In February 2025, Sara was diagnosed with Acute Lymphoblastic Leukaemia (ALL). Facing a challenging journey ahead, she has chosen to document her experiences—both for herself and to support other patients and families navigating the same diagnosis. Her previous diary extract can be found here.
Chemo Day dawns. My first. The nurses arrive to take bloods at 5.30am and then they hook me up to the first of my infusions. The day is mainly about waiting for something to happen. A nurse arrives to hook me up to the pre-meds. These are anti-sickness drugs which will take about 45 minutes to infuse. I have requested every possible medication for this, as I’m emetophobic and feeling sick would make everything so very much more unbearable.
I am then given 8 steroids to take orally, before they leave me alone for a while to talk to Dr Kate. I ask her, as I have everyone, what I can do to support the success of this treatment. “Nothing” she tells me. “There really is nothing you can do except give in to it. There is no addition to the medication which will make any difference.” She tells us that steroids are still one of the strongest lines of treatment for Lymphoma and it is a good thing I have reacted so well to them, as they can make some patients feel terribly low. I ask about dietary supplements. She doesn’t want me to take anything, not even Vitamin C, in case they disturb the balance of the drugs she is using.
Four nurses carry the 2 chemo cocktails which I will have between them. The drugs will only take about 20 minutes each to be delivered, but they are all in the room just in case of adverse side effects. They watch each other, they watch me, and they watch the drugs being administered, all whilst seemingly casual and chatty. At the end of the process, I tell the assembled crew that I am waiting for what will happen next. “Oh no, don’t worry,” they chorus. “That’s it! Nothing else will happen. And next week it will be like a routine, so you won’t be so anxious.”
Dunc and I walk around the garden, desperate to feel the sun on our faces and walk off the emotional stress of the day. We chat it through. Dunc truly is my rock.
“How would you rate the day?” we ask each other. It’s a 4 out of 10 from me. Not so much for the treatment.
Instead of waiting helplessly for things to happen to us, we just adopted our usual routine. I went out into the garden for 45 minutes and asked the nurses to come and find me when they were ready.
Then Dr Kate arrived, dispensing her glorious calm wisdom. Ominously, I have been reading and therefore had questions. I had read about a new clinical immunotherapy trial (UKALL15) being run by Prof Adele Fielding and wanted to know if I might be eligible. Kate says that I just slipped into hospital after it had been launched, but that they hoped to get me on it for the next round if appropriate. She said that stem cell transplant is still my best hope of a cure, but that immunotherapy is leading to promising results in the patients it is being used on. I am on the UKALL14 treatment, which was the last clinical trial and Kate explained that each trial is incorporated into treatment as standard practice as it is rolled out. It was fascinating seeing her becoming so animated about research, and so positive about possibilities for the future.
I don’t want to eat much on Chemo day, is what I am learning. I’m too jittery and nervous about how I might react. They arrive at 1pm with the Pre-meds, which take 45 minutes. And then the chemo is delivered pretty much straight away, by one nurse who stays with us to deliver one by hand and then disappears for the second infusion. It feels much more normal and day to day, like every other day, and it only takes 90 minutes as opposed to 3 hours last week. The chemo makes me feel internally slightly shaky, but otherwise OK. The day? 8/10 this time!
As I went outside, Dr James went past. “We’ve got it scheduled in for about midday” he told me! “I’m so nervous,” I confided. “Don’t be!” he said. “It’ll be fine!”
I had been told – or read – that the intrathecal (or lumber puncture) was a 20-30 minute procedure with 2-3 hours lying on your back afterwards. James debunks these myths straight away: 1 hour on your back and probably only 10 minutes. Then you can go about your day if everything is OK. Note to self: don’t read too much, and listen to your Doctor! I am squeamish about needles and spines (amongst other things) but Dr James is brilliant. I have to sit on the edge of the bed, curled over my knees. He carefully feels my backbone, looking for a space and then he marks it with a pen. Local anaesthetic goes in – that’s the most painful bit. Then once that is numb, a bit more anaesthetic further in for the chemo needle. He takes out a small sample of spinal fluid for checking, carefully injects the chemo drug and it is all done! Far less uncomfortable than the bone marrow biopsy. I feel jubilant.
James explains that 10% of people have a bit of a headache afterwards, which they can give paracetamol for, but just to lie still and relax for an hour until the dressing is checked.
Adrenalin high after quite a big slump yesterday, during which I felt flat and exhausted. I was dreading today if I felt like I did yesterday, wondering how I would get through it, but I wake up feeling positive and in an, “let’s get on with it” kind of headspace. Even though I know what is coming, it is pretty relentless in terms of the waves of medications and ministrations coming in through the door. But I was glad of the steroids to give me some energy to get me through it all.
Lots and lots of pills to swallow, but this time the pre-meds which have been in bags of infusion before was a single pill, so I spent less time hooked up, which was a bonus.
Only 1 more chemo Monday in this cycle, with an extra new one thrown in toward the end of this week. One day done is one day closer to the finish line.
Nurse Consultant Robin came in for a chat, and as usual we had lots of questions for him. Things like: how long does the chemo stay in the body and how does it leave? What is it actually doing?
One of the Monday drugs is red, so your wee is red for a few hours afterwards, which is a little alarming, but that is how fast it leaves your body.
Robin explained the life cycle of a cell to us in extremely simple terms – it is born, it matures and it dies. But the cancer is impacting some aspect of each of those processes, which is why they use different chemotherapies to hit the cells in different parts of the cycle, and it targets every cell in the body, not just the cancer ones (because they don’t know precisely where they are!)
Robin added that the reason your hair falls out during this treatment, and why your mouth is badly affected, is because those cells have a faster life cycle than others, so they are impacted quickly and in a more prolonged way. I will eventually get some taste and some hair back! But hopefully the cancer will be gone for good.
It is fascinating stuff, and I am glad to know it. I like it when I can understand what is happening and why. It helps me to bear it.
Today marks my final round of Chemotherapy for Cycle 1 of my induction. 6/6 done. I am not sure what to expect, without the support of the mega steroid dose I am usually given but I am slightly nervous in case of an adverse reaction, which I haven’t had so far. I ask the Doctor what to expect, and she tells me that it shouldn’t be any different from how I have felt after previous sessions, the idea being that there are now far fewer cancer cells than there were at the start!
There is nothing to do now but wait… wait for neutrophils to rise by themselves after having been knocked flat by the chemo, then wait for a bone marrow biopsy and finally wait for great and positive results.
Sara is documenting her journey daily, sharing her thoughts and experiences as she navigates her diagnosis and what lies ahead. Over the next four weeks, she will continue writing, with the next diary entry set to be released on Friday 27th June.
Across the globe, someone is diagnosed with blood cancer every 27 seconds. In recognition of this, a new diary entry from Sara’s journey will be released on the 27th of every month, offering insight, hope, and solidarity to those facing similar battles.
Chief Executive James McLaughlin is lacing up his trainers once more for one final run, taking on his toughest test yet—running over 10 marathons in 14 days for a total of 270 miles with no rest days, running through 29 blood cancer centres across the UK where the charity supports through clinical trials networks
George Lineker, entrepreneur and long-time supporter of Cure Leukaemia, will once again take on the epic London 2 Paris cycling challenge this June, marking a decade since he first completed the ride in 2015, raising vital funds for Cure Leukaemia.
