Music & Movement

Max lets rip to his latest favourite track "SLAM - Give God the glory"...
Louis throws his weight in too. A sense of rhythm developing there?

I've tried to instill a solid funky musical foundation in my boys. You know - James Brown, Bootsie Collins, Jackson 5 and the P-Funk All Stars.
House music may have won the first battle, but we will win the war! (Are you listening Stu?)

So convalescence is at an end, let the head-banging begin, i'm sharing the house with 2 ravers.

Oh... my... goodness!

I couldn't resist a before & after comparison. I know... the before shot is adorable isn't it?
Losing 10kg has affected more than just my outward appearance.
Although i've only been back at home one night, Claudia tells me that i didn't snore at all last night, which i hope (for her sake!) is a longterm thing!!
Also without as much insulation, i'm much more sensitive to the cold.

Anyway, being at home is wonderful, but i'm reminded of how little i am capable of doing. This is frustrating and throws into sharp focus how slow my recovery is.. and will be.

I had a clinic at the hospital with my consultant this afternoon and he suggested that it would take 9 months to get back to pre-operation fitness levels. Bad news. However he was very positive about the outcome of the surgery and will not be referring me for further follow-up investigations in the future.
For him, the treatment of my cancer has been as successful as could be hoped for.
Clinical results have shown that the cancer had not spread, so with the tumor's removal the probability of a complete cure is pretty high. We're really praying that this is the case.

The new me

DA-DAAAAA!... The somewhat streamlined new ME!

I've been able to keep my weight teetering around the 70-72kg mark, so yesterday it was possible for my stitched-in feeding tube to be removed.
Utter bliss! I now, after nearly 5 weeks, have my whole body back without any intrusions, arteficial additives and things sticking in and out of it.

For yesterday's appointment i was accompanied by my lovely mum, who at 76 had to push ME around the hospital in a wheelchair, since the distance from the main entrance to the Gastro Department was a lot further than i've been able to walk without collapsing. I'm sure it made a refreshingly unusual sight!

I will be returning to Claudia and the boys from tomorrow, which i'm really looking forward to. The past 2 weeks have been a fantastic oasis in which to recover (the 3rd time during my treatment) and my parents have, as ever, been such good carers/hosts/company.

Gnnnnnnh!

My goodness, this is a frustrating process.
Twinge, pull, numb, sore, throb, ache, stab...

I've had a run of good days, but inevitably a downer has to come along.
Having said that, i've had the longest spell out of bed today - 5 hours - and have spent the evening at home with Claudia and friends Sabine and Tim, over from Australia on their world travels.

Anatomical changes - Pulling / Pushing

Four weeks post-op and counting - and boy i would have expected to have been further than this. The surgeons have done a good job of swapping my insides around, and this has resulted in some very strange, and not so comfortable sensations.
The translocation of my stomach from below my ribs, into my chest has left a space in my abdomen, that my intestines aren't sure quite how to deal with. An awful amount of "pulling" seems to be going on, which can feel like constipation, wind and extreme hunger all rolled into one.
These sensations are of course dependant on where i am between my 6 mini-meals and whether i've just visited the bathroom, when extra space is made, kick-starting the whole "pulling" thing again.
I'm sure it will settle down with time - i just need more patience.

The pushing part comes from my new stomach having to share space with my heart and lungs. Not exactly as God intended and i think i can see why. Pre-operation, the stretchy acidy feelings of over-indulgence would radiate from my abdomen.
Now, as i'm training my "sock-like" stomach to take more food, it is very easy to eat too much and the resulting over-full feelings come throbbing from within my chest. Hmmm

Anatomical changes - Swallowing

As my recovery plods on - a lot slower than i'd imagined and hoped for - getting used to my new anatomy has been quite a challenge. Take swallowing.

To begin with it was a very strange thing, knowing that the destination of my swallows (my svelte new stomach) was just below the level of my collar bone. There would be these strange gurgling noises. It was a bit un-nerving. Now, as i'm starting to eat more and more, the feeling of swallowing is not so unusual anymore, but the psychology of it is playing a more un-nerving role... hmm.

The average person walking down the street will take in other people's appearances, their faces, what they wear, hair colour etc.
I, on the other hand, can "see" stomachs. Don't get me wrong, i don't think i'm sectionable - yet, but in my mind's eye, i can visualise the position of people's healthy stomachs as they go about their business. It happens on occasion, but quite involuntarily. I can even be watching a film and find myself analysing the actors.

Why do i do it? Perhaps i have a minority complex. Perhaps its part of a strange grieving process for the old "me". Perhaps i'm bonkers.

I still find it awesome that nearly 4 weeks ago, surgeons with the skills to join the stump of my old oesophagus, with the stitched up remains of my stomach, have enabled me to carry on swallowing in a way that feels close to normal.

Birthday

Claudia's 34th birthday today!!
Its bewildering. When we first met all those many summers ago at Lee Abbey, she was 20 and i was 24! What a lot has happened since then..

The day started with Claudia and the boys coming up to me (at my parents) for a birthday breakfast. After some shopping, lunch and pampering in town, she came back to my parents in the afternoon, where family and friends, the Gadsbys, had converged for tea and cake on an almost german scale.
There was a very impressive array of confection - overwhelming in fact, for someone with such a small stomach!
Claudia is now being wined and dined by some doctor friends in town. She SO deserves it!


With my 'recovery filter' on, the day was a rather disrupted pattern of appearing for periods of time, then retreating to bed to build up enough energy for the next appearance. The family were incredibly supportive and overall it was a positive day in terms of the ongoing aches and pains.
It also appears that my weight loss might be slowing down. My mum's food has been exceptional and though my appetite hasn't been heroic, the little and often thing seems to be working.

Limits

This next phase of recovery is going to be about discovering limits.
Limits of my physical endurance, what i can eat without provoking a nasty reaction, how much sleep my body requires per day and how much pain relief is still necessary.

As with the hospital stay, i realise that i'm having "up" days followed by "down" days.
Today is not a particularly comfortable day, following a rather explosive episode last night. Claudia has suggested i start a food diary as a way of keeping track of what agrees with me and what doesn't. This is really going back to basics! I've never had an intolerance or allergy to anything and to forego something i've otherwise loved eating would be quite frustrating.

But family and friends are doing their very best to keep my spirits up.
Its amazing to see Claudia and the boys every day! Max always wants to see and touch my feeding tube (which is stitched onto me on the outside, with a tube passing through into my small intestine). The whole thing must be so weird for him. Claudia has done so well in trying to explain what has happened to me... it goes something like this:

"Daddy was sick, so the doctors did some mending on him in hospital. They made his 'food slide' better"!

Inspired.

Free

That's how it feels to be out of hospital. I'm no longer having my blood, temperature, oxygen saturation, blood pressure, beats per minute, urine and no. 2's checked on a regular basis. I can enjoy a normal mattress and my mum's food is galaxies better than the NHS menu.

The NHS otherwise did itself proud.
I felt so well looked after during my time in hospital. The staff were fantastic, caring and encouraged me with every mini-milestone of my recovery - from bed-ridden agony to tentative walking up and down the ward.
It is a major blessing to have a health service like this in our country.
For all the pressures on its finances and services, it was there for me when i most needed it. I'm just glad i don't have to wear those surgical stockings anymore!

Anyway, the sense of release is quite extra-ordinary. In one sense my stay in hospital seemed like an eternity. However my 20 days enabled me to see Darren's plight from a new perspective and my respect for him has mushroomed. He has been receiving hospital treatment since before my 1st chemo round began, and he still has a long way to go. How he copes I DO NOT KNOW! I spoke with him today and he is in a surprisingly good place emotionally. His update i promised is long overdue..

As far as i'm doing.. i'm still losing weight quite rapidly. I've lost another 1.5kg in the past few days (9.5kg in all), but i'm hoping that this will slow down soon.
I'm trying to establish a rhythm of eating little and often. This effectively means 6mini-meals a day. Its quite a strange regime to get used to and i've no idea how this will impact on my daily pattern once i'm back at work. I guess i will become a champion "grazer".

FINAL NIGHT IN HOSPITAL??!??

My blood values have been behaving and since finishing anti-biotics (last night), i haven't had a temperature. So it could just be that tonight will be my last at the BRI. The thought makes me well up. I have been in hospital for a staggering 20 days!

I have already lost 8kg in weight and this will most probably increase in the first few weeks on the outside. I am really interested to see Max' reaction when we finally meet up again. My weight loss is clearest to see in my face. My cheeks are thinner. Claudia says i'm back to how i looked when we got married! I LOOK 10 YEARS YOUNGER!!
That's open to opinion...

Although i still feel quite sore, i'm detecting the first flourishings of recovery in my body. I feel ever_so_slightly stronger with every day that passes. My appetite is increasing very slowly. I can walk further each day without getting exhausted.

I may have overdone it today though. Following an amazing visit this morning from my big sister Cathy, when we 'broke bread' and prayed together - Claudia took me on my first outing outside the hospital!!
I have no idea what the punters thought of my hospital PJ's, anti-thrombosis stockings and wheelchair. But sitting under a parasol at a bar opposite the hospital's main entrance, sipping a cold drink with my gorgeous wife was a very 're-humanising' experience.

Pete the Patient will soon no longer be!

Recovery in the slow lane

Well, in several respects things are going well. My manifold scars are healing.
I had more fluid removed from around my left lung yesterday afternoon, so my breathing has greater capacity and is more comfortable.
But my blood tests are showing that a background infection is rumbling on, despite receiving powerful anti-biotics since last Saturday. These drugs are suppressing my appetite and messing around with my bowel movements.

I'm often reminded by staff here of the huge-ness of the operation 2 weeks ago and that i need to allow enough time to recover. But it's dragging now, emotionally anyway.

Without any complications, i could have been home by now. One of my ward-mates left today. He had the same operation as me, but a week later!!! Fortunately, he had no complicating issues, so he's out enjoying this rare, lovely weather.

How i'd so desperately love to be home now, but i need to hang in there. I've been given a potential discharge date of Monday (10th)!! But any number of things could get in the way of that. Would value your prayers that the weekend would be a time of strengthening, beating infection and developing my appetite.

Unplugged

As each hospital day has passed, the tendency has been for one day to be good (with encouraging news & developments), followed by a bad day (where pain or another complication feels like a setback). Today is mostly a good day. This morning my 'happy' morphine button was finally taken down and my feeding tube disconnected, meaning that i have been tube-free for the first time since the operation!! (13days). That part has been great!I have noticed, however, a gathering shortness of breath this afternoon and a chest xray revealed more fluid gathering on my lungs which will need to be tapped as it was on Sunday. (it will be done tomorrow morning, meaning an uncomfortable night for me). I look forward to an end of these twists and turns. The chest infection I developed (mentioned in earlier entry) has been confirmed as Hospital Acquired Pneumonia. I am on powerful antibiotics to sort this out. We're getting there, but it sure is taking a long time!!

What a difference 820 ml make....

Last night was troublesome. A few hours of fitfull sleep, no position was comfortable for long and i used the 'happy' button, bringing morphine distraction, throughout the night.
My left upper lung area was very painful. Relaxed breathing to help with the anxiety of it all wasn't helping, because i couldn't breathe properly to start with.

So one of the consultants booked me in for another 'barbecue' pleural tap after lunch.

This time they removed over 820ml of fluid, using the same method, from around my lungs. The results were instantaneous.

I went from being 'groggy' to feeling 'normal' for the 1st time in 12 days!!
I didnt rush to put my oxygen mask back on, and breathing became a whole lot easier. By no means perfect, but much simpler. This was perfect preparation for Claudia's next visit, 20 minutes later.

The number of times i've been writhing in agony or been bombed out on morphine when she arrived.. This time we could share a few tender moments together.
It was wonderful!!

I really hope that everything recovery-wise goes well from here. But you can never tell what tomorrow (or even tonight) will bring.

That being said, i remain conscious of the vast amount of prayer that has encircled us through all this.
It was therefore with interest that i felt the area of my lungs that was most uncomfortable, suddenly glow with a searing, but lovely warmth, just as the aspiration was about to start... Hmmm.

Days of pain in a nutshell

The last few days have seen a major uphill struggle against the various pains associated with the operation's aftermath. And the struggle is not yet over.
Part of me thinks, a daily update would have been too tedious to re-read. But in truth, i have lacked the strength, stamina or pluck required to maintain the blog in its regular rhythm. But it has been an important focus for me in the part few months, so i will endeavour to keep going.

Anyway, as it stands, 10 days post-operation, i have a way to go before they can discharge me.
My chronic chest pain has resulted in a resumption of normal breathing that is far slower than the consultants would have liked.
And now, although it may be to early to say, i might have picked up a chest infection.
Also, my eating needs to be adequate enough so as not to rely on drip feeding into my tummy tube..

But lets not end on bad news. The best possible results came back from the tests done on tissue surrounding the tumor, which was removed during surgery.
It was completely clear of spreading cancer.
THANK YOU GOD!!