Sara’s ALL Diary – Part 2

1. Hospital Admission

We are admitted. We turn up to the hospital with our suitcases and up we go to our new home for the next month. We are like Year 7 students on the first day at school, hesitant and unsure of protocols, but desperate to please and not say or do the wrong thing. We sit quietly on the bed and smile at everyone who passes. Soon I am taken to have the PICC line fitted. The doctor in charge doesn’t really address me as he is conversing with the nurse, which I find disconcerting, as an explanation of what is happening is reassuring to someone like me who likes to know things! I lie on a bed, and they cover my left arm and face with a surgical blanket. This is a relief as I definitely don’t want to see any of the procedure, even by mistake. My arm is swabbed with alcohol (I later discover that it is orange) to clean it, and then I have a local anaesthetic. The doctor then guides the tube in through a big vein using an X-ray machine to sit it next to my heart. Several small tube heads are left hanging outside the dressing above my elbow so that fluids can be administered and bloods collected. It is completely painless and done in about 10 minutes.  
Then it’s back to my bed where almost immediately the nurses descend to take at least half of my bodily blood. Duncan stays the night, and I don’t sleep very well because I have already been started on steroids, and I am nervous to bend my left arm and squash or pull the PICC out by mistake.

The next day, begins properly at 6am when the trolley with the test tubes for the blood returns. Another arm fully delivered, I have a little paper cup of pills to take alongside breakfast, including lots of tiny white steroid pills an some pink and orange ones. And this is before chemo even begins! 

Nurse Robin comes over with the latest information from the bone marrow aspiration last week. It mostly seems like positive news, although I am hesitant to believe it. The genetic strains of the cancer which have come back so far are good rather than aggressive. There is one exception (“Don’t google!” advises Dr Kate) but she explains that although it is a red flag in other cancers, they aren’t sure what role it plays in leukaemia but it doesn’t seem to be as significant, and I don’t have much of it! There are still results to be returned, but it’s looking positive. No Philadelphia cells, it’s ALL not AML and Type B rather than Type T. Dr Kate says that because of my age, they think a stem cell transplant might be the way to go, but then says I could go into remission at the end of the first month of treatment if it works, so that could be a way off. 
Nurse Robin explains the treatment plan they have put together for me, starting with chemotherapy next Monday. Nurse Robin says that I will almost definitely lose my hair within six weeks or so. But I tell everyone so that THEY aren’t shocked or blind-sided by it.

2. All about Steroids

The day I am admitted, I am given 5 tiny white pills in the early evening. These are the high dose steroids I will take until the chemo can start. I am warned that my sleep might be broken because steroids can make you high and hyper or depressed and weepy by turns, and I’ve just taken a load of them right before bed!

The next day, however, I decide that if anyone tries to wrestle my steroids away from me, they will do so at their peril. I already love them. They make me feel like my optimistic, positive and energised self of old.

I stride purposefully around my room for half an hour listening to a podcast, holding tiny 1kg weights and then head out into the ward garden to walk its length for 15 minutes in the warm sunshine.

There are times now, when I want to run away from my life. This is a new sensation for me. I’ve always been so grateful for everything I’ve seen, done and experienced. I get periodic feelings of betrayal by the body I thought I could count on and am outraged by them.

The end of my first five days in hospital, Nurse Mariia knocks on the door. A porter appears behind her with a chair. ”You need to go for a heart ultra-sound,” she announces. This is news and it knocks me off my perch a little bit. The unexpected makes me nervous in case it means something awful has happened that I don’t know about. They tell me I have to go to another hospital, so I put on my coat. The porter offers the chair. “Can I walk?” I ask. “I’d prefer the exercise!” The porter looks surprised but acquiesces. Another nurse walks past me and Duncan and comments, “Here they come, the happiest couple in the hospital!” It lifts my spirits in the face of the unknown.
We go to the lift and don’t get in because there is a young man in a bed, too weak to lift his head, with his mother standing by his side. I find such sights incredibly discomforting because that could be me next week. It is sobering to witness such suffering and parental helplessness, but the porters are marvellous and keep up a stream of consciousness positive chat which reduces the heartache showing in the silence.

The young medic tells me carefully that the ultrasound will take about 10 minutes, and he is looking at and measuring all the chambers of my heart in order to get a base-line reading ahead of the chemo starting, so that they can track and monitor any changes.

3. My first bone marrow biopsy

I was scared in the face of my first bone marrow biopsy. I don’t like needles – or pain! My doctor kindly suggested that I might like to meet a patient of his, who could perhaps reassure me. And so, my friendship with Chen started. When the nurse asked Chen if he wouldn’t mind talking to me about the procedure, I could see him nodding vigorously on the other side of the partition from where I was sitting in isolation. A slight figure in his late 20s, sporting a mask like all of us, and full of energy, bounded into the room. He had a bandage on the side of his neck, protruding from under his mask, but other than that, there was no tell-tale sign of any ill health, such was his bounce and positivity.

Chen talked me through what would happen with the biopsy: a needle inserted near my hip, from the back, 20 minutes of feeling as though I was being drilled from the inside, but no actual pain, just some discomfort and a bit of soreness later as the wound healed. He was right on all counts.

We swapped numbers and I sent him a text later that evening to thank him for his reassurance. A few days later, on the day of my biopsy, I had another text from him. “I just wanted to send you a warm message and let you know I’m thinking of you,” he wrote.

We’ve stayed in touch. He is an inspirational figure to me: so full of positive energy, advice and kindness. He found the chemo challenging and was taken aback by the ferocity of the nausea that came with his first dose. But he dispenses kindness as readily as advice.

The day before my first chemo session, which I was anticipating with mounting nervousness. I send Chen a photo of me in the sunshine and ask how he is doing, and if he has any advice ahead of my first round. Immediately I can see him typing. He tells me that his second chemo session has gone so much better than his first and that he is almost onto the third. Even better, his stage 3 tumour has shrunk and is continuing to heal. His recovery is going better than he could have predicted. I’m thrilled. He advises me to eat a rich breakfast before chemo, because my appetite might be diminished afterwards. He says to keep eating fresh fruit, drinking lots of water and to surround myself with my loved ones for support.

“Your first session is always an opportunity for your body and doctor to learn and adjust for the best possible treatment” he advises over the airwaves. “Take care and keep shining with your positive energy and uplifting spirit.” I could say the same to him.

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 Tuesday 27th May which will be focused around her chemo days.

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.