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 Lymphomas.org.uk  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.)

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!)

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 (sally@firedrocks.com)
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
Love 
Xxxxxxxxxxxx