by Ruth Wawszczyk

I approached Manchester. My stomach churned at the thought of the week ahead. I have a very rare form of cancer called ‘Anaplastic Large Cell Lvmphoma’ and every two weeks I have to travel to Pendlebury Children’s Hospital for a six day course of gruelling chemotherapy. This was my sixth course of therapy.

It was quite late - 9.00 pm, so there was no difficulty in parking. As I got out of the car. I glanced up at the hospital building. It was looming down on me like a giant. It held all the memories of the past few months — some good, but most, bad! — CT and MRI scans, bone marrow tests, biopsies of different parts of my body, soaring temperatures, painful, enlarged glands, boils which within hours needed intravenous antibiotics, ulcers which spread right through my digestive tract We unloaded the car and carried all my bags into the hospital. (It is surprising how much luggage I end up bringing — even my own pillows as the hospital ones are like planks of wood!). We walked down the long, ancient corridor, passing the fish tanks, the café, the reception desk, the intensive care unit, Liebert Ward. Borchardt Clinic and all the other wards until we finally reached Borchardt Ward — the end of the line! My Dad pressed the buzzer and announced my arrival:

“Ruth Wawszczyk”. The door was unlocked for us. My incarceration had begun!

Straight away, the smell hit me. It is a curious smell - sickly sweet - nothing can be likened to it. We walked down the ward. We passed the children on the open ward, many asleep with mums and dads sitting, watchful and alert, on armchairs near them. We entered Cubicle C — the smallest cubicle on Borchardt Ward. It is just big enough to hold a small cupboard and chest of drawers, two bins (one for clinical waste and one for domestic waste), a handbasin, a chair and a fold-up camp bed. High on the wall is a T.V. and video and aqua-green blinds hang down above the window with oxygen masks and other equipment hanging on the walls. Finally there is the patient’s bed — very firm to support your back (!) and covered with a pink (empty) duvet cover and white sheets. Oh! and, of course, the dreaded drip stand! This was to be my ‘home’ for the next six days, but one would certainly never describe it as ‘home from home’!

During previous visits to Cubicle C, I had not even been allowed the privilege of keeping my door propped open for fear of my infection spreading to children who are on the open ward. (Besides suffering from lymphoma, 1 had developed an MRSA infection in my hickman line - the line attached to the veins in my chest through which all my chemotherapy drugs, hydration and other medication were infused). Tonight I was really lucky — the nurse couldn’t find a commode for me and so I was able to ‘sneak’ to the toilet! I considered this a tremendous adventure at l0.00 pm when all the lights were out — a final taste of freedom before the chemotherapy began!

The nurse on duty that first night was Claire. Like all the other nurses on Borchardt Ward, she was always very friendly and reassuring. At about 10.30 pm she wheeled in my drip stand to which I would remain attached for the next six days. Whilst most children need only two ‘ivacs’ for their treatment, I had so much chemotherapy that I had to have four attached to mine! (An ivac is a special piece of medical equipment which controls and monitors the flow of hydration and chemotherapy into my Hickman line — the line I mentioned before). For the next six days, my ivacs would flash and bleep non-stop. The monitors read ‘down stream pressure’ or ‘air in line’ or, more commonly, ‘infusion complete’ and ‘bottle clamp’. Each time a ‘message’ appears the ivac bleeps loudly and a nurse will come scurrying in to attend to it. The ivac is no respecter of time either and continues to bleep and send out its messages both night and day. When it is not bleeping, the little screens show the rate of infusion and the pressure of the relentless flow of toxic chemicals and hydration fluids. At 11.00 pm I began my hydration ready for my first dose of chemotherapy the next morning.

During the night, the auxiliary nurse, Jenny came in at regular intervals to read the drip levels and to do my ‘obs’ — temperature, pulse and blood pressure. As usual, I could not sleep that first night. My drip equipment made an annoying sound and an ambulance outside my window disturbed me at about 3.00 am. I was still awake at 6.00 am when Jenny came in to do another set of ‘obs’. My heart was bothering me too, as it was pounding hard all night — I could hear it in my ears like a soldier marching on my pillow! — and I knew that it would not be long before my blood pressure would begin to creep ominously upwards. My hydration infusion was also starting to take effect and I was up on the commode every half hour or so. My poor Dad had to rise each time too as he had to record all my liquid input and output in my medical file even in the dead of night!

Next morning, I took a nosey peak at what Claire had written in the Nursing Evaluation section of my file: “Good night. Obs stable. Dad resident with Ruth”. I then read the treatment protocol for the coming six days. What a lot of drugs to pump into my poor body — vinblastine, ifosfamide, methotrexate, cytarabine. etoposide, cyclophosphamide, doxorubicin...! Even the names were enough to give me nightmares! No wonder my hair had by now almost completely fallen out and was everywhere — on the pillows, the sheets, the floor.... I dread to think what my friends at school would say if they could see me now — even I found it hard to believe that this was really me! (I wonder — could it be a deliberate oversight that there is no mirror in Cubicle C!)

By 10.00 am my first bag of chemotherapy was beginning to course into my veins. To take my mind off it, I decided to do some ‘painting by numbers’ — it was a scene in Venice and how I wished that I was there! Cubicle C was beginning to close in on me. I felt like a leper. I was not allowed to wander up and down the ward like the other children. I was not allowed to go the playroom or the teenage room. I couldn’t even go and have a bath or a shower. It felt as if I was serving a prison sentence — as if my life was being taken away from me rather than being given back to me!

Two of the doctors came in to check that I was alright and not feeling nauseous and to see if I had any questions they could answer. Dad and I had nicknamed them ‘Bill and Ben’. One was tall and clumsy and the other much smaller and always appearing in funny character ties! However, they were certainly good at their jobs and very caring.

Time dragged on. My named nurse — Jo, today — came in at regular intervals to check the ivacs and to change the bags of hydration and chemotherapy drugs. In Cubicle C, the passage of time was measured not by hours and minutes but by the number of infusion bags to be pumped into me!

That afternoon I had a visitor. It was my auntie. At least she had brought me some Kentucky Fried Chicken for tea! Hospital food left much to be desired — especially as the chemotherapy had a strange effect on my taste buds even when my mouth was not too sore to eat at all because of all the mouth ulcers. After past experience, my Mum always sent me into hospital with plenty of ‘supplies’ to tempt my appetite but the occasional treat like this was always welcome.

By 8.00 pm the main lights on the ward went out. It was then that one of the few advantages of Cubicle C was apparent — I could keep my light on and even watch T.V.! However, after my last sleepless night, I was so tired that I actually fell asleep by 9.30 pm — at least for an hour or so before the effects of the hydration continued to take their relentless toll.

Wednesday mornings always began early for me — tea and toast at about 3.30 am and then ‘nil by mouth’ until my routine anaesthetic. This week I was not only to have my regular infusion of methotrexate by lumbar puncture (aimed at preventing the lymphoma from spreading to my brain), but also a bone marrow biopsy. At least this meant a short respite from Cubicle C as I would be wheeled across the ward to the treatment room, but it was a long morning with nothing to eat or drink as I was last on the list of children because of my MRSA infection. At last. however, it was my turn and I lay gazing up at what seemed to be a multitude of faces — nurses, doctors and the anaesthetist — before the effects of the anaesthetic bore me a way to blissful unconsciousness. How I wish that I could fall asleep so easily every night!

“Ruth. Ruth — are you awake now?” I could vaguely hear my Dad’s voice luring me back to consciousness. As I opened my eyes, the room was spinning around me like a merry-go-round and it took several minutes before I fully came round. The anaesthetist removed my oxygen mask and I was wheeled back to Cubicle C where I was to remain, isolated again from the rest of the ward, for the next four days of my chemotherapy. Hopefully, lying flat for the next few hours though would prevent a recurrence of the awful spinal headache I had suffered from for days after my last lumbar puncture!

My consultant, Dr Wynn came to see me late in the afternoon. “Hi Ruth! How are you doing?”, he greeted me in his usual way as he sat down on the bed beside me. (Dr Wynn was always ‘upbeat’ when I saw him and filled me with confidence that I can win this ongoing battle!). He had come this time with the great news that the bone marrow condition which had been triggered by my lymphoma —haemophagocytic-lympho-histiocitosis (!) — had finally cleared and my bone marrow biopsy was clear this time! I felt as if a huge weight had been lifted from my shoulders and I glimpsed a light at the end of this dark tunnel at last. It somehow made all the awful side effects of the toxic drugs being pumped into my system seem worthwhile and 1 began to look up at the ivacs with a renewed sense of optimism. It didn’t make the cell-like conditions of cubicle C any more attractive though!

And so the days chugged slowly on and I counted off the bags of hydration.

On Friday, many children were discharged and I felt as if I was being abandoned! How I wished that it was me leaving. I began to worry that I wouldn’t be allowed to go home tomorrow. What if my blood pressure soared again or I suddenly spiked a temperature. Panic began to set in!

Saturday finally arrived — just this final day to go! By this time I was desperate to leave. The sense of isolation from the real world held onto me like a vice. Iwas counting the hours: thirteen, twelve, eleven, ten…seven…three...two...ONE! Mum had all our belongings packed and ready. My temperature and blood pressure were checked for the final time (the relief when they were within acceptable limits!). Dad and my brothers arrived ready for the drive home to Lancaster. I watched the final bag of chemo. drip through. Just one bag of hydration to go now. I was itching to go and willing it to drip through the line more quickly. The ivac finally beeped: ‘infusion complete’! The nurse on duty, Lucy, flushed my lines with saline and disconnected my Hickman line. It was as if someone had just released me from my shackles! The door of Cubicle C was opened for me to walk through and I practically ran down the ward. A sense of freedom overwhelmed me and I put Cubicle C and all it had come to symbolise behind me — at least for the next two weeks!

Postscript

It is now seven months since I completed my last intensive, six day course of chemotherapy in Cubicle C. CT scans and bone marrow tests carried out at that time thankfully showed no signs of active lymphoma! By that time, though, my hair had completely fallen out and my body felt as if it had been ravaged by all the drugs which had been pumped into it. At times it seemed as if the treatment regime for cancer was actually far worse than the disease itself and there were times —especially in the dead of night — when I wondered if my body could survive the effects of it all. (All this at a time, too, when all my friends were busy starting work on their G.C.S.E. courses and happily planning their futures!). However, my kidneys had survived even though my Mum and Dad had been warned that because of the intensity of the treatment regime, I could have gone into kidney failure and would have needed dialysis during the treatment. (Perhaps all the bags of hydration and all the litres of water I had forced myself to drink had been worthwhile!). Since the main chemotherapy ended, I have been receiving weekly injections of vinblastine and whilst the side effects have obviously not been as severe, it has still taken its toll on my blood counts and caused lots of aches and pains in various parts of my body and I wonder whether my once-favourite foods will ever taste the same again! My life still revolves around Friday visits to Pendlebury Children’s Hospital for these injections, regular check ups and scans — and will continue to do so, I am told, for many years to come!

Perhaps what is hardest — or even impossible — to put into words. however, is the huge psychological impact which the past twelve months have had on me. I am sure that no one ever really thinks that cancer is going to be a reality in their lives —and it is certainly not what one expects as a teenager. For months I felt as if my life was being taken away from me and all I wanted was to ‘be normal’ again. In the early weeks in hospital, I had to get used to a complete loss of privacy — not only was every part of my body under scrutiny but I was also so weak that I needed help with even the most basic washing and feeding. It is very hard, too, to see other children suffering — and to know many who have not survived the battle (I will never forget the bravery of children like Olivia, Heather, Isabella, Rebecca, Amy, Belinda — and their laughter and smiles in the midst of indescribable suffering). I am glad that twelve months ago I did not know what I now know about cancer — if I had, I think that I would have found it much harder to face the battle which lay ahead.

I have also found it difficult to talk about what I have gone through and what I experienced. When I went back to school, my friends were very glad to see me again but it was as if a curtain came down between us when I began to try to share the reality of the illness with them. It seemed that others had been advised not to “hassle” me with questions about what I had been through — all very well meaning but not really what I wanted inside. I wanted to be able to speak about life as a cancer patient and life on Borchardt Ward. I know that I have been changed by what I have been through and that I am a different person now compared to a year ago and yet it seems that everyone expects me to go back to “normal” as I was then. My priorities have changed radically as a result of having Anaplastic Large Cell Lymphoma and every day is now very precious to me — a gift to be treasured and used to the full!