Patient Case Study: James (Cambridge)
James was diagnosed with Mixed-phenotype acute leukaemia when he was 1 years old.
‘It wasn’t my time.’
“In my mind I always thought: ‘I’m not finished yet’. I always felt that there was a lot more of me to come. This wasn’t my time, and that is what I thought, right from the start…”
The inspirational words of Fiona Macnab, detailing her immediate reaction to being diagnosed with Acute Myeloid Leukaemia in July of last year, just months shy of her 60th birthday.
No sense of ‘why me’? Never any anger, or hurt. Instead, a fierce determination and fighting spirit, and complete and utter trust in an array of clinicians whom effectively held her life in their extremely skilled and dedicated hands.
Now, thanks in particular to Professor Charlie Craddock CBE, the co-founder of Cure Leukaemia based at Birmingham’s Queen Elizabeth Hospital, and Dr Beth Harrison, from the University Hospitals Coventry and Warwickshire, Fiona is in remission.
Since that day of diagnosis, she has remained so appreciative to all of those from the medical profession who have helped her through, not to mention an anonymous 34-year-old male donor somewhere in the UK from whom Fiona received a successful stem cell transplant back in January.
And also, throughout it all, that incredibly positive attitude.
Spend some time in Fiona’s company and it is very clear that she is indeed one of life’s fighters, an immoveable force with an unshakeable spirit, and that was the case right from day one.
It was just over 15 months ago that Fiona, a School Business Manager in her home city of Coventry, had decided to return to giving blood, just as she had many years earlier in receiving her Silver Award for donations prior to having children.
But unfortunately, or perhaps fortunately as events would eventually transpire, she wasn’t even to get past the initial pin-prick haemoglobin test, which returned abnormal results. Indeed, that decision to restart giving blood may well be one which has ultimately saved her life.
Just taking a step back to the build-up to that day, were there any signs, any symptoms, that things were not completely right?
“Not really,” Fiona replies.
“I was just bobbing along, very happily, and life was good. “I was in a relatively new relationship and we were enjoying the great outdoors – walking, holidays, all the usual things.
“I did start to feel more tired, but just dismissed that as the fact that we were approaching a busy time at school before the summer holidays, and I am also getting on a bit!
“I was just thinking that I’d have a good rest through the summer and would then feel a lot better as a result.”
There followed the attempt to give blood and, after a couple of checks on the day, a follow-up doctor’s appointment and prescription of iron tablets due to those tests indicating anaemia.
That medication had no effect, in truth Fiona felt even worse, and so two urgent appointments were then booked with haematology and gastric consultants respectively.
The day of diagnosis was now just around the corner, but, even then, Fiona never allowed herself to become unduly concerned.
“The haematology results came back first, and for some reason my partner Mark came with me to see the consultant,” she recalls.
“Normally I would just have trotted along alone to the appointment, in my own little bubble, oblivious to the prospect of anything serious going on around me.
“I remember bizarrely thinking that I must have picked up some form of random virus or sub-tropical disease!
“We went in to see the consultant, and straightaway he said he thought it was classic ‘MDS’ (Myelodysplastic syndromes).
“That is a range of cancers across a broad spectrum, from what you might say are the relatively minor ones which can be treated with medication, through to the far more serious at the other end such as leukaemia.
“He ran some more tests, and sent us away for 40 minutes with a leaflet to read, where we just had a coffee and a chat.
“It is always better to know what is happening – the unknown is more worrying – so at this point, I was still relatively calm.
“It was when we went back in that straightaway – and Mark said he was looking right at me when he said it – the consultant told me it was indeed at the far end of the MDS spectrum and that it would become leukaemia.
“O-k then,’ I replied, ‘what are we going to do now’?
“He said that we were going to need to take action straight away, and he also said the words that I clung onto right from that moment – ‘we are looking for a cure’.
“Once he had said that never ever have I asked again if I am still on the road to cure or if we are looking for anything else.
“I have never taken any diversion, and that, for me, was how it was going to be.
“I was going to put my complete trust in all these people who were trying to help me, and I was going to get better.”
Fiona was quickly admitted for blood transfusions before being sent home for two-and-a-half weeks ahead of returning for a first, and lengthy, dose of chemotherapy.
New partner Mark was quickly thrust into the position of handling Fiona’s ‘biggest worry’, namely breaking the news to her three grown-up children, who had only lost their father four years previously.
“Myself and their Dad had separated back in 2000, so it was a major concern for me in terms of how they would take the news,” Fiona explains.
“I couldn’t tell them because I was admitted to hospital straightaway, and I am their Mum, so I just wanted them to know I was o-k and not to think the worst.
“Mark got them together and did really well in telling them and, as soon as I spoke to them afterwards, I knew they had taken it all on board.
“I said it was not going to be easy, but we would be alright, so let’s be positive, and I think they took their lead from me from there onwards.”
Under the care of Dr Harrison, from the University Hospitals Coventry and Warwickshire, Fiona underwent two courses of chemotherapy, the first necessitating a hospital admission in isolation lasting around six weeks and the second somewhat shorter.
In between times she was at home to mark her 60th birthday in October of last year, although admitting it was a very different celebration to normal.
So how did she feel during those spells of chemotherapy and the treatment? Angry? Frustrated? Frightened? A sense of ‘why me’?
“For me it was always a case of ‘everything will pass’,” she says with incredible calmness.
“No day was really completely awful from beginning to end, and if I felt a bit rubbish, or was a bit sick, I would go to sleep and wake up feeling better.
“I was on trial drugs, and it was strong stuff, so there were days when I struggled and couldn’t even keep water down, but those days were few and far between.
“I feel really fortunate that, for the most part, my body could withstand the drugs and I feel like the luckiest person in the world for that.
“I would see other people who were really struggling from the same drugs and I know that some didn’t make it through, so I am remarkably fortunate.
“In that sense there was never a thought of ‘why me’…not once.
“The only thing that ever came into my mind was thank goodness it is me and not my children or grandchildren.”
Fiona continues: “All the staff were fantastic as well.
“They were like a family to me, so professional and so good at everything that they did.
“Going into clinic felt like I was going back into the arms of someone that loved me and, even on the odd occasion I was rushed in as an emergency patient, I felt very secure there.
“Perhaps I was being naïve, perhaps it was all a bit more serious than that, but I was happy in my naivety, and if I wasn’t quite right I knew they would fix me up and I would go back home.”
It was that unshakable trust in those plotting her recovery that meant Fiona was always willing to do whatever it took to try and get better.
When a stem cell transplant was mentioned in the very early stages of treatment there were never any questions.
More a case of if that is what is needed, then bring it on! Both of Fiona’s sisters Siobain and Morag were tested but unfortunately were not found to match. And so, the hunt for an unrelated donor began in earnest.
Then on one day, whilst visiting a Garden Centre with her sisters, Fiona took a call from a transplant co-ordinator to say a match had been found.
“We must have looked very strange with lots of hugging and tears in the middle of the geraniums!” Fiona recalls.
She would check in at Birmingham’s Queen Elizabeth Hospital on December 28thfor some more chemotherapy ahead of the transplant date of Friday, January 5th.
It was ironic, perhaps could even be described as Karma, that this news came so shortly after Fiona had been told she was being taken off the donor register after 20 years by the Anthony Nolan charity, by virtue of having turned 60.
The date was set and the days went by. Christmas was quiet, New Year’s Eve even more so, toasted with non-alcoholic champagne in a hospital bed whilst watching firework displays out of the window, but to an extent, Fiona didn’t mind.
She was still ‘looking for a cure’, and the prospect of the stem cell transplant, under the guidance of Professor Craddock, was now a real opportunity.
“Professor Craddock was just amazing,” says Fiona.
“I remember the first time I went in to meet him.
“However I was feeling, I would always dress up for my appointments at the clinic and go in with full make-up – even if I was shuffling in I would do it in heels! That was something which was important to me.
“We went in to meet him and I think my mouth was just hanging open in awe, listening to him describing what lay ahead.
“He has such a presence in the way he talks about everything and I will be eternally grateful both to him and Dr Harrison.
“I am blessed to have had those two treating me along with the support of everyone else around them.
“They are all so knowledgeable and caring about what they do and it really does show you another side to life.”
The stem cell transplant took place as planned, and the early signs were positive, even if, at times, Fiona suffered her worst moments since being diagnosed with the disease.
On one occasion she admits to feeling ‘discombobulated’ and sufficiently poorly to have to call Mark in to return to the hospital to be by her side.
On another, there was just sheer frustration at what she perceived as such slow and painstaking progress.
“To be honest I have never really cried about the leukaemia at all,” she explains.
“But I cried in frustration when the recovery after transplant came with such small steps.
“I could have kicked somebody at that point, although I wouldn’t have been able to catch them because there I was constantly, just shuffling along.
“One of the medications gave me a terrible tremor and I couldn’t write and during those moments I thought: ‘Is this going to be me, forever?’
“I felt like I was 80, and wondered if I would ever get back to how I was before, living life and full of energy.
“I kept crashing out and falling asleep as soon as I sat down.
“And yet…I can’t say I ever sat there with my head in my hands too many times, even with all that frustration.
“Little by little I started to improve and, as time moved on, I turned the corner.
“Walking to the shops, driving again, my hair growing back, gradually I started to feel like me again.”
Positive signs, but by now D-Day was approaching, the day when that tentative recovery would be put to the true test, quite literally.
This test would come 100 days after the transplant, in April of this year, with the target set of 60 per cent of the donor cells having ‘taken’.
“I’m not going to lie, that was probably when I felt at my most anxious,” says Fiona.
“Everything had been going to plan, it felt like all the right indicators were there, but it was just that question of what would happen if the results weren’t great?
“Competitive me’, I wanted to power right past the 60 per cent mark, and having gone through the test there was a three-week wait for the results.
“When it came back as 96 per cent I was the just happiest person in the world, as you can probably imagine!
“I still have the results chart with the figures on, and one day I will include that when I put together a little memory board.
“It was such a relief, and I think that was the day, even with my positive attitude beforehand, that I really thought it was all going to be o-k.”
So now, in remission, Fiona’s care is shared between the Queen Elizabeth and Coventry hospitals, with appointments set to be required less regularly moving into the future.
Back at work on a part-time basis, as she sits on the sofa with Mark having now moved to a new house in Lichfield, there are many plans afoot to make the most of a fresh lease of life and new-found perspective.
Having already enjoyed stays in Wales and Dorset, and further afield in France and Belgium, permission to fly again will see the couple head to Kos in October.
There are plans for more fun with children Alastair, Rory and Grace – including a trip to Venice with the latter – not to mention the joy of spending time with three grand-children, with another due next month.
Christmas is likely to prove a more joyous occasion this time around, but for Fiona, there is no sense whatsoever of having missed out on anything or thought of life having put been on hold for the last 15 months.
More a sense of relief to have come through it and emerged at the other side.
“You have to look at the positives,” she insists.
“I hold my children just a little bit tighter now, and I have had more time to spend with my grand-children during my recovery.
“I find time to do things that maybe I wouldn’t have done before, and, looking back now, I don’t think I could have visualised where I would be today when I think about that New Year’s Eve in hospital.
“I certainly wouldn’t recommend what has happened to me as therapy, but I have done alright, and everyone tells me that my personal attitude towards life will have played a massive part.
“I have always been a positive person, and I was just able to get my head around it straight away, and put my trust in some fantastic people who knew exactly what was needed to make me better.
“There are people who were in far worse situations than I was.
“Though my relationship with Mark was relatively new at diagnosis, it was secure, and I also had my own home, children all grown up and living independently and financial stability, so that I didn’t have any other responsibilities or sources of stress to contend with.
“I didn’t choose to have leukaemia so I don’t think I was terribly brave, and I certainly don’t think of myself as a warrior or anything like that.
“Stick me on the top of a building and I will still feel as sick as ever from a fear of heights!
“I’m not brave, I just faced it as best that I could.
“And just like I said, right from the start, this just wasn’t my time…”
James was diagnosed with Mixed-phenotype acute leukaemia when he was 1 years old.
Patient Matthew talks openly about what is keeping him motivated during "the hardest time of his life".