Where's Jacko?

After almost three months of my life being consumed by cancer and all its ramifications, I can no longer remember what it was like to be me pre-illness. I just can't see that happy, positive, funny, fearless, enthusiastic person I used to be. And I can't imagine her coming back any time soon.

There are glimpses from time to time, of course, on the days when I'm feeling "well" (comparatively speaking). Sometimes, I'm filled with my old familiar sense of well-being, where I can look optimistically at the future, take pleasure in my surroundings and laugh when Evan is entertaining me with one of his many impersonations.

But days like the one I'm having today seem to be happening more frequently as this journey continues. I'm on the third day of my second chemotherapy treatment and feeling like shit, both physically and emotionally. The constant nausea and tiredness is beginning to get to me, and everything - even having a shower - is an effort. I'm beginning to sleep a lot (thanks to low blood counts) and feel lethargic and lazy much of the time. For some reason, the pain caused by the internal healing of my incision is worse than it was a few weeks ago. I'm often on the verge of tears and lack the enthusiasm needed to alleviate the boredom beginning to dominate my days. I want to be surrounded by friends and family.

Today, I made myself walk the mile to Tesco, along my favourite Water of Leith walkway. We had sunshine today for the first time in a long time, accompanied by brisk cool winds, but pleasant all the same. I treated myself to lunch (which I couldn't finish) and picked up the Saturday papers. By the time I was waiting for the bus home, I was exhausted and in pain from my incision. I rang the bell for my stop in plenty of time but couldn't get out of my seat fast enough to make it to the door before it closed so had to walk farther because of missing my stop. Normally, this sort of thing would just make me feel a bit irritated. Today, it made me cry. And the crying stung my eyes because of one of the chemo's many weird side effects.

Before my chemo was started on Thursday, the duty oncologist had to see me to make sure I was well enough this time (it had to be postponed last time because the first session made me so ill). While he was quickly reading my medical history, I was also reading it upside down. The first paragraph started, "52-year-old woman, extremely fit, healthy and active, presenting with colorectal cancer...".

Where is she? That fit, healthy, active woman. Is she coming back?

Hospitals

Now that my life seems to revolve around hospitals these days, I'm reminded of my very first experience as a hospital patient in Edinburgh.

It was 1971 and I was 17 years old. I had some sort of gynaecological trouble and duly took myself to see a doctor, who had long ago lost interest in delivering patient care, quality or otherwise. Without physically examining me or asking too many probing questions, he decided I had a yeast infection and sent me off with a prescription for ointment. A few days later, I was in such severe pain that I could hardly walk and went back to insist that he take a look. He had the grace to blanch when he saw what was under my skirt and told me to get to emergency immediately.

So there I am, a few hours later, lying on a trolley in an overcrowded emergency ward at Edinburgh's Royal Infirmary, a vast Victorian edifice blighted with numerous concrete additions randomly added throughout the mid-20th century to accommodate its ever-increasing needs. 12-year old boy doctor comes to my cubicle, pulls the screen around it, lifts up the blanket and gasps. Then, to the undoubted amusement of the other patients, male and female, shouts in a broad Scottish accent, "Nurrrse - come and look at the size o' this girl's vulva!"

Nowadays, of course, I wouldn't end up in hospital for what had started as something quite routine and easily treatable if my GP had bothered to take a look in the first place. But 36 years ago, whatever it was (and I never found out - they didn't tell you anything in those days) justified a one-week hospital stay.

So - into the gynae ward, along with 20 other women of various ages and with various complaints. Because I was in this ward, I was automatically upgraded to Missus Nellis, the assumption being, I suppose, that you must have a husband in order to have gynae problems. My treatment was straightforward, a combination of old folk medicine involving being painted internally with gentian violet (which left me with bright purple nether regions) and more sophisticated 20th century drugs. It was unpleasant but not debilitating; however, the rule at that time seemed to be that if you were in hospital, that meant you had to be in bed except for when your bed was being made, when you were allowed to sit in the "day room" and look outside to the Meadows, a big beautiful park surrounding the hospital.

The whole thing was very Victorian. The nurses wore long blue dresses reaching their calves, a starched white collar to choke them, and an ocean of white bibbed apron covering the skirt, a black belt, thick black stockings and shoes, and a starched white cap. They weren't allowed to wear make-up, hair had to be well above the collar and the only jewellery allowed was the watch pinned to the apron bib. They were so heavily starched, they rustled when they walked. I had to wear a heavily starched nightgown, which covered me from neck to toes. The combination of the starched gown along with even stiffer sheets left me with skin rubbed raw.

Patients were startled awake at 5:00 am by the crash of breakfast trays being slammed onto each bedside table. Porridge, made the traditional way by cooking overnight on low heat, with the result that you could dance on it. And, being traditional Scots porridge, it was heavily salted and any request for the addition of sugar and milk would have earned you a brisk thrashing. The oatmeal dancefloor was accompanied by slices of toast burned within an inch of their lives, allowed to grow stone-cold and then thickly spread with lard dyed yellow and masquerading as margarine. All washed down with stewed, bitter tea with sugar and milk in such generous quantities that it was no wonder there was none left to make the porridge palatable. Lunch and dinner foods were no better and usually worse, mostly consisting of lumpy, tasteless mashed potatoes, soggy tinned vegetables and unidentifiable grey meat congealed in erzatz gravy.

Not only were patients forced to get the porridge past their gullets in the middle of the night, they had to dispose of it - all of it - as quickly as possible so that everything could be cleared away and the night nurses could finish off their duties before the day nurses came on. After rounds, there was a flurry of activity while medication and treatments were administered, beds were changed, patients inserted into clean stiff nightgowns and tucked into bed with such vigourous efficiency that it was impossible to move. Patient clutter removed from tables and, no doubt, bed wheels aligned so that the ward was a picture of efficiency for the all-important doctors' rounds. Now, Missus Nellis, we wouldn't want Doctor seeing all your untidy magazines and sweets, would we?

The ward Sister (known as a charge nurse nowadays) had the honour of accompanying the gods to each bedside, a junior nurse hauling a portable screen behind them. The screen would be opened to conceal each bed while the gods murmured and made notes and Sister spoke in a suitable muted voice, with the patient struggling to hear what they were saying so she could find out how soon she was expected to die. A bit of poking and prodding, a couple of questions, and they'd move on to the next bed. After they left, you were allowed to mess up your bed with as many magazines and sweets as you liked and the tea ladies were liberated from the ward kitchen to deliver mid-morning hot drinks and biscuits.

When my sisters and I visited my dying mother in 1976 in the same hospital, nothing much had changed. The beds were still all lined up neatly for visiting hours and one poor old lady pushed herself around aimlessly in a wheelchair. She looked about 90 and was clearly only in a medical ward because there was nowhere else to put her. She was tied into the chair with an assortment of belts and straps and wore a hand-lettered cardboard sign around her neck, attached to her with string, which read, "Please return to Ward 34". She apparently made frequent attempts to escape the rigours of Ward 34 and ended up all over the hospital often enough to necessitate some ID.

My hospital experience in 2007 was vastly different, as one would hope. There were only six patients in my ward and breakfast was served at the more civilized hour of 8:00 am, in accordance with items chosen from a menu by the patient. No more starched Victorian nightgowns because they'd rather you wore your own clothes to save on laundry. Doctors' rounds are casual, unscreened unless there's a physical exam needed, and no nurse escort. No demi-godlike behaviour either. Not from my surgical team anyway. I also had daily visits from my own colorectal nurse and a member of the pain control team. You can make as much mess with newspapers and books as you like around your bed and nobody cares. The nurses' uniforms are much more sensible and less fussy - navy trousers, their own choice of sensible shoes, white jackets with contrasting binding and epaulets denoting their status (staff nurse, student nurse, etc.). The tea lady is around with her trolley at regular intervals and calls everybody darlin'. Are ye wantin' a cup o' tea and a biscuit darlin'? And the food is much better.

The Edinburgh Royal Infirmary has now been rebuilt in a new location in Edinburgh and the original building sitting in the Meadows is in the process of being converted into luxury flats using the original Victorian building. Very upscale.