Category Archives: Em’s Blogging.
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!
Finally I’m back!
I’ve had quite a break from writing and I really do think I deserve to update you all and get back to it!
So in the past few weeks it’s been rather eventful…
But I’ll start with the good news!
I’ve got a university place!
As of the 22nd of September I’ll be a student of University of South Wales doing a Foundation Science Year….which means I don’t have to go back to school (yay)
I loved my comprehensive (so you know) but I am so glad that I have new opportunities now and that I can do something alternative to A Levels. I really hadn’t imagined being able to do the whole university thing this year, with it being so close from transplant and me not having my levels so the unconditional offer feels slightly dreamlike! It’s going to mean that this year hasn’t held me back or restricted my options, I’ll be able to travel seeing friends while living at home and attempt to learn to drive (I am the most uncoordinated person ever…)
So yeah, I’m going to uni!
As for me, for the first time in quite a while I really feel like myself. My journey over the last 6 months most certainly hasn’t been as hard as it could have been, but that doesn’t mean that it has been easy by any means. Considering the time I’ve spent as an inpatient I can most definitely say it’s been tedious, and each hour in hospital (especially the isolated ones) have been felt!
I’ve just been trying to get back to normality, going out with friends, and am happy to be less restricted on what foods I can eat. I had my year 13 Leavers Ball at Cardiff Museum, which after much stressing over whether I would be able to go was a great evening. Funnily enough I was practically the last to leave! It was a slightly surreal leap back into something fab for the night, especially having been in isolation for the best part of four weeks, and great to be able to tell all the doctors and nurses I had made it!
The reason for my silence has been my being bit ill recently, and spending the majority of the last 6 weeks in hospital, between mysterious temperatures, the CMV virus and GvHD.
For those less familiar with the joys of life post-transplant, GvHD (for short) is one the most common post-transplant complications. In grafting to become your cells, the donor cells ‘attack’ your body’s remaining cells to dominate. They can also flare up and ‘attack’ other bits of you, generally skin, liver or gut cells. In my case, I got a spot of GvHD in my stomach and gut, resulting in rather a lot of sickness, some pain and a lot of waiting around and whining on my part. Oh and I also got to experience some fabulous camera and endoscopy work, which is on every teenager to-do list. Not. This cancer lark really is incredibly glamorous. Honestly, if you know any aspiring medics, half hour with me and they would know if it was the right path for them. I swear I have medical investigation history of an entire GP surgery over 60! (Plus extra)
Getting a ‘smidge’ of GvHD is a kind of good thing though. Obviously we don’t want to make me ill, but getting it shows that the grafting donor cells are fighting ‘foreign’ cells, which means they would fight off any rouge cancer cells. So I cant really complain, plus I think I’m pretty fixed up now, and am as above, feeling much better. Steroids do wonders for the appetite, I’ve quite scared myself with eating this week. There could quite possibly be a national cocktail sausage shortage after the amount I’ve eaten!
You need to be ready for some exciting news and new blogs coming soon!
In this blog I want to ‘shout out’ to two people, one I know very well, and one I know almost nothing at all about.
First of all, the stranger. Thank you for being so very kind. Between widely spaced hospital appointments this week, me and mum decided to treat ourselves to lunch at TGI Fridays. Not being entirely normal we order several starters and sides instead of meals, and I can surely say, there was TONS (I’m allowed, I’m on steroids). Due to the old compromised immune system, and the rest of the restaurant being fairly busy we had asked to be sat away from other people, and were near the bar. After chatting to my mum for a few minutes, a kind (and we think, restaurant regular) upon hearing we’d spent the rest of the day at the hospital, offered to pay for our meal for us! It was such a heart-warming surprise, we really have no idea who this man was, he just said that in illness being treated at Velindre, his mother had been shown great kindness and that he wanted to pay it forward. Whoever you are, thank you.
The other person is someone I’ve gotten to know so very well over the past few months, my lovely friend Elenid. I met her on her very first day in hospital, and seen her through all her treatment…where yesterday she was told she’s in complete remission!!!!! This is the BEST news anyone like us can hear!!! She is so so so so deserving of it, she is so awesome, and I hope your remission party tonight is full of piñatas and prosecco!
Hope this is an ok little update,
Emily x (new uni student!)
From the ball!
Vote for life this Election Day. Vote for something that will really do good.
Join the Anthony Nolan register at http://www.anthonynolan.org
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,
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.