I suppose all good things must come to an end – or at least a pause, in the case of my most recent wonderful time at home. One of the ‘rules’ I have to follow in order to minimise risks is to go straight to A&E when my temperature spikes over 38 degrees, which it did for the first time last night.
There are many reasons why my temperature might rise, including the presence of an infection. Given that my immune system is both new and suppressed, it’s therefore important I rapidly start on antibiotics to help restrict, fight and destroy any bugs with which I might struggle to deal by myself.
Of course, it’s not necessarily the result of an infection needing special attention, but whatever it is needs to be investigated, through all sorts of blood tests, swabs and x-rays.
Thus far, the only infection that has been identified is the loitering Influenza B, despite the symptoms having improved hugely in the last few days.. So it’s masks back on, unfortunately… I’m also starting on an inhaler for a drug similar to Tamiflu.
I moved through A&E relatively quickly, thanks to my ‘immuno-suppressed’ card, but while Mariacristina was waiting, she was most (un)impressed by seeing so many people who’d ended up there through their own fault – usually involving alcohol, by the look and sound of it. She was furious to see precious resources being spent on such cases, when there are shortages across healthcare, including in cancer treatment.
The silver lining of the cloud of being an inpatient again is that I’m in the best place for the doctors to study and treat any other problems I have. Chief among these is a nasty rash that has developed, particularly on my chest, but also on my face, which is also puffier than usual. I haven’t Skyped my siblings for fear of frightening the babies…
First diagnosis was Grade 1 or 2 GvHD (graft vs host disease), which would mean the donor cells seeing my body as alien and attacking it. Mild GvHD, though, is also good in that it shows the new immune system is working and will potentially provide graft vs leukaemia, destroying any effort by the cancer to return.
However, the details of the rash aren’t exactly typical of GvHD, so tomorrow I’ll have a skin biopsy to check whether it is that or a drug reaction. Meanwhile, hopefully the antiobiotics will wind down quickly as my temperature came back down quickly and has stayed there. Luckily this time there was a bed available on the Ruth Myles ward, so I’m pretty comfortable, but I hope to go home again soon.
I’ve even been getting some taste back: a mixed blessing when eating hospital lunch or taking Itraconazole. Sadly it will be too late to make the most of the fab cooking by Lorenzo and Jagoda, who have been a great practical support to us both but head back to Pisa on Thursday and Friday (via Poland) respectively. It was a lot of fun sharing Easter with them!
Day +28 is also, of course St George’s Day, so perhaps I was always destined to be back here today…
Hoping for the best with the gvhd!
Grazie, Georgissimo, and happy feast of your patron saint. Prayers continue. Nick
All the best, mate. AABAWA
Hi George
It’s Anneliese from Anthony Nolan here. I’m sorry to hear you’ve had to go back into hospital. But as you say – you’re in the right place for the doctors to get things sorted and I imagine you’ll be back out again soon. If you ever wanted any info, support or just a chat you can get in touch with us in the Patient Experience team at Anthony Nolan at patientinfo@anthonynolan.org (although it sounds like you’ve already got a great support network with your wife, family and friends!).
I also wanted to say that myself and my colleagues have been really enjoying your blog – it’s so well written, informative and entertaining! I look forward to reading it each day.
All the best
Anneliese
Patient Information Manager @ Anthony Nolan
Well done George. Sorry you’ve had to go back in. Keep fighting. If you did need a gonad shield it would be the big one. ;-). Heading to Oxford for a wedding this weekend. Shame its not in a proper university town but hey-ho. Sending you and MC best wishes. Spuds.
Stay strong.