors and then the dreaded sound of the clippers, this was it. I made Connor watch the whole thing so it wasn’t a shock seeing me at the end, but I was scared how he was going to react when it was done. I remember asking him ‘do I look ugly?’ to which he replied ‘you look beautiful, I didn’t fall in love with you for your hair, I fell in love with you’ well that was it and I was crying again!

I finally composed myself and my Dad came home from Asda and lets just say it wasn’t the best reaction I was looking for, I don’t think he understood the words ‘Ashleigh has shaved her hair’ and shaved means as short as his! ‘Oh my god’ I think his words were to which I burst out crying, I knew he was just in shock that his little girl had bit the bullet and gone for it, I also think he was shocked because like I said it became a reality when my hair was shaved. He also said I looked like Sinead O’Connor and I can see the comparison haha! 

 

 

After everything had calmed down I remember trying on all my hats, at this point I only had 5, now I think I have over 20, glitter turbans, wrap head scarves you name it I’ve got it! I absolutely love them and now I don’t know why I was ever so scared to go out in one for people to see. Whenever people came round to visit me if I wanted them to see my ‘bald head’ I would just whip my hat off and say ‘right you’ve seen it now, if you ever walk into the house it wont be a shock now’ (I always keep a hat downstairs as I once answered the door to the post man without one on and I think I scared him, oops). Taking my hat off and showing people was my way of being in control, I experienced my hair loss at the end of my second week, during my first cycle. Very fast.

The day I lost my hair was one of the worst days of my life but it felt like a weight had been lifted off my shoulders, I guess I got a bit of my spark back.

And Breathe…