You know how life rolls – everything seems to be going well, you’re in a “happy place”, life is great and couldn’t get much better – and then it seems to bowl you a googly which takes you by surprise and turns your whole world upside down.
My story starts in late 1991. I had just turned 20, had just started my second year of my nursing degree, and life was great. Nursing wasn’t a career I had thought about doing; my first choice would have been an English degree, but I thought that I had better job prospects in nursing – so I undertook a four-and-a-half year Degree if it meant that I could end up like Nurse Duffy or Charlie Fairhead on “Casualty”.
The course was tough, the placements tougher, but I was enjoying it. I had recently got a little Mini to get me to and from all the Hospitals I had to work in, and I had a large group of friends both on my Uni course and in general, so my social life was non-stop. In a nutshell, life was pretty good. In fact, if one song could sum up my life at that point it would be Queen’s “Don’t Stop Me Now”.
Late autumn 1991 arrives. I had a very heavy placement – both physically and emotionally – in a young chronic sick ward. The patients here were all under 50 and had very debilitating illnesses many of which meant that they were utterly helpless. As a result, there was a huge amount of moving patients – mostly using hoists, but sometimes with two nurses physically hoiking patients up the bed. In those days, many of the patient moving techniques that are banned nowadays through Health and Safety, were very much in use. So it came as no surprise that after a few weeks of working in this environment, I felt a dull ache in my sternum. I put this down to having strained myself whilst looking after my patients, and that eventually, probably when my placement finished, it would go away. I thought nothing more of it, and continued as I had been doing to the best of my ability despite being aware that this ache was hampering my practice a little.
Roll forward to spring 1992. Life was still “a blast”. I had had a term in Uni learning all I needed to know about Mental Health nursing to equip me for the next placement which was to be in a mental hospital. During one of my lectures, I had felt my neck a bit tense, so was giving it a rub when I felt a large lump on the right hand side diagonally down from where one’s “Adam’s apple” is. At first I thought it was just a swollen gland meaning I was in for some sort of infection, but then again it wasn’t sore like those glands tend to be. I felt otherwise healthy – the dull sternal ache was still there in the background – but aside from that I was much as I always was.
A week later the lump was still there, but slightly more noticeable. It looked like I had a rather large grape stored under my skin at the base of my neck. I was living at home at the time, so I told my parents who advised me to see the GP about it; I had had Glandular Fever two years previously, and maybe this was it recurring, but there would be no harm in getting it checked out. So I made an appointment and saw my GP a couple of days later; the outcome of which was that I was sent away from the surgery with the words “it’s a strange virus but I’ll prescribe you antibiotics”. Which was weird because I actually felt fine.
It was the week before my 21st birthday and my Mental Health placement arrived. I travelled the 14 miles to Bangour Village Hospital for my 2 month initiation into the world of mental illness. Although I had been extremely apprehensive about this, I thoroughly enjoyed it. Two things didn’t seem right though. I had completed the course of antibiotics my GP had prescribed, and the lump in my neck hadn’t gone away; and also the sternal pain, (which had been very much in the background over the past few months), suddenly got agonising. It was similar to the pain one gets when breathing through the mouth on a very cold day for a prolonged time, except worse. In fact the sternal pain was so bad I couldn’t put the car seatbelt on, as the pressure of the belt on my chest was very uncomfortable. My next rostered day off (which happened to be the day before my 21st birthday) saw me at the GP surgery again, this time seeing a different physician who immediately sent me to get a chest x-ray. From thence, things happened very very quickly.
That evening I got a phone call from my GP to tell me that the x-ray had “shown something”, and my blood sample was “abnormal” and that I was to go to the haematology clinic the next day. I had to go there via the GP surgery to pick up a letter the doctor had written to the consultant. He wasn’t sure, but there was a likelihood that I had some form of blood cancer. He didn’t want to scare me, but he was referring me to a Haematologist just in case. So that was it. My 21st birthday present was to be a scary hospital visit when I would be told if I had cancer or not. With this news, I cancelled the small do that my friends had planned for me – I had to be careful not to tell them why, but to think up another feasible reason – and spent the evening in a kind of blank.
My parents accompanied me to the hospital the next day, they were fantastic in their moral support. After what seemed an age in the waiting room, I was called through to the consultant. Now at this stage in my nursing career I had not come across “haematology” nor many of the terms used within this medical specialty, so I was as clueless as the next person – maybe that was a blessing! The consultant then proceeded to tell me that I was to go for a biopsy on the “node” on my neck – that would tell him what kind of cancer I had. The sternal pain seemed to be linked to this as well, and he was keen to know how long I had had it. Within the next couple of days I was back in hospital for my biopsy – my consultant wasted absolutely no time at all – the result of which indicated that I had Hodgkin’s Lymphoma.
I had never heard of HL before, except that a character on Eastenders had just been diagnosed with Non-Hodgkins Lymphoma and was dying. Was that the same thing? The consultant took his time to explain that HL was different from NHL, and had a better prognosis. HL was usually found in older people, he said – and treatment would be decided once they had done a bone marrow biopsy on me. The next day, on my placement, I told the staff my news. It turned out that one of the male nurses had had a brother who had died of Hodgkins several years before, but that he could tell I would beat it. This nurse ended up being my “brother figure” during this placement, always encouraging me, always looking out for me. The staff in the unit were all awesome – I will never forget how kind they were. One of the patients had crocheted me a blanket for my 21st birthday, I still have it.
Within a few days, I was back in the Day Bed Ward, this time getting what was the most painful thing done to me – that is, the bone marrow biopsy. To be honest, that was the most painful thing in the whole of my cancer experience. They put local anaesthetic into your back (similar to a lumbar puncture) and, using a syringe, they draw out some of your bone marrow which they analyse. This then gives the doctors a picture of how advanced the cancer is: Stage 1 being very early to Stage 4 being very advanced. My bone marrow result showed that my cancer was at Stage 2, and the haematologist prescribed me twenty fractions of radiotherapy (Mon – Fri for a month).
To be honest, these events sped by so quickly that I had no time to think about them. I don’t remember ever thinking of death or experiencing fear; I was going to be ok – I was determined I was – so I just felt like I was being treated for flu or some normal minor ailment. Other people seemed more worried about it than I was. My friends avoided me – they didn’t know what to say to me, or how to cope with someone their age with cancer; my parents and brother always seemed so strong, and never let their true emotions show. I wanted to carry on with normal life – still do my placements and go to the Youth Group I loved. This weird cancer I hadn’t heard of was NOT going to beat me. Even if it meant being radioactive for a month.
The radiotherapy itself was a blur. I lay down on this table and lead “blocks” (the radiographers called it a “mantle”) were placed above my organs so they wouldn’t get irradiated. Then I had to lie for a few minutes whilst this machine buzzed and zapped at the nasty cancer cells in my mediastinum. And that was it. Painless procedure, but it did make me feel a little nauseous, very tired, and also gave me a stonking fake “sunburn” on my neck, but that was it. It’s funny, but even now there are some songs that were popular at the time that I can’t listen to now without feeling “seedy”.
By this time I was meant to be on a Care of the Elderly placement, and in the month following my radiotherapy I got so shattered doing nothing, that I had to contact the Uni and cancel this placement. My Uni friends all clubbed together and bought me a lovely big cuddly toy and a card; my Director of Studies visited with flowers from the Uni Staff. I was also attending Jan de Vries’ homeopathy clinic, where a lovely doctor, Dr Tan, prescribed me a mistletoe concoction which had tumour shrinking abilities – so armed with that, and the radiotherapy, I was going to win this battle. Unfortunately, my Finals (which happened in Third Year) happened during this period of radiotherapy induced fatigue, and determined as I was to live life normally, I still sat them. Admittedly, I didn’t do as well in them as I had hoped – but I did my best. I was so tired that it was an effort to remember things, and I recall going home with the realisation I had “duffed” my exams.
At my follow-up visit at the haematology clinic a few weeks later, my consultant was delighted at how much the tumour had shrunk, and everything indicated that my HL had gone. The pain in my sternum was no more, and the gland in my neck had vanished. I had beaten it! It almost made me feel like some kind of superhero!
It was then that through the Lymphoma Association, I set up and ran the first and only support group in Edinburgh for Lymphoma and Melanoma patients. It took a lot of hard work, but it ended up a complete success – we had about 15 – 20 people each meeting. Through this group I met Karen, a lass a few years older than me, who had advanced NHL and was fighting for interferon treatment – as this was the last chance she had of hope. She invited me to her wedding – she looked so well at it despite her failing health – and sadly died a few months later. This made me realise how fortunate I was to still be very much alive. Shortly after that, I became hot news in the press – I had newspapers photographing and interviewing me for my story of hope (I appeared in several national papers) and even Prima magazine snapped up my story and dolled me up for a photo shoot at a local castle to accompany an article on me about my Hodgkins experience and work thereafter.
As is usual with cancer cases, patients get followed up for up to ten years after the diagnosis of cancer. I graduated with a 2.1 Honours Degree in Nursing (which amazed me considering how much I knew I had duffed up my Finals), and worked for a short spell in Oncology and then in Pharmacological Research. My consultant’s office was just two floors below my office and he would often come up to see me and check I was doing ok.
After one follow-up visit four years later, I was met at work by my consultant. This wasn’t usual, I thought. He called me down to his office where he explained that the bloods taken at the clinic a day or two before indicated that cancer, in some form, had returned. He wasn’t sure if it was a HL recurrence, or if I had developed NHL or leukaemia. I knew the drill, and I faced his next words with dread……yup, I had to go for yet another painful bone marrow aspiration so that the type of cancer and stage could be determined. This completely caught me off guard, as I was feeling absolutely fine – apart from a cough that I had struggled to shake off from a cold, I was feeling better than I had in years. No pain, no lumps. Was he sure?
The next day, I was back in for the old bone marrow punishment – yes, it was as sore as I remembered it, and an appointment was booked for me to visit the clinic the next Thursday where I would be told the awful truth.
I took what I thought would be 30 minutes from work, and slipped downstairs to the clinic that next Thursday. It turned out that I wouldn’t be returning to work that day, nor for several months afterwards. At the clinic I was told that my HL had returned, and this time it was concentrated in my lung (hence the persistent cough), and that I was to start chemotherapy right then. This chemotherapy would last six months. If after this time it had proved not to be effective then a stem cell transplant would be on the cards. I knew from my oncology nursing experience that patients who get that far only have about a year prognosis – but yet I don’t remember being “phased” by this – I beat it once, I thought, I sure as heck can do it again. The chemo I was to have was one injection and a battery of pills. This would mean my hair would be unlikely to fall out but I would be unlikely to have children. At the time I had only started going out with my boyfriend (now my husband) and kids were the last thing on my mind, as I was doing well professionally, so this didn’t seem too bad a deal. I was glad to keep my long hair – it was my pride and joy! It makes me laugh to think of the frivolous things I thought about at the time.
The chemo was tough – no denying that. The injection made me so sick that at one point I ended up in hospital, as the anti-emetics couldn’t relieve it. The pills made me feel even more nauseous, and the steroids had me up during the night doing the ironing! I couldn’t go to work, so took sick leave. Some days I felt fine, then others I usually ended up desperately sick but I was determined to beat it. Each time I ended up becoming intimate with the WC, I thought “at least I’m getting the cancer out of me”. Once again, my family were pillars of strength – they never showed their distress in front of me, it must have been a total nightmare for them. One lovely man, an elder at the church that we were all members of, visited every Friday evening to support my parents through this time which helped them (and me) immensely.
After six months of chemo (which went on a little longer as one of my sessions had to be cancelled due to low blood counts), I went back to work part-time. Follow-up visits became more and more hopeful. I got married 7 months after my treatment finished – during which time I had been told I was going through a chemotherapy-induced premature menopause. This wasn’t a shock – the haematology consultant had warned me that I wouldn’t be able to have children because of the treatment drugs. It was one of the things I would have to sacrifice in order to stay alive. So life started looking up again. I felt better than I had in years, I loved my job, and I was enjoying married life and setting up a new home. This time I knew, I just KNEW, I had seen the last of HL.
My haematology consultant, to whom I owe my life, was delighted when I brought my new baby son to visit him just before he retired. I was blessed to have had such a fantastic medical team looking after me, an amazing family giving me support, and now a child of my own – followed by a second (my daughter) two years later. Talk about little miracles!
These experiences have been a big huge learning curve – but I have been able to use them in my nursing career. When no-one else can comfort a patient about their fears of radiotherapy, I can and have. When no-one else can inform a patient about how it feels and what to expect from chemotherapy, I can and have. When no-one else can help newly diagnosed cancer patients with coping strategies and how to apply them, I can and have.
I was right – doing the Nursing degree was the right move after all, and I would like to think my experiences with the Big C made me better at my job. Fifteen years on from the last diagnosis, I am officially cured.
“The human spirit is stronger than anything that can happen to it” C.C.Scott
“A strong positive mental attitude will create more miracles than any wonder drug” Patricia Neal
“The most important thing in illness is never to lose heart” Lenin
June's Jottings 