Off we went to the Royal on Friday for our appointment. We saw Professor White Coat again (we saw someone else again too*), and are both really disappointed that he is retiring shortly for several reasons – he thinks it’s good I want to know as much as possible about my disease and, to quote B, has a sense of humour. Our last consultant (LC) kind of took the view that I should basically just take the tablets and stop mithering him. B wasn’t too enamoured with him from the day he gave us the diagnosis
LC: ‘You’re the second youngest woman I’ve come across. The youngest was 36.’
B: ‘How’s she doing?’
LC: ‘She’s no longer with us.’ (But not in a ‘she’s moved consultants’ kind of way.) ‘Just bear in mind if you ask me any questions I have to tell you the truth.’
My blood results were all good except for a blimp on the neutrophil count down to 1.4 from 2.0 last time but is nothing to worry about but we need to go back in a month. B asked what caused this, could overdoing it be the reason – I swear if I do any less I’ll grow roots. Prof WC said not, it could be due to two things a virus or the Septrin. I had noticed about Wednesday a few teeny, tiny blister like spots in the same spot where the shingles appeared last year I popped some Zoriax on and of course was taking the Aciclovir so Prof WC says if it was shingles this would have kept it in check. The other thing it could be is the Septrin which can have an effect on blood counts. We’ve reached the end of the three months of this so we’ll see how this works out in a month.
I take Bonefos at the moment (2 x 800mg) daily, but had read about the anti-myeloma effects of Zometa monthly infusions. Prof WC said he had had Zometa and it had ruined his teeth, plus there’s the convenience factor, so basically it was swings and roundabouts – I can decide next time if I want to change.
Maintenance therapy was also discussed. Prof WC mentioned the interferon study and I mentioned the Thalidomide one, both having the same outcome of increased disease free period but no increase in overall survival rate, he said he would discuss this at the team meeting after clinic. Since I have the luxury of a non-existent PP level I think I’d like to take as few tablets as necessary for as long as possible. (I also finished taking yesterday the Sertraline, I’d been prescribed this for the horrendous OCD that the steriods had triggered, after weeks of gradually reducing the dose – Yay!!!!!!)
I brought up, not literally, various supplements ie, curcumin, glucosamine, and Prof WC whilst not a great believer in the medicinal benefits has no objection to me taking them. ‘They may not do you any good but they won’t do you any harm.’ (I have a sneaky feeling someone in Florence may need a little lavender or Bach’s Resuce Remedy right about now.)
I got a sick note for a further three weeks and then a phased return to work using the holidays I didn’t take last year. So we’re venturing off to Scotland from 11 August, Moffat, Moffat, Pitlochry, Aviemore x 7, Pitlochry. I WILL be driving at some point, although I have agreed with B that it won’t be on any motorways, not that I don’t think I’m capable but I couldn’t cope with B twitching in the passenger seat and possibly throwing himself out of the car onto the ground when we arrived at a service station – people might stare!
B was enquiring last night as to what sort of things we’d be doing on holiday – would it be a ‘taking it easy’ holiday. Hell no, I thought we’d tackle a bit of rock climbing and bag a few Munros. Sometimes you’ve got to wonder!
B also enquired as to which suitcases we were taking and were they in the loft – yes, they are and don’t even contemplate taking anything else out of the loft at the moment and adding it to the chaos!
After giving us the sick note Prof WC asked if there was anything else…
Me: ‘Could you also write me a note for my husband saying that it’s beneficial to my general wellbeing if I don’t have any contact with his mother?’
Prof WC: ‘Do you really want one?’
* We saw Sean again too, the same Sean who exposed my missing house key situation** to B. Sean’s going in for his SCT shortly and I think he should also take the medication free route as it’s obviously affecting his mind as he was very complimentary about us on his latest post!
** Sandy – St Anthony’s list must be huge as these have still not turned up – the retired yoga-ing vicar has suggested St Jude – the patron saint of lost causes instead)