I wanted to say how we've been coping since finding out last week but it's kind of impossible to sum up really. All over the place I guess. Hearing the news on Wednesday - particularly the grade 4 spine stuff was devastating.
Because it wasn't a proper appointment and the consultant just saw us as a favour almost to the ENT consultant he didn't seem prepared. He spent a lot of time talking about what we felt were irrelevancies - sperm donations, blood transfusions etc. He seemed nervous, he said erm a lot, he didn't reassure us, he didn't explain properly about what the chemo will involve, what the prognosis is, and he didn't point towards any support. Whenever we'd seen the ENT consultant there was always a couple of nurses in the room. The lovely lovely nurse who always saw us and asked us how we were feeling and coping, and another lady whose designated job i'm sure was chief cuddler. The haematologist seemed to be a one man, stressed band.
Anyway so that left us kind of adrift after the appointment. Lost and alone. Thursday was horrible. We were both tearful. Both really really struggling to tell the people we love, hating to dash that hopeful anticipation on the other end of the phone. Friday was better, J pulled himself up, read some leaflets, looked online. Satuirday was great - we had a day out doing something fun - we didn't talk about it all day and J felt really good, there was wine and laughing and normality. Sunday he was still on a high, revelling in having sport to watch and no work to worry about. I slipped a bit. Looked at some hodgkins pictures of instagram, felt so scared of everything he will have to endure in order to make him better. Today I'm at work. He went out on his bike, he was looking forward to it but his back hurt so he came back. I know that will knock him. *sigh*.
So next plan is Thursday for his PET scan and Monday we see the haematologist again. He is supposed to by then have seen the PET scan results and have had a meeting with his colleagues in Newcastle to agree John's treatment plan. I am very sceptical about the timing of this. Tuesday we should be jetting off for 10 days in the Adriatic. We know we are very unlikely to go but we can't bring ourselves to cancel just in case. Thursday John is pencilled in to start chemo. And life as we know it will never be the same...It is impossible to get our heads around it. I particularly don't understand how it could have got to stage 4 without us realising. He really isn't poorly. And the bad back has been going on for nearly 7 months now. So if, as they tell us, it started in the lymph nodes and spread to the back does that mean that he had lymphoma a year ago? last summer? Christmas? It is impossible to believe. I keep looking at old pictures and thinking no! it just can't have been. I can see from maybe March this year but before that, no, I'm not having it. I can see by the way that this isn't something worth dwelling on. But perhaps it's part of the acceptance process. There are a lot of HOWS and WHYS???? right now
