Hooray - a new heart!!

Claudia's operation today couldn't have gone better!
We are relieved, elated and thankful that the ablation procedure was successfully completed and Claudi's heart is mended!!

The new consultant was fantastic - everything we could ever have wished for.
Enthusiastic and willing to explain, he gave Claudi an ongoing commentary from start to finish, although she was mostly too uncomfortable or zonked to follow closely.

From the outset the aim was to induce the arrhythmia, then diagnose, locate and treat it. From 9.45, initial aerobic exercises followed by repeated adrenaline infusions didn't stimulate the problem, so they inserted the catheter wires and started the painful process of mapping the heart in 3D (see attached image) and finally managed to provoke the heart to backfire.



This computer-generated blob is a part of Claudia's upper right atrium. The crosses and colour dots show where the 3D modelling/mapping and ablation "zaps" have been done.

The problem was located in the right atrium (not the ventricle) and for the next hour, Claudia's heart was kept in this uncomfortable Supraventricular Tachycardia (SVT) rhythm while they pinpointed the problem area and then burned it.
Apparently the SVT stopped instantly, the moment they completed the burning process.

Another hour was then spent trying to bring on more SVT, without success.
The procedure ended around 2pm, with the consultant feeling confident that the ablation was a success.

Claudia was discharged at 5pm and is back at home with me as i write this :-)

Claudia's heart operation - 2nd attempt...

A lot has happened since my last post and i will attempt to summarise life since March as soon as i can.
But currently the most important news is that Claudia's 2nd heart procedure is taking place tomorrow (Wednesday) at the BRI's Heart Institute.

Claudia pushed for a second opinion having decided against lifelong medication - a suggestion from the consultant who carried out the 1st procedure. This consultant, it turns out is an atrium specialist - and as Claudia's problem is most likely to be in the ventrical area of her heart, it maybe explains why he was unable to diagnose what is going on in her heart and how to treat it.

Tomorrow's procedure will be carried out by the southwest's top ventrical specialist. His waiting list is 48 weeks long!! He's hot on the latest 3d mapping technology available at the institute, used to zero-in the tiniest areas of faulty heart muscle.

If the problem is diagnosed and can be treated, the procedure could take several hours and Claudia will be kept in overnight. The experience, however, will be very unpleasant. During the operation, she will be placed on an adrenaline drip, which will jump-start the heart into its faulty rhythm. This is always painful. And to locate the problem in the heart muscle, they need the adrenaline drip to maintain this arrythmia for (potentially) hours. We hope and pray that the problem will be straight-forward to find, diagnose and treat.

There are various challenges that can present themselves during ablation procedures and statistically there is a risk of a stroke being induced. I don't want to dwell on any of these negatives, and will update the blog once we have the operation behind us and Claudia back home.

The indignities of google

Is there anyone with an internet connection who has never been tempted to do a Google image search of their name, to see if they appear anywhere near the top?

A recent idle, perhaps vain moment delivered a most joltingly shocking result. Of the 1,900,000 images of Pete Rogers on Google, no. 9 is an image of me, topless, looking slightly unhinged, sporting a rather unattractive 12cm betadine-covered stapled-up wound on my belly.

Could i ever apply for a job again (without using a pseudonym):-) ?

Facebook fails can be avoided without a profile, but can anyone avoid this type of Google publicity? Its ironic that many companies spend stacks of cash trying to get close to the top of Google's 1st page.

With my current image ratings, i should be inclined to dig deep to try and worsen my score... if i wasn't such an exhibitionist!

Latest hospital appointment

On Thursday i saw the consultant again. This was a routine visit - another 6 month milestone on the way to the all-clear.

He was encouraged by my general progress. I had put on 5 kilos since the last clinic (shortly after the Mallorca trip) and he was quick to recognise the benefits of the surgery, despite its unfortunate timing.

Adhesions (eg semi-obstructed/tangled gut) can persist, undetected, causing niggles for years. Their location is often very difficult to identify, so the risks outweigh the benefits of going hunting for them (surgically) if they haven't become acute.

With mine kicking off as they did - the surgeons got rid of a number of adhesions, including the main culprit, which may well reduce my chances of suffering further complications in the future.
Having said that, by cutting me open again the surgeons will most likely have created new adhesions (the gut doesn't like being disturbed) but hopefully insignificant ones.

I'm continuing on 2 drugs at the moment. A proton pump inhibitor, to suppress stomach acid production and reflux - quite helpful with my new stomach being so near my mouth...!!
And an anti-depressant, which not only has levelled out the troughs, but also the emotional peaks. The balance, however, is truly welcome.

Max - 4 pushing 7

Max is great. Mostly enjoying school, he's a veritable vacuum cleaner of the classroom's most interesting words and slang, the latest super hero, computer games, consoles (DS-E?)- all of which gets regurgitated at the dinner time and needs translating or sifting by his hapless parents.

WE LOVE IT!!!

Likes: his brother, beano, his daily iPlayer fix, dominoes, Judy, Joel & Jeremy (among many others), thursday gymnastics, church (honestly :-)), the park, his bike and anything sweet.

Dislikes: cooked tomatoes, non-funky music, anyone watching while he's on the loo...

Louis at the Great Bath

Here's a photo I took of Louis aged 2-and-a-bit, early on a February morning at the Roman Baths. There was a chill in the air and a lot of steam was rising from the hot springs. The photo took itself...

He's a lovely boy - a chilled little thinker/feeler - his character is starting to assert itself on our homelife in some quite amusing ways.

We have a naughty step for such times when a little "time out" is needed.
It serves as a boundary, used when explanation/negotiation/warnings are no longer effective.
Louis is now subverting its purpose by sending each of us in turn to the step when he doesn't get his way. He'll indignantly say "nordy dep daddy!! - nordy dep mummy!! nordy dep Macthhhh!!".

A short while ago before dinner, I asked Louis if he wanted to say a prayer. Without blinking he prayed "nordy dep Desus"...

Claudia's heart operation

For the last 8+ years Claudia has had a kind of exercise-induced arrhythmia. When she exerts herself everything at first seems normal. But then her heart suddenly "backfires" into a completely different rhythm - which forces her to stop with debilitating chest pain.

For years she has ignored it, but since the boys arrived these heart episodes have become more frequent, to the point where Claudia decided to have it investigated.

What Claudia seems to have is a short circuit somewhere in her heart muscle.

Today's operation known as a Cardiac Ablation, is designed to search and destroy faulty electric pathways in the heart. The first half of the procedure is called Electrophysiology - a catheter with 4 wires in it is pushed up a vein into the heart. Then using mini-electric shocks, adrenaline injections and xrays, a map of the heart is made and the problem area identified.
The Ablation is then carried out using the catheter instruments. The faulty heart muscle is "put out of action" by quarterising or freezing. This is supposed to be a curative procedure and we were very much hoping that Claudia could put her painful arrhythmias behind her and enjoy getting fit once more.

Unfortunately the outcome of Claudia's operation wasn't what we were hoping for.
The electrophysiology stage revealed that Claudia's heart wasn't misfiring from just one point but multiple points, rendering the ablation process ineffective. The wrong rhythm was also identified as a ventricular tachycardia (VT)- a very unhealthy one.

Sometimes knowledge is power - at other times it's frightening!

Claudia now has to weigh up her options. A lifetime of taking medication is one of them. She's not too keen on that! Avoiding exercise to steer clear of episodes is another - but that carries with it longterm health risks. "Training her heart" to cope with more exertion could be another theory worth trying. Then there's God and anything is possible with him! We've experienced that for ourselves.

But right now we're pretty tired and gutted. A second opinion may be a route to follow, but we'll see.

New look at nutrition

The adage "you are what you eat" has never really done it for me.
That is until i had a session with an amazing german Doctor specialising in nutrition, who happened to be in the UK a couple of weeks ago.

Bernhard Zipf, the father of friends from Frankfurt trained/practised as a GP, but for the last 20 years has studied the impact that proper nutrition can have on a wide range of illnesses, including cancer.

It was rivetting. The basis of his findings/experience took 4 hours to explain, and the scientific evidence he had to back it up was compelling. Having had my treatment from the NHS brand of "school medicine", it was clear to me that this advice was from the "alternative" end of the spectrum. Not something i was particularly used to or comfortable with in the past.

"School medicine treats the cell" continued Dr Zipf, "alternative medicine treats the milieu (the setting, environment or whole)".

Using cancer as an example, standard treatment pathways use chemotherapy and radiotherapy to target the tumour's rogue cells. These methods are extremely invasive, have numerous unpleasant side-effects and have wildly divergent outcomes.

Dr Zipf's holistic approach by contrast uses a combination of natural de-toxing and de-acidifying, fasting, healthy eating & drinking to render the body a hostile environment for cancer to flourish in.

Our 21st century minds tend to struggle with this "back to the roots" kind of idea. It flies in the face of scientific advance and persuasive pharmaceutical marketing. But it also borrows a lot from the bank of common sense.

..substrate is everything... as Alan Titchmarsh will tell you - mushrooms and azaleas require an acidic soil in which to develop properly. Cancer cells also thrive in an acidic environment.
And so by using a structured nutrition regime to reduce acidity levels in the body, Bernhard has seen tumours slow down, regress and in some cases disappear. It sounds so very simple - too simple perhaps..

The whole detox/deacidify thing requires more explanation than i've given here and i'm not sure i'd do it justice anyway.
But suffice to say that the consultation has given me a new confidence in how to approach food(i came away with a raft of sensible dietary advice and a dizzying array of suppliments that i'll enlarge on in a future post).

Knowing what to eat following the Oesophagectomy was an ongoing problem. It was all a bit hit and miss. I was sick quite a lot, while the cancer dietitians encouraged me to eat "what was good for me". Hmmm.

I eventually found my way and made up my own rules and this process has encouraged me to analyse what i eat like never before. Prior to cancer i used to shovel in anything and everything, but i can't do this now. My digestive system is much more sensitive and i tread a fine line between enjoyment of and cautious respect for my food.

My ongoing thinking is, that if the impact of a meal can still have such a dramatic effect on me, the systemic effects of what i consume over a period of time has to be of significance. I think this is the start of a journey of discovery. I'm at the start, naive and a little dewy-eyed, but i'm convinced there's more to it than meets the eye and i'll be looking into it more.

Back in the UK!

We arrived back in the UK - 1am on Sunday morning.
So relieved to be home and amazing to see Claudia and the boys after the week's separation. Max asked, somewhat bewildered "are you going to be my daddy again? - forever??"

Our wonderful family, friends and church have been taking care of our needs - childcare, food etc

My GP is happy with how the scar is healing, but I've got to take things at the right pace. The operation was 2 weeks ago tonight..

Out of hospital - Convalescing in Palma

My staples are out (no more pictures..) and I'm hanging out by the pool at my relative Rosemary's apartment.
Mum is also here!! She flew out yesterday morning to nurse me back to health and accompany me home. What a total heroine.
She's great company.

The view from here is amazing. A panoramic sea view that changes throughout the day. A huge change from the 4 walls of the ward.

Just a bit paranoid about what I eat. What took me back to hospital was an Ileus Paralyticus.
My guts, already stunned by the operation, became inactive again because - I think - of what I was eating when i was first at Rosemary's. Apricots could have been the culprit. Time, painkillers and lots of fluids sorted me out in hospital so no new surgery will be necessary, which is good news.

Back to bread and water now

A holiday snap ;-)

Scars - oo-aaar!

My stomach has a new scar. The old one 5cm long was subtle enough to hide in the ample tufts of my belly hair un-noticed - mmm.

This new one may need a brass band or a troop of cheerleaders to provide distraction from it! Re-using the old cut, the surgeons ended up extending it to 12cm. This was necessary because 2 additional adhesions were found spaced out along the bowel that needed removing.

The incredi-wound is currently stapled together, resembling the rim of a cornish pasty (from a side view) or a worm that's not about to get very far...

The squeamish should look away



Don't say i didn't warn you :-)

My Bowels...

Hardly a topic for polite company, i know, but a friend asked me what the new blog would be called. I think cyberspace will be spared this, but the last 10 days have been a masterclass in what my bowels will do, won't do, feel like when twisted, squeezed, bloated - you name it. Apparently they respond like earthworms when you touch them..

Its very strange being this far from family and friends, marking the time and hoping/praying that things improve from here. The disappointment of having our big family holiday nipped in the bud is enormous. Claudia was brilliant AGAIN (including our friends - the Lines - who were with us at the time) at looking after the boys and visiting me. But when you're not complete as a family, being on holiday becomes more like being at home - but somewhere where there aren't enough toys/familiar distractions and the frustration of what might have been.

As Claudia has written (thanks love) i am back in hospital for a couple of days for observation. No eating / no drinking. My bowels need to spring back into action, or else there may concerns of yet more adhesions and another operation might be necessary.

In the meantime, my relative Rosemary who lives in Mallorca's capital Palma, has supplied me with a laptop, so i can update the blog.

So you see, i'm not completely on my own, the quality of care here is excellent despite the language barrier and i feel yet again lifted up (its feels strange but tangible) on a wave of prayer, breaking in from all over the world.

Surgery on holiday

This is Claudia writing. Thought it might help to do blog entry to keep people informed about the latest events.
We have just been on holiday to Mallorca. The first week was really great.
Sadly though, Pete became ill in the second week with abdominal pain and vomiting. The long and short of it is, that he required emergency surgery on Tuesday evening in a mallorquine hospital for small bowel obstruction. The surgeon told us that they had found the bowel twisted but also strangulated by some tight scar tissue, which stems from the previous surgery he underwent last year. Thankfully the bowel hadn't suffered any lasting damage and with the scar tissue cut through, it seemed everything would heal well.
I returned to the UK with the boys 2 days ago, as planned, but since Pete was still quite weak, we decided he should convalesce on the island. Rosemary, a "step aunt" living in Palma had offered to look after him, which we were extremely grateful for, although, of course, so disappointed and unsure as to why all this had to happen.
Pete was discharged on Saturday, just as we were flying back out to Bath. He had a couple of days at Rosemarys house but started to feel unwell again last night with more pain and vomiting.
He was readmitted to Inca Hospital in the early hours this morning and is now under observation on iv fluids, being kept nil by mouth.
He has just texted me to say that the vomiting has stopped but that the pain is unchanged.
Would appreciate your prayers for him at this time! We would so love to have him back home. Also I am unsure as to whether I need to fly back out to him. Many "unknowns" at the moment... Thanks for your support !

September catch-up

My CBT course is over except for a refresher evening in early November, where we get the chance to share the ups and downs of using our new weapon (CBT) in the inter-galactic struggle with our anxieties/depression... Fun.

Have i been a good boy? To be honest, its hard to add another layer of commitment over my already chaotic life. A few things seem quite useful - creating positive statements to speak out against the "catastrophising" thoughts that try to assert themselves.
Designating specific worry times (eg between 9 - 9.30am) leaving the rest of the day supposedly free of uncontrolled worrying. And so on.

Also, i'm on anti-depressants now. I've been quite snobbish about them in the past. As if it was a kind of weakness to take them.
Well, i need them. And while they've been lifting me out of the depths, they've levelled of the peaks too, which is kind of strange.
I have no idea how long i'll be taking them - we'll see.

The month HAS had a few highlights.
Firstly our 11th Anniversary, where Claudia and i drove "boy-free" around Devon in a camper van for the weekend - below in the Valley of the Rocks - a mile or so from where we first met



And Max has started school. What he's holding is the traditional present (packed with sweets, pencil case etc) given to children in Germany on their first ever day at school.

August catch-up

My CBT course is in its 4th week. We're an eclectic group of people with either anxiety or depression as our main bug-bear. There's lots of homework/tasks to do. Breathing exercises, practising positive statements, thought challenging to name a few. It all makes sense, but its difficult to carry through.

I'm in dark place at the moment. My low moods are debilitating. I'd hoped that "talking treatments" (CBT) would do the trick. I'm now thinking that the medication option will help me keep a better lid on things. Otherwise Claudia and the boys will continue having a rough deal.

One year on

The new me is 1 today!

My 365th day without cancer started with the lovely Claudia bringing me a cup of tea in bed, a card and a present
(2hrs + pamper session at Bath's Thermae Spa!!).
Like the queen, i now have 2 birthdays - the original Pete and the new one.

It may seem a little strange, seeing things from this perspective, but on this day a year ago my whole "being" went through the most collosal change.
Its a threshold that quite simply determines everything in my life as either pre- or post-surgery.

The experience has been totally horrific and yet life-saving - utterly bewildering and yet packed with the deepest meaning - depressing but also filled with a hope for the future. A future with my gorgeous wife and children. I'd merely looked forward to it before all this. The new me desperately aches and yearns for it. Its such a precious thing.

Speaking of aches. I've had terrible stomach aches over the last week. Whether this is a grumbling tummy bug, dumping from eating the wrong things or constipation from becoming dehydrated in this warm weather, i'm not sure. I don't think anything sinister is going on though.

A little bit of CBT will do nicely...

The weight-loss thing was most probably a red herring. I saw my consultant last week (not his registrar, which was nice). He seemed confident that a CT scan at this stage wasn't necessary. From now on i will be seeing him every 6 months, with Nurse Jo calling me inbetween to make sure things are ok. These guys focus on the physical me. The emotional me bumbles on with its ups and downs.

A Psychological therapist rang me 10 days ago for a telephone assessment of my emotional well-being. I then received a copy of her letter to my GP, to learn that my PHQ-9, GAD-7 and WSAS scores (17, 13 & 16) were concerning... hmm. The longhand for these obscure alphanumeric formulas is "moderately severe level of depression", "moderate level of anxiety" and "significant impact on overall functioning".

Do i recognise myself here? On a good day, no. But there are days when the clouds roll in, and my GAD-7 and WSAS-ness take a real bashing. So i've been refered for a 6 week course of CBT (Cognitive Behavioural Therapy)

This will run from the end of July to early September. The NHS offers CBT in different formats. Working through an online program, group course work or 1 to 1 sessions. As the latter has a very long waiting list, i'll be dunking rich tea biscuits and learning coping mechanisms, on Monday nights, with some of Bath's other alphanumeric champions... Scintillating updates will follow!

Next 3 monthly clinic

Since my last hospital weigh-in i'd lost 2.2kg (70.8kg)..
The registrar raised his eyebrows and suggested i have blood taken and another CT scan.

Losing weight doesnt bode well when recovering from cancer treatment, however i hadn't had any lunch before the (mid-afternoon) appointment and had built up quite a sweat getting there.

Also, in the last 12 months i've had 5 CT scans, each with the equivalent radiation dose of a trip to the moon and back. So i'm not really keen on another one, unless its absolutely necessary.

So Claudia took my blood at the breakfast table, much to Max's sgust (he misses out the "di" on various words eg: saster etc). And thankfully the tests have come back clear.
Then i re-measured myself on the same scales this morning after breakfast and was back upto 71.8kg. I think this was just a blip - atleast that's how i'm choosing to see it.

Depression

Blog activity has dive-bombed this month.
To be honest, i haven't felt up to it.

We were away in Germany (in the Mosel region) for a week in early May. It was a lovely location and the self-catering accommodation was an amazing find. However i struggled with my emotions, became monosyllabic and found myself retreating into some of the darker corners of my mind. That wasn't good. Nor was it fair on Claudia or her parents who were visiting.

Back at home my GP has suggested i go for "talking treatments", rather than medication, for what he thinks is mild to moderate depression. Now there's a label! I'm on a referral list for counselling or cognitive behavioural therapy (CBT). Let's see how that goes.

Finding the right work-life balance is still proving difficult.

Regarding my physical recovery, dumping is almost sorted. I have about one dicky-tummy episode a week. Exactly what causes it is unclear, as i monitor what i eat quite closely. Nausea is also much less of a problem now.