These past few days have been very strange for me, and emotionally I’m not quite sure where I am.
The 17th of April was the 1st anniversary of the first time I went into remission, and I felt like I ‘should’ be doing something with that day. Had I not relapsed we would have hugely celebrated the day, because of the significance. I’ll definitely be celebrating my ‘remissonavesary’ on New Year’s Eve, but what about that day? I’ll probably never know what to do with April 17th again.
The 17th was meant to be a day of celebration, so when it its previous significance is made null and void, what am I to do with the day. Maybe this is how divorcees see their wedding anniversaries!
Thankfully, at the moment I am well, so at least I haven’t spend these days ill. I am nearing 4 months in remission, and am almost 12 weeks post-transplant, so I have a lotto celebrate. I am eternally thankful to be regaining my health, despite my confused emotions recently. A dear friend, who I met through hospital passed away earlier in the week, so that has weighed heavily on me. So much of the time in this cancer journey I forget that getting better isn’t a guarantee, that we’re not just sick kids waiting to recover. I forget that we lose people, wonderful smart people and that remembering, that loss is so hard, on everyone involved.
So that’s the bitter of the past few days…the sweet?
RemissionPossible has been up-and-running for a YEAR!!!
I feel I have something to do in this blog, tips to share, a world to uncover, awareness to raise and a general feeling I can somehow serve this reluctant community. I’m not blowing off what I’ve said above, by continuing onto a different topic, but doing what always want to, in spreading positivity and (hopefully) some light humour.
I honestly cannot believe it has been that long! I can honestly say it doesn’t feel like that been a year, it still feels like this bright, new ‘thing’ I’m working on…. Perhaps I have a blogging duty now, my game needs to be upped. I’m no newbie any more.
I really do hope that writing these blogs and creating this platform is making some sort of difference.
Speaking of what I’m doing, and trying to make an impact doing- Our Annual Afternoon Tea is next Saturday 25th April in Llanyrafon Methodist Church in Cwmbran, starting at 2.30pm. It was a great day last year, and we still have some tickets, so if you fancy eating cake AND feeling good about it please come along! Tickets are £7.50 each and the money raised will go to Leukaemia and Lymphoma Research. If you fancy coming, you can reserve tickets through our Facebook / Twitter pages.
This is only a short blog today, I felt I wanted to say something on this date, the significance both good and bad of this week, but in writing haven’t really had any idea how to put it into words.
I hope you’re all well, Keep Smiling,
This guest blog is from Ellie Philpotts, a Cardiff Uni Student and staunch Marrow supporter
When you join university, you’re thrown into a new world. Societies are all scrambling to recruit you, usually with the lure of free food; Dominos are handing out pizza in the hopes of getting their local branch on your radar (which probably doesn’t need much persuasion); clubs compete for your attention via the cheapest Jager-Bomb, and lecturers are trying to regain their last threads of sanity reminding students to actually attend classes during those crucial first weeks. But amid this relentless craziness, one society caught my eye – and, sorry to be clichéd, but, also my heart.
Considering this is my guest blog for the amazing Remission Possible, a charity/site set up by blood cancer fighter Emily Clark, you may not be surprised by my revelation that this society was… Marrow!
Most big universities now operate a branch of Marrow, the brainchild of Anthony Nolan, Britain’s main blood cancer charity. Their primary mission is getting the public on the bone marrow register, and Marrow is the side of it that’s both run by, and generally aimed at, students. This means we host recruitment drives at uni, signing eager students (consenting, of course!) onto the bone marrow register, which means taking a simple saliva sample from them. We also arrange events such as our successful Variety Night last month, featuring an array of comedy, dance and live bands, and carolling in Cardiff city centre around Christmas, raising awareness and donations. The Marrow team was the first society I joined when I began at Cardiff University in September 2014, and although I’m also part of many more societies now, they’re definitely my favourites in that they’re the ones I’m most passionate about. So much so, this week I’ve been confirmed to have the role of their Media Coordinator, starting in September. This means I’ll be in charge of our social media, namely Twitter and Facebook updates; Public Relations and Marketing – responsibilities including getting the word out there of Cardiff Marrow, wider Anthony Nolan and actual bone marrow donation; informing of our specific events; and liaising with the public and local/national media to make our amazing cause even more well-known around the ‘Diff and beyond.
So I’ve said about how I completely don’t regret dedicating my rare free time at uni volunteering for Cardiff Marrow. But what actually attracted me into joining? No, their stall at Freshers’ Week was a rare one which didn’t boast free food – simply because they don’t need to rely on things like that. The knowledge that you’re truly helping to save lives kind of beats even the nicest slice of pizza!
In January 2011, when I was 15, I was diagnosed with blood cancer myself – Hodgkins Lymphoma to be precise. I finished chemo and steroids in May 2011, receiving most of this at Birmingham Children’s Hospital. Through Teenage Cancer Trust, I’ve met so many incredible people, many of whom have had transplants themselves. People with mine and Emily’s form of cancer, lymphoma, often need bone marrow or stem cell transplants, like Emily herself began this year, and I realised that could’ve easily been the case with my specific illness.
In 2012, a girl in my cancer group, Becky Bishop, who also had Hodgkins, died aged only 16. She’d began the transplant process herself, and greatly inspired me during my recovery. I’d say the combination of my own case; Becky’s situation and seeing so many others struggling to find donors really launched my passion of Anthony Nolan’s work.
I’m really looking forward to starting my Cardiff Marrow committee role and would love to work more with Remission Possible through this. Emily’s venture is an incredible idea and she’s doing amazingly, running this while undergoing the effects of her transplant. Emily, you’re a massive inspiration to me and many others. Keep on Remission Possible-ing and I’ll keep Marrowing 🙂
I have been asked to write this blog as a guest blogger for the latest guest blog series. I have only known Emily and her family via twitter where I can be found as @curlyman66. I usually tweet about education, politics (I believe there is such a thing as society) and random stuff that amuses me. Emily’s story is important to me as it is so very similar to that of my son Adam as can be seen below. In my normal life I teach science in a Liverpool Girls’ school and I can honestly say I have never come across two such outstanding young people as Emily and Adam, and without twitter we wouldn’t have heard of anyone with the same diagnosis to Adam.
2014 a year to remember or forget?
Last day of the Christmas term 2013 we finish early at midday. For once I could get home before my children. I decide against Christmas shopping and go straight home. Almost as I walk through the door my phone rings, “Dad.. can you pick me up from school? I’m not well, I’ve had to come out of assembly with back ache”. Thus began the chain of events that led to the single most generous act my family have ever received.
After a New Year’s Eve operation for appendicitis that straddled the years and a speculative diagnosis for a disease that would have been terminal we received a firm diagnosis on 6th January…. Burkitt’s lymphoma, a rare form of blood cancer. In some ways this was a relief, Burkitt’s is a very treatable cancer that responds well to drugs (chemotherapy). After a quick trip home, to play on the PS3 with his brothers, we transferred hospitals to Alder Hey where we met our Oncologist, James. A very reassuring man indeed. He told us that after a standard treatment plan he expected the cancer to be gone in four months.
Four months later (lots went on in that time!) a PET scan revealed that the cancer was clear!! Normal life could resume, Adam attended school again part time, sat his GCSE’s (4A*, 2A, 2B, 1C) and we planned a holiday to Scotland. Early July, after a bit of discomfort, we attended a routine appointment with James… It’s back.
Totally devastated we all face up to the reality that this is now seriously life threatening. The treatment is to send the cancer into remission again with chemotherapy. After some more rounds of chemotherapy we are told that once again Adam’s cancer is in remission, or rather partial remission, the PET scan still shows a very small amount of activity in one area. We are reassured to hear that the conditioning treatment for the stem cell donation will almost certainly finish off that last bit of disease.
We now need a donor stem cell transplant. If not from one of the immediate family, we are reliant upon somebody, somewhere, who has agreed to be a stem cell donor, being a match for Adam. The family members are each tested, and none of us is a match. We are now reliant on a total stranger.
Lots of thoughts go on, why isn’t everyone on the donor register, why wasn’t I? The initial search draws a blank in the UK, but fantastically we hear that there are three potential donors in the USA and the best match has agreed to be a donor for Adam. Let’s get this straight, a total stranger has agreed to save my son’s life… I am overwhelmed by this.
Stem cell transplant involves killing off Adam’s ability to produce his own blood cells and then giving him someone else’s that will graft into his body and do the job instead. The killing off process involves very high dose chemotherapy and also total body irradiation…..heavy stuff but necessary. The best analogy is if your computer is riddled with viruses you might wipe the hard drive clean and reinstall the operating system. In this case the analogue for the hard drive is Adam’s bone marrow which produces his blood cells.
November 13th The day of the transplant, it’s my turn to stay over with Adam this evening so I will be escorting him on his hospital transfer (we’re on hospitals; 3 and 4 now!). He’s been irradiated in one but the stem cell transplant unit is in The Royal Liverpool. I take the dog for a walk in the morning and I’m thinking through the process knowing that as I walk the donor cells are being flown across the Atlantic to save my son’s life having been harvested the day before. The whole process of how important my son’s life is both to the donor and all the doctors, staff of the NHS and indeed tax payers who are funding, this overwhelms me and I burst into tears… I got a very funny look from the dog who clearly thought he’d done something wrong (again!).
At tea time I drive to the hospital where Adam is in the Teenage cancer trust unit, by now in isolation as his entire immune system has been killed by the radiotherapy. I swap over duties with his Mum and await our transfer. We are being taken by ambulance to the Royal Liverpool. Everyone is in good spirits; the stem cells will be infused this evening. During the day they have landed at Heathrow, been checked at The Royal Free Hospital in London transferred by courier to Liverpool and then all checked again at The Royal Liverpool Hospital.
The ambulance arrives, a cheery team, and we are driven a journey that normally takes me 30min in 15min flat! Blue lights and sirens all the way, traffic getting out of our way at every junction and an escort through the Mersey tunnel! We begin to feel very special as if everyone in the city is on our side and willing Adam on to get better almost like it’s a shared project. Adam didn’t realise that the sirens he could hear were all for him.
The actual stem cell infusion is just like receiving a blood transfusion and last about 4 hours, it was in many ways the most uneventful of the many, many procedures he has undergone in the last year.
We are full of hope post-transplant, it has gone well so far with one or two minor mishaps on the way. Adam is extremely tired a lot of the time which will be the case for a while. He hopes to return to school in September back in year 12 so will have dropped a year. He’s hoping some of his friends fail exams so they have to drop back too!! We don’t yet know the final effectiveness of this treatment but are very hopeful that it will be a good result and his cancer will have gone for good.
After 100 days Adam receives another PET scan to assess the effectiveness of the treatment on the tumour. A nerve wracking 10 day wait for results during which he is hospitalised for a week with an infection. We meet the consultant in clinic and know immediately that the news is not good (oncologists should never play poker). To our immense sadness and stress the area that hadn’t completely gone is now active and growing. The stem cells have grafted but the cancer has not gone.
Adam is now in a fight for his life, we don’t know for certain of any treatments left. We hope he will be given some experimental monoclonal antibodies but there is no extensive research about their effectiveness. Our days are now taken up with appointments, infusions and radiotherapy to keep the cancer in check. Sometime soon we will know what further treatments he may have. We have taken as our inspiration two quotes from The Lord of the Rings Trilogy, one of Adam’s favourite books.
I wish it need not have happened in my time,” said Frodo. “So do I,” said Gandalf, “and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.”
“ I see in your eyes the same fear that would take the heart of me,
A day may come when the courage of men fails….. but it is not this day”
One thing though we do know for certain, without that anonymous American woman agreeing to give a cheek swab and sign on the register, Adam’s chances of life would have been very slim indeed. We will never be able to thank her enough. If all goes well one day we hope to do so in person but we will have to wait two years before contact can be made.
In the meanwhile I applaud Emily Clark and all her family and friends for the outstanding work they are doing on raising awareness of blood cancers, and stem cell transplant. The battle against this vile disease is not over and much needs to be done. So please continue to provide financial and practical support to all of the various charities in particular
Leukaemia and Lymphoma Research
The Anthony Nolan Trust
Delete Blood Cancer
(I hope you enjoyed this, and if you did, let Richard (@curlyman66) know!)
The news seems to be constantly full of the triumphs and downfalls of social media. It’s constantly being seen as storing up problems for the future and revolutionising modern life and allowing us to achieve new heights in communications, product research and trade.
You all know I am one to sing the constant praises of this 21st century phenomenon, for without those 140 characters or endless friend requests, blogging would not be a popular activity. Even if it were, without your ‘feed’ what are the chances you’d have heard of RemissionPossible at all?
Cancer is a mechanism for meeting the best and worst of the online world, both inspirational patients and others…. We all know there is a darker side to all this public posting… social media types I like to call ‘online menaces’ and the ones hereby mentioned are my biggest annoyances and bugbears.
- The Conspiracy Theorists.
For someone going through cancer, this is possibly the most insulting type of menace you can encounter. I’ve certainly felt very angry after reading comments from some of these.
These theorists are those who undermine your cancer treatment options, choices and plans, and claim ‘natural’ options are the best way to cure cancer. Now, I’m sorry if you are a personal believer in the power of walnuts, but wheatgrass diets, coffee enemas and yoga breaks do not seem a viable method for long term cure. The popular favourite ‘cure’ (not saying it isn’t, it’s just not proven) is the old faithful cannabis oil. In my mind, if you’re trying to sell someone a miracle cure, going for the illegal drugs seems wrong. Everyone knows it relaxes and reduces pain but I have reflexology once a week and that relaxes me, and reduces pain in my feet, but I would never abandon my cytotoxic poison for a foot rub.
The thing is, I have my faith rooted in proven, and research led, scientifically sound treatments. It would be incredible to think that an all-natural, vegan diet could have gotten me to a place of health, but it simply wouldn’t have happened. It is hurtful to read emails, comments saying a lifestyle switch could right me quicker than medicine, because I know that isn’t true and had I taken such measures there is no way I would be alive today. I knew what I signed up for with my medical consent form. I knew my chemotherapy could cause infertility and secondary cancers. I knew my radiotherapy could cause cataracts, lung scarring and changes in taste. I knew the transplant could leave me with organ failure and no quality of life. I also knew none of these things could happen, I could lead a normal life- and that the alternative was being 6 feet under.
2. The Trolls
These are the nastiest breed of them all, and actually the reason for writing this rather ranty blog. It has been briefly covered in the news the Nick Robinson had recently been diagnosed with cancer. Of course this is very sad for him, and unfortunate if he was one of your favourite reporters, but of little consequence
in everyday life. Apparently not to the trolls sending him abuse on twitter.
Let me get this straight. Him being no campaign in the Scottish Referendum does not make him deserving of cancer through bad karma, as some tweets implied.
I do hear of other trolling, people being told they’re attention seeking and all sorts of other unmentionable things. Come on guys, would you be brave enough to say it to that person’s face? Trolling is the ultimate cowardly bullying.
I really can’t say much on the topic of trolling someone with cancer, simply because I will get far too angry writing this. Surely having cancer is enough of a sh*t deal WITHOUT receiving ignorant abuse.
3. The Unnecessary Sharers
This is probably the only type that everyone reading will be able to understand, and have experienced. I do wonder if some people actually know that a share, comment or like has no magical powers. We’ve often seen it, a picture that claims your sharing supports the fight against cancer, or proves that you care. It makes me uncomfortable, the idea that scrolling on by these pictures insinuates that you don’t care. I most certainly don’t share them, and I don’t think anyone could argue that I don’t want to end the fight against cancer. It’s just weird.
Maybe this is strongly opinionated, ranty and boring but I hope you all have better internet habits (and experiences) than these.
Today marks 4 WHOLE WEEKS since my transplant, very nearly a whole month!
It has and hasn’t flown by, and judging by how much improvement I’ve seen in myself since transplant day, I’m beginning to think these next few months won’t be so bad after all!
For obvious reasons while the shenanigans were happening I wasn’t particularly vocal at informing you all at what was going on, simply because it was actually going on….so this is what’s happened in the past 5 and a half weeks, and what it all means!
(If I haven’t mentioned a day, it means nothing happened. That doesn’t even mean nothing blog-worthy. It means literally I did nothing….I’m slowly moving from that now!)
Day -12 – I was admitted to the Cardiff Teenage Cancer Trust unit for 2 Days of chemo…uneventful, lovely, nothing to report.
Day -10 – I transferred to Velindre hospital for Radiotherapy. The radio dept. was incredible (though a bit nippy) however the stay was made awful by nurses that couldn’t see me for an adult. I was spoken down to, ignored and was almost injected without prior telling/consent. Not good. Plus they didn’t let me eat any vegetables (?)
Day -6 – Left Velindre (yay) and entered B4 Haematology, home of the transplant. Also home to the world’s most amazing crazy group of nurses. You wouldn’t think male nurses were a small minority if you went there. They also had an amazing supply of tip tops (but the rest of the food isn’t recommended.)
Day -1 -This was supposed to be day 0 (where I had the cells) but unknown issues on the Spanish end meant that they didn’t arrive on this day! The donated cells actually have a ‘self-life’ of 72hrs…so it didn’t actually matter.
Day 0 – THE day! After poisoning, baking, and god knows what with the antibody treatment I was given my lifesaving new cells. It was a really strange day, very casual we described it as being at the time. Me and my parents sat and waited, while the transplant nurse to’d and fro’d between us and the labs, waiting for the scientists to be done with measuring the correct amount for my mass, and testing. Every time she would walk in the door, we would all perk up- “Was this THE MOMENT?”
It did seem like an eternity we’d been waiting by 4pm when they actually arrived. Looking like a slightly bloodier platelet and hung in a free flow bag were my cells. They only took half an hour to infuse, and it felt like one of those moments that was everything and yet absolutely nothing by physical comparison to the journey to that little room, those little cells. Just wow.
Day +3 My taste buds seemed to disappear on me, and though they warn you that chemo can alter them- I NEVER expect chemo to (temporarily) banish them. It was a sad moment of realisation.
Day +7 – World Cancer Day. The last blog I treated you all to due to the awful combination of writer’s block, fatigue and hospital appointments.
Day +10 – On this day my neutrophils had gone up from rock bottom zero to 0.3….the first signs of life in my new bone marrow!
Day +13 – I came home!! It really was the most amazing day.
The old film is right, “there’s no place like home” though in a disappointing cinematic moment it was a ruby red Suzuki that magic’d me home, the only slippers in the transplant game are warm and fluffy. (!)
Basically from then until now, there’s not much to report. Twice weekly visits to TCT with my ever fun CMV counts and endless tablets have made me struggle, but really I’m doing well.
Day +27- I had my first post-transplant, bone marrow biopsy, which I didn’t find too much of a big deal at all. To be completely honest the waiting around all day to have it done was worse than the actual procedure. For anyone nervous about having this procedure or a similar one, try not to worry. Just take the gas and air and it will all be fineeeee.
I don’t actually have the results back yet, but here’s a little pic of the marrow samples prepped onto their testing slides.
I hope you are all well, and that this blog was at least remotely interesting.
Today, Wednesday February the 4th is World Cancer Day. It’s a day you may know nothing about, or only know of from sharing a picture of a candle on Facebook. You may have guessed something was up from the constant news that now, instead of the 1 in 3 statistics we are accustomed to, we now have a 50% risk each of developing cancer.
For me though, it’s a little more than a ‘share this if…’ picture day, and more than just a # on twitter.
It is a day to remember and hope, a day to learn.
The announcements of increased risk for all those born after 1960 needs to mean something. We need to take this day, this world caner as a day for change and action. Allow this day to mean more than just one where you like a Facebook post.
We need to stand together, reduce personal life risk, educate ourselves on symptoms and take responsibility of our own health- so we can prevent cancer where possible, spot cancer early when it does develop and see screening save lives.
Currently 4 in 10 cancers are potentially preventable. Think of the impact a change in lifestyle could have rationally. Currently half of all cancers are diagnosed after they have spread. Think of the impact education could give to thousands of people, in cases where secondary cancers mean an ‘incurable’ diagnosis. Currently too many people are skipping routine cancer screening. Think of the impact if everyone who got a cancer screening letter in the post actually went to their appointments, as above cancers would be detected earlier and could improve prognosis.
I know these things won’t save everyone, and some people will be diagnosed after their cancer has metalized, but surely making an effort with the above can only improve things.
The knowledge applies to all ages. Recently someone two years above me in school was diagnosed with Hodgkin’s lymphoma. This means that between the pupils of three consecutive school years at my high school, 4 have had cancer by the time the oldest is 20. And that’s from my working knowledge. The risk of having cancer by 24 is around 1 in 282, which is relatively low risk, but in the statistics game this meant I was the second person in my school year diagnosed by the age of 16.
We all need to be aware. We need to unite in this fight and never let cancer have any sort of chance.
We need to support the researchers, the movers and shakers, the little fish with big ideas and those tireless campaigners funding the research. They are finding better treatments, kinder treatments and hoping for a day where all cancers can be cured, and during that treatment time you have a great quality of life.
So go, educate yourselves! Knowing will not make you any more likely to have cancer.
And in adults…
Change things up!
Today is for all those I’ve met along this journey- Chloe, Jade, Beatrice, Both Tom’s, Jacob, Yusuf, Cory, Dan, Cameron, Tina, Sonali, Ffion, Hwyel, Jordan, Libby, Beau, Elenid, Harriet, Andrew, Catrin, Louis, Alex, Dave, Amy, Rosa, and so many other people….
And especially for those we’ve lost, Pauline, Becky, Joe and a big inspiration, little Margot. There are others, inspirations and many I wish I could have met.
Hope you take something from this blog today. Its a bit emotional for me, managing my first blog since transplant and carrying what I see to be an incredibly important message.
Let’s get ready to rumble!
I am booked in as a patient, the consent forms have been signed, and the chemotherapy is up- I have officially begun Bone Marrow transplant prep!
It’s a little scary I have to admit. Though it’s obviously more daunting for me, I imagine many of you will be quite innocent to the transplant process, so I’ll try and break it down best as possible, so you get some of the things I will be talking about in the coming weeks and months!
The most important news first- I have a match!!!!
Of course I wouldn’t be stating the transplant process if they hadn’t found m a match, but the decision has been up in the air between different donors, and I didn’t find out the outcome of the decision until yesterday morning.
I am so incredibly grateful to this anonymous Spanish person, that I may never know who is doing such a big thing for me. Words can’t explain how much I feel I need to be able to thank them, because I will literally have their blood in my veins!
To start, did you know these things about transplant?
- A bone marrow transplant, unlike the transplantation of organs, doesn’t require an operation. The actual transplant itself is seen as the easiest part in fact! Receiving the cells, is an infusion much like having platelets.
- If the donor of the cells has a different blood group, the recipient’s blood group will change! My own donor is the same group as me, B positive- so my blood will stay the same group (just different genes!)
- As mentioned, my blood will be completely ‘new’ after the transplant! It will have the genetics of my donor, so a genetic comparison of a cheek swab and a blood test after transplant would come up as different people. As my consultant says, I will be a hybrid human from now on!
A bit more insight on me….
Today (Saturday 17th) is day -10 on my transplant protocol, meaning I have ten days until I have the transplant. This is made up of 2 days of chemotherapy, then 4 days of radiotherapy, then 2 days of monoclonal antibody therapy, then a rest day, then a day to start the anti-rejection/immune suppression drugs..’.Then FINALLY the transplant itself!!!
It’s going to be a bit of a long slog- once I’ve had the transplant I’ll remain in isolation for between 3-6 weeks afterwards, and I will have to semi-isolate myself from people for at least the first 100 day after the transplant. Hopefully, when I reach 6 months beyond, if I don’t show any signs of GvHD (graft versus host disease) I can have my immunisations as soon as possible, and go back to normal. Even if I’m not quite right, and am having GvHD- which is the graft battling against my own cells and causing issues, I’ll be well within the next few months.
This treatment will keep this pesky, evil cancer away for good- the rest of my life is so worth doing this for! Though I know it will be hard work, I am looking forward to getting it done, being done with side effects. The monoclonal antibody therapy is known to cause fevers and rigours, and is nicknamed ‘Shake and Bake’ so I’m looking forward to getting that behind me.
I am super thankful for all the support so far and am pretty bored (and I’m on day -10) so please send me blog post suggestions, links your own blogs, funny clips on YouTube and cake recipes (?!)
Once I reach Day 0 of transplant (the day I have the transplant) I will be doing the #100daysofhappiness challenge, to document my journey up to day +100
From the 27th I will be Welsh outside, Spanish inside…and I can’t wait! Perhaps I will discover a passion for flamenco, or suddenly be able to catch a tan, instead of remaining my ghostly speckled self…..
In my dance with the dreaded C word, strange things have happened. This journey isn’t one on which the expected happens, simply by the fact that its nature is to be unexpected. No one expects to have cancer, especially young…so it would be nice if the proceedings happened in an expected way. I don’t mean this in a ‘how-is-the-treatment-going’ and ‘is-it-working?’ kind of way.
There are some things that I have encountered in the past year on this ‘journey’ that just make me think in abbreviated terms “wtf!” Sure I expect being bald, and looking like an Argos Alien but some of these….weird!
Peoples crazy views on Chemotherapy.
What do YOU think chemo is in all honestly? Something I found really strange when I started chemo was quite how many people thought having chemo was sitting in a big machine that makes your hair fall out. It was even strange to see reactions to the fact that as opposed to their sci-fi imagining, chemo was actually IV infusions, tablets and a lot of sitting around…
I’m pretty sure the Dr Who machines that were being thought about were actually not too far from the reality of radiotherapy. Nearly the right treatment, better luck next time guys.
The even crazier side effects of Chemo.
We all know about the hair loss, tiredness and general feeling-like-crapiness but did you know about peripheral neuropathy or haemorrhagic cystitis? No? They sound scary but some chemo side effects are less harmful than plain weird. For example one drug made me go bright red….like a lobster!
The strangest side effect I ever encountered was the effect chemotherapy had on my nails. We think that each course of chemo had during my original treatment would somehow effect the composition of my nails, because as my nails grew after chemo they would have a dark stripe grow out on them. My nails don’t grow incredibly quickly so I could count how many courses I had had of chemo based on the number of nail stripes! You could basically age me, like a tree.
Raise your arm if you have nose hair. Well you do (Even if you didn’t raise your arm). Some nose hair is long prominent and demands trimming whereas for the usual Jane and John it’s secretly there. Of course as expected, nose hair falls out on chemo, just like ordinary hair. What’s unexpected is that this gives a runny nose. CONSTANTLY.
The stuff they do to make sure you are tip top (though you’re obviously not)… This horrible weird crazy, bizarre test is the one thing that I have really been horrified at during treatment. I’ve had tubes stuck in me, vomited green stuff and hallucinated on morphine but this is the one thing that I’ve had an immediate strong reaction to. The 24HR Urine Collection. Skghskfjhskjfhksjfk. It is the grossest thing ever, and if people wonder what having cancer treatment is like, I KNOW carrying around and storing your wee in bottles is NOT an answer that would be expected to be seen. Although it is highly irrational to have such strong feeling about it but, I have standards. And storing my wee in a bottle and having to cart it around is not within them.
The power of fizz.
Pepsi Max, is amazing. Not for its tooth rotting properties or ‘HOW does it have no sugar?!’ but for aiding side effects. After the pleasure of a lumbar punctures many people have agonising headaches. The popular carbonated drink as above stops those headaches or can aid in making them less severe. Magic.
This may be a silly and frivolous blog but perception is always seen as a powerful thing, and I think this blog highlights in the funny, strange examples of how a journey with cancer isn’t a pre-set plot with two ending options. It is diverse, unexpected and so different to what is seen from the outsiders eye.
I hope with my tales of stripy fingernails, carrying bodily fluids and snotty tissues haven’t put you off me for good- In fact if you’ve enjoyed reading this, please share it on social media!
Let’s be fair, I couldn’t make all this up even if I tried.
P.S. An information blog about my upcoming transplant will be published on Wednesday when I get admitted, so all you lovely readers will understand a bit more about the coming weeks!
As the hours tick down on the 31st of December social media fills up with people bidding farewell to the past year, and sharing photos. You can scroll and read how everyone’s years have been full of hard times and what they are liking forward to in the next year, or hear how this year has been amazing, incredible and their hopes that this coming year will surpass the one before, however seemingly difficult it may be.
The blog post I put up last night looked back at 2014 and my first year living with cancer, because despite all, it has been a good year. I’ve done a lot
2014 was a hard hard year. It started with me being a newly diagnosed cancer patient and it has seen me go through treatment, beat cancer, go back to school, do lots of speaking and relapse. It has also seen me do something I was planning for next year! (Keep reading)
So let’s look forward.
Here’s my hopes and dreams for 2015.
- Go into Remission/ be cancer free.
As I’ve been planning out this post, of course beating my cancer was first priority! It no longer is a hope for 2015 however, because after having a scan yesterday I found out I AM CANCER FREE!!!!!
Isn’t that just the best thing for going into the New Year? My main wish for the coming year has been accomplished before I’ve even reached that time.
So I have a new first wish.
1. Stay in Remission.
An obvious priority now that I am in remission is to stay there, and I am having the Bone Marrow transplant for that reason. Staying in remission means getting on with life, having a bright future and years of happiness to come. (And it isn’t a wish, it is a certainty, not to science but to myself)
2. Help to increase numbers on the Stem Cell Registries.
Though all of the details for my bone marrow donor haven’t been confirmed yet, I do know that there isn’t anyone on the registers that is a full match for me. I fortunately have a backup cord donor and potentially near match, but this isn’t good enough. I shouldn’t be having to settle. There needs to be more people o the registers and I am determined to help Yaser Martini and Team Margot reach the target of 4% of the UK being registered to be a donor. If the donor numbers were to increase to this level, thousands of lives could be saved in years to come.
3. Have a good year.
Not very explanatory I know, but I just want to have a good year in ways that years are normally good. I want to spend time with friends, have fun, and go to school and just enjoy living a real life. I’m so ready to be done living a half-life, tied up in red tape and unwanted responsibilities.
4. This to be a year of change.
I want to make an impact that will translate to real life, whether that be getting people to sign up (as above) or fundraising for equipment, fundraising for research, giving hope. I want 2015 to be a year that is noted for big change in the cancer community.
My biggest wish is for myself to be well, as noted^ but I have so much hope for others I know. I dream/wish/hope is that all those who I have met along this journey who have also been touched by cancer also continue to thrive, live life get better and stay better. I love the friends and connections I have made through this illness and I hold those relationships as one of the most important things I have.
This is just a quick post to hail the New Year in, by no means my best work and nowhere near my full list of hopes for this coming year. I wasn’t expecting to hear my scan results today, and I certainly wasn’t expecting the result to be so good my consultant rang me at home- so I am rather frazzled and scatter-brained. Today may have messed with a Hopes for 2015 blog, but this news….this news has given me REAL hope for 2015. There is so much I hope to achieve, this is the bare bones of it.
I hope you all have a VERY happy new year!
Keep Smiling (I’m beaming today!)
Photo blog today!
The 20th December was the 1st Anniversary of my diagnosis, something known in the crowd as a ‘Cancerversary’. I’m incredibly proud to have reached this milestone and more than slightly chuffed to look back on the year I’ve had. Though it’s been a hard hard year, it’s also been an amazing one. It’s been filled with opportunity and I’ve met so many wonderful people.
Of course I had never expected that I would have relapsed by now, and be facing another challenging year. I can’t change the circumstances however, so let’s look back on everything so far, help me gear up for transplant and get ready for going into my 2nd year since cancer arrived.
Photo that captured me on twitter the day I was diagnosed.
The very first lift picture (Awful!)
Having my first chemo.
Pie Day 2013 (my friends making pie while I was an ill inpatient.)
Shortly after I shaved my hair off⤴
I supported friends at the St David’s Day Dangle.
And after more chemo…
I finally finished it!
We had the afternoon tea where we served 120 people, my friend Natalie shaved her hair off and we raised over £2,000!
I had a PET scan……
I found out I was in Remission!
So RemissionPossible was born!
I went back to school!
I sang at National Festival in Birmingham
I was invited onto the Mayor of Newport’s Charity committee.
Gave the first gift and information boxes.
I volunteered for Look Good Feel Better- and braved ‘Hurricane Bertha’ whilst doing it.
Bucket Collecting for Leukaemia and Lymphoma Research.
I won a Beacons of Hope Award from the Lymphoma Association
And attended the bigmoose gala dinner, where I spoke on behalf of the Teenage Cancer Trust and where Jeff Smith’s £60,000 fundraising target was reached!
My mum, my sister and I MARCHED ON CANCER at the Stand up to Cancer March.
Speaking a Leukaemia and Lymphoma Research Connect Event.
Meeting Simon Weston and chatting about blood donors and public speaking tips was a real priviledge.
Speaking at the Mayor of Newport’s charity gala dinner as an ambassador for Teenage Cancer Trust
Life goes on though and I went see a concert the night I had my Hickman line put in- which you gotta admit is pretty awesome!
I am very honoured to be a Huffington Post blogger, and this particular one was also posted on RemissionPossible. It is our most popular blog today, and gave us our best ever day of views.
It also got us some very famous tweets!
It was the blog the launched the #remissionpossible campaign to get more people signed up to the stem cell registries
We believe the campaign has led to several hundred people signing up!
Of course I also celebrated Christmas, and Pie day in style- with many hundreds of calories consumed!
This is an incredibly brief summing-up of my first year with cancer (and mainly, 2014) I could have added hundreds of other photos, but I tried to keep it to stuff I really DID, stuff I’m really proud of and hold dear.
Keep Smiling, hope you had a good Christmas and Happy New Year!