Author Archives: Emily Clark
On the eve of the New Year, the final day before we venture into 2016, I am happy to announce I am officially one year cancer free.
I have been in remission a whole year!
365 days! (And more really)
What a year it’s been.
I always knew 2015 was going to be a hard year. I entered the with all the joy of knowing the chemo had worked, all the hope for the future and all the nervousness in the world for what was to come.
I had never thought the transplant would be easy, but I must admit when they told me to expect it to take a year to get better, I took that as a joke! I am the girl who went back to school two weeks after finishing chemo the first time after all…
There has been a lot more time spent in hospital this year, so much so that I have spent far more time as a resident of the Heath Hospital than my own house. I may go on about moving out a lot, but generally that’s been a wish to relocate to university halls… not the clinical dullness of inpatient life. We think I have spent around 300 days in hospital. Which is a bit bonkers when you think about it.
A year cancer free is a long time in the world of Burkitts lymphoma and I am so so happy to be at this point.
And really, I have achieved a lot this year. Growing a new immune system (however pants it may be at times)., starting my foundation course, being named one of Wales’ coolest women and Newport’ local hero. I’ve organised a Santa Run and an afternoon tea, persuaded my mum and friends to do the Cardiff Half and between the three raised well over £5000 for various charities. I’ve expanded my horizons beyond measure, met some fabulous people and lost some wonderful people as well. I’ve been to the weddings of some of my closest friends and family and celebrated leaving Sixth Form(ish) in the most amazing dress. I’ve gotten an offer for uni, and we finally had a proper family Christmas. (Which was at Bluestone, thanks to Dreams & Wishes and was THE BEST THING EVER)
I am overjoyed to be leaving this year behind and moving on, but this year has been in no way wasted. I know I’ll look back on it as being a rather dark time, yet I’m happy and always have been.
It may have been a bit of a hike, a struggle and the journey is far from over. In spite of all I can’t complain-
I am still here! (Which of course is a pretty good thing from where I’m standing!)
I’m typing this about to go into a pantomime, then I’m off to a New Years Party so this is all I have time for. That in itself is almost something to talk about, me having a social life! Funny.
Keep Smiling and HAPPY NEW YEAR!
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….)
Fancy getting yourself on Santa’s good list?
Need an excuse for ‘just one more’ mince pie?
Fancy showing the kids you’re not that unfit?
Want to help us save the lives of people with blood cancer, now and in the future?
OUR FAMILY SANTA RUN COULD BE THE EVENT FOR YOU!
As a child, the local Santa run around Croesyceiliog and Cwmbran Boating Lake was a big part of the run up to Christmas. Though admittedly I never took part, as a family we would go along to cheer on the runners, pick out our favourite Santa costumes and put some money in the buckets for charity. It was always a great morning out, a real community event where with runners and spectators, hundreds of people would be together, getting into the Christmas spirit. I would be waving my letter hoping to spot the real one.It’s now been several years since the last run, and we have decided to do something about it!
We want to create a fun filled morning, where everyone can enjoy a bit of pre-christmas cheer in the fresh air, get the community together- just do something that doesn’t involve hospitals….somewhere my family has spent the last two Christmases centred around. All this and raise some well deserved dosh for Bloodwise!
So who are Bloodwise?
Formerly Leukaemia and Lymphoma Research, Bloodwise were set up in 1960 by the Eastwood family after their daughter, Susan passed away from Leukaemia. The charity helped set up the first ever research unit dedicated to blood cancers in Great Ormond Street, and have played a huge part in seeing that 2/3rds of people diagnosed with Leukaemia, lymphoma or other blood cancers survive 5 years. In 1960, almost everyone died of their disease.
Yet they still have so much to do.
November 11th 2014 was one of the best days of my life. November 13th 2014 was one of the worst.
It’s been a whole year now since I found the new lump, and today marks a year since I officially found out I’d relapsed. The days in-between that involved the most incredible day in London when I sang at Royal Albert Hall.
And I’m a little confused as to how I feel about the whole thing. I have felt rather down, but more related to the amazing day I had, more than the cancer. After all, if I hadn’t accepted that by now, I don’t think I never would! It’s more that I feel emotional that it’s been a whole year since that day, the last day I felt completely well and completely me. I’m not saying that was the last time I was happy by any means, just that things had always felt like they’ve had to compromise in some way since then.
The recent anniversary has made me think a lot about how the world looks at people with cancer.
There has been a video circulating the Internet of a teen in New Zealand , Jake Bailey, who gave an amazing head boy speech shortly after being diagnosed with cancer. The speech is a great one, full of wisdom and integrity- made remarkable by the fact he was told he wouldn’t be able to leave hospital to make the speech. He admits the seriousness of his diagnosis, and how his doctors had told him he would be dead within weeks without treatment. That resonated deeply with me, because I was told the same things, told I had to start treatment immediately and we had the same diagnosis. Except I wasn’t cool enough to be head boy, giving a big speech. My personal speech was actually wanting to eat Christmas dinner. I got a chest drain instead. Yay for me
The thing that I hate about his story is that a large number of news outlets that have decided to interpret this as a terminal diagnosis. It isn’t. At all. For one, being told of certain death without treatment could apply to many cases diseases and conditions…..like diabetes or measles, so to be told that for a cancer diagnosis makes sense to me, the time frame only showing the seriousness of the situation. His teacher even makes a point of saying that Jake has a good prognosis. It really angers me that he would then be reported as dying!
Imagine how it would make you feel, to battle hard to be able to make a speech, to have so many people be touched by the story and you achieve your goal of touching people ad impart an important message, only for the point of it to be ovr-ruled by silly and thoughtless journalism. Imagine having people talk about you as if you were on your deathbed when YOU ARE NOT.
There seems to be a love of tradgedy surrounding teenagers and cancer. For though I’m sure no one wants anyone to die, there is a certain feeling of love towards that martyrdom, ‘waste of life’ etc. And I am just so confused by it. Fed up of hearing about it. Because this journey shouldn’t be sensationalised.
Plenty of people have heard my views on what Hollywood does in stories about people with cancer. Well media, this week my message to you is that the same of m continually message to film directors and writers…. Not everyone with cancer dies. Or is going to die. Some of us do pretty well. Even the ones who can write and give awesome speeches. Even the ones who even I will say are pretty ‘inspirational’ despite my squeamishness around that word.
it makes me wonder how I could be perceived. I may be bald, and spend most of my time on a cancer ward, but I don’t have cancer. And I haven’t had cancer for the whole of this year (!) I reached remission on New Years Eve It really seems to go against the way we are sort of taught to perceive and stereotype this illness, to think that people are getting better, even if they aren’t looking ‘normal’. My mum has had several people assume that because I’m still coming back and forward hospital, I’m still seriously ill and have reacted in a negative way upon hearing I’m not on chemo…. assuming the worst and that chemo isn’t working , not the truth which is that I don’t need it!!
It’s what’s getting me through this week, just that thought that though it has been a year since everything came crashing down again, though it’s been a year since I had that wonderful fab day in Royal Albert Hall, being a year since relapse also means I am so so close to being a year in remission. Won’t it be the best way to start 2016 knowing I’ve been disease free for a year?
Hopefully I can enter 2016 well and truly clear of my pesky virus’ also!
if you want to watch the awesome speech I’ve talked about, you can below 🙂
It’s been a while again, but I want to thank everyone for their well wishes regarding the treatment in Bristol. The first one went well, and I’m due to go for the next on Thursday and Friday this week. The process of the treatment was simpler than I had thought it would be, and was very relaxed- each day I arrive, get hooked up to the machine, and just sit in the chair (a nice one like the dentist’s) and wait for the machine to do its thing.
All whilst looking incredibly chic in my sunglasses and bobble hat! We went for coffee after the treatment on one of the days, and the photo below was the result of my ‘cool’ outfit and a very large plant. Whoever knew Bristol Royal Infirmary was so exotic?
Another update: I’m no longer an inpatient!!!!! I am finally home, though having to return to TCT daily for my infusions, I still need treatment for the CMV. Thankfully my bloodwork is showing the drugs ae taking an effect, so it’s all good.
The final thing I touched upon during my last ‘update’ blog was my hair. It continued to fall out over the past few weeks, so I have now shaved it off. And I’m not too upset. The transition from patchy-fally-outy to skinheadish is definitely a positive one. I may still be devastated that it has fallen out, but I’m glad I won’t have hair all over the place any more. Please remember: my being bald doesn’t mean I am suddenly more ill, or have cancer again. It’s just become a part of my post-transplant journey, something all transplantees will agree is weird, unpredictable and just plain doesn’t make sense most of the time. I’m still ill, but not. It’s a bit of a confusing place to be, this recovery phase and even more confusing to try and explain. Also, being bald DOES NOT mean I look like Sinead O’Connor. Or any other bald woman. Because I really don’t, you know except for the fact we have no hair.
I’m glad this next week is going to be a busy one, with Bristol, TCT Cardiff every day, being in uni and assignment hand ins because it’s also the anniversary of the week I found out I’d relapsed. Which means a year has gone by already. Can you believe a whole year has gone by? I’m struggling to, because though I feel like forever has passed by since everything went up sh*t creek, a year seems like such a long portion of time to know I’ve been in this way for. I may talk more about it later in the week. I don’t know. Urgh. And that means 2 years since diagnosis is impending, but also the mark of me being a year in remission (YAY)
There will be a full-on post coming about it soon, but get your Santa costumes, tinsel and baubles and be ready to run to beat blood cancer!
It’s going to be on the Saturday 12th December at 10am from the Olive Tree near the Oasis in Croesyceiliog, in association with Griffithstown Harriers and in aid of Bloodwise. It’s going to be fun for all, and at only 2 miles the whole family will be able to get involved! It’s only £5 to register and I can’t think of an easier way to get on Santa’s good list…
Keep your eyes peeled for more information over the next few days, but if you’re already sold, you can sign up at https://bloodwise.org.uk/event-challenges/run/family-santa-runl
PS. A HUGE thank you to the Knitting Cwtch at Llantarnam Grange for their amazing donation of hand knitted hats. The skill and craftsmanship that has gone into them is beyond belief, as is the number! There are hats going to the Noah’s Ark Children’s Hospital, Teenage Cancer Trust Cardiff and the Oncology Centre in Bristol. I will post some pictures of them being modelled when I can!
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*)
I’m doing ok.
As a family we’re doing ok.
To just be ok, is showing how hard it is at the moment. Like really, really hard and more emotionally draining than it has all ever been before.
AS usual I feel I am completely a tale of two halves. The ‘right here, in front of you’ me seems to be doing pretty well. I’ve started uni, made some friends, made a few of my classes. I can walk about and chat, ad go for lunch with my family. I can squeal over Bake-Off like everyone else in Britain and on Saturday I am going to the wedding of on of my most treasured friends. It’s not an exciting life, but it works and I am lucky for it.
The ‘medical notes’ me is in quite a different place. The skin graft versus host disease (GvHD) has progressed rather dramatically over the last few weeks and is the main reason this blog has been in the writing for quite a while. Trying to explain everything that going on is overwhelming and upsetting , especially I really felt that I would be ‘better’ by now, or at least feeling like things are significantly on the up. As well as having hospitalisations for the ongoing infections and temperature spikes, the breakdown of my skin has led to me being referred to start a specialist treatment called Extra-Corporal-Photopheresis, abreviated to ECP for short.
I have been through a lot, and had some insane treatments (having someone else’s DNA for example!) but this one is hands down the most mental, and sci-fi of them all so far. Don’t quote me on any of this detail, but to my understanding it is a rather revolutionary, yet novel treatment that is really changing things for people with GvHD like me.
It involves a process like dialysis, where blood is taken out of my body and filtered into a machine. It is then separated into the different components and the red blood cells and plasma go straight back into me. The white blood cells are then mixed with some medication that makes them sensitive to UV and exposed to it. SOMEHOW this sun bedding of my blood will improve the condition for my skin!!!!!
It is completely bonkers. And I love that.
They have no idea why it works, but I’m so glad that some fabulous scientist had this theory and tested it out because I have such high hopes for it. It’s down to this GvHD that really feel that I have been struggling emotionally. The current treatment is immunosuppression which is obviously contributing to the contraction of all these infections and is probably why I can’t get rid of the para-influenza I currently harbour which means I have to spend all of my inpatient time in isolation, which is as you can imagine, horrible, especially seeing as I am a social person. It really could lead to me not having to spend so much time in hospital, which since June has definitely been more ‘in’ than at home .I’m actually in hospital typing this, after having spiked on Tuesday night.
The thing that I have the highest hopes for is the improvement of my hair. Since the transplant my hair has grown back but recently most of it has fallen out again, as a result of the skin GvHD. As you can imagine this is absolutely devastating, to finally look like I’m getting better, and then look patchy and sick again. The most horrible thing is that I don’t know when it will grow back, I just have to treat my scalp well, do my treatments and hope. I hate the uncertainty, because though hair loss is nothing new for me, before it was end of chemo = hair. Now it’s rather a lot more of a grey area. (The situation not the hair. At least not my hair)
It is very important to take notice at this point that I said the GvHD was causing the loss NOT cancer, and NOT chemotherapy. I would hate for someone to think that I had relapsed because I has a headscarf or hat on. From that point of view medically I’m doing very well, thank you very much! It’s not a thing against people with cancer, duh, but I want people to know how even though this is so so hard and I’m still ill, I’m on the mend.
So that’s where I’m at. Juggling going to university with being an inpatient and am going to be having crazy special skin treatment…. The CMV virus has flared up again (according to my blood results) so I’m stuck in hospital for some time yet.
Oh, and I won an award!
I literally don’t actually know much about it, but last night I won the ‘Local Hero’ Award at the Voice Magazine (for Newport)’s V Awards! I had been invited to the ceremony, but had assumed it was an invite due to my being in the charity circles from doing work with the Mayor last year. I hadn’t imagined I had WON something. Goodness. I didn’t get to go, what with being stuck in TCT, but it is a big honour to have. Thanks to everyone at the Voice and whatever kind person/people who nominated me.
On that more happy note than above, keep smiling….
I hope this title isn’t too alarming. Don’t worry, my mother is still bringing me food, driving me places and hasn’t upped sticks and left after this getting too much for her.
What she IS doing is probably seen as just as crazy to the more horizontally inclined of us. It has involved 5.30am alarms, lycra and an attempted pasta ban (!)
Very soon she will be running the Cardiff Half Marathon, all in aid of Anthony Nolan.
Isn’t that amazing!?
Up until now our fundraising has been mainly based around for cake, me talking at people to persuade them out of their money and bucket collects. No lycra. That’s all changed now though!
Somehow my mum has ended up a runner. I’d like to think it wasn’t my fault, but that would be total delusion! I had originally planned to do the race myself, however my body had different ideas, and bone marrow transplants don’t train you very well for much beyond the sofa! Thankfully my mum doesn’t blame me completely and has another reason bar it being in replacement of/on my behalf.
Linking nicely with it being for Anthony Nolan, she wanted to improve her health- so that if she were to be called up to be a bone marrow donor for someone else, she would pass the medical.
See what I mean when I say my mum is fab!
Please, I feel I’ve kept it quiet but I really have spent most of this summer in hospital. It would have been incredibly easy for her to have given up, passed her place on and just not given herself the stress of juggling training as well as me/other 3 kids/ hospital/stuff.
I don’t want this blog to be all ‘my mum, my mum’….she does have her own voice.
“We started like so many as part of a New Years resolution. Couch to 5k was our aim. Week one after 43 seconds I was broken. Admittedly I hadn’t run since 1985 when I did 800 meters, but we kept with it. I have run every week since. Sometimes in the snow, around the car park while Emily has been in radiotherapy, sometimes so early Lobby isn’t up (!) We have surprised those around us and amazed ourselves.”
It’s not just her though- she has formed ‘Team RemissionPossible’ with two other school mums and between them they are also running for Bloodwise and Look Good Feel Better. All worthy causes I think you’ll agree. For me, between them they represent my passions in charity work to with cancer-
– Bloodwise are funding research to try and bring the day when all 137 types of blood cancer are cured, and make the treatments kinder.
– Anthony Nolan are finding lifesaving matches for people who need bone marrow transplants (need I say any more?!)
– Look Good Feel Better are all about making that time with cancer easier, by reinstilling women and girls with confidence in themselves. As a recipient of this charity’s work I can surely say if you look good, you do feel better!
So mum (Donna) , Rachel and Victoria, Tanya and Beth- I think you’re bonkers but amazing! While I had intended on doing the run myself, you would never have seen me tackling a 10 mile run on a Sunday morning, nor leaving early enough to be BACK in time to make breakfast! Heroes.
I’d love it if you could take a moment and donate some money towards their cause. The support will get them through the miles but MORE IMPORTANTLY fund the awesome work if the charities that have contributed so immensely into getting me where I am today. I can certainly say without the work of Bloodwise and Anthony Nolan I wouldn’t be typing these words, and without Look Good Feel Better I wouldn’t be doing it with as much confidence.
Remember, every little helps! Here’s their team page where you can donate to their induvidual pages https://www.justgiving.com/teams/Run4Remission
Keep Smiling (and running) 💃💃💃👟
Despite my best intentions, I really have been lacking in blogs recently.
Now I am in the middle of another hospital stay, and some investigations into my recurring infections. I don’t really want to even attempt to explain until I have some explanations myself.
I seem to be stuck in a loop of Sunday – Wednesday admissions (several weeks in a row) and unexplained temperature spikes.
I just want to say a huge thank you for all my birthday wishes, I had a fabulous day, full of ‘normal’ 18th birthday things.
(Yes it was a while ago already)
If I don’t blog soon….nag me! I really need to get back on it so if you want my thoughts on something in particular please say 🙂
Today I am officially 6 months and one week post transplant. Counting the weeks I know 27 have passed. A quick search on my phone tells me that it was 187 days I received new life, but that could be lies seeing as I stopped counting days at 100.
I meant to write a post on the actual six month, but hospital admissions got in the way of that, and what is a blog unless you feel like it. I guess that’s the element of “no matter how it may seem” about all this.
Because in the past week, I have taken the single biggest step since having the transplant in way of.recovery.
It’s probably the most exciting step as well….
I HAD MY HICKMAN LINE TAKEN OUT!!!!
Anyone who has ever has to live with any sort of permanent central line will know what a huge deal this is and how much it means.
Admittedly, I had it removed due to infection (not my fault may I add) but the fact it hasn’t been replaced shows how I am no longer dependant on electrolyte and blood product infusions. Less than two months ago I was having blood every fortnight, platelets almost 3 times a week and magnesium at least twice. I’ve come a long way.
I may still have CMV, but I’m having a new form of treatment for that, so that’s all good. I still have this mysterious para – influenza, the flu that doesn’t make you feel ill, and we can’t get rid of….but that’s all good. I probably still have mild GvHD. Clinically I look a bit shifty still, but even my consultant has to admit in that person I don’t really match up to my notes, I’m too well!
I’m a great believer that if.youre well enough to be bored, you can’t be that ill, and this past hospital admission has really shown that. Thankfully I was discharged today!
I am so happy with where everything’s going. I’ve had a Chinese takeaway, something we couldn’t have dared do without a decent neutrophil count, however the removal of my stiches today has lead to the most exciting development…
I have had a PROPER bath for first time in 9 months!
Yes, this is a weird thing to share, and yes I have been washing since November, let’s make that clear.
You see, living with a hickman line isn’t all about just having a tube you can see. It’s a tube that genuinely goes inside of you, meaning anything that tube is exposed to can too. Meaning washing becomes a fiasco of tape and towels, and not getting the dressing wet and being careful and most definitely not having a deep relaxing bath.
Having one today was freedom. Bubbly, hydromoly, blissful freedom.
I am very glad the bathroom is a private place because if anyone had seen the way I was smiling just laying in the bath, I fear I may be off a rather different type of hospital for sure!
Just imagine though (if you’re a bath kinda person) how great a deep, hot, bubbly bath on a bog standard day…
Now imagine it after being discharged
from hospital, after having to have a cannula placed, needing a relax AND having been deprived of a proper bath for almost 9 months. You can see why I’m a happy chickie right now.
Don’t take the little things for granted, because they are great. I’m not saying that to make you be ‘inspired’, make you reassess your life or suddenly start crazy philanthropy. People with cancer are ordinary cool people with the short end of the stick. I’m saying it because life is awesome. Especially the bits with baths and Chinese food and steak. Hickman lines and transplants and doctors and all that are pretty great too, but it’s better when we don’t need them.
I hope you’re all doing well and that you get in touch with how your lives are going 🙂
P’S. In case you were wondering, because these things are of great worldly importance, yes my bath did indeed have a rubber duck 😀
Next stop : The Beach!