Appetite shmappetite

 

Oohhhhhhhhh food. How we love you, how you keep us alive. But is there really any enjoyment of eating when you lose your taste buds, everything you smell makes you vomit, your mouth is in agony with ulcers and the textures are enough to send you hurling? Meh. I’ll just avoid eating, just for a day. Which becomes a week, turning into two weeks and before you know it, you haven’t eaten or drank in almost a month. But you aren’t hungry, so you can get away with it, right? Well yeah, until the nurses put you on the scales and you’ve lost 10kg in weight which results in your chemo being postponed and all your medical doses being lowered. Even as an adult, I was only allowed half a dose of paracetamol when I lost too much weight as they prescribe it based on your height and weight rather than your age, so as you can imagine this didn’t even touch the sides!

8863DDDB-4B3B-4DCE-9248-2E31E95A4752So that’s the first hurdle with poor appetite – weight loss, but there are solutions. All of which I hated, there was nothing I wanted to do to gain the weight – as much as I already hated being slim, I didn’t care enough to do anything about it at this point. Your will power goes out the window, you’re already on intense chemotherapy for cancer, why would I care if I’ve now lost weight? I wasn’t seeing any of my friends at this point so I didn’t care what people thought of me and the nurses are hardly going to judge my appearance are they? This was a really tough time for my mum and I, we are extremely close and get on so well, but this just came straight in between us. My mum was stressing how I will die if I stop eating, and I was stressing how difficult it was to eat, I was aware of how dangerous it was but I couldn’t do anything to stop it! I couldn’t bare the thought of food and there was no WAY I was forcing anything down, 3 times a day just to please everyone else. There came a point where if I wasn’t eating, I was vomiting stomach acid and if I was eating I would just throw it straight up.

At this point I was referred to a dietitian, she was extremely lovely and during her visits I wanted to do everything I could to please her. But the minute she left I would just give up on the ideas of eating. To make it less over facing, the nurses make up milkshakes and add extra ice cream (purely for calorie intake), but even that was not what I fancied. I would tell my mum exactly what I think I could eat at that moment, and she would walk in to town and find me it – we were desperate! But by the time I went to eat it, I had completely gone off the idea and would just refuse to try any of it. Looking back now it seems ridiculous that I couldn’t just pick up a piece of bread and eat it, but it really was one of the most difficult points during treatment. Next they will try and feed you “fortisips” which are basically small drinks full of calories and nutrition. But they were SO thick and tasted disgusting. So that was also a no. I had even gone completely off the idea of drinking water, my tummy was so empty that it would just make me feel sick to drink too much. This wasn’t too much of a problem, as they can hook up hydration IV if you aren’t having enough fluids.F26CD5C7-F1CE-4211-B554-054C7EB68800

I think during a few months of mucositis and soreness of the mouth I literally lived on slushies (bearing in mind this was in winter – they were almost impossible to source). So one of the nurses would buy a bulk of ice lollies and crush them in the kitchen blender for me about 11 times a day, what a hero!! No calories but it was a start. I did some research for how else I could get food inside me without eating or drinking it – if they could hook me up to fluids, surely they could just put food in the same way? Not quite, but almost! I found information on TPN, which is basically a bag of nutrition which can be fed through my PICC line. I can’t remember why, but this wasn’t even considered when I asked the nurses, it’s something they prefer not to do as it is mainly used for other conditions, not mine. I was gutted, this seemed like the easiest way out and they weren’t trying to help me. Why can’t they understand how difficult it is to just EAT?! Besides the sore mouth, I do think the majority of this problem was psychological but that didn’t make it any easier.

Another week or so went by and they decided now something really needed to be done. There was talk of a Gastrostomy PEG being inserted into my tummy, which would allow me to hook up a bag of special nutrition overnight or during the day and it would just feed directly into my stomach. When this was suggested I couldn’t request it fast enough, I didn’t care what it took I was signing up! Unfortunately, before they can take you for surgery to insert this tube, they have to make sure your stomach can tolerate the feeds which will be given. To do this, they first insert an NG feeding tube up your nose, going down the back of your throat and into your tummy.  You are awake for this and they literally just feed it through and you have to keep swallowing the tube as they do so. Honestly, I’m not going to sugar coat this because it was the worst experience I’ve ever had (ok exaggeration – but it was weird and it was extremely unpleasant). The nurses sat my bed upright, I took a deep breath and CRIED the whole time they were poking it in. It didn’t hurt at all, not even slightly uncomfortable, it was just a sensation I really didn’t cope well with. I bet some people really enjoy it (probably not enjoy, but maybe they don’t mind it so much). You probably have seen lots of children with an NG tube in their nose to help with nutrition.9DB5E269-AF88-434C-AD32-A1C1370E7199

I didn’t get on well with this tube at all, I don’t particularly have a negative outlook on them, but they just weren’t the right solution for me. I remember one day my oncologist came to visit me in hospital and I was telling her about the experience of having it put in, and even the sheer conversation of events had me throwing up, so much so that the tube actually came back up my throat and out my mouth. It sounds horrific but it’s something that happens quite easily as there’s nothing holding it down in your stomach. I then of course had to have it re-inserted – so my advice if you do have one is try to avoid the sickness! This time I just took deep breaths and was incredibly relaxed the whole time they were putting my new tube in, it was a lot less stressful, but when you’re feeling poorly this is the last thing you want. I didn’t like being constantly aware of the tube, every time I breathed it nudged against my nostril, and every time I swallowed it moved about my throat – so this didn’t really help the eating situation.

Luckily for me I got on really well with the nutritional feeds through the NG tube, my stomach tolerated them and I was feeling better. My oncologist had me down on the emergency surgery list and I was taking down the next morning for insertion of the gastrostomy PEG. Yay! Not something I ever imagined I would be excited about, but that’s just how different life is now. I had a general anaesthetic for this (fave) and it only took an hour or so I think. It was relatively straightforward anyway. When I recovered from the anaesthetic I remember having a really sore throat from where the camera had been down my throat, and my stomach was really sore where they had cut through the muscle (well..) so that hurt every time I moved! 64C61D28-6925-42F2-85B4-754CB75D1238

Then the exciting stuff happens! The nurses keep an eye on your wound, which was really neat and they show you how to look after the tube. Basically, it’s kind of like when you get your ears pierced, you have to turn it regularly to make sure the skin doesn’t heal over the tube. (My life is so glamorous I honestly don’t know how I’m so single). They then showed me how to use the clamp and the bungs to open and access the tube, all very simple stuff once you know how. They do a quick test where they drawback using a syringe to make sure the stomach fluid is the right colour, then you judge it against a pH scale to know it’s in the right place! You also get your own feeding machine from Nutricia. You connect your bag of feed up to this pump, choose all your settings and connect it up to your tube! In hospital it was always on a drip stand, and at home I had a smaller pump I could carry around with me if I needed to go anywhere whilst it was on. I started with one feed overnight which was 1000 calories (amazing) and then I would have smaller, 300 calorie top up feeds during the day. So my weight went up so quickly and I felt so much better.

Nutrition really is super important during treatment, because the more you are eating, the quicker the chemo is absorbed and then flushed out of your system. However I find it SO hard when people give me eating advice. I have asked my doctors, nurses, dietitians and oncologists, and NOTHING has been fully proven within diets to cause or cure cancer. NOTHING. So any advice regarding food is all something that may have helped someone, but it is not medically or scientifically proven. If it was, doctors would be giving me this advice. I appreciate that everyone can do things to their diet and their bodies to help in this situation, but the only advice my oncologist gave me was to EAT. It was a bonus if I was eating at all, regardless of what it was. And I needed the calories!

 

Still here!

I’m still here, despite the blog going quiet!! I have just been so busy with life and my new treatment and wanted to wait until I had enough news to share to do an update on here. I also try to avoid using my blog as a way to rant – so I definitely have to be in the right frame of mind to sit and write a post, else it very quickly becomes a negative place to be.I’ve also been hesitant to post anything because my self-esteem is currently minus zero and I’m feeling quite lost. I’ve had to make the decision not to return to Uni in September because I’m just not well enough – this isn’t me giving up, but I’ve been advised to prioritise my health and not plan too far ahead. So at the moment I’ve had to put that on hold.

So I finished my main chemo in February, and had positive scan results in March. I then ended up having an unplanned break for nine weeks whilst we waited to meet the spine surgeon. I have been advised not to have any surgery on my spine at the moment, as it requires another break from treatment and is usually a four-month recovery. This isn’t too much of a problem as I’m not in any pain at the moment with my back, or having any obvious problems – it still feels quite weak and I’m really cautious with it, other than that there is no urgency to operate. Plus, I’m not really in any position to be taking another break from treatment for now! There is still much confusion about the cancer itself, and the spine surgeon threw a whole new bag of worries into the mix, when he refused to operate on a patient who only has six months left to live… EH??!! I’ve always known my prognosis is pretty shite but never have I been given a time frame of when I’m going to die. This obviously left us with so many questions for my oncologist.

37AC86D1-5287-4B45-9AFC-F78FB5C7F781My new chemo routine is oral Cyclophosphamide chemo every day at home, and then an IV Vinorelbine chemo every Monday for three weeks on one week off, then repeat. I didn’t even manage to complete my first cycle! It’s been a very complicated couple of months on this protocol, as it’s a medical trial and I have switched over consultants after mine had gone on to maternity leave. Every week before chemo you have to have a blood test, to check that certain levels are good enough to tolerate chemo. Basically, your healthy cells come back up first and the cancer cells slowly lag behind, so they have to catch your body at the right time to give you chemo, to kill off the cells without making you too poorly. Now that we have our new consultant, she has switched things up slightly and adjusted the doses to prevent me from becoming too poorly, so that I am able to tolerate more chemo. It has so far made me feel quite poorly on the day of having the IV so I tend to just go home and crash until the Tuesday. It’s given me a really sore mouth every week and I’ve been very tired and achy, but luckily no sickness!!7F078DB5-190F-4302-B635-BCCC2FC5FB99

As if my life isn’t dramatic enough, I’m sent for an ‘URGENT’ appointment at Eye Casualty in Northampton General. I received my two yearly letter in the post reminding me to have another routine eye test, which usually I ignore. But funnily enough I actually wanted new glasses as I was bored of the frames I have at the moment. My prescription is pretty tiny; I couldn’t tell you what my sight problems are – it’s either short or long sighted but I can’t even remember which? So I went for my appointment (which was free, cancer perks) and then ended up paying nearly £200 for two new pairs of glasses, as my prescription had slightly changed!! The only concern was that something at the back of my eyes wasn’t as it should be – the optician couldn’t be exact on what was wrong, but wanted a specialist to check for any possible problems, as my optic nerves didn’t look normal. I have never known anything about eyes, I don’t remember having them looked at more than a few times in my life and can’t remember anything I learnt about them in school (or taking an interest). So I didn’t even know what the optician meant, but also didn’t want to ask too much, therefore I have googled this so you don’t have to!

Optic nerve: The optic nerve connects the eye to the brain. The optic nerve carries the impulses formed by the retina, the nerve layer that lines the back of the eye and senses light and creates impulses. These impulses are dispatched through the optic nerve to the brain, which interprets them as images.”

To be honest it was all very dramatic, I so much as ‘popped in’ for my eye test on the way for a night away with my friends, so never expected to then be delivering a letter to my GP for an urgent referral. After much confusion about what I was supposed to do, my GP rang me to say I should have gone straight there, instead of waiting for an appointment later on in the week. Little did I know, as I was driving up the M1 to meet my friends! I went to Northampton General and had my eyes looked at – another *cancer perk* I didn’t have to wait for 3 hours like everyone else, I was seen within 30 minutes! I really do have an eye phobia; I can’t bear to have my eyes touched or look too closely at anybody else’s, I don’t know HOW people wear contact lenses, they are the real heroes. I had lots of tests on my eyes, including having a teeny little needle poking my eyeballs !!!!!!!!!! This is the first time since August I have actually winced and tried to run away from the nurse. So far I have handled everything absolutely fine, needles, scans, NG Tubes, but poking my EYES is just TOO FAR surely?! Anyway, long story short the doctor at the hospital sent me for an urgent MRI which I had the next day on my brain. The results all came back normal and he was no longer concerned – although we haven’t actually received the radiographer report, his secretary just rang me to say everything’s ok. So now I just need to wear my glasses most of the time to stop the hallucinations and flashing I had been having the week before – probably due to chemo.73A8E105-FB03-4653-B2A2-84F34E31B03E

I have also just had my latest MRI scan on my spine to check up on the cancer. My consultant was really pleased, she was sure there was nothing new to be seen on the scans which is reassuring, and she even thinks that most places are clear now, other than my spine! There will always be lots of damage to my spine, including 3 vertebrae collapses but hopefully this won’t cause too many problems long term. I have even lost about 2.5 inches in height now. So now it’s continuing on my maintenance chemo for 12 months and hoping they continue to keep the cancer stable.

I have just got home from 2 nights in hospital – something I haven’t done for months! On Wednesday 11th July I started to get really bad pains in my tummy, I couldn’t stand up straight and moving about was absolute agony. I’ve got a Gastrostomy PEG in my stomach at the moment, which is basically a tube going into my tummy which I was having feeds through – this was inserted in November last year when I was too poorly to eat and lost nearly 10kg in weight! I would connect it up to a machine overnight and a bag of nutrition would just slowly go through. It sounds really gross, but actually it’s always been fine and has been an absolute life saver (literally) so I’ve never minded having it and have always been grateful it was ever an option, especially when eating anything or swallowing tablets made me so sick! I think my next blog post will be about my experience with appetite and the PEG as a few people have asked if it was a good choice during treatment and I honestly cannot recommend it enough (for those who need it obvs)! Anyway, it was internal agony around the area of my tube so I had to get it seen to. My GP surgery were amazing this day, they close at lunchtime and were shut all afternoon, but the nurse still called me in to have a look at my tummy. She gave it a clean, but there wasn’t much to see so she put a small dressing on it and gave me a course of antibiotics.

17F18F1F-C300-4C38-92BF-2DBEE6C87734I went home to bed and still couldn’t move – if anything the pain was getting worse and worse. We rang Ward 27 at Leicester and asked their advice, my temperature was slightly up but nothing too dangerous so we said we’d keep an eye on me and then see. My temp was then creeping up slowly and I couldn’t sleep with the pain, so we decided to go up when it got to about midnight! I got to the assessment unit and they did all my observations (blood pressure, temperature, stats etc) and made me a bed up in a side room. I slept on and off whilst I waited to be seen by a doctor, who didn’t come round until about 7am! This was a good thing though, as it meant for once I wasn’t a priority – meaning I wasn’t dangerously poorly, something we aren’t used to! She prodded and poked my tummy and took a swab, and decided to prescribe IV antibiotics and I was moved across to Ward 27 by about 8am.

My consultant was actually on the ward at the time which was so lucky. She made some phone calls and spoke to the surgeon who was on call for that day. Amazingly it was the same surgeon who had inserted my PEG in the first place, and he did a really good job. Apparently he remembered me from November and said he would be more than happy to remove the tube that afternoon!!! Having this removed was always part of the plan, as I haven’t really used it in about six weeksnow, so it needed to come out, we just didn’t know when they would schedule it in. So I was nil by mouth all day (no food or drink) which by the way was torture, when the girl in the bed opposite was watching Come Dine With Me for the majority of the day, and went down for surgery at 1pm, it was all going so smoothly I couldn’t believe it. Of course I was still in agony at this point so I couldn’t wait for my general anaesthetic to knock me out!! I still love that feeling when they inject the anaesthetic and you go all dizzy and fall off to sleep… weird. I was knocked out at 1.15pm and I was back round again by 2pm so it was a really quick surgery.

I had absolutely NO pain at all when I woke up, it was literally a miracle. I had a really sore throat from where they had put the camera down my throat, and also a sore lip where they had cut it from putting the breathing tube in my mouth, but besides from that I was so chuffed the pain had gone – and the tube was out! It has served me well and I’m sure if I am ever in the position to need one again, I will be back under anaesthetic, but for now my appetite is good enough for me to start gaining weight again on my own. There’s a tiny dressing to cover what currently looks like a bullet wound (soz) and it should heal within the next week or so. I was kept in for the night again to make sure the wound didn’t leak etc and it was fine overnight, so by the next afternoon they let me go home – which I was desperate to do!

X x daisy

Sarcoma Awareness Week

This week is Sarcoma Awareness Week, so I thought I’d put together a little post about what I’m dealing with and how sarcoma has become the biggest part of my life in the last year. The point of my blog is not only to help people who are going through similar battles, but also make Sarcoma more known, even if it’s just to one person. In the unlikely event that I am the reason someone has checked that lump and found an early diagnosis of sarcoma, my work here will be done! It’s not just about those people, it’s also about the people who won’t get sarcoma, the readers who one day will cross paths with someone in pain, and will remember my story when suggesting that they visit their GP, just in case. Although I have shared a lot about my own experience with cancer, I have not often mentioned sarcoma itself, so I should probably take the time to do that – since there’s a whole week dedicated to it?!

Worryingly, but also understandably, the first thing people say in response to ‘I have Sarcoma’ is ‘what is that?’ I get this. Before I was diagnosed, my family and I had never even heard the word before and I remember skipping over this one in a list of other potential cancers whilst they were doing further tests to confidently diagnose which one I have. From never hearing the word, to now seeing it every day, I often wonder how this was possible, how did I go 21 years not having a clue about something that is happening every day in our world? Sarcoma UK is the only charity in the UK to focus on all types of sarcoma, and their aim is to have put £3million into research by 2020. This is nothing when it comes to cancer, this is how difficult it is to raise money for something so unfamiliar. Compare this with the amazing £24million Soccer Aid has raised for UNICEF in the last ten years, why? Because there is much more awareness to their cause and people have helped to donate to something that they know is important and changing lives of children who need it most. Sarcoma UK are still trying to find effective treatments for more than fifty different types of sarcoma, but the worrying aspect of that is that most sarcoma patients do not have ten years to wait! The prognosis is shocking, and they aim to improve this only by 10% in the next 2 years.

Picture1.pngThe reason I am using my voice to spread awareness for Sarcoma, is because had I have seen my doctor even a week later, it would have been a very different story. I am of the highest grading and staging of cancer and the doctors think I have only had it for as long as I had the symptoms, which was about one month, and I acted incredibly fast and was luckily listened to and diagnosed within two weeks, the speed it should take to diagnose cancer. The most important thing I have learnt is to listen to your body, you know when something is not right, it may seem minimal and luckily most of the time it is, but do you really want to avoid ‘bothering your GP’ at the risk of your own life? Be persistent, sarcoma is often misdiagnosed as there are many bone and muscle-related conditions, I know we often trust our doctors more than our gut, but not all doctors have wide knowledge of sarcomas, I was lucky enough that my GP had seen a sarcoma case 15 years ago and recognised the signs.

There are over 100 sub-types of sarcoma, and there is a 4 in a million chance of getting mine; alveolar rhabdomyosarcoma, and just because it’s a childhood cancer does not mean you can’t get it when you are 21, 45 or 68 – nobody ever plans on being one of those 4 people, but unfortunately, somebody has to be. So what about the symptoms? Well in the early stages which are more favourable for survival, there aren’t usually any symptoms. Then as the cancer starts to grow, depending on where it is there may become a lump or pain and soreness if it begins pressing on a muscle or a nerve. Other symptoms could include:

– Uncomfortable swelling
– Limited mobility
– Skin lesions
– Abdominal pain
– Vomiting
– Constipation

So nothing too abnormal or concerning, which is what delays diagnosis in Sarcoma patients. Nearly everybody I have met with sarcoma had been dismissed by their doctors at first, as it was ‘just’ aches and pains in their body. One of the most stressful truths about sarcoma, is that whether or not you are able to treat it, it is more than likely to return. This is so likely, that my consultant often says ‘when it comes back..’ rather than ‘if it comes back.’ Therefore, vital research is NEEDED to find new drugs and ways of treating a relapse. I was confident that if I manage to beat it this time round, surely we can do the same again when it comes back, and I’ll be ok? Apparently not, it is highly unlikely my body will respond to the same chemotherapy drugs more than once, so the doctors would have to try something different – this is where the worry begins that there isn’t enough research to grant access to unlimited types of drugs!

Next Sunday, 15th July I am hosting a Big Picnic event in aid of Sarcoma UK. This is something they do every year for Sarcoma Awareness Week and hopefully we can raise even a small amount of money to contribute towards their research. If you’d like to come please ask me about the details ASAP but if not, don’t worry I have set up a Just Giving page where you can donate here – and I promise however tiny your donation, I personally am so incredibly grateful that it may help to save my life or somebody in the same situation.

I made it even easier! If you can’t be bothered to get your card or log in online, you can text ‘SCMA96’ and your amount (e.g ‘SCMA96 £5’) to 70070 and it adds to my fundraising page.

If you want to know more about how cancer happens, this video is really good: https://www.youtube.com/watch?v=BmFEoCFDi-w

X x daisy

 

Scan Results

IT IS MY BIRTHDAYYYY MONTH!!! I LOVE birthdays, and after everything I have been

Picture1

Night out with friends

through these last few months, I can’t WAIT to have some fun and do something a bit more normal. I’m feeling so well at the moment, I’ve been off of treatment for four weeks and getting stronger by the day. Anyone who follows me on Instagram (@oopsydaaisy) or snapchat (dasyelis) will see that I have been enjoying myself lately and spending time doing more ‘normal’ things.

But although I am feeling better, I have been reminded recently, that I am not invincible. None of us are. I really struggle to do the most basic things and I get really tired if I’m on my feet for more than 10 minutes. Whilst I am receiving the best care and all the medical interventions possible, if my body doesn’t respond to what it’s receiving, there’s not much else that can be done. It’s incredibly heartening to see so many people on the same ward as me complete their treatment and receive the ‘all clear.’ But whilst we celebrate for these people, there have also been people I have met who have since lost their battle, as their bodies have just stopped responding to chemotherapy. This was a painful reminder of how fortunate I have been to have a body which has fought so strongly against such an aggressive disease. I haven’t done anything differently to those who have lost their battle, it doesn’t make them weak, nor does it make me ‘strong’ it is simply down to how your body responds, as well as what type of cancer you have etc.

Without getting depressing, I’m going to get real for a moment! I have spent endless nights lying in bed, googling my chances, trying to ask the internet if I’m going to die or how I’m going to feel tomorrow morning etc. Basically a million questions that google cannot answer. I knew I wouldn’t find the answers but I would scroll for hours and hours finding myself 20 pages deep into a recent study that was naff all to do with my cancer. My prognosis isn’t good, I’ve always known that but I’ve never really spoken about it because I like to keep positive, and make sure everyone is positive with me. But if you googled my exact condition, the outcome is nat good. I try not to believe too much of it, because we’ve all googled our symptoms and diagnosed ourselves with cancer so I know the internet is probably the worst place to seek out answers. But it is SO frustrating not knowing what your outcome is and if you are going to be the lucky statistic or the common statistic. It was already a one in a million chance that I was ever going to get this cancer, so why can’t I defy the odds of beating this thing? For Rhabdomyosarcoma (RMS) I sit in the high-risk because it’s spread around the body, and my chances of making it to 5 years are a drab 26%. But I can’t help but ignore this, nobody knows what’s going to happen to me, or to anyone! I could walk out the door tomorrow and be hit by a bus, I cannot dwell on the fact I might not live forever like I had always planned. It really has taught me to live in the moment and not think too far ahead, I appreciate every single day I have and that in itself is something that makes me happy every day. Don’t get me wrong the small things do still matter, and everyone’s problems are significant at the time, no matter how small, but when looking at the bigger picture I can’t help but hope everyone is happy and lives a life they love, because life is too short to be unhappy.

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CT Scanner

It’s a strange thing, this cancer journey. I show up for my chemo, I deal with the side effects, recover and repeat. But at no point have I been aware of what is actually happening in my own body. After finishing my ninth cycle in February, I then had two scans three weeks later. These will tell my consultant whether or not I am getting better and if the chemo has done its job. I first had a CT scan of my chest, spine and pelvis. The spine was where most of the cancer is, so my consultant wanted to see if the cancer had reduced in this area, and then used this to determine what might be happening in the rest of my body. I then had an MRI on the whole of my spine, to show different details through the imaging of what was going on in my spine. I was a bit concerned that she wasn’t going to scan me from head to toe (seeing as that’s where the cancer is), but she was confident that whatever the chemo has done to the cancer in my spine, it will have also done everywhere else. You have to trust these people; they are unbelievably clever. I was really lucky to actually have my appointment for the results the day after my MRI scan, so I didn’t have enough time to panic and get anxious about the outcome.

But with my leg pain getting worse over the last couple of weeks, I couldn’t help but lay

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MRI Scanner

in bed thinking it felt like my leg was riddled with cancer. I don’t even know what that feels like, because I was riddled before and had no idea, but these pains were identical to the ones I had before I was diagnosed. I was convinced that one week without chemo had caused the cancer to wildly spread out of control. So by the time we were on our way up to Leicester for my appointment, I had convinced myself that it was going to be bad news. I just knew that it was still going to be a long road, and I would be miles away from the all clear I have been hoping for. To be fair, my family and I had already been told that its highly likely I will receive further treatment, and they probably won’t ever use the term ‘all clear’ as they will never be that sure it has all gone.

Anyway, we went to a different building to meet with my consultant, and we didn’t have to wait for very long. She came and called my name, and lead us down a long corridor to her office, which we had never even been in before as she would usually visit me in my bed on the ward. She asked me how I was and I mentioned the leg pains and that I had a bit of an achy back, but apart from that I was doing okay. Straightaway, she told us she was pleased with my scans and had seen a significant reduction in the cancer. I’m so glad she came straight out with it, I didn’t expect it and had built this moment up so much, that it was almost an anti-climax! My mum started crying with relief and my dad and I both asked what this even meant, because although she was pleased and smiling, she never said it was all gone and she definitely hadn’t used the ‘all-clear.’

After a gazillion questions were answered, the consultant gave us some information leaflets about the next treatment I will be having. So, first up is surgery. The cancer was4.png actually holding my spine together, so after it had been removed by the chemo my spine has collapsed in several places. I don’t know too much about this surgery as I’m still waiting for my appointment with the spine surgeon, who will tell me more, but apparently they inject ‘cement’ into the gaps between the bones to hold it back up. It sounds horrible, but to make things worse it’s done under local anaesthetic so I will be AWAKE. (EUGHHHHHH). But I will feed back how it goes after it has happened! How bad can it be, I’ve already been through the shit of it now haven’t I?

After the surgery, I will start a different type of chemo. This time it’s two drugs instead of four – one will be oral and taken daily, the other will be a weekly injection in hospital. My consultant hasn’t said how long I will receive this treatment, but she is starting it for a minimum of six months, but can be up to a year. This is basically to get rid of anything that is still lingering and to try and keep it at bay if it was to come back in the next few months. I’m super happy with this outcome, I know I’m still not out of the woods and still have a long way to go, but it reassures me to still be receiving treatment and regular scans.

She doesn’t think my hair or eyebrows will grow back for the next year or so whilst I’m on this new chemo, so that’s a bit gutting. But I have recently ordered a new wig so hopefully that will make up for it! Now that I have more time feeling well, I have started to work on a couple of little collaborations. I won’t share what they are just yet because there’s still lots to be confirmed! But I may end up sharing these with a few VLOGS soon, so lookout for a YouTube channel. I will also be returning to work (from home) and taking appointments for beauty treatments in May, so this is super exciting, being able to catch up with actual PEOPLE and getting back into a routine. On the 20th April, there is a charity night to raise money for teenage cancer trust. This night is in aid of the walk my mum’s colleagues are partaking in, and we have sold nearly 200 tickets! If you aren’t coming but would like to contribute to their funds, I will link the page at the end for your donations. This year we are already planning a ‘Girls Day’ in summer, and a Sarcoma Ball which I’m hoping lots of people will attend and enjoy an evening raising money to research into Sarcoma and change these statistics!

So in short, *most* of the cancer has gone, I will be having surgery to fix my collapsed spine and I am now starting another six months of chemo which is hopefully less intense, meaning I won’t be staying in hospital, just going for the day. I will still experience some side effects, such as sickness and tiredness etc but they shouldn’t be as bad. This really is the best news we could have received at this point of the journey, I still have a long way to go, but I am ready to take it head on and continue the fight.

The link for donations is here – I know so many of you have already helped us reach nearly £6,000 on JustGiving.com/daisyellis so thank you.

daisy x x

Thoughts from my Mum

I couldn’t have got through any of this journey, without you mum.  

They say “if you’re gonna get yourself cancer, then try not to make it a rare one.” This wasn’t the case with Daisy. Daisy decided to not only get such a rare form we had never heard of, but we couldn’t spell it either!! It came completely out of nowhere, and in truth she may as well have gone and bought a lottery ticket, as the odds of winning are greater than getting Alveolar Rhabdomyosarcoma.

It’s a cliché but it’s true to say that when someone delivers you bad news, you don’t actually hear much more from that point on. However, I do remember hearing the questions “are you okay?” and “is there anything you would like to ask?”. Of course I’m NOT okay and YES there are a zillion things I need to ask, but not right now, because the delivery of those words “your daughter has cancer” had just changed my life completely…

Having politely ended the call, I turn to Daisy and we both burst into tears. My beautiful girl, externally full of life and the best health she has ever been in. But internally, riddled with a horrible disease, uncertain of which one. How can they be so sure it’s cancer, if they don’t even know which one? My next thought quickly turns to Jonathan. This wasn’t the news we were expecting… at worst a slipped disk and months of physioIMG_1476

The rest of the day was surreal, as I felt like I was still me but transported into someone else’s life. We were to arrive in Leicester the following morning and meet with a haematology consultant. What started out as ‘orthopaedic’ quickly changed to ‘oncology’ (cancer). As a clinician in the NHS myself, I had some understanding of the former but the latter I knew nothing about! We arrived onto the ward with the anticipation that the consultant would give us it straight, tell us the plan and then we would set about fixing it. Surrounded by the word cancer everywhere, and patients coming and going, evidently battling with this horrid disease, it soon became scary and a frightening place to be. A lovely kind man (soon to become a very familiar face) took us into a room and immediately I sensed it was quite serious. By now, Daisy was immobile and in a lot of pain. Sitting there in a daze, he briefly discussed the various scans and tests Daisy had already undergone, and what this was likely to mean. I remember him mentioning lymphoma and leukaemia of which I was vaguely familiar with, and a third I barely recollect the name of… very rare but could be a possibility. Indeed, this was the one Daisy was to have and I really wish I had paid more attention to this one, as we were dealing with the unknown. The next morning, Daisy was to have a biopsy as the consultant palpated a very large lymph node under her left arm (also seen on the scan) that we weren’t even aware of. This was going to be the key to determining the type of cancer.

Back in the early days, I truly believe shock deterred the tears. I was messaging family and friends saying she’d not got any common symptoms so surely it won’t be cancer. We remained upbeat and positive, but by the time the results were in, Daisy was admitted to hospital with chronic back and leg pains. Was it not enough that she was dealing with horrific pain, but now had got herself cancer to contend with? The results weren’t good, it was an extremely rare sarcoma which had already spread into the tissues and around various sites in her body. Basically it had reached her head, her toe and places in between. As there appeared to be no definitive primary source, it was a case of possibly get lucky this time, but it will be highly likely to return. There was so much information to take in. There was talk of treatment being given for a minimum of six months, given all the cycles began on time if Daisy was well enough. We would be spending 3-5 days every third week as an inpatient with many more likely admissions for complications of the chemo… that we were to prove right!

So Daisy has got herself a rare cancer and I was truly struggling to embrace the word. How do I say those words ‘my daughter has cancer’? So I decided to I would refer to the cancer as Daisy’s +1. I equated it to a very annoying boyfriend that was really no good for her (especially as by now was causing so much pain) and she needed to get rid of it. In the meantime, she would have to continue having dates with him in Leicester, until she meets a new +1 which is the chemo. We were just hoping that the annoying +1 would get fed up of travelling and eventually succumb to the battle it was to have with the chemo. I even described the chemo as some sort of PACMAN going around her body, eating up all her cells, good and bad. I began to realise that Daisy wasn’t keen on these analogies, and just wanted me to say the ‘c’ word. If she wasn’t afraid of it, then why should I be? Since when did I miss the great big halo around her head? How strong and defiant she was.IMG_1482

From that point on, I used the word ‘cancer’ like it was trending on social media. I wasn’t frightened, and why should I be? The odds, to be fair, weren’t great but why should we not defy the odds and get lucky? As time went on it soon became obvious that Jonathan and I dealt with this very differently. Jonathan, like Daisy, wanted to know everything, regardless of how bad it was, whereas I didn’t want to know anything at all. Eventually it had to be agreed that I would be out of the room when their questions were asked. I actually wondered if we would survive as a couple? We had celebrated our 25th wedding anniversary the previous summer, and we were truly happy and blessed in our lives. Suddenly this journey we were travelling was giving its all and I was becoming angry and resentful if he so much as breathed the same air, let alone when he dragged a chair instead of lifting it up! How could this be? I thought things like this made you closer and stronger, not rip you apart at the first opportunity? But then how were we to know. We’d never had so much as a practice run, let alone be tested in this way… like I said, we were blessed with good lives and always, always grateful for what we have. In truth, we still are despite all the pain cancer has brought on our family and friends. Not many people are fortunate enough to go through life and find out what people truly think of them. Whilst we don’t recommend cancer, it has become bittersweet, as you do find out how important you are to others, and how much other people’s support empowers us as a family to keep going. What will always stay with me, is the emotional involvement of people close to us, seeing how painful it was for them, to see what we were going through. I began to dislike the word ‘sorry’ as people were so apologetic that my daughter has cancer, but it wasn’t even their fault, why were they so sorry? Daisy has never been the victim, she has never questioned ‘why me’ and as a family we understand that why not Daisy? Nobody deserves cancer.

Little were we prepared for the side effects ahead, not only did Daisy tick most of the chemotherapy side effects but also created some of her own, how many pyjamas can one possibly get through per night due to menopausal sweats at the age of 21 – luckily there’s a pill for that! One for all of them in fact. All I can say, is we kept Primarni in business for the best part of six months. We were told to look out for raised temperatures whilst we were out of hospital, anything above 37.7c meant we needed to inform the ward and trek up to Leicester, as it was only downhill from there. Daisy always seemed to spike a temperature at eleven or twelve o’clock at night, which was great for the traffic on the motorway and the assessment ward as there were no queues, but not so great for my stress levels. I never knew I could pack for a night away in under ten minutes, this definitely taught me to always have a bag ready.

Whilst this was always really stressful, we soon learnt the protocol of observations and drugs to control these symptoms, where Daisy would usually respond well and we would return home within a few days. However, what we weren’t prepared for was an unknown infection and failure to respond to three different types of antibiotics. Usually it was fixed within 48 hours. This became my lowest point of the journey so far, a visit from a nurse who warned we may be transferred to intensive care if they cannot stabilise Daisy made me realise how vulnerable she was. I was so frightened, I didn’t even change into my pyjamas that night, I sat up all night terrified she wouldn’t make it through the night. Seeing the fear on doctors’ faces was telling me things I didn’t want to know. I will always remember hearing that it’s not usually the cancer that destroys a person, it’s something else they contract along the way.

IMG_1535From the minute of diagnosis, I didn’t return to work. This was an easy decision to make, we were in this together and I did what any mum would do, I vowed to be by her side through it all. The only time she wishes I wasn’t by her side, is every evening when she is due her dreaded GCSF injection. This is something I have had to administer into Daisy’s legs, to boost her white blood cells, and it never gets easier. I have left her covered in bruises, but at least it’s working its magic on her blood. Furthermore, I didn’t quite realise what I’d signed up for, we had endless sleepovers in hospital (almost four months straight) which became difficult for me leaving Jonathan and Jacob behind. I felt like I had left them to fend for themselves, which was new territory. I had constant offers from friends and family to help with the housework etc, but I was so proud that I wanted to try and balance it all, as a distraction and escapism. I’m thinking of sending Daisy a bill, for all my online retail therapy during those long months in hospital when there was not much else I could do. It wasn’t all doom and gloom, just when we thought we wouldn’t get home for Christmas, our spirits were lifted after an unexpected visit from Jamie Vardy and LCFC. Although we aren’t massive football fans, their presence on the ward really lifted morale. (And we did get home for Christmas!)IMG_1451

You might think that watching your husband shave your daughters head is the hardest part. This is something no parent should have to do for their child, but Daisy made such light of the situation that it really passed us by without any true significance. And actually it’s normal now, I can’t imagine Daisy with hair, it’s such a perfect little head. The two of us spend so much time together, which is never a problem. The only thing we have fallen out about was Daisy’s nutrition during chemo, which gradually deteriorated and it soon became apparent that unless Daisy picked up her weight, her body would not be able to tolerate the chemo. There were so many reasons she couldn’t eat, however I immersed myself in books that were telling me nutrition was not only helpful in keeping the treatment on track, but also in eradicating the poison from her body quicker. Why couldn’t she see this? It was after she had dropped 10kg, that she began to look quite unwell and it was heart-breaking to see her wasting away. This was when I realised how poorly she was becoming.

Daisy has been given the task of standing up to cancer, and that’s exactly what she is doing. She leads and we follow. Truly inspirational, courageous and dignified beyond belief. We are so proud of her and Jacob who has also been so strong and supportive with all that has been thrown at us. Life is extremely precious, and we hope and pray the next coming month delivers the news we are so desperate to hear.

To raise money for Teenage Cancer Trust, my work colleagues and I are embarking on a 25k walk from London to Brighton. Please spare any change as a donation to help us along: Donate here.