Cancer & Me – Thirty Years On (Part 3 – Brachytherapy – the Radium Needle Implant)

My younger son spent as much of his Easter holidays with me as was possible and we travelled far and wide together, spending several days in London with friends who drove us all around the sights and we also saw Les Miserables from the cheapest seats up in the gods, looking down on the heads of the company, but nevertheless enjoying it (if that is the right word for we felt quite exhausted afterwards). We went up to Cumbria, to stay with another friend, visited Kielder Water, the Beamish Museum and attended a fund raising event hosted by Jonjo O’Neill, the jockey and trainer, himself a cancer survivor. The star of the show was Aldaniti the famous racehorse who had won the 1981 Grand National, ridden by Bob Champion, who had recovered from testicular cancer and the horse had even been nursed back from serious injuries. Bob’s story was made into the film Champions, starring John Hurt.

Aldaniti

Aldaniti

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I was admitted to Christie Hospital (and Holt Radium Institute, as it was then) in April 1986. Dorothea came over to my folks to collect me the previous evening and I stayed the night with them. Not long after I got to Christies other ex-Zambian friends came over from Chester to visit.

Connie, Me, Jack and Stephen (Dorothea's eldest)

Connie, Me, Jack and Stephen (Dorothea’s eldest)

I was introduced to the consultant in radiotherapy, Dr James and with him I had an immediate rapport. I was quick to notice a segment of one of his eyes was a different colour and I found it fascinating – even though I had seen this before on a friend at school. By some amazing stroke of luck, he had actually done three years at the University Teaching Hospital, in Zambia’s capital, Lusaka, so we already had a mutual connection. I felt safe with him and the staff.

Dr James examined me and explained I would be undergoing a series of tests, including rectal washes over a few days. I was to be given a radium needle implant, well, caesium to be precise. He showed me examples and I thought the word needle to be rather a misnomer, as the needles resembled terrifyingly large nails! So, I would be moved to a bed in the corner, which had the radiation sign above it, to remind people I was radioactive. Ten needles would be surgically implanted around my anus, stitched into position and to be left in situ for nearly six days, with me remaining immobile for all that time and visitors only allowed for one hour and could come no closer that the foot of the bed. I’m sure the word brachytherapy wasn’t given to me at the time, but it is so hard to take everything in, that it may not have registered.

I would be on a special diet with no roughage and given medication to make me constipated and I would be catheterised. Each morning the nurses would bring me a bowl of water to wash in, bring me food and remove the tray after I had eaten. They would also bring a controlled drug to fight against infection, which needed two of them to sign for and administer. The needles would have silk threads attached to them, which would be the only visible sign after insertion and these would be taped to my legs and counted regularly just to make sure they remained in position. There would be no other contact from the nurses and I was to lie as still as possible.

Later that day I made a point of wandering down to the children’s ward for I knew that would be the leveller and help me get things into perspective. It certainly did that; children of all ages, bald headed, sunken pale faces, huge eyes, hooked up to all kinds of tubes or machinery – and great big smiles. The tears rolled down my face as I made my way back to Ward 1.

The procedure went ahead as planned and the nurses tried to make me as comfortable as possible. Visitors came and went (Dorothea or Pete most days) and a friend brought my parents in to see me, but I just couldn’t bear the pained expressions on their faces and it was really hard to cheer them up, as by this time the pain was becoming intense as I became quite badly burnt and when I moved the needles would criss-cross against each other. I was told I needn’t suffer, as I could ask for something for the pain at any time and not to worry about becoming addicted, as they would wean me off it gradually. I chose not to have any morphine, but one day I asked for some medication for a headache. And what a pleasant surprise to find the patients were offered a tot of brandy or sherry from the trolley, provided by the Friends of Christies. I looked forward to teatime each day!

Brachytherapy 1

Brachytherapy 2

Photos of the procedure are not for the faint-hearted so I tried to find diagrams that would explain better than I can verbally. I found several, but not pertaining to anal cancer, so these are the nearest and they are with regard to prostate cancer, so at least a similar area!

brachytherapy needles SeeDOS Ltd - HDR MRI Template-Reusable

image from SeeDOS Ltd

Image from Wikipedia

Image from Wikipedia

If you really want to see a photo of anal brachytherapy, I managed to find one here: http://www.thejgo.org/article/viewFile/2694/html/17835

By the end of the six days I was quite badly burnt and the sickly sweet smell of burn flesh very noticeable. As the days wore on and the 132½ hours approached I became more and more sore and very scared of having the needles taken out. I have good healing skin and I knew it would be difficult removing them. Because the time had to be accurate they would be removed precisely at 10.30 at night and a sister had to do it, as staff nurses weren’t qualified to perform the procedure.

That night we didn’t have a sister on duty, so one from another ward had to be called, someone I had never met before instead of one of those I knew and trusted implicitly. By the time 10.30pm and the new sister approached I was in a state of panic, but without justification, because she was just as kind as the nurses who had been looking after me. Upon hearing my concerns she called a doctor, who came and administered an intravenous dose of Valium, which quickly sent me off to cloud cuckoo land! The sister was onto the 7th needle before I came back to earth. From then on it was painful, but far from horrendous.

The next hurdle was to get the old bowels open and I couldn’t leave hospital until then. From not being able to eat any roughage, I was suddenly stuffing myself with fruit, vegetables and anything else recommended. Everything failed! Everyone on the ward was most concerned about me. I would go off to the loo and when I emerged they would ask if I had been successful. Negative! Finally, in desperation I was given a castor oil enema. I had to lie in bed with the foot tilted upwards in order to help the caster oil do its work. When finally we had lift off it was excruciating – the back passage being so terribly burnt, but I felt it worthwhile as I had avoided a dreaded colostomy!

There was a well educated elderly lady in the bed next to me and when I told her the enema had worked she clapped her hands and exclaimed in her very refined voice, ‘oh, jolly hockey sticks!’ I thought that expression only existed in girls’ stories from a bygone time!

I’d been in hospital two weeks and back home at my parents I had daily visits from the District Nurse to ensure the burns didn’t become infected, but there wasn’t much she could do, finally deciding on honey dressings. The burns covered approximately a 4” diameter and by now were oozing pus. Going to the toilet remained a problem, but on the 21st April Charles and Diana were coming to open a sports centre in my town and despite the pain and discomfort I went along to see them, Mum and I were taken to the venue by Dorothea, as she wanted to see them too.

Brachytherapy

Mum and me waiting to see Charles and Diana (bit of a pained expression on my face!).

I was on a three-month air ticket and by the end of that time it was obvious that I wouldn’t be able to sit on an aircraft for several hours, so another friend pulled a few strings with the airline company and got my ticket extended by a month at no extra cost.

Being faced with your own mortality really spurs you on and even though I could hardly sit down even with the aid of a rubber ring (provided by Dorothea), I worked like a wild woman on commissions to try and make enough money to repay my airfare (I didn’t have time to die) and also did a painting for Ward 1, as they had very little on the walls. There was snow on the ground when I was admitted to Christies and the first daffodils were bravely pushing their heads through the snow. I saw that as a metaphor and so painted them and took the picture to the hospital when I went for my first check-up. The nurses got the maintenance man to hang it on the wall by my bed. In addition I framed two prints for them.

Looking back it’s hard to remember which paintings I did just after being discharged from hospital, but I think this is one from that period before I returned to Zambia:

Samantha

Samantha

Some of the staff with the pics I took to Christies:

staff at Christies 1

staff at Christies 2

staff at Christies 4

In the pictures above are Sister Kay, Staff Nurse May and Auxiliary Vera, apologies for not remembering the names of the other two sisters. I couldn’t have wished for better treatment from any of them. Next time it was to be on a surgical ward…

Cancer & Me – Thirty Years On (Part 2 – Best Friends Forever)

Visiting a doctor at any time can be embarrassing, but when it involves anal examinations and biopsies – and two of the doctors concerned are people you meet socially, well, it doesn’t get much worse! That said, there is no doubt in my mind that my friends Indira and George were instrumental in saving my life and I can never thank them enough. Without them and the doctors I would meet along the way, I would never have seen my boys graduate, get married and have children – and neither would I have met the love of my life.

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Having just been given the bad news, we left the hospital and drove around to my friend’s house to tell her in person. As I didn’t want any blubbering I thought the best thing would be to make light of it and spit it out as quickly as possible. ‘Hi Joan, just seen George, put the kettle on, get the brandy out, I’ve got cancer and need a drink!’ Without having time to think about it Joan went over to automatic pilot!

As mentioned in Part One, I didn’t even have enough money for a flight home from Zambia, but I had nowhere to stay down in South Africa, so somehow or other I would have to raise the money to head back to my parents in England. By coincidence my ex was getting a lift to Harare to fly from there to the UK as the flights from Zimbabwe were much cheaper. We were still friends at that time so I thought I might be able to get a lift with him and his driver and also take advantage of the cheaper flight. I rang his home and spoke to his wife and passed my idea by her. Astonishingly (I thought we were friends too) she refused to give me the contact details of where he was staying in Lusaka, saying I couldn’t possibly make the journey with him! I’d just told her about my cancer, so words failed me, but I did phone her back later and ask if she would at least tell him I was ill and on the assumption he would be in the UK before me, ask if he would kindly tell his sister (a good friend of mine), prepare my folks and tell our sons.

Joan had phoned around with the news and my husband had gone out to see what he could organise in the way of getting together enough money for my fare. During the course of the day I had a steady stream of visitors and phone calls, but the only one I really remember was a call from my friend Jill and her daughter, Julie. Not a lot was said – they just howled!

Within hours another friend had lent me the fare, the ticket was bought and two days later I was off on my own from Ndola airport. The same friend had arranged for her sister to collect me from Lusaka airport and take me back to her place for lunch, as there was a long wait before the flight to Frankfurt where I would make my connection to the UK. Whilst I was there she received a call from her sister, saying the Zambian Freemasons had taken an interest in my situation and if I was unable to obtain speedy treatment at a hospital local to my parents, I was to contact a certain person and he would arrange for me to be treated at the Royal Masonic Hospital in London.

I knew very little about the Freemasons and had previously enjoyed a laugh at their purported funny handshakes and secret society in general. I had helped the wives when they had to do catering for their men at various events and once even made a celebration cake for a friend’s husband who was to be inaugurated as Worshipful Master (or whatever). What I hadn’t realised was the amount of good works they did secretly – and it seemed I was classed as a ‘worthy cause’! As it turned out I had no need to take up their kind offer, but I was very grateful to them and it made me very much more aware of their good deeds.

On the flight to Frankfurt I recalled the previous evening when I had arranged to meet all my friends at the Pony Club. For all I knew it might be the last time I would see them, so I had to make the effort, though really I should have been preparing for my trip.

A piano had appeared from nowhere and to this day I have no idea if it was there due to some function the previous weekend or if my friend/s had arranged for it to be there just for me, as it was well known that in the true Irish fashion of my paternal ancestors, I love a good sing-song. It was a bit of a joke, as I have a terrible voice, but under the influence of a couple of drinks that does not deter me, in fact I would often be instrumental in initiating a musical evening – or perhaps not so musical evening!

The evening dragged on with my friend Mike at the piano, playing all my favourite tunes. Many of my friends were in tears, but I was bearing up quite well until Mike played ‘You Are My Sunshine’. When he got to the ‘please don’t take my sunshine away’ I became somewhat emotional, but did my best to fight back the tears. Looking around at all my friends I felt blessed, but wondered when they would be going home as I was leaving early next morning and had lots of stuff to be doing! Obviously I didn’t want to leave before them, as they had made so much effort and I was hanging on to every precious moment. It took me some while to realise they were staying with me as long as I remained there. Eventually the penny dropped and we all left together!

Several of them had given me cards to open on the aircraft and firm instructions not to open them beforehand. When I did so on the flight I found them to be stuffed with cheques with a value of over £650! Good friends indeed!

It was early February – still hot when I flew from Lusaka to winter in Germany, where I had to catch a connecting flight. When we reached Frankfurt the pilot announced it was minus nine degrees, but with the wind-chill factor it was -16˚. The passengers gasped when the doors opened and the cold air rushed in – and walking out of the aircraft onto the top of the steps we could hardly breath so made our way with great haste to the buses that would transport us to the terminal building. As I had a couple of hours to wait for my connecting flight I decided to phone friends living in Frankfurt, thinking it could possibly be for the last time. I recognised Horst’s voice and said in my best German, ‘Guten morgen! He replied, ‘Good morning, may I help you?’ So much for my attempt at speaking his language!

When we left Frankfurt the weather outside was bright and crystal clear, the white tipped mountains swathed in soft cotton-wool clouds. Earlier, when we had flown over the Alps on our way to Germany it was still dark, so I missed the view then. As the cloud cleared and the mountains gave way to the lowlands the ground remained white, just divided into irregular sections by hedges, trees and roads. We flew over Ostend and across the Channel and it was dazzling in the sunlight. Even above Folkestone and Dover we could see the snow extending from the sea and covering the whole of southern England. Above Nottingham I thought of my elder son down below, probably still tucked up in his bed at his student accommodation, blissfully unaware of what was happening to me.

Manchester was relatively green and quite mild at 1°C, but this time the giant vacuum hose was waiting to suck us from the aircraft and save us from the elements. I made my way with the few passengers (mainly businessmen carrying only brief cases or hand luggage) to the arrivals hall and loitered awhile, looking at the horrendous photos and literature about rabies – not pretty!

I trotted down the stairs to await my luggage and there were five suitcases already waiting on the conveyor. Before I had time to think about how long I might have to wait for mine, a porter called over to me, “Is yours not there, love?” “No!” not thinking there was any undue delay. “Did you start your journey in Frankfurt?” “No, Zambia.” “Gawd!” came the reply and like a man who knows the ropes he went to the nearest phone, spoke to someone for a few minutes and then returned to tell me he’d had the aircraft checked and my luggage wasn’t there and there was a man on his way down to see me. Moments later we saw a uniformed guy hurrying towards us.

“Come with me, give me your details, is your address on the case, what sort of case is it?” (showing me a giant chart with every conceivable suitcase type on it). He took my ticket and fed all the information into the computer. I filled out the customs declaration and he said my case would automatically be opened when it did arrive. I said I hoped my banana bark picture didn’t fall into the prohibited plants category. He replied he didn’t think that was a problem, they would mainly be looking for living plants, arms, meat, heroin, marijuana ivory and rhino horn. I scoffed and said, “hardly!’ as I exposed my tee-shirt to him, with the Save The Rhino logo emblazoned across my bosom. He wasn’t impressed with tee-shirt – or bosom!

The little man seemed confident that my case would arrive on the evening flight from Frankfurt and would be dispatched by carrier to my address the following day. I’d always advocated carrying a change of clothing in one’s hand baggage, but of course on this occasion I had forgotten!

I was met by my very good (ex-Zambian) friend, Dorothea (a nurse) and her youngest son who were looking everywhere for me, as all the other passengers from Frankfurt had left long before I appeared. We drove to their house in Manchester for a cuppa and then to my home town to meet my ex-sister-in-law who worked in admin at our local hospital. Apparently my ex had already been in touch with her and she had contacted my GP, so already the wheels were in motion – and she had made an appointment for me to see him later that day. Dorothea left us then and returned to Manchester as I went off to see the GP. I gave him the letter George had written for him and without examining me he said he would refer me to a consultant .

By the time I got back from the health centre my ex had arrived at his sister’s and he came with me to break the news to my folks. He also agreed to contact our son at university and bring home our other son from school on the Friday, as he only boarded four nights a week. The journey home would also give them time to discuss my situation, so that I wouldn’t have that difficult task, though needless to say, our meeting was still very emotional.

Eventually I received the appointment with the consultant, who in turn organised another biopsy – and barium enema x-Ray, the very name filling me full of dread, but nothing had prepared me for what preceded it. I was given two sachets of the laxative Picolax to take, one sachet 24 hours before the x-ray and then another 12 hours before and also a diet sheet for that period. The idea being to flush out the entire system and as soon as the first sachet started to work I was frightened to leave the toilet. Not only that, I was vomiting to an extent were I though my whole stomach was coming up into my throat. I couldn’t even keep water down, so became terribly dehydrated which caused a screaming headache. Then came the second sachet, which I took as per instructions. Big mistake, as by that time I had no strength left and was either sitting on the loo or retching uncontrollably – or both. I could barely stand and had no idea how I was going to get to the hospital. I wouldn’t even have made it to the bus stop and no way a taxi driver would have taken me with a bowl sitting on my lap! My mother hatched a plan and went and asked her neighbour, even older than she and in his late 70s, if he would take me. Together they practically carried me to his car and bundled me inside.

I didn’t want Mum to come, so off I went with Mr Peet. When we reached the hospital I said he had no need to wait as I had no idea how long I would be, but promised to call him if I needed him when it was all over and done with.

Only those who have had a barium enema x-ray can fully understand the discomfort and indignity, so combine that with already feeling like death and you might visualise the scenario. The literature I read beforehand hardly described my personal experience, but I do concede it might have been because I was so unwell due to the effects of the Picolax. You can read more how it is meant to be by clicking here. Good old Mr Peet was still waiting for me when I came out and he took me safely home!

I celebrated my 41st birthday and was smothered in flowers from my friends and some of those in Zambia had clubbed together to buy me a fabulous short-wave radio, which was to keep me in touch with the outside world when I returned to Zambia and it was also responsible for me becoming a big fan of Outlook, The Archers and BBC World Service in general!

My 41st birthday with cake, flowers and short-wave radio.

My 41st birthday with cake, flowers and short-wave radio.

With Mum and Dad on my birthday

With Mum and Dad on my birthday

Back at the local hospital a couple of weeks later, the results of the biopsy and x-ray were given to me by a visiting consultant from Christie Hospital in Manchester, the nearest hospital specialising in cancer at that time. His news seemed more optimistic than the results I initially had in Zambia. He said it was a squamous cell carcinoma, which was a type of skin cancer and he felt it could be treated with radiation. When my son came home from school that Friday, I was able to give him the good news. Associating skin cancer with the sun, he immediately quipped, “well you know Mum, I always thought the sun shone out of your arse!”

Cancer & Me – Thirty Years On (Part One – to Begin at the Beginning)

The realisation that it is 30 years since my cancer first manifested itself has prompted me to turn this into a cancer blog, rather than the general blog it used to be. I shall continue with my occasional ramblings (and sometimes rant) at willosworld

As I am part of that small percentage that has survived (thus far) recurring and metastatic cancer, I feel it might offer some support and encouragement to those currently in a similar daunting situation.

Reviving a malachite kingfisher that had crashed into a window

Reviving a malachite kingfisher that had crashed into a window

My cancer story is long and convoluted, so I shall write it in episodes, as it will be easier for the reader to digest (and for me to write), but a word of warning, it may become, by the nature of my cancers, more than a little graphic and as I am sure you will appreciate, not the easiest of cancers to talk about…

Rambo - a 40th birthday present from friends who thought I needed a guard dog!

Rambo – a 40th birthday present from friends who thought I needed a guard dog!

card 2

I was living in Zambia, with my teenage children away in the UK, my elder son at university and the younger one doing his A Levels at boarding school. It was 1985 and had been quite a year; we had experienced a few burglaries at home, a very dear friend and his companion had been killed in a road accident just outside the town and another dear friend in the UK had died quite suddenly during surgery for cancer of the spine.

My watercolour of Hubert, who died in a car crash in 1985

My watercolour of Hubert, who died in a car crash in 1985

With Hubert's dogs in the aftermath of his death

With Hubert’s dogs in the aftermath of his death

With all the stresses I had undergone that year and with my eldest no longer eligible for free flights from the company his father worked for, it is no wonder I was at a low point in my life. I was divorced from my first husband and my second husband and I were struggling financially. We lived a fairly hand-to-mouth existence with me padding out his income by selling my artwork. Regular airfares were completely out of the question for us – and the boys’ father was more interested in flying out his stepdaughter three times a year, his brother-in-law and mother-in-law regularly, rather than his own son (mutter, mutter, discontent!). I was working furiously and saving towards an airfare in 1987, in order to go to the UK for my elder son’s 21st birthday, his graduation and Christmas.

Over the years I has suffered regular bouts of IBS at varying degrees, so when it increased that year I just put it down to the additional stress. I had been in a great deal of pain and discomfort before my younger son’s Christmas visit and when I developed other symptoms I thought it was time to see my doctor, who referred me to a surgeon. Unfortunately he wasn’t the slightest bit concerned with my symptoms and fears and I was more than a little alarmed when he didn’t even examine me! He declared it was haemorrhoids and didn’t recommend surgery, as, according to him it only had a 50% success rate, so he just sent me away with a prescription for some cream to apply to the affected area.

Going to the toilet had become increasingly painful, to a point where I would have my left arm resting on the washbasin and the right hand would be clawing the wall with my fingernails, sweat and tears rolling down my face and I seemed to be swinging between constipation and diarrhoea. At the time I had a studio in a friend’s garage and one day the urge was so great that I just had to dash to the loo ASAP. I started work at 7.30am and my friend wasn’t yet up and the house door still locked. Unfortunately the urge was so great and the pain so excruciating that I just had to go in her garden – and hoped the gardener wouldn’t see me!

A lesion had developed just at the edge of my anus (visible with the aid of a mirror) and I suspected the worst, but was determined not to let my son know, so that he could enjoy his holiday as usual. I would get back to the hospital just as soon as he left for the UK. In spite of the pain I tried not to show it during the following month, but was probably more demonstrative than usual in showing my love for him and telling him just how proud I was of him and his brother (who was spending Christmas with my parents) and just how much I cared for them.

Me at Christmas 1985

Me at Christmas 1985

Judging by my hand gripping the seat, I'm guessing I'm in pain!

With one of my four rescue cats and judging by my hand gripping the seat, I’m guessing I’m in pain and nothing to do with Torty sticking her claws in!

The school holidays holidays over, I returned to the hospital in January to see my doctor, Indira. By this time I could hardly sit on my seat in the hospital waiting room. Indira eventually called me into her consulting room where she examined me again. She shared my concern – and said I must go back to see the surgeon, but seeing my face she asked if I didn’t want to do this. I asked what would be the point when he was convinced I was only suffering from some minor ailment that could be cured with creams. ‘OK’, she said, shall I ask George if he’ll see you?’ George was a friend – and orthopaedic surgeon, so it seemed highly unlikely that he would deal with colorectal matters. Anyway, she asked me to return to the waiting room and she would call George and see what he said.

A few minutes later I was called back, with the news that George would see me at his clinic on Thursday. He was more than a little disturbed at what he found and told me to be on the ward at 7.30am the next day where he performed a biopsy. I was in such pain when I came around from the anaesthetic as I had been packed like a stuffed turkey. A nurse put me into a warm bath to soften the dressing, but hardly gave it time to do so when she rather brutally dragged it out. I cringe at the recollection, but that was only the harbinger of worse to follow.

George told me to wait two weeks for the results, but 10 days later I received a call from him just after 5pm, though he wouldn’t discuss the histology report on the phone. I knew at once it was bad news and I was to see him the following morning and bring my husband with me! Yes, it was cancer and with no treatment available in Zambia, he instructed me to get to South Africa or the UK without delay; time was of the essence.