Roz has been asking me to write this post for quite a long time, but I’ve refrained because I’ve never really known what to say.
I think back to when it all really started. Roz was having pain in her shoulder when she had even the slightest amount of alcohol. Despite my protestations, she’s a bugger for researching things for herself on t’internet. When she inevitably did and found lots of references to Hodgkin’s Lymphoma I took it seriously, but at the same time didn’t really believe it. I just told her to go and see the doctors, deciding our lack of medical training meant we weren’t really qualified to make a sound diagnosis. “If you’re worried, see the experts about it.” I said, and left it at that.
That was my first mistake.
Some time later (Roz will remember the exact time that passed; I never can) she did visit the doctor. This particular GP hadn’t heard of the alcohol-related pain as a symptom of Hodgkin’s before, and promised to look into it for us.
We never heard from her about it again.
Some more time passed, Roz was still concerned so went back to the doctors and saw a different GP. He sent Roz for some blood tests, but when they came back normal (apart from a slightly high white count that could’ve been attributed to Roz’s recent pregnancy) he simply suggested that nothing was wrong, and that Roz should just avoid alcohol. “It’s probably nothing, maybe you’ve got an achy shoulder because now you’re carrying the baby around and alchohol relaxes it.”
So we took his word for it. That was the second mistake.
Some more time passed, and Roz tried alcohol again – finding that the pain was still there. Once more concerned, we returned to the doctors and saw a third GP. This one had heard of the alcohol-related pain as a symptom of Hodgkin’s, and ordered Roz to the hospital for x-rays.
Then various things happened that actually led to Roz’s diagnosis. You probably know from reading this very blog. I did get very upset when we were told, but managed to hold it together pretty well I think. My frame of mind then and since has been “Right, so what do we do to fix it, then?”.
My way of coping has been twofold: don’t think about it, and think positive when you have to. I quickly assimilated Roz’s illness as “normal”. I changed the actual definition of what “normal” meant. This meant that I didn’t sit depressed and distracted, mulling over it in my head and unable to concentrate on other things like my work. I’ve tried quite deliberately to anchor us and not let it take over any more than it had to. I may have changed more nappies (I work from home), but on her good days Roz still did washing and cooked and looked after Jake. She’s been a star for that, she really has. On her treatment days and bad days friends and family went above and beyond so that I could carry on at work.
All in all, I don’t think I’ve perhaps, on the face of it, done that much out of the ordinary. I’ve considered Roz’s illness something that’s an inconvenience for us, which should be fixed and put behind us as soon as possible. I’ve not cried about it, because while it’s upsetting to think how things could have worked out, I decided that was definitely not going to happen, so why get upset?
Roz has occasionally thought me not sympathetic enough. It’s true that I’ve not pandered to her too much – whimpers of “I’m not well” have been met with a simple “Ask your doctor about it”, although these days we don’t take “it’s probably nothing” for an answer. I don’t wrap her up in cotton wool, because then her illness is having an even greater impact than it deserves, but then when early one morning when she told me her temperature was over 38, I rolled out of bed and we got Jake and ourselves together to go to the hospital.
It’s been a crappy year for Roz, so my reasoning boils down to this: the more normal life at home could be, the better. This might sound harsh, over-rational and maybe a bit selfish, but everyone has their way of coping. I like to think my “keep it real” attitude acts like a damper to Roz’s emotions, preventing her swinging too far one way or the other. I hope that while it doesn’t always feel or look like it, I’ve helped.
I felt a great sense of relief when Roz completed her last trip for chemo. It’s not been easy for her (though she has been very lucky with her reaction to the treatment) so the fact she doesn’t have to go for it again needs to become normal, just as “chemo Friday” had to become “normal” once upon a time.
Tomorrow Roz has her final PET scan, and results come back in a week, and we have a nice holiday abroad booked for after that. I have all the usual extremities crossed for a great result from the scan. We’re not out of the woods just yet, but I hope if we just keep going the way we’re have been, we’ll all be just fine.
'kin Hodgkin's 