Me and my pneumothorax

So, a little more detail on the trials and tribulations of a bloke with a dodgy ticker…..oh yes, and myeloma thrown in for good measure!! As I briefly mentioned yesterday, things have been progressing smoothly since the operation. I ended being kept in hospital for an extra couple of days as unfortunately my surgeon punctured a small hole in my lung during the procedure, which resulted in a pneumothorax. This is where air that leaks from the lung gets trapped between the lung and the chest wall, causing a collapse of the lung. In my case it was relatively minor and actually resolved itself by spending the following week focussing on deep breathing to expand the lungs. Fortunately, no need to put in a drain, which is good news….didn't really fancy that! In my surgeons defence, apparently the procedure was more tricky than usual, as my veins have narrowed considerably due to the chemotherapy I've received and my lungs are quite large, as I'm damn good looking. Not his words…... exactly…..but it sounds plausible!!

After seeing my consultant last Friday for the all clear regarding my pneumothorax, I'm now focused on stretching my chest muscles around the wound and mobilising my shoulder. After initially being a tad paranoid that I'd end up ripping out the ‘jump leads’ attached to my heart, I'm getting more confident to use my left arm normally. As usual, I want things to progress quickly, but as my good lady reminds me, it's only been a week and a half since the operation. Most importantly, having been shaved in various areas prior to the operation (some of which I don't fully understand, but I'm not going to be the one to ask), my hair is starting to re- establish and my mangy stray dog look is rapidly disappearing!!

So, what else is there to tell. Well, I'm planning on getting back behind the wheel this weekend. My consultant has confirmed that as far as he's concerned I'm fit to drive. I've also informed the DVLA and my insurance company, so I'm good to go!! As far as golf is concerned, it's off limits for another four weeks.

These pacemakers are amazing little devices. The one I've had installed is an MRI safe, dual chamber pacemaker, with electrodes placed on my right atrium and right ventricle. It passively monitors the heart and only kicks in when it senses that my heart has missed a beat. When it does trigger, it paces my heart at the same rate it was beating prior to failure, and then switches off when my heart resumes normal operation. Battery life’s a bit more than your average smart phone and should last 8-10 years. Guess where it's made, yep, Sweden. Is there anything they don't do….Spotify, Skype, Bluetooth, Minecraft….taxes!!

That's enough of the technical stuff. As I said at the beginning, physically I'm healing well. I've also now come to terms with having a pacemaker fitted. I wasn't in such a good place when I had the operation, it all felt very sudden and didn't give me any time to get my head around things. I know it had to be done quickly, but I didn't feel I had much control over what was happening. Similar to my myeloma experience, as I return to normality, things become a lot easier and eventually it all becomes part of the routine. My heart condition is now sorted…..so that's one less thing for me to worry about!! Back up to Kingston hospital this afternoon for my monthly Zometa (bone strengthening infusion). Back to life, back to reality!!

 

And the heart keeps ticking!!

A week on from the operation and all is going well, both physically and mentally. More details to follow, but for now I feel more positive and confident that I'm well and truly on that road to recovery. Even went out for a bike ride around Richmond Park this morning, and the heart kept ticking......I think!!

Life is what hits you... part II

 

You could say quite a lot has been going on over the past few months. You could say life is what hits you when you’re busy making plans. I started to put together this post after my last routine consultation back in March, but have never quite got around to publishing. I thought what I might do then is provide chronology of what’s been going on, beginning February half term.

Feb 18th
We decided to take a short family break in Rome over the half term week. Lena and I had been 14 years ago and loved it, so we wanted to show Marcus some of the famous landmarks…educate the lad as it were. I suppose it's a sign of the times. Our apartment was close to Castel Sant’Angelo, and as we drove past it in the taxi, Marcus’ first comment was ‘cool, that’s the castle in Assassins Creed’. That became a bit of a theme throughout our subsequent sightseeing excursions. We all really enjoyed the break, the weather was kind, 18C and clear skies, and Marcus was genuinely interested in a number of the landmarks, as he'd been studying the renaissance at school, and this clearly brought some realism and experience to all the theory. Highlights of the trip; seeing Perry from Diversity in T5 on the way out, walking round the Colosseum, Roman Forum and Pantheon and Marcus getting a selfie with Pope Francis. Ok, I guess that's a slight distortion of the truth, a selfie with a picture of the Pope on the large screen at St Peter’s Square, Vatican during his weekly audience! Low point of the trip; not only seeing Arsenal loose to Bayern Munich in the Champions League in a Irish bar, but at the same time being accused of being a ‘cold individual’ by a drunk American girl because I refused to talk to her….because I was trying to watch Arsenal being taken apart!! Where's the justice in that!!

Marcus Maximus - Gladiator

 

March 26th
I had my regular consultation with my haematologist this morning. My paraprotein level remains stable at nine, which is the most important indicator. My HB remains low, but in general I've been feeling ok in myself, just a noticeable level of tiredness and fatigue on occasions. Neutrophils within the normal range at 2.5, platelets 166.

I mentioned that I'd been having a few spells of dizziness, nothing too alarming, quite random and something I felt I'd had been around for a fair number of years. The spells only last for a split second, but I felt they’d become more frequent and had a concern that my treatment might be linked to this change in some way. My consultant arranged for me to see a neurologist for a brain scan and further diagnostic tests.

April 1st
We'd booked a couple of rounds of golf at Celtic Manor for my parents Christmas present. I've said that I want to experience playing a few more famous golf courses, so Lena and I joined them for the trip. Hotel room was great, with our balconies overlooking the golf course. Golf was a mixture, but overall great fun and an experience to play the 2010 Ryder Cup course.

I have also taken the decision to drop back to part time working for six months. As I mentioned previously, I have been feeling a little jaded at times, and suddenly, by returning to work full time I had the feeling that most of my energy was being spent at work, and life was starting to ‘pass me by’ again. I felt that moving to four days a week would hand me some time to think, but more importantly, free up weekends so I could enjoy more family recreational time rather than trying to catch up on all the other stuff I either didn't have the time or energy to complete during the week. I say that, I've also just rejoined Hampton Court GC, so in reality, less time with the family, more time on the golf course!!.... To be fair though, it's also great to be able to spend a few hours outdoors playing with Marcus, who's also rejoined.

April 11th
My birthday and the holidays just keep on coming. This time five days skiing in Trysil, Norway, with my brother and family. Being April and being fooled by the temperatures in the UK at the time, I was thinking, spring skiing, beers out on the sun terrace, skiing in my string vest and shorts…ok, forget the last one. It was just as well I chose to take my summer canvas shoes, as they came in very handy when we  arrived in the middle of a blizzard. Must say, they didn't perform that well when I was trying to dig our way into the chalet. Still, at least I’d been slightly sensible and taken Marcus’ winter gear, so he at least was prepared for the conditions….and what fantastic skiing conditions it turned out to be. Plenty of good snow and not too warm. Marcus’ skiing came on really well, and under the expert guidance of myself and brother (well, my brother really, he's the qualified ski instructor), we had him carving some parallel turns by the end of the week. Much love to my brother and family for a memorable week!

 

Just a little bit of snow.....

 

This is where my summer shoes came in handy!

 

 

 

April 24th
So, back to these dizzy spells. Following my initial consultation with the neurologist, I had an MRI brain scan, EEG, an Audio Vestibular (AV) assessment and 24 hr ECG. The AV assessment was an interesting one. The instructions said to avoid alcohol the night before the test and I can now fully understand why. One of the tests was a Bithermal Caloric test. It's been around for a while and involves irrigation of warm and cool water (+/- 7C from body temp) into each ear for 30 secs. This temp change causes fluid movement inside your inner ear canal (your balance mechanism), which in turn can lead some people to experience the same ‘my whole world is spinning and I feel sick’ feeling they would an hour after downing 15 pints of Stella. I unfortunately was one of those people, so not something I intend to try again in my lifetime. Anyway, the long and short of it was, MRI scan was fine, no signs of any potential tumour, the EEG showed no signs of epilepsy, and the AV assessment showed only a minor insignificant imbalance between my left and right side. Unfortunately the ECG wasn't so positive.

May 22nd
After a further 48hr ECG confirmed the previous results, the consultants words ‘Patrick, you have a life threatening condition, we need to fit a pacemaker immediately’ were not really what I wanted to hear. Even though I was aware from the previous ECG that this might well be the case, it didn't really register. So, to be told my condition was life threatening came as a real shock. The 48 hr ECG confirmed I had heart block, a condition whereby the heart misses beats due to an ‘electrical’ failure. Effectively my heart was stopping for just over two seconds at least once an hour, and actually missing four beats (about 4.5 seconds) on a number of occasions. I guess the consultant was worried that, at anytime, the heart could decide not to start again. The funny thing was, having kept a log during my ECG, none of my infrequent dizzy spells seemed to line up with my episodes of heart block. Anyway, the operation to fit the pacemaker was scheduled for the following day.

May 23rd
Good to know I've got the love and support of my family today..….just been sent a link to the Olly Murs song ‘My Heart Skips a Beat’!!

Anyway, here I am, cannula at the ready, disposable pants on (there's a first time for everything), lying in yet another hospital bed waiting for my pacemaker to be fitted. I'm still in shock, this has all been so fast. The month of May has not been kind to me over the last years, my sister-in-law’s funeral in 2011, diagnosed with myeloma in 2012, back in hospital with shingles in 2013, and now, 2014 diagnosed with heart block! We're not yet sure whether it's as a result of my myeloma, the high dose chemotherapy I've received, or that I've just been very unlucky for a second time. The fact that my myeloma was diagnosed early and this heart condition has been discovered before anything serious happened is, in a weird kind of way, good news! Trouble is,  I just don't see it that way right now. I'm pissed off. Why has it always got to be me? I've had my fair share of shit over the last few years….it's someone else's turn!! I spent most of yesterday on an emotional roller coaster. Yes, great that it's been discovered, but you know what, it's just not bloody fair!! I'm told, once the pacemaker’s fitted, everything will be fine. Well, you know what, it won't, I've got myeloma to deal with as well. Things will never be right and this is just a bloody distraction. I'm scared and pretty fed up with things at the moment. It's taken me back to when I was first diagnosed with myeloma. Too many unknowns, too many tears. I know given time I'll come to terms with this…..but right now I'm just thinking, what the hell am I doing in this hospital bed….again. This isn't the way it's meant to be.

In the words of John Legend (All of Me)….’I’m so dizzy,  don't know what hit me, but I'll be alright. My head’s underwater but I'm breathing fine…..’

Happy Birthday Stem Cells

That was then...
 (£10 prize if you can spot the stem cells)



and this is now...

Funny, that first picture made me cry tonight. Don't know why.....reality check, memories, thankful for being where I am now....who knows.

Champagne and tears.......a winning combination!!

Looking back

I’m back at Hammersmith tomorrow for my one year post transplant check-up. Yep, one year….almost! Lena and I have spent a fair bit of time over the last few weeks looking back at where we were this time last year, reminiscing about the great unknowns that stood before us at that time.

At the beginning of December 2012 I spent my first few days in one of the isolation rooms up at Hammersmith, bringing home to me just how vulnerable I was going to be during my transplant. I had my Hickman line inserted and started the whole process of mobilising my stem cells ready for collection. Then it was the 10 days of self-administered growth hormones, injecting myself for the first time. Never been one to watch the needle go in, so that came with its own set of challenges.

Tomorrow marks precisely one year since my stem cell collection. As I said at the time, that turned out to be a massive tick in the box, making all the associated bone pain well worthwhile. Since that day, my cells have been cryogenically frozen in liquid nitrogen, warmed up in a nice bath and then fed back into the poor sod that gave them away in the first place. Most importantly, as of 31^st January 2013, they started growing healthy bone marrow and producing new blood cells.

How life moves on. From a difficult beginning I’m now back at work pretty much full time and cycling around Richmond Park in the evenings….I say cycling, Marcus does that, I just huff and puff, whinging about my lack of breath and general fitness! As a family we’ve done more things in the second part of this year, rather than saying we should. It all culminated a few weeks ago in a dining experience up at Heston Blumenthal’s ‘Dinner’ restaurant at the Mandarin Oriental Hotel in London. Admittedly, a delayed Christmas present from last year, but what an experience it proved to be. Fortunately, one of our good friends happened to know the GM up there very well, and was willing to put in a good word for the Hoban’s. I’m sure it would have been a fantastic evening anyway, but Paul went out of his way to make the occasion truly unforgettable. We even got to sample Heston’s liquid nitrogen ice cream trolley….no stem cells this time, just natural yogurt, cream, eggs, gloves, goggles and …errr…liquid nitrogen!!

 

 

From a health perspective, everything is stable, which is what we like. I had my last set of blood results a couple of weeks ago and my paraprotein level remained at 9. I’m still having my monthly Zometa infusion, and I’ll continue with that until at least the middle of next year. Next paraprotein level check is due mid-January, when I’m expecting my consultant to give me the good news that a one year post transplant bone marrow biopsy is needed…..something to look forward to early in the New Year.

As for Christmas, well, this year is going to be a more social affair, now I’m allowed to mix with the great unwashed…well…family. Last year was great with just the three of us, actually quite relaxing…the calm before the storm. This year it’s going to be fantastic to spend Christmas with all the family, but with a two year old nephew and four year old niece on the scene, I’m expecting a storm…..at approx. 5am Christmas morning. Joy!!

 

 

 

Summer Time and the Living is Easy...

Well, I've finally decided that it's time for another exciting instalment of 'The Life and Times of Patrick J Hoban'. It's been over two months since my last post and a fair bit's been going on over the summer......we've even had a new roof put on the house....how wild is that!!

I'll start off with the most important stuff, and that's the health update. It's been good news from a physical perspective, with my last two blood tests showing my paraprotein levels stable at 10, give or take. All my other blood counts are now back to pre-shingles levels, with my neutrophils level a respectable 2.4, WBC 4.4 and HB 135. All a bit low for normal folk, but considered good value for us myeloma addicts!!

I continue to work part time, with Wednesdays off to break up the week. From a physical perspective I'm coping well, but still remain wary of what happened at the end of May. As I probably said at the time, things felt perfectly fine one minute and the next I'm back in isolation for a week hooked up to an IV drip. I need that little surprise again like a hole in the head!!

From a psychological/emotional perspective I have to be honest and say that things have taken a bit of a dive over the past few months. I've taken a hit confidence wise, which feels more acute in the work environment. I seem to have this unhealthy habit of comparing my performance now with how I felt prior to having seven months off for my transplant. The funny thing is, there's absolutely no pressure or expectation being set by the company, and I appreciate that so much. This feeling is all self inflicted, but saying that, it's a feeling that's there. I need to accept and understand that I've been through a significant change in my life and it's going to take time for things to settle down and for my confidence to re-establish. I mustn't just push what I've been through to the back of my mind and hope to carry on regardless. Annoyingly I can't even blame this on someone else's DNA.....I had my own cells put back in.....damn!!

In addition to the fall in confidence, my ability to focus has also been blurred by the myriad of thoughts running through my head. These have centred around ensuring my diagnosis and treatment have a positive impact on my outlook and the way I live my life. I suppose it's that classic reassessment of my values. I think I'm just frightened of returning to my pre-diagnosis 'normal' lifestyle. Amazing really. I've been craving a return to normality since my treatment began, but now I just don't want my life, and especially my family life, to gradually drift back to where it was a year last April. That's not to say that things back then were particularly bad, it's just that since then my perspective on life has changed. I don't want to be in a position of relapsing at some point in the future, then looking back and thinking, I'm the same person doing the same things I did before my diagnosis. I'm not talking about wholesale changes, perhaps just little tweaks in my life. It's difficult to explain really. This diagnosis has forced my hand into understanding what's truly important in life....faith, feelings, family, friends, wellbeing and San Miguel!! Other things perhaps just aren't as important any longer.

One thing is for sure. I need to give myself the time to re-adjust, and not be too impatient or hard on myself. I am only eight months out of a stem cell transplant, a fact that seems all too easy for me to forget.

Anyway, moving on to holidays, this summer has been somewhat more fruitful than last. Two family holidays including a trip to France and Sweden, finished off with a boys golfing weekend in Turkey. Oh, and Marcus even managed to squeeze in a weeks motorsport and adventure holiday with a mate of his. All great trips....we even had pretty much continuous sun and warm temperatures in Sweden, a minor miracle in itself.... This time around we rented our own cottage on the coast, just south of Gothenburg. Staying with family is great, but it was relaxing for the three of us to have our own space and be able to invite our respect in laws over to 'our place'. Rather than dribble on, I've included a few pictures of the highlights below.

 

 

The little pad in France

 

See, real sun....in Sweden!!

 

There was no room for Marcus on the boat, so we had to drag him behind!

 

Perfect summer photo apart from the weirdo in the foreground!

 



 

Our attempt at a little YMCA on the pontoon!

 



 

Ahhhhh......San Miguel

 

 

 

 

Our room with a view in Turkey

 

 

Anyway, I know I've been a bit slack on keeping you updated with events over the summer, so I'll try and post a blog at least once a month from now on, I bet that makes you happy ;-)

Race for Life

Well, my on going 'allergy' to suncream has really come into it's own over the last week or so. Basting myself with Clover (even though it is lovingly made with buttermilk) just doesn't appeal, so it's long sleeved shirts and a rimmed hat for me for the time being!!

Saying that, things are all good with family Hoban at the moment. Marcus took part in the Race for Life run by his school a couple of weeks ago. He came 4th in the 5k race (out of just over 100 runners) in an amazing time of 18 mins 45 secs, and in doing so raised some funds for a very worthy cause (as well as beating a teacher in the final sprint finish). Hopefully he also drew some attention with his bright orange MyelomaUK t-shirt. I actually found it quite moving when I saw what he'd written on his race bib.

Anyway, as the supportive parent I am, I couldn't hang around to watch Marcus sweat it out on the recreation fields of Teddington school...left that to Len!! I had a boys weekend relaxing on the canals of Warwickshire with my brother and friends planned. We hadn't all met up for a number of years, so it was great to catch up with the guys....all still looking so young...as if they'd just left university....unbelievable!! Well, it was certainly a relaxing weekend, plenty of experienced long boat captains on hand to confidently guide us through the myriad of locks, which seemed to pop up all too frequently. Guess that goes hand in hand with building a canal on a hill....who's bloody stupid idea was that!! I had a fantastic couple of days and even managed to recover from the trauma of having all the locals (including the barmaid) laugh at me for ordering a pint of lager shandy at the first pub we stopped in. My follow up order of half a lager shandy was even less well received....real ale country up in those parts!!

So, what else is new. Well, I'm settling into work more now. It's taken a bit of time to get used to the whole idea, having had seven months off post transplant. My body is starting to adapt and I'm less tired now when I get back from work than I was for the first few weeks. I must say, both British Airways and my work colleagues have been really supportive and patient the whole time. It's made my treatment a lot easier to deal with and enabled me to focus on my health rather than worrying about other issues. For that I am eternally grateful!!

Health wise I'm now back at Kingston hospital for on going blood tests and monitoring. I'm feeling well and certainly starting to sleep better and feel more 'normal' in myself. The skin itchiness has almost gone as well, so life is far more comfortable. With my increasing strength has come an improving social life, and it's been great to get out more and meet up with friends and family. It all helps to bring back some much needed normality to family life.....that's if you can classify our friends and family as normal!! I'm not saying a word.

Took this shot when some deer invaded the green

 whilst I was attempting some much needed chipping practice.

More than makes up for the dodgy golf!!