ensuitepilgrim's Blog

Saturday,26th July

This fortnight has certainly passed more quickly than the ten days in hospital and there have been some difficult scenarios.
A Switchback of a fortnight, highs and lows – although given that high temperature have been part of the ” lows”, that is contradictory!

I do not intend this particular Post to be a litany of woes; the prime function is to keep family and friends up to date, but also to inform others contemplating this surgery, or like myself ,recovering from it.

HICCUPS

Leaky bags – they are the little pouches one attaches to oneself, to cover the Stoma and contain Urine.
This seems to happen no matter how assiduously one follows the simple cleaning and drying preparations,and has continued to happen despite the attention of our specialist Stoma Nurse, Margaret.
Been give different sizes, styles, oh yes ,you would not believe it- till we find one that ” suits you sir”.
This problem is not messy but inconvenient, particularly at 2pm!
This does not happen every change,but too often.
Nurse due next Wednesday; hope she can crack it this time.

High temperature and possible Urine infection – two bouts, latterly ,necessitating calling a doctor as my temperature hit 38.5*.
That was earlier this week; Dr made thorough examination and prescribed same Anti- Biotics, as given in hospital.
Pleased to say that it is the best I have felt since Surgery,just hope the benefits outlast the course of tablets this time.

ON THE UP……

Feeling better – more of an appetite,staying out of bed 9 – 10 hours, walking Up and down the garden, which looks lovely at the moment.
Taking interest in the News, my family and being able to tackle the Guardian Crossword and read my current Novel ” The Goldfinch” by Donna Tartt.

A special word of thanks to everyone who has sent me cards and notes, wishing me well; there have been some uplifting comments and they have been very touching.
Also, thanks for text messages and phone- calls; some of them not about the appalling plight of England’s cricket team!

On a sporting note, haven’t the Commonwealth games been fabulous?
Great coverage by the BBC.
Men’s’ Triathlon and Joanna Rowsell, highlights for me, from England’s point of view and we are still ahead of the Aussies in the medal table.

Finally, must thank Barbara for looking after me – she is as outstanding as a nurse as she was as a teacher – care, compassion and when necessary,firmness.
My daughter Hannah has been a stalwart in looking after the Allotment, in all this heat….and home- baked lunchtime rolls, delicious, thanks, Han.

Both the last Post and this have been written at home; the comfort of familiar views, sights, furniture and most importantly, family.

It is Wednesday, 16th July,for two days now I have managed three light meals and been relatively pain free compared to the past 12 days.

When Pilgrims reach Santiago de Compostella, they claim their certificate from the Pilgrims’ office and celebrate, rightly, nearly all attend the pilgrims’ Mass at the Cathedral, whether they religious or not.
But , traditionally, after some respite, pilgrims would walk for a further three days to Finisterre and burn their ragged, smelly cloaks and sandals;I have to confess to not doing this after any of my Caminhos!

Is there an analogy here?
I reached my goal in coming through the Operation.(no certificate )

I reached home and left all my frequent changes ( sometime four a day ) of gowns and pyjamas, soiled , sweaty sheets behind.

So, will leave it there for now.
It’s pretty much down to me now, with support from the hospital,family and friends….
PS. Scars and Tattoos….there are different kinds of scars, on the skin and in the mind; despite the bad days of pain, I have none of the latter, but three of the former, as a result of the surgery; their minimal size is down to the brilliance of MR Ibrahim, my surgeon.
Never wanted a tattoo, nor jewellery; proud of my scars….they tell a much greater tale than any tattoo.

Saturday , 12 th July

Maybe Thursday, maybe Friday, almost certainly Saturday!

Unfortunately…..no.

A bummer to hear this morning ( Saturday 12 th ) that Monday, 14 th would be my earliest possibility of a discharge;,speaking of which, that’ s part of the problem, apparently.

Backtrack to last Wednesday, first, independent shower, despite two tubes to manage, plus bag. This was a break in what I shall refer to as the ” Gas Attacks”, which are a consequence of a procedure used during Surgery to expand the organs; some of this resides in the system and intermittently and painfully makes its escape ! At the time it was gripping.
I also suffered from bouts of retching up nothing which occurred twice a day ,for three days – thankfully, these, at least, have abated.
I shall not go in to the after effects of this, but to say that they were distressing at times, draining energy, and any interest in the world around me.
Tough work for my regular visitors, Barbara,Hannah and Tom – though they would deny this – as neither they, nor I, could anticipate what state I should be in.
( Daniel and family had kindly driven up on Sunday, to see me )

Roller coaster – good parts and painful parts of each day – tide.

To say that I never expected anything of this proportion would be a classic understatement.
Other experiences – involuntary emissions from the penis – nappy for a day!

Meantime, I have learnt how to clean up my Stoma, replace the bag and attach a night extension – checked by Margaret a nurse who specialises in this procedure and will make a home visit, next week.

One of the senior nurses, Margaret, described my operation as ” the biggest we do on here”.She and Tracey,were particularly good to me.
Wen Tracey heard my going home had been postponed , she sympathised and said,” We like to hang on to the good ones!” Ha Ha….

AN UNEXPECTED TURN OF EVENTS

Still Saturday morning and returning from the shower with my “lamppost”,
Margaret stated that MR Ibrahim, my consultant/surgeon had been on the phone and hearing that a junior house doctor had extended my stay,was coming in to see me; raised eyebrows.

Having come to terms with a two day extension, I tried not to let my hopes rise too much.
In he came, jeans and open- necked shirt, greeted me , looked at the charts, checked the drain lead, checked my pee colour and said to the nurse to get the necessary prescription from the Pharmacy – she seemed to say that would not be possible as it was the week end.
He asked me if someone could collect that tomorrow, Sunday?
Not a problem.
Then he said ” I’ ll just make a couple of phone calls….”
Moments later he returned to say the Prescription was en route!
Out came the lead, fresh dressing; out came the catheter,by himself and I was ready for the off.
What can you say in gratitude to a consultant, who goes to such lengths,in his own time,to help his patient? ” I was just passing” he said, with a smile.
It is something I shall never forget,amongst many things I would not want to recall!

Someone described the “keyhole” surgery I underwent with MR Ibrahim,as
” Painting the hall, landing and stairs, through the letterbox”-Such skill!

Tuesday 8 th July, 7.20 am, Ward 10, Heartlands Hospital.

I thought I should try to recapture these last few days, since entering hospital ; I have left it till now for no other reason than my inability to write, brought about by frequent bouts of stomach cramps and general nausea.
Add this to the difficulty of sleeping, in what is a very quiet, 6 bed room on Ward 10, it is as near to mental , physical and emotional exhaustion as I have ever experienced…This is not lay the blame anywhere, there is no one at fault…only the hand life has dealt and trying to deal with it.

However, shifting the mood, I have so much gratitude to MR Ibrahim, my Urologist-Consultant and the team that worked with him , during my 9 hour, marathon operation,Thursday,3 rd July.I believe there were at least three surgeons present, including a Mentor from Stoke-On -Trent, plus anaesthetists.
The procedure before the surgery was straightforward – an enema for starters, followed by a walk to Theatre.
There I sat on the operating table, whilst an Epidural was inserted Into my spine, where it remained for 3 days.
Next, I was put to sleep and came to 10 or 11 hours later in Intensive Care Unit, or organised “Bedlam”at times.
Only permitted infrequent “sips” of water.
MR Ibrahim and one of the anaesthetists were there,when I came to, telling me of”success”.
Sleep was a roaring canvas of images , all ending in strange patterns engraved in the earth.
When awake again on Friday morning, I became aware of numerous leads and tubes, attached to my body.
Observing the activity in the ICU, was bewildering, with staff hurrying to patients, responding to bleeps and alarms from the variety of life supporting
monitors, writing down details of every temperature taken and urine passed. Rachel looked after me and she told me had done six months and had learned a great deal to enrich her nursing skills but it was not for her in the long term.
I don’t comprehend working 12 hour shifts in such highly skilled intensity, but we are greatly indebted to the NHS, that such dedicated people can be found.
To my relief, on Friday evening,I was transferred, eventually to Ward 10.
This was to prove to be a much calmer environment, but on in which, I was to undergo post-operation trauma…

( will take break now – need to both retain my objectivity and keep my emotions in check)

So, in the last fortnight, I had a pre – op appointment at Heartlands, where we managed to persuade the Nurse to kill two birds,I.e, for both the valve insertion and the surgery.
She graciously agreed and thus avoided an unnecessary visit to Heartlands.

Then there was the valve/ umbrella insertion at Good Hope , to prevent clots tracking up to the brain. Brilliant process,; impressive practitioners!

Fitness test last Monday,breath test then on a fixed wheel bike with 10 leads attached and breathing mask – Bradley Wiggins style…

Finally, meeting with the Urologist, Mr Ibrahim, to sign the consent form for the op.
He told me a mentor would be present during the extensive surgery – removal of bladder, pancreas and other bits and pieces – micro surgery.

So, it was with some glee and relief, we travelled down to Berkhamsted, for a couple of days with Dan & Nelly,Tom & Jake.
We had a lovely time.

That’s Tom Henry.
Then we have

After returning home, we took off in the Motorhome to Diamond Farm, near
Oxford – A gem of a site..boom, boom!
BBQ in th evening, World Cup.
On Monday we went into Oxford.I had never visited, being Hoi Polloi….
I was besotted with the place…what a privilege to study in such an amazing
setting.
Well, it’s all over bar the….

Wednesday – allotment, over to see Jude in Kings Heath,visit Dave A, to wish him happy birthday.
Take my pre-op drinks

Then to Heartlands on Thursday,3rd July @ 7.30 am for admission.
Surgery, High Dependency Unit for a couple of days afterwards.
On to Ward 10
Then,I have to demonstrate I can manage my externals…before discharge.

“Oh, my friend, it’s not what they take away from you that counts. It’s what you do with what you have left. ~”Hubert Humphrey

19/06/2014

8 am arrival at main x-Ray , Good Hope Hospital.

Procedure:- Insertion of a Vena Cava Filter, via the neck, main vein.

Local anaesthetic. Painless procedure undertaken by Dr Jaffe, who was informative and reassuring throughout the entire process.

I lay on the bed, in theatre, with my head to the side,swathed in disposable tissue; the dr was assisted by three other staff.
I was shown the position of the filter on the x-Ray screen; looked like a little parachute.
It’s purpose is to prevent any clots reaching the brain, during surgery.
This is a consequence of the Embolism discovered after the last CTC Scan.
It will be removed at some point after surgery.

Back in recovery room, by 10am , where I was offered tea and sandwiches which were very welcome after the Fast!

As ever, the care and consideration of all staff was brilliant.

And next in this sometimes unpredictable journey?

Monday,23 rd June, a Fitness Test at Heartlands Hospital, to see if I can cope with amount of anaesthetic needed to keep me senseless for a seven hour operation.
Then on Friday 27 th, a meeting with the Urologist at Heartlands, where I shall be expected to sign my life away on a Consent Form.

Well, that’s what we know about….

‘Doctor, doctor, you’ve taken out my tonsils, my adenoids, my gall bladder, my varicose veins and my appendix, but I still don’t feel well.’ ‘That’s quite enough out of you!’

11 th June, penultimate day of excellent holiday in Sabinillas; tomorrow a flight from Gibraltar back home.
Usually, I would be consoled by the prospect of both the World Cup and First Test Match to look forward to but there are other more serious distractions in the next fortnight.
Three hospital appointments – that I know of, leading to major surgery in early July.

Before this holiday, I had greatly recovered from the side effects of Chemotherapy, but only to be told, after a CTC Scan, that I had a Pulmonary Embolism, edge of right lung.
That resulted in my having to inject myself, in the abdomen, with Enoxaparin Sodium every day.The PE probably resulted from the Chemotherapy, making me anaemic.
It is a relatively painless procedure.
After a long session with the Urologist at Good Hope during which he informed me that the above scan showed no other traces of Cancer and at the end of which I made him aware of the surgical route I had decided to take – removal of the bladder.
He was disconcerted when I told him I was flying to Spain the next day, because of the clot.
However, the decision to continue with the holiday has turned out to be a good one, staying in the apartment of our good friends, Anne & Dave Ayling.

So , here are some photos of the holiday:-

The old part of Estepona.

A procession in Marbella.

We are hopeful of a trip in the Campervan before the operation, appointments permitting.
Meanwhile, the logistics of tending the garden, the allotment, between Test Cricket & The World Cup.

Friday, 23rd May

Having undergone another blood test at the Ambulatory Care Unit or
the Walking Wounded ! They telephoned to say that the test showed An improvement in the Platelets count; the daily injections seem to be working.

However, received phone call this morning from Heartlands Hospital, part of the same Trust as Good Hope.
From the Physiology Dept, informing me that they had a request from my Urologist, to run a Fitness test on me – needed for what would be a lengthy anaesthetic prior to surgery in June – they had a free slot this PM.
Too good to be true, so knowing it was going to be exercise, I put on my Wolves’ Kit, only joking!
Got there and was received very punctually at 1pm.

However, when I informed the physiologist that a week ago I had been diagnosed with a PE in my right lung,he said he needed to consult with his Registrar, as this was problematic.
After ascertaining that I had been on injections for blood thinning over the last week, he informed me that it was too risky to proceed!
There had been no communication between the two hospitals on this.

He was very apologetic, but he was doing the right thing.

Meanwhile, I await a call for my ” fitness” test in the near future.

Not much to report from the Pelegrinos, apart from the unlikely phenomena of some rainfall.

I had a positive report from the hospital, after today’s blood test, that the Platelets were on the up; so just keep self- injecting …..left side tomorrow!

Caceres is one of those Spanish ” Secrets ” – we were there not many years ago- wonderful Square , where the Tapas still came free with a glass of wine .

Wednesday 21st May

E-mail from Derm:-

Attached photo Roger enjoying free tapas with vino blanco.
I asked the waiter if he knew you and he said, “Si señor! I remembre Señor Twort very well. He eat MANY tapas here!”
Thanks for your help in making this trip possible John.
Hasta luego,
Derm

And on Facebook, Dermot wrote:-

“Another town; another girlfriend” . Two photos –

They have to take the train from Caceres to Madrid’s Atocha Station, then Metro to the Airport – Quite a tiring journey in prospect.
Hope it goes smoothly.

I am sure that in retrospect, both will empathise with the poster, below.

Ps from Roger:-
In Spain the rain mainly falls upon the plain!

Hola John!
We landed safely at Stansted.
Long queue through Border (No) Control.
Alison met us
I’m on my way to see Joe and Larissa in Epping
Will be in touch
Just wanted to say thanks for everything
Derm

( So pleased that everything worked out as well as it did- blisters apart – time now to reflect upon the Caminho and , of course, regale everyone with the stories… )

Further E-mail from Dermot, this time from Epping.

Caceres Police !

“The one on the right is a possible psychopath.
The one on the left is violent and extremely dangerous.
Both individuals have been overheard shouting “One way! One way!” in Spanish at unsuspecting coach drivers.
[De ida! De ida!]”

Today’s Caminho Song

Featuring Danny & The Champions of the World @ Cropredy.

Sunday 18 th May

When you see the photos, you will know why I felt inspired to choose Simon & Garfunkel’s Song,” Bookends”

Hope you don’t find it ” stultifying” !!

E-Mail, from Dermot:-

Roger and I read your update re GH and blood thinners. Hope the treatment is effective very soon.
At the moment we are both reading our respective Kindle apps in our Hotel in Merida.
Merida is an interesting place, full of Roman artefacts and museums.
But sadly not many supermercados.
Nevertheless, as scout, I managed to find a small one for essential supplies of cheese, fruit, bread and wine.
I was told that it will be closed manana but that there is another one which will be open.
Opposite the museum. Naturally. Where else?
Roger’s foot blisters are still in recovery.
We watched much of Barcelona v Atletico Madrid match.
Roger enjoys the description of soccer that I once heard:
“the stultifying opiate of the unthinking classes”
This, of course, does not apply to the Twort household! [Roger told me to say that!]
Attached photos of bookends
Cheers
Derm

Us Opiate viewers enjoyed the Cup Final, but not the result!

PS from Derm! After I told him about my self-administered injections –
You should “shoot up” in Birmingham city centre. Your street cred would go up by leaps and bounds. Tell them you got the habit from Will Self.

Monday , 19th May
Some photos from Dermot on Facebook:-

Derm would never forgive me if I forgot to include the the ubiquitous
St. Eulalia of Merida.

Again, from Facebook, brother-in-law,Roger in stride,before the blisters got too much!

Tuesday, 20 th May

The end of the road?

Jackson Browne ,singing “All Good Things Got To Come To An End….”