a very important date

I type this on a rather q***t (DON'T SAY THE Q WORD!) twilight shift on ECU - unheard of, especially right before the Easter weekend....let's hope it continues for the rest of the Bank Holiday; while most of us get on with eating our chocolate eggs, other less fortunate lackeys of the NHS will have to spend the weekend battling the rising tide of patients. (Actually so will I on Easter Monday, after inhaling my egg. Good way to burn off the calories at least.)

So I have been given a date for my cochlear implant surgery - Tuesday 5th May! EEEEEEEEEEEEK! I'm not quite sure how I feel about this yet - I try not to focus too much on the actual surgery itself (though I bloody well hope my surgeon does) as it's a small hurdle on the way to better hearing. I'm fortunate as well in that one of my friends is also going through the process - she has had her bilateral implants already, a couple of weeks ago. It's oddly comforting to think that I have a companion in all this, a couple of steps ahead of me. I'm really looking forward to meeting up with her and seeing how she is getting on. Her switch on will be a good month or so before mine, so it will be handy to have a first hand account of what it's like for someone with similar hearing to me. 
UPDATE: I should point out I am only having one implant - currently to get 2 on the NHS you have to be a child or visually impaired as well. 

I'm not sure how I am going to deal with all this psychologically. We went skiing in Tignes last week - my first proper winter holiday - and I made the mistake of not booking lessons in advance, so I had to spend the first day wildly out of my comfort zone, on terrifying chairlifts and falling painfully down dozens of vertiginous blue runs. By the end of the day my stoicism had run out, and after skidding down Melezes for the gazillionth time I became rather pathetically whimpery. David had to carry my skis and let me hobble down to the nearest village, where we stumped up for a very expensive taxi to take us the tiny remaining distance to our chalet. I became a small miserable black hole of negativity for a couple of hours, moaning on about how I wanted to get the flight home tomorrow and I couldn't possibly do this and I was doomed to break some bone or other if I continued. (I'm not sure how David put up with this without strangling me but to his credit he did very well.)

I then had a shower, nap, 3 course meal and lots of wine. All this and a good round of Bananagrams restored my equanimity. The next day after 1 private lesson I was all smiles and "I CAN DO THIS" "I WILL OWN YOU MOUNTAIN". The rest of the week went by in a blur of not-falling-over and making it down several blue runs that had seemed impossible at the beginning. Now I can't wait to go back!!

The point of all that waffle - apart from making you jealous of my snowy holiday- is to explain one of my character faults: I can get really negative about things really quickly, often with a common-sense failure at the same time. However I normally manage to get back on an even keel after some food. Moral of the story - take biscuits to switch-on. And remember that things are always better after a good sleep! I like to think of myself as a fairly optimistic person on the whole, with occasional flip outs normally remedied by a hug or food. Or flowers. So hopefully I will be fine when switch on happens and I have all these weird new noises to get used to.

In other news, I have picked my implant model - I went for Cochlear, ultimately because I liked the look of it better (it's smaller) and the gimmick of automatic noise control (where the implant switches programmes for you automatically) sounds pretty canny man. I also got to pick the extras - so I went for waterproof casing so I can go swim underwater (OMFGIZZLE) and 2 spare batteries.

Here are some pictures of me trying the implant processors on. Excuse my massive pointy chin. 

Cochlear Nucleus (black - obv I will get a neutral looking one)

the vast array of colours available with Cochlear

Advanced Bionics - veritable rainbow of colours. To be honest, having a brightly coloured hearing aid has never really appealed to me - boring I know - so this didn't really factor in my decision

Advanced Bionics (in white) - I felt this was a bit too large

I have also had to go to a fairly pointless occupational health meeting (from my point of view anyway) where we established that I was indeed to have a cochlear implant and yes I would require time off work, but we don't know exactly how much yet. I wait with bated breath to see what happens next.

Next appointment on the cards is a consent appointment with the surgeon next week, and also an appointment at the GPs to get my pneumococcal vaccine (for meningitis prevention, as there is a small but significant increased risk of meningitis after surgery so near your brain.)

Driving home for Easter now (or rather, supervising David) so I will sign off and cuddle Rhubarb! 

Cochlear implant wafflings

Well hello! I've not blogged for ages - been busy with new house, new dog, married life and all that. However as I tend to blog about major life events (cancer, elective in NZ) I felt it made sense to write about my new up'n'coming journey! Also I have a week off and all I've done is eat my bodyweight in this pear and cinnamon cake with vanilla fudge sauce so this is my last chance to do something productive before being dragged back to medical admissions. 

You may know that back in October I went off to the Freeman to ask them to assess me for a cochlear implant referral; they duly did and referred me down to James Cook (the regional centre). The first assessment entailed a long chat with an audiologist, mainly about my expectations of implant, and whether I met the criteria.

The current NICE guidance for CI in adults is pretty stringent. You have to be a) super deaf (more than 90dB) and b) not deriving enough benefit from hearing aids. The way they quantify this is by assessing how you do on BKB sentence testing. This basically means sitting in front of a speaker which says sentences to you (like "the man is standing under the tree" or "the children like strawberries"), and you repeat back everything you hear, even if it's not the full sentence. 

If you get more than 50% on this testing you are deemed to be using your hearing aids to good effect, and are not suitable for an implant. 

I got 41% this time!

(Back in Nottingham when I was 19 I got 51%. Haha. I'm not sure why this is - maybe the ensuing years of medicine have dulled my brain, or maybe the chemo made my hearing worse??) Audiograms below for any audiology boffins. 

6.11.2006

14.10.14

I have since been to see my key worker, who is a very nice speech therapist. Her job is to assess me and check that I don't have wildly inaccurate expectations of what CI will achieve, and to help me choose which model I would like implanted (if I go ahead). 

I have also seen the surgeon, who is happy that I am medically fit for surgery (despite my rather exciting PMH). Oh and I have had a balance test too! 

After this barrage of appointments and travelling to and from Middlesbrough (massive thanks go to the lovely Mr & Mrs Wood for having us to stay) - the team had their MDT and decided that I was "likely to benefit from a cochlear implant"!! hurrah! 

I thought I should spend a while writing down why I want to have an implant and what I hope it will achieve (have become a bloody annoying reflective type after only 6 months of GP training, ugh). Then I can smugly look back on it all in a year's time!

Why I want a CI:

1. CYBORG!!!! (this is mainly David; he is very excited at the prospect of having a cyborg wife.)

2. I would like to be less tired at the end of a long day of lipreading people. I don't think people who aren't deaf can really know what it feels like to be completely drained and exhaustified after a day of staring at other people's faces and working that extra 50% to work out what they are saying. If I just have to work 25% less that would be so much less draining. 

3. I would like to stop worrying about what it will be like to have kids; this one used to really stress me out but most of my deaf friends have pointed out that kids are very adaptable and very patient with deaf parents, plus if mine don't speak clearly I will just drown them. JOKES. 

4. I would also really really like to be able to have a conversation with someone without having to lipread them! This may be a far off dream currently but if I am given some high frequencies back then I may POSSIBLY be able to:

• call home! 

• listen to a Harry Potter audiobook without having to read the book at the same time - which rather defeats the point of the audiobook

• have a conversation with David whilst chopping an onion without removing bits of my fingers 

• be able to have people round without worrying that I can't lipread so-and-so, and making sure David knows to talk to them so I don't get trapped in a really awkward situation where am attempting to be gracious hostess but have not a clue what my guest is saying (this is a rare one since I have selected most of my friends to be easily lipreadable, but sometimes the rogue mumbler appears). 

I've waffled enough now and the dog wants to sit on my lap. Next appointments coming up - consent appt with surgeon, pre-op assessments, and a device preference appointment with my key worker. Watch this space!

3 cocktails + chemo = possible bad idea

Mmm have arisen deliciously late on this fine Sunday morning - almost feel back in the student loop again! Having a great weekend so far, and is lovely to return to the bosom of the flat and see everyone. I came back up to Newcastle on Thursday night ready for bloods on Friday morning, which were pretty low: monocytes of 0.2 or something. SO I have a fresh supply of tasty G injections....am getting pretty good at injecting myself now! I have 3, so the last one is today at 12.30. I had a bit of backache and femur-ache last night, and got a little tired, but that was pretty much it. Definitely not as bad as I was expecting from the first time.

Side effect profile so far (for other chemo-gobblers and those interested):
1) Hair - still there (in its present incarnation, i.e. pink short fluffy).
2) Tired - nope
3) Constipation etc etc - nope
Basically am back to normal, as usual just before the next chemo. I don't know how most people are affected by ABVD but I honestly am not finding it that bad. OK, I feel slightly crap and almost hungover for the first few days after, but by a week after am practically back to 100%, though maybe with slightly less hair. People keep telling me I look very well and seem faintly surprised that I'm not a bald vomiting sleepy wreck with skin hanging off my bones. I too am surprised - was fully expecting that by now! I think there is a psychological component to a lot of chemo: if you expect to feel dreadful then you will, and if you trust whole-heartedly in Ondansetron you will be FIIIINE. Perhaps a bit simplistic but it seems to work for me!

After Monday I shall have a real go at trying to describe how chemo makes you feel; as Jenny Goellnitz says, "It’s very difficult to describe exactly how you feel on chemo. I’m a lawyer, so I write descriptions and explanations of things for a living, and even I have trouble articulating what chemo was like. It was sort of like a cross between having a stomach flu and just being completely out of it, like you didn’t even really care you were alive."

OK I don't agree with the last part (I certainly care about being alive) but it is darn hard to explain. And "feeling bleh" probably is the best way to describe it so far. Really, all this waffling about it makes it sound worse than it is. The hardest part is getting over how the word "CANCERRRRRRRRR" sounds, and the word "CHEMO" - they strike fear into the hardest heart don't they?!?

Back to this weekend; have had the usual good FOOD including:
ratatouille with Jenny, Janet's chili con carne, butterscotch apple pudding (think I need to work on this one but it tasted OK), a full English breakfast at Jesmond Dene House for Shal's birthday, Dave's yummy Moroccan lasagne and oh dear lord his TONKA BEAN CHOCOLATE POTS. I still have no idea what a Tonka bean looks like but the recipe is below. Seriously easy and seriously good.

350ml double cream
100g good dark chocolate
1 tbsp sugar
5 tonka beans (a vanilla pod would probably work just as well, but you can apparently get tonka beans from www.thespicespecialist.com)
dried orange zest (think this is more potent than fresh but by all means try fresh if you're lazy like me).
a cinnamon stick

1) Heat the cream with the spices and sugar. Bring to the boil and then turn right down to tiny simmer.
2) Break the choc into chunks and put in a heatproof bowl over the cream until melted.
3) Strain the cream through the sieve into the melted chocolate, stirring until smooth.
4) Pour chocolatey cream into 3 or 4 espresso cups/tiny wee bowls/mugs if you are a student....you don't need much because it is RICH. *dribbles*
5) Refrigerate for 2 hours to set
6) Allow to come to room temp before serving for max flavour.
7) Eat and weep.

No pictures! Damn my camera for dying!! Just imagine it instead - then make it :D

I have a confession: despite being supposedly teetotal I had 2 glasses of champagne at Shal's breakfast, and 3 cocktails at Erin's birthday....oops. To be honest there is no reason why I shouldn't, and have had no ill-effects, except I feel very guilty towards my poor liver which is probably working overtime..... Though I suppose by now it will have processed all the last chemo and is actually looking for something to do. Anyway, thus socially lubricated I managed to catch up with lots of people and it was great fun bouncing between Mr Lynch's and As You Like It.

The new hearing aids (Phonak Naida V UltraPower) are taking some getting used to - because I can hear higher frequencies I've never heard before, EVERYONE SOUNDS LIKE A SHREW. And background noise - in places like Lynch's last night - becomes this intrusive wall of sound with high pitches screeching across the top like barbed wire. Grrrr. I was mainly relying on lipreading for the whole night. I shall persevere and post back after a week. I have a review meeting about them in a month, thank goodness.

Next chemo is tomorrow - Novocastrians, if you fancy popping in for some cancer banter give me a text/facebook message. Ciao for now and enjoy this mammoth post!! I should probably get dressed....or lie in bed reading The Story of San Michele by Axel Munthe, which was a gift from Gaita as part of her cunning plan to make me go and live in Italy (little does she know that that was my main goal in life anyway).

(token photo - view from Gaita's bedroom window)

P.S. Oh CRAP I forgot to take the Neupogen out of the fridge...oops....oh will just have to have it a bit later. My fault for getting so engrossed in blogging...