Archives: Friends

In case you haven’t read it, please check out the ‘A message from your host’ post which is before this, it’s a very special post that I know you’ll want to read.  I wasn’t keen on writing over it but I’ve had my orders to keep everyone updated and now Oli can run faster than me I’d better not make him grumpy!

Today has been anothr great day, I really can’t think of a time when I’ve been as happy as this, it’s the best feeling in the world. 

When Oli’s Mum and I got in to see him this morning we found a sad and tired Oli who didn’t really want to play this game anymore, I think the night on dialysis hadn’t helped him get any sleep and the extra fluid around his body (all 8 litres of it, not nice) was making him so unformfortable that he didn’t know where to put himself.  Oli’s Mum got sent off pretty quickly to go on an apple juice hunt and I just sat myself near him, at the end of his bed.  After a couple of quiet minutes he looked at me and said “I need to pull myself out of this don’t I?” and we came to the decision that I was going to put some music on the cd player (thanks Kate!) and Oli was going to sit up and be more positive.  From that moment on Oli’s day just got better and better, and better!

The Big Head Dude Doc Man (who needs capital letters because he is that important) came in to see Oli and decided that the majority of his remaining wires, tubes and drain should be taken off.  We were so happy!  The central line, which has 3 or 4 lines in it and is in no way connected to the London Tube, in Oli’s neck has been removed and instead they have re-accessed Oli’s portacath which will be used for his IV drugs.  The arterial line (I don’t know what this was for, I think it may have been blood gases) from his groin has been removed, the final chest drain has been removed and he is no longer on the cardiac monitor. 

The reason for all of this, apart from being well enough to be taken off of everything, is because of all this nasty extra fluid.  The overnight filtering has really helped, last night 2 litres of extra fluid were removed by this dialysis machine, but the body will be able to shift the fluid much more easily if Oli is able to do more physio, which in turn is easier to do when wireless.  The lines in Oli now are the port when it’s in use, the vas-cath (in his groin where he connects up to the dialysis machine at night) and his catheter.  Hopefully the vas-cath will come out tomorrow and once the extra fluid comes down and they are needing to check his urine output so much, the catheter will also get removed.  I’m not sure how long they will give Oli the IV drugs but at some point they will stop using his port and give him oral antibiotics instead.

This evening Oli doubled his 40m record.  It’s so amazing!  I wasn’t there for it but Oli phoned me to tell me and the joy and emotion in his voice made me want to cry with happiness – this is someone who 3 weeks ago was really quite poorly and got out of breath getting out of bed, this really has been the gift of a lifetime for Oli, and for us.  Oli was telling me how he walked from his room to the end of the ward and back and said that the nurses were beaming at him and the kitchen porter guy (official title, I’m sure) was cheering him on and telling him how good he looked!  Oli also said how he met a nurse he hasn’t met yet, she asked him what he’d had done and that made him realise HE hasn’t told anyone yet – lots of people know but not from him, for the first time he said ‘I had a double lung transplant nearly 3 weeks ago’ and when he looked over and saw his nurse’s face, Oli could see exactly why this nurse did his job, Oli said it was such a picture.

This evening Oli was able to spend a lot of time with his Big Bro who has come up to see him for the weekend, this is the same legendary Big Bro who gave the butt kicking last week.  Wow, must this be a different Little Bro he is seeing!  Following his legendary form, Big Bro has set Oli a challenge that has been agreed to (witnessed by Oli’s Dad, so no getting out of it).  On April 10th 2008 Oli will run alongside his Bro and his Bro’s marines for the first mile of the CF Trust’s Tresco Marathon.  How unbelievable is that?!  I’m thinking that all those who promised to wield big sticks at the previous exercise programme might need to get those sticks out again!

Bring it on!

It’s Oli here. Hello! This won’t be long as it’s quite hard to type long things on my ‘berry and i’m still not up to much in the way of telephonic communication.

I really wanted to write to thank every single one of you for your wonderful prayers, thoughts, best wishes card, messasges and comments on the blog – all of which get emailed through to me on my phone.

I’m sorry i’m not replying or responding, but things are still pretty up and down and my hands are so shaky that texting is tricky. Kati’s update on the day will tell you much more, but things are improving greatly.

It means so much to get your messsages and read your words of support. I promise I’ll get round to a proper catch-up with everyone soon.

Take good care of yourselves cos i’m coming for hugs when I get out!

*Before you begin to read please make sure you are comfortable, this may turn into a long rambling post, apologies!*

Oli is doing so well.  I was really excited today because I haven’t seen him since Thursday and even then he was asleep.  I have to admit, I was a little nervous about seeing him because I didn’t know what to expect, in my head was a picture of a very poorly Oli attached to everything and not very communicative.  I was sooooo wrong!  Oli was sat in a chair, next to his bed, when his Mum and I walked in at 10.30 this morning. 

I don’t know how much you guys know but ITU has very strict visiting times, necessarily so, it’s a busy place.  In the morning visiting time begins at 10am and finishes at 1pm, there is a break for a couple of hours and the second visiting slot starts at 3pm and finishes for the day at 7.45pm.  I would have thought that the majority of people in ITU are heavily sedated and so the time could potentially pass by without them taking too much notice.  Unfortunately for anyone who is completely aware of goings on (if maybe a little confused and overwhelmed every now and then), the tiny visiting slots are very precious times that need to be filled with constant, loving company.

These tiny visiting slots are often made even smaller due to the current system of intercom admittance to the unit.  I really want to point out before I go any further that this is definitely not a criticism of the staff who work in the unit.  Every member of staff I have seen there has been working so unbelievably hard and doing their job of taking care of very poorly people. 

HOWEVER, the intercom system does not work as efficiently as the staff of the unit.  It works like this… Visitor presses intercom buzzer, buzzer is answered and visitor announces who they are and who they want to see, ITU person goes to check that the patient is ok to accept visitors and then returns to buzzer to let visitor in.  Sounds simple?  It should do, but it can take a long time for the buzzer to be answered, the ITU person can fail to come back to let you know if you can visit or not, the ITU person doesn’t press the admittance button to open the door so you have to go back and press the buzzer, blah, blah, blah. 

So today, Oli’s Mum and I arrived at 10am but didn’t get an answer to the buzzer until 10.30am and when we got to Oli we found him quite distressed as he’d been told that no visitors were waiting to see him.  It may sound small but it’s a BIG thing.  Try to imagine being hooked up to all kinds of things, alone in a bed for 14 hours without any form of entertainment, feeling scared and clock watching, hanging on to the hope that at 10am your Mum will come in and give you a hug.  I really felt for him when we found out that he’d been told that no-one was there for him, he had suddenly turned into a tiny, scared little boy whose Mummy hadn’t turned up to collect him from playgroup.  I’d love to help them find a way of making the intercom system run more smoothly, it makes so much of a difference to patients.

So ramble over and back to Oli.  He is good, he looks good and I couldn’t believe that he was sitting up, out of bed.  After the initial drama he was chatty, until he got tired, and seems to be completely ‘with it’.  His is no longer on kidney dialysis as his body has corrected the imbalance of sodium, potassium, etc.  He is on a little bit of oxygen, via nasal specs, but is largely as we left him on Thursday.  The drain for the important leaky fluid is at a good level and all things being well he will be drain free in a week or so.

Luckily for us the doctors came to see Oli while we were with him so we got to listen in to what they were saying.  The overall message from them is very positive.  They are happy with the way things are going and although they would like Oli to stay in ITU for another 24hrs, they are very happy for him to go back to the ward at the beginning of the week, once the ward has a bed available.

I have to say that at this point I am just so happy that Oli is doing well after the scare on Friday.  Friday hit us pretty hard as we’d maybe forgotten that it was still early days and been swept up in how well he was doing.  However, all credit to Oli and the doctors, they responded quickly and did what they hoped was the right thing and Oli has been so strong, physically and mentally throughout this.  To me he doesn’t appear discouraged that he is back in ITU after being on the ward so quickly after the transplant, if anything, it has made him more determined to do what he needs to do to get back to the ward.

We must remember that we’re still only just setting out on this journey.  We’re going to have lots of wobbles, hopefully not too many lows and more than a few highs.  I think my outlook is to enjoy the highs and take care of the lows when they happen. I want Oli to feel proud of himself for fighting so hard and to add these battles to his armour and use them to attack the next lows but it really helps him and us to know that we’re not alone on this journey and that you’re all with us every step of the way.  Thank you so very much for sticking with us, it means a great deal x

Sorry, have had that song in my head all day and it has had to come out somewhere! 

Oli has been on the exercise bike today!!! 

He managed 4 whole minutes and, much to his surprise, conducted a conversation whilst cycling.  Anyone who knows Oli, knows anyone with CF, has CF, is just plain rubbish at exercise (that’s my category), will understand that is pretty amazing and is definitely ‘up there’ in Oli’s list of All Time Greatest Achievements Ever.

His mood has remained buoyant and although I got there too late to witness it, I have it on good authority that he has been excited about all the things he will be able to do.

A slight bump in the road to recovery means that tomorrow morning Oli will be going back to theatre for a very brief operation to tie up something that is leaking very useful fluid (isn’t my medical knowledge astounding?!).  I have been told several times what the actual reason and procedure is but my brain is also leaking very useful knowledge.

This may sound like a step back and it will put him back on epidural and catheter again but it is in fact a really simple op (fingers crossed there are no complications).  Once Oli is over the sleepiness of the anaesthetic, he should be able to be tube free in a week or so.

I will of course let you all know how tomorrow goes but please be reassured that I’m not concerned about the op and so you guys needn’t be either.  I’ll let you know when to worry and when to cheer (and when to boo and hiss, just as it’s nearly panto season).

Today didn’t get off to a great start but has ended on such a high, even as I write I can’t get a stupidly happy smile off my face.

As far as I can gather this morning was pretty rubbish.  Lots of things happened all at once and although none of them were particularly drastic, they didn’t help improve Oli’s already negative frame of mind.  Big bro was there thoroughout the morning and after a while deemed it necessary to give younger brother Oliver (because you always get called by your full name when you’re about to get told off) a bit of a talking to about taking a fresh perspective on things and seeing that things may not be as bad as all that.  Big bro is a muchly big legend and after leaving Oli to think things through, Oli had the biggest turnaround I think I’ve ever seen.

I have to admit I haven’t seen Oli now for two days as I have a very important Uni’ interview next week that needs a lot of prepping for.  It hasn’t been much fun not seeing him,  especially when I know he has been having a difficult time, however now I know that this afternoon he has been chatting, laughing, exercising, and more  I couldn’t be happier.

I have proof of happiness, too.  At some point this afternoon my phone rang with Oli’s number showing.  My immediate thought was along the lines of “who could be ringing me from Oli’s phone?”, who else but the man himself!!!  Yay!  I couldn’t believe he felt well enough to even look at his phone, let alone call.  What’s more, we had a good few minutes chat, mostly from his end as I couldn’t stop repeating “I can’t believe you”re calling!”.  This evening more happy surprises came through as Oli sent me some text messages, and because he managed to link a few together to make another conversation put me back on cloud nine!

This really represents a massive breakthrough for Oli’s mental state, he’s had such a bad time over the past few days, being stuck under a big black cloud and taking the big black dog for a walk.  It’s so great to hear from him and know that he really feels happier and is able to look positively at his achievements and see what’s ahead in a positive light.

We’re on such a journey together, all of us, and we’re going to come across many ups and downs.  It’s so important to treasure the good as it’s often what can help you get through the bad.  It’s also really important to have a big brother to give you a kick up the pants every now and then! 

Oli’s progressing steadily now.  Physically it seems like everyday another tube/drain/wire is removed (I strangely now have an image of ker-plunk! – forgive me, I am very tired).  Even his catheter has been removed today, which although meant a big ouch, also means that the team are happy with his fluid outout and also means that he will have to physically exert himself a little everytime he needs to pee (sorry, too much information).

Mentally, he is taking things hard.  A lot of it due to the remaining tubes still pumping in various drug cocktails.  Anxiety is a big issue right now but the nurses are fantastic with him and have clearly seen all of this behaviour many times before.  Alongside the anxiety are confusion and disorientation, both of these add to the anxiety.

It is still very important to remember that it is early days, as I am writing this, Oli was just about to head into theatre this time last week.  Oli is progressing very well and hitting all targets that the team look for and is certainly not taking any steps back.  Physically, Oli is nigh on exactly where he ‘should be’ (a term used very loosely as recovery is a very individual thing and can’t really be generalised).  However, he is still very scared that something might go wrong. 

The support you have all given Oli so far has been phenomenal.  Please don’t stop your prayers and good wishes for Oli as he needs them just as much now as he did a week ago. 

Please also remember the donor’s family as I can imagine they are still very much mourning the loss of a loved one in the time when a lot of people are in high spirits for the approaching Christmas. I’m sure they’re not feeling too Christmassy right now and could do with lots of love heading their way.

Lots of love from me x

Today has been, hands down, one of the hardest days I’ve had in a very long while – harking back really as far as my admission in June, where every day was a challenge.

Luckily, the benefit of hindsight and such tells me that it’s not quite that bad – one horrible day in a week can’t possibly be as bad as one passable day in a week – but it’s only thanks to a little bit of let-up in the relentless onslaught of tiredness, breathlessness and exhaustion that allows me an ounce of philosophy in my outlook.

It started, oddly, not too badly – I woke this morning having had very little sleep but not feeling too bad about it. I clearly had a lot on my chest, but was also managing to get quite a bit off just by being up and about. Early mornings are usually the time when you find out what kind of crap is on your chest, since the very process of getting up and moving around tends to make you cough and splutter, which in turn lets you see a) how productive you are b) how easily it’s moving and c) how out-of-breath it makes you when you do.

I was moving stuff pretty easily, although it was exhausting to cough and my throat was still causing problems with getting the big lumps up. (Nice, I know, but this is a full-disclosure blog, so if you don’t like it it’s not for you, I guess!). Having got my morning dose of drugs out of the way, I crawled back to bed feeling breathless but not too bad.

I woke again around 12.30, later than I’d planned and wanted to. With a 2.30 appointment in Oxford, I’d have to be out of the house in under an hour, so would need to pick and choose the most important elements out of bathing, dressing, eating, doing physio and doing nebs, as well as getting my things together for the Oxford trip (it always involves taking a book things as well as my physio-helping device, which all need to be collected into a bag – it may not sound like much but believe me, it was a task-and-a-half today).

I settled on food and nebs being the two most important things, so threw on some clothes in a very slow and deliberate manner and made a sandwich, which I sat and munched before doing a neb and collecting my things, all of which filled the next 45 minutes and made me incredibly, uncomfortably breathless.

At Oxford things didn’t improve a whole lot. My nurse changed my port needle, which was fine with the exception of the bioclusive (clear plastic) dressing pulling off a good chunk of surface skin by my under-arm area, which was then healthily swabbed with alcohol prior to the insertion of the new needle. Yes, it smarts.

My physio session was really, really hard work – harder than I’ve had for a long time. I was breathless, tired and my airways were irritable and not playing ball, the gunk on my chest refusing to be moved around and brought up, so it felt like we weren’t really achieving much.

Seeing as I’m now sliding into my 4th week on IVs, the team wanted me to check in with the Doc to see if they wanted to do anything different. I’m loathe to change anything at the moment for several reasons, partially because I believe that once I’ve kicked the cold the drugs will do their job, but mostly because any change in IVs is likely to mean switching to one that I don’t get on with quite so well, which in turn would mean that they’d have to have me in and on the ward for a few days so they could keep an eye on me. I’m not keen on the ward at the best of times, but when I’m not getting a whole lot of sleep at home, it’s even less appealing because I know that I won’t get any on the ward.

While I was waiting to be fitted into the doc’s queue, I had another fantastic session of physio with the wonderful back/neck specialist, who worked me over really well. She did what she calls “mobilizing the joints” followed by “mobilizing the soft tissue”. One of the nurses said that the soft-tissue stuff looked like a massage to her, but the physio helpfully pointed out that the big difference was that massages are pleasurable.

Neck attacked, I popped across to the clinic to catch up with the doc, who reluctantly agreed to give the drugs a few days to see if they can kick in after the cold. We agreed that if things are no better by the weekend, then I’ll be straight in. If I’m picking up they’ll leave me out and check my progress after the weekend and we’ll see where we stand.

By this time it was well after 4.30, which meant a slow journey home in the evening traffic. We made an executive decision to take the scenic route which, although dark and not at all scenic, would at least guarantee that we’d be back inside an hour and a half, which is impossible to be sure of if you take the A34.

Back home just after 6 I was completely exhausted, to the level of a childish sense of having no idea what to do with myself. Every single part of me wanted to go to sleep, but I knew if I did I would have no chance at all of getting to sleep. Instead, I sat myself in the study chair to be as comfy as possible and surfed the ‘net for a while, before hopping into a bath to try and freshen up a bit.

It worked – to a limited extent – and we then managed to get through our usual Wednesday night where our bestest bud Dazz pops in to catch up on a Sky+’d ep of Entourage (our guilty pleasure) followed by this week’s Heroes.

With those out of the way, I didn’t have much else to do with myself than dump my exhuasted, knackered, b*ggered old body in the sack and pray for a good night’s sleep. And while I was there, I put in a small request to have a better day tomorrow, please, too.

I am very much asleep when the alarm goes off this morning and I prize myself out of bed in a slow and careful manner. Drugs duely flowing, I try my hardest to stay awake while they run through, watching some Making of Toy Story DVD as I do.

Once the drugs are done I’m about focused enough to run K into work, but when I get home I take myself straight back to bed for another hour’s kip, which is rudely interrupted 45 mins in (just when it’s about perfect snoozing) by the postman, who can’t let himself in again (to the building, that is – he doesn’t try to break into our flat of a morning).

I decide it’s pointless trying to re-claim my 15 minutes and so head for a bath instead, then check my email quickly before Mum arrives to whisk me over to Oxford for my physio appointment.

My CF team in Oxford have recently reached a deal with the physio department whereby they can cross-pollinate departments – whereas I used to only be able to see chest-specialist physios (who are paid for under the CF-care banner) if I wanted to see any other type of physio, it would have to be a paid-for referral either from my GP (who’s in the wrong PCT) or the chest team (who can’t afford the extra fees). Charging issues ironed out, however, I am free to go and see a muscular-skeletal physio who is part of the Churchill team up the corridor from my usual clinic.

What a difference a specialist makes. My two regular physios sat in on the session too, eager to learn the basics of what they could do to help me (and others) out with my neck/back problems, all of which stem from the extra work my respiratory muscles are having to do to make up for the cruddy condition of my lungs. After half and hour’s poking, prodding and manipulation, I can already feel a difference, and the physio promises if I can get up there every week she’ll find 10 minutes to have another go and keep the main parts mobilized, with the eventual aim that I’ll be able to strengthen the muscles back up to pull more weight without so much strain.

After my neck session, I head down to the treatment centre with my regular physio for a regular chest physio session, at which we also do my L-F, which stands back up at a healthy (relatively) 0.8/1.5, which is good to see. Even more astonishingly, my weight has now hit 56kg on the clinic scales, and that’s without a thick jumper on. I’ve NEVER been this heavy before, and it feels like a real achievement.

Back home I feel terrible because K’s had a bad day at work and only been home half an hour but all I can do when I walk in the door is fold myself into bed and fall asleep. Rested an recovered after an hour or so, I try to make it up with Tea (which is usually a good place to start) and she appears not to harbour any of the kind of grudge I think I would given reversed circumstances. It’s times like these that my “frailties” really bug me – it seems such a small thing to ask to be able just to chill and have a cuddle after a bad day, but when I’m tired, especially from travel, I’m really not in a state to do anything. What makes K so wonderful is the fact that no matter what the situation, she never complains at all.

In the evening, an old school friend who’s recently moved back over from France pops round and we have a giggle-some night of pizza and board games. We discover, much to our disppointment, that Operation really isn’t that difficult if you’re any older than about 10. None of us had played it for years, but he’d had it at home and thought it was in marvelously bad taste to bring it round (which we both readily agreed). Naturally, they let me win, since otherwise it would just have been rude.

Another couple of games of Scene It (of which I won neither, let the record show – for those of you who think I must just walk it every time), and B headed off home. My drugs were due later than normal because of bad planning on my part so K headed to bed while I did my last dose, watching some Sky+’d Simpsons and the start of The American President, which I’d recorded a while ago before surfing the ‘net for a while during my evening nebs.

I eventually make it to bed about 1.30am, where I read Kevin Smith just long enough to make my eyelids heavy then settle down for the night.

I have discovered a new feature on my blog which allows me to change the datestamp on the posts, so I can post an entry for Thursday after typing it up on a Saturday (exactly what I’m doing now). This excites me because a) it means I can technically never miss a day’s blogging without feeling like I have to write something hilarious at midnight when I’m straining to keep my eyes awake, b) I can better keep track of all the things I do from day-to-day without having to write a single, enormously long post at the end of the week or such.

Really, the excitement stems from having got lost in re-reading Kevin Smith’s diaries, which I used to follow avidly on his website but have now been published in paperback form. What occurred to me as I waded back in to them (alongside memories of their first reading as long ago as 2005) is that part of the reason for creating this blog was not only to try to give myself a kick up the butt when I needed one, but also to have something on which I could look back in a few years time (God willing) and help me to remember what life was like “way back when” in my old life with rubbish lungs.

So I’m hoping to keep a slightly more day-to-day diary of events from here on out, although I’m sure they will still be peppered with the usual random tangents and streams-of-consciousness as all my posts have ever been.

So anyway, Thursday (today… wait, that’s weird…) saw me waking, annoyingly, 10 minutes before my alarm went off. I say annoyingly, but actually, thinking about it, it’s quite nice to wake up naturally, even if the first impulse on waking to roll over and drift back off to sleep has to be fought off to get up and set the a.m. dose of drugs flowing. Which I manage to do.

I park myself, still slightly dazed, in the chair by the telly and watch something or other while the drugs kick in. By the time they’re done, I’m actually nearly awake, which is quite rare for drug-mornings. I stick on the extras disk from Lost Season 3 (which we finished last night) and immerse myself in behind-the-scenes stuff which always gets my creative-juices flowing.

At 10 I wake K up as we have a visit from our littlest niece and nephew and she just about manages to roll out of bed in time to greet them at the door. They are so excited to get here it’s almost magical, and no sooner are they in the living room than they’re up on the sofa bouncing their heads off or pulling the contents of the coffee table off onto the floor.

We sit and drink tea with their Mum while they tear the place apart (in a nice way) and we play with anything we can find to play with. Most excitingly, because of the delivery of drugs I had yesterday, we have a big, empty cardboard box to play with, which ends up getting decorated with colouring pencils.

I grab my camera and get some super-cute shots of them as they run around, including some wonderful full-paparazzi-style shots of the little on, hand extended at the camera in “get out of my face” mode.

They leave around lunch time and I immediately crash out back in bed. I’m pretty impressed that they didn’t actually totally exhaust me, but I know for sure that if I don’t take the chance to recharge my batteries now, I’m not going to make it through the rest of the day unscathed, and with the hint of a cold still around, I don’t want to use all my energy up.

I wake up a couple of hours later and feel strong enough to run K to college, which cheers me up as I’d assumed I would be house-bound most of this week. I drop her off and head home, spending the next hour or so on the ‘net checking emails and getting a little lost in Facebook, as is my unfortunate tendency.

K calls in a seriously foul mood (justifiably, after a completely wasted and pointless night at a poor excuse for an educational establishment – shame on you Milton Keynes College) and I run out to pick her up.

We get back to find an old friend of mine from the Theatre in the car park, where she’d been waiting for me to get back (I thought K was going to be out longer, so I’d be around to let her in before I had to shoot off to pick her up, but ended up leaving her parked outside for 20 mins while I did the school run). We go upstairs and grab a cuppa while catching up on anything and everything from the last 6-months or so. She has a lot more to share than I do…

In fact, I hadn’t seen her since before she went off on a jungle-trek to Thailand in the summer, through which she raised over £7,000 for the CF Trust and nearly died in the process after an unfortunate incident with a bamboo raft and a set of rain-forest rapids. She fills us in on all the details of everything and it sounds like an amazing trip.

What was intended to be a quick cuppa turns into a lengthy evening’s nattering, which eventually ends with her taking her leave about 10pm. K and I settle on the sofa while I do my drugs and watch tonight’s episode of Studio 60, then hit the sack just before midnight.

It’s been a nervous 24 hours here since the cold reared its head and it was made all the worse last night after I spotted a problem with the line into my port through which I give my IV’s.

I noticed while I was doing my afternoon dose that the line had gone a little cloudy, but didn’t think much of it.  By the evening dose, it hadn’t cleared up (as sometimes happens) and had a couple of distinct breaks in the cloudiness which started to concern me slightly.

Anyone with a port-a-cath will tell you how protective they are of them, not least people in my position as the loss of use of a post through breakage or – God forbid – infection is a serious problem: replacing ports is not the kind of thing that can be done on a whim and while it isn’t what you’d term “major” surgery, it’s certainly more than most doctors would like to be performing on someone with end-stage lung disease.

With all these thoughts running through my head, I took the executive decision to not give my next dose of IV’s until I’d been to Oxford to get it looked at and replace the needle and line for a new one.

After a late-night phone call with Mum, we hastily arranged a lunch-time pick up when she finished work (trampling all over any other plans for the day she may have had) and I settled down for the night after pumping another mini-monsoon of First Defence up my nose and downing a handful of Vitamin C caps to try to ward the cold off, too.

For once I slept absolutely beautifully.  Without my morning dose of dugs to do, I slept clean through till 10am, when K’s alarm woke me.  Lucky it did, really, because it didn’t wake her, so she’d have been in a spot if it weren’t for my eagle-eyed sense of hearing. (Yeah, I know, that confused me, too.)  That said, I’m sure she’ll jump to defend herself having already been out of bed once to answer the door to a nice delivery man.

A quick call to my team in Oxford and the ever-brilliant Cass opened up a slot for me early in the afternoon.  I checked with Mum and we were all good to shoot on over once she’d got her morning at work out of the way.

I got up slowly and rumbled around the house, hesitantly waiting for the cold to hit with full force, but nothing really materialised.  My sinuses were much less clogged and though I struggled a little with my physio first thing, I managed to clear a good bit and get my nebs done before Mum arrived.  I grabbed some Lucozade for the journey and hopped in the car, leaving K at home for a study session with a college-mate.

Cass looked me over and gave my port a quick once-over and agreed that it didn’t seem to be anything too untoward, although she’d never seen anything like it either.  She swapped my needle out and reaccessed me, giving it a good flush to check it out and all seemed well.  We agreed that although the cold doesn’t seem to have taken hold, an extra week on the IVs wasn’t going to do any harm.  I can’t have been there more than 20 minutes before Mum whisked me off again, but it was worth the 3 hour round trip for the piece of mind it gave me.

We got home just before half-three and I connected up my afternoon dose of IVs and hit the sack to recharge my batteries.  I woke an hour later feeling really quite energised, hit my nebs and did some physio before dinner.

I think – touch wood – I’ve managed to ward the cold off, so am hoping that another good night’s rest and another day not doing too much should keep me back on the well-wagon and I can look forward to another weekend with family and friends.

Off to catch tonight’s episode of Heroes now – we’re all addicted and we’re only a few weeks from the end of the season!  Hooray!