Yesterday, C had a half-day at work, and in the meantime, I travelled from Royston via London Kings Cross, Victoria, Euston (met Malc McD for lunch!), Vauxhall, Kingston, West Croydon, Redhill, where C picked me up, and we’ve driven to Hickstead, staying the night in the Travelodge. Not too special, but it’s the nearest we could find near the hospital in Haywards Heath.
In 45 minutes I can have nothing to eat until after this afternoon’s op, which is why I’m up now, eating.
Thoughts right now are partially taken away by hearing the sad news of the passing of labrat78 (our thoughts are with her friends who reported this), but also my mind is stuck on thinking about this surgical follow-up. It’s been close to one year, end to end. It was after our previous doc sat on the case for a while that we found the services of another in the same practice. I’ve been to hospitals in Cambridge, Saffron Walden, Brighton and a telephone consultation with Lewes, and now, Haywards Heath.
It may seem like a lot of work for a simple little cyst. Now it’s starting to get less solid, but it has also stopped growing. I’m hoping that is a good sign, not a bad one.
Normal blogging service will resume another day. In the meantime, I have to go in at 1130, and I am down as an afternoon appointment. It’s general anaesthetic, and I’m down to have this done, then back out to recover. All going well, they will ensure I am good to go, before C drives me back to the hotel. If I need to stay overnight, well, I shall pack an overnight bag/change of clothes, just in case.
Yes, I hope this goes smoothly, and that nothing like it reoccurs again.
Tomorrow’s looking good for a day out… see how we feel.
Today’s progress – not a lot. A callback was made to me while I was out at work this morning, and now it would appear that they want to find somewhere that has an intensive care unit for me, just in case anything goes wrong! (I’m not making this up – unless there is another medical term called ICU, in which case, please say something to me now!)
Now, I know what you are thinking, right – but didn’t you manage nine days in a hospital two years ago, in a hospital without an ICU, including a general anaesthetic? Yes!
So, that may be so. The hospital that had planned for me to go in next Wednesday (Princes Victoria Hospital, Lewes) did not have an intensive care unit, or overnight facilities. However, when I went for my appointment to see the surgeon at Brighton in the summer, he said that this would be a minor procedure, in overnight, and this would be at the Princes Royal Hospital in Haywards Heath (which, as far as I know, does have ICU and overnight facilities). The question in my mind now is, why the hell was I given an appointment for the other one? Or was none of this remembered?
On slightly more positive news – I have now successfully managed to phase off the Citalopram, and the Amitriptyline, taking down my daily pills by another three. Earlier in the year it was twelve in a day (four HRT) now it’s six. We didn’t feel like excessive celebrating last night (one year since the night when I proposed to Caroline) but we did go out for dinner. Road was closed on the way home, so ended up doing some back-road navigation to get us back to the A507, and then ultimately, the A10.
So, today, I call the person who was doing the admission, and we discuss this. He explains that the person who was meant to be doing my phone call (pre-op assessment) last night did not, and she left it to someone else. He promised to discuss it with the ward sister, and call me back by early afternoon. Half four, and I called him to be told that they aren’t going to have me – because of “Acute asthma and BMI” – acute asthma is a bit of a misnomer, as I’ve only had two shortages of breath in my adult life…
… Now, truly back to the beginning. 11 months of fighting and hassle, all for nothing. Back to where I began, with a common thread running through this. I’m not wanted wherever I end up.
... I kid you not!....
... anyway, should be out and back home THE SAME EVENING. Sounds good to me!
After the end of this week, and the weekend, I've got a clear week, intentionally.
If all goes well, it is going to be good. Otherwise... (I am trying not to be cynical, and just hope that the sudden rush is a good thing!)
(Did that make sense?)
Mind you, alongside this, further chasing has been done re my follow-up surgery appointment. It’s getting on for ten months now, or is it just me? Anyway, turns out that the PA’s involved had not actually had the letter for approving funding. Well, they’d told us that they had – or, was that only to try and ensure they didn’t lose me to the “other” hospital involved in all of this? I’d appreciate it if they could either do heads/tails or stone/paper/scissors or something to decide who’s turn it is, and get this thing over with!
Tuesday 23rd June – My Day In The Cities
This was a hot day, enjoyable, but also my first out alone (except for work) for some time. Caroline dropped me at Melbourn at my request, and I went for a bash on a Stagecoach DayRiderPlus on a day trip around Cambridgeshire and Peterborough, with some shades of similarity to my previous Peterborough trip – and yes, Broadway was closed this time too!
16023 26 Melbourn opp Car Park to Cambridge Bus Stn Met several ABF members!
21225 45 Cambridge Bus Stn – Huntingdon Bus Station
Took this one (in preference to the faster 55) so I had the option of getting off at RAF Wyton, but didn’t see the 30 anywhere, sp stayed on to the bus station for pics. This was my first passenger trip on one of the new high specification buses currently on the 15/45/55, with leather seats, WiFi, power points, and air conditioning – which all worked well on the hot day!
16130 46 Huntingdon Bus Stn – Peterborough Rivergate
Walked via pedestrian area, bought a few things and picked up stuff for the forthcoming ABF trip. I’d stopped into WH Smith, and had a look at their clearance stuff. I was reviewing whether or not to stick with my Moleskine diary that I’ve used for the last year or so (it was an 18 month one) and went for a reduced £5.99 fabric Filofax Mistral, Personal Size (the original 6 holes) in a white, turquoise, green, pink pattern. I had the Pocket and Mini before this, for as long as I can recall, back to when I first went south to London in 1999 and intermittently before this.
33696 citi5 Midgate House – Peterborough Bus Station
20849 32 Peterborough Bus Stn – Chatteris, opp police stn
16588 X9 Chatteris opp Police Stn – Cambridge Drummer St
16026 26 Cambridge Bus stn – Royston Queens Road.
See all the pictures here!
Wednesday 24th June – home for deliveries
A variety of stuff came and went, including our first delivery of food from Riverford Home Delivery from Riverford’s Sacrewell Farm, near Peterborough. Following rave reviews from shullie and others locally, we decided to giver it a try – a mix of this, less supermarket stuff, to be combined with other changes that we’ll talk more about later.
Thursday 25th June – Evening at work
An evening out for a work meeting, and I spotted traffic backed up all the way along the other carriageway of the A14. As it transpires, the traffic was stuck following a hit & run, where the driver drover the wrong way up the A14…
Friday 26th June – More of the same
Train to Cambridge, and I managed to get one of the ‘new’ green/blue 321 trains now at First Capital Connect. Afternoon at work – and another smash on the A14! (heard the latter on the bus on the way home!) Even the former MP for Huntingdon is also adding weight to the campaign…
... anyway, you can see all the pics I took here.
Sunday 28th June – Out & About
We went into Cambridge, had lunch in Pizza Express Jesus Lane, but I was rather worried about C’s tummy. In any case, C wanted pics of the poppies growing around Foxton, so I grabbed a few.
Monday 29th June – Royston to West London [Charing X GIC] without a train
Well, my appointment at the Charing Cross GIC (Fulham Palace Road/Greyhound Road) and the first day of new GreenLine Service 712 saw a dual need. After talking to Caroline about travelling south, I explained we’d probably have to pay peak fares to go back on a busy FCC train back to Royston in the evening crush hour… but there was only £2 in it to go via St Albans. So, started with Charter Travel’s 127 service to take us to Royston Bus Station on Mercedes P490 TGA, then Arriva The Shires Optare Versa 3403 on the 331 to Ware/Hertford, changing at Ware College to Arriva GreenLine Citaro 3403 on the 724 to St Albans Peahen, walked around to St Albans St Peters Street, a bite to eat at Weatherspoon’s (The Watermead Barn) before talking Arriva GreenLine coach 3906 on the Service 712 to London Victoria. Off-peak returns were going to be £2 cheaper each than returns, evening though we could not come back this way. While waiting for a Travel London 211 (two previous ones were turned short at Chelsea, Worlds End), Caroline’s bottle of sparkling water managed to overflow onto her and the person beside in the shelter! Eventually, Trident 9786 of the newly sold Travel London took us to Fulham Palace Road/Greyhound Road. Appointment was a little late, but no biggie, we had time. I was seen by Dr James Bellringer, but as it turned out, there was not a lot to do (see Brighton post the previous week or before). So, why go all this way? Well they did give me an appointment quickly, so I wanted to make the best of it. We discussed them taking over our trans care (in my case from Scotland, and in Caroline’s case, the private sector, following our findings from the PCT etc.) Quickly out again, drinks from Sainsbury’s below, then similar 9790 back to Victoria mainline station. We stopped for KrispyKreme’s before walking out via the first weekday of the C2 extension to Victoria [in favour of the 8/N8], before walking onto Victoria/Grovesnor Gardens to get Richmond’s newish VDL coach 593 FGF on commuter service 796 back to Royston Tesco. We had air conditioned comfort, and plenty of space to stretch out. It was a busy day, and you can see the pictures here.
In Other News…
Remember I mentioned the new pills? Well, I do feel they are starting to work, but I did find out the hard way that I can’t have alcohol with them – one glass of rose and I was feeling rather woozy!
I am a little behind on the OU stuff (plus many other things in life) so I am trying my best to catch up!
The next posts will cover our weekend manoeuvres.
Then, straight onto the A14, M11 (where I did this post on the road, using the new o2 USB Modem stick), M25, A282 Dartford Crossing, before stopping at Bluewater Shopping Centre. Can’t believe that it’s ten years old this year! As you will see from these two pictures, Bluewater is in a very scenic part of the Kent Thameside!
After stopping for drinks, we continued – although I was a little lost (usually in and out of the bus stance – sorry, Bluewater Transit Centre they call it there - not the car park) so in panic, inadvertently had us turn the other way. We managed to get back on the last turn before the Dartford Crossings again, and we were able to go south once more. However, C did manage to upset me a little with the driving, although when we talked (and resolved things) later, it was down to the fact that she was trying to get us there in time. (If anyone sees a copy of that ‘M25 and around’ map, let me know – saw one on the window of a clearance store, but they had none for sale last time I asked).
So, M25, M23, A23, A27 Brighton by-pass to Sussex University, down Falmer Road to Woodingdean, for my 1900 appointment at the Sussex Nuffield Hospital. Before arriving, we (naturally) got stuck at the Downs Hotel traffic lights. As you may recall from previous visits, many passengers and staff are emblazoned high on the sides of Brighton & Hove Buses double deck fleet. So, which one was it waiting? Naturally, the bus was Scania 608, featuring none other than B&H mechanic Gethin Donaldson on the offside. I found him by chance on Bebo, after seeing this vehicle several times on the 2/2A through Woodingdean!
After booking in, and following the directions to go down the corridor after the second door on the left, we’d gone the wrong way – apparently they’d moved him to a room which was basically just by the entrance. (Unfortunately, no-one told the receptionist, which is why I ignored the large sign asking Phil’s patients to come this way!) We sat in the waiting area, he was running a little behind, but was still quite eager to see what could be done.
Physical time – and he defied logic, and was, shall we say, successfully able to position his fingers to make a diagnosis (I can still feel it now, which is probably TMI but what the hell!) It IS a cyst, and he’s able to resolve it. Yes, the PCT are able to fund it – and I am looking at a one-day procedure, probably staying in that night because of distance, but just the one. This is probably 2-3 months away, at the Princess Royal Hospital, Haywards Heath.
(Maybe a little OT here but I recognised it from a bus timing point and destination (amongst others, Countyliner’s Service 40X runs hourly to/from hospitals in Brighton, using MAN/MCV Evolutions. The service operates with Trust funding allowing patients and staff to travel for free).
AFAIK there will be no need for any other changes in the run-up to the surgery, and (thankfully) no extended stay therein – has to be a good thing!
While I was a little shaken up following the journey and the consultation, I was starting to relax. This was helped by dinner at the local takeaway (I didn’t fancy more than a few bites before going in), before (at my request) we drove down Falmer Road to Rottingdean (pronounced Ro’dean apparently), and then along the coast before turning up West Street, past the railway station, and up Dyke Road and Dyke Road Avenue (avoiding the bus lanes and gates!) We stopped at the traffic lights at the Dyke Tavern, which (given the local residents) might sound a slightly unfortunate choice of words. However, we continued along through Devil’s Dyke back to the A23.
It was then that we deviated off to go through Haywards Heath, and I realised that my trips through here had been by train. Aah well. Now I had to negotiate our way through with the atlas, but did manage to get us to the PRH. Looks nice enough anyway. Back to the A23 via the filling station for a quick drink and chocolate, before back to the A23, M23, M25, A282 Dartford Tunnel this way, M25, M11 to Duxford, A505, and back to Royston. We got back around midnight, and it still took me a while to sleep…
… until about 0720 this [Wednesday] morning, when Caroline woke me for the second time (with coffee!) We had to leave at 0830 to allow for traffic for my appointment at Addenbrooke’s Hospital Forvie Site Brain Repair Centre for the HD clinic appointment previously booked. Slightly shorter than last time (Dr Barker is away, so it was Dr Wright), just a few tests, and lots of discussion and questions. Following this, the doc has asked my doctor to prescribe me Olanzapie (at a low 2.5mg to start with) to try and level things out, and building this up. If this is helpful, then it may eventually replace some of the other meds I’m on. It does make you more tired (although it may help with the sleep deprivation issues), and can make you put on weight – just like the rest of my meds – but, surprisingly, I was actually about five kilos less than the last time I weighed myself at home. Maybe it’s just the tolerance range, but it was something else to add.
Now at home, and having unpacked finally (we left most things in the car last night), tidied up, checked bank and other things, and now able to relax. Lets hope this is the start of the beginning, not the beginning of the end.
Today was a busy one too – after C’s two appointments this morning (and wait for blood tests afterwards), I’ve been trying to catch up since. Tomorrow, of course, is an evening appointment at Sussex Nuffield Hospital, Brighton, at 1900, then back in time for Wednesday morning 0930 at the Forvie/HD clinic at Addenbrookes Hospital, Cambridge! Thursday, not just a CMA due in, then a discussion with the woman from ICAS in regards to the doctor who got us in this mess in the first place!
In the meantime, yes, it’s been hectic all around. Many things happening. Most important for me being new phones (the last cordless phones were cutting out after less than five minutes, after four years of use), and a new Apple aluminium thin keyboard, which is useful for having all the keys in the right places (versus a PC one) and having a visible Caps Lock light (useful for when trying to TAB and hitting it inadvertently!) Sound simple, but it’s the things that I spend most time with. Also, lots of purchases, one leaving the flat – we’ve sold the colour laser printer via eBay, and replaced it with a mono one. No major problems, just an issue with cost of refilling it every few months working out more than we had hoped. The sale has helped pay for it’s replacement. Also, on Friday and Sunday, we had stops at Lush Cambridge for several armfuls of items.
Transport – meh, lots to talk about. I’ll come back to that.
So, I’m kind of in two minds, but then again, maybe that’s inevitable. (If you’ve just started reading my journal, you may wish to go back over the lump/bulge/bigger issues since November 2008). As to how I’ve ended up with two referrals for one set of work, well, that’s something else. Just hope that one way or another, this can be looked at, and diagnosed with whatever.
I had kind of hoped to say something thoughtful and monumental. It’s almost like being at the beginning again. Remember back to March 30/31 and April 1 2007, when I first came down for an appointment at the hospital – and ended up falling in love with Caroline. Many thoughts through my head that day – but the main reason for going was, of course, a prequel to surgery. As for everything that happened between those two things, well, what is done is done. In the meantime, I’ve became a better person for being in love, but that might still be skirting the situation. The reason for going down, is, of course, going to lead (eventually, more than likely) to some further surgical work. I shall take one day at a time on that score.
In the meantime, Wednesday morning, and it’s the Genetics thing again. Now, I’ve got this, like it or not. I’ve been trying to split bad feelings to between what should normally be expected (hormonal ups and downs), feelings of anxiety/depression (I’ve begun to think that it is mostly anxiety, but depression perhaps at certain times), and potentially explosive reactions that I’d seen before from my father. Of course, he couldn’t control the latter, and it’s not easy to watch. Especially when I didn’t know why, at that time. However, it does allow me to know what to watch out for – hope that doesn’t sound bad, but I frequently have to take the best of bad situations! Over the last few months, stability/walking has been an issue. Okay, I did have a fairly bad fall (well two of them one evening peak in central London) and that didn’t help – physically or mentally. It’s not a good thing to be walking and falling face-first. Especially when it’s not the first time. I am trying to take things a little easier for now. It’s kind of just as well that we’ve settled in where we are, for now, but never say never. So, how can I work around this? By putting the experience of bad days behind me, and vowing to live for the good ones. However, there’s a slight drawback in having to reveal all my personal problems in the last six months, in the space of several hours… and hopefully, some sleep.
I’ve done many things more than once in my life. Is this going to be the start of another journey, through the remaining months and years of my life? Trying to make the best of life as I can, as we are, and surviving through the bad times. I’d like to give it a go.
So, what popped through the door this morning? Yes, an appointment to see Phil Thomas at the Sussex Nuffield Hospital, on the Tuesday between those three appointments, at 1930! Well, Woodingdean to Forvie (Addenbrookes BRC) in 12 and a half hours is doable...
...You wait forever, and then... you've guessed it - two surgery appointments at once, not to mention (between the two of us) four appointments in 48 hrs 10 mins...
... is their a bidding war on my fanny at the moment?
Highlights of the week…
* Getting 82% on TMA02 on Open Uni course M150. This was especially good, as the evening of the deadline saw a number of problems, including me inadvertently destroying the USB drive with the work on it, after I raised my knee into the edge of Caroline’s Mac PowerBook. Then, losing the pictures and formatting from within the document… anyway, as can be seen, a good recovery was made!
* Some good and bad moments. Lack of energy and pain is affecting my mood, as well as other issues. I’ve been trying not to get too badly upset.
* Appointment confirmed with the GIC in west London in little over four weeks time. It did look like it was going to be in the same week as my next genetics appointment, but the latter has been brought forward at my request (she said that they would if they had a cancellation). Thankfully not the same week, but also, it’s the same week at Caroline’s two appointments in the same morning at Addenbrooke’s, the cut-off date for the second CMA for T175, the BABUS AGM, as well as Fathers Day, which I have a gift to parcel up and send off in due course.
* Friday, oh dear. After getting the letter re the GIC appointment, was about ready to go out for the train to Cambridge. No, someone was on the track at London Kings Cross, so everything on the way out was at a standstill. So, I went for the bus… had to get cash, did so, managed to make it around, and it was a unexpected surprise, Stagecoach Trident 17078 on the 26! Took that into Cambridge, then onto work. After work, on the way home, my shoes managed to split at the top (canvas summer type that C somehow didn’t like after all…) and as a result, it came off my foot in the middle of Cambridge Emmanuel Street, with just a few minutes to go before the bus back to Royston. So, limped around to Drummer Street with one shoe on…
* Saturday, almost equal fun. After getting a forwarded election communication that Scottish Labour sent to my old address, asking locals not to vote SNP (not long after they’ve taken control of the City Council), I wondered what chance a Scottish Nationalist would stand if up for election in North Hertfordshire… not me, but just the chances of… anyway, we went out to Cambridge to the Lucky Star buffet followed by the cinema next door, C wanted to watch Angels And Demons, which she had also been reading. More shoe problems… mind you, following the previous day’s incident, purchase of a book on the history of footwear was an inspired purchase (perhaps) at the booksale earlier – along with a large Spanish dictionary, with attached USB drive. We’ll see.
* About to make lunch for the both of us – it is our 26 month anniversary today.
Also, many thanks to the lovely shullie for a lovely long black goth style skirt purchased via eBay - doesn't look too huge on me, but then again, there is an obvious size difference... now, off to work in a bit!
As I mentioned before, we were out last weekend, and I bought some Garnier Herbashine 565 (Red Mahogany) crème colourant (hair colour), which C applied on Monday evening. I was out on Tuesday at work, swapping with the person who normally does this shift, as she couldn’t do this Friday. Got the book finally finished and launched on Friday, see separate post.
I’ve touched on the problems we’ve had with the doctor. Turns out that he’d not done a lot of the things we’d asked him to, often taking ages before getting a response within a few days, and blaming everyone else for these problems. After perusing our notes on Wednesday night at the surgery, it is a lot more of a detailed problem (and much more of it happening) than I’d first imagined. Detailed complaint ongoing, but we were very impressed with the female doctor we saw, and who deals with admin. We think we’d like to see her in future, and have asked for this. In the meantime, keep watching.
This week was not perfect. I did get some rather bad feelings throughout, and I thought these had passed. I remember my dad getting rather angry etc. around this stage too, and (with everything inherited and stuff) it seems as if this might be the start of a slope. When I mention that there are bad days and good days, I'd certainly had many bad days of late. Once again, I now find myself looking forward to a better week ahead.
This weekend, today is a quiet one. We’ve got a grocery delivery coming later, and might be heading out tomorrow.
This is why I’m a bit behind – but now catching up slowly.
Oh yeah, and we’ve had a reply from our doctor, re my complaint. The letter to Charing Cross has now gone off… lets see what happens next.
(p.s. So why the title? Don’t know, the album title A Sudden Rush Of Blood To The Head came to mind earlier in the week, so decided to play around with it).