Archives: Difficulties

I couldn’t sleep tonight, so I got myself up to check my emails, which have been neglected in the flurry of activity that included a double-shift at the Theatre today, and received a piece of news I’ve been dreading for a while.

An old friend of mine from the CF community lost her fight after a huge battle tonight.  She’d been in intensive care under sedation for a while and tonight she could no longer keep up the battle.

For reasons I found hard to fathom and now even harder to accept, her death has hit me so much harder than I ever thought it would.

Earlier this year, she gave birth to a son she’s wanted all of her life – a life which even ignoring CF has been tempestuous to say the least.  When she announced she was pregnant, I was really, really angry.  Discounting the numerous and serious risks posed to any mother with CF bearing a child, I felt it was a supremely selfish action to fulfill her own ideals without considering whether or not it was in the best interests of a child who could be left without a mother.

Hearing of her death tonight, all I’ve been able to think about is that I’ve not spoken to her in over a year, such was the strength of my feeling.

But you know what?  Who am I to judge?  Who am I to say whether someone should do the things they want to do, whether it’s irresponsible, inadvisable or selfish?  It’s not my place to suggest any of those things and it’s even more upsetting that I’ve let it cause such a rift.

I never even expressed my feelings to her – I never told her my opinions.  Why?  I honestly don’t know.  I guess I didn’t want to seem judgemental or to upset her, but surely I should have taken that as a warning sign that my “opinions” were unjustified and, frankly, just plain wrong.

“Life is for living” is the motto of another good friend of mine and we should all be living the life we want to live.  If I’ve learned one thing from my struggles over the last few years, it’s that the cliché of precious life encouraging a “live for the day” attitude is absolutely true.

I can’t explain the depth of regret I feel for not reaching out to T since the birth of her son, for not dropping the grudge or whatever you wish to call it.  For not making the effort to see if she needed my support, or even simply sending my congratulations.

Parenthood for PWCF is a very emotive subject and I’m all too aware that this post may well upset a few people.  But it’s something I feel a desperate need to explain, as it’s made me realise how wrong I have been and how incorrect it is of me to stand in judgement of the way other people live their lives.  I’ve always prided myself on being open, honest and – ironically – non-judgmental, but T’s death has shown me how I gloss over the cracks I don’t wish to see.

In a way, I feel I deserve the ire that’s bound to come my way – it would be, I suppose, a form of catharsis, helping me cement the knowledge that I should have kept a closer check on myself and remind me for the future that nothing is worth losing a friendship over and certainly not something that’s based on “opinions” or “feelings”.

Tor, I wish I could have said all of this to you.  I wish I could have sat down with you, laughed and giggled again, met E and L and told you how sorry I was that I let this get in the way.  I wish I could take back the last 18 months and keep in touch, share your joy in motherhood and see your smiling face again.

All I hope now is that, somewhere, you can read this and hear my prayers and find it in yourself to offer me forgiveness.  When I come up there to join you, the first round’s on me.

No, b*llocks to that – they’re all on me.

Breath easy, angel, smile down on us all.

It’s been an absolutely manic last couple of weeks, I literally haven’t had more than about an hour to myself in a single day since, well, actually, I honestly couldn’t tell you without looking back through my diary.

Suffice to say it’s been extremely hectic, but pretty good, too, I have to say.

Last weekend was spent with the Live Life Then Give Life gang, hashing out our plans for the next couple of years.  It’s a bizarre feeling to be mapping out plans that I actually believe I have a chance of being part of.  I’ve been so used to limiting my planning no further ahead than the next few weeks or couple of months, but now I find myself looking further and further into the future.  I have often helped people plan for things in the future – I’ve certainly helped Emma and Emily with it before, as I also did with K’s uni application – but I never really joined in with the expectation that I’d ever be a part of it.

Now things are looking brighter and brighter and my horizons are stretching further and further away.  It has just occurred to me that for the first time ever, I think, I’ve stopped worrying about whether or not I’m going to be around for things.  My cousin is just 6 weeks away from the birth of his first child and this time last year and for a good while before that, just the news of the pregnancy would have set me off wondering whether I’d ever get to see Baby P or not.  Sitting on the sofa tapping away now, I realise that the thought of not being around hadn’t even occurred to me up until now.  I guess this is what “normal” life is like!

Anyway, that’s the last couple of weeks.  Today was different again, being as I was engaged to speak at two different events in one day, both for the CF Trust.

First off, was back in an old haunt – the Mermaid Theatre (sorry, Conference and Events Centre) in Puddle Dock near Blackfriars, the very same Mermaid that supplied the venue for the enormously successful Laughter for Life event way back in February/March last year (for some reason I can never remember when it was without looking it up).

The event was a Parents and Carers conference that the Trust had laid on, this time for parents of teenagers following their enormously successful Under-12s conference previously.  I was engaged to speak, rather oddly for me, with my dad, which threw up all sorts of weirdness around having to “plan” what we were going to say.  Anyone who’s ever been to see me speak knows that generally, I just stand up and ramble for 10-15 minutes, but this time it was a joint presentation with Dad on teenage rebellion which was to last 30 minutes.  Nightmare.

Actually, it all went rather well.  The planing process was interesting in and of itself, sitting talking to Mum and Dad about how they dealt with the various ways I found to do myself a mischief back in the glory days of the 1990s.  I clearly put them through a great deal of angst through my teens, even though I don’t consider myself to have been a massively rebellious teenager (I’ve certainly come across many more people with CF who were far worse).

The speech went fantastically, though – we worked very well together as a team and managed to both entertain and inform the attendees, who seemed to spend most of the half-hour slot nodding in tacit agreement with everything Dad said about my various misdemeanors and rebellions.  Glad it helped.

Once that was over and we’d done a quick Q&A panel with the afternoon’s other speakers and spent some time chatting individually to some parents who came up to address specific points with us, it was then time to dith the grey one and for K and I to hop back in the car and head North up the M11 to Bishop Stortford, or there abouts.

One of the regional fundraising managers for the Trust had helped put on a ball for a couple with a teenage daughter with CF and had asked me to come and speak.  The very same Trust-lady who’d had me along to the Press Ball in Ipswich earlier in the summer, in fact.

The night was amazing – you’d have been hard pressed to find any hint of a credit crunch among the 150-strong crowd, who managed to raise by way of pledges and auction bids a total of £43,000.  Phenominal.

I was, to be honest, pretty diappointed with my speech.  The afternoon had taken so much planing I’d frankly neglected the evening’s event and didn’t allow myself sufficient time on the night to prepare myself properly and go over what I wanted to say and do.  That being said, I still received the usual praise from the people I spoke to, but I wasn’t pleased with myself for it.  Must do better next time, that’s how I’ve marked my report.

Still, it’s been a great day and I’ve enjoyed both events greatly.  The CF Trust has offered me so much advice and support for so long and through such tough times that it’s really important to me to continue to do whatever I can to help them and to offer, if I can, some crumbs of comfort or advice to people who may be struggling now.

Someone suggested this weekend that maybe I should think about getting myself on the after-dinner speaking circuit, which got me thinking.  If I was touring the country being paid for my time and talking to groups of business people for inspiration and the like, would I be as good at it as I am at the moment?  Is it the drive to inform and the will to get people to pledge ever-important donations for the work of the Trust or the transplant community that makes the speeches and talks what they are?  Would paid-for talks be able to engender the same passion and commitment?  I honestly don’t know.  Mind you, it can’t hurt to try…

This week we have been rudely invaded by the real world.  After 10 months of existing in a perfect little post-transplant bubble, the time has come to look at things that people out in the big wide beyond have to spend time looking at.

With K off to uni in 3 weeks and counting, she is, naturally, going to have to give up work.  The full-time commitment of the course, coupled with the 3-hour daily commute is going to sap every last bit of energy she has, making weekends a time for rest and recovery and not for the usual kind of student money-making that normally earns the bookworms a crust.

So it falls on me to start winning the bread for the house hold.  It’s a very strange position to be in, seeing as I haven’t been in paid employment since I left Northampton Theatres in April 2005, nearly three-and-a-half years ago.

One thing I’ve learned from friend-of-the-blog Emily is that returning straight into a ful-time job post-transplant is a bit of a no-no.  Although I now have more energy than I think I’ve ever had in my life (barring, maybe, my early years), that doesn’t automatically equate to being able to put up with the stamina required for a full-time job and the stresses and strains that go along with that.

Instead, I’m going to be looking for something smaller and more part-time, but then I hit the thorny issue of benefits.

At the moment, I’m still covered by incapacity benefits because I’ve been under doctor’s orders not to work.  The idea of incap is that in order to help you return to work, you are allowed to do a certain number of hours of paid work per week without incurring penalties on your benefits.  The trouble with incap is that once you pass the 16-hours-per-week threshold, you lose everything – there is no middle ground.

And it’s not just the incap that you lose.  Incap comes tied in with an entitlement to various other benefits including Housing Benefit and Council Tax Benefit, which basically means my rent and council tax are paid for me as my income isn’t high enough to cover them.

So, all-in-all, the loss of benefit will cost us in the region of £800 per month.  That’s an enormous gap to try to cover between working 16 hours per week on benefits and finding the rest of the money once you cross that line.  In effect, it means that you are forced to jump rom 16 hours per-week all the way up to a full-time 30-40 hour week with no middle ground and no safety net, beyond returning to incapacity benefit.

It sounds easy enough to try out full-time work and use the Incap as a fall-back option if you can’t cope, but that’s forgetting the psychological impact of going back to “illness”.  Everyone I know post-transplant has faught an incredible battle to get themselves back on their feat and rebuild new lives in the wake of a truly life-changing blessing.  What all that effort means, however, is that none of us want to return to the perception of “illness” that dogged us for years both before and initially post-transplant.

So the search for so-called “gainful” employment begins.  Where am I going to end up, who knows?  As long as it pays the bills, I have to be happy with it, but I would much rather have an opportunity to do the things I want to do with writing, filmmaking and educating than have to sit in a call-centre 37-hours a week.  Hopefully, the 16 hours I need to start off with will enable me to carry on with my personal projects and find a way to make them pay.

Watch this space!

It’s taken me a while to get around to writing about my admission for two weeks almost a month ago, but that’s because I’ve still not really managed to wrap my head around the whole deal.

The two weeks I spent on the ward in Harefield in the middle of May were the hardest two weeks of “inmate” time I’ve spent for a long time and I’m not entirely sure why. Perhaps it was something to do with being on an open ward, something I’ve only experienced once or twice in my life, despite numerous, often lengthy, hospital admissions. Perhaps it was because I was missing out on the holiday with a big group of friends that K and I had been planning for close on 3 months.

Above everything, though, I think I struggled more than I have for a while because something in my brain told me I was passed all this. My new lungs have had an amazing start. A minor hiccup after 2 weeks not withstanding, they’ve gone from strength to strength and my lung function has been steadily rising, my exercise tolerance going with it. I even completed the famed last mile of Tresco with my brother and started entertaining thoughts of doing the whole thing next year.

So I suppose I had kind of taken my eyes off the post-transplant complications ball and started to enjoy life without a second thought for whatever else was going on, assuming everything was tickety-boo. Which is, I suppose, a lesson in itself. While new lungs mean great new things, you can never take their health for granted and even though I’d been booming for the last three months, it doesn’t take much to send the body reeling.

The chest pains I’d been worried about were initially diagnosed as Gastritis, but when I saw the team at Harefield I had managed to spike a good-looking temperature to go with the pain and nausea, leaving them little choice but to admit me. For the first 24-48 hours the cause of my ailments seemed a mystery to the docs, until they got my CMV count back, at which point they were more contented, knowing that they knew how to deal with it now that it had been properly identified.

There’s something disconcerting about being given drugs intravenously which are so toxic the nurses have to wear gloves and the pregnant women aren’t even allowed to touch the packaging. Knowing they can’t go near while you watch it being pumped into your veins is pretty bizarre and something I’ve never got used to, despite a history of high-caliber potions in my time.

When I was moved to the open ward, which happened to coincide with K’s departure on the holiday with our friends (at my insistence, I must add, and under considerable duress) and I dropped into a pretty deep funk. It’s the lowest I’ve been since the darkest days of the early post-transplant period and there didn’t seem to be a whole lot going for me at the time.

I’m slightly ashamed of myself now for letting it all get on top of me so much, since at the end of the day I was still a good deal healthier than I had been not 6 months ago, but for some reason (or, I suppose, a myriad of reasons) I couldn’t raise my spirits at all.

Luckily, at Dad’s suggestion, I managed to secure a weekend release while the guys were all away. The ‘rents agreed to drive me in for my doses of anti-biotics twice a day, but I was free to go home for food, rest and over-night sleep, something I’d been getting very little of on the ward, what with the world’s loudest talker on one side and the telly addict on the other.

Eventually, thank goodness, my consultant, the amazing Doc C returned from his paternity leave in the middle of the next week and on his first round of the day told me I was free to head home as they expected my viral load to be low enough to no longer necessitate the use of the IV drugs, enabling a switch to the more home-friendly orals.

I hadn’t been happier than that afternoon when I got back to the flat just after K returned from the holiday and we could just chill out on the sofa and enjoy each other’s company again after nearly a week apart – pretty much the longest we’ve spent away from each other since we got together.

Getting used to the ups and downs of transplant is clearly taking me longer than I thought it would. My mind appears convinced that things can only go well, so any minor hiccup is a bigger deal than it ought to be because it carries with it something of a heavy shock value. I need to keep reminding myself that it was only 6 months ago that I had new lungs fitted and that I still have a way to go to fully recover, however good I may feel right now.

So I’m trying to take things a little more slowly, although how long that will last we’ll have to wait and see. The main thing for me at the moment is doing what I can to avoid what Doc C affectionately calls the “Superman complex”, whereby people (mostly men) post-transplant start to see themselves as indestructible and slacken off their meds and treatments. It’s hardly the way to say thank you for the greatest gift of all, so I’m determined to stay away from it and keep myself at my best.

It’s Oli, back again after my enforced 2 week absence.

This is only going to be a quick one, though, to shout out loud to everyone that I FINALLY ESCAPED.  I don’t know why, but the last two weeks have been two of the hardest I’ve experienced in quite a while.  I know the immediate post-op period was harder, but other than that, this has been the toughest hospital stay I’ve had in a long while.

I’ll try to write a fuller update and coverage of the last couple of weeks sometime tomorrow, but for now I just wanted to thank you all for your lovely comments, emails and text messages and to let you know that I’m very thankfully out in time to enjoy this weekend properly, feeling much better if a little tired from the lack of sleep in the Big House.

Hope everyone’s well, more updates soon.  And thanks to K for her updates again!

Hi, this is K, Oli’s parents have gone away to Luxembourg for a week so to coincide nicely with that Oli has landed himself back in hospital.  He did the same thing in January when they went to Rome.  If I were them, I’d be a little concerned about booking any more holidays!

Oli has gone in today because his stomach/chest pains haven’t really gone away, they kept him there because he decided to spike a temperature as well, I think I’ve said before that if Oli is going to do something he’ll do it well.  It shouldn’t be a long stay for him, the main aim is to get him re-hydrated (he hasn’t eaten or drunk anything for a few days due to pain), get his temperature down and they’re giving him some anti-biotics as a purely precautionary measure.  Blood cultures should come back in the next day or two and they’ll tell if he’s growing anything but the general opinion is that sleep and fluids should make Oli a happy boy again.

In other littler news, a few of you might like to know that I got accepted to City University yesterday to start a Speech Therapy degree in September, I am ridiculously ecstatic and thought you might like some happy news to temper the hospital news.

I’ll fill in with updates once results have come back from blood tests, etc.

This weekend has been manic and really, really tiring, but wonderful at the same time.

I woke up Saturday with the pains in my chest not abating in the slightest.  I’ve still got a stock of Tramadol which I often take for pain in my scar overnight but haven’t used during the daytime for a good few months now.  I’ve been forced back onto them by the pains in my chest again, which is a real drag as it means I can’t drive when I’m on them.

Still, I downed a couple of Tramadol in the morning when we woke up and then stayed in bed for most of the morning while K did kiddie-prep for the arrival of our two nieces in the afternoon.  A while ago we agreed to have them over for the night, Liv being 3, JJ 11, as their ‘rents had plans.  The plans fell through but we figured we’d have them over anyway as we love spending time with them and Liv especially was so excited about it.

I honestly thought we’d have to cancel when I woke in the morning, such was the pain in my chest I knew I wouldn’t be able to do much to occupy them, but K was adamant she could do it herself if the worst came to the worst.

So they rocked up with their mum and little bro around 3pm, then stayed solo later when they headed off home.  The first thing we did was make some little wooden spoon people, which was great fun, although I didn’t actually get a spoon of my own, since there were only 3.  I was relegated to being Liv’s glue-operator, at her beck and call for blobbing when she needed it.

After dinner, we (well, K and the kids) made some cakes, which they threw in the oven to cook while we got the littl’un ready for bed and read her a story.  Once K had rescued the ever-so-slightly over-cooked cakes from the oven, we sat down and played a board game with JJ, before discovering Liv sitting up in bed unable to sleep.

Eventually, after another story and a bit of a grizzle/cry for her mum, we managed to get her off to sleep and we settled into a game of Scrabble with big sis, which was great fun, even though I lost to the always competitive K by 2 points.

It’s funny when I play board games because I’m really not a competitive person – I’m happy enough to play the game, not really bothered if I win or lose.  But if someone else who’s playing is competitive, it somehow turns me into a competitive monster.  I’m happy enough when everyone is chilled and happy playing a game, but if someone is really competitive, I just really, really want to beat them.  I’ve no idea why or where it comes from, but there you go.

Once we were done with Scrabble, JJ headed off to bed only to find little sis had managed to roll herself into a position with her head on one pillow and her feet on the other side of the bed on her sister’s pillow.  Having gently moved her back to her side, the light of her sister coming to bed woke Liv up and we proceeded into a round of very, very tearful calls for mummy.

Eventually, after a call home and a promise that mummy would come get her if she got some sleep (I hate lying to children, but it was a parentally-sanctioned lie, so I felt slightly better about it), Liv settled down and no sooner had she stopped crying than she passed out into slumber again.  Bushed from the day, K and I weren’t long behind, although my night’s sleep was pretty poor since my brain was tuned in to picking up even the slightest peep coming from the bedroom in case the littl’un woke up again.

As it was, we didn’t hear another peep out of either of them until they came into our room at 7.30 the next morning, pretty respectable as mornings go.  We all settled on the sofa bed in our PJs and watched the Incredibles while K, JJ and I slowly brought ourselves to consciousness and Liv ran around jumping all over us like a mini-loony.

Once we’d breakfasted and got dressed, we iced the cakes for their little bro’s birthday party then played a couple of rounds of Tiddlywinks (what an awesome game!) and made a birthday card, at which point it was about time to head home with them.  We took them back and were greeted by an incredibly happy, smiley little brother, who was delighted to have his sisters home to celebrate his 2nd birthday.  I’m not sure he entirely grasped the concept of a birthday, but he was enjoying it all the same.

We hung around for a couple of hours, playing with some of the new toys, reading some books and saying hey to the other family and friends who turned up throughout the start of the afternoon.  Unfortunately we couldn’t stay day because Nana has a bit of a chest infection, which I obviously need to steer clear of, so we had to split the afternoon in half for us to visit early on and Nana to come along after.

Instead, we headed over to my ‘rents to have a great Sunday roast with my mum’s two brothers, one of whom was over from Luxembourg with his wife, and my cousins.  My mum and her siblings are absolutely priceless entertainment value when they all get together and today was no exception.  It was one of the nicest, most raucous, most fun family lunches I’ve had in a really long time.

By the time we got home around 7 in the evening, K and I were shattered.  We have no idea how parents cope with kids 24/7 since we were completely run into the ground after just 24 hours.  We have a new found respect for our brothers and sisters now, since we clearly showed how weak and rubbish we are.  I’m just glad that, unlike K, I don’t have to go to work tomorrow so I can chill out and not worry about anything.

Today’s been the weirdest day, and my first real experience of “illness” for three or four months.  I’ve had no energy at all, I’ve been in bed most of the day and hardly been able to keep my eyes open.  Added to which, I’ve had some really bad pains in my chest which I can’t figure out the source of – they could be muscular or bruising around my scar, but they don’t feel too drastic or lung-related so I’m not too worried.

It’s really odd being unwell again, though, because I’ve not laid in bed for an entire day since before my op.  I don’t like it at all.  Well, the staying in bed part I can handle, but not when it’s enforced because of not feeling well.  I’m sure it’ll all clear up soon, though.

… I was flat on my back in intensive care having just had my rubbish old blowers swapped out for a pair of shiney new ones.  And what a corking pair they’ve turned out to be, too.  Already I’m off galavanting around the country meeting new people, doing new things, catching up on the life I missed out on for most of the last 12 months and more before my op.

I’m reminded today of how special a gift my new lungs are – and just how lucky I am – by the simple horrible day a dear friend of mine has had.  A CF-sufferer like me, she’s been on the Tx list quite a while now (rather embarrassingly I don’t know how long), but last night she got the call she’d been waiting for.  After the usual battery of tests, they sent her down to theatre and put her under.  They even got as far as beginning the surgery.  And then something – no one knows quite what – happened with the new lungs and the whole thing was called off.

Now, I had my fair share of false alarms in my time on the list, but this goes WAY beyond anything I evere had to deal with.  There’s disappointment and then there’s this – it’s so far beyond anything I can imagine I can’t even find the right word to describe it.  I feel devastated and it’s not even me it’s happened to.  So for those of you who are so inclined, Scotland could do with some of your happy thoughts right now.

As for me, well I seem to be generating my own happy thoughts for the time being.  So busy have I been in generating the happy thoughts, I’m now being berated on all sides for the lack of updates on the blog.  I have to admit, rather sheepishly, that I hadn’t even realised it had been a full week since my last update.

So I’m now going to diligently recount the last few days for all those curious people out there – keep your eyes on the earlier dates for the week (yes, I can back-date my entries – a fact which appears to have eluded some of my fair readers over the last couple of weeks…) to see what I was getting up to, which will form some sort of very lame defence of my lack of bloggage.

Thoughts and prayers to Scotland, please – Heaven knows she needs them.

Was back at Harefield today for my first clinic flying solo. Up to now I’ve been along with Mum or Dad and maybe K in tow, too, but now I’m more mobile and – more to the point – can drive myself comfortably for an hour or more (just), I can finally let Ma and Pa go about their usual daily business. In other words, they have to stop skiving off work to run me to the hossie.

What was even better about today (barring all the medical stuff, which I’ll come to in a bit) was that after our experiment with popping into Town last week, I took myself off on the train after the morning tests and got to have lunch with a really old school mate, who’s working for a record label near Archway. It was brilliant to see him and catch up – both of us feeling really happy about our lot in life at the moment, which not only makes a change (for me, anyway) but makes for a refreshingly up-beat and happy little luncheon.

Back at the big H, I saw the main man himself for the first time in a few weeks, which apparently worried him, because you only normally get passed to him if there’s something wrong.

As it happens, there’s not – he’s even given me such a clean(ish) bill of health I don’t have to go back for four weeks(!), barring unseen complications on my part. It’s amazing to think that just 3 months post-transplant, I’m already in a place where my docs are happy for me to stay away for such a prolonged period of time.

The down-side to it is that my lung-function doesn’t appear to be following the usually predicted improvement curve that he would be expecting to see at this stage. Whether this is left-overs from the Organising Pneumonia or signs of something potentially more sinister, he’s not sure.

The big issue with the O.P. is that it can take a long time to resolve (hence the 6 weeks of high-dose oral steroids I’m on at the moment), which means it’s pretty hard to detect if there’s anything else happening. The good news is that the biopsy from my bronch a couple of weeks ago is definitely negative for any signs of rejection and there is also very little or no sign of infection, which are the two main dangers right now.

More likely than not, the plateau in my lung function is a by-product of the O.P. and as that clears up over the next few weeks, my lung function should start to creep back up towards the predicted curve that they would hope and expect to see. Going to the gym and getting more exercise, putting weight on and generally getting stronger should all help that. Since it’s a bit of a waiting game to see how it progresses, that’s why they are happy for me to head off until the steroid course finishes and they can have a proper look to see if everything’s resolved.

For the time being, he’s kept me on some oral antibiotics and added in a second immunosuppressant to try to discourage rejection should there be any lurking or even thinking about having a bit of a lurk. It does make me mildly more susceptible to colds and infections and things, but not to such a degree that it should mess with too many of my plans. The main thing is I can still go to the movies…

All in all – beyond the slight concerns over the plateau – it’s been a good day hossie-wise. In terms of independence and self-confidence, it’s been even better. For the first time since my transplant, I really feel like I’m fending for myself and reaching a level of true independence and it feels amazing. I’ve not known this kind of freedom for a really long time and boy is it good to have it back.