Louise M
Posted by

It's been a while....

Louise M
Posted by
02 Jun 2016

Looking back over my blog recently I realised the story never finished!
I left it waiting for my transplant, everything finally going in the right direction.

The next year wasn't as plain sailing as we'd hoped. Early 2013 I started on brentuximab to tide me over till a bed was available in Easter for a donor transplant. Unluckily for me a scan before transplant showed an increase in disease, the wonder drug had obviously found my bad boys beyond its realms. A third gland had also appeared, the news of this was devastating. I was sent away for a month to wait for a rescan. The rescan showed only two glands, the third wasn't Hodgkins. Given this news I was booked for Radiotherapy with the hope of a transplant after. Summer was very bumpy, a bout of shingles which paralysed my face a little known condition called Ramsay Hunt, the statistics of this along with my Hodgkins I think probably makes me one of a kind! This is like Bell's palsy but the paralysis affects the throat too. I was also being very sick, it wasn't the best of summers. We got through radiotherapy to be told the transplant could go ahead, we also discovered the sickness was a line infection that had been rumbling along for months! So needed a week in hospital my Hickman, that had lasted over a year,  had to come out and a new one put in, a course of antibiotics was prescribed and I was spending one of my last weeks of freedom on a ward! 

Finally at the beginning of September I went in for my transplant, the consultant couldn't give any reassurances about what a transplant would do to my drooped face but there was a window to give me my transplant which we had to take. I had been waiting so long I didn't care! My brother was all set up to donate and it was all stations ready.