As you can tell, this blog is all about matters of the heart…
My Parents raised me to believe there are two types of people in this world: Those who eat to live, and those who live to eat. My family has always firmly fitted into the latter category with our Decembers full of Christmas food planning and with us regularly looking for new things to try.
I have to admit that I am completely obsessed with food and eating. There’s always something out there to try or imagine eating, and anyone who has spend more than bout ten minutes will say it’s my favourite topic to discuss. Actually they would say that I never stop banging on about it. I spend my days thinking about how to cook recipes, or where I can get the food I can’t cook myself.
Food is bit of a difficult subject when it comes to cancer treatment. It is so essential to keeping strength (and spirits) up but most regimes don’t exactly encourage feasting. Weight loss is one of the most common side effects, and with the wigs available these days one of the most visual.
Loss of appetite, sickness and taste changes has been and remained one of my biggest ongoing concerns throughout this journey. When I was told I could lose my taste buds I was honestly appalled. Food actually cheers me up, so being told I may not be able to taste it for several months seemed unnecessary and cruel! Thankfully I didn’t experience too many taste changes during my first treatment, I only went off chocolate. Seeing as it was Christmas, my siblings were certainly glad as they got all I was given!
Transplant was a bit of a different matter. Mainly because it somehow took me from being a teen foodie to totally obsessed. 4 weeks of either being unable to eat or having only food from ‘the muck truck’ (as a friend used to say) has changed me. Those long weeks of mouth sores and sickness mean I now want loads of food, great food, nearly all the time. I definitely drove my parents to almost insanity watching cookery shows in isolation (still do) because they couldn’t possibly see how discussing food, looking at menu’s, planning meals or just daydreaming could be at all comforting to someone so restricted at that time in eating. Each to their own I guess, and I am certainly one out on my own! There is nothing worse than feeling physically hungry but being physically unable to swallow even water…
I wouldn’t say that I have experienced terrible side effects taste wise….though my mum would definitely say no good has come of my new love for sausagey picnic products! I just don’t know what it is, I’ve always liked a cocktail sausage or sausage roll, but generally being a lover of quite exotic and fresh food would only ever really eat them at you know, picnics or kids parties….my love for scotch eggs is also quite something else!
Let me shout it from the rooftops though- food is vital to getting better. It will keep your strength up, a healthy weight makes you less susceptible to infections. If nothing else, we all have certain foods that just make a bad day better. For me that’s a takeaway Bao from my favourite gourmet takeaway, for some that’s a pot noodle. Each to their own.
If you’re currently on treatment, and want to take an aspect of your care into you own hands, eat yourself better. That’s not going ‘raw’ and eating only linseeds and blueberries by the way, but stuffing yourself silly with a variety of great food to help you thrive through treatment. It’s hard but by golly, I’ve seen the difference it makes. Calories vs. Cancer. Flapjacks are recommended, always.
Here’s to being a foodie, being ‘food happy’ and treating yourself. I’m certainly food happy right now after a feast from the ever delicious, mastercheffy Hokkei. A delivery from them to the hospital always brightens up what may have been a long and frustrating day (as today was!) and I’m quite sure squid had never entered here previous to me ordering from them! Mmmm salt and pepper squid…..
So that’s a slight introduction to me and food…..there will be much more to come. The next few blogs are all going to be centred on my stomach. After all, I am on a rather hefty dose of steroids!
Next time be ready to hear about the nemesis of all inpatient foodies….The hospital food trolley!
*dun dun DUUUUN*
(As always, I’d love to hear your recommendations to do with food, of any sort! I want restaurants to visit, if you know of any particular good ready meals, unusual foods that should be on a foodie bucket lists….just if you have something to say about food, tell me! Also, if you are a producer or owner of any foodie business, please know I’m always up for a visit*hint hint*)
Seeing as today has double significance to me, I thought I really should break my bloggy silence and get back to it, give you all an update on how I am, and what I hope this day can bring to general awareness of blood cancers.
I actually wrote a piece similar to this on this day last year, and then used the day to appeal for people to join the stem cell registries. Even though I have so much more of a connection with the bone marrow transplants world mow, I want to focus this on something else. Awareness.
Let’s be completely honest, how many of you know the symptoms of blood cancer? I know I certainly didn’t before diagnosis, I just had a good bodily awareness thankfully. With someone diagnosed with a blood cancer every 20 minutes in the UK alone (that’s around Thirty THOUSAND people EVERY YEAR)
30,000 seems like quite a lot to me really. A mind bogglingly large amount of people for a country the size of Britain.
So let’s be aware, yes? That way we can protect ourselves and those we love, so that if awfully enough a blood cancer does occur, we have the skill set to spot and flag it up- giving that person the best chance of recovery.
Read these and remember them as symptoms. Of course if you do have one of these, the chances are it’s really not cancer.
Be aware of:
-Bruising easily -Persistent Fatigue
-Weight Loss -Fevers
-Repeated Infections -Unexplained Bleeding
Now that I’ve said my piece, I can tell you how I am! In my opinion, I am doing well, despite some difficulties. As I said above, today is exactly 4 months since my transplant, AND my last day taking ciclosporin, the main immunosuppressive drug. This means that my transplant has fully grafted and that my (brand new) immune system can begin strengthening itself again! So a very exciting day!
I have had some problems, repeated dalliances with the CMV virus (an underlying virus, similar to the one that causes glandular fever and only causes problems when on immunosuppressive drugs) and some lung issues that have meant I’ve needed a bronchoscopy, plus a slightly swollen face…BUT I haven’t had any Graft versus Host Disease SO these are minor issues really. They’ve just meant I’ve spent more time in hospital than anticipated and hoped for.
My muscle strength has been improving, and I can now walk fair distances, which is reassuring. I’m planning for this summer and beyond now I’m beginning to feel a lot better…including plenty of restaurant visits (food is the topic of the next blog!)
Some of my closer friends and family will already know about Pie Day. Chances are if you’re a recent liker or follower of RemissionPossible you won’t have heard of it. Get ready to embrace a whole new family tradition this Christmas. Pie Day.
Now you’re listening. Everyone loves a new family tradition don’t they, whether it be the unspoken rule of not going out over the Christmas week, religiously watching the Queen’s speech or making everyone at dinner table eat a sprout. Christmas truly is a time for making the family do funny, nostalgic and ridiculous things in the name of making more family memories.
This December, save the date for the 27th of December (day after Boxing Day) because we want to see you spend it eating pie.
So why Pie Day, and why I am I making all of you do it?
It started off as a personal family tradition, when my Dad decided if we make use of Turkey Leftovers, we should make use of gravy, sprout, roast potato and other leftovers. After the cold meat day of the 26th, he made a pie of left over Christmas dinner ‘stuff’ and served it up to us. He jokingly named it the pie of all pies, and for that day to be the day of pie making, perhaps never expecting us to go on about it again.
Until the following year, when in December, we watched a Jamie Oliver programme where he was making pie, and I decided we should make it at some point. Seeing as we had pie of the 27th the year before, it was made on that day and the Day after Boxing Day has become Pie Day in my house ever since. My family, the six of us love Pie Day. It is one of our favourite family traditions and I joking have encouraged friends to partake in it, until Christmas 2013 which changed things.
Last Christmas (I gave you my heart) and Pie Day became something new, something beyond just my family. I knew I was going to be in hospital all over the Christmas period and my church and extended family wanted to do something to help, or just do something to let me know they were thinking of me, without having to have the awful ‘So you have cancer…’ talk with me. Pie Day was this outlet.
After my mum text everyone in her phonebook, and Cathy my minister spoke to the congregation we had around 50 people take part in Pie day last year. Most of them sent pictures of their pies, I had a letter off’ve one lady who had typed and specially printed the letter so it had pictures… Some of my best friends got together and had a pie making session with some of them delivered to my house, to put in the freezer so my family could eat without having to cook properly. I had tons of pictures sent to me of friends eating pie- even I it was just the humble mice pie or a big celebrity chef inspired number.
This year I want Pie Day to be bigger and better.
In years gone by, Pie Day was a fun family tradition, which dragged out the proper Christmas festivities out a bit and was massive fun. Last year, Pie Day became something else. It became a known event sure, but it also became a mechanism to show someone you’re thinking of them, and to be a time to think about whose family members or friends you can’t be with this festive season, for any reason.
I would love more people to get involved this year.
Pie Day can be what works for you. It could be you delivering a pie to someone lonely or in hospital. It could be you sitting down with a mince pie and emailing friends and colleagues who need to hear a friendly message at what can be a very hard time of year. It could be a time to invite relatives not close enough to come for Christmas Dinner over and spend time with them. It could be, as it was originally for us, a fun gimmicky tradition to use leftovers. It could be your excuse to buy that giant pork pie. It could be whatever you make it to be.
It may seem like a strange thing, a charityish blogger, urging you all to eat pie the day-after-boxing-day, without asking for donations. That is not what I want. I want it to be a time where you sit back and be with or think of those you love, and just be. Not much of Christmas is like that, not really.
Obviously, I’ll be celebrating Pie Day, just as much as any other festive day, and in much more style than last year. Last Pie Day I was recovering from having my Hickman line in, I still had my chest drain in and I was just a general medical mess. I’m not entirely sue whether I even ate any pie!
I just hope you all decide to join me in eating pie this 27th December. I want to hear your recipes, see your pictures and just spread a bit of love on social media. I know there are some of your reading this who were bitterly disappointed that they for one reason of another were unable to sign up to be a Stem Cell donor. Maybe you could spread the #RemissionPossible love through your pie making skills!
My mum is desperate to have a Pie Day cookbook made, so maybe with your support this year, it could become a possibility for Pie Day 2015.
Thank you for all the recent support, I really hope loads of you get involved!
Keep Smiling (and pie planning)
P.S. As always, I want to see you signing up to the register! If and when you have, we want to see you doing your swabs/spits on social media to help spread the word. Send us a pic using #swabspitselfie to @remissionpos or post on our Facebook page (www.facebook.com/remissionpossible2014)
If you forgot (as many do) to take a #swabspitselfie take a picture of yourself with a piece of paper saying that you’ve signed up to become a lifesaver, and why. Unleash that bragging power!
P.P.S you could be a lifesaver.
To sign up…
If you’re 16-30 years old sign up at www.anthonynolan.org
If you’re 18-55 sig up at http://www.deletebloodcancer.org.uk
Since telling you all of my news on the 17th, STUFF has happened.
Lots of stuff.
I have had my first round of chemotherapy, and though there were a few hiccups along the way I am now home and feeling relatively ok. If I am honest the fact it is my younger sister’s 16th birthday tomorrow is a more daunting prospect than side effects at the moment. I am sat on my sofa, and just waiting for my neutrophils to drop, and make me ‘susceptible to infection’ and for the rest of my blood counts to lower- potentially making me need a blood or platelet transfusion. It’s all right though.
As you may have heard, my sister Holly unfortunately isn’t a match. It was a massive blow to our family of course because it really would have been the easy option. It would have been hard, with the process of Holly donating being tense due to her diabetes and just generally a tense time due to the importance of the donation. If Holly had been the donor it would simplified things. We wouldn’t have to worry about the respect of there not being a match. We wouldn’t have had to worry whether despite all our effort, I have to endure further chemo, just to wait for a donor. It would be easier.
Obviously this isn’t an option now, and complicates things slightly. Anyway, I’ve never rally don things the easy way, otherwise I wouldn’t have done science Alevels or done the course in Imperial College last year, or applying to uni without AS levels or even having cancer firs time round. Doing thing the hard way just gives us the opportunity to achieve more I think.
The progress on donors has been quite frankly incredible. We have had 519 clicks to Delete Blood Cancer and Anthony Nolan (!) and from what we have heard so far, we have around 300 people who have signed up to the registries SO FAR. (This is just from my rubbish social media counting…)
This IS just the start. Some local companies have decided to run donor recruitment days, place the registry details on their office intranet and some places have printed the details on their payslips.
I regularly wish I was a more interactive writer, better comedy and portraying the sometimes incredible strangeness in my life but at this moment, however showing the seriousness of is key. I need a bone marrow transplant. I will need to have one to live. Right now, my best option is a generous, selfless thinking member of society that is also miraculously a HLA match for my blood. A match from an unrelated donor is coincidental, and hard to find so I need as many people as possible to sign up and maximise the chances of my finding a hero. Many of you ask about the potential for being tested specifically for me, but the thing is there are thousands of people out there as well as me looking for matches, looking for thir heroes. If you join the register, you could be one of their heroes. You could be a 12 month olds baby’s lifesaver, or a mother of three’s lifesaver, a teacher, nurse, firefighter, student or aspiring ballerina’s lifesaver. Or you could remain on the register and never be called up. Give yourself the opportunity to become that hero.
Joining the stem cell/bone marrow register is a big thing. Huge. If you donate it will involve needles, and blood. But it would also SAVE SOMEONES LIFE. I urge every one of you reading this to sign up, encourage others to sign up, or find some other way of supporting. It means the world to me, and could one day result in you saving someone’s world, perhaps mine.
Like I said, if you sign up it is an awesome, super-duper, cool, heroic and awesome thing to do. So shout about it. Scream from the rooftops, subject your Facebook friends to the news, and frenzy your followers on twitter. We want to see #RemissionPossible ALL OVER social media. We want to see your swabs, your spits, the kits and the sign up notifications. We want to see it ALL. If you feel like you’re spamming us, you’re doing it right. The first swabbing pictures are beginning to come in, and I love it!
Our Facebook is RemissionPossible (www.facebook.com/remissionpossible2014)
Our twitter is @remissionpos
As always- to sign up to be a bone marrow/stem cell donor…
If you are 16-30 years old register at www.anthonynolan.org
If you are 18-55 years old sign up at www.deletebloodcancer.org.uk
Please note RemissionPossible as your reason for signing up.
Now, if you are unable to sign up for one reason or another (a 74 year old lady was disappointed to be unable to sign up this week, amazing!) please, please don’t leave it there. In Britain we love ‘nominating’ people to do stuff, so why not try and recruit ‘Just one more’ onto the register.
Thank you for all the well wishes,
With tonight being Halloween a blog about the Teenage Cancer Trust may not seem to be as topical as you may want to be reading. Halloween is the night of tricks and treats, frights, spooks, gory make up and if you’re unlucky enough a dosing of flour and eggs.
I didn’t want to talk topically about fear, frights shock or horror because we all know tha cancer is full of that without me boring you with a blog about it. I guess most of you know or can imagine the gut wrenching awfulness that comes with a cancer diagnosis as a teen, so why draw it out. Instead this blog is about some people I love, the people who make it all ‘ok’ (as ok as it can get) These are the people who as a Halloween-o-phobe you open the door to expecting a ghoul and find a fairy princess there.
So who are these people? Well if you’ve read the top, they are the Teenage Cancer Trust, a charity that before a personal connection most people probably hadn’t heard of before this year, and a charity that deserves much more attention than they get. A charity who I just described as the Fairy Princess of a teenage cancer diagnosis.
If you have no previous connection to Teenage Cancer Trust and don’t really know who they are, or what they do, you will be blown away. By building wards for cancer patients they give the opportunity for teenage patients to be in their natural place- with other teens and young people, even when they’re having treatment. It allows them to have space, watch TV and have some of the choices you would have in your own home. It allows young people, like me to be in their own, with their own and not with the babies or the grannies.
And why do I love them? Concisely put, they made the difference between hope and defeat in the face of my own diagnosis nearly a year ago. They made the difference between being with other teens, and being with 80 year old women telling me about how you I am. They made the difference between normal conversation and well meant pity and grandchild chatting. I firmly feel that an ordinary ward has a much more pessimistic feel than any TCT ward, with big colourful sofas and random light up jukeboxes.
I love what they do so much, I love what they stand for and I love Roger Daultrey. I love the ethos that a hospital ward shouldn’t have to look like a hospital ward. I love that you can have friends to visit. I love that when they do visit you don’t have to be huddled around a hospital bed, that you can play (I tried!) pool, watch films or just chat.
The difference it makes, to be around others your own age, for them to also be bald, lugging around drip stands and have a complete understanding everything that is happening is completely priceless. I do think it is the friends from the TCT ward that I made that got me through treatment.
My diagnosis was an extremely confusing time. Having my consultant be able to say ‘let me take you to the ward, it’s where you’ll be looked after’ and even with a quick off-the-cuff visit to be able to speak to some nurses, the ward manager, and day doctor is incredibly reassuring. My mum often says that she saw a light when we got to that ward, that she thought everything would be alright after arriving there. She takes pleasure in describing the Cardiff ward, the Skypad as looking like a penthouse youth club. To be fair to my mum, that’s exactly what it looks like.
If you haven’t quite got it already, the Teenage Cancer Trust are more than just people who build wards, and they are much more than a name of a collecting tin, the name of something ‘which would never happen to me’. Teenage Cancer Trust means you are supported, so that when you’re ill on Christmas morning, there’s a nurse dance around your bed. The teenage cancer trust means that when all you want is duck pancakes, your mum can cook some in a microwave for you. The Teenage Cancer Trust means that when your brother visits you, he can watch TV with you, and it isn’t a case of ‘let’s stare at Emily for the next hour’. It meant that I have made amazing friends. I meant while I was sleeping, my mum had other mums to sit and eat breakfast with. It meant everything really. Everything and so much more because I am here to tell the world of my love for this charity. Hey deserve every penny they get because that penny will go towards providing lifesaving treatment to someone like me.
Everything they do may seem simple, grouping teens together for chemo, but it is so so much more than a room to have treatment in. A place for treatment, but also a place to try and live, when your life isn’t yours to be lived, but tucked away in a box.
I love Teenage Cancer Trust, because they are there for you wholeheartedly in a time of need that you never thought imaginable.
If you want to see some more pictures of the teenage cancer trust ward yourself, (the above are from Cardiff) or find out more about the awesome stuff they do, check out www.teenagecancertrust.org
Hope you liked this blog, enjoy the rest of this spooktacular night!
Keep smiling (and trick or treating!)🎃
6 months in Remission!
So as of Friday I was officially 6 months cancer free!
Amazing how time flies right?
This also means that RemissionPossible is now a lovely six months old!
Remission, cancer-freeness is quite simply amazing, and I really think that it is something that unless you have experienced a similar situation yourself you can’t imagine what the feeling that is associate with remission. I love the word and all that it means. I really don’t think anything makes me happier than hearing of other people’s successes and having my own success, carrying on each day.
Of course I’m not thankful for the cancer, but to be still alive, kicking and causing havoc- I am so so so grateful, and I love the position I am now in, with the opportunity to help others. Read the rest of this entry
This week we have a guest blog from my mum, Donna, and her take on what having a child with cancer means, for the whole family.
When Emily was diagnosed with cancer our world changed in an instant forever. I now view the world different. I feel empowered to make a difference and give something back to the many charities that have supported us. I have done voluntary work for over 20 years. This has given me new momentum.
As parents, many of us joke about wishing our children came with an instruction manual. Especially when they are babies. It’s a good job they don’t. I may have sent them back with fear about what laid ahead.
My mother would say its because my house is unlucky and I should move before someone else is stuck down by some disease or condition. Ironically, since moving here my children have been diagnosed with Type 1 diabetes, epilepsy, asthma, dyslexia, dyspraxia, and Cancer. But we have also been blessed to be able to add to our family. We don’t feel unlucky but the complete opposite. We are so lucky to have these children. They enrich our live beyond words.
Read the rest of this entry
This is all about what has gone on in the last week.
For ease of reading this is the contents of the blog….like a book!
1. Being in a Leukaemia & Lymphoma Research focus group
2. Delivering a gift box…and clinic
3. Being on the news!
4. Volunteering for Look Good Feel Better
5. A RemissionPossible Film
So this is once again a bit of a newsy type blog, because of all the stuff that I’ve been up to this week, and just general developments.
Read the rest of this entry
Sorry for my recent silence, I’m sure you were all incredibly disappointed to have a blog to red last week, but I have been elsewhere!
I have much to talk to you all about as a result!
First of all, the reason I didn’t blog last week was because I went to
Southampton on a university summer school, run by the oil company BG group. To put it frankly…..it was amazing!
I was doing a marine course, and though I’m not looking at doing it as a career, it was incredibly interesting and was just the most incredible opportunity t have what with some of the things we did!
I got to go on a boat which is worth over 1 MILLION pounds and sail around Southampton Water, doing scientific measurements, I got to look at plankton under a microscope….though perhaps most importantly (jokes!) was the fact we got to go Laser Quest (yay!)
Read the rest of this entry
There I am, with my second post already!
Now, from looking at the data coming to me I can see that the page on this site getting the most traffic is the Em’s Story page, and because of this the topic of today’s blog is very much getting you all to know me a bit more.
I have two videos below, the first being a vlog I made on my very first night in hospital at the teenage cancer trust and the other being from Tuesday 22nd April 2014 (yesterday). I’ve never shared the first anywhere publicly before, and me, my mum and my sister watched it for the very first time on Sunday-though I filmed it in December, I never watched it. PLEASE WATCH BOTH VIDEOS!
So watch it ⤵ (I apologise for background music)
So that was then, and this video below is me now!⤵
I just want to say a massive thank you to the angels at Look Good Feel Better , I had an amazing time at my workshop. (I will be writing a blog post specifically about it!)
Check out the amazing work they do for women with cancer here – http://www.lookgoodfeelbetter.co.uk/
Hope you all have a great week, keep smiling 😄