Julie’s Story

Site created on September 24, 2018

Hello.  It gets a bit tedious telling the same story over and over....so we're hopeful this might be a straightforward way for those of you curious about how we're doing to check in, without us spamming people who aren't so interested, which would be a bit mortifying.  so have a look, have a lurk, and feel free to comment or send a bit of feedback.  The short story is this is about J managing to get Myeloma a bit daftly young, the longer story is rambled through in the journal.  J+K

Newest Update

Journal entry by Julie Whitejohn

Do you know, it's only 4 weeks since I've written?  And on the one hand there is very little myeloma news as it is very stable.  Very "quiet" as haematologist #4 calls it.  But otherwise the news is I've hit haematologist #4.  We all ended up going to clinic to see haem #3 as it was teacher only day, and K rearranged her clinic that day to come.  We got flicked to registrar clinic.  I've met a number of haem regs now, and I've only really liked the first one, Dr C (who did my first bone marrow, always remembers I'm a person [really key point] and comes to say hi when I see her).  It's hard to know if I expect too much, as I'm lucky that in my day job the regs I supervise are normally really senior psych regs who are already very good. But....whilst I expect my regs to look beyond the symptoms to the person/their motivators, surely it's not dissimilar for registrars in other specialties?    At the very least, I'd like to be seen as more than a set of blood results.  Which is absolutely the failing of every haem reg I've seen bar haem reg Dr C.  I appreciate they're busy, and they've a clinic to get thru/survive. But suffice to say clinic didn't go well and I ended up grumbling if I was to see someone who couldn't say more about my blood results than I could, I'd much prefer to see GP Dr J who I like, rather than a random.  Dr J remains a benchmark; on the one hand I get she's met all of us, but also, in a 10 minute slot she always seems to treat me as a human.  After a bit of grumbling (and with all the parking challenges etc, 10 minutes of unsatisfactory clinic took about 90 minutes out of my life) I decided to contact one of the haem CNSs I'd met at a management course, as my letter said I might be reassigned from Dr S if they managed to recruit.  She told me that in fact Dr S was literally retiring that fortnight and also it wasn't usual for consultants in other specialities to see the reg (as we're tricky customers).  So she said "who do you want to see?" I was a bit taken aback by this.   She said she'd go and ask whoever I wanted to take over my care.  I knew who I didn't want to see.  But I'd not really been thinking about who I wanted to be my haematologist. I eventually said I'd heard of 2 that come highly recommended.  She summarized my choices as "really nice and bookish" or "really, really nice".  I chose really nice and bookish, so long as he was happy to have me given I've previously worked with his wife.  I figured given he's married to a [very smart] psychiatrist he'll not make the mistake of presuming psychiatrists are dim/the low achievers of the med class....anyway she approached Dr P, and he called me later that day having read and summarised my records.  It was a much better call than the review with reg, and I'm very happy to be under a geeky haematologist :-)  He didn't tell me the myeloma was in complete response but he did say it looked "very quiet" so I'll take that.   Noting I didn't specifically ask him re complete response as I was cooking dinner when he called, and a bit worried it would burn.  I'll ask him what he thinks when I see him next year.  He says he likes to do phone clinics (even pre covid) for well patients - and he was really chatty on the phone, so maybe that will work.  I quite liked in person.  But maybe he can make phone clinic work well.  So if I never met Dr S, does he count as the third haematologist, making Dr P the 4th?

The whole covid vaccine thing is interesting.  Fingers crossed it works out, and it looks like it might allow 2022 to be normalish and 2021 more normal.  I'm not sure what that means for me - it seems a long time to expect to stay well, but it is also possible.  We are certainly hoping the Australian bubble can open next year and we can see L's Dads - and maybe also travel a little in Australia. 

Two weeks ago I went to beervana.  It seems really surreal that NZ could break all the rules by having a large indoor gathering with alcohol amidst a global pandemic. When there was a case in wellington the week prior I think I was hoping it might be cancelled and we could get our money back and not think about it/hope I might be able to go next year.  Alas, it proceeded, and K encouraged me to push on, and it was brilliant.  My two mates, M+C, and I had a lovely time.  I'd been lucky to have the Thursday off prior as well to see friends A and J, so had a 5 day weekend! The weekend after my 4 day weekend of canterbury anniversary.  On friday morning, Wellington put on one of it's best days and we were sitting on the waterfront drinking coffee ahead of the session opening.  A guy came up to us smiling and said we looked the picture of relaxed,  a couple of days off work and family responsibilities eh? K's mum and partner kindly put us up.  The food at beervana was excellent, there were some very good beers (nothing so mind blowing I'd hunt them out but I was impressed by the beers of Abandoned Brewery which I'd not heard of prior) and we had a great weekend away.  We proceeded with the team tshirts K suggested we get, and got a few nudges and winks about the fest when we wore them on Friday - and the guys were much easier to find in green when we got seperated on Friday, than on saturday when, like everyone else, we were in "black beer t shirts". 

After looking at a few shops, K finally found a new collar for ixir,  He actually had the previous one since a medium sized puppy and so it was really needing replacement.  Picture below.  He looks very handsome.

Today is the 15th anniversary of K and I's civil union.  I booked the day off.  We've had a lovely relaxed day.  K was keen to go along to her silversmith's course this morning, I stayed home and pottered walking the dog, drinking coffee, mowing the lawns....I'd planned to watch the start of the first test match of the season but it was too wet to start.  We had a nice lunch out and then I've been watching test match cricket this afternoon.  I did ask K if I should come up with something more romantic for the afternoon, but she says it is good to have different interests, and she was happy doing her pottering.  Alas, we're very lucky we can have the legal recognition/safety of a civil union (not a thing when we got together) and we remain happy together.  We were also relaxed about not doing too much today as we have next weekend to look forward to: K's dad sent us some money to go away for a weekend and said sister in law would kindly mind L.  We've decided to actually stay home and live it up large going out to fancy restaurants here and stuff.  So that's been lovely to look forward to.    I've been enjoying a number of days off "here and there" - beeravana, today, next Friday.  I had leave hoarded for our trip to the UK that didn't happen, and been using a few whilst work has been less busy.   

 The quality street advent calendar has not arrived.  K kindly got L and I a box of cadbury NZ favourites as an advent chocolate box anticipating this.  We lucky dip from the box in the morning.  I was very amused yesterday morning as I'd been on call  overnight and got called in at 6am.  I debated showering in case I didn't have time to get back home but decided to go in with a plan to come back home and shower.  I got held up a bit later than I hoped and so nipped home to shower and grab breakfast before going back to sort some day job things - I imagined I was home for shower and breakfast, but L arrived enthusiastically with the advent box, appearing as if he thought I'd come home specifically for that.  Hopefully the quality street advent will come before christmas.   Fortunately friend A kindly brought us some boxes of our favourite christmas chocolate mints, and so I know I have some of those secured for christmas, so need not stress that they we'll be lacking.  

By the mention of on call you may have garnered I've done the odd one.  I had my every second year performance review/coaching/discussion the other week.  I'd gotten a bit wound up in advance as I wasn't sure who was going to do it, and also I found writing professional goals for the next two years a bit confronting beyond "staying alive" and ideally "staying upright and able to work" which is a bit different to my previous grand plans for improvement.  I realised some of my anxiety was that they might say something awkward or upsetting, and once someone had helped me realise that, I sent an email with an agenda and things I thought we should talk about.  Which they'd read, and thought about, and said was really helpful.  So actually it went really well.  The best news was they said they would consider job splitting my role to less than 0.7 if/when I felt too tired to keep doing 0.7 (wheras before I got sick I was told clearly it was all or nothing) which is especially good as when I relapse I can't imagine trying to stagger through more intense treatment again at 0.7, and so I imagined I might need to find a new job on top of more treatment - this means I can stop worrying about that.  And we've agreed I'll do two mondays on call in a three month period, and offer to do a friday public holiday if one comes up in the 3 month rosters - but there isn't any pressure for me to get properly back on the roster and do a weekend day.  They were also quite nice about my general skillset.  And they did agree that if I was in fact still well in 2022 it was fine to apply to do a sabbatical which I've got a few ideas for.  

Outside of work, my kombucha is going well.  The mushroom farm briefly sparked to life outside,  I excitedly announced I could bring it back in.  K pointed out it now houses "a lot of wildlife" and would not be coming back inside.  Although I thought it had been a bit damp outside, it turned out not damp enough for mushrooms as when I visited it yesterday, my mushroom had dried to a crisp.  Still no sign I'll be supporting the family with mushroom growing if  I can't keep up the psychiatry!

And finally - a couple of things improving couch life - the cricket is back!  And my long awaited whisky from springbank (and their longrow variant) have arrived in.  A particular joy last weekend was we'd hosted my work team christmas do on saturday and there was cricket and leftover pavlova to enjoy on Sunday.  It would've been better if it was a test match than a Twenty20 but we can't have everything! 

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