The spring cold came and went, and another cold jumped in its place, this time things were different, Dal had been feeling quite unwell, and he had also started to lose his hair, something that seems to have surprised the oncologist, a rare side effect of this trial treatment we were informed.
Initially the hair was just coming out in small strands, but one evening after his shower I found him standing in front of the mirror with hair in both hands and all over the sink, this was a shocking site, and he was clearly upset, we cut his hair and managed to keep some of the ponytail that he had been growing for the past 3 years since the last hair lost experience, we were going to a party for a friend and didn't want the focus to become about Dal. Two days later, the rest of his hair was removed, there was no saving it and Dal was becoming frustrated by the constant finding of his hair everywhere.
The cold continued and the cough got worse, so much so that I insisted just before Easter that Dal contact the Trial team, thankfully he did and they organised a blood test for the next day, and a collection of antibiotics as a crash pack, then the afternoon after the blood test he received a phone call telling him to start his antibiotics straight away, his C-Reactive Protein blood test had come back with a reading of 21.0 mg/L when it should have been somewhere between 0 - 5 mg/L, so this highlighted an infection or inflammation that quickly needed to be rectified.
This was a rough few weeks for Dal, it is truly the first time since his original diagnosis where he seemed to be falling into a black mood, it is hard to keep positive when experiencing such negative and debilitating reactions, but we didn't know if it was due to the trial treatment or an alternative infection.. Dal's mindset is, as long as he can give himself tasks to achieve, and achieve them, he will be fine, over those few weeks he was lethargic and struggling, and it was difficult to see... but as the antibiotics began to work, Dal pulled himself forwards, he gave himself one or two tasks and achieved them, he slowly began to feel better, thankfully/
His 3rd infusion of the trial drug last week was followed by a weekend where his tasks were set and achieved, he managed really well and we hope that his body is getting used to this new invasion on a 3 weekly basis. It is possible, that as Dal previously had his treatment every fortnight, his body never really had time to recover, with the 3 weeks infusion, he seems to just get to feeling Ok again, and then he is back on the treatment, and we know this is the experience of many people with his type of cancer, but it is new for him.
We can only monitor him for now, and hope for the best, after all, we are very lucky we are coming up to 4 years since original diagnosis, he is now on a trial and this means treatment continues, we will keep everything crossed that it works its magic and Dal stays with us for another 4 years.
Lowe'
