Hair Loss

This is probably the hardest blog post I’ve done. I’m super content with the fact I have no hair, because it’s all I’ve known for the past five months, and I’ve got used to it. I knew from the day I was diagnosed that hair loss was inevitable, so I never really gave myself the chance to worry about it. I’ve been really brave about losing my hair, but

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unicorns n filters

psychologically I think it has affected me in different ways. It’s not just losing/having no hair that you have to deal with, the difficult part, is other people. What they might think, what they might say… it’s really daunting. One of my biggest difficulties has been do I share this with everyone reading my blog, or do I keep this part private? I feel like I have been so honest, I often wonder, should I have just never posted anything about my cancer? Should I have just kept it private? But then I think of all the people who have messaged me to say I have really inspired them or helped them, and so many people have simply thanked me for choosing to write a blog, that I also feel I should continue.

I really do worry too much about what other people think, I’m sure there are people out

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days after shaving my head

there who think ‘why on earth would you share everything like this on social media’ but those are my exact reasons. So this is where my Instagram dilemma got quite stressful. Sounds ridiculous, doesn’t it? But I have had so many people who have left comments asking how I look so amazing still as I go into my seventh round of chemo, and people who have been to see me without my wig have been so surprised at how I’ve kept a ‘normal’ image of me on Instagram. It’s left me feeling quite guilty, like I need to reassure people that honestly, that picture just has a filter and a wig, it is still me but I genuinely have lost all of my hair. I just haven’t been brave enough yet to share that look on social media, which is sadly the world we live in now. I still find myself asking people ‘do you mind if I don’t wear my wig?’ when they are visiting, like I have to warn them for what they are about to see. I’ll often ask my mum if it’s ‘appropriate’ to have no wig on for certain people or if it will ‘freak’ them out, especially children. She thinks this is ridiculous and I should do whatever I feel most comfortable doing. But anyway my family are biased, they all prefer me without hair now and think it’s strange when I wear my wig! Hair is such a massive part of our image, for boys and girls, and I’ve honestly started to believe that bald is beautiful and I can’t believe more people don’t shave their heads… it’s so low maintenance!

So in September, after my second round of chemo, my hair started to fall out. I was told that this would happen at some point, but you still wonder how it’s going to happen…

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hair I had pulled out

will I wake up bald one day or does it fly out in the wind or what? Well for me, I was at home, and it started by little sheds of hair falling out on to my pillow, overnight. It was really fine hairs, like the kind of hair your pet leaves on the sofa, nothing majorly concerning, but something you’ve not woken up to before! I showed my mum and she said that it wasn’t much and that might be all I lose for now, and she was quite right. I was so scared to wash it, I just imagined covering it with water, and the whole lot sliding out in my hand, but even that didn’t happen so dramatically! I remember looking in the mirror, and covering my hair with my hands, trying to see what I was going to look like without hair, but just for future reference, don’t do that, it actually makes you look worse than you do without the hair!

I have been asked by people why I didn’t opt for a ‘cold cap’ during chemo. I only briefly asked my consultant about this, and she almost dismissed the idea straight away. Unfortunately for me, the type of chemo I was having would definitely cause hair loss, so putting myself through a cold cap would just be painful and ineffective. I’m not really sure but I think a cold cap is literally as it sounds, filled with cooling gel it manages to somehow reduce the amount of chemo that reaches the hair follicles. As the days went on during this second cycle, it was coming out in clumps. I couldn’t stop it from happening, so I was pulling it out myself just to show people how easily it was falling out… it was oddly satisfying! I remember pulling out one chunk to show my brother, and it left a view of my scalp, and this was so frightening. I knew my hair was coming out but I hadn’t seen actual ‘bald’ until this point. So then I really did stop pulling it out and tried to avoid more hair loss.

Of course this is so strange, I’ve gone 21 years not knowing what my head looks like beneath my hair, and I had never planned on finding out! That night after the pulling out, I was in hospital, and I went to sleep with my hair tied in a bun, hoping it would hold it altogether still. But in the morning, I woke up and it was like all my hair had died overnight. It had gone black, it was all matted together and I couldn’t even get the hair bobble out. This point got so frustrating, as there was still shedding on my pillow, a pile of hair next to my bed I’d pulled out the day before, and I just wanted to get rid of it all, I didn’t want to save it anymore. It was a Saturday morning and my brother and his girlfriend came to visit me on the ward. I was showing them my new matted style and we all agreed today would be the day we shaved it all off! I never thought I’d want to do this, but I was desperate to get rid of it all! We phoned my parents who were in the city centre at this point, with my grandparents, and they said they would buy an electric razor (or something?) and would do it for me when they returned.

I never thought I would be asking my dad to shave my hair off, what a bizarre life I am living at the moment. I have always been in such a battle with my hair, I’ve had hair

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the shaaaave

extensions on and off for the past four years, and have just always struggled with my natural hair. I think all the years of colouring it and bleaching it just ruined it, it didn’t grow for about ten years and when it did it just snapped off, so maybe in an unextreme way, I needed to shave it all off in the hope it grows back healthy and beautiful (I pray). It felt like I was gaining some control over this whole process, I didn’t want cancer or chemo to strip everything from me, so doing this felt as though I had made at least one choice about my body.

My family were there for support and there was definitely more laughter than tears during the shaving, and I didn’t look in the mirror until the very end. They did actually film the whole process but I’m not sure I’m brave enough to share it with the world, at the moment! It was really, really weird the first night I went to bed, resting my head on a pillow was so soft and cold. In hospital you’re in the most natural environment to go through this, all the nurses were so surprised to see my hair go so quickly, but they see bald heads every day – they barely even mentioned it to me! I’m quite lucky because my head is quite small and it doesn’t have any lumps or bumps so it hasn’t been too difficult to get used to. I absolutely admire everyone who goes through hair loss, not just due to chemotherapy but other conditions also. It isn’t talked about nearly enough and I’d love to chat to other people who have been through this and how they choose to look on a daily basis.

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My Princess Trust Wig

I’ve now got two wigs, one I had custom made for free, by The Little Princess Trust. Another is quite a bit shorter, and was also custom made, by the stylists at Christos in Newport Pagnell. The staff there are the friendliest people I have ever met, the perfect people for specialising in something so personal. My appointment was also two days before Christmas, so you can imagine how crazy busy the salon was, yet they still managed to make me feel comfortable and private.

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My wig from Christos

I wasn’t keen on the original colour of the wig, so I told them exactly how I wanted it and they coloured and styled it to match my wishes, and I LOVE it! They do look really natural, and most people say you wouldn’t know they were wigs, but I know and it doesn’t always feel natural to be wearing one, but at least when I do want to go out I have these options available.

My lovely friend Francesca has started her own photography business,

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photography by Francesca

and managed to convince me to have a few photos taken without my wig, as a way of documenting this period of my life, rather than ignoring it ever happening. I HATE having my photo taken and I definitely didn’t enjoy looking through them afterwards, but she is amazing at what she does. She has a fabulous set-up, lighting and camera, and brought all the cute props along. She made me feel really comfortable and literally just told me what to do for each photo, as I’m so unnatural in front of a camera this was perfect direction for me. I’ve shared a couple on here and on my Instagram after sharing this blog @oopsydaaisy so go and have a nose at her talent!

Of course chemo isn’t just going to kill the hair follicles on my head, it gets them ALL. I am literally as smooth as a baby, I shaved all my leg, arm, underarm and private lady areas (cringe) clean and it hasn’t grown back since! It’s been so dreamy. IMG_0882The strangest hair loss has been inside my nose. I didn’t even consider nose hair, it’s not something I’ve ever noticed on myself, but now my nose runs like a tap, because there isn’t any hair in there to do its filtering job or whatever its purpose is! I lost my eyelashes and eyebrows very gradually, and by about the fourth and fifth cycle they were completely gone. I think I took this worse than losing my head hair! Because now when I look in the mirror I really don’t look like myself anymore, so I’ve made more of an effort with drawing these on than I have wearing my wig. I have got tiny fuzzy growth now on my head, I’m looking forward to seeing what it comes back like. Some people say it can come back completely different to before!

Before I go, if you are thinking of donating your hair to create a wig for a little girl, or someone like me, you can do this here: http://www.littleprincesses.org.uk/donate-hair/ you DO NOT have to shave your head! As long as you have 12”/30cm, you can donate these as ponytails.

And also, as ever, please donate anything you can to https://www.justgiving.com/fundraising/daisyellis to continue helping us raise money for Teenage Cancer Trust.

“Follow” my blog, (bottom right corner) and you can receive an e-mail every time I post (if you want to). Please share my blog with as many people as possible, so I can support others and just help people to understand this process!!!

daisy x x

 

2018

The start of a new year. Despite the bad times in 2017, and I say this with determination in my heart, I’m feeling positive about 2018. Last year started with a heartbreak when I was dumped via text (tragic), just before I turned 21 and then I was diagnosed with cancer. So really,

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At the end of a busy Christmas Day

the whole year was a mess and I didn’t really catch a break. I’m starting 2018 with the thought “let’s get the first part ofthe year out of the way, then this is my year.” Because nothing has changed for me, I can have all the resolutions I like, just as much as everyone else, but they may have to wait. I went to sleep in 2017 with an aggressive cancer, and guess what, I woke up in 2018 with it still. Living in battle every day, with something that is trying to kill you from within, is exhausting. I may be smiling and I may be winning the fight, but the wounds are deep and will take so much time to heal. I’m alone with my thoughts for most of the day, and there is only so much Netflix binge you can take before even that becomes hard work.

 

One thing I am always grateful for during this, is the NHS. Although they are in crisis and are struggling in many clinical areas, I would never have even known if it wasn’t for the news. As someone who has been using the NHS nearly every day for the past 6 months, I am yet to experience any of the struggle. I appreciate that cancer patients have high priority, but if I need a blood transfusion, the blood is delivered that day, if I need platelets they arrive within hours and if I need a bed, they will always manage to find me one. The care I have received has been miraculous and I can’t thank the doctors and nurses enough. They are so underappreciated, yet still arrive on the ward for every shift with such a positive and hardworking attitude, and always work 12 hour shifts, usually staying later than expected. They are under so much pressure to deliver meds to everyone on time, monitor observations, complete the paperwork, communicate with other professionals and so much more, yet nothing is ever neglected or forgotten about. These nurses spend more time on the ward with the patients, than they do at home with their own families, and we are like a little family on there.

Since my diagnosis, I have lost people in my life. It’s so difficult to upkeep relationships with people when you are going through this. Most of the time my phone screen makes me feel sick and I heavily rely on my friends to make our relationship work, and for that I am sorry. I am sorry I can’t text like I used to and I avoid spending time with you, but it’s all too overwhelming. I find it easier to say no to seeing people, than I do to get up, have a bath, put my wig and makeup on and sit and chat for a few hours. It’s all just too tiring. Some people have been absolutely amazing, I don’t expect anything from anyone, but the people I least expected to be around have been in touch every single day. You really do see who your true friends are! Life carries on for everyone, it’s going a bit slower for me as I’m not as busy, but other people probably don’t realise they haven’t checked in for months, because time just flies, and I understand that completely. One thing which has been heart-breaking is not hearing from those you would have expected to call. Yeah we all hope the chemo works and the cancer goes, but on the days I’m wondering what if it doesn’t, I often reflect on how I’ve spent the past couple of years. If, a year ago, a little birdy was to tell me that in a year’s time I would be diagnosed

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My amazing mum and dad at my first ever OUTpatient appointment

with cancer and some of the people I was surrounded by for most of the past two years, who ‘loved’ me and included me in their family, would not give a flying fudge… I’d have run a mile. If there’s one life lesson I have learnt from all this, it’s surround yourself with the people who truly LOVE you and want the best for you. You should never have to change to please other people, because people out there will love you for exactly who you are. Life is too short to be anything but happy.

I’ve actually been really well this cycle, it’s quite unnerving! I had my PICC line put back in on the Thursday morning which was just a disaster from the beginning to end. They took me down for the procedure and they weren’t ready for me, so I went back to bed and waited anxiously to be called back down (and this was so much effort). When I was eventually laid on the table, it had unlucky written all over. Just to say, for anyone reading this who will go through this procedure, it’s actually FINE. I’m being dramatic about this one because it was more traumatic than it needed to be. The first time I had it done was a breeze, I was in and out of there within 20 minutes. Since the chemo has ruined my veins (obviously) it was a lot more difficult for the surgeon to find a vein and insert the line (wahhhh!!). The 3 injections of local anaesthetic did next to nothing so I could feel her poking about… all in all it took her three attempts and there was a lot of bleeding. This would never normally happen, as they would usually of alternated arms and put it in my left this time, however as I had a lymph node removed from under my left arm, they couldn’t operate on this arm! I’m not going to lie, I cried. Not massively but I cried through the nervous laughter and I made the Health Care Assistant come in and hold my hand, I wasn’t feeling very brave that morning. Once she finally got it in, the end was curved, so she had to feed a guide wire through the line to straighten it out (I felt every poke). BUUUT now it’s all done and it’s working beautifully.

I started my chemo that afternoon and also had the dreaded tube turning. Basically, in

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My chemo drugs ready to go

November, I had the terrible trauma of an NG Tube… the yellow one that goes into your nose and is pushed down your throat in to your stomach. How ANYBODY has these inserted and puts up with them I do not know. Children are amazing with them, no fuss! These people are the unsung heroes of life. I’ll do a separate blog post about this anyway, and how much I cried (again), because after they had used this tube to feed me, I had a gastrostomy tube inserted. So without going into too much detail, I now have a tube coming out of my tummy and it can be used to put my meds through and also a special liquid feed, it’s a more long term solution. It sounds really gross and unnatural but it has been a GOD SEND. I lost 10kg in weight towards the start of my chemo as I was so poorly and went about three and a half weeks without eating a single thing, so the dieticians had to intervene! So I had to have this tube turned and fiddled about with which is just cringey more than it is painful, and it went fine I was just dreading it.

So yeah, this cycle I spent 3 nights in hospital for my chemo, and I have been home ever since! Usually, I’m in hospital for about 5 days, home for 5, then in for 5 etc. and have had an infection and a blood transfusion every single cycle so far. This time around, NO temperatures, NO infections and NO transfusions! This is probably because they have removed one of my chemo drugs now which was quite a nasty one, and also I’m building

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My bestie

my strength back up now so my body is fighting back a lot quicker! My body really is a little fighter. Last cycle I did nearly die, I had sepsis and was almost moved into intensive care. One of the nights in hospital, my mum didn’t even put her pyjamas on because they didn’t know which way it was going to turn. LUCKILY, this was all down to the PICC line (well, not lucky) so once it was removed the antibiotics started working and I was so much better. I didn’t even notice the severity I just spent so much time asleep, but my poor mum had never been so frightened. Health is most definitely wealth, and there is nothing more important than that. I suppose everyone can make improvements to themselves each New Year, but I guess I just want to make other people happy this year. I want to appreciate the people I love and do more kind gestures for people I don’t know. After all, I’m hoping more than anything, for another chance at life.

daisy x x

PS: If you are feeling generous and would like to do something to support a good cause, head over to https://www.justgiving.com/fundraising/daisyellis and donate whatever you can! My amazing brother and his amazing girlfriend are running three half marathons within two weeks to raise money for Teenage Cancer Trust, who have helped us hugely. Thank you so much to everyone who has already supported and to anyone who helps us in the future!

 

 

 

Chemotherapy

The only period of my life where I have repeatedly used the phrase “I don’t want to be here anymore.” The most gruelling process I have ever experienced. Chemotherapy is clean poison and is the sole reason I have been so poorly the past few months, the cancer isn’t what is making me poorly. Nobody can prepare you for what your body goes through during chemo, it is completely different for everyone, which makes it so scary. The doctors warn you of the hair loss, the sickness, potential weight and appetite loss etc, but never did they tell me the chemo would be excreting from my toes and underneath my fingernails, or that I would be vomiting foam and bile every time my chemo was finished.

 

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After my whirlwind of diagnoses, multiple consultants and a couple of operations, my consultant had made a treatment plan for me. When I first heard the word chemotherapy, I always just thought that was one thing – literally one big supply of something that you take to try and cure cancer. But there are SO many different types of chemotherapy drugs. As my sarcoma is stage 4, she has had to prescribe a concoction of four different chemotherapy drugs. How on earth does she know which ones I need and is my body going to enjoy all four??? All rational thoughts at the time, but have you ever been in a position, in your life, where you have to read through the potential risks and side effects, knowing that one of them is death and still had to sign your name along the bottom??

 

They were going in full wham with the chemo to see what my body can tolerate. My treatment plan typically follows a flowchart of every third Monday, I have 3 days of chemotherapy as an inpatient, followed by 16 hours of fluids and then a weekly outpatient appointment for a top-up drug in between. The protocol for my sarcoma is 9 cycles of this chemotherapy – so in theory it would be roughly 27 weeks of cycles, thus 7 months of treatment and I’m free? That feels like a very long way away, but I can catch up with my life again. It will fly by! Wrong. This is ONLY the first part of my treatment – scans will be taken throughout to monitor the effectiveness and progress of the chemo, and more treatment such as radiotherapy and surgery will be determined at the end of the chemo. More treatment is inevitable because my cancer is so aggressive, they want to ensure it is completely gone and doesn’t return. There are absolutely no guarantees with chemo, it won’t definitely get rid of the cancer, and even if it somehow does, it could always come back at any point.

I’ve now completed five cycles of nine. They have stopped my weekly top-up drug, and have removed one of the four chemo drugs I was having, too. This is just the protocol for my cancer, it doesn’t necessarily reflect the effectiveness of the drugs. I have two tumours, one on the right side of my skull, and one in my right leg. I don’t really know about these as they aren’t visible and I no longer have any pains there. As the chemo goes into my PICC and through my veins, it should be just as effective at getting the tumours as it is the rest of the cancer.

 

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When I go home after having my chemo, I become ‘neutropenic’ within a few days. Chemo destroys not only the cancer cells, but also every other cell too. This means your neutrophils are abnormally low (or 0), basically the white blood cells which fight infections. For ten days after my chemo I have GCSF injections in my leg, to bring my white blood cell count back up (they are SO painful). During this time, I had noticed that surgical procedures and injection bruises were taking months to heal, because my body just couldn’t do it alone. So when I’m at home during these days I’m really vulnerable, and if I show a temperature of 37.5+ I have to go back in to hospital, as it means an infection is brewing and I can’t fight it off. This is incredibly inconvenient and happens EVERY cycle, and I have to go to an assessment unit in Leicester, wait to see a doctor, wait for my blood results, wait for some antibiotics and fluids, and then if there is a bed available, I’ll go back over to my normal ward and probably stay in for at least 5 days. Sometimes I have been home 3 hours and had to go back to Leicester with a temperature. This cycle I had to have my PICC line removed, they literally just pulled it out of my veins but I didn’t really feel anything! The line was carrying a bug and made me incredibly poorly for nearly a week, with a temperature of up to 39.8, so that was the last resort after they tried to save it with antibiotics. This will now have to be surgically reinserted again before my next cycle.

 

In terms of side effects, I have really struggled with the chemo. The first four cycles I had horrendous sickness. There became a point in each cycle I was being sick every 15 minutes, every time I ate I was sick, so I wasn’t eating for weeks on end. The doctors had prescribed four anti-sickness drugs already, but the only way I could cope with this was to sleep through it. I would be lying if I said the sickness didn’t wake me up repeatedly to vomit, but it helped me ignore the feeling. I remember during one of the earlier cycles, being on the bathroom floor, crying to a point I couldn’t catch my breath. I had just been sick for the billionth time that day, and my mum was trying to reassure me and remind me of the positives, but all I wanted to do was slip down the plughole and never return. I honestly could not imagine a time of ever feeling well again. I didn’t want to spend the foreseeable future feeling like I was dying, what kind of life is that?
Mouth sores. Ulcers. We hate them, especially when they’re covering every inch of your mouth and down your throat. Fair to say, I have been in such agony with these, that I haven’t been able to speak for days, and ended up crying my way through eating an ice-cream!! They are horrific! Because of this I would end up not eating for weeks because of the sheer pain. When you have spent that long not eating, your stomach starts to create acid, which of course has to come out, so either way, eating or not – I was still being sick. I really had the choice between vomiting what I had just eaten, or vomiting acid.

I will speak about hair loss, weight and appetite loss in another blog post, but these were all instant side effects of chemotherapy. I was deteriorating by the second, all the muscles in my legs had gone, I have spent so much time in bed that I can barely walk now. My legs wobble and give way if I even try and walk to the toilet. I am constantly examined for bed sores which luckily I haven’t yet had, and I receive a daily injection to avoid DVT. Some cycles I have had foam underneath my fingernails, I have lost the sensation in my fingertips, my nails are STRONGER and longer than EVER (weirdly), my lips and skin are incredibly dry and pigmented (so I look quite tanned), and my senses are immensely heightened to the point where the smell of someone’s dinner has me vomiting, and my taste buds have completely changed, or I can’t taste anything at all. The chemo can damage the kidneys, so I was on fluids and hydration in order to flush out the toxins.

Anaemia is so common every cycle. Chemo destroys my red blood cells, so I end up very fatigued and dizzy. This is fixed with a blood transfusion every time, I am SO grateful to anybody out there who has given blood, it is such an important thing to do and is honestly lifesaving. Not everyone is eligible to give blood, but if you are this is something you should consider making your new year’s resolution!! I also tend to have platelet transfusions when those levels are low. My periods did stop as soon as my chemo started and I lost all my body hair (yay) and still feel as smooth as a baby – little perks! I am actually considered menopausal now and receive hormone tablets to stop the horrendous night sweats I’ve been having, where I end up changing my pyjamas and bed sheets three times every night.

So all in all I have 2 weeks of sleeping and feeling extremely poorly, and a couple of days of feeling well before my next cycle. My mum and dad take it in turns to sleepover at the hospital with me, as there is a spare bed in each room so you don’t have to be there alone. They have been an absolute God send, and have been caring for me 24/7. Without them, I wouldn’t really be able to do anything. There will be so many things I haven’t mentioned, because I suffer with ‘chemo brain’ which is essentially short term memory loss due to the chemo, but all I know is that whilst this so called drug is supposed to be saving my life, it is making me horrifically poorly in between. Let’s hope my body doesn’t let me down, and that chemotherapy is effective in fighting my cancer! I’m just happy to be home for christmas and spend some time being well with my family, my favourite time of year!!

daisy x x

Preparation For Treatment

Firstly, I forgot to mention a really big part of my diagnosis in my previous blog post. Doh! Be prepared for this to happen again, because back-dating is so hard I should have definitely started these months ago! This blog post is essentially now just of a mish-mash of surgeries I had in the couple of weeks between diagnosis and treatment, but that’s how life went.
Monday 21st September
Anyway, I forgot to mention in my previous post, that I had a lymph node removed and a biopsy of bone marrow taken from my spine. This further helps them determine which cancer it could be. The lymph node was under my left arm, and I had no idea it was enlarged until it showed up to be 4x its normal size on a CT Scan, (which I had vomited and ever-so gracefully passed out just before – all at the mere sight of a cannula

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Pre-Op Glamour Gown

going into my arm. Note to self: to never look at the needle again). I was really lucky in terms of the procedure, as the lymph was detected on a Friday and by the following Monday they had fully removed it. There’s always a risk that they can’t remove it/can only remove it partially due to blood vessels being in the way. It was all done under a General Anaesthetic (I was asleep and totally unaware, but I will talk about my bizarre love of GA’s at another point) which apparently is unusual for an adult patient when they are having bone marrow taken, this is usually done using gas and air… so NO THANK YOU. Something I have learnt about being a patient in a hospital, is that you have the power to be completely honest with doctors and nurses, because it is all essentially free-choice, and as an ‘adult’ you can actually refuse medications, procedures etc. In my opinion I am quite brave and willing to have anything done as I’m trustworthy of professionals and I have therefore rarely refused anything, if it’s going to make me better why would I say no? But there have been times I have had adjustments made because I simply know how to avoid traumatising myself. Quick recovery, ate my fish fingers (hospital food – now gross) and went home! Amazing, cancer is so easy I’m sailing through…

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Gourmet Hospital Food

This had already become such a journey for my family and I, that we were doing one thing and then found ourselves sat asking ‘what next?’ as if we were totally unbothered by what was happening. At this point, we had only been on this path for a couple of weeks, and lots of information was still yet to sink in for us, me in particularly.

Tuesday 5th September
My next minor surgery. As I was going to become a long-term inpatient, they like you to have all of your medications and fluids, especially chemotherapy given through a PICC line. I still don’t know what that stands for, but it’s basically a tube which is inserted into your arm, through a vein, and fed into your chest (cringe for squeamish people like me). This means that when treatment is given it goes intravenously (IV) straight into the veins and all the way around the body, without having to constantly reinsert a cannula (AMAZING.)

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PICC Line

This was done under a local anaesthetic, so I was awake but the area was numbed, and hidden to avoid any more risk of me passing out or being sick (this is quite easily achieved). It was crazy to be able to watch what they were doing inside my body via an x-ray machine, which they used to locate where the PICC line was sitting. Very easily gone wrong if they insert the line into either my heart, or my lungs it could be fatal, so I was definitely watching through the gaps in my fingers.

 

Friday 8th September
Eight days ago, my consultant looked my family and I in the eye, and delivered the devastating news that I had stage 4 cancer. I did not bat an eyelid, I didn’t blink a tear, I simply said ‘Ok, what does that mean for me?’ a question of course he could not answer so early on. I have an incredibly ‘surely not’ attitude in life, so I find it unbelievably difficult to digest a lot of negativity, because I like to continue to believe that nothing is ever ‘that’ bad it just seems a lot worse. Well that is because I was so clueless about life with cancer. I was still feeling so positive, because besides back ache, I felt so well. I didn’t feel like I was poorly enough to have cancer, so I guess I was in denial for some time and just felt grateful to be feeling well.

So far taking everything in my stride, there was one morning which really managed to make my stomach flip and my heart break. All I have ever wanted in life is my own family, especially babies, lots of them! I am THE broodiest person and just absolutely adore kids. Hence why I am halfway through training to be a primary school teacher, because I just feel so passionately about children having the best start in life and they bring so much innocent happiness into such a dark world. I literally played with my dollies until I was about eleven years old, dreaming of my future of becoming a mum for real. I have always felt like I was put on this earth to become a mum.

However, it turns out that someone had different plans for me. My chemotherapy is going to be so aggressive in order to treat my cancer, that it has a 90% chance of causing infertility. When the consultant explained this, it felt like she didn’t even believe the 10% possibility, she seemed certain that I will never have children of my own. I looked over to my mum for reassurance, that my consultant doesn’t know me well enough to make those decisions about my future. My mum felt the pain as hard as I, because she knew how important this was for me. We both broke down in tears and I suddenly realised, that not only am I now being told to fight for my life, but actually now my future has been taken from me anyway. My world was falling apart at every hurdle, is this really what cancer is? A total life ruiner?

After a night of random sobs and plenty of mum advice, I was finally delivered better news. Freezing my eggs wasn’t an option, as the process takes up to six weeks and we didn’t have a spare six weeks before chemotherapy started. More cries !! BUT, there is a ‘new’ option to preserve fertility, which in the UK is only offered at John Radcliffe Hospital in Oxford.

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The insides of my tummy

They offer a procedure where they completely remove one ovary, then they store (God knows where) and freeze it for up to about 50 years. They test it and ensure that it isn’t cancerous, if it is they won’t keep it as there’s no way they could give it back to you. If in the future I want to have children, and struggle to conceive naturally, I can now have strips of my ovary reinserted, to produce eggs! They basically slice the ovary into around 80 strips, and give them to you as and when you might need them. The success rate from babies being born healthily from this procedure is quite successful so far, so hopefully there is hope. So on the 7th, off I went in an ambulance from Leicester to Oxford (slightly dramatic) with my huge bag of medications and snuggly pyjamas. The journey was awful but when I finally arrived I was wheeled into my own side room (phew)… and I was forgotten about for nearly four hours, fabulous. The care was awful but luckily my mum and dad arrived shortly after and kept me company.

Very early the next morning I was taken for my procedure. We had a brief chat with Dr Lane, an amazing consultant who explained what was going to happen, and talked us through the process. Then I was wheeled through theatre for my GA (fave moment). I LOVE that feeling where you are being put to sleep, it’s so relaxing. I’m just going to fill this space with waffle, because I don’t actually know what happened during the procedure, but the surgeon said it went really well and my ovary looked healthy!! I was wheeled back to my side room (slightly feeling like a Queen from the amount of bed wheeling and lack of walking) and the pain was about 11/10.

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The War Wounds

You really don’t realise how much you use your stomach muscles until you’re trying to turn over in bed or someone makes you laugh. All I wanted to do was get back to the cosy safety of my room on Ward 27 in Leicester, but Oxford hadn’t arranged an ambulance to take me back. There was no way I was staying there another night, so we dosed me up on medication and padded out my dad’s car with a zillion pillows, and he drove us all back. On a Friday. In rush hour. It was Hell. But at least now I have had MRI scans, X-rays, Bone scans and a Heart Scan, all my surgeries are out the way and I am ready for my treatment to start!

daisy x x

 

My Happy Little Life … Interrupted

I had always believed that only a particular kind of person can have cancer. I don’t know at all what this ‘kind’ of person is, but I just knew it wasn’t ever going to be me. My grandad’s have both beat cancer without too intensive treatment, but besides this, it has never been a part of my life. I assumed there were reasons for cancer, maybe it’s hereditary or maybe people’s lifestyles could result in cancer. I never thought it would happen to me, someone so ordinary.  How r a n d o m.

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days before diagnosis

Welcome to my oopsydaisy! I was pretty hesitant about starting a blog as I’m such a private person, I wasn’t really sure if I wanted anyone to know what was happening in my life. Most people don’t really understand and have absolutely no idea what I am coping with and experiencing every day, but how would they if I never tell them? On my blog I will talk about my diagnosis, chemotherapy and its gruelling side effects, hair and eyelash loss, life with cancer and so much more.
Life has changed completely for me, nothing is like it used to be. I have always been a lover of life and so appreciative of everything I have in life, and never saw anything like this coming. I had been continually complaining of back pain, I’ve never had problems with my back so I started by ignoring it hoping it would get better, I had a sports massage (ouch) which didn’t help in the slightest. I couldn’t even lift the kettle without an excruciating pain in my back.

Eventually I went to the doctors and he sent me for an MRI within days of seeing him. At the time I thought that was quite dramatic and that I probably just needed physio. The most traumatic part of this MRI is that I had to go and have my hair extensions removed prior, as they are metal at the root and an MRI scanner is basically a giant magnet. The MRI was taken of the bottom of my spine, and then I left the hospital and went to work.

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sent home on morphine

Results of an MRI usually take a couple of weeks. That same week I had a gazillion blood tests (I’m surprised I didn’t run out of blood), and this is when I first realised there was a possibility it could be cancer. I had not even considered this, but I was reading my bloods form and ‘melanoma’ along with a few others was on the list. I then had the long-awaited call back from my doctor. I hadn’t been as patient as it sounds, I had been ringing him nearly every day to see if he had the results, I was terrified there was something he wasn’t telling me. He was concerned about a curve at the bottom of my spine, so he arranged an appointment with a Spine Specialist at Leicester Royal Infirmary.

Mum, dad and I went up to LRI to meet the Doctor. He had me do some typical stretches and exercises for my spine, and expressed that the curvature was a few degrees shorter than what was classed as an issue. The only thing that concerned him was some shading along my spine, but it wasn’t his area of expertise so he wasn’t totally sure what it indicated. He requested I had a full spinal MRI and referred my case over to another Doctor, who was a haematologist.

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Hev and I on the train to LRI

The next week, Heather and I went all the way to Leicester, she spent two hours in the waiting room whilst I was in the MRI machine… they had said it would take 45 minutes. That made me think something was wrong. If you haven’t had an MRI before, you basically lay on a flat, solid board, in my case they had to cage my head up to keep it still. You’re then wheeled backwards into a tube that is no wider than what felt like a lilo, and your nose is almost touching the roof of it, both ends are open though and they give you a button in case you need to talk to them. A worst nightmare for a claustrophobic (luckily not me!) and you have to stay completely still. They usually play music for you through ear defenders, but in my case they wouldn’t fit under the box my head was stuck in, so I had the pleasure of hearing every movement of the machine, which basically sounded like roadworks and drilling.

The next morning (which is worrying in itself) the specialist rang. Weirdly it was my mum’s day off and I had last minute decided not to go to work, so we were both at home together. He asked to speak to my mum first, and I sat and watched her smiles turn to shock and she was trying not to cry, but failing very badly. She hung up the phone and explained that he was really concerned it was cancer, not a spine problem. We both started to cry and then made the decision to ring my dad. The specialist had arranged an appointment with the haematologist (blood specialist) at LRI for the next day.

That next day, I was diagnosed with the dreaded C word. The doctors weren’t sure straight away which type of cancer I had, isn’t that weird? They knew it was definitely cancer because they could see it on all my scans, but they didn’t know what type??? They first thought it was lymphoma, but the consultants eventually confirmed that the cancer was in my soft tissue… like what… I didn’t even know I had soft tissue. This is where it gets complicated. My type of cancer is Sarcoma (soft tissue), and the rare sub-type of Sarcoma is called “alveolar rhabdomyosarcoma.” This type of cancer is so rare; it only makes up 1% of all cancers… how did they even find it?! I was admitted to Ward 27 at LRI and totally unprepared for the next few months.

daisy x x