Tag: leukaemia

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Proof of Life

nataliegist

Somewhere in this country is a man.  A young man.  Aged twenty seven.  Actually, probably twenty eight now – I have no idea when his birthday is. I don’t know where he lives.  I don’t know what he does for a living.  I don’t know what he looks like. If he’s married.  Or has children.  Likes football.  Doesn’t like football. Likes shoes.  Chocolate.  Can’t stand cheese. The only other thing that I know about him is that he is of the same tissue type as a forty one year old man.  I know nothing else about him.  I don’t even know his name.

Nearly a year ago this mystery man agreed to be a stem cell donor.  He must have already had it in his mind that one day he might need to agree to this as he was already on the register.  And when the register was searched for a match for the forty one year old man, he popped up.  Doppelgangers.  Or even double-dickers as a confused child once thought. A ten out of ten match. I am not a doctor or a scientist, but I was always taught at school that if you get ten out of ten then that is to be celebrated.  And the people who know a lot more about it than me thought so too.  So we celebrated. Cautiously.

I presume that what next happened went loosely like this: said man was approached by several doctors, possibly in a lot of PPE at the time as the nation was in the teeth of the second lockdown.  He was advised that he was a double-dicker for someone needing a stem cell transplant.  I assume he was then asked if he would be prepared to be a stem cell donor.  Then he was probably given a lot of booklets and details as to the procedure, endless forms and a lot of people coming to see him to explain the forms. As a matter of procedure, I expect he was told a lot of things, but chiefly; a list of risks even more terrifying than the leaflet in a packet of paracetamol, possible outcomes, no one was allowed to know anyone else and no money would be changing hands.

Whatever happened between being identified as a match and being given a lever arch files of papers, this man agreed. As with his donee, I presume that he knew very little about the person he had been asked to help save.  He could not have known that his doppelganger was due to turn forty one in February.  That he lived in a village.  Had just moved into the house, in fact. That he was an Estates Manager.  Married.  Two children with another on the way.  Loved Spurs.  Disinterested by shoes.  Even less interested in chocolate.  Didn’t like bananas.  He didn’t even know his name. 

I don’t know his reasons for agreeing.  Maybe it was the opportunity to give a gift that only he could give to that one person. A gift that no one who loves and knows him could have given.  Perhaps an opportunity to do something special that comes along only once in a lifetime. Even just to get out of work for a couple of days. Whatever his reasons, I strongly suspect that at the point of agreement, one person advanced towards him with a biro.  And then several more people advanced on him with a buffet of needles.  He faced the pokings, the proddings, the general inconvenience of going back and forth to hospital and the risk to his own person.  All for someone he didn’t know and would never know. No money, no thanks, no recognition.

He will never know that the man’s family and friends were beside themselves at the prospect of losing him.  And the relief in knowing that not only had a donor been found, but, crucially, he was willing to proceed.  It is probably better that he will never know how they joked about a bevy of clucking middle-aged women turning up to his house or his place of work to thank him adoringly and tend to his every want and need ad infinitum. He will never know that because of what he did that he gave precious time.  Time for the man to talk to his wife.  His children.  His mum.  Time to hold his newborn child.

He will never know that he gave not just the man, but all those who love him, hope. Hope in such a time of darkness that it is hard to believe that life can ever be good again. He will never know that the leukaemia hid.  That after everything he did, in spite of everything everyone did, that it came back.  The crushing truth that even if everyone is pulling in the same direction, together, some storms cannot be weathered.  And we will never understand why. The comfort in our grief is that an entire stranger was prepared to give literally something of themselves and expect nothing in return.  Not a note.  Not a thank you.  Not a face. Not even a name. And they did it anyway.

If you are interested in joining the stem cell register, you can find more information here:

www.anthonynolan.org/

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Eulogy

nataliegist

Thank you for coming today.  I know that some of you have come a long way and not all of you are in the best of health. We very much appreciate your support and you being with us.

First we would like to publicly thank the teams of medical staff from our NHS for caring for Mum.  In particular, Dr Macmillan, Dr Fox, Lyn and the teams of the Haematology Department at Nottingham City Hospital.  They never gave up hope – they always tried everything.  And succeeded for nearly forty years.  The gratitude that we owe them can never be adequately expressed.  If you would like to make a donation to the ongoing and pioneering work of the Nottinghamshire Leukaemia Appeal there is a box for you to do so, and we will make sure it gets to them.  Thank you.

Our mum, Kaye, was born on 28 March 1948 in Leicester, a daughter to our grandparents and a younger sister for her brother. My uncle has told you about Mum’s younger days. She was a terror. Mum went to secretarial college at fourteen and at sixteen was sent out into the working world.  She had many jobs as one might expect, but one of her favourites was as a secretary in CID which she left in late 1974 just before my older sister was born.  I came along just over a year later and then seven years after that, much to our father’s surprise, but not our mother’s, my younger sister appeared.  It was during her pregnancy with my younger sister that my mum was diagnosed with leukaemia aged thirty four.

Sadly my parents divorced some years later.  It was hard for Mum to be a single parent.  She went back to college to upskill after having been at home for many years.  Having learnt to type on an old-fashioned typewriter, it took her some time to learn that there was no need to bash the living daylights out of a computer keyboard.  Mum then started a job at college, which was where she worked in various departments until she retired.

After many years Mum met our stepdad, Rob.  One evening after they had been seeing each other for a while he told her that he couldn’t see her anymore.  He said that he had been diagnosed with leukaemia and that he was going to die.  In a response that he was definitely not expecting Mum replied that she had never heard such nonsense, she had had leukaemia for twenty years and she wasn’t going to die.  They married at Gretna Green. Their time together was short and as many of you know, Rob did lose his fight against leukaemia.  Not as quickly as anyone thought he would, in large part due to the medics at Nottingham and another due to my mum’s love and care for him.

Being widowed did not come easily to Mum- she never enjoyed being single.  Nevertheless she continued to go out with friends and have holidays.  Mum had some enduring friendships – Sue, Val and Shirley are to name a few who will have many memories.  One friend, Yvonne, recalled a trip to the States when they got absolutely soaked on a boat trip. Rather than rush for a towel, Kaye pointed out to Yvonne and everyone else on the boat that she could see the pattern on Yvonne’s underwear. Tactful as ever.

Kaye had a lifelong love of animals.  She loved horses and riding when she was younger.  She always had a furry heartbeat or two around the house to keep her company.  She also loved reading – particularly history books about the Wars of the Roses.  Mum had a busy, restless, mind – it never stopped.  And until she lost her hearing, Mum also loved music and dancing.  The Beatles,  Queen – she felt the loss of Freddie Mercury profoundly. She largely failed in her attempts to get us to do the positively ridiculous ‘Hippy Hippy Shake’. And there is a reason me and my sisters know all of the words to Barry Manilow’s songs and it is not because we are fans.

Mum delighted in being a grandparent.  She didn’t even mind a honky nappy.  She was so pleased to have had the chance to hold little her newborn grandson and bounced with happiness at holding a new little life.  She once told me that having grandchildren made her feel like her life had been worth it.

I don’t want to give the impression of our mum as a saintly figure because we all know that would be an enormous porkie – she was often bad-mannered, bad-tempered and badly behaved. She wasn’t always entirely in command of her vehicle.  During a power cut when was a my younger sister was a baby the lights came back on for Mum to discover that she had the bottle in the baby’s ear.  I was once woken up by a loud bang and found that Mum had come home the worse for wear and bumped her head attempting to negotiate her way into the bathroom.  Much to my horror, either forgetting or not caring that she wasn’t a child of the sixties anymore when in her late forties Mum bought some leopard print hotpants.  I didn’t even begin to delve into when or where she thought she was going to wear them.  I am relieved to say that they never left the house.  On another occasion at my older sister’s secondary school a Maths teacher had got the wrong end of the stick about an ongoing debacle with another pupil.  My mum was exceedingly keen to appraise her of the full facts.  So keen, in fact, that the Headmaster had to stand between her and the teacher concerned.  A few days before she died, a junior doctor was trying to take some blood and my mother told her to go and find someone who could do it properly.  The doctor looked at me pleadingly to which my response was that I had no sympathy for her as that was just the sort of encouragement I had had for forty five years.  When it came to my mother – if you were a goose who had upset her, if “boo” was all that she said to you, then you should have considered yourself very lucky indeed.

Mum was also fearless.  And peerless.  She faced numerous rounds of chemotherapy over many years.  Stem cell transplant, radiotherapy.   You name the drug for her condition and she probably had it. I wouldn’t say it didn’t bother her, but she did just get on with it.  We never saw her cry about it. The alternative was to give up, and that wasn’t an alternative to her.  So she never gave up. It was that simple. “Unique” is a word that has come up a lot in speaking to people since Mum died.  As I said, peerless.

Kaye lived her life exactly the way she wanted to.  She never let anything or anyone stop her from going where she wanted to go, seeing who she wanted to see, doing what she wanted to do or saying what she wanted to say.

When it became apparent that there was to be no escape from this particular scrape, Mum said that she loved us and was going to miss us all terribly.  We don’t doubt that she loved us.  But I hope the bit about missing us isn’t true.  I don’t want her to miss us.  I want to believe that Mum can go wherever she wants, whenever she wants, with whoever she wants.  Where Freddie Mercury is borrowing her leopard print hotpants, Barry Manilow’s Greatest Hits are on endless repeat and only she can hear them and my Nana and Grandad are waiting to call her home.

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Choose Life

nataliegist

 

wham

I want to take you back to the eighties. And if you’re not old enough to remember the eighties, then let me tell you about it, you’ll be horrified. Shoulder pads were in. Power suits with big shoulder pads were definitely in. As was big hair. And when I say big hair, I mean big flicks and lots of hairspray to stop it from moving a millimetre in a force nine gale. Highlights. Blonde ones. Perms. All for men as well as women. Metrosexuality was something that was well underway in the eighties, although I suspect that most men would have balked at the large bows that Princess Diana wore.

There were videos, personal stereos. And a lot of people were desperate to know who shot JR – I won’t spoil it for you if you don’t know or can’t remember.

The height of automobile sophistication for the thrusting young gentleman was a Ford Capri. My parents and grandparents drove a Ford Alpine, which wasn’t the height of anything and probably the depths of something, but it was a lot more than lots of people could afford at the time. And infinitely better than waiting for a bus to the city (they didn’t go anywhere else) which took about two hours and came twice a week.

In 1983 it was made law for people to wear seatbelts, following eleven previous attempts. I remember there being the most almighty row about it and people getting very het up about the infringements of civil liberties. Most cars at that time only had seatbelts in the front seats so children remained free to brawl with their siblings on the back seat entirely unrestrained, which I also remember doing. Babies could be held in someone’s arms. It only became compulsory for adults to belt up in the back seat in 1991.

If you wanted to get around on your bicycle, as most little people did then, then what you wanted (but probably didn’t have) was a Chopper. This had an extra large seat which allowed you to give a croggy to your friends with the added bonus of being able to see where you were going as they were behind you rather than perched on your handlebars.

As far as music was concerned in this country; Duran Duran, Spandau Ballet, Madonna, Tracy Ullman. Wham were big. And I was going to marry George Michael. He was handsome, talented, he could sing, he could dance and he seemed like a thoroughly lovely person. Of course he was gay, but that hadn’t occurred to me (or anyone else it would seem, except I suspect it had probably occurred to George), as I was only little. Besides, as soon as he met me, he would want to marry me, I was sure of it.

Some time in early 1983  a woman was at a hospital, wearing her dress with her large bow on it as was the fashion then for the pregnant woman about town. It seemed that pregnancy was still something a woman felt she had to hide then. As if it was some mystery best left to women to get on with behind closed doors.  Nevertheless she would be frowned upon by society if she didn’t do it and vilified if she didn’t want to do it. This particular woman was perfectly happy to be expecting her baby, and had actually left her job when she had her first child eight year’s previous, because that was what women did then and no one thought that unacceptable.  She had no need of a perm for her hair was as curly as curly could be, and the most beautiful raven colour. She had spent most of the seventies trying to straighten it and dye it blonde. Aged thirty four she was considered rather too old to be having children and something of a high risk. She had had some blood tests (anyone who has had a baby will know that the minute anyone medical sees you they have an uncontrollable urge to stick a needle in your arm and drain some blood from you) and was there for the results.

The woman was ushered into a room to see her doctor. She sat down and waited patiently. The doctor looked up from his notes. He told her that she had leukaemia.

Then he sent her home.

I sincerely hope that the doctor concerned no longer practices, or has at least practised their bedside manner since that day. The woman was something of a mess; was this serious? It sounded serious. Was it going to affect her baby? How long did she have? She had two other children – were they going to be left without a mother? Her partner telephoned the hospital and asked for someone to have a conversation with him and his wife because they had a few questions.

Thankfully the doctor that they saw on this occasion was rather better at his job. He answered all of their questions as best he could. He was clear that it didn’t affect the baby. But the one that everyone must have when receiving this sort of information: “how long have I got?” he didn’t really have an answer to. It was quite unusual for this type of leukaemia to have been found in someone so young and he wasn’t sure how it was going to play out. Other doctors were suggesting that they treat her, but he felt that watching and waiting was the best option at that time. So they watched. And they waited.

I would now like to take you forward to Sunday 8 January 2017 and recount the following telephone conversation:

Woman A  :  I just wanted to let you know that I am going to London for a couple of days – I have never seen The Tower of London – and I want to remind you where my Will is and where all of my papers are.

Woman B  :   Oh right – is this a bucket list type thing? And is it entirely necessary for you to tell me where your Will is every time I speak to you, Mum? It is London. London. Not Afghanistan. Are you planning on popping off?

Woman A  :  No, but they can’t get on top of this thing in my lung, and I just worry about it.

Woman B  :  I know, but try not to worry. We’ve been here so many times before. And there are a lot of steps at the Tower, for it is a tower, and the clue is in the name. There are plenty of benches.

Woman A  :  Oh yes, well I will get [friend] to sit down – you know she has a gammy knee.

Woman B  :  [annoyed now] I wasn’t getting at [friend’s] gammy knee. She can drag it along. I was suggesting that you sit down as you get tired.

Woman A  :  [in the manner of Mrs Bennett] Oh I’ll be fine. I’ll give you a ring when I get back.

You don’t have to be Sherlock Holmes to deduce that that was a conversation between me and my mother. Annoying the crap out of me as usual. My mother was the woman who was sent away from the hospital in 1983. And the baby was my younger sister, who is now a mother herself. The doctors watched and waited for twenty years. And I have lost count, and I genuinely mean that I have lost count, of the amount and type of treatment that my mother has had in the past fifteen years on the NHS. She has sat through eight courses of chemotherapy alone, I believe. She has met lots of people, some she has sat with chatting whilst having treatment for a few weeks, and then she hasn’t seen them again. She said she always wonders how they are and if she will bump into them again. All the time she has been hooked up to the drip by someone who worries that they have bruised her veins again. Tea has been served to her by a lady who is always polite and smiles. Her bed has been changed by someone who, in broken English, asks how she is and cares about the answer. All the time, her treatment authorised by a doctor who is now down to his last options and is desperately trying to find a way to save her life. So I get quite cross when the NHS is bashed. In my admittedly limited experience, doctors and nurses want to save lives and patients, whatever problems they may have, want to live, or at least, don’t want to die.

In spite of the efforts of medical professionals, many factors must influence someone’s survival. Up until the past few years, my mother has been lucky enough, if you can call it that, to have a disease that is indolent. Some people, lots of people, are not that fortunate and not given that choice, however brave they are and however much they want to live. But I do think that in my mother’s case a pig-headed unwillingness to look facts in the face has seen her through. She’s British for God’s sake. It’s what we do! Whatever her faults are (and believe me she has many) she always decides to just get on with it. She will take her dog for a walk, and it matters not a jot to her that she will struggle and have to go home because she simply cannot walk anymore – the dog needs a walk dammit. Stuff the steps at the Tower of London – she’s going and she doesn’t care if it takes her all day to get to where Henry VIII’s suit of armour is – she wants to see it. In short, after that awful day in 1983, whatever thoughts went through her head, I like to think that when she came home on the bus, that she was listening to the Wham Rap on her walkman. And whereas some of us would like to think that we would plump for the less refined attitude of “fuck it” on the receipt of the news that she had just been given, she decided to hold her head high.  In a moment of weakness, entirely uncharacteristically and undoubtedly because no one else could hear it, she decided to take some advice, and it was George’s.  No, not to Wake Me Up Before You Go Go.  He got that wrong – no one wants to be woken up before someone go-goes anywhere unless it is to bring them a cup of tea.  No, it was advice that was as good today less than a month after we mourn his loss, as when he bounced around on Top of the Pops as a handsome young thing:  choose life.