Our Story. Blood Cancer

Symptoms to be aware of and all about stem cell transplants

Hello and happy Sunday! This is not the post I thought I would be sharing this week, but I have had a sudden influx of new subscribers and some messages from people that have had a recent blood cancer diagnosis, So I felt that this was a really important post to share. Please forgive me if you have been with me for a while and may remember this post from my blogging days.

This is a post about us, and what happened 10 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. - I will leave the below almost exactly as I wrote it, 8 years ago.

Exactly 2 years ago, Gav was complaining of a sore tummy. His family history is bowel cancer, so he is super vigilant with the colonoscopies. The last one being clear.
He seemed to have had a sore tummy on and off for months and months but he’s a man who doesn’t like bothering the doctor. He was also more tired than usual, and I was worried.
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 so clearly remember it and it makes me cry even thinking back to it, 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 professor (who had told him that he would wait after his last patient if Gav felt he wanted to come back in with me, so he could explain the results to both of us. I will be grateful to that doctor forever, for that act of kindness) that Gav had ‘a lymphoma’ but they weren’t sure what type – so he’d need a PET scan, bone marrow biopsy, and lymph node biopsies and all sorts of tests, 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 of blood cancer and some aren’t curable 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?! It didn’t help that years before, my uncle had been diagnosed with leukaemia and died within 3 weeks of diagnosis and that was my very limited experience of blood cancer. Utterly terrifying. NGL
Christmas was awful. We hadn’t told the boys as there was nothing really 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’.

If you are mid free fall, my heart goes out to you. Just. Keep. Swimming.

As weird as it sounds, there is a relief to getting your diagnosis, because it comes with a plan of action and that terrible feeling of being out of control seems to turn around to taking back some kind of control and it feels better. Granted not the better that anyone has pre cancer, but better than the terrible free fall in t the abyss of not knowing.

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 ! 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 in the shed in the garden 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 4 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. Each appointment since had me struggling to even to find a strangled voice to speak without crying, both of us feeling like we can’t ask questions and pretty miserable and scared really.

2 years on and we understand that although it’s incurable, it is VERY TREATABLE . And stage 4 FNHL is not always as scary as it sounds. Most people are diagnosed at this stage and some don’t even need chemo, or indeed any treatment at all straight away. (Unlike every other cancer I can think of)

I struggle to understand why he didn’t rescue us by telling us that incurable does NOT always mean terminal. It was the Macmillian nurse, who cleared that up. 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 lay in wait for people like us, and rescue them during their tsunami. Because cancer feels like a tsunami.

It would be years later when I eventually found my voice and spoke at a blood cancer convention in a room containing patients and a lot of medical professionals, where I talked about the words ‘incurable and terminal’ and explained our story and how deeply the use of words during diagnosis had affected us, and how, if we had have had the difference explained on that awful day, that we might not have left the appointment in tears and it might not have had such a detrimental affect on our mental health, especially Gav’s. .. maybe. |We both felt so happy when a doctor came up to us to tell us that he promised to take my words on board when giving a FNHL diagnosis. A bit of closure perhaps. Someone else not feeling as scared as we had felt, hopefully.

So here’s a bit of info
Hodgkins lymphoma is largely thought to be curable, and it was discovered by Dr Hodgkins.
Non Hodgkin’s lymphoma (in particular Follicular) is largely not curable (but it’s very treatable, and treatable for many many years) and wasn’t discovered by Dr Hodgkins. That’s the difference between their names. Loosely.

SYMPTOMS of FNHL/ blood cancer in general

…can include a lump, usually felt in your neck, armpit or groin because your lymph nodes are nearer the surface in these areas and can be more obviously seen or felt. Sometimes you might feel a lump in your tummy. Extreme fatigue, back ache, weight loss, unexplained bruising- anywhere on your body, even in your mouth, itching, night sweats and or frequent infections that you can’t seem to shake off. You may feel flu like. You may have tummy pain, and or a cough.

Or, confusingly, for FNHL, you may have 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 LYMPHOMA ACTION 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’s active. If it’s not 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) At risk of being fatal if not treated correctly at the time of an attack, but otherwise, on with your life. (Hard to get your head around if I am honest)
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.

We are really lucky in the UK because after the initial 4 infusion treatments, it can be administered as an injection. They like to find a nice squishy place, so they chose his tummy. The fact its an injection, a ‘sub cut’ rather than using a vein makes the hospital stay much quicker. 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!

(2025 update, it may be given over a different time frame now)

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. 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.
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 !

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! Yay. (Carrying an organ donor card is a different thing altogether. To donate your stem cells you do NOT have to die first. Excellent news)

HOW DONATION WORKS

If you’re lucky enough to be a match for somebody, you donate your blood from one arm, the stem cells are extracted, and your blood 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 job️. Your body will regenerate your stem cells within a couple of weeks.

The patient will have undergone extensive chemo to ready their body for the transplant. It is harrowing for them.

In a very teeny percentage of cases, and this is often to save the life of a child, the stem cells might need to be extracted from your hip area 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. 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! DKMS and Antony Nolan both look after you so well, you will not be out of pocket either as travel and accommodation are covered. Your health and well being are treated as just as important as the patient who you are matched with. It is a well oiled machine and you will be in excellent safe hands. And you are treated like an absolute hero, because you ARE a hero.

The REALLY cool thing is that should all go well, your patient’s blood type will switch to YOUR blood type during the first 100 days after the transplant. You will have donated your healthy immune system in those stem cells. A baby immune system, so box fresh that your patient will need all of their childhood vaccinations again.

After 2 years, all being well, personal details can be swapped and you can meet each other. IMAGINE. Goosebumps.

…update from 2025, our eldest son was called as a potential match!!! He was emailed on 2nd Jan this year. 10 years to the day from his Dad’s diagnosis. Spooky or what.

The nurse visited him to take bloods and we waited. And waited and waited. Very sadly we had an email saying that the patient was no longer suitable for a stem cell transplant and I believe that is probably code for ‘the patient died’ which makes me want to cry. So near yet so far and Jake was gutted too. The magic was ready but sadly some forms of blood cancer just move so fast that the patient can’t be saved. Horrific and so so sad.

Anyway, if you’re still with me, we are so incredibly grateful 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 )

You can have 1000 problems, until you have a health problem and then you only have one problem.

His tummy pains never went away and everyone agreed it probably wasn’t the cancer causing them. So it seems we discovered his lymphoma by accident. FNHL is often discovered as a result of a scan looking for something else. This is why it is often discovered at Stage 4.

If you’re diagnosed with an incurable blood cancer like Follicular NonHodgkins Lymphoma, please remember the difference between incurable and terminal.

Know too, that the prognosis for this particular type of blood cancer is generally very positive. Remember that statistics on old information dredged up online can be a load of rubbish and talk to people who know, like your team. 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 shark called Cancer. So we have the bus AND the shark to dodge.
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.

We are now 10 years on from diagnosis and we saw his wonderful and kind haematologist last week (the dr I still can’t quite forgive, has retired now and his replacement … well she has her wings tucked in her knickers I am certain. She is a real life angel and we could not feel more listened to, reassured and confident when we leave and we are beyond grateful) and we have been signed off for a whole year. Quietly leaving the hospital, no bells or whistles, and we can always call if we need to, but a whole year, how amazing is that.

Thankyou from the bottom of my heart if you got this far. Step up for your medal

Back on track next week

With Love

Sally xxx