Blood Cancer. Our story.

Don’t worry!  Before you start reading, this is a positive, informative post, about #bloodcancer. It’s also a post about us, and what happened 2 years ago.
I hope it will be the kind of post I wish I’d stumbled across, in the early days, when Gav was just diagnosed and we were scared.
And I hope it might inspire you, to get on the stem cell register to potentially save someone’s life. (I know a lot of you already did, and I’m still getting messages from you telling me your donor card arrived )
Anyway, I’ll try not to ramble but stick with me if you can ! (Who am I kidding, I already know I’ll ramble )
Exactly 2 years ago, Gav was complaining of a sore tummy. (His family history is bowel cancer, so we are vigilant with the colonoscopies)
He seemed to have had a sore tummy on and off for months and months but, ya know, he’s a bloke, and doesn’t like bothering the doctor.
In the end, after quite a lot of persuading (by which I mean made an appointment to see the specialist and dragged him there) it was decided that he ought to have a CT scan. Just to ‘eliminate anything nasty’
By this time it was getting on towards December 2014. He had the scan and on the day he was going for the results, I was working, so he went alone. BIG MISTAKE (at this point I’d like to recommend that no one, ever, goes for any kind of scan results, alone, ever again. No matter how confident you might feel that the scan has just been a precaution)
He came home, as white as a sheet and said the words I’d been dreading, and pushing away to the back of my mind, because the scan was a precaution, right?  ‘Sal, they found cancer. I have cancer’
That awful life changing moment.
I clearly remember it and it makes me cry even thinking back to it, but we clung on to each other, in tears, and we felt like the whole world, our whole, safe, world had literally been pulled from under us, and we were clinging on to each other, in the dark, on the edge of a huge precipice and if we dared even move we’d fall in. Nothing felt safe. There was no safe path and for once, Google was not going to help.
We were told later that evening, when we spoke to the specialist that Gav had ‘a lymphoma’ of which they weren’t sure what type – so he’d need a PET scan, bone marrow biopsy, and lymph node biopsies the following week. That took us to Dec 17th (in my head I’m cancelling Christmas and panicking that the Christmas stockings weren’t done and I haven’t even ordered a turkey! ) the defining results would be in by Jan 2nd ‘so we will see you then. Don’t google anything and try not to worry’
Wait… JANUARY?!!!! We have to wait nearly three weeks?!!!! Omg not knowing?? And actually I have googled it and there’s 200 types and some aren’t cureable and some need chemo and you might die and and and !!!!!  and before today I had only vaguely heard of lymphoma and Hodgkins and NonHodgkins and what does that even mean???!!!
Christmas was awful. We hadn’t told the kids as there was nothing to tell and we needed to be armed with answers to their inevitable questions (the boys were 11, 15 and 16 then)
We ploughed through it like we were walking through treacle. Crying when no one was looking, and smiling when they were.
Having no definite diagnosis was truly the worst. No action could be taken. No decisions could be made. No treatment could be started. We were in what I now call ‘The Freefall Weeks’. No doctor could help. Not until we had the firm diagnosis. And no one could say ‘it’ll be ok’ .
Christmas lost its sparkle that year. Presents to each other seemed pointless. Health was all we wanted. Not perfume or bags or any frippery. Nothing mattered. (And my sparkle for stuff like that was lost for a long time. It was months and months later that I decided I’d like a new bag and everyone in our family rejoiced as normality was returning ! Haha!  I remember standing in the middle of Laura Ashley January sale with my mum cajoling me to buy a dress to wear to her 70th and I was in floods of tears worrying about what to do with Gav’s tractor collection (proper ones I hasten to add, not toy ones) and totally ignoring all the lovely dresses at 70% off. The things that stick in my mind )
Anyway, somehow we got through to Jan 2nd 2015 ( this was the first year ever I’d lost a stone instead of gaining one, over Christmas and the Quality Street tin remained unopened  Gav remained stoical and strong – focused on getting through to the 2nd. Coping. Getting through, and all the while looking so well, he couldn’t be ill, surely ?)
2nd Jan 2015
‘Well Gav’ said the specialist, ‘You have stage 1V follicular NonHodgkins Lymphoma and it’s incurable’
There. That’s it. Right there. Dry mouth, a falling sensation, and a spinning room followed and Gav, Lord love that man, said steady as a rock ‘how long have I got’
It was like something out of an awful film only we weren’t watching it scoffing popcorn, we were in it. And it was real. Terribly terribly real.
We would be hurled in to explanations about treatment regimes and choices and loads of stuff we didn’t even hear as we seemed to go deaf.
Right here is when I say I’m still struggling to forgive the specialist for his hammer blow delivery. 2 years on and we understand that although it’s said to be incurable, it is VERY TREATABLE . And stage 1V is not anywhere near as scary as it sounds. And most people are diagnosed at this stage and some don’t even need chemo. I struggle to understand why he didn’t rescue us by telling us that incurable does NOT mean terminal. It was the Macmillian nurse, who cleared that up, a week or so later. And I’ll love her forever. I believe that Macmillian nurses Hoover up the fallout from old school oncologists’ diagnosis’ and they have angel wings that you can’t see because they tuck them in to their knickers. They lie in wait for people like us, and rescue them during their tsunami. Because cancer feels like a tsunami. (Well it did to us)
So here’s a bit of info
Hodgkins lymphoma is largely thought to be cureable, and it was discovered by Dr Hodgkins.
Non Hodgkin’s lymphoma (in particular Follicular) is largely not cureable (but it’s very treatable, and treatable for many many years) and wasn’t discovered by Dr Hodgkins. That’s the difference between them. Loosely. Poor old bloke who discovered NonHodgkins! Bet he was a bit annoyed to not get his name above the door, so to speak .
Symptoms can include a lump, extreme fatigue, back ache, weight loss, unexplained bruising, itching, night sweats. Or none of these. If you are diagnosed and had any of these, your diagnosis will be suffixed with a ‘B’ if you didn’t, your diagnosis will have an ‘A’
Here is a safe website to look at, if this is happening to you and you don’t know where to look  I found it, one awful night at 3am, unable to sleep and quietly (so as not to wake Gav) desperate for answers,  yet scared to look for any. I’ve called them countless times and they are wonderful.
FNHL is a disease that you live with, and treat when it flares. If it’s not flaring and active, you don’t need treatment. You watch and wait (watch and worry I call it) treatment won’t stop another attack coming it can only treat the attack that’s happening (rather like asthma – you don’t puff on the inhaler unless you are having an attack, right? And there’s no point puffing when you aren’t having an attack as it won’t stop the next one coming, that make sense? And Asthma is incurable too…just to illustrate my point about incurable and terminal)
So when you aren’t ‘under attack’ you don’t need any treatment. And that might continue for YEARS.
Chemo is an option if the blood cancer becomes aggressive (FNHL is indolent, lazy, slow, non aggressive. It mooches round politely until it decides to become aggressive. I liken it to living with a sleeping shark.)

Hits Home…
Knocked out on the anti sickness drugs

In our case, Gav didn’t need chemo but was put on a trial of a well used and trusted drug called Rituximab (it’s usually mixed with chemo and then given for two years after chemo ends) we skipped the chemo bit and hopped straight on to Rituximab as a mono therapy. Gav’s first 4 treatments were infusions that took 9 hours at a time. It was scary because he reacted badly to it so it was stopped and slowed down even more. If this happens to you, don’t worry, it’s just given very very slowly. (I’m sorry if this bit is boring but I’m writing this medical bit incase anyone reading it is going through what we went through and I hope it can help)  we are really lucky in the UK as after the initial 4 infusion treatments, (see pics above) it’s administered as an injection in to his skin – they like to find a nice squishy place, so they chose his tummy haha (rather than as another infusion in to a vein) Which is super quick (it’s 11ml & that is a lot of fluid to inject and he ends up with what I call ‘a pouch ‘ that takes a few hours to absorb. And the nurse ends up with a sore thumb!)

Sorry for the close up!

Gav says it doesn’t hurt. I wanted to show what is ‘normal’ after the injection. It all scared me – needlessly. And I don’t want it to scare anyone else, if this is happening to you. You can clearly see the ‘Pouch’ in the top pic. This eventually absorbs. Sometimes he’s get a huge painless bruise. Sometimes not.
Rituximab is an immunotherapy. Which is nontoxic with no side effects. It seeks out cancer cells and ‘snuffs them out’ like a thousand heat seeking missiles.
We go every 8 weeks for two years. He feels tired about 2 hours after the injection and sleeps for a couple of hours when we get home. Apparently it’s the Piriton rather than the Rituximab that wipes him out. He’s right as rain by teatime and the next day his cheeks are flushed. That’s it. Immunotherapy is amazing and it’s being used more and more for blood cancers. (Clearly though, am not actual doctor and these are just my thoughts & learnings)
Rituximab compromises your immune system. Colds can take weeks to go. Cuts take ages to heal. All this we can cope with ( although I do have a few theories on what it does to your immune system and how that can affect you – a post for another day)
Next year the treatment ends. And we pray it holds him in a steady remission for a very long time.
Stem cell transplants can be the last option if chemo and other treatments stop working and relapse occurs.
This is where you come in !
September is Blood Cancer Awareness month.
Getting on the register to donate your amazing stem cells is easy ! You can either go to Anthony Nolan if you’re a between 17 and 30, or DKMS & you can register here from 17 – 55yrs. All the registers are checked when someone needs a match.
They’ll send you a ‘spit kit’ or a mouth swab (like a big cotton wool bud)
Spit in to the tube or swab your cheek (bit gross but not bad really!) and send it back in the post. That’s it. Easy as that.
The really brilliant part of becoming a potential donor, is that, to donate stem cells, you don’t have to actually die to donate! Yay! (Carrying an organ  donor card is a different thing altogether and not to be muddled with this)  If you’re lucky enough to be a match for somebody, you donate your blood from one arm, the stem cells are extracted, and what isn’t needed goes back into your other arm.  Then your beautiful cells are rushed to the patient, wherever in the world that may be, by one of a lovely army of people that do that as their job ❤
In a very teeny percentage of cases, the stem cells might need to be extracted by a needle from your hip but I promise compared to the person who will certainly  die with out your life saving cells, a bruise on your hip is nothing to worry about. Being scared of needles doesn’t cut it. The balance is not comparable. And like I said, it’s a teeny percentage taken like this, but you have to be willing to donate either way. Imagine how devastating it would be to be told as a patient they’d found a life saving match but oh, sorry , no,  the donor won’t donate after all. Utterly devastating. So be prepared for either!
Crumbs – I told you I’d ramble
Anyway, if you’re still with me, you need to know that Gav is on top form! Living life to the fullest, and in a weird way, we are grateful to his cancer for ‘lifting the veil on life’ we have such clarity on what and who is important. We are grateful for everything and every day. We don’t wish our lives away by saying ‘roll on the weekend’ we don’t even mind the rain haha (except if he’s dragged us camping, then we mind the rain )
His tummy pains never went away and everyone agreed it wasn’t the cancer causing them. So it seems we discovered his lymphoma by accident. And he has since cut gluten and lactose completely from his diet. Guess what, the pains vanished so he was tested for coeliac. That came back negative so he carried on anyway was he feels much better off gluten.
When we were on holiday he ordered a pinacolada and within 20 minutes all the old pains were back. Duh !!! We googled the ingredients and it’s made with cream and/or  condensed milk . So lactose was possibly the cause of the pains all along
I’ve got so many theories on all of this but I feel like I’ve taken up enough of your time ! Anyone is welcome to message me or email me (
If you’re diagnosed with an incurable blood cancer like Follicular NonHodgkins Lymphoma, please know the difference between incurable and terminal. Know too, that the prognosis is good. Realise that statistics on old information sheets can be a load of rubbish and talk to people who know, not Siri or google or someone who’s Mum’s friend died of it.
Ignore anyone who  tries to be ‘helpful’ and square the statistics in a more palatable way {usually for them, not you} and says stuff like ‘oh well we could all get run over by a bus tomorrow’ (side note, don’t ever say that to anyone to try and make them feel better. I guarantee it won’t. After all, sure, you can get run over by a bus, any of us could, but we also live with a sleeping shark called Cancer. So we have the bus AND the cancer to dodge here!)
Be as sure footed as you can, on your path. Our path feels better now. It’s solid and wide and goes off in to the distance.  There’s a sleeping shark for sure, but it doesn’t keep us awake at night and instead of a dead invisible weight we have to drag with us everywhere we go,  it’s… well, more a clutch bag size that we carry around with us. It’s quite ok. And if it morphs back in to a biting shark one day, we’ll deal with it.
Thankyou from the bottom of my heart if you got this far. Step up for your medal
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51 Thoughts on Blood Cancer. Our story.
    Karan Sheahan
    2 Sep 2016

    totally in awe of you Heels…… I can’t even begin to tell you how much you inspire me… you really should be writing to educate everyone on family values and stuff… see told you I’m rubbish with words. Much Love xxxxx

      2 Sep 2016

      You’re not rubbish you’re lovely ??

    2 Sep 2016

    Love ya.xx

      2 Sep 2016

      Backatcha Nanc xxx means LOADS XX

    2 Sep 2016

    Done!!! Really inspiring to read- not rambly at all!!!!! Xxx

    Gill Roberts
    2 Sep 2016

    Such a moving story, Sal.
    And you’re so right; we ought to cherish and be thank you for each day.
    You’re amazing and Gav is truly blessed to have you.
    Sending love to you both

      7 Sep 2016

      Gill ?? thankyou xxx much love back xx ??

    2 Sep 2016

    A truly inspirational read Amazing strength and love shines through ??xx

    3 Sep 2016

    Felt like you were telling my story ! Love you sal

      3 Sep 2016

      Suni, I’m SO glad we found each other – hope all is well your end sweet friend xxx

    Jan Willey
    3 Sep 2016

    Hi Sally. Just to say how informative, positive and up-lifting your piece is. I only “know” you through Instagram (sunshine_and_stripes) and have always thought what a lovely person you must be from your posts and comments. So good to hear that it is all positive with your hubby at the mo. I’m just about to investigate the possibility of donating stem cells. I was told a few months ago that we are too old (62 and 64) and I didn’t actually go to the website to confirm. Our nephew has myeloma with associated kidney failure and is now on the donor register just waiting. He had a stem cell transplant using his own stem cells, with huge doses of chemo at various times to enable this. He is doing well at the moment and we pray this continues for as long as poss. Sorry, I seem to have rambled on for a while!! Just to say thank you and good luck to your Gav. Sending warm wishes, Jan x

      3 Sep 2016

      Jan thankyou ! I hope your nephew goes from strength to strength – your own stem cells are great because your body won’t reject them and your remission can be quite long – using someone else’s has a risk of rejection but the remission can be thought of as a cure. I think that’s right
      I’m so glad we ‘met’ through Instagram and you haven’t rambled ! I loved reading your comments here xxx thankyou Jan xxx

        Jan Willey
        3 Sep 2016

        ? xxx

    Caroline Martin
    3 Sep 2016

    Sally you’re completely amazing. I read your post from start to finish and I’m so pleased that there are people like you in the world. Your lovely husband is so lucky to have you. You write articulately and informatively- you’re a great team. Thank you for sharing this with us. It sounds like ones worst nightmare and there by the grace go us. I wish Gav a complete recovery and many happy years together. He can’t go wrong with you by his side! Big hugs and again, thank you. I will be looking into the stem cells donation. Caroline Martin

      3 Sep 2016

      Caroline thankyou so much xxxx ??

    3 Sep 2016

    What a fanatic informative blog, it contains everything you would want to know if you found yourself in the same place. Honest writing from the heart Sally ? You are my favourite on Instagram.. you are funny ..grounded and oh so stylish. I had a scare this year and I can tell you that your life does flash in front of you. I too don’t care about rainy days. You are Gav’s ‘Rock’ so please take time to care for yourself too on your journey. May it be a long and happy one.
    Lots of love Denise xxxx ?

      3 Sep 2016

      OMG I’m so sorry that you had a scare, and hope all is ok now ! It reaffirms everything, doesn’t it xx thankyou SO much Denise ??????

    3 Sep 2016

    Lovely Sally, i teared up reading about your voyage into waitin-for-a-diagnosis-hell and i sm glad it all went so well for him and you. Now, tears wiped away, i want to tell you, that you wrote this so well, emphatic and helpful. I sm dealing with lymphomas of the skin almost every day as a doctor, and i try to explain everything as clear and complete as possible to my patients, but now i will talk even more, with your words and feelings of desperation and helpnessless in my mind. Because i want to be like that nurse, nit like that (insert bad word) doc, who let you be afraid although you didn’t have to be. Also, i am ashamed to admit, i didn’t send the swipe in yet, had it lying around for months, will do it right now!

      3 Sep 2016

      Jana, thankyou so much for reading it means so much that you did and I wish you were our doctor because you sound lovely ?? (send that swab in! ?) ??

    Pauline Bellorini
    3 Sep 2016

    Uplifting article fully of hope, and reality. Love you all – ‘cuzzies’. Just keep planning next years’ hols. XXXXX

    3 Sep 2016

    Really fantastic blog Sally <3 Lots of good things in store for Gav – (I promised you I would be looking into it and I am). With you by his side he will never let that shark bite….. Love you lots xxxx

      3 Sep 2016

      Thank you my love xxx ??

    Kate Macleod
    3 Sep 2016

    Hi Sally …. we’ve only met through Instagram (….KateMacleod88….) but oh how I love reading your latest posts …. you always make me laugh out loud! So pleased to have now discovered your Blog ….. So too my thanks for sharing such a truly inspiring and emotionally intelligent piece on your own personal journey through the vagaries of this illness. All your comments rang so true with me of how it feels to be given such a diagnosis, the fear, uncertainty and just general unpreparedness (is that a word??) of what it all means ….. your Blog is a gift to ease those who are currently afraid and alone with a diagnosis that is hard to contemplate or understand. I wish you and Gav many years of happy loving ahead and I’m sending you a huge warm hug all the way from Scotland!! Xxxx

    Helen Johnson
    3 Sep 2016

    Such honest and heartfelt words Sally and so well written. I’m sure this will help anyone who has a similar struggle ahead of them. It was like re living our experience 4 years ago and gave me chills as I read it. Luckily mine was a mis- diagnosis for something different ( luckily doesn’t seem the right word to use but I know that’s what I was.)But the blunt ( and in my case totally incorrect) words of the radiologist will always haunt me and will be forever etched in my memory.There is a certain Christina Perry song that still makes me cry whenever I hear as it transports me straight back there. I’m so glad that Gavs condition is treatable and it’s great that you’ve got this message across. We are all so terrified of the ‘C’ word and we always think the worst. You are also so right about the McMillan nurses they are Angels on earth. I will send off for some donor packs. Personally I think all babies that are born should have a blood and DNA sample taken . We would live in a world with less crime and people waiting for living donors that’s for sure.
    Thankyou to you and your courageous family for sharing this with us. Big hugs to you all. Xx

      3 Sep 2016

      Helen, your words are lovely xxx I think your idea is a really good one, too xxx and Jar of Hearts, and Robot, make me sad too – was it one of those?
      I’m sorry you went through what you went through but I’m SO happy it wasn’t to be and they were wrong xxx much love to you xx hope to see you soon ??

    3 Sep 2016

    Sally, this is brilliant. So well written, clear, informative, encouraging and filled with the loveliness that is you. So pleased you Gav is doing so well. Much love ? Justine x x

      3 Sep 2016

      That’s so lovely of you THANKYOU ? thankyou for taking the time to read it xxxx

    Sarah Y
    4 Sep 2016

    Sally, oh my gosh I love you, and how you have this amazing ability to describe everything so perfectly. I read this with a tear running down my face (and a cuppa in my hand as a bit of a distraction mechanism from making that a few more tears). When I read the word ‘incurable’ in your post, I had that shear dread feeling pop along, but after reading further, understand that it doesn’t mean the other dreaded word, so you have raised even more awareness now! I had a ‘c’ word scare at the start of this year, its incredible how quickly your attitude to life can change for the better. Im very much one of the lucky ones as I was able to walk out of the incredibly busy breast clinic with a hidden heart smile and a sigh of relief.
    Because of your post regarding Delete Blood Cancer a few months ago, I received my donor card recently. The awareness you have made is incredible, and I honestly do hope that I’m one of those people that gets that call (even if it does mean having a needle in the hip) just to know it might be helping someone.
    Keep smiling, passing on your amazingness to us all over on Instagram, and being a wonderful wife / mother to your beautiful family. With lots of love and hugs, Sarah (sarah._yx)

      4 Sep 2016

      Sarah, thankyou so so much for taking the time to read my post, and to comment, it means so much xxx I was reading an article the other day, regarding Gav’s diagnosis, and the whole ‘incurable’ thing. The doctors were saying that if someone lives symptom free for say, 20 years, why can’t they say they’re cured? Even though there might still be (and probably is) a rogue few bad cells scattered about not doing much. The label ‘incurable’ is a tough one to live with, but knowing the prognosis for many is good, helps! I met a man who has Gav’s exact diagnosis (in the salon, a client) and he was given 3-5 years, 20 years ago. He says they still won’t say he’s cured!
      I’m really glad you were able to leave your clinic with relief in your heart, and seeing life in a fresh way xxxx so many people seem to plod through life, not noticing anything, or each other – a brush with the C word can be a good thing to wake us all up ! (I feel we are lucky too. Other outcomes aren’t like ours here) thankyou for getting on the register too!! What an amazing thing it would be to get a match ?? much love S xxx

    Jackie mouat
    4 Sep 2016

    Beautifully written Sally x x x

      4 Sep 2016

      ?? thanks Jackie xx

    Jo Bebbington
    4 Sep 2016

    Dear Sally, wow reading this has bought tears to my eyes , so well written and informative. i admire your positivity and strength, you have all been through so much, i’m so happy for you all that Gav is doing so well. Will be registering today. Much Love Jo xxxx

      4 Sep 2016

      THANKYOU Jo ??????

    4 Sep 2016

    Awww Sally, bless you. Have you heard of ? He’s a fantastic bloke in the states who is documenting beating cancer around the world. The truth and message of how best to heal cancer is getting out. Despite old school oncologists. Many many people finding healing without chemo. Xxx

      4 Sep 2016

      Hi Julie, I haven’t heard of him but will investigate ! I completely believe that the body can heal itself (I’m not sure I’d be brave enough to try) but I think we can help heal ourselves given the right information, and I believe we can protect ourselves too. I’ll look in to your link, thankyou xxxxxx more and more people are believing this aren’t they xx

        4 Sep 2016

        Yes, he has video after video of people all over the world who have healed every form of cancer there is. He had colon cancer in his twenties. I follow a lot of his stuff for prevention and because I have recently shattered my elbow and want to do everything I can to get myself healed. Doctors are not taught nutrition in med school, it’s crazy. Anyway thought I’d mention him maybe check him out on YouTube. No ice skating for me for a while 🙁 xx

          4 Sep 2016

          It’s like the oncologists don’t accept that the nutritionalists exist. Surely boosting your immunity by eating the right foods, limiting sugar and making sure your body is alkaline, must help ? Have you discovered @loveandwheatgrass? Her story is inspiring xx crumbs! Look after that elbow!!! Xx

            4 Sep 2016

            Hugs xxx

    Sarah Booth
    4 Sep 2016

    Oh Sally,you have all been through so much! Your blog is written so well and it was a very informative read. Big hugs to you all and much love being sent your way? xxxxx

      4 Sep 2016

      THANKYOU ??

    4 Sep 2016

    Sally, I only know you from Instagram… And of course following every single blogpost since you announced your blog on IG.
    This article is brilliantly written. Raising awareness is so important and with your lovely (written) voice, you definitely raised awareness.
    All the best for you and your family! xxx

      4 Sep 2016

      Vera, thankyou so much for taking the time to read it and comment, I can’t get over the response I’ve had !! You’re so kind ?? all the very best to you and yours, too xxxxx (I love that you like my written voice, I hope you can ‘hear’ it in your head as you read. I met a lady last week who says I sounded exactly as she imagined! Isn’t that funny! ) ??

    4 Sep 2016

    You truly are a wonderful person Sal, that was moving & uplifting, so proud of you for the strength love & support you have given to Gav. I knew you had it in you ? xxxxx

      5 Sep 2016

      Couldn’t have done it without you picking me up and pushing me on, and looking after me Rach xx

    Lynne Worsfold
    5 Sep 2016

    OMG Sally what an awful time that must have been for you all . I’m so glad that you got through it and Gavin’s doing so well – he’s very lucky to have you by his side ( but I’m sure he knows that ! ) I read your post from top to bottom – so well written and informative , such a reassurance to anyone else going through a similar experience . Lots of love and hugs to you both xxx PS will order my kit today ! ?

      5 Sep 2016

      Awwww Lynne, thankyou ?? lots of love to you too xxxx been toooooo long !! X

    16 Sep 2016

    This was a great post. I’m so relieved your Husband is doing so well. Very informative about the difference between incurable and terminal. I’ve had my fair share of consultants dropping unexplained bombs. Not funny! Can I say though that I did chuckle when I saw the purple infusion chair and thought it could have come from your house ?

      16 Sep 2016

      ?thankyou so much xxxx (the chair, might nick it…?)

    18 Sep 2016

    Hi, I’ve stumbled across you on Instagram, read just one post and it’s resonated so very strongly. Gosh you explain things well – The Freefall Weeks – yes I know those. My husband was diagnosed with very aggressive, kill you in six weeks and he’d certainly has it six, acute myeloid leukaemia when we were 21. He had no white blood cells, very little red (a big heart, apparently, was the reason he hadn’t passed out) and 70% of his remaining “blood” were leukaemia cells. He found out by chance when he went to the doctors complaining about a rugby knee injury.
    We heard death. More than once. In capitals. By 25 they said. Worst outlook, genetic mutations…I googled. Yeah…bad plan.
    Anthony Nolan saved his life, Macmillan saved my sanity. He had a bone marrow transplant and twelve years later he’s pretty darn well. (Reaches for wood). We have what we call “The Nuking Niggles” from the total body radiation but it’s nothing that bugs us. The clarity, like you said, that this sort of situation gives you is astounding. We may be regarded as old beyond our years in some ways – but gosh we’ve made sure we are happy and have lived.
    We will forever be grateful to his donor. Anonymous, male, darn good stem cells. We’ve written and thanked him but it never feels enough. He gave him life. I mean seriously…no fancy electrics, sports kit or socks wrapped under a tree will ever top that.
    Anyway, I wish you, your husband and family all the best on your journey. Thank you for continuing to raise awareness. Rx

      19 Sep 2016

      Crumbs that’s terrifying – I can’t even begin to tell you how relieved I am that the transplant was a success and you’re 12 years down the line. I have a deep seated fear of AML as my uncle died within 2 weeks of diagnosis (25 years ago) and then the village doctor died of exactly the same, literally over a weekend. He thought he had flu and did his own blood test.
      I have since found out that there are 10(?) different sub types of AML ? Is that right? Anyway, it’s bloomin FANTASTIC to know you can survive it! And thrive!! I’m sure it’s not been easy, and every little thing wrong makes you scared again. G isn’t feeling great this morning and I’m wildly seesawing between, he’s fighting a cold, or its back. I know it’ll pass, and I think I’ll call stuff like this, the Nuking Niggles – that’s a great name !
      Thank God for stem cells and people who know what to do with them, I say .
      THANKYOU for leaving a comment and all the absolute very best to you, too xxx

    Julie Dow
    29 May 2021

    Such a well written inspiring story Sally.
    I’ve followed you for a while now after having a Stem cell transplant myself for 2nd time of non Hodgkins Lymphoma, I was fortunate to be able to donate my own stem cells.. for anyone considering donating it is painless other than the cannula being inserted with is nothing .
    I’m 18months post SCT now and like you said Sally grateful for life itself and the important things family friends and the most amazing people who create these treatments and who care for you whilst you go through your journey.
    I wish your husband continued good health and you and your family .
    Your doing a great job of highlighting and making people aware of SCT as I like most hadn’t really given it much thought until I needed it to save my life.
    Best wishes
    Julie x

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