June L

It’s been a while since I updated my blog, purely because I have been busy fighting the dastardly villain known as Big C – and so far, I believe, I have the upper hand.

Many of you will know, or have read on my blog, that I have had Hodgkins Lymphoma twice – several years ago, and that I am cured from that disease. However, not content to be vanquished by attacking my lymphatic system, Big C has come back – this time in my left breast.

Because I had very very high dose mantle radiotherapy for my first bout of Hodgkins, in 1992, (which was situated in my mediastinum – so my upper chest area received the full whack of radiation), I have been going for annual mammograms. My haematologist had warned me that I was at very high risk of contracting breast cancer in the future, way back when my treatment was due to start, but me – being faced with cancer at the age of 21 – just wanted it gone, thinking I would deal with the complications later on. Well, the last 18 years of mammograms came and went, and save one visit that required a repeat xray done, all were normal. I have to admit as to getting a bit lax about these appointments when year after year the same letter came back saying there were no abnormalities and that they would call me back a year later for my next one. I even got to questioning as to whether or not these visits should be continued. After all – that’s 18 years ago, I thought. If I was going to have contracted breast cancer, then it would have appeared by now…….

Then came last November. Oh joy, I thought, another mammogram appointment. Well, I know what the outcome is going to be. I have no lumps or bumps anywhere, no swollen lymph glands under my arm and I’ve been in good health – ach, it’s a waste of an afternoon, but I’ll go anyway. I went, got all the xrays done, thought no more of it. Until the following week. When a letter arrived on the front door mat. I could see from the franking on the envelope that it was from the clinic, and I was surprised they had got back to me so quickly considering everything was ok, but all became apparent that things were not quite as normal as they should be. I had to go back for a mammogram, an ultrasound and possibly a biopsy the following Friday. That was all the letter said. They would tell me why I had been recalled at that visit. Well, I got a little stressed about this for a few minutes – but then remembered I had had a recall several years earlier and everything was ok, and despite them mentioning the other tests, I probably wouldn’t need them – it would be a standard letter. I was also informed to leave most of the day free for this appointment.

Roll on a week and I’m back at the clinic. Mammogram duly repeated, and an ultrasound done, I got called into a doctor’s consulting room and was shown my films. Both xray and ultrasound had confirmed that there was a tumour in the left breast, but until they did biopsies, they couldn’t tell if it was malignant or not. Would I please take a seat in the waiting room whilst the doctor finished her clinic and then they would do the biopsy afterwards?

An hour went by. People came and went. I won’t forget that waiting room. It was small, chairs all round the wall, tea and coffee-making facilities and a radio tuned to the local station emitting some well needed silence breaking tunes. And an overpowering sense of fear. Lots and lots of very very scared women, I have to say, me included. “Ach”, I thought. “You know what? If it is malignant, well then I’ll just do what I did with my Hodgkins and beat it to a pulp. Cancer is not a death sentence”. But I was still scared. Even though I had no symptoms whatsoever.

Eventually I was the only one left in the waiting room. Silence, apart from the radio which was playing this song (below). Freakily, it has stuck in my head since and is my mantra when I find things get a bit too much… In fact it is my cancer theme song.

http://www.youtube.com/watch?v=pO40TcKa_5U&ob=av2n

After a wait of about an hour, I got my biopsies done (eight samples were taken under local anaesthetic), and a further wait of four days ensued. Went back to the clinic on the fourth day and was told that indeed, the tumour was malignant. The world didn’t come crashing down round my ears – I just put on the armour I remember putting on when battling my Hodgkins and knew that I would be the victor in this battle against Big C. Round Three. Ding ding.

An MRI was done, which indicated that it was a small tumour – about 11mm in size, and that it had not spread to my lymph nodes. Further tests showed that it was also non-aggressive and slow growing, so if there was any good news from this whole thing – that was it. Dates for surgery to remove the tumour were made, and treatment was discussed. Because I have had radiotherapy to that area in the past, standard modes of preventative therapy are not open to me, but I agreed with the surgeon that tumour removal and a course of tamoxifen for five years would suit me fine at this stage. He warned me that I am more likely to have a recurrence – but I said, if that happened, I would deal with it at the time.

I had surgery as a day case on 28th December 2011, which kind of spoiled my Christmas but at least I would be starting New Year cancer free. Before I went to theatre I had to get a wire inserted into my left breast so that the surgeon could locate the tumour. That was a relatively painless procedure – a bit stingy but that’s all. Surgery was performed, and four hours and several hundred cups of tea later, I was home.

I went to my follow-up visit at the clinic yesterday afternoon where I was told the results of the surgery. I had gone to the clinic expecting to start tamoxifen treatment, but as they say…”the best laid plans of mice and men”. The surgeon told me that the tumour itself had been removed, but pathology shows that there are still some DCIS (ductal carcinoma in situ) cells left in me, that need removed before they develop into another tumour – so a further operation, smaller this time, would be required so that they could remove the affected tissue. That was a bit of a bummer (pardon my French). So the date for that is 1st February. Then, armed with research and statistics, the surgeon then explained that I am at extremely high risk of cancer recurring within the next few months. I won’t bore you with all the numbers, but put it this way, the choices I have are to keep my boobs and have a much shorter lifespan, or to have a bilateral mastectomy and live into old age. That hit like a brick! To be honest, I guessed that a mastectomy would be in the offing, so I was prepared for it, but not quite so soon as what the surgeon was proposing. However, with two children, I just know which decision I am going to choose. I want to see them grow up, get married, have children. I want to live into old age being a crazy Granny. So the bilateral mastectomy and reconstructive surgery it will be – probably mid-June time. It’s going to be emotional, but conquering Big C isn’t easy. He doesn’t go away without a fight. But I know in doing this, I am going to win.

“You gotta be bad, you gotta be bold, you gotta be wiser. You gotta be hard, you gotta be tough, you gotta be stronger. You gotta be cool, you gotta be calm, you gotta stay together. All I know, all I know, love will save the day” (Des’Ree “You Gotta Be”)

Stay tuned.

Poems

Look At Us Now

July 31, 2012January 11, 2018 June L

As I compile my family tree,

Tapping away on my laptop PC,

I wonder what those, whose names I type,

Would think of life now, and all its hype.

In days of yore the man was provider,

And the Web they knew was spun by a spider.

Morals have changed as well, it is true,

They’d wonder what the world has come to!

These days of glamour and fast cars,

Celebrity, millionaires and scruffy pop-stars.

Televisions with super-size screens,

And almost all thinking being done by machines.

Eighty years ago, who could have known

There would be such a thing as a mobile phone?

And if you’d thought that computers were bad,

There would suddenly emerge the Apple iPad.

And you may as well forget about writing a letter,

As these days emailing is found to be better.

One goes into bookshops, to buy or just look

For a novel to download to one’s brand new e-book.

The news reports crime due to family dysfunctions,

Or celebrities taking out super-injunctions.

While we all live with the greenhouse effect,

And the sad loss of manners and general respect.

Technology moves fast and sweeps us along,

But are all of these changes necessarily wrong?

Cures for diseases and a widening of knowledge,

And huge numbers of students at Uni and college.

Answers to questions, which couldn’t be solved

Are nowadays nearer to being resolved.

The age of the earth, the planets in space

And the manifest wonders of the human race.

As I compile my family tree,

Tapping away on my laptop PC,

I wonder what those, whose names I type,

Would think of life now, and all its hype.

General

Ward whoppers

July 31, 2012August 18, 2023 June L

I have recently decided to take a career break from the profession I worked hard at for 16 years. After working in areas as diverse as psychogeriatrics to Pharmacological research, earlier this year I decided to hang up my virtual “nurse’s cap” (they did away with these items of uniform along with the shocking electric blue dresses when I finished my training) and graze on pastures new. I’m not yet sure what these pastures will be, but I know they will be something completely different from what I have done.

Looking back over the years, there have been – as with any job – good days and horrendous days. Days when patients who were at death’s door improve so much that they are able to go home to continue their rehabilitation; and days when patients unexpectedly and suddenly pass away leaving devastation among both staff and families. As I have been reflecting over the years I have worked in the nursing profession, some of the funnier stories have come to mind – and I thought I would share them with you.

When I left school I took a Gap Year before Uni, as I had changed my mind from studying English to applying for a place on a Nursing Degree, and I wanted to make sure I was doing the right thing before I started on the course. For this year, I worked in a psychogeriatric ward, where all the patients either had Alzheimers or Dementia. My job was that of a nursing assistant – and coming straight from a very strictly disciplined and elitist girls’ school, it was a real eye opener. It was during this year that I saw my first naked person, and I was embarrassed in bathing people and helping them to the toilet.

Mr and Mrs

One of the patients had been a hospital matron in her day – and she liked to help the nursing staff out with little jobs. Except that this lady was suffering from dementia, and really thought she was still back in her hospital ward ordering people about. One morning I went into one of the bedrooms to open the curtains, and I was met with a lot of even more confused women (they were confused enough to start with) trying to beat some of the very confused male patients out of their beds. Apparently our matron patient had believed they were married couples and had insisted that they shared beds.

Dent-Your Pride

Our matron patient also liked to clear all the dentures off the lockers by the beds, tip them into a communal bowl, wash them and return them back to the dishes on the lockers. The problem was, she was so confused that she didn’t match names to teeth, nor sets of dentures. So one morning, when I did my usual walking into the room and asking how patients were, I had a bit of a surprise when one old lady opened her mouth to answer. I thought I was talking to Mr Ed in a nightdress. The poor soul had been given two top sets of dentures from our matron patient and had been “ordered” by her to put them in, the result being that all one could see was teeth. Her neighbour in the next bed was having major difficulty talking without one set of teeth falling down, until I realised she had two bottom sets! It took a long time for a colleague and I to fetch back all the teeth, wash them thoroughly again and return them to their rightful owners.

Amateur Dram-atics

The next story was a goof up by me. By this time I was a student nurse and I was in one of my first ward placements. I think I was about 19 years old. I was working a late shift and we were trying to get the surgical patients comfortable for bed, as it was coming up to 9.30pm, and the night staff were due on. One of the staff nurses had done the drug round and got called away to give report. She turned to me as she headed to the office and said, “oh Mr So-and-so needs his nightly dram. It helps him sleep. Could you sort that for him please?” and disappeared. She had told me where the whisky was kept, so I got the bottle and then…….wait a minute…..how much IS a dram? I should make it known that I have never been a pub/club fan, and my parents never drank whisky. I knew there was such a thing as a dram, but not how much it was in volume. I walked down the ward to see if anyone else was about I could ask, but the others were either handing over to the night staff, or were busy with patients. So, I was going to have to guess. Now, at this point I should say that now I believe a dram is about 30mls. Student nurse me decided to fill a glass ¾ full of whisky….surely that is a dram? Not too much, but yet not too little. Yeah….I’m sure that’s about right…..and I took this liquid nectar to its expectant recipient – an elderly man with Friar Tuck hair, and no legs. Well, the patient took the glass, seemed VERY happy with his portion, thanked me and I went out of the bedroom.

A few minutes later a call-bell from this six-bedded room was sounded and I went to answer it. On entering the room, I was met with loud raucous singing and laughing; as well as five other baffled male patients. My invalid patient had got so merry on the “dram” I had given him, he had rolled off the bed, and was rolling about the floor like a Weeble toy, singing his heart out. We had to put him in the ward sitting room, with glassfuls of water, until he sobered up. After that, he asked for me to give him his nightly “dram”, but I avoided it like the plague! The other members of staff found it highly amusing.

Verbal Diahorrea

Three years later, I am about to finish my nursing degree and I am doing my management/senior student placement in a gynaecology ward. Students in these environments are nearly always given the enemas to do, and I was always glad when more junior students to me were working my shifts.

On the occasion in question, I was working with a second year student. I had worked with her a lot, and taught her a few things – including how to give enemas and suppositories. On this shift, I was exceptionally busy; I had dressings upon dressings to do and I was also conscious that one of the women needed a pre-op suppository given to her. The student was at a loose end, so I asked her if she would be happy to do the “pre-op supp” for me – she had watched me doing it enough times after all. Or I thought she had. Yes, she said she was fine to do it, and scurried off to get the necessary item.

About ten minutes later, I was doing an amputation stump dressing, when a face peeked around the curtain. “June”, said the student. “Mrs So-and-so is refusing her pre-op medication. Could you maybe try?” I waited until the dressing I was helping with was done, and then I went to attend to Mrs So-and-so, expecting her to be a bit “Bolshy”. Quite the opposite, I had a chat with her, gave her the pre-op supp, left her to it, washed my hands and got on with my duties. A short time afterwards the student cautiously approached me. “Did you manage to get Mrs So-and-so to have her medication?” she asked. I replied, “Yes I did; and for future reference – patients don’t normally agree to swallow suppositories!”

A day in the Theatre

Another tale from my student days – this time in my Operating Theatre placement. It was my second day, the awe of the hallowed static-free room where you see bits of people you don’t normally see, was still pretty potent. The surgeons were some sort of gods who could perform miraculous healing surgery, and it involved a lot of standing. We had been warned at Uni that Theatre placements are notorious for staff winding up students, and had been told about the “Long Stand” trick, so we thought we were prepared for everything. On this day, I was just an observer. After the two surgeons had argued about which music should accompany the operation, the hacking began. I had been told that I was in to watch a varicose vein operation, it was apparently one of the bloodiest, and you had to be careful to dodge the blood when the vein was removed. At least, that was what I was told. So I was concentrating on waiting for the blood gush and trying not to feel faint, when the main surgeon turned to me and said, “You. Stripper!”. I looked round, not sure if he was talking to me. On blankly looking back at him he repeated, “you. Stripper”. I shyly replied that no I wasn’t that cheap kind of girl. “I need a stripper NOW! Go and get me a stripper!” he bellowed, and out that operating room I ran, trying to work out WHY a surgeon would want some floozy stripping in the theatre when he was meant to be doing an operation. The operating suite was busy that day, so I made a bee-line for the Recovery room and told the staff there what the surgeon had asked for. “Oh, he is wanting a new vein stripper, my dear”, said one of the nurses, who then showed me exactly where to find them. It was a very sheepish me who crept back into the Operating Room with the words, “the stripper is now ready for you”. A lot of hilarity ensued.

A cutting question

A year or two later, I was working in a large General Hospital as a Staff Nurse. One day, during my lunch break I went down to the WRVS to buy a newspaper for one of the patients who had missed the paper trolley on its visit to the ward. On my way back to the ward, along the main corridor, I was stopped by an elderly man who seemed a bit perplexed. “Excuse me nurse”, he said. “I wonder if you could point me in the direction of the Lawnmower ward? “ (He actually was meaning the Longmore Ward – the name of which was taken from the hospital from which the patients were transferred, when it shut down; a ward that dealt with breast cancer chiefly). I told him the correct name, and he seemed relieved. “Ah, that explains things,” he said. “I couldn’t understand why they had put her in Lawnmower ward when she doesn’t like gardening!”

High standards

My last humorous tale occurred in Recovery, just before I left to go on maternity leave. A patient had come out of Theatre after having had a Hickman Line inserted, and it was routine that they had an xray, in Recovery, to ensure that the line was in the right place. This particular patient was a very frail, elderly man, and he was on a new-fangled profile bed, to prevent pressure sores. This bed was quite broad, so we put some extra mobile screens around it for privacy. The radiographer wheeled in the xray machine and set it all up for the man to get his film. There were no other patients in at the time, and the staff were all ushered out of the room whilst the xray was in progress; but we could watch the still sleeping man through the window in the doors.

The radiographer was all set and ready to start the xray, when all of a sudden, the bed started heading heavenwards. The patient was hooked up to drips and monitors which all started alarming as the tension on the tubing and cables got too tight. Still the bed went upwards, and the patient remained asleep. Then, suddenly, the bed started going down, down, down, down…….and just as it was about to start its ascent for the second time, we all went in to find out what was going on. In actual fact, the radiographer had accidentally knocked a “demo” button on the bed as she was leaving it, after setting up the xray!

Eventually the xray was taken, the line was fitted properly, and the man woke up – unaware that his care in recovery had been of an unusually high quality……

Then of course, there WAS that surgeon who was the double of Mr Bean, who used to scare the patients rigid on his pre-op visits, especially when he told them he would be doing their surgery…….

I’m going to miss nursing, there is no doubt about it. As it is an extremely stressful job, and is getting more so, finding the humour in the smallest things is important. I hope you have enjoyed a few of the gems I have shared with you.

Alternative About Me

Never, never, never give up; my cancer story (orig published in Aug 2011)

July 31, 2012January 20, 2023 June L

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 21^st 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 21^st 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 21^st 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 21^st 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

Alternative About Me

The Way I See Things Is…..

July 31, 2012August 18, 2023 June L

I didn’t realise that I perceive the world in a different way to the majority of other people until fairly recently. I thought everyone saw colours in music and letters. I thought everyone could taste the flavour of names. And it never dawned on me that the “Average Joe” didn’t think of individual letters and numbers as each having a distinct personality. It was only after I made a comment about a certain piece of music being a certain colour that it was pointed out to me that evidently things were not perceived by others as they are by myself. “June, are you OK?” was the comment. Then I discovered this “thing” had a name. Synaesthesia. In Greek it means “a union of the senses”, and according to Scholarpedia, it affects 4% of the global population. It is not a neurological condition, but is often seen as a “gift” that only a few people can take advantage of. So in a way I’m kind of special – or so I like to think!

Trawling research on the web, there appears to be 54 types of synaesthesia, appearing equally in men and women. There are also suggestions of a family link. I have to admit as to not having read an abundance of material about it, but I seem to have several different synaesthetic experiences that occur in different ways in everyday life. Some people have asked me to share these, so here goes……and honestly, I am not mad!

Colour and Personality associations

I have always thought of days of the week as colours: Monday is Yellow; Tuesday is Orange; Wednesday Green; Thursday Purple; Friday Pink; Saturday Red and Sunday is Blue.

I have very strong likes/dislikes of colours, and have always liked Wednesdays the least, as I really don’t like green. Sometimes, without thinking about it, I will wear clothes whose colour corresponds to the day of the week – at least when that happens I don’t forget what day it is!

As well as days of the week having colours, individual letters and numbers have their own colours. This used to make spelling tests and maths a lot of fun when I was a child, as I seemed to form a rainbow of colours on the page when I wrote things down. To further complicate things, these individual letters and numbers each have a distinct personality as well….

NUMBER	COLOUR	PERSONALITY
1	Red	Fun, light-hearted
2	Blue	Naughty/mischievous
3	Yellow	Drunkard
4	Green	Elderly
5	Orange	Happy, slightly smug
6	Pink	Nervous/highly-strung. Easily scared
7	Purple	An Academic
8	Black	Banker
9	Brown	Bored teenager
0	Grey	Ghostly/shadowy

And the same with the alphabet whether in upper or lower case:

LETTER	COLOUR	PERSONALITY
A	Red	Perfectionist
B	Magenta	Shy
C	Orange	Lazy
D	Light blue	Easily bored
E	Yellow	Fitness freak
F	Indigo	Flippant
G	Silver	Self-confident
H	Dark Green	Earthy
I	Grey	Snob
J	Gold	Outgoing
K	Purple	Untidy
L	Pinky orange	Sleazy
M	Green	Bipolar/Moody
N	Dark Grey	Geeky
O	Peach	Singer
P	Beige	Rebellious
Q	Terracotta	Dependent
R	Olive Green	Adventurer
S	Dark blue	Jolly
T	Baby pink	Pretentious
U	Lilac	Caring
V	Dark red	Aristocratic
W	Pink	Excitable
X	Turquoise	Eccentric
Y	Amber	Introverted
Z	Black	Sad

Strangely enough, in my case, individual letters and numbers do not have their own tastes – whereas the words they form often do. More of that later.

I do have an irrational dislike to certain letters of the alphabet…. I would refuse to buy a used car if it had a P or U on its number plate. Unfortunately for me, the family car we currently have was sold to us with a temporary number plate on it – and when the original was put back on, it had a P among the letters. It may seem crazy, but it gets on my nerves!!!

Are you still with me? It gets better…….

Seeing sounds

When growing up, I wasn’t aware of this branch of my synaesthesia. Being a child and young adult who listened to 80s/90s pop chart music via the radio, this link was absent. Synthetic drum machine music didn’t evoke any colour associations; neither did Heavy Rock. In saying this, however, I do recall Nena’s song “99 red balloons” confusing me, as the song was yellow in my opinion. New Order’s “Blue Monday” definitely was not blue – it was an emerald green colour. It was not until I started listening to classical music that the whole kaleidoscopic spectrum of patterns made themselves evident. For instance: Taverner’s “The Lamb” and Vaughan-Williams’ “Fantasia on a theme of Thomas Tallis” are what I call sunset songs – when I hear them I visually see orange, golds, pinks and a hint of navy blue weaving mellow patterns in my mind. Paganini is a light blue, summer sky with wispy white clouds. Vaughan-Williams’ “The Lark Ascending” is a definite green piece – and because of its colour I don’t like it! Karl Jenkins Adiemus pieces are composed of most colours in darkened hues, but never black, with the odd slither of gold or silver. Beethoven’s music tends to be darker; Mozart produces playful pastel shades. Mussorgsky’s Pictures at an Exhibition is of the Cubism art genre with the three primary colours only featuring, in bold form. Einaudi is similar to Mozart – bright and pastel shades of the lighter colours in the spectrum, often in a gingham-style pattern. More on Einaudi later – he is more complicated! In fact, I cannot drive my car with classical music playing, or else I wouldn’t be able to “see” properly, and would likely end up in a crash!

Aside from classical music, the only other obvious colour – music synaesthetic experiences I have had have been whilst listening to the rock group Pink Floyd, which is interesting as the Founder of Pink Floyd, Syd Barrett, is thought to have been a synaesthete. The “Dark Side of the Moon” album is an extraordinary cacophony of pink, purple, burgundy and blue with other bold colours darting in and out of the patterns – but these colours are always blurred.

In an orchestra, groups of instruments emit different colours – I also tend to group them into temperature….don’t ask me why!

INSTRUMENT	COLOUR	TEMPERATURE/MOOD
Violin	Pale blue	Cool/lightweight, wispy
Cello/double bass	Brown	Tepid/Stark, earthy
Flute	Green	Cool/lush, damp
Oboe/clarinet/bassoon	Olive green – dark green	Cool/damp, dreary
Trumpet/trombone	Dark red – crimson	Warm/outgoing, self-important
French horn/tuba etc	Red	Cool/ sharp
Piano	Pastel shades/gingham pattern	Warm
Harp	Gold/orange	Warm/flowing
Xylophone	Silver	Cool/Sharp, frosty
Choral	Dark yellow/orange/pink	Warm
Guitar	Yellow	Warm/sunny

Seeing sound is an extremely relaxing and pleasant experience (unless one is driving) and I wish that everyone could share it. It’s like having your own son et lumiere show in your mind!

Tasting sounds

Tasting words and sounds doesn’t happen to me as much as the seeing sounds does. On listening to an Einaudi album recently, every piece tasted of a different pastry, cake and even lemon meringue pie! By the end of the album I felt as if I had eaten a whole baker’s shop, and didn’t want any lunch. That has not happened on any other classical album, yet, but it was pretty amazing at the time!

Names and how I experience them

My facebook and twitter pages are ablaze with sounds and tastes just by looking down my friends’ lists. Some names are tastes, some are sounds, some are moods or colours and some are objects. Some are pleasant, some are not. Most are rather silly and amusing. Here are some examples. If your name is among these, please do not be offended by how things appear to me – I can’t help it! (I’m picking names at random from friends’ lists here….).

The name Graham tastes of liver, whereas Lesley is freshly squeezed fruit juice. Lucy is a squeaky supermarket trolley wheel, Sheila has the sound of a lavatory flushing (sorry!). Emma is a misty summer morning at dawn, while Eve is a dark wintry evening round the fire. Steve is bass guitar, Sam is a tambourine. The name Dave conjures up corduroy material, whereas Darren is plastic and Emily is lace. There is no rhyme nor reason for these associations – it is how I experience the senses that make up the names. So if your name is Sarah, I would remember you as a hairbrush. See, I warned you some of them were ridiculous!

So, in a nutshell, that is my “take” on the world. I see all this as a positive thing – in fact, if my synaesthesia was somehow taken away from me, I would miss it hugely. I only wish more people could enjoy the world with this “extra sense” – it brings things into a whole new dimension. And no, I’m not mad!