Is it possible to be busy to the point of mania, yet chronically bored at the same time? That’s how the past few weeks have felt to me at least.
Yes, I’ve been back in hospital again… but was discharged on Wednesday and am ready to get into the Christmas spirit!
There’s been nothing different to what we’re usually dealing with, more CMV issues and a line infection, but in true RemissionPossible style I’ve cleared the infection, saved the apheresis line and my suggestion for continuing CMV treatment appears (so far) to actually have been the best decision we could have made… Go me!
Most of the manic stress has come my need to micromanage my care and make sure all the different people who need to communicate with each other and do things actually communicate and do them. Assumptions have caused me a lot of issues… If you want something done, do it yourself is the case sometimes I feel, and have felt quite a lot recently
Adding uni deadlines and Christmas to all this certainly hasn’t helped!
Somehow, but predictably there’s been such boredom….. The longing to be out of hospital walls has been overwhelming at times. No lie, there is a new F1 doctor who didn’t want to have to see me yesterday….not for there having been issues in care but because I had literally cried on frustration, anger or sadness every time he had ever seen me! Bless him, he was terrified of having to deal with that again. That’s how it’s been though, me twiddling my thumbs, wondering when on earth my body is going to sort itself out!
But I’m out now, and ready to get all festive so I’ll tell you about the few genuinely interesting things I’ve been up to recently. The two things that I’ve been most excited to tell you about are both Bloodwise related!
The first was a bit of a while ago now….
Back in November I attended Bloodwise’s research open morning, where they showcased he current research going on in Cardiff (and gave all the ‘regulars’ a chance to catch up!)
You all know I’m a total science geek so attending a morning where numerous scientists were talking about their work and at the complete mercy of my questions was fab. The work the researchers are doing is simply mind blowing, and seeing the innovative way they were working to solve problems was inspiring for a girl aspiring to be one of them. Most know my discomfort around the word inspire, so that’s a big thing for me to say.
The morning had a very informal format where the researchers were available in the labs for you to wander between and chat to, which allowed a very different experience to usual conference type events.
My favourite thing was seeing a model that had been built of blood vessels to do investigation into endothelial cells that would reflect how CLL cells actually act in the blood – petri dishes can’t show the impact pressures and other factors have on how leukaemia cells actually behave. The main reason for using it was to see what potential treatments would stop chronic leukaemia cells entering passing through the endothelial cells into lymphatic tissues, the thing that allows the condition to worsen. The cases that result in a build up of leukemic cells in the lymph glands are generally the hardest to treat and the most aggressive.
Hearing about targeted therapy was also incredibly exciting, because it will lead to less harsh treatment, better survival and ultimately the day when we don’t see people having to endure numerous regimes before finding one that works – lab work will soon be able to guide clinicians to choose a treatment that has already been proven to work on a sample of that patient’s cells. I’ve seen people go through the anguish of treatments failing, or having resistance, so the idea of ending that is very hopeful.
I am aware I’m not explaining this very well at all, and that it probably comes across as boring but I assure you that it was fascinating!
There was a lot of talk about targeted therapies across the different researchers, with some using flow cytometry to see the abnormalities in patient blood components at diagnosis, then monitoring as they normalise, to looking a how the telomeres on the cancer’s DNA can indicate the level of treatment needed.
I’ve also been invited to spend a bit more time watching the team do their work, which I’m looking forward to.
If all that above meant nothing to you (or if it should have and I recounted it terribly!) here’s something I heard that’s a little less PhD and more personal blog and an analogy very befitting to this time of year.- Cancer being that guy at the party, the one who shows up, parties hard, drinks hard, drinks everything, then when everyone else is exhausted by him, cancer carries on, stealing every last remnant of food and drink from everyone else, until he’s the only one left going and everyone else (the cells) are passed out, done….
Paints a picture, right?
So the other things that we’ve been up to with Bloodwise is running! We held our Santa Run last Saturday and I feel it was a huge success. Though I’m still not sure on fundraising totals, we had around 115 Santa’s and elves running, all of them looking absolutely fabulous.
All sorts got involved, with a few buggies getting in on the action, and a scooter thanks to my sister. Some ran it in a breeze, others struggled…all finished and got themselves on Santa’s Good List for this year!
Big thanks to Griffithstown Harriers for helping organise, Be the Best Military Fitness for the fab warm up and The Olive Tree for selling tea/ coffee and giving us use of the room.
Everyone who ran, or donated are helping to fund the work I witnessed in the labs and are helping to cure blood cancer. The money that was raised will make a huge difference in meaning those scientists are funded in doing their work so passionately.
That’s it from me for now. I hope everyone else is beginning to feel a lot like Christmas!
Keep Smiling (and scrolling for Santa pics….)
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*)
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 week its rather a bit more of a ‘me’ blog, though it does seem such a while since I wrote that blog about results day, and I have been up to a lot since then! By the way I also hope that everyone picking up their results were happy with them!
So what have I been up to since then?
Well I spent the beginning of this week from Monday to Thursday, at a music residential run by Clic Sargent. It was held in Stonar School, a boarding school near Bath (posh right?)
Now, for lack of more words and sophisticated description …..It was AMAZING!!!
I honestly cannot describe what an awesome time I had… but for the sake of this weeks blog I will attempt to do so!
Read the rest of this entry
A change in focus. A change in priorities. A change in what matters most. Something I’ve experienced and heard so much in the past few months. Cancer really has a way of throwing everything up in the air, with it landing in different places than thrown.
As I imagine everyone reading this knows, tomorrow is A level results day, regardless of how they know. It could be a son/daughter of yours, a friend, or even you just know because of the news. For some reading this, it will be their own results day tomorrow, and they are reading this blog to distract themselves from the butterflies of (what they think will be) impending DOOM. I’ve been in that place before, last year I picked up GCSE results, and really I should be chewing my nails, waiting in dreaded anticipation. But I’m not, not quite.
Some of you won’t know that I was an AS student before I got diagnosed, and because I did have 3 full months in school (sept-Dec) last year, I did sit some exams. Nowhere near as many as I should of, only 2. So instead of getting four AS’s tomorrow, I’ll be getting two unit one exam marks. So of COURSE I am nervous for the results. I want to have done well in them. The significance just isn’t as great as before.
Just to be in the position to be getting results at all tomorrow is an achievement, no matter how much I sometimes feel of lesser significance to my classmates who’ll be getting full results sheets. I do feel like that, partially because I feel that should be me, partially down to insane jealousy, partially down to the awful feeling that I should have made it happen regardless of my diagnosis.
Thinking I should have learnt my course in hospital is ludicrous, and I know that. Feeling inadequate is ridiculous as well, but it’s something that I just can’t help. Envy is horrible, yet the most natural of all. Education wise, cancer puts you in a pickle!
At the end of it all though, I know I’m lucky. Lucky to have sat those two unit ones (against my Dr’s advice! She recommended a year’s rest). Lucky to have beaten cancer, and be able to return to school in September. Lucky that cancer swept in and messed up my AS levels, something people take at any age, rather than coming in a year earlier and messing up my GCSE’s. I am SO SO SO thankful I got diagnosed after GCSE’s. I know from experience how that has messed people up.
To say my experience hasn’t changed me would be a lie. Same girl, changed outlook. I always was a fan of school, and appreciated it, yet I would complain about it on occasion. I think I can firmly say now, that won’t be happening again at least not in my heart of hearts. Some of the most upsetting things, most offensive things to read during treatment weren’t nasty comments, or remarks about cancer were posts on social media like-
“Hate sixth form” “f**k A levels” “can’t wait to drop out of school”
Sure, they were just fly away comments, and would never hold anything against anyone who said something similar, but it was awful to read. I would be sat, in hospital, ill, thinking about what would give to be able to take a seat in the class for them. Something to think about- if that’s me, a girl who still had massive prospects, knew she would be going back to school felt that such comments were a stab in the heart, imagine what a girl who has never been able to go to school, or a girl who is no longer allowed to go to school due to oppression feels? At the end of the day I am lucky. Blessed. I will never stop saying, and being thankful.
So, the night before the big results day, a change of perspective. The camera of my mind switched focus, looking more at the right now, and my dreams as opposed to grades, figures and league tables. I now just want to get to university, though I want good grades still, I wanted to have the best grades possible before. Like I said I would have been fretting so much over results right now. Though I will be devastated to fail tomorrow, I have so many options. Exams are a means to an end.
That’s just what I want to hit home to people. Though passing is so important, not doing well isn’t the end of the world. Exactly the same as getting cancer- not the end of the world. It’s how to take to that news that matters, how you continue on. Continuing on, for if I’d known I would be picking up grades tomorrow back in January, it would have been some of the best news I could have heard!!!
So, I urge you all, enjoy tomorrow! No matter what the day brings, think ‘I did it!’ no matter what the ‘it’ is.
Good luck all, I hope you all get what you want. I REALLY hope you all get what you want. You’re all beautiful people for reading this.
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
So, hair loss. Fun topic eh?
However not fun, or exciting it is, it really is something I’ve felt the need to write about for a while now, and I’ve only recently felt totally in the right place to do so.
Hair loss, it’s something that I’ve been through, and so have countless other men women and children in their treatment of chemo, and sometimes Radiotherapy. Of course some other illnesses also see it occur.
As a scientific explanation for the seemingly baffling side effect of hair loss-
“Hair loss occurs because chemotherapy targets all rapidly dividing cells—healthy cells as well as cancer cells. Hair follicles, the structures in the skin filled with tiny blood vessels that make hair, are some of the fastest-growing cells in the body. If you’re not in cancer treatment, your hair follicles divide every 23 to 72 hours.”
The thing is, during chemotherapy, these cell don’t divide. Meaning the hair follicles haven’t got the cells required to stick the hair ‘in’. So, voila! Out it comes. Perhaps that’s a bit blunt. I do know the VERY scientific reason your hair follicle (and cancer) cells stop rapidly dividing. It’s because the cells spindle fibers are restricted. (I learnt that while dong my biology exam!)
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
I’ve had a busy week as usual this week! (yes I am aware I say that most blogs!)
It hasn’t been the MOST productive week al round ,but despite that I’ve gotten plenty done!
Personally, I’ve done a lot of stuff that was ‘normal for me pre-cancer. I’ve been to a 18th birthday party, spent all week in school AND have done a concert with my music center! yaayyyy.
I love performing with all those guys and the small concert was perfect to set me up for singing in St Davids hall in Cardiff, then with national festival (Music for youth) in Birmingham……Exciting stuff, I’ve got a few jam packed weeks coming up. My choir hasn’t been invited to preform at national festival before, so it’s a great opportunity- I’m just glad I’ll be able to preform with them in Symphony hall!
There’s no real topic to this blog, just bits and pieces but I think I’ll be doing one on hairloss, Hospital food, and probably Hickman lines soon. If you want a particular topic say, or vote to help me decide which of these is my priority….. Just give us shout!
Now onto more RemissionPossible style stuff…
What has my aimless blabbering got to do with the Italian job? Well, my latest collaboration!
I have been working with Rebecca Domino from Italy, an author and journalist who’s trying to change the way of Italian perceptions on teenage cancer. In her research for writing a book she discovered the difference in attitudes to and facilities for teens with cancer. We have discussed the difference in provisions for those like m in her country and as a result she has launched ‘Adolescenti e cancro’ (teens and cancer) to change things in her country. Our collaboration at the moment is focussing on links between RemissonPossible and Adolesceni e Cancro to try and help both projects to do well ,and to generally help teens in Italy.I am currently in the process of making two slideshow filmy things, produced in Italian and English that will talk about my story and how it has compelled me to set up this website and project.
It should be made by the end if next week so keep your eyes peeled peeps!
Possibly or most exciting news of the week is the gift box project progress!
The skincare brand Dermalogica have confirmed they will supply the giftboxes with some products from their Ultracalm range of products which they specially recommended after my request. Dermalogica say that the Ultracalm range ill be idea for skin that will be sensitive due to chemo….I am honestly so so so excited about it all. We also have donations from the beauty company Lush in the pipeline.
This means that as well as being able to request an information box, you will now be able to request a gift box!
To find out more on what a information/gift box contains look here!!
I now have two big shout outs to make…..
Number one is to Pauline (you know who you are) for the incredible number of knitted earwarmers you have made for us….We love you! Of course we love all of our
earwarmer-makers, but Pauline is awesome- She’s donated LOADS!👸
Number two is to Jade who was a very good friend during my treatment (and now!) We sent many an evening moaning about hospital food, drinking cups of tea and trying to manipulate hospital curtains to lets us talk. Well, this week she had a stem cell transplant, with her sister as a donor! I wish her a speedy recovery, and hope you all do too! She’s a top girl who really got me through my treatment!
Though it isn’t lucky in the slightest to need a stem cell transplant, Jade WAS lucky in the respect that her sister was a match.
Many people needing transplants haven’t got a family match. YOU could be that match. Sign up today at http://www.anthonynolan.org (16-30yr olds) or at http://www.deletebloodcancer.org.uk (18-55yr olds)
That’s all I’ve got to say really! in summary,
Lots of love, Keep smiling,😤 ☑☑☑