At the age of just 27, Chloe was diagnosed with Hodgkin’s lymphoma, and learned that she’d need a stem cell transplant to treat it. This is her story:
While studying for a professional qualification alongside working my full-time job I started to feel almost constantly under the weather, with two little lumps popping up in my neck. (The situation wasn’t helped by the fact that I was on crutches following a skiing accident which I just couldn’t seem to recover from!)
I sat the work qualification and failed it, not understanding why I was just so tired and couldn’t manage to do things like I should have been able to. My knee surgeon refused to operate until I’d had the lumps checked out, so I went to see a doctor and the appointments started snowballing.
And then the bottom fell out of my world.
My Hodgkin’s lymphoma diagnosis
On a beautiful summer’s day, two weeks after my 27th birthday, I sat in a chair in Guy’s Hospital and heard the words, ‘It’s what we hoped it wasn’t’.
I was told that in some ways I was lucky: it was Hodgkin’s Lymphoma, one of the most treatable cancers, and the prognosis was good. I took a leave of absence from work, geared myself up for the six months of ABVD chemotherapy, and got through it all.
Then I went for the appointment I’d been waiting for, where they would tell me it’d worked, I was cured, and life could go back to normal.
Only things don’t always happen the way you’d want. My cancer, it seemed, was stubborn.
My stem cell transplant
I extended my leave of absence from work and another type of chemotherapy was tried, this one wiping me out for days at a time. My 28th birthday passed in a blur of sickness and exhaustion, but unfortunately this D-HAP chemotherapy regime failed too.
Options were becoming very limited, and the decision was made for me that a third-line Brentuximab chemotherapy treatment, followed by an allogenic stem cell transplant, was the best way forward.
My care was transferred from the wonderful haematology department at Guy’s to King’s College Hospital and their specialist transplant centre.
After five Brentuximab infusions I finally went into remission, and two 10/10 matches were found for my transplant: one in Germany, one in the States. The American donor was chosen and I was soon admitted to King’s for the process to begin.
I got through the first week of conditioning chemotherapy and the day of the transplant itself came around. I remember feeling totally underwhelmed when a small bag of cells was brought in, and before I knew it, it was done.
My post-transplant treatment
The weeks that followed were tough, full of transfusions, mouth and throat ulcers and more than a few tears and tantrums.
My incredible parents and sister visited daily, bringing obscure food I thought I might be able to swallow, clean clothes and a seemingly bottomless well of positivity.
I was discharged just before Christmas, on the promise that I’d head straight back in at the first sign of anything unusual, and being able to wake up on Christmas morning in my parent’s house was the best present I could have had.
King’s kept me under very close observation and my dad became an unofficial chauffeur, driving me to and from the hospital numerous times a week.
In February I contracted an infection, and was immediately admitted to King’s as an inpatient, where I remained for six weeks while they tried to establish the cause. This, for me, was my darkest time. I refused any visitors other than immediate family because I couldn’t bear for anyone to see me in the state I was in.
It was finally resolved, albeit after the discovery of some other underlying conditions including sarcoidosis, which explained the continuing presence of activity in my PET scans.
My fitness regime
After being discharged, I was like Bambi. In four months I’d lost the three stone I’d put on through all my original treatment and then some.
It took a few weeks before I could walk more than a hundred yards without a rest, but I was determined to get back on track and to some semblance of ‘normal’ life.
I started with walking out for a coffee, then to the shops, then to the park, and before I knew it I was starting to feel strong and – for the first time in as long as I could possibly remember – healthy.
My return to work
My work, who had been incredibly supportive throughout the whole process, agreed that I could come back on a phased return 10 months after the transplant.
I was absolutely terrified walking through the door on my first morning back, particularly given how cloudy my brain felt after two and a half years out of work.
It was immediately obvious that my intended four short days in the office was far too ambitious and a new strategy of two days in the office and two days from home was agreed.
Slowly, over time, I built up to five days a week at full time hours, with two from home, finally getting to five full days in the office one year after I returned to work.
My main struggle on returning to work – and still to this day – is the perception people seem to have that if you look and behave well then you are well, when that’s not always the case. I think a lot of people assumed that coming back meant I was ‘cured’, that it was all over and I was ‘just like them’. If only!
I have really struggled with the dichotomy of wanting people to forget that I was ever ill and for me to be on a level playing field with needing them to understand that I do have some special needs that I didn’t before. A few busy days at work and a hectic weekend can totally wipe me out, and I have had to be careful not to over commit myself and make people around me understand my limitations.
Getting my qualification
I have always loved my job and over time enjoyed taking on more and more responsibility – although the professional qualification I had failed in 2013 was still hanging over my head and preventing any career progression.
It had become my personal Everest – as well as being a notoriously difficult process to begin with the memories of how unwell I had been the first time I’d taken it, and just how badly I had done, were never far from my mind.
In October 2016 I finally faced that demon, and this time things went enormously better; finally, six years after starting my career as a surveyor I could add the letters MRICS to my name.
Since then I have had a further promotion and was nominated to take part in my company’s ‘Women in Leadership’ programme, which allows me to travel to our head office in Paris for training with some incredibly talented women from all across Europe.
Soon I will be caught up to where I would have been if I had no time out at all!
Me, right now
My initial trepidation around travelling outside the UK post-transplant soon dissipated, and my love for travel is back.
A year and half after the transplant I went away with a group of friends to New York to celebrate my 30th birthday; we chartered a boat and went sailing in New York harbour, and raised a champagne toast to the anonymous man who’d saved my life.
For my two year transplant anniversary I went to St Lucia with the boyfriend I’d met in the midst of my recovery.
We’re travelling to Indonesia, Malaysia and Singapore together later this year, and over the next few years we plan on seeing as many corners of the world as we can. I’ve managed to squeeze in city breaks all over Europe and hen dos throughout the UK and as far afield as Ibiza.
I am now over two and a half years post-transplant and life has settled down nicely.
There are a number of things I still struggle with, but these are getting fewer and fewer, and I feel strong, healthy, and happy.
I see a counsellor at King’s who is helping me deal with the issues that have arisen through my recovery, including a significant fear of relapse.
I still get nervous every time I go to a six monthly check up. The waiting room, the blood tests and the conversations around me between other patients are always enough to convince me that despite no symptoms or sign of illness I have relapsed and it’ll all start again.
My counsellor at King’s has made me realise how very normal this is, and is helping me deal with both this and other anxieties I have, right down to simple things like helping me cope with the commute into the City every day! I resisted seeing a counsellor for a long time but just a few sessions with her have helped me enormously. I just wish I’d started doing it sooner.
But with her help, and the incredible, unwavering support I’ve received from my family, friends and colleagues, I feel like the future is very bright.
Chloe is a volunteer committee member of Anthony Nolan’s Big Quiz Bonanza; our newest fundraising event happening on Thursday 21 September 2017 at the Camden Centre, Kings Cross. You can support this event by buying a table or donating a prize.