Days +17 to +19: On parole

When I reached a point in my leukaemia treatment the first time around where I was able to get out and about and look to start working again, going back to my old job at Literary Review wasn’t going to work out very well, not least because my replacement was doing fabulously and resources at the magazine were limited. In addition, despite my having loved the job, it felt like a suitable moment to make a fresh start.

I applied for various sub-editing jobs I thought could be within my reach, given my academic record and time at Literary Review, but the absolute lack of responses soon made me painfully aware that not only was I seriously lacking in experience, but also carrying the weight of over a year of being out of work. Although it is illegal to discriminate against a candidate because of previous (or ongoing) health issues, it was difficult to see how any publishers would choose someone who had acquired four months of experience, followed by 14 months not working, ahead of someone with 18 months in a job under their belt.

It was clear that the ‘gap’ in my CV was going to be a stumbling-block, so I tried to come up with creative ways to justify it in my cover letter – and sometimes even within the CV itself. I think I usually went for something along the lines of: “Having spent over a year undergoing treatment for a serious illness, I have come out the other side more determined than ever to succeed at xxxx.” Nobody bought it, and in the end I came to the conclusion that a Masters in Journalism would be a suitable next move instead, providing me with the skills, knowledge and qualification to serve as a stepping-stone to a permanent job.

During my job hunt I had found that official guidance for patients at my stage of life, who (thought they) had finished studying but not yet made any real ground in a career, was lacking. So I asked a few more experienced workers what advice they had to give myself the best possible chance of not having my CV thrown straight in the wastepaper basket. I was surprised, but also amused, when a colleague of my father’s said that a lot of companies, on seeing that a period of time is ‘blank’, will assume you were in prison. Admittedly I may still have been bald and looked a bit like a thug, but in truth I hadn’t managed to develop a criminal record during my treatment.

I’m therefore ignorant of what it is like to live on criminal parole, but my current status feels as though it probably shares a few defining points.

I’ve served my time in hospital and am now theoretically ‘free’, but living under considerable restrictions. Although I’m not under house arrest, as I can go out, there are places I am not allowed to visit: crowded places such as cinemas, restaurants and public transport. I shouldn’t travel abroad, and need to make sure I’m within a sensible distance of a hospital (preferably my original institution) if I go anywhere away from home. I would feel obliged to check with my ‘minders’ before undertaking such a journey.

I have to present myself to the authorities regularly (twice a week), when they check my body has done nothing untoward between visits, and need to behave myself, in terms of diet and more general infection control, if I do not wish to be incarcerated again. It’s possible that I might get away with breaking any of these terms of my parole, but there’s also a serious risk that doing so would land me back in the jug agane [to plagiarise Nigel Molesworth]. In my case, though, I also need my body to comply: any strange behaviour is liable to land me with further doses of rehabilitation.

Enough of the metaphor. It’s fabulous to have had the transplant, engrafted swiftly and come home. However, this is just the start of the next chapter, which brings its own considerable challenges. The next year or so will be critical as I seek to recover slowly with my developing ‘baby’ immune system and the threat of various complications, many of which come from the fact that my new donor-stem-cell-made bone marrow will not necessarily always be friendly to the alien environment in which it finds itself.

Hence all the restrictions: although my neutrophils, haemoglobin and platelets are recovering pretty well so far, my lymphocytes will take a lot longer – and they’re the cells that combat viral and fungal infections. Unfortunately the flu is still hanging around, probably because I have so few lymphocytes to fight it, but the doctors have put me back on the Tamiflu, in case it does make a difference in spite of its recent negative press. I’m also on the lookout for signs of GVHD (graft-vs-host disease), which would mean the new cells are attacking my body – although the silver lining would be that that would also mean it is likely there is some graft-vs-leukaemia, as my new immune system attacks any lingering hint of the disease.

I’ve not just lost my hair, either; my appetite has almost vanished, although Mariacristina and I have been managing to make sure I eat a relatively decent amount three times a day. It’s painful not to be able to make the most of her wonderful cooking… Although my blocked nose means I’m not able to taste much, I know from experience how good it is, and always wish I felt up to eating more. Unsurprisingly, I’ve also been getting more weary during the day; sleeping badly as a result of the flu doesn’t help with that.

Generally, though, I feel good – and amazed that just 16 days after my transplant I am able to enjoy life at home again. It’s incredible to think about the process I’ve been through and the myriad factors that have made it possible.

As each day rolls by, my next milestone of Day +30 gets closer, and I feel ever more grateful for the continuing magnificent support with which we have been blessed. Thank you.

PS Although we’re able to pick up cards from the ward when I go in for my twice-weekly check-ups, it’s probably best not to send them there any more – if you feel the urge, our SW16 address would be best.